Survivorship: A Sociology of Cancer in Everyday Life 0815360304, 9780815360308

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SURVIVORSHIP: A SOCIOLOGY OF CANCER IN EVERYDAY LIFE

This book provides a contemporary and comprehensive examination of cancer in everyday life, drawing on qualitative research with people living with cancer, their family members and health professionals. It explores the evolving and enduring affects of cancer for individuals, families and communities, with attention to the changing dynamics of survivorship, including social relations around waiting, uncertainty, hope, wilfulness, obligation, responsibility and healing. Challenging simplistic deployments of survivorship and drawing on contemporary and classical social theory, it critically examines survivorship through innovative qualitative methodologies including interviews, focus groups, participant produced photos and solicited diaries. In assembling this panoramic view of cancer in the twentyfirst century, it also enlivens core debates in sociology, including questions around individual agency, subjectivity, temporality, normativity, resistance, affect and embodiment. A thoughtful account of cancer embedded in the undulations of the everyday, narrated by its subjects and those who informally and formally care for them, Survivorship: A Sociology of Cancer in Everyday Life outlines new ways of thinking about survivorship for sociologists, health and medical researchers and those working in cancer care settings. Alex Broom is Professor of Sociology in the School of Social and Political Sciences at The University of Sydney, Australia. Katherine Kenny is Research Fellow in the School of Social and Political Sciences at The University of Sydney, Australia.

Routledge Studies in the Sociology of Health and Illness

Ageing, the Body and the Gender Regime Health, Illness and Disease Across the Life Course Edited by Susan Pickard and Jude Robinson Insane Society: A Sociology of Mental Health Peter Morrall Risk and Substance Use Framing Dangerous People and Dangerous Places Edited by Susanne MacGregor and Betsy Thom ‘Ending AIDS’ in the Age of Biopharmaceuticals The Individual, the State, and the Politics of Prevention Tony Sandset HIV in the UK Voices from the Pandemic Jose Catalan, Barbara Hedge and Damien Ridge The Rise of Autism Risk and Resistance in the Age of Diagnosis Ginny Russell Performance Comparison and Organizational Service Provision U.S. Hospitals and the Quest for Performance Control Christopher Dorn Survivorship: A Sociology of Cancer in Everyday Life Alex Broom and Katherine Kenny For more information about this series, please visit: https://www.routledge.com/ Routledge-Studies-in-the-Sociology-of-Health-and-Illness/book-series/RSSHI

SURVIVORSHIP: A SOCIOLOGY OF CANCER IN EVERYDAY LIFE

Alex Broom and Katherine Kenny

First published 2021 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 Alex Broom and Katherine Kenny The right of Alex Broom and Katherine Kenny to be identified as authors of this work has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Broom, Alex, author. | Kenny, Katherine, author Title: Survivorship : a sociology of cancer in everyday life / Alex Broom and Katherine Kenny. Description: Milton Park, Abingdon, Oxon ; New York, NY : Routledge, 2021. | Series: Routledge studies in the sociology of health and illness | Includes bibliographical references and index. Identifiers: LCCN 2020046101 (print) | LCCN 2020046102 (ebook) | ISBN 9780815360308 (hardback) | ISBN 9780815360315 (paperback) | ISBN 9781351118545 (ebook) Subjects: LCSH: Cancer--Patients--Care. | Cancer--Social aspects. | Caregivers. Classification: LCC RC262 .B763 2021 (print) | LCC RC262 (ebook) | DDC 362.19699/4--dc23 LC record available at https://lccn.loc.gov/2020046101 LC ebook record available at https://lccn.loc.gov/2020046102 ISBN: 9780815360308 (hbk) ISBN: 9780815360315 (pbk) ISBN: 9781351118545 (ebk) Typeset in Bembo by MPS Limited, Dehradun

CONTENTS

List of Figures Acknowledgements List of Abbreviations Introduction

vi vii viii 1

1

Bodily Becomings

26

2

Waiting, Hauntings and Surviving

47

3

Malignant Attitudes

64

4

Entangled and Estranged

82

5

Collective Emotions, Affective Relations

100

6

Enchantment, Acceleration and Innovation

119

7

Participation and the Making of Possibility

136

Conclusion

151

Index

158

LIST OF FIGURES

I.1 ‘A day in the life/Walking the mile’. Photo by research participant, 2016 I.2 ‘Peace’. Photo by research participant, 2016 I.3 ‘The circle of life’. Photo by research participant, 2016 I.4 ‘Surviving innovation’. Photo by research participant, 2016

6 12 14 15

ACKNOWLEDGEMENTS

First, the authors gratefully acknowledge the participants in this research, as well as the support of the Australian Research Council, the Royal Brisbane and Women’s Hospital, the Mater Hospital, St Vincent’s Hospital and the Royal North Shore Hospital. Second, various people helped carry out this research, including Zarnie Lwin, David Wyld, Emma Kirby and Stefanie Plage. Their contributions are gratefully acknowledged. Finally, the assistance of Stephanie Raymond is acknowledged in the preparation of this manuscript. This book was supported by funding from the Australian Research Council (DP150100414 and DP190100745). We note that parts of particular chapters in this book draw from previously published material. Small parts of Chapter 1 were originally published as ‘Terminal anticipation: Entanglements of affect and temporality in living with advanced cancer’. Subjectivity, 10, 374–392. doi:10.1057/s41286-017-0034-x. Copyright © 2017. Springer Nature: Palgrave. Parts of Chapter 2 were originally published as ‘On Waiting, Hauntings and Surviving’. The Sociological Review, 66(3), 682–699. doi:10.1177/0038026117719216. Copyright © 2018 Sage. Parts of Chapter 4 were published as ‘Entangled and estranged: Living and dying in relation (to cancer). Sociology. doi:10.1177/0038038520918853. Copyright © 2020 Sage. Parts of Chapter 5 were published as ‘The collective/affective practice of cancer survivorship’. The British Journal of Sociology, 70(4), 1582–1601. doi:10.1111/ 1468–4446.12616. Copyright © 2019 John Wiley & Sons Ltd.

LIST OF ABBREVIATIONS

CAM Complementary and alternative Medicine CT Computed Tomography FDA Food and Drug Administration MRI Magnetic Resonance Imaging PBS Pharmaceutical Benefits Scheme PET Positron Emission Tomography STS Science and Technology Studies

INTRODUCTION

Unlike many of the so-called ‘diseases of affluence’ that now ail modern in­ dustrialised societies, cancer has been with us for millennia. From the malignancies of Egyptian mummies from 3000 BCE to cancerous human bone fossils that date back over a million years, cancer is as old as humanity itself (Hartshorn & Morris, 2019; Urbano, Rodrigues, Cerveira, Ferreira, & Alpoim, 2011). In fact, cancer predates us, as evidenced by the recent discovery of osteosarcoma in the femur bone of a 240-million-year-old turtle-like reptile from the Triassic period (Haridy et al., 2019). In this sense, what matters to us in cancer is not so much its distinct features as a disease but what it means, how it feels and how we experience it as part of the human condition – how we, as social beings, understand it, construct it, shape it and live it. Of course, this doesn’t happen in a vacuum. How cancer is lived depends, fundamentally, on the peculiarities of social context. Cancer is thus both a cellular event and a historical, cultural and economic production, with our species involved in an elaborate technological and pharmacological show-down with one of its most enduring threats. While cancer may have been present throughout the history of humanity (and before), it was neither known nor experienced in ways that are remotely similar to how we ‘do’ cancer today (Hajdu, 2004; Topi et al., 2020). We now understand (and attempt to combat) cancer in highly specific ways, which have shaped and are shaped by our particular modern ontology of this disease. The (eventually mummified) Egyptian would likely have known, understood and experienced their malignancy (if at all) in ways that bear little resemblance to ours. For the turtle – whose malignancy was revealed via sophisticated micro-computed tomography (micro-CT) technology – the threat of cancer lurking within its bones likely paled in significance compared with other daily threats to its existence during the Triassic period. As actors in the modern production of cancer, biotechnologies set the scene for cancer to be thought of, and treated, in new and particular ways (e.g., Greenwood,

2 Introduction

Dodelzon, & Katzen, 2018; Lirici & Hüscher, 2016). Even if it has always been with (and within) us, cancer has only become visible in recent years with the invention of technologies such as X-ray, magnetic resonance imaging (MRI), computed tomography (CT) and positron emission tomography (PET). These and other modern technologies have not merely made cancer visible. They have also transformed the very nature of disease, its solutions and its experience. These technologies are now fundamentally intertwined with how we understand the very make-up of our bodies (and disease). Technologies, then, are part of the modern production of what we think we know about cancer. Both CT and MRI, for example, use particular forms of data to represent cancer within the human body (and in Triassic-period turtles); but they also embed particular assumptions – about healthy bodies, acceptable margins and reasonable risk. It is not that they are erroneous or misrepresentative; rather, they are representations and actively contribute various elements to our current ontology of disease that may be otherwise. And in doing so, they make particular things matter more or less than others. What matters most, as a result, may sit in contrast to how we, as sentient and social beings, know, live with and experience disease. The twentieth century saw not only the development of novel ways of seeing cancer, but new ways of treating it, too. Modern cytotoxic chemotherapy agents emerged following the Second World War; during the 1940s, Yale pharmacol­ ogists Alfred Gilman and Louis Goodman decided to investigate whether the observed effects of mustard gas used in the context of warfare could be directed towards malignant tumours, specifically in mice with lymphoma. They could. Soon, other cytotoxic compounds were deployed, including plant alkaloids de­ veloped from the rather modest-looking flower Catharanthus roseus (formerly Vinca rosea). Although the results of such treatments in human patients were often mixed, major successes in particular areas (for example, acute lymphoblastic leu­ kaemia in children) paved the way for cytotoxic chemotherapies to become the norm within cancer care. While cancer has always been with us – and indeed a part of us – we have also heavily shaped its form, impacts and experience through our attempts to visualise it and ‘cure’ it. While chemotherapies and radiation treatments that have centred on the destruction of cancerous cells (Herrmann, 2020) are, to a certain extent, changing with the rise of precision medicine and immunotherapies (Iriart, 2019; Lacouture & Sibaud, 2018), which we examine in the latter chapters of this book, the tripartite strategy of slash (surgery), burn (radiation) and poison (chemotherapy) remains a core aspect of contemporary cancer care. It also dominates the experience of survivorship, in that cancer sur­ vivorship is as much about living with modern cancer treatment as it is living with disease itself, depending on the particular ‘solutions’ and medicocultural logics of the particular moment in time (e.g., Hoffman et al., 2016; Ichim & Tait, 2016; Ridgway et al., 2016). This is not to downplay the successes of oncological treatments over the last hundred years or so, but rather to emphasise the particular ways in which they have framed disease and inflected illness experiences. While we are (perhaps unfairly) assuming that cancer means more to us now than it did in Egyptian times, this assumption raises the question of what makes cancer so

Introduction

3

culturally significant and interpersonally devastating. That cancer remains so stub­ bornly resistant to our attempts to eradicate it, and thus inspires considerable dread, seems self-evident, yet it is important. Combine the potential pain, suffering and even death that cancer is taken to foreordain, and you have an obvious mix of undesirables. Cancer is obviously something to be solved, fixed or avoided. Or is it? After fifty or so years of fighting the so-called ‘war on cancer’ (Davis, 1928; Jefferies, 1921; National Cancer Institute, n.d.), the battle is not being won. Certainly, it continues to be fought on different fronts (through genomics and vaccines, for instance), but if anything, cancer, particularly in the Global South, is actually rising, both in caseload and in significance (e.g., Broom, Kenny, & Kirby, 2018; Smith & Mallath, 2019). In fact, the ‘gains’ against cancer during the 20th century have largely been achieved through improvements in public health and living standards, and early detection via screening programs, rather than through dramatically more successful treatments (Rebbeck et al., 2018). That is, our greatest accomplishments against cancer have come through other areas of social life, which many con­ temporary pressures of neoliberalism, austerity, inequality, polarisation and even the current global pandemic threaten. The ‘battle’ with cancer, then, is likely to con­ tinue on this social terrain, as part of the human condition, as long as our species endures. In many respects, the struggle against cancer requires more than van­ quishing biophysical malignancy. Instead, it requires an ongoing tussle with the limits of life itself, the meanings of our attachments (with others and to commu­ nities/society) and, ultimately, our own mortality. The story of cancer survivorship, at least over the last few decades, has unfolded within this broader landscape of the ‘war on cancer’ and been dominated by a focus on the biomedical dimensions of disease, treatment and survival. From a biomedical perspective, ‘cancer survivorship’ articulates prognostic trajectories defined by quantitative survival curves which reduce the complexity of living with disease to the binary outcome of life or death. Put differently, conventional cancer survivorship provides a disease-centred model of cancer and cancer survivorship (see Kerr, Ross, Jacques, & Cunningham‐Burley, 2018; Shapiro, 2018). What makes diseasecentredness a problem in terms of thinking sociologically about cancer survivorship? In focusing primarily (or sometime exclusively) on the biopathology of cancer, disease-centred approaches apply a particular lens to the nature of the problem and thus the types of solutions worth pursuing. The disease–technology–pharmacology nexus identifies the unit of analysis (size or spread of tumour) and determines the success (remission or cure) or failure (recurrence or disease progression) of treatment. Crucially, and as a result, the disease-centred model of survivorship delivers particular answers to the question of what is of value in living with cancer. It could quite easily be argued, and routinely is, that a disease-centred approach works. Were it not for the biomedical interventions on which this model is based, wouldn’t many people have died prematurely? Further, hasn’t disease-centred treatment been highly transformative, delivering a ‘cure’ in some contexts and extending life, sometimes quite dramatically, in others? Consider the dramatic change in life expectancy for children with acute lymphoblastic leukaemia, already

4 Introduction

mentioned, or more recently, the incredible reductions the HPV vaccine offered in the context of cervical cancer, or the recent targeted therapies for advanced lung cancer. Surely these are illustrative of the potency of disease-centricity. In many respects, yes. But in the pursuit of a narrow disease-centred model of survivorship, what has emerged is a myopic view of cancer, which leaves out of focus other dimensions of what cancer is, and how it is lived, in everyday life. The diseasecentred model of survivorship tends to align with a similarly narrow, though culturally celebrated, vision of the tireless, persistent survivor, who wishes to live through and overcome cancer (e.g., Broom, 2012). It valorises some things – the doctor’s orders, the proactive patient, the smiling survivor – while silencing other experiences that may unsettle the dominant ways in which we think about the meaning of disease and why cancer emerged in our bodies in the first place, and that it might or might not be overcome. Widely divergent experiences of cancer are often subsumed under the ag­ gregation of population-level survival statistics, in which the numbers (of survi­ vors, of life expectancies and so forth) may obscure the outliers in the cancer milieu: those who do exceptionally well, or exceptionally poorly, for seemingly no good (biomedical) reason. Similarly, the cultural celebration of a particular vision of survivors leaves out those experiences that diverge from such normative imagin­ ings, silencing terminal survivors, treatment refusers and reluctant carers, to name just a few of the divergent types. Disease-centred cancer survivorship can thus miss much of the person (‘around’ the malignancy) and the people (around the person with cancer), including the forms of relationality, sociality and normativity that inflect these important relations. As will become clear throughout the following chapters, we propose a personcentred approach to survivorship that fleshes out some of the complexities of the minds, bodies and social worlds (and the unclear and porous boundaries between them) that pervade cancer. A person-centred approach to cancer survivorship allows us not to shy away from the uncomfortable cases: those who do ex­ ceptionally well, or badly, or who don’t conform to our cultural expectations about how one should live with cancer. It doesn’t avoid the improbable, but asks, What makes something improbable to begin with? To deem someone to have ‘done well’ or be ‘doing badly’, to be ‘soldiering on’ or ‘having a tough time of it’, assumes a variety of normative courses to the steady march of cancer (towards death, towards cure or otherwise). Such predictability, however, is illusive and denies the vitality and uniqueness of person/s, culture and time. Therefore, cancer survivorship, as we argue throughout the chapters of this book, requires an urgent rethinking, replacing disease-centredness with a more critical, person-centred lens that can broaden our analysis to include the full spectrum of social dimensions that inflect cancer survivorship. Refocusing on the person and what they want, value and feel lifts the lid on many of these dilemmas, because, perhaps unlike our biomedical representations of disease that tend towards exactitude and precision, our very human stories tend to articulate paradox and contradiction in the face of established knowledge

Introduction

5

(Diedrich, 2015; Henrich et al., 2014). They push up against what we think we know to be true and unsettle our normative expectations as everyday experience brushes up against them (e.g., Broom, 2012). This leads us to re-emphasise the person/s with cancer, repositioning them as the central storytellers (Saiillant, 1990). This is replete with problems for those who view cancer within the limiting frame of biopathology. Patients believe things that are ‘untrue’, want things that they can’t have and achieve things beyond realm of possibility (see Harrington, 2008; Sachs, 1995). Such is the unruly character of narrative and subjectivity, and the messiness of everyday life that those working in cancer will recognise as the stuff that they manage, alongside the disease itself, in ‘treating’ people with cancer every day.

Liam In 2016 we met a participant whom we will call Liam, a thirty-seven-year-old man living with advanced colorectal cancer. He was extremely unwell from successive rounds of chemotherapy, radiation and surgery. Yet he felt compelled towards survival. He was, after all, only thirty-seven, and had, so it is said, his whole life ahead of him. As part of his participation in our study, and like others, he took a range of photos. He also captioned them to help convey their meanings. His photos reveal the tussle between survival and relief, coercion and wilfulness, agency and constraint, as played out in ‘a day in the life’ (see Figure I.1). In Liam’s own words: It sometimes scares me that when I get to the point that ‘if this gets worse or it gets too much’ is the whole escape feeling, that I just want to stop and one day it’s going to be overwhelming and I’m going to go jump off a bridge or something because you just don’t want to do it anymore. I always worry about getting to the point that your whole life is based around the next chemo treatment, to get you to the next chemo treatment, and that’s all you do. What’s the point of living to get to the next chemo treatment and doing nothing in between? … I’ve always had this point in my head that I’ve always thought, ‘If I get to this point I’m not doing it.’ So right back at the start of 2013 that point was, ‘If I ever got sick enough that I needed a lot of medical help I’m not doing it’, and here I am [laughter]. As we will show, Liam is not alone. In fact, he is but one in a very crowded arena of people living with cancer whose experiences are represented only through their aggregated disease outcomes (often the binary of alive/dead) rather than their own stories of life (and its end). Rarely do we get to see the all-too-human desires (taboo or otherwise) that circulate around the elaborate assemblage of care, treatment, life and death. This book attempts to diminish that vacuum. It is not a book about disease, nor about survivorship as an individual practice or pursuit. Rather, it is about survivorship as a relational, cultural, economic and political assemblage that inflects relations of illness, affliction and care.

6 Introduction

FIGURE I.1

‘A day in the life/Walking the mile’. Photo by research participant, 2016

In embarking on this critical sociology of survivorship, we do not seek to displace the individual as the centre of a cancer experience, nor to diminish the vitality of the individual and the varied and creative pursuits of healing and longevity. Rather, we take aim at the collective social structuring of these very practices, and how cancer survivorship is beset by a wide range of tensions – for example, between individual autonomy and collective coercion, collective desire and individual suffering (see Seale, 1998). More importantly, we examine the place and role of suffering (whether in death or in the pursuit of more life) in the cultural and medical milieu that surrounds cancer survivors – that we all variously participate in producing and perpetuating (Dragojlovic & Broom, 2017). In this sense, cancer survivorship becomes a vehicle through which to explore the structuring and normative forces of living in late modern societies, societies that seem often to find life extension (at all costs) desirable and mortality (however inevitable) deeply troubling. So how does one examine survivorship as we have described it? In writing this book, we interviewed a wide range of people living with cancer, their families and

Introduction

7

their health professionals. We also gave many of our participants cameras and diaries. This person-centred approach to understanding cancer survivorship aimed to unsettle an epistemological legacy of cancer as framed through clinical constructions and survivorship as externally quantified or quantifiable. We considered this particularly important in an era of ever-expanding techniques of quantification and measurement in health and beyond. As we mentioned before, within this context, the value of human life so often becomes inextricably tied to particular concrete measures, in­ cluding time (remaining), disease progression and (scales of) quality of life. Yet human subjectivity can only ever be partially encoded by such instruments of bio­ physical and psychosocial measurement. Here we foreground those aspects of the experiences of cancer survivorship that resist conventional encoding. Alongside the disease-centred approach that pervades the cancer care industry, another dominant framing that pervades cancer, and which we explore throughout the following chapters, has been the individualisation of disease. This is fundamental to the entire scene (MacArtney, Andersen, Malmström, Rasmussen, & Ziebland, 2020; Nagel, 1999; Novas & Rose, 2000). Cancer is seen to inhabit the individual with disease; the individual ‘patient’ remains the central point around which a series of people caring for them (whether family or professional) orbit, and so forth. This is despite the wide range of actors above and beyond ‘the patient’ who meaningfully contribute to how cancer materialises and is made meaningful. That is one reason for our focus on the (collective) practice of survivorship across the following chapters, rather than viewing families, clinicians or friends as mere observers or supporters of the ‘cancer patient’ (Broom, Kenny, Kirby, & Lwin, 2019; Lewis, Broom, Kenny, & Kirby, 2020). Rather than a sideshow, nonpatient actors – the nonmalignant (though not always benign) others – are also part of the main act. This forms our relational approach to cancer and survivorship, in which we attend to the complex entangle­ ments that make cancer (and life or death) matter and that bring certain emotions to the surface (for example, hope and optimism) while making sure that others remain well buried (for example, dread, grief and resignation). Most importantly, we wish to reveal the things that matter to those who live with cancer and are often lost in the cultural momentum underpinning the survival (at all costs) narrative.

Survivorship The etymology of survivorship gives us a useful entry point into its critical analysis. The idea of the ‘survivor’ has a reasonably long history (circa 1625) and originated as a legal notion that was centred on succession within families (that is, estates; MerriamWebster, 2020). This legalistic origin of the word then spawned a much broader set of uses within our constantly evolving cultural milieu. The most common use now is in terms of being a survivor of something – for example, assault, a disaster or, in the case of this book, cancer (Kaiser, 2008). This particular construction of ‘the survivor’ has considerable importance for us. The contemporary survivorship subject position – a survivor identity, if you will – is very much tied to a particular thing (in this case, cancer) and practice (transcending it, or moving beyond it; Darabos & Ford, 2020;

8 Introduction

Tilkin, Vander Haegen, Etienne, & Durieux, 2019). In this sense, the ‘survivor’ is both a subject position and a temporal idea(l) oriented simultaneously towards the past event (diagnosis) and future possibility (survival). As a cultural category (or way of ordering), it allows people to be grouped, classified and categorised. People become survivors of cancer (or don’t). This places disease once again firmly centre stage; the person/group becomes defined by a particular relation with this biophysical entity, cascading outwards to inflect social relations among cancer/disease/the person/their people/the community/care. As in many other contexts (for example, trauma and abuse, as outlined by Zivkovic, 2020), the survivor as a cultural category becomes important for the ongoing moral positioning of subjects (as successful, unsuccessful or otherwise). The idea of survivorship is thus, as we will see in the following chapters, imbued with particular forms of normativity (culpability, virtue and everything in between), which subtly yet powerfully govern affected subjects. Yet how survivorship governs bodies, identities and social relations is not uniform. Instead, it has mixed effects, which tend to mirror social injustices, because the capacity to enact socially sanctioned versions of what survivorship entails (being exceptional, for instance) is varied across persons, groups and cultures (Rosner, 2017). Survivorship as a cultural production thereby celebrates achievements and produces failed subjects, in turn illustrating the social production of what are often assumed to be inherent qualities of people (character, capability, worthiness). In this sense, survivorship is a form of moral ordering that carries essentialist assumptions about character, reinforcing en­ during social structures and hierarchies. Within an individualising moral framework of health and illness, cancer and a person’s experiences of it are often read as mirroring the particular ‘qualities’ of the person (Seale, 2002). The broader cultural tendency is thus, we posit, to view ‘survival’ (and one’s performances therein) as almost entirely devoid of context. That is, despite being structured and ordered, with many of the ‘oppor­ tunities’ or ‘achievements’ conditioned by one’s social position and the broader societal level of health services available, cancer is all too often imagined in highly individualised ways, with survivorship seen as the result of strong people, resilient personalities, de­ termined characters and so on (Seale, 2001; Sinding & Gray, 2005). Over the past four decades, scholarly interest in the question ‘What is a survivor?’ has intensified, in recognition of the various groups ‘lost’ in the survivorship milieu (Nalley, 2020; Surbone, Annunziata, Santoro, Tirelli, & Tralongo, 2013). If we look back across the mid to late twentieth century, cancer survivorship was largely, if not exclusively, constructed as those who had been cured of cancer (Hebdon, Foli, & McComb, 2015; Marzorati, Riva, & Pravettoni, 2017). It was primarily a clinical category related to disease recovery. This was not necessarily the intention of the clinical or oncological community at the time, who did in fact emphasise the spectrum of survivors across disease stages (Mayer, Nasso, & Earp, 2017; cf. Mullan, 1985). Yet for a variety of reasons, the ‘cancer survivor’ in the medical and cultural imaginary was largely viewed as after treatment and after disease. As we have written in other contexts, much of the situation in oncology mirrored the broader problem in medicine of reconciling the dogged push for life extension with awareness (even acceptance) of death and dying (e.g., Broom, 2015). In this sense, cancer survivorship

Introduction

9

is articulated as a shifting but relatively coherent set of (normative) values around resilience, longevity, persistence and individual successes. While those working across the social and behavioural sciences have sought to recast survivorship as beginning at the moment of diagnosis – so as to include those living with cancer as survivors too (see Berry, Davis, Godfrey Flynn, Landercasper, & Deming, 2019) – the term ‘survivorship’ continues to carry much of its original baggage, a situation we chal­ lenge in this book. One of the problems of the postdisease model of cancer survivorship is that it does not capture the extensive and increasing cohort of people who are living with cancer, though they will never be ‘cured’ or ‘survive’ it, even if they live to their fullest life expectancy (see Merollini, Gordon, Aitken, & Kimlin, 2020). This cohort of terminal survivors disrupts the cultural desire for cure – to finally prevail in the war on cancer – and requires a fairly thoroughgoing reassessment of what constitutes success (and what is of value). Recognition of this broader cohort of ‘survivors’ has forced the field of oncology, albeit only relatively recently, to reposition ‘survivor­ ship’ to include all spheres of the lived experience of cancer (Berry et al., 2019). Of course, the enduring cultural baggage of survivorship has not disappeared. It is not as simple as declaring that all people living with cancer are now, in fact, ‘survivors’ too. There remains a significant clinical legacy and an engrained cultural sensibility to contend with. That is, the disease-centred roots of survivorship, as we shall show, have given rise to an enduring cultural formation reflecting the desires of humanity to live on, the discontents of the individualisation of disease, the normative expectations of the collective, the clinical and cultural avoidance of death, and the ambitions of a series of professions to master disease. In this sense, survivorship is changing, but always in the shadow of its own history.

Why a Sociology of Cancer Survivorship? Despite the ubiquity of cancer, its status as a social, cultural, relational, economic and political phenomenon is not well understood. Cancer accounts for a significant proportion of the contemporary global burden of disease (Global Burden of Disease Cancer Collaboration [GBDCC], 2017), yet it has received limited attention from social scientists in comparison with areas such as the sociology of mental health or chronic illness. This is likely to do with a tendency in the social sciences to focus on the more ‘social’ conditions, in contrast to the seemingly concrete biophysicality of cancer (e.g., Dean et al., 2018). This, in many respects, makes cancer an even more interesting site for social scientists to highlight the relevance of the social world that is often eclipsed by a disease-centred focus on the biophysical. While classic social science texts have revealed cancer survivorship as a social process (e.g., Frank, 2002, 2003), and more contemporary research has provided critical insight into the social and cultural mediation of survivorship (e.g., Bell, 2010, 2013; Bell & RistovskiSlijepcevic, 2013; Brown, 2015), recent shifts continue to change what a life with cancer looks and feels like ( Jain, 2007; Mathews, Burke, & Kampriani, 2015), requiring new and sustained investigation (e.g., Jain, 2013; Keating & Cambrosio,

10

Introduction

2012; Olson, 2016; Stacey, 1997). But why do we need a sociology of cancer survivorship now? First, things are changing rapidly. Despite therapeutic advances over the past few decades, cancer diagnoses have increased considerably, with more and more people now living-with cancer rather than surviving beyond it (Alfano et al., 2019). Developments in novel cancer therapeutics, including the recent surge in targeted treatments and immunotherapies, which we examine in Chapters 6 and 7, are dramatically changing the experience of cancer and, in some cases, significantly increasing time spent with disease (Bashore et al., 2020). This increases the im­ portance of examining the evolving social practice of living with, rather than necessarily beyond, cancer (Kenny, Broom, Kirby, Wyld, & Lwin, 2017), with a focus on the (often contested) meanings and experiences of such things as caus­ ality, waiting, uncertainty, hope, wilfulness, obligation, responsibility and the search for healing. Throughout this book, we hyphenate living-with as shorthand for this set of transformations, and to highlight the evolving social practices that have accompanied them over time. Second, the prevailing and persistent model of the individual ‘survivor’ has thus far escaped serious scrutiny. As is particularly evident in Chapters 4 and 5, the individualisation of cancer survivorship obscures the constitutive collectivities that make up the scene. Our agenda in this book is to further disrupt the dominant representation of cancer as it is frequently cast in disease-focused or individualised terms. In particular, we embark on an analysis that captures the collective acts of cancer and survivorship and accounts for (and shows the effects of) relationality in everyday illness, healing and recovery. We view this as crucial so that we can understand how hope, wilfulness, obligation, responsibility and healing are rela­ tional enterprises, which, paradoxically, are made opaque by the individualisation of affliction (and recovery). In critically exploring survivorship as relational, we delve into some core theoretical debates in sociology, including the vitality of collectives, the potency of subjectivity, the entangling of the material and affective, the coerciveness of optimism and so on (e.g., Adams, Murphy, & Clarke, 2009; Ahmed, 2004a; Berlant, 2011; Broom, 2009a, 2009b; Petersen, 2015). Third, the field of cancer survivorship needs a stronger sociological voice. Cancer survivorship is now a major industry in cancer care internationally, or­ ientating therapeutic practice, driving investments, shaping institutions and in­ flecting therapeutic encounters. Yet there have been few attempts to understand its assumptions and normative underpinnings and to derive such understandings from patients and families. This book thus provides a sociological response to the transnational momentum surrounding cancer survivorship, but gives pause to better understand the complex ripple effects of survivorship as a social practice – its productive facets as well as its oft-concealed pernicious impacts. Of course, we do not wish to deny the potential of a survivor script, narrative or identity. Rather, in pursuing a critical account we seek to allow for a wider range of possibilities than is currently accepted within the survivorship milieu. This book is a journey into the contemporary world of cancer, focusing on the

Introduction

11

varied and nuanced narratives of those currently living-with cancer and the challenges of navigating the wide-ranging and often paradoxical normative social forces therein. In the pursuit of a sociology of cancer survivorship, we seek to hold space for the vitality of the human desire for survival, while also interrogating the complexity (and even duplicity) of survivorship as cultural practice. This book draws from a broad spectrum of social theory to explore the themes of survivorship and subjectivity, survivorship as relational and survivorship as innovation. These themes provide a series of conceptual pillars for the chapters that follow.

Survivorship and Subjectivity While it may seem obvious to foreground subjectivity within survivorship, this has rarely been the case. The assessment of disease or illness as separate to the person dominates modern medical practice, with nonclinical experiences often sidelined by an epistemology which ignores and compartmentalises subjectivity. In this book, we draw on the sociology of emotions, or affect (Ahmed, 2004a, 2004b; Blackman, 2012; Wetherell, 2012), among other traditions within the interpretive social sci­ ences, to explore how the lived experience of cancer is at once embodied and ex­ perienced in relation to a wide variety of historical, social, political and economic forces (Stacey, 1997; Steinberg, 2015). This is illustrated nicely in a photograph taken by Dean, a forty-two-year-old man living with advanced cancer (see Figure I.2). Captioned ‘Peace’, the image is of a fentanyl patch used to treat severe pain, and speaks to much more than cancer as the lived experience of the individual. Survivorship-as-subjectivity points to the complex nexus of affliction, technologies, pharmaceuticals, affect, embodiment, sociality and care. Drawing on authors in affect, gender, feminist and cultural studies (e.g., Ahmed, 2000, 2014; Blackman, 2012), and those working in science and technology studies (e.g., Barad, 2007, 2010, 2014), we pursue a conceptual understanding of subjectivity-in-cancer as entangled across a vast assemblage of individuals, bodies, things, ‘others’ and their respective social worlds (see also Bell, 2010, 2013; Bell & Ristovski-Slijepcevic, 2013). This approach sits in contrast to much of the biomedical scholarship on cancer in that it seeks to explore the complexity of the cancer experience both in and beyond the clinic, within and be­ yond the affected body, and situated within a broad set of social relations. Ontologically speaking, much work on cancer mirrors our disciplinary divisions around feelings, bodies and worlds, which have contributed to an enduring separation between affect (emotion) and effects (of treatment). We can’t, for example, seem to get our heads around the idea (though often patients themselves can) that our histories are enmeshed with (or articulated through) our disease; that emotions make things; and that our cultures/worlds are meaning makers, rather than inherently meaningful. Such complexities are all too often ruled out as factually incoherent (given dominant medical epistemologies of the moment), absurd or both. Yet in the lifeworlds of our participants, as is shown in the following chapters, entanglements are felt, hauntings are real and the assumed logics of life are upended. Cancer is made meaningful and is meaningful in ways that reconnect disconnected spheres and also challenge established

12

Introduction

FIGURE I.2

‘Peace’. Photo by research participant, 2016

disciplines and institutions. Such reconnections have mixed and often uncomfortable effects; and the narratives shown across the following chapters reflect this uneasiness about assembling, disassembling and reassembling. Acts of meaning-making, parti­ cularly those that push against formalised medical knowledge, create tensions (in bodies, between bodies and in clinics), placing clinical ‘realities’ (such as terminality, futility and curative possibilities) in a stand-off with subjective experiences. Such tensions, as we show in the following pages, give rise to practices of resistance as vital and potent acts that disrupt and challenge expertise and are often sidelined in the broader scene of cancer.

Survivorship as Relational The second critical concept on which we draw in this book is that of survivorship as relational (Bandelj, 2015; Roseneil & Ketokivi, 2016). That is, we explore how

Introduction

13

cancer survivorship is intertwined with people’s lives, relationships and communities and materialised in the context of care. This includes a focus on how cancer is en­ meshed within social ties and enacted iteratively over time between people living with cancer and their relational others. Our focus on relationality articulates the inter­ connections between social dynamics around care (Broom, Kenny, & Kirby, 2020), obligation (Sachs, 1996), reciprocity (Kenny et al., 2020), vulnerability (Broom, 2009a), stigma (Chapple, Ziebland, & McPherson, 2004), shame (Probyn, 2004) and recognition (Broom & Tovey, 2007). On one level, this relationality seems rather obvious. People living with cancer rarely do so alone: those around them have a significant impact on their lives, disease experience and, often, recovery. But our focus on relationality extends well beyond a recognition of the relationship between in­ dividuals involved in giving and receiving formal and informal care (Broom, Kirby, Kenny, MacArtney, & Good, 2016). In conceptualising survivorship as relational, we ask how cancer is collectively materialised and enacted across a range of actors, settings and relational contexts (e.g., Broom & Tovey, 2008a, 2008b), and how this gives rise to an ontology of disease that is distinct from the dominant biomedical one. In thinking relationally, we ask, How is disease collectively (re)made? How do re­ lationships inflect the nature of disease and recovery? How does illness and affliction shape or disrupt our understandings of temporality, our orientation towards the future and anticipation of our own and others’ mortality? Drawing on work across sociology, social studies of science and the humanities (Barad, 2007, 2010, 2014; Charmaz, 1990; Chattoo & Ahmad, 2008; Derrida, 1994), we explore the significance of notions of interdependence, intra-action, co-production, co-construction and the meanings within encounters (between technologies and people, between experts and patients, and between the afflicted and their carers). As we show in Chapters 4 and 5, these encounters involve eerie connectivities and coercive forms of estrangement including moments of intimacy and sites of domination and oppression. Some of these themes are illustrated in Figure I.3, a photo taken by William, a man in his fifties living with a form of neuroendocrine cancer, who is shown holding his new grandson’s feet. As he explained to us, this represented the ‘circle of life’. While he was struggling with a diagnosis of incurable cancer and possibly facing the end of his life, his grandson was just entering the world, beginning his. As illustrated by William’s reflections, survivorship is always about others too. ‘They’ are unavoidably part of the subjectivities of survivorship; it is a collective product – contingent and intersubjective. A new set of concepts are thus needed to embrace such a relational ontology, which places emphasis on cancer as emergence or becoming, rather than merely a state of (diseased) being (see Chapter 1). This also means exploring, as we do, the complexity of connections (or disconnections) between people and things. For ex­ ample, what is a scan, which may offer a picture of disease to some and hope or disappointment to others? What does it mean and to whom? And what does it ac­ complish? What work do this representation and accompanying prognostic evidence really do? Can we dismiss the various, and even contradictory, consequences of such things, and if so, what do such dismissals accomplish themselves, and for whom? What does the particular assemblage of the prediction, the representation, the expert, the

14

Introduction

FIGURE I.3

‘The circle of life’. Photo by research participant, 2016

patient and carers, and the disease materialise? With what consequences? And how could it be otherwise? We see a critical sociology of cancer survivorship that adopts a relational ontology as vital to responding to these questions of how things are held together in the way they are, for what purpose, and to what end.

Survivorship as Innovation While cancer has been with us forever, cancer treatment has progressed rapidly in recent years, with newly developed ‘precision’ therapies now available across an increasing number of cancer types and patient groups (Bruno et al., 2020; Syn, Yong, Goh, & Lee, 2016). Although oncology has, for quite some time, been both a field of scientific inquiry and a profit-making industry, in the current environment this has taken on a new direction with accelerated developments in the ‘science’ of cancer and un­ precedented capital investment in biotech and related innovations. Rising from the ashes of the diminishing returns of cytotoxic therapies, precision medicine is the hope on the horizon for cancer researchers, clinicians and many patients. But it also offers significant complexities (see Figure I.4). As we explore in Chapters 6 and 7, the era of persona­ lisation and precision introduces considerable complexities for all stakeholders and in everyday practice (also see Prainsack, 2017). We situate these developments within sociological theories around hope (Brown, 2015; Petersen, 2015), uncertainty (Davis, 1960; Green, 2009), professional ambitions (Deleuze & Guattari, 1987; DeVault, 2008) and institutional power (Bourdieu, 1991; Derrida, 1994). The global research and development and pharmaceutical industry is fundamentally shaping the individual experience of cancer and hopes for the future in everyday living (GBDCC, 2017). In this sense, we offer a critical sociology of survivorship-as-innovation and of the practice of care (for cancer clinicians) as a site of

Introduction

FIGURE I.4

15

‘Surviving innovation’. Photo by research participant, 2016

considerable tension and paradox (relieving suffering versus engendering hope). Survivorship-as-innovation speaks, in turn, to the conceptual importance of incorporating the broader political economy of care (Dragojlovic & Broom, 2017; McCabe et al., 2013; Sayer, 2000) into a new conceptualisation of cancer survivorship, which connects the cancer survivorship lobby, technological entrepreneurialism, political ambition, the pol­ itics of philanthropy, and individual desire – with recognition that they all intersect and produce (and are produced by) each other. The individual practice of cancer survivorship thus emerges from, helps to sustain, but also eventually undermines the global flows of innovation and technological transformation. The body is inscribed by – but as we see, also resists – ways of innovating. In this sense, cancer subjectivities articulate a tussle around the ways in which we organise our societies (Bell, 2010, 2013; Bell & RistovskiSlijepcevic, 2013; Feuerstein, 2007; McCabe et al., 2013). This book unpacks ‘cancer survivorship’ as at once a biophysical pathology, a subject position, a social practice, a perceived human struggle and a normative imperative of our contemporary social milieu. It exists within a particular his­ torical, economic and political context giving rise to certain expectations and imperatives emergent from relations of citizens to the modern state, to their fa­ milies and as a response to their evolving (moral) responsibilities. As we explore in detail in the following chapters, it is thus part of the neoliberal social contract to be a productive member of society, just as surviving (often at significant cost to ‘others’) is taken to be a uniquely human drive in the cultural imaginary. And it is for these reasons that we must continue to develop a critical sociology of cancer: the de­ tailed, nuanced accounts of people living with cancer provide unprecedented insight into these complex dynamics. By pairing participant accounts with a so­ ciological lens that offers a unique view connecting the micro and the macro across the social world, we hope to advance a truly person-centred account of contemporary cancer survivorship.

16

Introduction

An Outline of a Sociological Program of Research on Cancer This book relies on several periods of fieldwork undertaken in Australia from the late 2000s to early 2020. The first period was in Queensland, in the late 2000s, and involved a series of qualitative studies focussed on the experiences of the following cohorts: advanced cancer patients in the community; oncology professionals (doctors and nurses); and patients with a range of illnesses in the last few weeks of life receiving in-patient hospice/palliative care. The second period of qualitative data collection (2015–2019) was focussed on cancer survivorship from the perspectives of patients, their carers and cancer care professionals in New South Wales and Queensland. Finally, we embarked on a period of work on the lived experience of precision therapies in cancer care, from the perspectives of patients and cancer care profes­ sionals (2019–present). We used mixed qualitative methods across all these periods of data collection, including qualitative interviews, focus-group discussions, solicited diaries and photo elicitation. Participants are identified throughout this book using researcher-assigned pseudonyms or their professional role, where appropriate.

Qualitative Interviews With Patients, Carers and Professionals, and Focus Groups In collecting stories of contemporary cancer survivorship, we spoke to a wide range of people including over 300 ‘patients’ living with cancer, their nominated ‘carers’ or people close to them and cancer care professionals, including doctors, nurses, and allied health and clinical trial coordinators. They came from all walks of life and had experience with almost every type of cancer across almost every decade of (adult) life. The overarching aim was to explore ‘cancer survivorship’ as a cultural formation and as a lived experience with intertwining affective, inter­ relational, social, institutional and discursive dimensions. Our analysis throughout this book is deeply informed by all periods of fieldwork taken as a whole, which helped to illuminate the subjective, relational and temporal dimensions of – and the various paradoxes and tensions that exist within – contemporary cancer sur­ vivorship. The interviews with people living with cancer feature prominently in Chapters 1 and 3, where people’s articulations of their story of cancer help illu­ minate both the processual nature of and the central role of attitude in survi­ vorship. Interviews with patient–carer dyads were a novel way at getting at different narrations of shared experiences, helping to illustrate the points of continuity and discontinuity within collectives. They ground our analysis in Chapters 4 and 5, which focus on cancer survivorship and the dynamics of care. Building on these interviews, we also undertook focus groups with health professionals to further explore how cancer care is evolving at the frontier of precision. The overarching aim in these was to explore how the turn to precision in oncology is being understood at the bedside (and beyond) through a critical sociological examination of the experiences, meanings and value of these changes

Introduction

17

for the practice of oncology. Our focus groups included oncologists, junior doctors, nurses, cancer care coordinators and clinical trial coordinators, allowing us to approach participants’ views of issues in precision medicine such as value (how it is assessed), access (how precision is mediated), interests (what is perceived to influence practice), encounters (in their day-to-day work) and benefit (in all its manifestations) from different professional perspectives. Using a focus-group format enabled us to encourage these cancer care professionals to reflect on the changes that are shaping the field and, as a result, cancer survivorship. It also enabled them to situate their own experiences within the broader transformation of the field that is still, in many ways, nascent and evolving. In Chapters 6 and 7, we draw on these focus groups, as well as interviews with cancer care professionals, patients and carers, to explore how recent innovations have inflected survivorship.

Solicited Diaries A technique that we have spent considerable time developing over nearly two decades now is the solicited diary as a means of exploring the lived experience of cancer (see Broom, Kirby, Adams, & Refshuage, 2015; Broom, Kirby, Good, Wootton, & Adams, 2014; Broom & Tovey, 2008a, 2008b). The solicited diary does things that we don’t get in the one-on-one interview: it pushes away the researcher (to an ex­ tent), disrupts the organised character of the interview (agreed time, performative circumstances) and reveals the temporalities of affliction and the lived experience. The diary is a conversation – indeed, diarists often speak to us through the diary – but it is a different story, less anchored in a particular moment, that allows the undulations of day and night, good moods and bad moods, and everything in between, to emerge. The diary is a means of upsetting our established epistemologies, but, as we shall see in Chapter 2, it also unsettles dominant ontologies of disease. In this way, it is a powerful means for exploring cancer over time and through a very different temporal register.

Photo Collection and Elicitation Finally, and in pursuit of a vision of cancer survivorship ‘through the eyes of’ those living it, we used photo elicitation, giving participants cameras to explore their day-to-day experiences during our second period of data collection in 2015–2019. Following an initial interview, these people took anywhere between a handful and a few hundred photographs to ‘show’ us what they were going through, what was important to them during this experience and what ‘mattered’, capturing not just the narratives or articulations of survivorship but some of the mundane materiality as well. We then met again to discuss participants’ photographs with them. These successive interviews helped contextualise the visual representations of living-with cancer and informed our subsequent visual and narrative analysis of the photo­ graphs in terms of what they represent, as well as what they mean to people. The participant-produced photographs sometimes yielded striking themes, providing openings into entirely new lines of conversation that may not have been broached

18

Introduction

in their absence. In a similar way as with the diaries, our hope was that the process of taking photographs would decentre the researcher and give participants the opportunity to steer the analysis in directions of their choosing. This was borne out in our subsequent conversations, helping to broaden our analysis in mean­ ingful and sometimes unexpected ways.

Chapter Outline Chapter 1, ‘Bodily Becomings’, focuses on cancer as much more than the diagnosis of a diseased bodily state. Instead, it advances an approach to cancer as a social practice – one that is infused with a wide variety of social dynamics that unfold over time in the lived experiences of our participants and their families. Focusing on being and becoming, embodied and biomedically codified ways of knowing and feeling disease, and the temporalities across which becoming a cancer survivor takes hold, this chapter upends some of the key ontological categories in the field of cancer research. We propose a more temporally uneven and collaboratively conjured understanding of cancer, in contrast to the standard linear progression through diagnosis, treatment, prognosis and recovery or death. Our approach places more emphasis on co-production, making meaning, assembling matter and reconciling relations as driving forces in cancer care. Chapter 1 thus stresses the importance of the concepts of relationality and temporality, which are elaborated in the subsequent chapters. Chapter 2, ‘Waiting, Hauntings and Surviving’, makes use of a novel approach to qualitative research – solicited diaries – to explore behind-the-scenes accounts of cancer in everyday life. This approach involves participants recording day-today events and feelings, which we draw upon to reveal the importance of the practice of waiting and hauntings in and of the present (Broom et al., 2018). We tie together social theory that analyses the disruption of the smooth passage of time (e.g., Gordon, 2008, 2011 on spectres and ghosts) and temporal registers of underrecognised importance (e.g., Schweizer, 2008, on waiting). We use these ideas, and the accounts of our participants, to make visible and recognisable ‘cancer survivors’ who do not fit the norm and whose experiences are not captured in the dominant cultural imaginaries of cancer survivorship. In turn, we show how survivorship is an eerie experience, inflected by (concealed) histories in the present. In Chapter 3, ‘Malignant Attitudes’, we take on the ‘attitude industry’, as it were, and its role in the production of the transcendence of attitude within the cultural imaginary. We focus here on the deeply mixed feelings that our partici­ pants have toward the various facets of attitude (that is, positivity, negativity and everything in between) that they deploy, contest and resist in the context of their experiences of cancer. We seek not to dismiss attitude nor to reify it (or people’s accounts of it); rather, we ask how it plays a role in the choreography of survi­ vorship and how it makes its way into clinical encounters, family struggles and individual and collective psyches. We interrogate what role sociology might play

Introduction

19

in recognising the potency of attitude in everyday life while challenging its nor­ mative and even malevolent potential. In Chapter 4, ‘Entangled and Estranged’, we draw on accounts emerging from patient–carer dyads (two people narrating cancer in often divergent ways), and how they articulate the sociality of survivorship. This design, and our subsequent use of Baradian social theory (see Barad, 2007, 2010, 2014), illustrates the ways in which we are enmeshed with, and yet estranged from, caring relations – as in­ dividual agents and also as part of collectives (Broom et al., 2020). In this chapter, we focus on how cancer is made meaningful through the relations that make it so, and how this results in a series of tussles over how to approach living (and caring) with disease. Our analysis here draws particularly on Barad’s ideas around the intersections of matter and meaning, and the wide variety of uncanny quantum entanglements therein (see Barad, 2010). In Chapter 5, ‘Collective Emotions, Affective Relations’, we focus on emotions in the context of cancer as a collective practice, despite how paradoxical this may seem or sound. Drawing on work in the sociology of emotions and gender studies, and building on key scholarship in the affective turn in the humanities (e.g., Wetherell, 2012), we explore how relations of hope, optimism and dread (however sidelined) are collective relations that contribute to the affective economy of cancer survivorship. Drawing on the work of key scholars such as Ahmed (2000, 2004a, 2004b, 2014), Sayer (2000, 2005, 2019) and Berlant (2011), we develop a framework for viewing survivorship as a moral and affective economy, though one with certain disciplinary effects. By treating the emotions around cancer survivorship this way, we are able to trace the exchanges that result in patterns of accumulation around certain (normative) emotions such as hope, optimism and pursuit of treatment and cure, and the devaluation of others, such as dread, despair and capitulation. In Chapter 6, ‘Enchantment, Acceleration and Innovation’, we examine sur­ vivorship within the context of innovation and the swiftly changeing opportu­ nities for survival (in some cancers) in the oncological field. Using the example of the rise of precision medicine, we examine how survivorship, and the lived ex­ perience of it, is deeply embedded in the ambitions and projects of science and innovation and the forms of investment and capital that circulate within the on­ cological milieu. That is, we look at survivorship as an important imperative in the context of biotechnological and pharmacological developments within global capitalism, and how this complexifies clinical practice, producing contestations around value, ethics and care, and tensions around what innovation offers versus what it disavows. This chapter thus allows us to situate everyday survivorship within the context of professional projects, and to examine how it is refracted in the day-to-day experiences of giving and receiving care. In Chapter 7, ‘Participation and the Making of Possibility’, we build on Chapter 6 but with a focus on patient, carer and professional perspectives, focussing on the ways in which trials, participation in science, and the broader push towards hopefulness intersect, including how participation is an entangle­ ment of desires, projects, economies and interests. Holding together the potential

20

Introduction

for and of science and the often opaque ways in which trial participation and knowledge construction emerge from broader interests (of professionals, states and private investment), we focus on the political economy of hope, and how futurism is bound up in the entanglements of individual and collective desires, capital ac­ cumulation, expert ambition and cultural taboo. In the concluding chapter we outline an agenda for the future study of cancer survivorship as a social, political and economic relation. This includes underscoring the importance of areas of enduring and considerable neglect (that is, forms of multi­ morbidity, and work focused on the Global South). We outline how a relational ontology of cancer survivorship may be used to inform better policy and practice, and its importance for the present and future research agenda in order to sustain complex and nuanced knowledge production across many different fields of research.

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1 BODILY BECOMINGS

We start this book with a series of reframings of cancer as something more than merely an embodied pathology to include the broader social, ontological and temporal contexts of affliction. In this sense, cancer is much more than a diagnosis of a diseased bodily state. Rather, it is also a social practice that, in many ways, mirrors (albeit in incomplete and uneven ways) a range of dynamics that permeate many other facets of social life. Specifically, we focus on what and how cancer is considered to be, how it (pre) occupies bodies and social relations and, perhaps, how it might be otherwise. This leads us to explore cancer as an emergence that is identified and ‘known’ through diagnosis and then treated through a range of technologies and forms of care, wherein the ‘cancer patient’ and ‘survivor’ become contested subject positions that, in and as practice, extend far beyond the disease-centred approach to survivorship. What does it mean to talk of cancer as a social practice? This framing complicates the idea of malignancy as a discrete, independent entity, diagnosable at a particular point in time and predicated on a journey with a discernible start, middle and end, culminating in either death or redemption through cure. Further, it calls into question a range of standard dualities that arise around cancer: of cancer as a disease of the body (versus mind), of cells (versus environment) and of individuals (versus collectives). While much biomedical and even psychosocial research takes such dualities as its starting point, or unwittingly reinforces them through attempts at standardisation and reproducibility, here we take a different approach. This is because the tensions between such dualities quickly become apparent in the accounts of living-with disease and affliction in practice. Our participants’ stories and experiences are not so neatly contained within the often binarised diagnostic and/or cultural categories that pervade malignancy. Instead, they raise important questions about how the relationship among experts, carers, patients and diseases might be reconfigured to accommodate more nuanced ways of understanding and living-with disease. Dominant models of cancer survivorship, as outlined in the introduction, have (perhaps inadvertently) reinforced the fixed nature of disease as discrete and have centred the remit of survivorship on clinical categorisations – for example, benign versus malignant, disease progression versus remission, and so on. From a biomedical point of

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view, the discrete ontology of disease is firmly institutionalised within the practices of oncology and cancer care (Althubaiti et al., 2019). Within these domains, disease ‘begins’ (and disrupts life) at the point of diagnosis (Bury, 1982; Charmaz, 1990). Scans are read and staged according to the advancement of disease. Biopsies and blood work return pathology results that fall within normal ranges or are deemed ‘abnormal’. The efficacy of treatment is gauged by repeated scans, blood tests and now molecular tests, which measure tumour progression or regression or, for the lucky ones, declare a person ‘clear’. According to a fairly recent reformulation of the definition, ‘survivorship’ is now considered to begin from the moment of diagnosis (Berry, Davis, Flynn, Landercasper, & Deming, 2019). From there, the uncertain temporal arc of cancer survivorship is predicted by aggregated statistical survival curves (Kenzik, 2019). These numerical abstractions take what is a binary outcome for any single individual (that is, life or death) and rewrite it as a relative risk or probability distributed across a population (see Jain, 2007). In one sense, this can confer a sense of predictability, intelligibility and manageability for those going through it. Certainly, the categories and statistics that proliferate around cancer project a sense of order amid the chaos of disease. Yet as anthropologist S. Lochlann Jain has described it, such enumerations can be at once ‘stunningly specific, and bloodlessly vague’ (2007, p. 78), projecting a thin veneer of certainty while simultaneously hollowing out any tangible meaning. In this chapter, we highlight how a discrete ontology of cancer underpins dominant approaches to cancer (including survivorship curves), and belies a much more subtle, nuanced and often multivalent experience for those living with and alongside cancer. This is not because we want to undermine the hope or sense of control that statistics, projections and prognosis may confer. Instead, we wish to bring into focus the oft-obscured contradictory consequences they have, and the ways in which they variously inflect the practice of living-with cancer.

Practice, Being and Becoming The apparent biophysicality of cancer has often obscured analysis of its unruly characteristics, its multidimensionality and its various temporal disruptions. Here, drawing on a range of theoretical ideas, we reveal the ‘messiness’ of the practice of living-with cancer that numerical abstractions and binary categories tend to obscure. For example, the notion of becoming, as articulated by Blackman (2020), we argue, helps us move beyond thinking about what is in any particular instance or context to thinking about how things are made to be through various practices. Appropriately aligned with our focus on cancer, Blackman centres her analysis on the body. Here, the idea of becoming, as well as other work emerging from the social science of practice (see Johnston & Barcan, 2006), helps shift our understanding of embodiment from a static bodily state to an ever-unfolding process. She puts it in the following way: The idea of the body as simply something that we both have and are is displaced in this perspective as the focus shifts to what bodies can do, what bodies could become, what practices enable and coordinate the doing of particular kinds of

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bodies, and what this makes possible in terms of our approach to questions about life, humanness, culture, power, technology and subjectivity. (Blackman, 2020, p. 1) In her efforts to shift our thinking about the nature and capacities of bodies, Blackman is not alone – Law and Mol (2002) and Despret (2004) similarly argue that our bodies are not simply containers for human selfhood but rather are always connected to other bodies, technologies, practices and emotions, meaning that humanity is unavoidably interconnected. Notions of becoming, then, add an embodied layer to the broader social science of practice (Law & Mol, 2002; cf. Bourdieu, 1977). Drawing these literatures together helps foreground the interconnectedness of the embodiment of health and affliction with the assemblage of technologies, knowledges and expertise that surround us, all of which work together to help materialise what we think of as cancer survivorship. To focus on what we make, rather than what is, is to do more than entertain a merely academic ‘turn’, or affectation, which may seem unimportant to people’s everyday lives. The emphasis on emergence and action allows us to challenge key tensions around the dualities that are pervasive in cancer care and that, as we show in this book, can alienate the very people living with cancer as well as those who care for them. As we will explore, the divisions and tensions between being sick and being well, living for now and living for the future, even between patient and carer, are often inherently precarious (see Franklin & Roberts, 2006; Tavory & Eliasoph, 2013). In practice, there emerge (productive) frictions between cultural assumptions about such divisions and the break-down of these categories in everyday experiences, which cause a lot of discomfort and suffering. If we think of cancer within the frame of practices of becoming, we can challenge the idea of the static, diseased body (or individual) and the dominant ontology of disease therein. We can ask such questions as: who and what is declared sick when one is diagnosed with cancer, and who is declared a survivor? What forms of practice are productive (for different subjects) within this normative setting? What does it mean to ‘let go’, to ‘hold on’, to ‘give in’, or to ‘give up’? In this way, practice is not merely about the practices of health professionals, laypeople, cancer patients or their carers. Rather, it is the dialectical relation between political, cultural and economic conditions and actors (Foucault, 2008; King, 2002). Most crucially, this approach allows us to ask: how might it be otherwise? This relates to the later section of this book on survivorship as care, where we explore the relations of informal care with a focus on the circulation of affect among patient–carer dyads (Chapter 4) as well as the various normative imperatives that infuse informal relations of care (Chapter 5).

Knowing and Feeling Cancer: Bodies and (Decentring) Expertise A parallel conceptual concern is the ontological politics of cancer and the tensions between the objective (external, abstract knowledge) and the subjective (relating

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to the person). The topic of cancer has been fertile terrain for futile debates between positivism and constructivism, yielding little in terms of our capacity to adopt person-centred formulations of knowing disease without slipping into binaries around disease (body) versus illness (experience) (Chowdhury, 2019). Here we engage with this problem, yet again, but with a focus on how we come to know disease in everyday life. This gets at some of the enduring tensions between person/patient-centred ways of knowing and formalised expertise, as well as how survivorship practice is configured amid these somewhat contradictory perspectives. Such considerations also raise questions around the role of the body as knowing (or indeed, not knowing or rejecting knowledge/procedures), as raised by a wide range of feminist scholars (e.g., see Ahmed & Stacey, 2001; Gallop, 1988; Greco, 2008; Latimer, 2008; Letiche, 2008; Munro & Belova, 2008; Scarry, 1987; Schillmeier, 2008). This is not, as Latimer (2008) notes, an either/or question of mind versus body, but of collective intersections – of carefully considering their coming together, their mutual constitution and the consequences that result. As Blackman (2020, p. 5) puts it: ‘We need to be aware both of the bodily basis of thought and the cognitive component of bodily processes and vice versa.’ While warning against standard mind–body dualisms, Latimer (2008) also warns against reifying a vision of bodies as essential or unmediated knowers. A wide range of scholarship on embodiment and the sociology of the body has explored similar ideas (e.g., Blackman, 2020; Nettleton, 2010; Peggs, 2018; Shilling, 2007; Vannini, 2016) around the intersection of corporeality, sociality and epistemology. This collective body of work raises important questions around what and how bodies know and, crucially in the case of cancer, when they know, especially in relation to diagnosis. This has considerable salience in the lifeworlds of our participants in terms of what is known before diagnosis, and what can and can’t be known afterward. Reconceptualising how we know cancer might help us think differently about traditional divisions between minds and bodies, or between knowing and feeling, so as to better include the kinds of knowing that biomedical knowledge often excludes (see also Kirby, 2014; Wilson, 2004). The medical field is ontologically diverse, and this is worth acknowledging. For example, challenging normative notions of what can be known and how, and decentring the ‘mind’, is relatively common in complementary and alternative medicines (CAM), where the knowing body, for example, is a common reference point (Barcan, 2020; MacArtney, 2016). Such practices decentre both the biomedical expert as the exclusive holder of relevant knowledge/wisdom and the mind as the sole location of cognition within and across persons. Some operating within the (rather diverse) CAM field emphasise the vitality of the body, which transcend ‘treating’ the body as passive or unconscious. More broadly, acknowledging the potential of ‘a feeling body’ that may know much more than the relevant ‘experts’ undermines much of the taken-for-granted wisdom of cancer care. Yet it resonates powerfully with some of the accounts and experiences of our participants. This has significant implications for how we think about the ways in

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which we come to know cancer, and how it is constituted by current epistemic hierarchies. Primarily, it entails acknowledging that the ways in which we commonly understand disease may be partial at best and, more importantly, that patient perspectives make visible some of these partialities and reveal possibilities for how they may be more fully fleshed out. This hierarchy of knowing is important because what becomes known, in many respects, structures what can (and can’t) be done, said and even ‘felt’. This may sound rather radical, but it is not, even within the medical field. The known realms of possibility (to some extent) limit what we aspire to. The ways we know (and feel) cancer provide important insights into both the normative structures that inflect practice and other possibilities of knowing that may exist but are given less ‘airtime’ in the current milieu.

Proximity and Temporality Cancer as an iterative process of emergence – as known and felt – comes together, acutely, as practice. Cancer-as-practice is never an individual endeavour, but emerges from a series of relationships, raising the importance of proximity (Levinas, 1996; cf. Nortvedt & Nordhaug, 2008) to carers, experts, technologies, resources and the full technoscientific assemblage of cancer and care. This gives practice a spatial feel, so to speak, inflected as it is by time. This framing allows us to weave together considerations of affect (Clough, 2010), embodiment (Vannini, 2016), time and connectivities (Mattingly, 2019; Munro & Belova, 2008) with proximity, capturing how subjects and objects experience the pull of one another – albeit variously felt, depending on their material qualities. Proximity is the spatial articulation of power, influence, coercion and resistance. It is more than just closeness or distance; rather, it is constant articulation of submersion in a multiplicity of relationships and our capacity to act in relation to these. As Per Nortvedt and Marita Nordhaug (2008, p. 158) outline: We are constituted by our relationships. We are born into them as well as gradually socialized into them, but they are not unconditionally of our own making. It is the nature of the relationship and the value we place upon it, and have reason to place upon it, that gives rise to our associative duties. The normative implications of proximity are not limited to our relationships with other people. There is also a normative aspect to temporality (our relationship to time) that is fundamentally challenged when a cancer diagnosis comes into view. Adams, Murphy and Clarke (2009), scholars of medical anthropology and science and technology studies (STS), have used the term ‘anticipation’ to describe the active orientation of the self towards the future. Anticipation, they argue, is ‘a moral economy in which the future sets the conditions of possibility for action in the present, in which the future is inhabited in the present’ (Adams et al., 2009, pp. 248–249). Anticipation thus names the feeling of the future (with all its attendant uncertainty) in the present moment. It is a central dimension of the

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contemporary affective space of affliction (see also Sointu, 2016), especially in regard to cancer, where the uncertainty of the future crystallises around clinical diagnoses and prognostic forecasts. The affective dimensions of anticipation, which are set in place by the (implicit) ontological insecurities of advanced modernity (e.g., Beck & Beck-Gernsheim, 2002; Giddens, 1991), are amplified by the (explicit) uncertainties of cancer. The normative implications of anticipation are particularly evident in cancer survivorship, where the imperative to fight, to endure treatment and to persist into the future, as a survivor, is a central, normative trope (Steinberg, 2015). This series of considerations around the ontology of cancer, survivorship as practice and proximity becomes vital for understanding how illness is experienced from a range of different perspectives, what illness is, how it is done (Bell, 2010; Brockmeier, 2009), and the inevitable multiplicity that this entails (Law & Mol, 2002). Here we draw on a wide variety of patient accounts to embrace the multiple, relational and temporal tensions of survivorship-as-practice, with particular attention paid to the forms of normativity that emerge from how it is done currently and how it might be done otherwise.

Dis/embodying Cancer Throughout our interviews with those living with or caring for someone with cancer, participants offered a range of ways of ‘doing’ cancer, in terms of their embodied experience of disease, affliction and care, and recounted various ways of ‘knowing’ and ‘feeling’ cancer and treatment over time. While our analytic approach attempts to destabilise a range of binaries that pervade the cancer and survivorship milieu, such binaries did arise within participant accounts of living-with cancer. How cancer was embodied was one area in which mind–body dualisms were particularly pronounced. This was especially the case when participants recounted their experiences with brain cancer, though it also pervaded a range of other organ-based malignancies. The following excerpt from Karl, a man in his fifties diagnosed with brain cancer, illustrates some of the ways that participants made quite deliberate attempts to disembody cancer, to distance themselves from their (diseased) bodies or to carve off cellular pathology from an embodied sense of self: KARL: I

don’t actually use the word ‘cancer’. In some ways it’s a bit strange. I don’t know. I don’t say I’ve got brain cancer. I say, ‘I’m being treated for brain cancer.’ INT.: For you, what’s the difference between those two? KARL: I suppose, in some stupid way, some people would think I’m refusing to admit it. I’m just saying, ‘I’m being treated for brain cancer.’ When I’m on my deathbed and I’m lying there and I’ve got a morphine drip going down there to try to keep me asleep, then I’ll jump and say, ‘Hey, guess what? I’ve got brain cancer.’ INT.: But now ‘I’m being treated for it.’ KARL: I’m being treated. I’ve been diagnosed with a brain cancer tumour.

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As we can see, for Karl, being diagnosed with, or treated for, a cancerous brain tumour was ontologically distinct from ‘having’ cancer. The way he chose to use the phrase ‘being treated for’ cancer placed greater distance between himself and his cancer than ‘having’ cancer, which he equated with dying from it. In part, this was because the cancer was no longer ‘in’ his body, having been excised during surgery. But at the same time, cancer can also be experienced as something one ‘always’ embodies to some extent, raising interesting questions about the embodiment of malignancy as an ongoing process. As Karl explained: KARL:

It’s been removed. It’s like when you’ve got cancer, you’ve always got cancer. Something’s going to happen, like you go into remission. Remission means they can’t find it. It doesn’t mean it’s not there, and when it comes back, it’s called a recurrence. At this stage, [the oncologist] would probably refer to me as a cancer survivor because that’s what she told me one previous visit. ‘You’ve got cancer, but you’re seen as a cancer survivor.’ Then she goes, ‘But when the tumour comes back, we’ve got to look at this.’ She’s used those words, ‘When the tumour comes back.’ INT.: How did you feel when she said that? KARL: Oh, I just think to myself, ‘Well … I know she’s right. I know it’s going happen.’ I’m sort of thinking, ‘Well. Let’s not think about that.’ The fact is that the MRI last week shows that there is still something in there. It may not be [that] it’s back. It might be just [that] it’s still there and under treatment. We have to see whether the treatment actually removes … There’s still a residue there that wasn’t previously thought. The ‘residue’ Karl refers to could equally be the imprint of malignancy in the tissues of the brain or the affective residue of the presence of cancer in his lifeworld. Either way, and despite the detectability of cancer in his body, cancer was an ongoing material and affective process that mattered far beyond its embodied material presence. In this way, the embodiment of cancer, whether previously excised following surgery or as an ongoing uncanny presence, also raised questions about how cancer is known and felt before and after diagnosis and into the (prognostic) future, however uncertain that landscape may be. While diagnosis may help to explain previous symptoms (like migraines, in the instance to follow), it was also unsettling to participants’ embodied sense of self. This was vividly articulated by Nancy, who was in her late thirties when she was diagnosed with brain cancer: NANCY:

The tumour was … They removed about the size of an avocado. It’s a slow-growing tumour, so it had been there for like eighteen months to two years, they think, and I had been getting migraines. So when I was in hospital, headaches were constant. They put me on [a particular drug], which makes you pretty cloudy, which I’m still on. You’re on other painkillers and you’re on really high amounts of steroids as well. Your

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body is not used it, and I was a very healthy person and not used to feeling, I think, so messed up by the medication, as well as the fact that you’ve got a brain tumour. I had a mass seizure, and I haven’t had one since, but your brain’s just not right. It just wasn’t right. So I was aware of the decisions I was making. They would make it really clear for me, and if I didn’t understand I would just ask, or my sister would explain. Everybody knew there was no option other than surgery. I don’t think I even started processing the enormity of everything until probably at least a month after I was home, and, I think, to a certain degree I’m still processing now, in the fact that I’m not the same person, I don’t have the same life, and that was really hard. INT.: Can you tell me more about that? NANCY: It’s a loss of everything. You go from being a healthy person who walks her dog ten kilometres a day, eats really well, yeah sure, I drink every now and then, but I’m not a massive boozer. I take care of myself and all of a sudden you get a diagnosis that is completely left-field [crying]. I’ve been given an opportunity to learn something else about myself and I just have to keep in that mindset because I can’t go backwards. The disruption to Nancy’s sense of self vis-à-vis cancer was not limited to the moment of diagnosis, but was extended both forwards and backwards through time in iterative dis/continuity with her uncertain future and former ‘healthy’ self. This was also the case for Jane, a woman in her sixties living with metastatic breast cancer. During an earlier encounter with breast cancer, Jane recounted the embodied experience of treatment, rather than the disease per se, as causing the most discernible effects: They hit it pretty hard with chemo, radiation. So there’s a whole gamut of things that you feel for the first time. For a woman, you lose the hair, you lose the breast. Very heavy chemo. I had cognitive problems. Things that were red I would see as green, I got things backwards, and at that time people used to say, ‘There’s no such thing as a chemo brain’, and I was convinced there was, and, to me, it was simple. It was neurological. It was red and green, getting things backwards, but people made me feel as though it wasn’t supposed to be there. I went through a bit of panic thinking, ‘I’m going to lose my mind.’ That, to me, was very important, probably more important than losing the hair or whatever. I thought, ‘I’m getting addled.’ My sister kept telling me I was getting addled. I panicked a bit and then I sort of got a grip on it. It took me about a year. Once I recovered from that, the brain settled back, everything was normal. It was okay. Here, Jane refers to the physical effects of cancer treatment (losing the hair, losing the breast) in a slightly depersonalised/disembodied way. Yet she experienced the cognitive effects of treatment as particularly distressing. In some ways, this was tied

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to the lack of recognition of her experience as valid within the then-current discourses of cancer survivorship, illustrating how normative expectations can set up the conditions under which those who do not conform to them can be made to suffer. As she explains, at the time, so-called chemo brain wasn’t acknowledged as part of the embodied experience of cancer treatment. Interestingly, it was perhaps the tension between what was generally expected/acknowledged by both the medical profession and by our broader cultural discourses around survivorship as valid reactions to treatment, and what Jane actually felt, that caused her the greatest degree of distress. The tensions between normative expectations and people’s lived experiences was pervasive across the interviews. While some participants’ approaches to living-with cancer aligned with much of the dominant survivorship discourse – for example, in terms of embracing positivity (see Chapter 3) in order to maximise the future (see Chapter 4) both for themselves and for their loved ones (see Chapter 5) – for others the disjunctions between widespread expectations and their own experiences raised considerable challenges. This was also the case in relation to their experiences of biomedicine and conventional treatment for cancer, which illustrates the destabilisation of singular ways of knowing cancer discussed in the opening to this chapter.

Knowing Bodies Knowing what was going on in and with their bodies was possibly one of the most fraught dimensions of living-with cancer for many of our participants. For some, cancer came ‘out of the blue’ or was discovered incidental to other, unrelated medical investigations. For others, their cancer diagnosis provided answers to questions of longstanding, if vague, symptoms. Whether in relation to the initial emergence of cancer within their lifeworlds or to the iterative challenges of treatment, participants discussed a variety of ways in which they did or did not know or feel what was going on in their bodies. For some, cancer was a ‘surprise attack’. This left an enduring sense of disbelief or bodily betrayal for some participants, and was even experienced as ‘the hardest’ thing about having cancer, as Robert and Victoria explained regarding their respective diagnoses of lung and colorectal cancer: ROBERT:

Probably the hardest thing I first had coming to difficulty with it or coming to grips with it was I had no symptoms. I have never had a cough. You should be coughing up blood, you should be doing this, you should be doing that. Never had it. No pain, nothing. I have just got this tumour on one side that spread to the other side. VICTORIA: I went to my GP [general practitioner] for something completely unrelated and he asked me was there any other problems, and I said some foods were upsetting me, and he was very good. He just picked up the phone and he said, ‘Where do you want to go?’ and I said, ‘What for?’ and he said, ‘You need a colonoscopy.’ I went to him on

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the Friday, I went for my colonoscopy on the Wednesday, they were unable to do it because the cancer was so far advanced … I think I was just very numb. I think you just black things out. Both Robert and Victoria describe the dissonance of discovering cancer within their bodies that they did not sense in an embodied way, and how this was challenging or shocking or made them feel ‘numb’. Other participants more directly described the affective expectations that followed having incidentally discovered cancer in the absence of ‘typical’ symptomatology. For Lynette, who describes the incidental discovery of her lung cancer in her sixties, this was configured as an occasion for gratitude: LYNETTE:

It started in January of this year when I went and saw my orthopaedic specialist, who was going to do a knee replacement. The anaesthetist had asked that I get my GP to do a chest X-ray. So I went and had a chest Xray in preparation for having my knee replacement. INT.: Did they suspect something? LYNETTE: No … [It] was just one of the requirements that the anaesthetist wanted. So I had the chest X-ray, and lo and behold, there was a nasty little surprise. My doctor organised for me to see a specialist at the Prince Charles and I went up there and they did a biopsy, and sure enough I got the diagnosis that I actually had … lung cancer … So that was a bit of a shock, because I think I reached over and I said to that doctor, ‘Bloody hell. How am I ever going to get these knees fixed now?’ He leant over and he says, ‘You’ve got to thank your knees’ [laughter]. While Lynette saw humour in the exchange, her experience also makes obvious the disjuncture between her experience of shock at an unexpected diagnosis that her body did not, in and of itself, ‘know’ and the expectation of gratitude as the normative affective response. This expectation of gratitude, captured in such phrases as ‘lucky they caught it early/at all’ and ‘lucky to be alive’, is a pervasive feature of the contemporary cancer milieu and its associated normative expectations, which we discuss further in Chapter 3. Another instance around which participants alluded to the idea of knowing bodies was in relation to whether or not treatment was ‘working’. Numerous participants recounted their endeavours to ‘read’ bodily signals as divinations of their treatment’s efficacy. This is illustrated nicely by Des, a man in his seventies, who reflected on his experience of observing various low-grade cancers on his skin while undergoing treatment for lung cancer: One of the good things this time, didn’t happen last time, but all my sun cancers have swollen up, which I think is a good thing. It didn’t happen last time … So that’s the sun cancers being knocked around, and my doctor, he said it’s a good thing too, the oncologist. So yes, you do look for signs, I

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suppose. But, as they keep saying, it’s going to be down the track before we know if it’s worked or not. But as Des went on to explain, despite his inkling that the treatment was ‘working’, his prognosis shifted quite dramatically across his treatment ‘journey’. He found this really disorienting, as the outlook changed even though he ‘felt’ the same throughout: DES:

INT.: DES:

INT.: DES:

INT.: DES:

INT.:

DES:

When I first had the lung cut and then I was lining up for the chemo, one very good lady oncologist, she said, ‘You don’t have lung cancer. It’s a mopping up exercise.’ What does that mean? Well, it means there were a few cancer cells running around and they were going to get rid of them. But it went from, and this is what threw us a few times, it went from a ‘mopping up exercise’ to suddenly you’re on terminal watch. Right. And what was that like? How did you make sense of that? When you go in to sit down and talk to these people and then you walk out and say, ‘Oh shit. What’s happened?’ pardon my French, but that’s exactly what you’re thinking: ‘How did we get this far?’ We’re really interested in those ‘oh shit’ moments. What kind of things did you want to know when you were hearing about what was going on? Well, I suppose you want to know your prognosis … Of course, you want to know what treatments there [are]. I wanted to know how bad it was, where they were, what size they were. We did a lot of reading. We did a lot of research. The more information you have, the better you can deal with things. Look, if somebody had told me, ‘Okay, you’ve got two years to go and it will take you out’, I’d say, ‘Fine. I know what’s happening. I can plan for that.’ It’s this up-down, all over the place. You just don’t know. You don’t have enough information. It’s the quality/quantity of information that you really need. That’s something we hear a bit about. The uncertainty is the hardest part to deal with. Can you tell me a bit about what that uncertainty has been like to live with? The biggest thing I could say about all of it is it’s surreal because there is no pain, there is no symptoms, nothing. If it wasn’t for this chemo I would look normal. It’s not affecting me at all. I don’t know that I’ve got something in there. There’s no external sign, and that’s the hardest thing to come to grips with is saying, ‘Look, I’m all right.’ But, as somebody said to me, ‘If you let it go and you don’t do this, you’re dead in six months or something.’ That’s the most interesting part of it all, is the unrealness of it, if that makes sense.

For Des, the collision of his body’s not-knowing – that is, his initial lack of physical symptoms prior to his lung cancer diagnosis – with the (quite taxing)

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experience of side effects from treatment made the embodied experience of cancer surreal. At the same time, across his various avenues of treatment from surgery to chemotherapy and radiation, his prognostic outlook remained shifting, making the quality/quantity-of-life calculations that he desired elusive. Therefore, his ability to plan, to live with and beyond cancer, proved impossible. His struggle with these dimensions of living-with disease – weathering uncertainty, desiring to plan and questioning the mortal calculus of quality versus quantity of life – was common to almost all our participants, across a wide range of cancer types and stages of disease.

Living Beyond Pathology Des posited the inability to plan as one of the challenges of living-with cancer, illustrating some of the temporal dimensions of affliction that share various continuities with daily living (see Andrews, 2014; Singer, 2004). Many of our participants drew similar contrasts between the challenges of living-with disease and the challenges of living in general. More than a point of comparison, though, these participants’ reflections illustrate the iterative and comparative search for meaning amid the uncertainties brought by disease (and pervasive in life, more broadly). As a result, how our participants navigated and reflected on their lives beyond pathology foregrounds a range of questions around how one should live, for how long, and to what end. One participant, Paul, was in his fifties when he was diagnosed with squamous cell carcinoma. He characterised the mortal reckoning that accompanied his diagnosis in the following way: So I always envisage that I would be 100 or I’d live to a fair age … and then when I got that diagnosis I thought, ‘Geez, I might be lucky to be around in two years’, and I worried for my kids … So that was my first concern. Then I thought, ‘If I get treatment maybe I might get another five or ten years’, and I talked to the doctor and he had a look the first day he saw me and he said, ‘Touch wood, I think we’re going to cure you. There’s an 85 per cent to 90 per cent chance of a cure for this particular kind [of cancer]. There’s no guarantees, but that’s a pretty good prognosis.’ But there’s always that thing at the back of your mind where you think there may be a reoccurrence or maybe I won’t get cured this time. When it first happened, when we first got the diagnosis, one of the things my wife said was, ‘Maybe we need to sell the farm and just move into town somewhere where things are a bit easier’, and I said, ‘No, I’m not going to give up living just because I’ve got cancer. If it comes to pass that I’m not going to get better, well and good, but I’m not going to change my life just because I’ve had this diagnosis.’ Paul’s characterisation of cancer as something that is not a reason to ‘give up living’ illustrates the processual nature of cancer as becoming – as an iterative unfolding of living in relation to both what has come before and what may come next. For

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Paul, preserving continuity was important, though subject to future revision if circumstances (and future prognosis) might require it. A number of participants’ accounts emphasised this continuity, if not in relation to living arrangements per se then in terms of their general outlook. For example, David outlined his response to being diagnosed with brain cancer in his fifties, drawing parallels between his outlook then and his outlook before: I say to [my partner] all the time, ‘Right, I’ve been diagnosed with something that, basically, if you look at it on the internet, it’s terminal, but I hope it’s five or six years under current treatment.’ But the thing is, it’s something that’s going to happen to all of us at some point. We are all going to die. Basically, none of us really know when, and I don’t know when either. I’ve got a disease, but I still can’t say that I’m going to die tomorrow, I’m going to die in five years’ time, I’m going to die in three years’ time. I don’t look at it as much as … It hasn’t changed the way I look. I didn’t know when I was going to die before I was diagnosed, so I never thought about it. It’s there and I think about it, but I don’t think, ‘Oh God, will I be here at Christmas this year or will I be here to celebrate my [next] birthday or will I be here for …?’ That’s not [at the] forefront [of] my thoughts, if you understand what I’m saying. While David managed to keep questions of his mortality out of the forefront of his thoughts, for other participants, their cancer diagnoses catalysed various forms of action. For these participants, a sense of continuity in some things was accompanied by a sense of discontinuity in others. Marie, who was in her sixties and living with advanced neuroendocrine cancer, pointed to instances of both continuity and discontinuity in explaining how she made sense of living-with an incurable form of cancer: MARIE:

We’re all on borrowed time anyway, in a sense, aren’t we? So I suppose, it’s just perspective and how you look at it and try and make the most. I think it is a bit of a wake-up call to get your life in order and do what you want to do and get rid of all the rubbish that you’ve collected, scale things down and focus on what’s important. I think that’s probably been part of it. INT.: What is important to you now? MARIE: I probably only want to spend time with people I like. I don’t really want to put myself out doing things I don’t really want to do. I’ve always been a very big fan of my children. I do love to spend time with them. Even though they’ve grown up, it’s always been a big part of my life. But I suppose, to be truthful, I have become more selfish. So I’m now saying, ‘No, I don’t want to do that’, or ‘That doesn’t please me’, or ‘I’m not going there.’ Whereas I had a lot of difficulty doing that before. So in one sense, I’ve become much more focussed on what I want and what I would like to achieve while I can.

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Marie’s characterisation of using her time the way she wants as ‘selfish’ speaks to important normative dimensions of cancer survivorship, which have important gendered dimensions around who ‘owns’ their own time, their own futures. Ken, a participant in his fifties living with colorectal cancer, related the following: I would like to live until I’m eighty. Who wouldn’t? To me, I was born, I’ll die, and in between is mine. You can’t set the date that it’s going to happen. I can spend the next thirty years going, ‘Woe is me. When am I going to die? When am I going to die? What’s going to happen? What’s going to happen?’ or I can spend the next thirty years living life. That’s how I look at it … I really don’t look to say, ‘Am I going to have thirty years?’ I’ll spend the next thirty years wondering if I’m going to have thirty years. But Ken’s ‘ownership’ of his time between his birth and the inevitability of his death contrasts markedly with some participants’ approaches to navigating the terrain between diagnosis and eventual mortality. This relates to more than just ‘owning’ one’s own time, or even one’s own disease, including the notions of relationality, proximity and temporality that were discussed earlier. How participants – both people with cancer and their carers/family members – oriented themselves towards living beyond cancer in the now and into the future was always negotiated in relation to a range of others including spouses, partners, children, grandchildren, friends and colleagues, and entailed a wide range of (often competing) normative, affective and practical imperatives. Melissa, who was in her forties while caring for her husband who had been diagnosed with incurable brain cancer, described the different orientations towards knowing (and managing) the future: I suspect that he [my husband] would say he would have preferred not knowing. From a mum perspective and a wife perspective, I still think if I was put back in this situation, I would still ask [for the prognosis]. I don’t think he would, though […] I have thrown a positive spin – at least knowing the time frame or a potential time frame has given us an opportunity to do things that we would never have done. Wanting to know (the future) was not always well aligned across relational units such as partnerships or families, but it heavily mediated how the day-to-day of living-with disease was navigated across bodies and time. Camila, who helped care for her father in his seventies living with lung cancer, described the tensions and tactics that emerged across the different orientations towards knowing and navigating towards the future: He just doesn’t want to know anymore. They tell him, ‘Do you have any questions? Do you need any information?’ He says, ‘No, no, I’m good.’ […] We have [questions] and a lot of the time, because I know he doesn’t want

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to know, I will wait until the appointment with the doctor is done and then, while he’s receiving the chemo, I’ll go and talk to the nurses and ask them if they can possibly find out for me. Yet forms of ‘knowing’ were not always the panacea some participants hoped for, with much of the uncertainty of living-with disease not merely due to a lack of information per se but rather inherent to the situation. On top of the inherent, or ontological, uncertainty of prognosis, there was also the issue of not being able to ‘unlearn’ information once it was obtained, as described by Laura, whose mother was living with metastatic breast cancer: LAURA:

There are some bits, it’s like, ‘Okay, that’s the worst case and I now wish I didn’t know that’, so I blank that off a bit. INT.: It’s hard to unlearn things isn’t it? LAURA: It’s hard to unlearn, but you can remove the emotional connection. So I know that when I was looking at the different stages of the secondaries in the lung and relating it to what Mum’s got, it’s like, ‘Okay, I think she’s at that stage. I’m really not happy knowing that.’ Similarly, for James, who cared for Donna, who was in her fifties and living with lung cancer, there is a sense of striving for normalcy in a routine, and life, interrupted: You hope for a cure or at least to be stabilised to return to some level of health, healthy lifestyle, things like that. I suppose it’s a case of looking at it from two angles. One is, get your house in order, but then, I guess the way I’ve gone is just make sure you enjoy every day, because you never know what your fate could be. They might be sick, but I could walk out there and get hit by a truck or something can happen, and you see that. Laura’s and James’s accounts reveal that beneath the normative imperative to ‘prepare for the worst, but hope for the best’ lies a range of much more complicated ways that people living with cancer, and their relational others, variously attempt to live with and beyond pathology, preserving varying degrees of dis/ continuity with what was before, what comes next, and what is in the meantime.

Dying (but) Well The intersecting difficulties of embodying pathology, knowing/feeling disease and orienting towards others and the future were particularly pronounced for those living-with incurable or advanced disease and in relation to a terminal prognosis. These participants were forced to coexist with an unrelenting cancer in their body due to the impossibility of further treatment. In such cases, embodying cancer was experienced in a range of ways, but often described as uncanny. This was

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articulated very clearly by Kylie, who was in her thirties when diagnosed with a terminal inoperable brain tumour: So, it’s still a terminal prognosis, but I am on a course of [drug] now, which is every [few] weeks. They don’t really know if it’s working, but at the moment I’m clinically well, which means that I’m up and going, I’m walking around, I’m talking, which seems to indicate that it’s working okay. It’s very weird sometimes thinking that my nails still grow, my hair still grows, but I’ve got this horrible tumour in my head that’s killing me. So that’s a bit weird sometimes, thinking about that. I’ve got all these things that are still growing and are still healthy, but then I’ve got this really unhealthy thing in my brain as well. It’s just a bit funny to think about. But I don’t try and think about it very often, actually. Kylie’s reflections illustrate the various tensions between the healthy/diseased body, embodied day-to-day experience and medical expertise in terms of clinical wellness and the prognosis of terminality (see Kelly-Hanku et al., 2018). During the interviews, we also heard frequent accounts of how the daily lived reality of ‘feeling well’ presented an ongoing source of questioning and uncertainty. Such accounts were present throughout our participants’ narratives, but were particularly poignant for those with advanced but asymptomatic cancer. This was articulated through various tensions between cultural expectations around dying, receiving care and interacting with both family and medical professionals. Natasha shared her story of living with advanced brain cancer in her fifties, recounting the contradictions and conflicts she experienced as a result of being terminal but feeling well: I’m not on any medication at all now, which is great. I don’t even take a [paracetamol]. That’s what I mean, it’s a bit conflicting, really, because here I am classed as terminal yet I’m probably fitter and healthier than most people walking around [laughter]. I just think other people feel uncomfortable with it. They don’t know what to say, they don’t know what to do, I suppose. My mother, particularly … and I can feel for her. I can see how she must be so upset, but she wants to pat me all the time. ‘I’m not sick. I’m fine. I had a tumour.’ It’s almost treating me like I’m sick. I noticed that at the beginning, too. After I had the operation, I just felt fantastic. I was just euphoric, really, because I was alive, for God’s sake. A few people in my family mistook that as me being manic. Explaining that to some people, they don’t get it, so they thought I was going a bit barmy. I think a lot of people found that hard to deal [with] … My mother would have preferred it if I’d come home and just lay on the bed, being sick. Because I’m not sick, they don’t quite know what to do with me.

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The ‘conflict’ that Natasha describes between her incurable diagnosis and treatment as ‘sick’ by family and friends and feeling fit and healthy in herself was not only experienced at the register of contradictory emotions, but was also articulated in relationship to loved ones and various cultural expectations surrounding cancer, terminal illness and the dying process. Natasha’s embodied wellness and resistance to normative prescriptions around being terminally ill – namely that if one is dying, one should be in decline, or feel unwell, consistent with Parsons’s (1951) ‘sick role’ – illustrate how deviating from normative expectations around survivorship meant that her family and friends ‘did not know what to do with' her and ‘thought [she] was going a bit barmy’ (again, reminding us of the potency of proximity for all actors). But importantly, it illustrates how incompletely cancer survivorship as conventionally configured captures the experience of many of our participants, failing to capture the contradiction that often infuses the affective atmosphere of terminal disease. Although an incurable diagnosis may provide one form of certainty (that one will not be cured), incurability coexists with other forms of uncertainty: for example, in terms of how much time one might have left. Thus scientific/medical expertise circulates within the temporal/affective landscape of incurability (Lian & Robson, 2017). For example, one participant, Peter, aged in his forties, explained how the prognostic uncertainty of his colorectal cancer resulted in frustration and feelings of ‘being stuck’; it foreclosed his ability to plan for his midrange future or carve out a ‘trajectory’: I did push and say, ‘What sort of time frame am I looking at? What sort of expectancy?’ Originally it was thirty-three months and then, when they found out what kind of tumour it was, that dropped to about two years to two-and-a-half years … always with the proviso that they didn’t really have much of a clue. That it was all dependent on how the liver processed the drugs, how long they worked for, whether in that two years or whatever any sort of trial experimental things turned up, which there aren’t at the moment. It’s a little bit unreal to me because I’m not feeling sick and I’ve never felt sick. I’ve never felt like there’s anything particularly wrong with me. In fact, once I had got all flushed out for the colonoscopy and started eating better, I still pretty much feel better than I have in years. It’s quite ridiculous, frankly [laughter]. The frustrating thing about it is that they don’t really seem to know at the moment … I just kind of wish I had a bit better of an idea of when it was going to turn nasty, instead of just waiting. Peter’s account illustrates the uncanny feeling of embodied not-knowing, especially alongside considerable clinical uncertainty – namely, clinicians who ‘didn’t have much of a clue’. Reflecting on how he managed the waiting and uncertainty around his prognostic time frame, Peter continued: I don’t know that I’m really managing it at all, frankly, at the moment. I’m just going along as normal, what I feel [is] normal. [The doctors] did say,

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‘When we get an idea that things are turning bad, we usually say whatever you want to do, just do it.’ The rest of it is just, I don’t know, waiting, really … I don’t know. It doesn’t really seem as bad as I thought it would be … I don’t really know what I want to do in that time. I don’t know. At the moment, I just seem a bit stuck. Peter’s comments illustrate the general complexity of survivorship as practice, including the role of scientific/medical expertise within the affective economy of advanced cancer (care) (Novas & Rose, 2000). While acknowledging both the somatic basis of malignancy and the centrality of technologies in addressing biopathologies, we also wish to highlight how the ‘terminal cancer patient’ derives its ontological being through alignment with or estrangement from the expert gaze of the medical profession (Kenny, Broom, Kirby, Wyld, & Lwin, 2017). Yet this doubles back upon people’s experiences of illness when the cultural assumptions about medical certainty are not met. Medical diagnoses, treatment options and prognostic forecasts all encompass inevitable uncertainty, yet we often expect otherwise. Thus, both Peter’s and Natasha’s stories reveal the emergence of incoherence at the juncture of clinical certainty regarding incurability, considerable uncertainty regarding prognostic forecasts, and the lived experience of treatment and terminality. In articulating his frustration at ‘just waiting’ and his wish for some kind of alternative, Peter illustrates the dimension of anticipating the future that Adams et al. (2009, p. 254) have termed ‘injunction’, in which individuals are obliged to inhabit an ‘ethicized state of being’, to ‘stay informed’ about possible futures and to adopt ‘alertness and vigilance as normative affective states’. While Peter expresses the desire to enact this injunctive imperative, which aligns with the dominant survivorship discourse of positive activity more generally, he is ‘stuck’ instead within ‘not feeling sick’ but anticipating death in his early forties. We explore these dynamics of waiting (Broom, Kenny, & Kirby, 2018) and the ethicised imperatives towards positivity and action (see Adam & Groves, 2007) in the chapters that follow.

Discussion In this chapter we have sought to lay out some of the key conceptual and empirical complexities of living-with cancer, with a focus on the ways in which the normative is done, redone or potentially undone in the lifeworlds of those in close proximity to it. This framing makes visible a series of considerations often sidelined in the routine production of cancer survivorship. Practice mobilises different forms of connectivity and proximity, and necessitates multiple ontologies (in this case, of disease). A practice-based frame centres the body as part of a complex system of affective relationships between patients, family members, carers, doctors and institutional regimes of expertise and care. When we talk of survivorship-aspractice, and building off the accounts of our participants, we can articulate the

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disjunctions, contradictions and tensions which are prominent in the lifeworld of cancer and those who are living with it. When cancer is unanchored from the (clinical) point of departure – the official diagnosis – we can start to see how it becomes known (and unknown), or intuited, in ways that unravel conventional temporalities of disease. Proximity then becomes an important anchoring concept in terms of both relationality and temporality in the context of practice (Guest & Corrigan, 2018; Mattingly, 2019). As time goes by, proximity (to others, techniques, power, authority, solutions, terminality and death) mediates, traps, coerces, liberates, nullifies and obliterates. As complex agentic entities, we don’t play along; feeling otherwise, bodies resist, push away and exercise agency within their sociomaterial entanglements. Cancer thus becomes much more than a lived experience; rather, it is an emergent form, produced through proximity and bound to multiple overlapping ontologies.

References Adam, B. & Groves, C. (2007). Future matters: Action, knowledge, ethics. Leiden: Brill. Adams, V. Murphy, M. & Clarke, A. (2009). Anticipation: Technoscience. life, affect, temporality. Subjectivity, 28(1), 246–265. 10.1057/sub.2009.18. Ahmed, S. & Stacey, J. (Eds.). (2001). Thinking through the skin. London: Routledge. Althubaiti, S., Karwath, A. Dallol, A., Noor, A., Alkhayyat, S. S., Alwassia, R. … Hoehndorf, R. (2019). Ontology-based prediction of cancer driver genes. Scientific Reports, 9(1), 1–9. doi:10.1038/s41598-019-53454-1. Andrews, M. (2014). Narrative imagination and everyday life. London: Oxford University Press. Barcan, R. (2020). Complementary and alternative medicine: Bodies, therapies, senses. New York: Routledge. Beck, U. & Beck-Gernsheim, E. (2002). Individualization: Institutionalized individualism and its social and political consequences. London: SAGE. Bell, K. (2010). Cancer survivorship, mor(t)ality, and lifestyle discourses on cancer prevention. Sociology of Health & Illness, 32(3), 349–364. doi:10.1111/j.1467-9566.2009. 01198.x. Berry, L., Davis, S., Flynn, A., Landercasper, G. & Deming, K. (2019). Is it time to reconsider the term ‘cancer survivor’? Journal of Psychosocial Oncology, 37(4), 413–426. doi:1080/07347332.2018.1522411. Blackman, L. (2020). The body: The key concepts. Oxford & New York: Berg. Bourdieu, P. (1977). Outline of a theory of practice (Vol. 16). London: Cambridge University Press. Brockmeier, J. (2009). Reaching for meaning: Human agency and the narrative imagination. Theory & Psychology, 19(2), 213–233. doi:10.1177/0959354309103540. Broom, A., Kenny, K. & Kirby, E. (2018). On waiting, hauntings and surviving: Chronicling life with cancer through solicited diaries. The Sociological Review, 66(3), 682–699. doi:10.1177/0038026117719216. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182. doi:10.1111/1467-9566.ep11339939. Charmaz, K. (1990). ‘Discovering’ chronic illness: Using grounded theory. Social Science and Medicine, 30(11), 1161–1172. doi:10.1016/0277-9536(90)90256-r.

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Munro, R. & Belova, O. (2008). The body in time: Knowing bodies and the ‘interruption’ of narrative. The Sociological Review, 56(2), 87–99. doi:10.1111/j.1467-954X.2009. 00817.x. Nettleton, S. (2010). The sociology of the body. In W. Cockerham (Ed.), The new Blackwell companion to medical sociology (pp. 47–68). Malden: Wiley-Blackwell. Nortvedt, P. & Nordhaug, M. (2008). The principle and problem of proximity in ethics. Journal of Medical Ethics, 34(3), 156–161. doi:10.1136/jme.2006.020230. Novas, C. & Rose, N. (2000). Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), 485–513. doi:10.1080/03085140050174750. Parsons, T. (1951). The social system. Glencoe: The Free Press. Peggs, K. (2018). Multi-species sociology of the body. Journal of Sociology, 54(4), 504–519. doi:10.1177/1440783318802984. Scarry, E. (1987). The body in pain: The making and unmaking of the world. New York: Oxford University Press. Schillmeier, M. (2008). Actor-networks of dementia. The Sociological Review, 56(2), 141–158. doi:10.1111/j.1467-954X.2009.00820.x. Shilling, C. (2007). Sociology and the body: Classical traditions and new agendas. The Sociological Review, 55(1), 1–18. doi:10.1111/j.1467-954X.2007.00689.x. Singer, J. (2004). Narrative identity and meaning making across the adult lifespan: An introduction. Journal of Personality, 72(3), 437–460. doi:10.1111/j.0022-3506.2004.00268.x. Sointu, E. (2016). Discourse, affect and affliction. The Sociological Review, 64, 312–328. doi:10.1111/1467-954X.12334. Steinberg, D. (2015). The bad patient: Estranged subjects of the cancer culture. Body and Society, 21(3), 115–143. doi:10.1177/1357034×15586240. Tavory, I. & Eliasoph, N. (2013). Coordinating futures: Toward a theory of anticipation. American Journal of Sociology, 118(4), 908–942. doi:10.1086/668646. Vannini, P. (2016). Body/embodiment: Symbolic interaction and the sociology of the body. New York: Routledge. Wilson, E. (2004). Psychosomatic: Feminism and the neurological body. Durham: Duke University Press.

2 WAITING, HAUNTINGS AND SURVIVING

The survivorship scene has traditionally been staged against a normative trajectory, from diagnosis to treatment and then, ideally, cure, following a path that moves firmly and directly away from disease. This has produced a paradox: a disease-centred model of survivorship that, wittingly or not, de-emphasises living-with disease, resulting in the marginalisation of a growing cohort of people living-with cancer. These are the ‘incurable survivors’, who largely defy neat oncological categorisation. The rise of new cancer therapeutics, including precision therapies, has only increased this cohort of incurable survivors, who are living-with, rather than beyond, disease (Chow et al., 2018). This has, in our view, increased the need for critical analysis of ordinary experiences of living-with disease. This involves asking: what is the meaning of cancer within people’s lifeworlds? What does it do? What does it take away? What complexities does it bring to the inevitabilities of ageing, decline and, eventually, our own mortality? And importantly, how does the experience of living-with cancer do each of these things as a form of relational practice, over time? Social science scholarship typically mobilises a conventional approaches to methodology based primarily on the semistructured interview (see Bauman et al., 2002; Olson, 2015). While this approach remains crucial, and is one way we explored people’s experiences of living-with cancer, we also sought to move beyond it. Interviews yield particular types of insights, and thus lead to particular avenues of analysis (Tavory, 2020). But we wanted to broaden the epistemological possibilities of cancer research and challenge traditional methodologies, and ourselves, by asking: what are we actually accessing via our social science methodologies, and what are the consequences for what we can say about cancer? We thus deployed a range of innovative methods to discover the experience of cancer in ways that might challenge our own assumptions and normative frames. As outlined in the Introduction, we used both solicited diaries and a process of photo elicitation and collection to broaden our analytic frame. The solicited-diary

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methodology, which was developed by Alex Broom in a previous study in the UK (see Broom & Tovey, 2008; see also Elliott, 1997; Jacelon & Imperio, 2005; Jones, 2000), enables us to access the temporally extended practice of cancer beyond the dialogical snapshot that emerges over the duration of any given interview. In this way, it removes, to some extent, the researcher’s presence, and allows things to be documented beyond the conversational window of the interview, including whatever moments for reflection participants’ lives afford (late nights, early mornings and so forth). For the diaries, we focused in particular on those living in the inbetween, on the often-overlooked lives of incurable survivors. What would their everyday practices look like? What would emerge from their day-to-day tussles with affliction, and what would be of greater or lesser importance to them? Who or what would be present in their daily routines, activities and thoughts, and what would this teach us about cancer temporalities and their entanglements with disease? Participant diaries and accounts of living-with cancer elaborate a phenomenology of waiting (Hage, 2009; Schweizer, 2008) in showing how clinical prognostications affectively ‘haunt’ the present (Gordon, 2008, 2011). This reveals critical insight into the practice of cancer survivorship (Broom, Kenny, & Kirby, 2018) among the oftconcealed group of ‘incurable survivors’, who exist between the hopes of the curative milieu and the mortal inevitability of the end of life. As oncology gains momentum amid widely publicised hopeful transformations and new curative possibilities of precision medicine (Morgan, Occa, Peng, & McFarlane, 2020), there is, we argue, a crucial role for social scientists to articulate the importance of everyday life with cancer (see Bell, 2010) and, more broadly, in relation to affliction, decline and unavoidable human mortality. While extant literature tends to focus on the intersection of particular cancers with individual biographies (e.g., Chapple & Ziebland, 2002 on prostate cancer; Chapple, Ziebland, & McPherson, 2004 on lung cancer) or its social reception (e.g., Seale, 2001, 2002), we turn instead to the conceptual literature centred on waiting and hauntings, which we then draw upon to examine the diaries of the participants themselves.

Waiting Within the context of life-prolonging treatment and survivorship, there has been relatively little emphasis on the social and affective dimensions of waiting. The promises and actualities of cancer care – the swiftly changing options for those diagnosed with tumours which, in their advanced stages were previously almost immediately fatal (for example, advanced lung cancer, melanoma and ovarian cancer) – mean that waiting in itself has become an increasingly important component of the lived experience of cancer, at the same time as it has become devalued within the broader cultural milieu (Schweizer, 2008). Importantly, waiting does not happen in a somatic or contextual vacuum, but rather amid a cultural, political and economic climate and broader social relation to time (Adam, 1990; Nowotny, 1994; Urry, 2012). According to some scholarship in the area, the ‘art of waiting’ has been lost in the public consciousness (see Schweizer, 2008). That is, waiting is no longer

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considered in positive terms; it is not valued as form of capital with the associated incentives to do it well, nor is it prominent in cultural narratives about ‘character’ (Frank, 2003) with the implication that ‘waiting well’ is, in itself, a virtue (see more on this in Chapter 3). In fact, waiting is often positioned as antithetical to the productive self. As Harold Schweizer notes in his book On Waiting: ‘The person who waits is out of sync with time, outside of the moral and economic community of those whose time is productive and synchronized or whose time need not – in the habit of velocity – be experienced at all’ (2008, p. 8). Waiting, then, in contemporary terms, is enforced passivity, expelling a person from the community of ‘productive’ citizens, where the passage of time, uninterrupted, recedes into background of the taken-for-granted. The impact of having to wait – for news, for new treatments to emerge, for decisions to be made, for recoveries to happen – has been an underexplored aspect of the phenomenology of illness and affliction (though see Del Vecchio-Good, Manuakata, Kobayashi, Mattingly, & Good, 1994). For many, including our participants, the verdict of cancer entails a sentence of waiting. But what is waiting in such circumstances, and what can we glean from the broader cultural resistance to waiting in advancing our understanding of cancer in/as practice? Of consideration here in particular are the lived experiences of waiting, forms of clinical knowing and cultural norms around illness (Finerman & Bennett, 1995), which are articulated temporally in both the day-to-day undulations and chronicity of disseminated cancer (Stacey, 1997; Tritter & Calnan, 2002). In some respects, the affective discontents of waiting are quite simple. As Schweizer argues: Although time is supposed to function like a door or a hall through which we pass unawares, in waiting, the door jams and the hall is endless. The hour does not pass. The line does not move. Time must suddenly be endured rather than traversed, felt rather than thought. In waiting, time is slow and thick. (2008, p. 2) The problematic of waiting, among other discontents, is that it is bound up in questions around its causes, consequences and alternatives: what is being waited for, for whom, to what end and instead of what else? It is different to uncertainty, which entails a more epistemological orientation, in that uncertainty is orientated towards knowledge – that which is precarious, unknown or known – whereas waiting is an embodied practice, anchored in everyday affect, below conscious thought. Waiting is also a social practice, bound up with questions around expectation, expertise and authority (Adam, 1990). It may also be assumed that waiting is inevitable in cancer. In waiting, very often, there is an emphasis on, and a struggle around, biophysical process: the very act of waiting can treat disease as incremental and distinguishable. Waiting to see what ‘cancer’ does renders disease as separate, distinguishable from the self. Waiting, then, can become a site of contestation over the boundaries between persons, disease and expertise. In the internal and intersubjective tussle over

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waiting, various questions are raised in the everyday telling of cancer which challenge the very logics of practice. Waiting for what? For disease to progress; to feel better or to not feel worse; for a dreaded reality to emerge or for spontaneous remission instead; to be the 1 per cent who achieve remission; to survive or to not survive; or to stop waiting and start living? Hence, the phenomenology of waiting is not something that is done on its own; the act of waiting is subsumed within logics about the course of disease, pathology, intentionality and inevitability. Waiting is disciplined, operating within structures of power and authority and capturing forms of agency and resistance (see Foucault, 1977). Embedded in, and articulated by, waiting are relational practices of surveillance and domination within the medical milieu and its claims to knowledge, truth and the course of things/disease. In this context, waiting is not so much a case of anticipating what will become, what will emerge, as the future unfolds but is implicated in a politics of knowing and calls into question the mechanisms through which authoritative knowledge comes to be seen as true and accurate. Waiting is thus a personal and interpersonal struggle within the discursive atmosphere of expertise and authority, truth and fallacy, sickness and wellness, hope and hopelessness, being and becoming.

Hauntings Waiting as a social practice operates at the nexus of the clinical and the embodied, affective or intuitive; it thus illustrates how structures of knowledge inflect the everyday of living with affliction. In thinking about waiting, it is also useful to consider what informs it, what occupies it or what possesses it. In this sense, Gordon’s (2008, 2011) work on hauntings helps illuminate the affective dynamics produced by, and in, disease in relation to clinical authority. She describes her approach to hauntings thus: I used the term haunting to describe those singular and yet repetitive instances when home becomes unfamiliar, when your bearings on the world lose direction, when the over-and-done-with comes alive, when what’s been in your blind spot comes into view. Haunting raises specters, and it alters the experience of being in linear time, alters the way we normally separate and sequence the past, the present and the future. These specters or ghosts appear when the trouble they represent and symptomize is no longer being contained or repressed or blocked from view. (Gordon, 2008, p. xvi) Elsewhere, she elaborates: Haunting [is] precisely the domain of turmoil and trouble, that moment (of however long duration) when things are not in their assigned places, when the cracks and the rigging are exposed … when easily living one day and

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then the next becomes impossible, when the present seamlessly becoming the future gets entirely jammed up … Haunting … refers to this socio-politicalpsychological state when something else, or something different from before, feels like it must be done, and prompts a something-to-be-done. (Gordon, 2011, pp. 2–3) As we illustrate later, Gordon’s elaboration of hauntings is eerily pertinent to the experience of incurability. The spectre of disease, as it were, makes its presence known; yet knowledge of its very existence is deeply embedded in structures of biomedical expertise and authority (Doron & Broom, 2019). That is, cancer as a lived experience often jars with the clinical readings and representations of cancer as a discrete biophysical process. This can be particularly acute in advanced cancer, where incurable diagnoses and terminal prognostications of oncologists sit in tension with the hopeful anticipations of their patients (see Banerjee, 2019; Broom, Kirby, Good, Wootton, & Adams, 2014). The notion of hauntings draws attention to the modes of knowing, which in oncology include a range of techniques of visualisation and surveillance, especially scans. While we do not dispute the utility of scans for knowing pathology that is interior to the body, we do wish to highlight their affective consequences in their role as spectres (see Van Dijck, 2011). As the building blocks of oncological prediction, diagnosis and prognosis, and as technologies of interpretation, scans are omnipresent in the lived experience of cancer. As we explore through participantproduced diary entries, this means waiting with surveillance and managing the juxtaposition of embodied experience and the results of imaging (see also Kenny, Broom, Kirby, Wyld, & Lwin, 2017, on terminal anticipation). This form of biomedical haunting foregrounds disease as known and articulated by oncologists, while the emotional life of the person recedes into the background. As a result, the clinical hauntings provoked by advanced cancer can render a life not worth living unrecognisable and can make securing more time necessarily worthwhile. Day-to-day experiences illustrate practices of resistance and transcendence of such ‘spectres’, with the lived experience of cancer importantly involving other forms of knowing and raising other possibilities. We articulate this dynamic of haunting and anticipation, or waiting, through a temporal methodology which reveals the tussles between normative influences over time and between moments in illness, wellness and care.

Terminal Entanglements We asked twenty-three of our research participants to complete a diary over a one-month period, during which they answered a series of repeated daily questions. In selecting people to take part, our priority was to explore the insights of those living in the in-between of clinical categorisations; that is, neither clearly curative nor palliative. Fifteen diaries were returned – eight participants either discontinued, did not send the diary back or died during the diary phase – with

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some diversity in terms of sociodemographics (aged in their forties to midseventies; eight men, seven women). We wanted to use the diary format to explore some of the key questions that underpinned our research: how does cancer shape our participants’ everyday lives? How is uncertainty (prognostic, ontological) experienced by the participants, both in the moment and over time? What are the impacts of disease, treatment and side effects, and how do participants make sense of these in their lives and social relationships? How are clinical interactions, knowledge and expertise experienced, and what are the implications therein? Across the returned diaries, it was clear that living with advanced and/or potentially incurable cancer fundamentally challenged participants in their everyday lives, offering a mix of contradictory and constantly changing emotions and experiences. A prominent feature of these diaries was the practice of forgetting: of disentangling the self from the spectre of cancer. This was situated between being constantly ‘drawn back in’ and also trying to ‘take one’s mind off’ cancer, as Audrey, who was in her sixties and living with a rare form of head/neck cancer, reflects on in the following. This illustrates some of the pervasive affective tensions encountered – including that between dread and hope – as Audrey imagines and feels her disease, in her body, day-to-day. The anxiety is palpable, as are her ongoing efforts to transcend it: AUDREY

Day 1: Yoga and meditation. Keeping positive … yoga & meditation, which is great, takes your mind off everything. Day 3: Have a cold & a few aches & pains. Every little thing you think about is as if the cancer is going somewhere else [in your body]. Day 5: Thinking about upcoming scan. Hate them. [Concerned] that it will be bad. Day 6: Tired – when I woke up [I was] thinking a lot about cancer. Day 7: It’s [sic] always seems to be in the background you can be busy doing lots of things [but] when you stop it’s there. Thinking about my upcoming scan on my lung nodules. Day 8: Its [sic] there in the background your mind keeps taking you there. Did yoga & meditation today, feels good … Fear of cancer returning. Day 11: Anxious today. Had chest CT scan checking on growth of lung metastases … Hate these days as we seem to live day-to-day & scan-to-scan … You try to put it out of your mind but [you] seem to be drawn back in. The waiting–transcending dialectic dominates Audrey’s narrative, illustrating the tension between waiting for future clinical prognostic updates and also trying to live in the meantime – to do more than just wait. Here we see a latent normativity around the passivity of waiting and the attempt instead to keep pace with the

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velocity of social existence by ‘keeping positive’ and ‘put[ting] it out of your mind’. The difficulty of ‘forgetting’ cancer and the omnipresence of clinical prognostications was articulated by Jack, who was living with advanced tonsil cancer and was in his fifties, and for whom a future PET (positron emission tomography) scan was ‘hanging over him’, not allowing him to ‘get away from’ his cancer: JACK

Day 26: Tomorrow will be a big day – my 3-month PET scan … tell me how I have progressed. Hoping I am in remission/recovery … Just concentrating on today! Day 27: Had a restless night worrying about my PET scan today … Hopefully I will have a shrinking or no-sign of my tonsil tumour or no other signs in my body of further cancer … The doctor was really good, she was frank about what they might uncover but at the same time hopeful of a good result. It put me at ease. A big day – perhaps one of the biggest in my life. Day 28: Had a bad night – awake a lot … I am freaking out a bit about the scan and I feel very anxious … Just concentrating on everyday things around the house, but feeling pretty out of sorts, and a bit panicky inside – anxious – and trying to de-stress. Day 29: I know this week I will be anxious waiting for the scan results … Sometimes it’s good to get away from cancer. I have good solid thoughts about the future. Where we will be and what we want to do, which is good. Audrey, Jack and other participants articulate a complex mix of waiting and restlessness, but also resistance to being subsumed by the dread and unease produced by their illness’s prognosis. Waiting, or living ‘scan-to-scan’, was anxietyprovoking, with impending scans an ever-present reminder of the presence, and progression, of their disease. For some participants, like Ellen (and reiterating our analysis in Chapter 1), cancer was present, or felt, insofar as it was experienced through her treatment; she experienced no symptoms or pain, and her cancer had no visible or recognisable presence. For Ellen, who was in her seventies with neuroendocrine tumours, the spectre of cancer followed her home from the halls of the hospital. Her appointments thus functioned as a revisiting, which reminded her of her fate and her own mortality: ELLEN

Day 1: As I have no pain, cancer is not foremost in my mind. Day 3: Sometimes I wonder how long I’ll be around. Who knows … Day 5: Tired. Some nights I wake up at 2–3 am and can’t get back to sleep for no reason.

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Day 9: Always appointments. Etc. to remind you that you had an illness … I get angry that they didn’t pick it up two years ago. On the CT scan. It could’ve been a totally different outcome. Day 17: Out of sorts today, feel a bit down. I was told you can get like this the week after chemo. It’s the first time I have felt like this. Day 21: I wish I had more energy. Day 23: I’m not ready to turn up my toes & leave this planet, just yet. I have too many things to do & people to see. Especially to see my grandchildren grow up. Day 24: You think about doing something in the future & then you think, well I hope I’m still here & in good health. Day 25: Well I’m off to the hospital for another CT scan … Hopefully the tumors will have shrunk further … just wish I didn’t have to go through this. Day 30: Hospital cancelled my appointment for Thursday, they’ve deferred it til [a later date], beginning to think my social life is my hospital visits … Wondering now what is ahead of me. For Ellen, the experience of cancer was defined in part by the absence of any physical symptoms of cancer, which she equates primarily with pain or impairment. Instead, hospital appointments, imaging scans and the logistics of care dominate her experience of cancer. We note that it is not our purpose to dismiss the relevance and context of the clinical encounter (see Broom, Chittem, Bowden, Muppavaram, & Rajappa, 2017), nor the potency of oncological technologies or visualisations. Instead, we wish to highlight how expertise can be at once enabling and disabling, helpful yet disruptive, contributing to the complex mix of desires and emotions that circulate around cancer (Broom, Kenny, & Kirby, 2020). For participants, the interplay of waiting and bodily surveillance produced complicated affective tensions around the omnipresence of disease – of its constancy ‘in the background’, its presence as ‘always there’ and its interruption of simply being in everyday life. This participant-led critique was much more than merely the disenfranchisement of advanced cancer – disease ‘caught too late’, people with few ‘hopes for survival’. Rather, this was about surviving (or more accurately, living) amid the affective and biophysical circulation of disease, oncological encounters and care. In this sense, biomedical surveillance offered a ghostly presence, or a clinical haunting, of everyday reality, raising questions for participants around what the cancer was doing (for example, growing or shrinking) and requiring constant engagement of biomedical expertise as its progression was endlessly anticipated from appointment to appointment. One response to this set of tensions was to seek out normalcy – to live one’s life, in all its mundanity, alongside cancer.

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Normalcy and Normativity The participants’ diaries illustrated various attempts to find and reclaim a sense of normalcy within their daily lives. For Jack, the search for normalcy became, somewhat ironically, an extensive and thoroughgoing activity. In contrast to the pervasiveness of waiting and clinical prognostications, Jack sought to reclaim an explicit sense of living. This was articulated through a series of dialectics: ‘getting on with it/being in the here and now’, ‘remembering/forgetting’ and so on. ‘Successful’ living with advanced cancer was thus often contradictory, imbued with absence/presence, preoccupation/transcendence and dread/hope: JACK

Day 1: Positive emotions but still focussed on what I need to do to get better. I do think more about to live life with greater fulfilment. Day 3: Trying to spend a normal Saturday. Day 6: Still feeling incredibly tired today, I need to rest. Thought about the tiredness, but realised I am not going backwards anymore – I just have days where I don’t progress in my recovery. I am looking forward to getting my life back to normal the best I can. Cancer makes you realise that your every day, humdrum life is yours and valuable when something (cancer) tries to take it away! Day 10: You think about it [cancer] all the time, it can be good or bad … Day 13: Wanting to get on with life but realise I have to concentrate on the here and now. Day 15: Want to be back to my normal self and not think about cancer – but I know that is a while away yet. Patience! Day 16: In a good mood and thoughts of it’s not so bad and I am learning to live with cancer and deal with the uncertainty. Day 17: I definitely feel I am looking forward to living beyond cancer. Day 18: Looking forward to not thinking about it, but at the same time I don’t want to forget what has happened. A lovely warm spring day – life is precious. Day 21: Feeling a bit low as I start the scans to see how the cancer has progressed – or not. I don’t like living with cancer … Day 25: Learning to give life for everything and not make cancer the centre of the universe. Feeling resilient! The challenge of finding a way to live with cancer was accompanied for many participants by struggles around how to prevail over it, if not at the somatic level then at the register of the normative conduct of day-to-day life. As is the case with many forms of disease or affliction, living with cancer entailed struggles over

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virtue, honour and being a ‘successful’ subject of terminal or advanced disease (see Steinberg, 2015). What participants could ‘achieve’, whether and what kind of ‘goal’ might be useful and the nature of their responsibility to others around them all presented different sites of normative struggle. Dean was in his forties and living with advanced neuroendocrine cancer. He articulates these dilemmas around ‘fighting’ and the difficulties of goal-setting and living in his (usual) disciplined fashion: DEAN

Day 1: I am struggling with achieving my goals … With having cancer I have found myself saying to myself ‘F’ [fuck] it … but I hate it that I am losing the discipline … Frustrating! Day 7: There is great honor in fighting & by living through cancer but it is considered failing if you die. There is no honourable way of dying from cancer!! Day 9: I need to do more to fight cancer. I am not sure how I feel about this … Day 13: If I did everything that everyone thinks I should do to tackle cancer, that is all I would be able to do morning to night. It is difficult to get the balance right and satisfy all your loving supporters. While seeking normalcy and balance was a stated ambition across almost all of the diaries, the normative expectations surrounding those living with cancer imputed heavy responsibilities. In drawing attention to the lack of an honourable exit from a life with cancer, Dean highlights a sense of guilt and responsibility – a moral framing of the subject of illness, their responsibilities to those around them and the pressure to be a good subject despite the circumstances (also see Finerman & Bennett, 1995). Karl, who was living with brain cancer in his fifties, expressed a similar sentiment with the desire to ‘provide’ for his family despite the uncertain course of his disease: KARL

Day 9: I do think about my longevity – 1 year, 5 years, 10 … The cancer I have is aggressive … My main focus is to see the rest of my family through school – plus I also think about long-term happenings. Apart from cancer related issues, having cancer has made me think about passing on, life after death, etc. I will go into a big sleep. When will I wake up? Where will I be? When? I want to make sure I leave everything in a state that my family is looked after. Across many participants’ reflections, the desire to achieve the normative vision of cancer survivorship persisted despite high levels of uncertainty around their own disease trajectories. However, the uncertainty about the future that accompanies living with advanced or incurable cancer casts treatment – and its various side

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effects – in a new light as treatment becomes not a means to cure but an integral part of living with cancer in an ongoing sense.

‘It Is Like a Disease by Itself’: Side Effects, Suffering and the Valorisation of Longevity One of the consistent themes revealed in the diaries was the challenge of living with the consequences of therapeutic regimens, rather than symptoms of the disease itself. While the clinical focus was perceived to be staving off disease, this was often only part of the focus of participants. This is central to the survivorship experiences of people who are not candidates for curative treatment. The tolerability of illness was transposed into a matter of tolerating intervention (and its diminishing returns). The rise of targeted therapies and experimental immunotherapy drugs for a wide range of cancers has introduced a sometimes dramatically life-extending new set of possibilities, but also new forms of suffering through treatment (see Dragojlovic & Broom, 2017). These technological advances, which we focus on more in Chapters 6 and 7, are both practically and discursively inflecting the landscape of cancer (Mellman, Coukos, & Dranoff, 2011; Rosenberg, Yang, & Restifo, 2004). For several of the participants, the central struggle was assessing whether life was indeed worth living in the context of the side effects of their targeted interventions. Unexpected, perpetual and debilitating treatment side effects raised daily questions about the purpose of life and the dynamic of waiting, and suffering, especially when the option of simply waiting for treatment to end – for their cancer to be ‘cured’ – was foreclosed. Wendy, who was living with advanced lung cancer and was in her sixties, recounts: WENDY

Day 1: As soon as one is diagnosed with cancer … your life basically [r] evolves around the disease – scans, blood tests, MRIs, medical appointments, dealing with the different side effects … Day 3: Loss of appetite. [Targeted drug] seems to have change[d] my taste buds. I am unable to taste food any longer. Day 4: Getting fed up of having to deal with [many] side effects [of targeted drug], knowing it is ongoing. Day 5: If not for the side effects of the drug … I am not aware that I have lung cancer because there is no sign of it being there. Day 6: All the side effects … occur every day. Day 11: Now my life seems to be governed by Cancer … for example, trying to manage side effects of drug to make life more comfortable. The most frustrating thing is, there is no end to this (seemingly). Day 16: Today I have decided to discuss with the oncologist … stop taking [treatment drug] and bear the consequences of the disease – death. I find no

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purpose in suffering the side effects of the drug when I do not have a purpose to live. To doctors, my side effects appear to be very slight in comparison to other sufferers, but to have to endure the same things day in day out with no real outcomes is hard to take. Day 20: [Cancer] does not affect me at all. I sometimes forget that it is there. If not for the side effects of the drug, I am quite normal … Side effects cause continuous pain + discomfort with no end in sight … I do not want to live this type of life. Day 30: If anyone hasn’t walked in the shoes of the other, they can never understand … It is like a disease by itself! … I do not want to lead this sort of life any longer. It was clear from Wendy’s experience, and other diaries, that day-to-day coping with medication and side effects often represented the primary struggle of living with advanced cancer. That is, it often seemed almost surprising to participants that the cancer (or expectations around what cancer should feel like) was much less of an impediment to daily life than the regimens of treatment. Indeed, and as with scans, therapeutic regimens were a reminder of the presence of cancer, and the associated (and often ever-changing) affective entanglement with their cancer (fight it, accept it, avoid it, forget it and so on). But the pain and discomfort of everyday life under treatment also served as an ontological and relational battleground in which the stretching of subjects’ life spans was accompanied by longer and longer periods with disease (Feuerstein, 2007; Haylock, 2010). So to what extent could (or should) the body, the person, tolerate debilitating side effects for the sake of securing more (waiting) time? And for whom? The diaries reflected feelings of worth and responsibility in evolving self-assessments of quality of life under treatment, where the day-to-day undulations of side effects challenged participants’ evaluations of continuing life with cancer as worthwhile. The diaries revealed questions around the lived experience of diminishing returns and the extent to which a person was living with cancer or living with treatment. Against this shifting background of the war on cancer (Hanahan, 2013), waiting itself took on various affective alignments. For Des, who was also living with locally advanced lung cancer in his seventies, waiting is inflected at once with the hope that things will get better and with frustration at the enduring nature of treatment side effects: DES

Day 1: 14 months since given the news [of cancer] … last week of treatment … Very tired … The underlying hope is that the treatment is working and that it is a ‘curative’ approach. Day 8: Physically and emotionally, I feel down today … At this stage ‘living with cancer’ is overtaken by ‘living with the effects of cancer treatment’.

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Day 12: Physically: Very tired. The shortness of breath seems to be getting worse. The smallest physical activity appears to bring on the need to sit down and rest. Day 22: Still the same side effects of the treatment affecting me – tiredness, shortness of breath and sore throat. Day 29: Today is the appointment with [medical oncologist]. The morning was spent examining my side effects and preparing to ask him about them. After our discussions with [oncologist], we both felt much more positive. Our appointment … went well with all my current side effects being ‘normal’. Day 30: We are playing a waiting game … Aside from the treatment side effects, the only way I know I have cancer is what I am told as I do not have any symptoms … Probably the hardest aspect of living with cancer is accepting that I have cancer … While I have seen the results of CT and PET scans showing cancer tumors in my chest, I have had no symptoms or even discomfort … Of course I have the medical diagnosis from the various doctors and specialists. Logic and my brain tells that I have the dreaded disease but I find it difficult to accept it. As with many of the participants, Des’s experience of living with advanced cancer was dominated by the effects of treatment for cancer – the side effects of chemotherapy and radiotherapy – as well as by logistics of medical tests, consultations and care. Here the spectre of cancer takes on a physical presence: it haunts his body through the embodied consequences of its attempted eradication; it makes itself known through the shortness of breath, the sore throat and oppressive tiredness that are lived and felt as ‘normal’ side effects of treatment for cancer. While Des expresses his underlying hope that the treatment will ‘work’ and, in the end, offer a ‘curative approach’, living with the spectre of cancer in the meantime offers considerably compromised conditions of possibility.

Discussion The use of diaries certainly shifted our attention, reinforcing the importance of constant reconfiguration of our epistemological and methodological practices (Zimmerman & Wieder, 1977). By broadening the temporal frame and distancing the participant/storyteller from the researcher, we were able to see various dimensions of the practice of survivorship that are less visible through conventional social science lenses (also see Meth, 2003). In the seemingly pedestrian areas of everyday life, we see the consequences of enduring normative affectivities, discursive constructions and cultural imaginaries of everyday practices of survivorship. Waiting emerged as a particularly important theme, prompting us to follow Schweizer (2008) in considering the temporal aspects of life with cancer. How do we wait with cancer; must we wait for it/with it; how (and when) will the waiting end; what is waiting; how do we experience time while waiting? In the context of cancer,

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waiting became a form of temporal dislocation – a forced, though often partial, removal from the steady velocity of normal social existence, and one that participants often hoped would be temporary: many wanted not to wait. For some, waiting entailed the predicament of ‘having time without wanting it’. As Schweizer explains: ‘Between hope and resignation, boredom and desire, fulfilment and futility, waiting extends across barren mental and emotional planes. Those who wander in it or through it find themselves in an exemplary existential predicament. ‘having time without wanting it’ (2008, p. 2). Our participants recounted a normativity to waiting; while waiting was neither chosen nor explicitly prescribed, it was nonetheless expected (‘you must wait’, ‘you must rest’, ‘you must get better/survive’). The content of waiting – what occupied participants in the meantime – was revealed by the diaries to be a complex set of things containing varying forms of affect, agency, resistance, power and authority. Gordon’s (2008, 2011) theory of haunting helps us to illuminate what affectively occupied participants’ time while waiting. But this, too, leads to a series of questions: by what, exactly, were they haunted? How did this haunting manifest, and with what consequences? In this case, we saw the hauntings of medical knowing and expertise and the forms of bodily occupation that emerge from ontological assemblages of authoritative epistemologies, somatic experiences of malady and cultural expectation around cancer survivorship. In interrogating the omnipresence of clinical knowledge and regimens in the everyday lived experience of cancer, we do not wish to argue that oncological forecasting is undesirable, inaccurate or unnecessary. Rather, we seek to ask, through person-centred accounts, how and in what ways does such forecasting affect the individual with cancer, and what affective dimensions does it produce? We do not seek to question the utility of the biophysical ontologies of oncology, but rather to add to them by examining the various complexities of lived experience. And it is here, in the lived experience, as chronicled by our participants, that such hauntings became apparent and the spectres emerged. The spectre of clinical prognostications hung above participants and often subsumed their ambitions, desires and hopes, entrapping daily life within cycles of medical surveillance. Through their accounts, we posit that the phenomenology of waiting and its discontents is necessarily a struggle with the utility, and competing forms, of knowing. At the same time, the diaries illustrate the mixed feelings of participants in relation to medical expertise, the palpable relief brought about by the scan when it shows no disease progression and the strength of desire to vanquish disease and achieve remission. There was also a desire for goals or targets, which required surveillance, against which to show ‘progress’ or ‘successes’. Any notion of success, though, is necessarily situated within a set of particular values and priorities. The privileging of time and cure, and the downplaying of symptomatology and quality of life, are two key examples that emerged from the diaries within this study. The problem with waiting is embedded in the contrast between the institutional values that shape biomedical approaches to the cancer patient and that which is of value to the person living-with cancer in their everyday life. In instances where these do not align, there emerges a highly problematic set of experiences and affective tensions around illness and care. The notion of hauntings, then, helps us illuminate the dominance of particular orientations over

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others and the subtle ways in which power is exercised. Statements like ‘I am told [I have cancer]’, which were repeated throughout various participants’ reflections, illustrate this primacy of medical expertise and its dominance over lived experience, evident in repeated reflections about ‘not feeling’ cancer. Gordon characterises the complex operation of power in the following way: Power can be invisible, it can be fantastic, it can be dull and routine. It can be obvious … It can feel like remote control, it can exhilarate like liberation, it can travel through time, and it can drown you in the present. It is dense and superficial, it can cause bodily injury, and it can harm you without seeming ever to touch you. It is systematic and it is particularistic and it is often both at the same time. It causes dreams to live and dreams to die. (2008, p. 3) Like Gordon, we call attention to the contradictory effects of power: it is not simply a matter of medical discipline or the normativity of disease, expertise and surveillance. Power has mixed effects, being at once exhilarating and oppressive. This was evident within the diaries, as we see the mixed experience of disease and treatment, of forms of knowing, and how it can, as Gordon articulates it, ‘drown you in the present’. The relationship of patients with advanced cancer to authority and expertise is necessarily complex, and even fraught, given their resistance to incurable trajectories, elision by typical cancer categorisations (curable/palliative) and hopes, against the ‘odds’, for remission (McKenzie & Crouch, 2004). This level of complexity requires that we ask questions about what it is like for these groups of people, how they relate to (available) expertise and how this assemblage may simultaneously offer both potential and problematics. In chronicling their stories of cancer, the participants weave between their own views and those that are made available for them (that is, biomedical ontologies), challenging and holding onto that which is made visible and concrete. As a final point, we see an additional layer of potential contradiction or site of tension in the relationship between these types of categorically liminal people with cancer (‘terminal’ survivors) and the broader oncological and cultural terrain. That is, perhaps it is actually our participants themselves that haunt the oncological field as the failed subjects of oncology: the non-survivors, the unruly class of civil disobedience in an otherwise ordered field of ‘curable’ or ‘palliative’. Consider that our participants are concurrently imagining futures not well recognised in oncological forecasting, or indeed rejecting futures based on assessments of the quality of their lives. Perhaps they are the true spectres in the emerging oncological terrain, offering a challenge to the priorities and values of expertise, and with whom the field of oncology may yet have to reckon.

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3 MALIGNANT ATTITUDES

You’ve just got to have the right mindset as well and just follow the rules … Positive thinking helps. It’s almost like if you say things like, ‘Oh well, I’m fine because as far as I’m concerned, in my mind, it’s not really there.’ Karl, brain cancer patient Attitude is everything. Or so it’s said. Motivational-speaking discourse aside, ‘attitude’ has long been a central feature of contemporary cancer survivorship (Benedict et al., 2018; Philipp, Mehnert, Müller, Reck, & Vehling, 2020). On one level, this is nothing new. There is a plethora of sociological work on attitude (see Burles, 2018; Dew, Signal, Stairmand, Simpson, & Sarfati, 2018; Holmberg, Whitehouse, Daly, & McCaskill‐Stevens, 2015; Kazimierczak & Skea, 2015; Kerr, Ross, Jacques, & Cunningham‐Burley, 2018), as well as considerable psychooncology work around the various dynamics of having a positive attitude and of coping well (De Raeve, 1997; Friedman et al., 2007; Reiche, Nunes, & Morimoto, 2004; Rittenberg, 1995; Trejnowska, Goodall, Rush, Ellison, & McVittie, 2020). In this chapter, we seek to examine more closely the social significance of the multifaceted character of what is routinely articulated as ‘attitude’. That is, we ask: what is attitude in the context of living-with cancer? What work does attitude do, and for whom? We posit that attitude is an enduring narrative elixir of the contemporary cancer milieu. But it is also a modern panacea for all kinds of afflictions, reflecting the broader individualisation of everyday life (Beck & Beck-Gernsheim, 2002), a neoliberal nudge toward ‘self-work’, with considerable normative traction across many aspects of our lives (Lavrence & Lozanski, 2014). If we want to lose weight, beat depression or enjoy our work, reconsidering our attitude is, it is said, the way to go. Positive psychology (see Positive Psychology Institute, 2020) and the broader ‘life hack’ industry (see Lifehack.org, 2020) are part of the rising significance and valorisation of attitude in

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our everyday lives ( Johncock, 2020). This, as we will see, ripples across and through the experience of cancer. But is the cultural emphasis on attitude in living-with affliction really such a bad thing? What can be so problematic with the modern attitude industry in Western industrialised nations, and in relation to cancer in particular? Perhaps the best example of the downside of attitude is when it fails: when something cannot or should not be changed, endured or overcome, or when forms of suffering, melancholia, grief, hopelessness, helplessness and abjection are a critical part of an individual or collective process (Berlant, 2011; Farberman, 2019). And attitude, as it were, ‘fails’ an awful lot in cancer. In fact, around 30 per cent of people in Australia with cancer die within five years, and many more are never cured. Within this context, normative structures of ‘attitude’ within our cultural milieu can become, in some instances, a malevolent expectation and social practice of concealment, or even worse, a form of cultural silencing (Scoats & Robinson, 2020), governing and disciplining those who are most vulnerable. All of this can perpetuate, at least in some cases, some of the avoidable forms of suffering in cancer. For example, in our work we found that cancer patients marginalised by migration (and by extension, gender or language) tend to carefully regulate their attitudes towards treatment vis-à-vis the notion of the ‘lucky migrant’, one who is grateful, and are often reticent to claim entitlement to care services (Broom & Cavenagh, 2010; Broom, Kenny, & Kirby, 2020). Attitude, then, can be hugely silencing and can work at cross-purposes to social justice concerns, functioning as a malicious means of modern governmentality (Bradby, Lindenmeyer, Phillimore, Padilla, & Brand, 2020). As a noun, ‘attitude’ denotes a particular feeling or opinion, the way you feel about something or someone. In the context of cancer, however, attitude as it is culturally deployed is a complex and unruly entity, encompassing virtue, character and so much more. And what makes attitude so interesting in the context of cancer is its highly paradoxical features. The contradictions are palpable and omnipresent. On the one hand, the science of malignancy says that one’s psyche, however it may be measured and described, bears no actual direct or causal relationship to disease outcomes (Tod, Warnock, & Allmark, 2011). It is simply disconnected from cancer. And yet, in our cultural milieu and within the oncological scene, we all recognise that hope, positivity and resilience are at work in cancer (Brown, 2015; Vartak, 2015). Cross-disciplinary cancer scholarship, particularly in psycho-oncology, has emphasised the inherent ‘value’ of attitude or its various components (Caprara et al., 2016; Park, Dibble, Sinnott, Sanft, & Bellizzi, 2020), and the medical community has largely supported this narrative of the ‘power of positive thinking’, albeit, as outlined later, with a pinch of salt: that is to say, ‘it may help, but ultimately, who knows, and what have you got to lose?’ This is a confusing mix of logics. So what underlies this seemingly contradictory practice of attitude, from a cultural perspective? To back-track slightly, the scientific evidence available is quite clear – you can be as negative as you wish and it does not make your cancer grow faster (putting aside, for the moment, the ripple effects of treatment adherence, exercise, diet and

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so forth). There is no ‘solid’ scientific evidence that stress, negativity and so forth have any effect on disease progression or a causal role in the emergence of malignancies (McGee, 1999; Nielsen & Grønbaek, 2006). And we note, at this point, that we are not making a case either way; rather, we are making a statement about the current accepted scientific evidence. In contrast, there is good evidence that acceptance and awareness of eventual death, and of the seriousness and likely outcome of one’s cancer, reduces suffering for all parties (Yilmaz, 2020). Again, we are not advocating certain attitudinal characteristics by any means. Rather, we are asking why cultural contradictions around attitude are pervasive within the survivorship field, and what work attitude does within survivorship practice. Regardless of the prickly issue of scientific evidence around the ‘power of positive thinking’, attitude has a life of its own in the context of cancer, becoming things far above and beyond what ‘science’ says it can reasonably be (a precursor; a solution). Attitude, in this sense, requires unpacking in terms of how it works within survivorship practice, why it is deployed and what it achieves (across various actors and institutions). From a sociological perspective, what is so interesting about attitude is its diffuse, opaque and collective features, which frequently moonlight as features of the person. There is broad agreement across almost everyone involved in the scene of cancer – clinicians, patients, families – that this amorphous thing called attitude (whether good, bad or otherwise) matters deeply; but few ask how, and why, it is made to matter, by whom, and with what consequences (Voas, 2014). How is it that such incommensurable ontologies of effect (disease as biophysical versus recovery as at least partially attitudinal) have gained so much traction and salience in modern life? Such questions, we suggest, are extraordinarily important for comprehending how cancer is lived, and will lead us further toward the conclusion that attitude is a collective practice, and a moral and ethical domain of capture (for some people, in some circumstances), which operates within a broader ‘affective economy’ (Ahmed, 2004) of survivorship. In this sense, attitude sits at the nexus of affect, embodiment, subjectivity and cultural praxis (see Blackman, 2012; Broom & Tovey, 2007). It is a collaboration between different things, even if it is so often viewed in isolation. It is concurrently paradoxical, instructive, normative and transformative. This might appear somewhat contradictory for us to say, and perhaps even inconsistent with some of our participants’ accounts presented later. That is exactly the scene of attitude. It seems to emerge from the person, yet it is an intergenerationally, socioeconomically and culturally mediated formation (Diedrich, 2015) deeply embedded in the ethos of the day (for example, being successful and of good character, and achieving results through individual effort) and the economic demands of the modern state (prevailing, enduring and living on). The valorisation of attitude is, of course, part of the political economy of survivorship. The modern state requires active participation in the labour market by a tax-paying citizenry and, in the case of illness, presumes a swift return to productivity after recovery. This economic model of productive citizenship cannot accommodate diseases like cancer or other chronic conditions. Instead, it

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renders the afflicted subjects malingerers, caught somewhere between recovery and death. The cycle is somewhat circular, but essentially it settles on the idea of affliction as a temporary dependency, which requires a commitment to a ‘return to normal’, supported by the right attitude, in order to gain legitimacy. This vision underpins the promise of the good life, as Berlant (2011) has expertly demonstrated, and is supported by facets of the psychology profession, which has taken advantage of this opportunity for therapeutic expansion, offering a range of psychotherapeutic techniques to assist in the individual production of hopefulness, coping, resilience and recovery (Youll & Meekosha, 2013). Individual attitude was transformed into the gel that binds together the manifold forms of neoliberal coercion (for the ‘big society’ push, see Norman, 2010). Importantly, by placing the emphasis on the individual, the positivity injunction elides enduring structural inequities around class, ethnicity, gender and other social dynamics which determine our capacity to ‘live well’ (see Lewis, Willis, Yee, & Kilbreath, 2016). Attitude, we argue, is in desperate need of critical interrogation, a process that we seek to encourage here.

The Power and Paradox of Attitude This chapter draws on the second period of qualitative data collection outlined in the Introduction, which took place between 2015 and 2019 and involved interviews with a broad range of people living with cancer. Attitude was one of those issues that almost always arose in our discussions, even though we did not explicitly set out to ask about attitude per se. We did not take a view one way or another about attitude, nor did we convey any particular position to our participants. Rather, discussion occurred naturally and iteratively, as a result of discussions around hope, intention, expectations (of others) and the causes of cancer. Participants became familiar with the various languages of attitude ( just have to have the right attitude; don’t have a bad attitude; it’s all about attitude), so the interviews were a mix of their own views (what attitude is, whether it matters) and their experiences of others’ perspectives. Across a number of participant accounts, where one’s ‘mind is at’ was viewed as critical to chances of recovery, with a positive attitude widely considered protective and the idea of a ‘sick mentality’ eschewed. Stuart, who was living with gastro-intestinal cancer and was in his fifties, illustrates the conviction of the power of the mind in his reflections on his approach to healing: I could actually feel my body healing with my mind … My mind has been so strong and I can actually feel my body from the inside getting stronger and stronger … When I eventually got home I knew I could beat it … I always believe in where your mind will go, your body will follow … The power of the mind, and [the doctor’s] words, I’ll never forget: ‘A strong mind, clear conscience, with no regrets.’ I said, ‘Why?’ He said, ‘Where you’re going to go will be very disturbing for you. Your mind will just play

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tricks. It’s up to you, your mind, and God whether you live. You’re in God’s hands.’ I’m not a religious person, but I believe that. I truly do … Anything negative comes into my mind, I just try to block it. Then I just get up and do something and just say to myself constantly, ‘Where the mind will go, the body will follow.’ I used to say that probably a million times a day: ‘Where the mind will go, the body will follow.’ These sentiments were echoed by Jane, a breast cancer patient in her sixties: Look, I’m positive. My sister’s had a couple of cancers and she’s totally the opposite to me … I’m sure people think – I say, ‘Hey, I’ve got sixteen tumours here.’ I have, but she’s all doom and gloom and sick. I don’t have a sick mentality. Stuart’s and Jane’s comments reflect a common narrative that appears throughout our work across contexts and continents (see Broom, 2009a, 2009b, 2012, 2015; Broom & Kirby, 2013; Broom, Kirby, Adams, & Refshauge, 2015; Broom, Kirby, Good, Wootton, & Adams, 2013, 2014; Broom, Kirby, Kenny, MacArtney, & Good, 2016; Broom & Tovey, 2008a, 2008b; Dragojlovic & Broom, 2017): the centrality of attitude in the cultural imaginary of cancer and of wilfulness in securing recovery (see also Frank 2002, 2003). Our research participants were not necessarily acceding to a social demand that they perform cheeriness or optimism for the benefit of others; rather, they internalised, or inhabited, a positive attitude as a way of being. This psychic investment in attitude contrasted with a preponderance of biomedical evidence, yet remained a pervasive and persuasive imperative. But as we discovered through our conversations with the participants, the story of attitude was more complex than we might have at first believed. Many held disparate, even paradoxical, positions concurrently. We view this as a curious feature of the unsettling lifeworld of cancer rather than something to be reconciled. Specifically, there was a commitment to the potency of attitude among many, but also a questioning of the context in which attitude was exercised. Holding these concurrently – the power of attitude, but as produced across/ through many different actors and institutions – gets to the crux of many of the arguments we pursue in this book. Jan, who was diagnosed with lung cancer in her sixties, casts attitude as a site of active management of one’s sense of self, or ‘the way you are’: I never discussed with anybody how hard it had been. No. That’s defeatist, I thought … You just can’t walk around all day going, ‘Oh, poor me.’ Actually, I’ve got a thing in my phone where I do affirmations. One of them I say, ‘To have self-pity or resentment or anger makes me an incredibly boring person.’ … It’s true. But because that’s the way you feel, that’s the way you are. It’s not an act.

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Iris, living with lung cancer in her seventies, also invoked a particular mantra to help her inhabit the ‘right’ attitude: It’s quite pointless saying it was this fault and wanting to go back to before. There’s no point. You can’t. There’s no point whatsoever. You’ve got to keep going forward and be positive or hopeful … I keep saying, ‘This is going to work. This is going to work. This is going to go. This pain is going to go.’ Not only was the ‘right attitude’ embraced by people living with cancer, it was also admired and set as an example by people who had watched as their family and friends dealt with cancer. Harry, who was in his eighties and living with lung cancer, recounted how his daughter had approached the cancer that eventually killed her: She never got onto it quick enough and it went right through her and it finished up to her brain. She was a strong woman. She never whinged or whined. She was sixty-three when she eventually died. When she found out she had it she said, ‘Well, I’m going to get my super, I’m going to travel everywhere.’ She was a strong woman. She didn’t sit down and cry and worry about it. ‘Getting on with it’ was a prominent theme for our participants, although Iris, a lung cancer patient in her seventies, relays how moderating emotions was a continuous process and at times a struggle: I don’t think about the bad times. I hope they are quite a long way off. If they’re not, well … I do sometimes think, ‘What if this isn’t this? What am I going to do if [the doctor] says [no more treatments]?’ … Most of the time I like to think I’m coping all right. But at, say, 4 in the morning it’s not a good look sometimes … You wake up at 4 am. It’s dark. I have been known to wake up crying. As I say, it’s dark and there’s someone there, but you think, ‘Oh no.’ But then you think, ‘No, it’s okay.’ There is considerable complexity behind the simple concept of a ‘good’ or ‘bad’ attitude in cancer. Attitude carries the weight of a person’s – and society’s – expectations of themselves and their ability to endure hardship. When participants stress that attitude is ‘not an act’ or praise the fortitude of a loved one who ‘never whinged’, they are speaking to the virtue of the ‘good attitude’. Yet these approaches also mask suspicions that a ‘good attitude’ is an unrealistic or burdensome expectation, as against the value of personal authenticity. The different, and conflicting, demands of attitude make it quite hard to ‘pull it off’ coherently in everyday survivorship practice. The dual demands of being positive and being authentic produce a paradox, which is collectively policed. This is powerfully illustrated by Jennifer, who was being treated for breast cancer in her forties:

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I hate that word ‘positive’, because I’m always positive and I do get sick of people telling me to be positive. That’s my worst word. I just can’t stand it, because I don’t know why they think I’m not positive. I am, I just can have a bad day, like everybody, and that could be just normal life stuff, not necessarily cancer. So I just let myself have those days … [Family members are] coming from a place of that they don’t know what to say to me. I’ll be honest, they don’t know what to say. My father doesn’t know what to say to me. My sister doesn’t know what to say to me. They’ll always just say to me to just be positive. As shown in Jennifer’s response and many of our other interviews, maintaining positivity and a ‘good attitude’ was very much part of participants’ choreography of survivorship within the collective, which provided something to say (‘just be positive’) for those who find the topic of cancer and mortality too difficult (‘don’t know what to say’). A ‘good attitude’ becomes, in some instances, a way of concealing, suppressing and evading the horrors of disease, the presence of suffering and the inevitability of death. It is, in one sense, a form of care for others (by those who are themselves afflicted) and, in turn, a form of disciplinarity as an implicit demand from those who are ‘meant to care’: that is, the nonafflicted other. Attitude is thus relational, enacted across the self and others and imbued with a wide range of (paradoxical) performative demands and forms of virtue.

Moral Attitudes (and the Push-Back) The demands of attitude were a prominent theme across the interviews, intersecting with a variety of forms of moral questioning and even coercion. The moralities of cancer are essentially the social infrastructure encouraging or discouraging attitudinal dispositions. ‘Disposition’ refers to the way in which something is placed or arranged, especially in relation to other things (Bourdieu, 1990). Moral consciousness circulates through all of the participants’ stories, though some spoke about this moral infrastructure (see Chattoo & Ahmad, 2008; Sayer, 2000) more explicitly than others. For instance, Martha, who was diagnosed in her sixties with lung cancer, criticised the self-affirming orientation of ‘survivorship’ as offering a false sense of security. In positioning herself as ‘a cynic’, however, she nonetheless makes visible the latent morality tales that inspire her scepticism: [The term] survivor, to me, means someone who’s beaten it, and until you’re diagnosed with no longer having it you haven’t beaten it at all. To me – cynic coming out – I think it’s just a term someone’s dreamed up to give people hope … I can see through a wool story, when people are pulling the wool over your eyes, basically. James, in his forties and in treatment for brain cancer, explained his active management of attitude, rationalising that for him, a negative disposition served no fruitful purpose:

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Nothing good. [Cancer is] definitely not a good thing to have. It’s not a good thing for your family to witness and to know about. You tend to start living with it, accepting it. I mean you have no choice and you just try and get on with your life as best you can. Do what you can, with what you can. Just like anybody. Just try and put a smile on your dial and get on with it … There’s no point in sitting in the corner and having a cry all day. What interrupts a ‘cynical’ reading is the same thing that interrupts the expression of nonconcordant dispositions – of grief, hopelessness, not caring, not trying and a plenitude of other feelings (see Broom & Cavenagh, 2011; Chapple, Ziebland, & McPherson, 2004; Sachs, 1996; Sointu, 2015; Wetherell, 2012). The counternarratives presented here are subsumed by the very moral frameworks they speak back to. But enough is disrupted in their articulations to illustrate the key threads of these moral/normative structures. As a moral problem that indicates the strength of a person’s character, cancer is imbued with a particular lexicon. In the following excerpt, we see the depiction of the typical ‘Aussie battler’, and the associated cultural valorisation of struggle in the face of adversity as an allegory for the moral character of the nation. For Adam, there is something uniquely ‘Australian’ about his dogged determination to endure. He described his experience of dealing with colorectal cancer in his fifties in the following way: There’s some dark moments there at the start … You just become more optimistic as you go along … At the end of the day, just give it a good crack. It’s the Aussie way to do it, and if it ever works out, I guess. Realistically, you’ve got no other choice. This narrative provides a useful reminder that the moral structures governing cancer survivorship are also located in broader cultural imaginaries: in making sense of his own experience of living-with cancer, Adam accounts for his attitude through an appeal to a normative concept of citizenship. Within the Australian context, it is popularly imagined that we are a laid-back, stoic, benevolent and uncomplicated bunch – an ethos that is also perceived to permeate Australians’ health behaviours and attitudes towards illness (see Braun, 2008). This mythology, however, can be viewed as an elaborate cultural performance that grossly misunderstands and misrepresents the emotional complexities of living-with illness. In Adam’s account – and perhaps more obliquely in other accounts that place a high premium on stoicism – what it means to be an Australian citizen makes its way into an attitudinal narrative that makes reference to the self as embodying the qualities of the nation. The ‘uncomplicated Aussie battler’ – in this case in the context of cancer – is part of a cultural moral structure that potentially suppresses the complicated and mixed affects of disease and struggle (see Bryant & Garnham, 2015), as people grapple with adjusting to an everyday life with cancer.

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Yet while some participants were comforted by moral frameworks that prioritise willpower, optimism and action, others strongly resisted them. There was palpable push-back throughout the interviews on these expectations and the associated pressures towards particular forms of action. These included recasting outlooks (illness as stable or controlled rather than positive or curable), challenging assumptions (in asserting that the mind has no influence) and dismissing normative ideas about the role of attitude in illness (in doubting that positive thinking is always beneficial). These participants were less accepting of, and engaged in an ongoing tussle with, the frameworks and collective pressures imposed on them, shifting and establishing their own views over time on the veracity of particular positions and trajectories. Stephen, a man in his fifties, recounts treatment of his rectal cancer: ‘Stable’ is my favourite word … ‘Positive’ is not, but ‘stable’ is, because I love hearing those words. If I’m stable, that’s great … So I’m excited about getting to five years and I think I’ve done really, really well to get to that … I’m hoping for that next five. I’m hoping I can get myself stable and keep as I am and stable and control it, I suppose, however I’ve got to control it … Stable, for me, meaning that I’m in control and it’s not controlling me … So I look forward and say, ‘Okay, I hope I get to ten, and if I get longer than that, anything is a bonus.’ Ron, also in his fifties, and in treatment of neuroendocrine cancer, resists the trope of the cancer ‘battler’: Working at the newspaper for fifteen years I hated this expression, ‘battling with cancer’ … I said, ‘I banned that expression. One doesn’t battle influenza, one doesn’t battle diabetes. Why is it that they always battle with cancer?’ … I banned it because the implication is, for example, someone like David Bowie at the beginning of the year, ‘He lost his battle with cancer.’ Now, there’s kind of a moral judgement there. Did he not battle hard enough? Was he a weak character? Did he give up? So that’s why I never use the term. One doesn’t battle diabetes. It happens or one catches it or whatever. No, I don’t know why that term ‘battle’ was always reserved for that particular disease. He continues: I don’t accept that. I don’t accept that. I don’t accept that. Yeah, lining up for chemo the other day … ‘Well you’ve got to keep positive, haven’t you?’ she said. I thought it’s just foolish. It’s just foolish. This whole concept of [Dale Carnegie], he and the self-help books and The Power of Positive Thinking and so on. I don’t know how you do it. I mean you hear of people sitting there, lying in bed in the afternoon pretending they’ve got little space invaders in their body zapping cancer cells and so on. The spirit and

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the energy and so on, I mean it’s all wacko stuff. The only energy the body has is a result of sugar being turned into glucose. That’s got no power to influence fast-growing cells. Liam, introduced earlier in this book and being treated for colorectal cancer in his thirties, resists the expectation to be ‘hopeful’: [They said,] ‘Well, we can just keep doing chemo to keep you alive’ kind of thing. I try not to be one of these people that are hopeful that everything is going to go to plan and it won’t be a problem and I try not to dwell on the worst of it all. It’s sort of right now I’m in the mindset of ‘We’ll look at it more at this point and I’ll worry about it then’. Whilst at the same time, I say this sort of stuff to the psychologist with a view of being prepared for the worst … I’m not keen on the idea of chemo forever, because it sort of feels like it becomes a downfall of you’re just existing. Liam’s story and the others shown here potently capture the challenge our participants gave to the cultural push for a positive attitude and the various logics underpinning their critiques. Ranging from readings of the moral pressure on people living with cancer to talk of the illusion of effects, our participants talked of having to create their own ambitions (stability) and forms of success (peace).

Attitude as Relationality: Policing Positivity A key theme running through the chapters of this book is survivorship as relational in all its undulations and ramifications. In some respects, it seems self-evident to centre the collective, rather than the atomistic individual, in considering cancer survivorship within a sociological frame. But to speak of attitude-as-relationality is to do more than reveal the collective pressure on the individual to be positive or determined. Rather, attitude-as-relationality is about the ways in which attitude is leveraged, desired, valorised and enforced (variably and across subjects). It is how attitude is practiced, in relation to the self and other bodies/things, rather than being indicative of the possession of a static quality or feeling. Through our participants’ narratives, we can see how particular actors fuel it, wish ‘it’ into being and react when it takes a different form than (seemingly) agreed. In this way, cancer is better thought of as an entanglement between the self and other: a dialectical tension between individual want and collective need (Broom et al., 2020; Stone, Kokanovic, Callard, & Broom, 2020). Relationality, then, as a practice, is absorbing and managing the feelings of others (such as hope, fear and grief; Bell, 2010). As shown in the following excerpt from Marie, who was diagnosed with neuroendocrine cancer in her sixties, every actor within the scene contributes to the performance of positivity and the demand for particular dispositions, while the responses of those around the person often work to ensure that a hopeful disposition is maintained within the performativity of disease:

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[My husband] just says, ‘You’re going to be okay and they’re doing all this stuff. You’ll be fine after this’, like it will all go away, and I said, ‘Well it’s not if you read about it or if you ask the doctors. None of them have said that, that this is going to cure you.’ None of them have said that. It just gives you a bit of quality of life … My daughters are very positive, ‘You’re going to be fine, mum’, and I don’t say, ‘Well that’s not what the doctors …’ [My husband] will shorten my life [laughter], rather than extend it, because of the anxiousness I feel around him. Marie’s account articulates relationality in the context of the family, how the desires of others come to dominate encounters and how ‘being fine’ may be enforced by family members. This was a common experience, as captured by Kelly, diagnosed with testicular cancer in his forties, with the ‘brave face’ being the common way of articulating family life in the context of cancer: You try and put on a brave face in front of your family and stuff like that, because if you break down then they do. I thought on the outside I probably done that, ‘I’ll be right. I’ll get through it. I’ll fight it.’ On the inside, [I was] all over the place, sort of a bit of a roller coaster … It’s the same thing, a lot of people don’t want to break down in front of you, which will probably make you feel bad, and they try and stay strong for you … Anything that’s positive in the media is positive for you, really … If other people can do it, you can do it, type thing. I think just a positive outlook. You don’t want to be down in the dumps. It just brings everyone down. Similarly, Marisol, who was being treated for multiple forms of cancer in her sixties, asserts: I have never felt sorry for myself or made my family feel sorry for me. Even if I’m suffering I try to not let them know how much I’m suffering, so they don’t suffer. Even my granddaughter say, ‘Grandma, I admire you. You’re so brave’, and that’s good because they have to be brave if someday they get sick … Well, if they see me sick, that I feel terrible, they’re going to feel the same because one of my daughters, I think she even reads my mind [laughter]. Cancer is painful. Gerald, a lung cancer patient in his sixties, also recounts being ‘strong’ for others: ‘As far as getting depressed at the thought of having cancer, I hope I survive for Pam’s sake. To me, I don’t care … It will be what it will be.’ Martha, who was being treated for lung cancer in her sixties, similarly remarks on how she and her husband moderated their expectations and hopes: There’s no cure for the cancer I’ve got … I’ve only had three [trial] treatments, coming up to my fourth, and I have noticed my energy levels

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increasing. But I try not to be really hopeful, because things could change later on … [My spouse] was in denial for a while … He has always said, ‘Expect the worst, hope for the best’, and when I went to the specialist that’s what I kept saying to him, ‘Expect the worst, hope for the best, but I’m not expecting good news’ … When the doctor said chemo wasn’t working, it was bittersweet because I thought, ‘That’s good’, because I hate being on it, but at the same time I knew that it was a hope. Todd, who was being treated for prostate cancer in his sixties, also describes a kind of containment of his negative thoughts and feelings to spare others around him: If you can get your thoughts together and get yourself on top of it, that’s 90 per cent of the battle. But some people throw it in and say, ‘What’s the use? I may as well go and throw myself off a cliff. I’ve got cancer.’ That’s terribly counterproductive. It doesn’t do anyone any good and it would be terrible for those around you. In contrast, Stuart, who had gastro-intestinal cancer in his fifties, describes how facing the possibility of his mortality was ‘disturbing’ and how he dealt with it through morbid humour from his wife: When [the doctor] said to me, virtually, ‘We’re not too sure if you’ll live through it’, that was very disturbing … The way I felt then, I could have just closed my eyes and went to sleep and never woke up again … [My wife’s] exact words were, ‘If you don’t have the operation, I’m going to kill you anyway. So you’d better have the operation and you’d better live through it.’ These accounts demonstrate the relational dimensions of the demands of attitude, of displaced, or replaced, desire and of ambitions for the self as refracted though others. These relationships extend from the participants’ direct family members right through to the broader community (including social media) in the creation and enforcement of normative ideas about the appropriate disposition. Liam postulates: I don’t think that people want to hear about you talking about dying or that people have so much hope for you … It’s one of those things that people probably get a little bit upset with you and say, ‘You’re being negative and don’t think like that.’ It’s one of those things where you want to say, ‘Well this is a serious part of it. It’s something that can happen.’ Similarly, William, diagnosed with neuroendocrine cancer in his fifties, observes: If you talk too much, people perceive you as a whinger. I don’t talk to my mates about it. One rang me up the other day and he says, ‘Good to see you’re not dead. I thought you might have been dead by now’, but that’s army blokes.

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But what makes a relation of attitude policing such a malignant practice, as outlined in our title to this chapter? In the following extracts, participants express a keen awareness of a cultural perception that attitude has material or ontological capacities in potentially causing the cancer in the first place and in directing the course of cancer in the body. Attitude policing, then, is a kind of moral injunction that the person living-with cancer take personal responsibility for becoming sick and directing the course of their illness towards becoming healthy again through the power of thought (for example, you’ve brought this on yourself; you got yourself sick, you can make yourself better; if you are doing badly, it’s because of you). This is a predominant and pernicious influence in the cancer landscape, which shapes views of responsibility and accountability in ways that have little basis in biomedical science. Belief in the power of attitude, in contrast to the science of disease, can create a paradox for many people, particularly when it is endorsed in the clinic. Our participants’ accounts showed an awareness of how attitude is thought to intervene in the cancer experience. In their various ways, the participants confronted dominant ideas about attitude as both causal (as an explanation for how one got cancer in the first place) and potent (in exerting control over the course of the cancer). This logic of personal responsibility was routinely perpetuated by psychologists, oncology clinicians, other cancer patients and family/community members, who contributed to the broader sense of cancer as a personal production imbued by one’s approach to it rather than a biophysical event. As Alana, a neuroendocrine cancer patient in her fifties, explains: It also concerns me when you get people who are so bent on that route that, well, does that mean that it was my fault that I got this? I sort of sometimes feel like turning the table around and saying, ‘Hang on. I’m still here. Maybe that means I’ve done a good job.’ The blame could then go the other way because you’re not positive enough if you’ve brought this on yourself. While Alana flatly questions the logic of blame, Natasha, who is undergoing treatment for brain cancer in her fifties, is more circumspect about the role of thought in materialising illness: I think too much. That’s probably why I’ve got a brain tumour [laughter]. It is. They reckon you attract things … I just had this fear. I was questioning life. I was thinking, ‘Is this all it’s about?’ … So in a way, I was wondering if I asked for it, in a way, and I was always overanalysing everything and thinking too much. Jane also remarks on the theories of others regarding her breast cancer: There were some people that meant well but would say they really believed that you gave yourself cancer … It’s a bit of a new age hippie theory that floats around … I don’t think I wanted to hear about that at that stage … A

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lot of theories – and it’s mainly to do with diet. Stress, I was obviously too stressed, ‘This is how you give yourself cancer’ … and they’d come out with all this type of thing. So mainly to do with stress … Then calm, I must be a negative person, not thinking positive thoughts. Eileen, in her fifties, recounts a similar encounter with her psychologist regarding her lung cancer: My psychologist [is] more concerned with my relationship … and keeping my stress down, because she’s saying, ‘Stress creates adrenaline and adrenaline creates growth. So stop it’ [laughter] … I’m supposed to do meditation and all that sort of stuff. I was watching what I was eating and all that sort of stuff. They’ve just said now, ‘If you want to eat it, eat it. If you don’t, don’t. There’s no point now.’ While we acknowledge the complexities of ontology and epistemology and recognise the importance of not offering another normative layer across cancer (that is, denying positions that extol the vitality of things), one can also see from our participants’ responses the messiness of the ‘treatment’ of attitude in the scene of cancer, in the ways it can be woven into issues of responsibility, causality and opportunity. This requires, as we argue through this book, ongoing critical attention.

Discussion It would be simple to just write off attitude through critique as an individualised distraction from the social world, but this is not what we have tried to do here. Rather, and in line with Sayer’s recent work on ‘character’ (2019), we have sought not to dismiss its significance or vitality but to capture the varied and subtle forms of work it does in the context of cancer. Attitude is powerful. It binds people together (oncologist and patient, patient and family) and it offers a sense of control, autonomy and order in an otherwise messy and disempowering scene. Attitude is mystical: it is unable to be meaningfully measured, but also unable to be effectively dismissed. Attitude is at once person and performativity, representing a perpetual contest between authentic selfhood and collective demands. In cancer, attitude occupies a troubled, ambiguous and divisive space: everyone ‘knows’ that it matters deeply, and yet everyone also ‘knows’ it doesn’t seem to really matter at all. These incongruous positions are well articulated across the participants’ accounts. Where does this leave us? Attitude provides the moral turf on which the ‘good patient’ is made or fails to be made (e.g., see Steinberg, 2015). In this sense, it is a binding practice, orientating us towards a particular goal (survival, longevity, happiness) and gathering energy around particular ambitions and desires. In sum, attitude can be and is whatever we make it – in the mind, in the collective and in the body – and is the way it is because of the cultural assemblage

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that produces and reproduces it. In this sense, what is malignant about attitude is not its affects per se but rather the desires that enforce some feelings over others and place the burden of emotional demand on the very people who are already burdened by cancer and its treatments. As to the question of what difference attitude makes – from our participants’ perspectives, it makes all the difference and no difference at all; it is a form of liberation and entrapment; and it is a freedom within disease and a prison of collective desire for persistence above all else.

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4 ENTANGLED AND ESTRANGED

It is not merely that the future and the past are not ‘there’ and never sit still, but that the present is not simply here-now. Multiple heterogeneous iterations all: past, present, and future, not in a relation of linear unfolding, but threaded through one another in a nonlinear enfolding of spacetimemattering, a topology that defies any suggestion of a smooth continuous manifold. Time is out of joint. Dispersed. Diffracted. Time is diffracted through itself. Barad (2010, p. 244) ‘Be present’; ‘live in the moment’; ‘focus on the here and now’; ‘take it one day at a time’; ‘be mindful and live well’. The sheer volume of cultural maxims offering guidance on how to act in the present speak to the problem we seek to explore in this chapter: the collision of past, present and future, the inescapability of memories and future visions, and their haunting of everyday life for those living-with cancer. We also want to show how the ‘here and now’, as a relational mélange of past, present and future (see Bergson, 1992; Brannen & Nilsen, 2007; Deleuze, 1988), is imagined, felt, lived and embodied by the subjects of cancer in relation to other bodies and things (Barad, 2010; see also Ahmed, 2004). The sociality of entanglement has been explored across a range of domains, including feminist, posthumanist and queer philosophy (Barad, 2007; Chen, 2012; Giffney & Hird, 2016; Haraway, 2007), affect theory (Adams, Murphy, & Clarke, 2009), obstetrics care (Sänger, 2015), population genetics (Oikkonen, 2017), wine appreciation (Lara, 2017) and the neuroscience of autism (Fitzgerald, 2017). Such ideas have yet to be explored in the context of cancer. In this chapter, we focus our efforts on exploring the mutual enfolding of temporality and relationality (Broom, Kenny, & Kirby, 2020; Crossley, 2011; Kenny, Broom, Kirby, & Ridge, 2019; Kenny, Broom, Kirby, Wyld, & Lwin, 2017). What does this mean in practice? For many people living-with cancer, the tussle with (and in)

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time is acute, profound and palpable (Olson, 2015; Pedersen & Obling, 2020). From the moment of diagnosis, all dimensions of time are diffracted and reassembled in unique ways, re-threading not only the future but the present and past as well. The present demands attention, asking for complete conviction and commitment to live it to its fullest, whatever life one has left. Good cancer citizenship also demands future planning (Brown & Rappert, 2017), which is often mediated by a range of significant others. Yet the past offers its own source of iterative dis/continuity, calling into question the value of the particular life we have lived/envisioned in relation to impending death (Heyman et al., 2006). Living-with cancer thus becomes a series of temporal and relational entanglements that illustrate the ‘nonlinear enfolding of spacetimemattering’ (Barad, 2010, p. 244). It is these entanglements that we focus in on in this chapter, through dyadic interviews which allow us to see these connectivities in narrative form.

Entanglements of Time and Space Temporal entanglements are a curious, though ubiquitous, dimension of living-with cancer (Jain, 2007; Stacey & Bryson, 2012; see also Gibbon, 2013). In this chapter, we draw specifically on Karen Barad’s work on quantum entanglements, which, she emphasises, are ‘far more ghostly than the colloquial sense of “entanglement” suggests’ (2010, p. 251). According to Barad, quantum entanglement refers to the overlapping of matter, states of being and temporalities that bring phenomena into being. More than interaction between two or more distinct things, quantum entanglements imply intraaction – the re-iterative co-constitutive process of being/becoming in relation to other beings/things (Barad, 2010, p. 248). Barad argues that quantum entanglements ‘trouble’ the foundational assumptions of classical physics (and metaphysics), resulting in ‘a dis/ orienting experience of the dis/jointedness of time and space, entanglements of here and there, now and then, that is, a ghostly sense of dis/continuity’ (2010, p. 240). These ideas have considerable traction, as we shall see in our dyadic interviews. Barad draws on Jacques Derrida’s concept of ‘hauntology’ (see also Broom, Kenny, & Kirby, 2018; Gordon, 2008) to explore the spectral quality of the past and the future, and to question the ontological divisions between presence and absence, life and death (Derrida, 1994, p. 36). Important for our purposes here are the implications of this scholarship for conceptualising the relationalities and temporalities experienced by those living-with cancer and their significant others. What makes cancer illustrative of relational and temporal dis/continuity? All facets of serious illness challenge seemingly coherent ontological categories (see Pickersgill, 2019). From the moment of a cancer diagnosis (and its accompanying future prognosis), many of the assumed borders between things and people are called into question (Engman, 2019; Trusson, Pilnick, & Roy, 2016), and even haunted (e.g., see Broom et al., 2018). Prior to the ‘event’ of cancer, life maintains a semblance of ontological continuity – a sequential unfolding of past, present and future (Bury, 1982; Gallagher, 2017). Yet these temporal disaggregations collide in the phenomenology of living-with cancer, ‘troubling’ such classical temporal

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trajectories and demanding, instead, reconfiguration of the future to come, the past that was and the present that is (see also Jain, 2007). As Barad notes, ‘past and “future” are iteratively reconfigured and enfolded through the world’s ongoing intra-activity’ (2010, p. 261). Drawing on the narratives of our participants, we seek to illustrate cancer’s unravelling of any sense of continuity (of temporal unfolding) and its imposition instead of a sense of dis/location. Amidst the dis/ continuity of cancer, affective and temporal relations demand reworking as ideas around the self, others, here, there, then and now are reconsidered (Broom et al., 2020). Key here, we posit, are relations of hope, gratitude, distress, dread and the desire to be here (and not go away). Cancer thus elicits the spectral quality of existence (Ferreday, 2011) that remains successfully exorcised from the assumptions of classical ontology as well as the untroubled passage of everyday life (Barad, 2010; Derrida, 1994, p. 202; see also Gordon, 2008). While previous scholarship on the unsettlings of cancer has focused on individual experiences of terminality (e.g., Bell & Ristovski-Slijepcevic, 2011; Bury, 1982) and uncertainty, precariousness and disruption (e.g., Harrop et al., 2017; Mathieson & Stam, 1995), few scholars have looked at how cancer is experienced as an entanglement (but see Chattoo & Ahmad, 2008; MacPherson & Emeleus, 2007). Fewer scholars still have meaningfully examined these entanglements both with time (see Broom & Tovey, 2008; Kazimierczak, 2018; Kenny et al., 2019; Olson, 2011) and with others (see Broom et al., 2020; Dragojlovic & Broom, 2017; Gibson, Broom, Kirby, Wyld, & Lwin, 2018). The temporal is necessarily threaded through, and further entangled with, the relational in multiple intra-relationships with ‘others’ – bodies and things – here, now, then, there or elsewhere. While the dyadic exchanges that follow clearly present an account of relations between the person with cancer and their immediate ‘significant other’, they also offer an intriguing glimpse into the multivalent, and often ambivalent, relations that are produced in and through disease (Broom, Kirby, Kenny, MacArtney, & Good, 2016). Conceptually, we seek to draw attention to the collective coconstitution of living-with cancer and the importance of intra-relations with a host of ‘others’ in the phenomenology of cancer, which have gone largely unrecognised in the cancer literature. These relational entanglements are critically important because, as we outlined in the Introduction, they inflect what is done and what is thought possible within the collective scene of survivorship (see Steinberg, 2015). Crucially, the spectres of cancer’s ‘others’ transcend temporal localisation and traverse the past, present and even the future (memories re-membered, hopes and dreams for the future reconfigured). Such others (unborn children, hopes for partners, imagined grandchildren) ‘haunt’ the scene (Gordon, 2008), informing the life that has been/will be lived and how cancer – in the indeterminate borderlands that overlap illness and wellness – is lived in the meantime. This ghostly, or spectral, quality of cancer infuses its relations across time and place, disrupting the taken-for-granted, interrupting the continuity of time and making ‘home’ feel ‘unfamiliar’ (Gordon, 2008). It is here that scholarship on estrangement provides a useful lens for understanding the affective dimensions of cancer and caring relations. Sara Ahmed notes:

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The word estrangement has the same roots as the word ‘strange’. And yet, it suggests something quite different. It indicates a process of transition, a movement from one register to another. To become estranged from each other, for example, is to move from being friends to strangers, from familiarity to strangeness. The term is suggestive precisely because it names the process of moving from one to the other, rather than referring to different states of being. Hence the process of moving away involves a reliving of the home itself: the process of moving is a movement in the very way in which the migrant subject inhabits the space of home. (Ahmed, 2000, p. 92) It is this movement – this process of becoming – that we explore in this chapter. Departing from Ahmed, we turn to the question of how the estrangements produced by cancer can be experienced as a form of exile (Lutz, 1986; see also Steinberg, 2015), introducing a sense of dis/continuity with what came before and forcing a reconfiguration of the self (Said, 1990; see also Goldman, 1995). Both processes – estrangement and exile – are fundamentally bound up with the past: they imply constant temporal renegotiation. Yet, and as Ahmed notes (in the context of migration), stories of dislocation also help to relocate: they give a shape, a contour, a skin to the past itself (Ahmed, 2000, p. 91). This recalibration of the past and reckoning with the future resonates with the context of serious illness. That is, exile-in-disease necessarily occurs in relation to memories of elsewhere/beforehand and fantasies of afterwards/cure, often underpinned by the political economy of biomedicine and possibilities of biotechnology (DelVecchio Good, 2001). Of course, one might say that it is largely taken for granted that cancer will ‘change things’. Yet there are pervasive cultural assumptions, and silences, around precisely what will change, how and for whom, which often place normative constraints upon how one should live with cancer (Kromm, Smith, & Singer, 2007; Stage, 2017). Further, they can conceal, or even cause, various forms of suffering and distress (Steinberg, 2015). Because we often ‘treat’ cancer in isolation, rather than in relation, we miss the opportunity to examine what is happening across and between subjects and temporalities (though see isolated exceptions in Badr and Krebs, 2013; Traa, De Vries, Bodenmann, & Den Oudsten, 2015). Thus, in contrast to the somewhat monochromatic accounts of cancer survivorship that give primacy to the individual, we attempt to capture some of the technicolor of living-with cancer by foregrounding its dis/locations and dis/continuities within overlapping networks of ‘others’, paying attention to the affective relations that shape what can and cannot be done, imagined and felt, and how these ripple across bodies, space and time.

Entangled in Cancer In this chapter we focus on a specific data set of ninety-eight interviews with people living with cancer and their nominated ‘carer’ or significant other, conducted from

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2015 to 2017. In-depth interviews of between thirty and ninety minutes were conducted with individual patients and (separately) with their nominated carers. Qualitative data was analysed using an iterative approach to identify emergent themes and patterns in both the individual and dyadic interviews (Clarke, 2003; Eisikovits & Koren, 2010; Ezzy, 2002). Across the interviews it was apparent that living-with cancer extended beyond the bodily limits of the person with cancer, and far beyond the time frames of diagnosis/treatment(/cure?). Instead, cancer was experienced as a collision of past and future within the present, and carried with it a variety of normative implications for what one should do, how one should behave, what one should feel. Yet these imperatives often belied a far wider (and murkier) range of temporal and affective relations between selves, time and meaning, which became obvious around a number of sites and practices, including ‘making memories’, ‘anticipating absence’ and ‘maintaining normality’. Across these, the pressure to ‘make the most of it’ was variously borne by patients and carers (see also English, Wilson, & Keller-Olaman, 2008), sometimes giving rise to appreciation and gratitude (Kerr, Ross, Jacques, & Cunningham‐Burley, 2018) but also frustration and suffering (Dow, Roche, & Ziebland, 2012)

‘Making Memories’: The Dis/continuity of Past, Present and Future One site around which the past and future were, quite deliberately, threaded through the present is the practice of ‘making memories’ – a practice especially relevant in instances of terminal or poor-prognosis cancer. As James’s and Anne’s interviews illustrate, the question of how to be (in the present) was explicitly articulated in relation to both how long the person with cancer would live and how ‘now’ would be remembered by those who outlived them. The spectre of cancer (and death), the omnipresence of the future in the present and the taboo of wishing ‘it’ (cancer/life) over were variously entangled with dynamics of exchange, obligation, desire and dread (Lawton, 2000). Importantly, these dynamics moved between people, cutting together/apart hopes, memories and activities in ways that were variously dis/continuous with what ‘was’ before. Daily living was reconfigured as much more than the here-and-now: past, present, future wove together and apart again, as seemingly antithetical narrations and desires articulated the same, but very different, situations. These dyadic moments capture how time matters not so much in terms of how much is left but in terms of how it occupies the moment, and how ideas of what we were (normal), what we are (ill/making the most of it) and what we will be (gone/bereaved/normal again) circulate and flow in the present to form the complex (relational) phenomenology of cancer in everyday life. As James, who was in his forties and being treated for brain cancer, asserts: JAMES:

You can’t fight it. There’s no point in whinging. There’s nothing you can do about it, so you’ve just got to get on with it. There’s no point in falling

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apart. I’ve still got a wife, I’ve still got [kids], and we’ve still got a house and that, so life’s got to go on. Okay, I can’t drive … can’t drink [alcohol] … Things have changed a bit, but it’s not too bad. It could be worse. So make the best of it. INT.: Tell me, how do you think it’s changed for [Anne]? JAMES: She’s got, I suppose, more to do … [but] it hasn’t changed heaps. It’s changed a bit, a little bit … Definitely not with each other. We’re still the same as we were. Anne, James’s wife, recalls: His two-year mark is up [soon]. It’s like we’ve just lived the last two years like he wasn’t going to be here [now]. So the [activities], the money we’ve spent on activities and making memories for the kids, and he’s darn well going to be here [beyond that] [laughter], which is wonderful, but – INT.: Yeah, it’s a really tough position to be in. ANNE: Yeah, given that prognosis, while we asked … So you’re obviously told the only information and statistics that they can give you. You really do take that, as a wife and a mother, you really do take that on board. Obviously it’s amazing that he’s not going to be a statistic and that he’s going to be around, [but] we’ll never fulfil what we wanted from our lives regardless of the time that he’s here … Don’t get me wrong, I want him here, it’s still very, very hard … In one sense you just want it to be over. You’ve built this defensive wall around yourself, that I’ve been preparing myself for two years that I’m going to be a [young] widow … and I’ve got young kids. So I’ve really built myself a defensive wall. Mentally and physically preparing myself for something that hasn’t happened … So you’re forever going, ‘Is this it?’ … ‘Is this the time we’re going to get told this is it, it’s all over?’ INT.: So is that something that is with you every day? ANNE: Every day … Our relationship has changed. He’s not the man that he was before … As a wife I’ve been building up these defensive walls around myself in order to protect myself emotionally, because you just don’t know what the future holds. We had these long-term plans … We feel robbed of that regardless of how long he’s here. But yeah, from a relationship point of view it’s been huge. ANNE:

James’s account emphasises the (desire for) continuity, relational ‘sameness’ and the need to retain the past within the present. Anne’s account, like those of many other carers, illustrates considerable discontinuity. In contrast to the ‘patient’, whose future is often contracted due to a terminal prognosis, the ‘carer’, like Anne, must negotiate between the future-with their partner and the future-beyond their partner. In this way, the present was often inhabited as the future’s past – as an opportunity of finite (if uncertain) duration in which to cement memories of the ‘other’ that would endure beyond the other’s physical presence. Many of the carers articulated a similar sense of temporal dislocation to what Anne described. Central to this was the act of prognosis,

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which, as Jain (2007, p. 78) has pointed out, is at once both ‘stunningly specific and bloodlessly vague’. This ‘paradox of prognosis’ imposes a variety of normative pressures relating to the past (remaining true to a ‘precancer’ me/us), present (making the most of the moment, securing the future’s past) and future (prolonging life while also ‘preparing’ for the end/beyond). Yet the inherent uncertainties of prognosis (see Timmermans & Stivers, 2018) meant that the ‘future’ anticipated by many did not arrive ‘on time’, leaving some carers with great relief but others with more conflicted feelings. Some, like Anne, inhabited the present in such a way as to ensure a particular form of the future (whereby they had ‘made the most of it’, and the patient/their time together was remembered in a positive light). Yet this mode of inhabiting the present was enormously taxing and was endured, in large part, by its anticipated short duration. For many carers, the problem of patients outliving their prognoses raised guilt-infused frustrations around them ‘still being here’, which, although articulated in the interviews, remained taboo and were largely silenced in their daily lives. For another couple – Alana, being treated for neuroendocrine tumours in her fifties, and Richard – ‘still being here’ was articulated amidst a range of desires for the ordinary and the extraordinary, illustrating the intensification of the present vis-à-vis the past and future, and in relation to the present as it continued to unfold beyond the original prognostic forecast: ALANA:

[Richard] asked me … what I was hoping for and I said, ‘I just want to see the kids finish school and then it would be good if I could see them settle into good relationships’, and we’ve nearly reached that point [laughter]. I realised that the other day and I thought, ‘Okay, now what?’ … I’ve got such vivid memories of that conversation … Those things [meeting future grandchildren or more travel] would be a bonus, but the most important things are just consolidating relationships. Nothing terribly ambitious … help [the kids] develop into the people that they want to be, which they are, they’re doing that … They’ll come to me and say, ‘What do you reckon about this?’ and quite often they will know that it’s a really meaningful question, because Mum’s advice might be something they’ll look back on in twenty years and say, ‘Geez, I’m glad I asked that question.’ It has … highlighted or intensified a lot of discussions along those lines. When you know it’s a significant question and you’ve got to give it an answer, it does intensify a lot of those discussions … Sometimes I say, ‘Piss off. I’m not talking about it’ [laughter].

RICHARD:

We did it [overseas travel] and we probably wouldn’t have done it if we didn’t have the stimulus to do it [cancer] … It was completely selfindulgent … I don’t think we would probably have done anything like that [without cancer]. We would have been sensible … When you get cancer … everything suddenly becomes fatalistic … If you give up on your future because the future is either going to sound like it’s going to be shorter or unpleasant – and cancer means shorter and unpleasant in

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most people’s minds – if you give up on your future, what the hell is the use of living at all? On the one hand, Alana articulates her desire for continuity and her hopes for ‘nothing terribly ambitious’, to continue living as she has in the past for as long as possible into the future. But the threat of the future nonetheless intensifies the present, illustrated here through ‘Mum’s advice’, which takes on intensified meaning because it may not be available in the future. Alana sometimes goodnaturedly resists such intensifications, telling the kids to ‘piss off’, using humour to preserve relational normality and temporal continuity. Yet the presence of cancer also presented a welcome opportunity for discontinuity – articulated by Richard in relation to overseas travel, which otherwise would have seemed too ‘self-indulgent’ and not ‘sensible’. In these various temporal and relational practices around ‘making memories’ (Anne), ‘consolidating relationships’ (Alana) and not ‘giving up on the future’ (Richard), the present is made to matter in ways that are inextricably caught up with the past and future. As Barad puts it, ‘“Now” is not an infinitesimal slice but an infinitely rich condensed node in a changing field diffracted across spacetime in its ongoing iterative repatterning’ (2014, p. 169).

Anticipating Absence: Spectres of Cancer in the Present Another way in which cancer precipitated the future’s intrusion into the present was through the disruption of established relational dynamics. Numerous participants across the dyadic interviews articulated how living-with cancer resulted in variants of ‘not knowing how to act’, both in relation to one another and in relation to the ‘external world’. Cancer manifested a spectral presence – at once inescapably everywhere and nowhere in particular – and infused relations in a similarly elusive yet deeply unsettling way. Prognosis was concurrently dismissed as irrelevant (‘I/they will outlive it’) and acutely felt (‘I/they could be gone next week’), resulting in relational alignment within some dyads but considerable divergences (as with Anne and James) in others. Such tensions often played out around imagined end-of-life scenarios and, in some instances, unconsciously through participants’ dreams. Dreams have an uncanny capacity to unsettle the containment of difficult emotions, as illustrated by Alan and his wife, Debbie: DEBBIE:

There’s some days that I just want to yell and smash everything to pieces. I try to be strong for [Alan]. He worries more about me than himself. He always says I’m more sicker than him. I suppose it’s just, ‘don’t let it win or you’ll just crumble’. What’s the point? There’s some days, of course, that I just lose it. I’ll just cry and cry and cry … It’s weird. Some days I can be so strong and other days it just … [trails off] But it just consumes your life. It really consumes your life … I’m dreaming about his funeral now. I think about it a lot lately … Four years, four years, four years is the norm. This is consuming me at the moment, of how the hell am I going to live without Alan? But then I’ll just

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get it out, ‘Come on. Get up’ … I don’t know, some days I’m just a bit blasé, a bit over it … Should we be happy? Should we mope around? Do people think if we’re too happy, like, ‘Oh god, look at them. They’re so happy.’ Sometimes I don’t know how to act in front of people. ALAN:

Dealing with death is not easy … [I’ve told Debbie,] ‘Okay, if I die, burn the shit out of me and throw me in the water and I’ll just follow you up and down the coast. When you’re at [the coast], I’ll be at [the coast]. Doesn’t matter what water you throw me in. You can tip me down the sink. I’ll make it to the ocean.’ Just stuff like that … I try not to think about it too much, because I’ll be here for a while. I guess that’s probably the most depressing part about it, is leaving the loved ones, the family … Look, it does affect me. I can’t say that it doesn’t. I do stress. I think, at the end of the day, I worry more about what [Debbie’s] going through than what I’m going through sometimes.

These accounts illustrate a relational ambivalence, with Debbie expressing the significance of Alan’s (anticipated) funeral indirectly, through its occupation of her dreams, and Alan dismissing the necessity of a funeral for him at all (‘burn the shit out of me and throw me in the water’). Despite multivalent tensions throughout their dyadic interviews, the relational entanglements remain apparent, with Debbie professing, ‘I try to be strong for him’/‘He worries more about me than himself’/‘I don’t know how to act’. Similarly, Alan acknowledges that dealing with death is difficult, but then issues instructions to ‘tip me down the sink’. His reflections are similarly ambivalent: ‘I try to not think about it’/ ‘it does affect me … I do stress.’ Amidst concurrent feelings of dismissiveness (of cancer’s significance), acuteness (of its omnipresence in the moment) and anxiety (about the future), certain affective dimensions become concealed – through a range of taboos, pragmatisms and necessities. Yet they re-emerge, breach containment, even erupt, in the form of dreams or days when ‘I just lose it’. Throughout, the future unsettles the present – leaving those living-with cancer uncertain as to what they feel and how they should act. In some respects, both Alan and Debbie are temporally estranged; the precariousness of the future has made them exiles within the present, unsure of how to be in the moment and trepidatious about what the future may hold. Yet the normative pressure to enact good cancer citizenship (and caring relations) was nevertheless present, in the awareness of not being ‘too happy’, not ‘moping around’, and ‘getting on with it’. Our analysis revealed a similar sort of estrangement among other participant dyads, often in relation to the expectations of others and along the lines of gender and class (see Seale & Charteris-Black, 2008), but also in relation to participants’ own selfhood, with cancer disrupting their very notion of who they are/were/will be. Recall Nancy, who was diagnosed with brain cancer in her thirties, and whom we introduced in Chapter 1: NANCY:

I don’t think I even started processing the enormity of everything until probably at least a month after I was home, and I think to a certain degree

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I’m still processing now, I think, in the fact that I’m not the same person … It’s a loss of everything … The biggest thing is that I have to get to grips with the fact that I’m not the same and I never will be, but I’m trying to get it in my head that it’s not a bad thing. It’s just a learning curve. I’ve been given an opportunity to learn something else about myself, and I just have to keep in that mindset because I can’t go backwards. I can’t go back to who I was, it’s not possible, and you can’t really move forward if you’re constantly back. I just have to suck it up and just keep going. Easier said than done some days, absolutely … I think friends know me better than I know myself sometimes. They’re like, ‘You’re the strongest person we know. You’ll be fine. You’ve got this.’ INT.: Is that helpful to hear? NANCY: It is helpful. Some days it’s really not, because you don’t feel strong and you don’t want to be strong. You’re just tired and you’re sick of feeling sick and you just want to be able to have a normal day where you don’t have to take a nana nap in the afternoon because you’re tired or you don’t have the energy to do anything … So those times when you’re having a shit day and someone says, ‘I need you to be strong’, it’s like, ‘I can’t today. Today I really can’t.’ [crying] … It’s just you feel like you don’t really have a choice sometimes. You just have to be strong for them. For Nancy, living-with cancer produces a sense of temporal dislocation, of a present and future that is dis/continuous with the past: ‘I can’t go backwards’/‘you can’t really move forwards if you’re constantly back.’ It also illustrates the normative expectations that one ought to orient oneself towards the future, commonly expressed both culturally and across the interviews as ‘making progress’ or, as Nancy puts it, the need to ‘just keep going’. This normative dimension of cancer citizenship often arose in relation to what was perceived as best for others (see SeppolaEdvardsen, Andersen, & Risør, 2016), as when Nancy articulated the un/helpful encouragements of her friends (‘others’) whose insistence that she was ‘the strongest person we know’ was quickly tied to achieving a positive outcome: ‘You’ll be fine.’ Across the interviews, others’ encouragements prompted self-evaluation, raising doubts about expectations and whether they were being met, and demonstrating the unsettling of normalcy that is frequently brought by the spectre of cancer.

Finding Normal? Dis/continuity in Relation to Others Past, Present and Future Relational and temporal entanglements often cut through one another in the dyadic interviews, with others’ past, present and (imagined) future inflecting what was hoped for, felt and done. This became apparent as participants explained how they navigated aspects of their lives in ways that were continuous with, or divergent from, their life pre-cancer. For some participants, the event of a cancer

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diagnosis and the prognostic corollary of a contracted future catalysed minimal existential disruption, with a professed desire to continue life as ‘normal’: ‘I just wanted everything to be normal. Don’t change anything’ (James); ‘I don’t want it [cancer] to be the centre of my life, and I just try and live as normal a life as I can’ (Sue); ‘I just live every day now as it comes. I don’t even think of the cancer. I just go about my normal living’ (Diana). For others, cancer provided welcome justification for a certain diversion from living-as-usual, while attempting to maintain affective continuity. As Florence, who was diagnosed with colorectal cancer in her sixties, explains: Well, as I said, my friend and I, we tottered off. We said, ‘Well, we’re both dying. We’ll go for a holiday’, which we did … Basically, I thought, ‘Well, if I’m dying, I’m dying’ … I remember saying to [my friend] when we were [on holidays], I said, ‘We’re probably luckier than other people. At least we know we’re dying. We can get things organised’ [laughter]. Basically, that’s the way I looked at it … If I want to do something, I need to do it … I mean, really, what can you do? … If you knew with 100 per cent certainty that you were going to die in six months, three months, twelve months, you’ve still got that time to live, haven’t you? I just took it. It really didn’t concern me greatly. It really didn’t get to me. That’s all I can say. I just accepted it. If they told me I had to do something, I did it and I just continued life as normal. Florence’s reflections illustrate the dis/continuity of knowing explicitly about one’s mortality, in the case of living-with cancer, and the universality of mortality that usually recedes into the background of ‘life as normal’. Other participants attempted to protect their ‘normal’ from the anticipated interruptions of the future, which nevertheless unsettled the affective and normative negotiations of the day-to-day, as can be seen in the interview with Scott, who was diagnosed with a rare type of lung cancer in his forties, and his wife, Lauren: SCOTT:

I haven’t spent this much time at home in years. It’s just a pity the circumstances, but I’m enjoying that time. So I’m not going to let anything else take that away from me, take the moment. The moment is now. Not down the track, it’s now. Why should I get upset about what hasn’t happened yet that will affect what’s happening now? So that’s how I look at things.

LAUREN:

I love my job, really love my job, but it’s really hard to leave in the morning. Sorry [crying]. It’s hard to leave him at home because you just don’t know what’s going to happen, and he gets lonely and that’s horrible. Because we know it’s not going to be forever, maybe I should be spending every minute [with him], but at the same time, you have to temper that with the fact that I need to bring in a wage. They gave us a two-year time frame, but he could still be here in five years or ten and so I can’t use all my leave. I just can’t do

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that. Also, for the children we have to keep some kind of routine and just some normality. While Florence’s approach to the future remained largely continuous with her life before cancer, more commonly, cancer’s unsettling of the future also unsettled the present, as in the case of Scott and Lauren. In some instances, the past was interwoven through the present in the imagining of life without cancer as the spatiotemporal location of ‘normal’, to which many participants hoped to return in the future. As Fran, diagnosed with colorectal cancer in her seventies, put it: ‘I’m hoping in the future that I get back to how I was before, can do things that I did before, and that I get the chemo, perhaps, out of my system, and that I feel like I did and [am] able to cope and live on.’ The past also recurred through the ongoing presences of those no longer present. For example, in the following instance, the previous death (from cancer) of the father of the family entailed multivalent meanings for the surviving mother (Diana) and daughter (Carrie). For Carrie, her father’s death, which occurred just weeks after a prognostic estimate of six months, demanded precautionary and fully cognisant future-planning (‘When will it happen?’), whereas Diana (mother/wife/now patient) took a more day-to-day approach of ‘continuing as normal’. This tension was a common theme throughout the interviews – between being fully informed and not wanting to know. For Diana, the very practice of prediction was implicated in her husband’s fate, whereas for Carrie, prediction becomes a demand to soothe the pain of the past as it recurs in the present. In both instances, the deceased father maintained an absent presence (or present absence): DIANA:

I just live every day now as it comes. I don’t even think of the cancer. I just go about my normal living … It doesn’t stop me from doing the things that I have to do. If it did, I’d be in trouble, because I’ve always been an independent person, and I like to do my own thing and I manage to do my own thing. So I’m happy about that. Each time I go for a CT … well, the last two times it’s shown that it has shrunk, both times, only minimal, but at least I know that I’m going to get at least another year. Because I’ve had a year. In March now, I’ve had a year. So I know now that I will probably get another year and then when that year comes, I’ll try for another year. So that’s all I can do. That’s all I can hope for. INT.: Do you focus on the future or do you focus on the moment? DIANA: The moment. Just each day … I just focus on each day … As far as I’m concerned, your number’s up the day you’re born. INT.: Is it helpful to know the numbers? DIANA: No, I don’t take any notice of that [prognosis] because everyone’s different … Like the kids’ father, he had a [large] cancer on his lung. He was told, [and] within two weeks he was dead … He just gave up. CARRIE:

So he [oncologist] was telling [Diana] her [diagnosis], but we were all

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there. He invited us all in … He took the time to really explain it and all that sort of stuff and what it was. We all wanted a time frame. INT.: So why did you want to [know the] time frame? CARRIE: [Crying] With our father, when he was diagnosed … we were told with Dad six months, and it was six weeks. So I think history tends to go, ‘Well if you give me longer, I’ll know it’s shorter. So if you tell me twelve months, I’m going to plan for about three.’ We just said, ‘How long?’ INT.: What did the doctor say in that instance? CARRIE: Six to twelve [months] … So you’ve got the six to twelve months and, I suppose, as the remaining parent, it hits you worse … At the moment, she is buying gifts for the little one for me to give out in years to come … So she’s planning all this for when she goes because she wants [her granddaughter] to have stuff from Nanny. For both Diana and Carrie, their previous experiences with cancer demanded different things of them in the current moment, as the meanings of the past were repatterned in the present, producing multiple iterations of the same (prognostic) event. As illustrated across the dyads, affective orientations towards cancer were achieved interactively – across bodies past, present and future – rather than individually within any particular moment. What the event of cancer demands across people, in a relational and temporal context, is thus a more accurate depiction than any individual’s experience of cancer in any given moment. This includes those presently absent, such as the father who haunts Diana and Carrie’s experience of cancer. Yet the father’s presence is ambivalent, with the meaning of his death offering different lessons for different subjects at different times: either to prepare for death within the hypothesised time frame or to resist the prediction. We thus see an assemblage of spectres – of the cancer itself, of family members and of omnipresent cultural expectations – each exceeding temporal and relational containment yet simultaneously contributing to the ongoing negotiation of the meaning of living-with cancer across bodies, time and space.

Discussion In this chapter we have sought to explore the elusiveness of the present in cancer, the illusory nature of discrete individuality, the production of estrangement and temporal haunting. We approached the scene of cancer from the in-between (Steinberg, 2015) – the interstices of bodies, selves, materiality, affectivity and temporality – to illustrate how cancer is made by and through multiple realities, temporal registers and bodies, not all of whom (presently) embody cancer. Drawing on some of the dis/continuities that emerged across our participants’ accounts, we reveal the much greater porosity of borders between things, particularly past, present and future, than is typically assumed within the ‘survivorship’ milieu (cf. Feuerstein, 2007). Moreover, we assemble a range of concepts with which to construct a better understanding of the phenomenology of living-with cancer as more than an individualised biophysical and

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psychosocial experience and instead as a temporally and relationally entangled process of becoming. There are thus several important contributions to be gained from the study of cancer specifically, and for the study of social life more broadly. First, these dyadic narrations of the hauntings of living-with cancer speak to the spectral aspects of living, or to the ‘hauntology’ of existence (Derrida, 1994). Cancer unsettles many of the borders between things: who is affected by it and ‘survives’ it; the impossibility of its relegation to the past and its constant colonisation of the future; and its inadequate containment in any given moment. In this way, livingwith cancer reveals the intra-activity of relationality and temporality; that is, it makes obvious the tensions that arise in the (otherwise seemingly smooth) movement across bodies, things, time and space that underpins daily social existence. The dynamics of contingency, ambivalence, contradiction, liminality and limbo – which are variously elicited in relation to a range of others both absent and present – become acute in living-with cancer, even though they are not exclusive to it. Cancer crystallises what is already (murkily there) in the background of daily living, bringing it to the fore. Old figures, primordial preoccupations or ghosts of ‘times gone by’, (re-)emerge in the face of cancer, vivid in contrast to their submergence in the ordinarily uninterrupted rhythms of (cancer-free) everyday life (Jain, 2007). In cancer, the medical programme of diagnosis and then prognosis makes time explicitly precarious, and in doing so makes evident the ‘iterative repatterning’ (Barad, 2014, p. 169) of past, present and future. As Jain describes it, ‘living in prognosis, then, is about living in the folds of various representations of time’ (2007, p. 80). Acute illness rethreads time in its challenge to linearity and the orderliness of time, where the future acts as a container for the present (Jain, 2007). As illustrated in our analysis in this chapter, cancer unravels the logics underpinning the presumed linearity of time, troubling ideas around ‘living in the moment’ – despite their cultural traction and valorisation – and rendering the present elusive. Yet similar negotiations of past and future can be observed across a range of social contexts – in ‘making memories’ with children (e.g., Tessler & Nelson, 1994), in ‘securing the future’ amid economic precarity (e.g., Dupuis & Thorns, 1998) and in ‘living in the moment’ as an existential retreat from the time pressures that pervade life in advanced capitalism (e.g., Langer, 1989; Rinpoche, 2012). The relational ontology that we employ throughout this book emphasises the intra-activity of selves and ‘others’, bodies and things, including particular ways of knowing and bodies of expertise. Importantly, in the case of cancer this includes the biomedical sphere (e.g., Burri & Dumit, 2007). Clinical knowledge of prognostic estimates, of ‘time left’, likely futures and the reasonable limits of hope, are deeply implicated in the unsettlings of cancer (see also Brown, 2015). Prognostic certainty becomes an apparition – elusive, unsettling, yet spectrally present. As the dyadic accounts show, such attempts at prediction via prognosis both produce and fail to (re)produce an order of things, offering a paradox in the present, envisioning the now based on a speculative future, which is affectively potent and relationally significant (feared, hoped for, resisted, encouraged) yet ontologically questionable. Biomedical prediction becomes part of the assemblage

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of living-with cancer, occupying a prominent day-to-day presence yet contributing to cancer’s unsettlings. These relational and temporal dynamics reveal those with cancer (and indeed, those who care for them) as (variously/partially/ temporally) exiled subjects: expelled from the (predisease) past, precluded from the (disease-free) future and suspended within a present devoid of its iterative repatterning across nonlinear time. As illustrated in the accounts presented in this chapter, living-with cancer produced estrangement – a movement across ways of being that are constantly renegotiated amidst the rethreading of time in the ongoing iterative process of becoming. The mechanisms of estrangement outlined here show how the temporal and relational entanglements in cancer survivorship become key sites of dissonance and normative regulation. The dialectical entanglement–estrangement relation, which emerges from the enmeshment of the temporal and affective dis/continuities of cancer, shows how those living-with cancer are positioned relative to pervasive cultural assumptions around how living-with cancer should be done, lived and felt. What is expected of subjects-of-cancer is deeply inflected by the widespread cultural assumptions of discrete individuality, interrelatedness (as opposed to intra-active becomings) and smooth temporality which our analysis has attempted to unsettle. In this chapter, we have focussed on the temporal dis/locations and dis/continuities that are made to matter in the case of living-with cancer, paying attention to the affective relations that shape what can and cannot be done, imagined and felt, and how these ripple across various others, bodies, spaces and times. Yet the unsettlings that cancer makes apparent may, in fact, serve as a bellwether for the temporal and relational entanglements that underpin much of the phenomenology of everyday life for everybody. In this sense, cancer’s spectres may serve as a wraithlike vision into the temporal and affective entanglements of social life in general.

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5 COLLECTIVE EMOTIONS, AFFECTIVE RELATIONS

At this point in the book it will have become clear that we are focussed on fully dismantling the prevailing paradigm of cancer survivorship (see also Breaden, 1997; Feuerstein, 2007; Haylock, 2010; Sontag, 2001). Where others have examined survivorship in relation to specific aspects of individual experience, such as ageing (e.g., Sinding & Gray, 2005), chronicity (e.g., Tritter & Calnan, 2002) and gender (e.g., Powroznik, Stepanikova, & Cook, 2018), we use a multiperspectival approach that apprehends its multidimensional co-constitution through embodied materiality, intersubjective relations and normative cultural expectations. While Chapter 4 examined the temporal entanglements between people living-with cancer and their close relational others, in this chapter we complement this focus to show how emotions, or affects, operate relationally – between bodies, subjects, discourses and practices. While social scientists have emphasised the diverse meanings of illness (e.g., Domínguez & Sapiña, 2020) and the complexity and collectivities of emotion (e.g., Iagulli, 2019; Patulny et al., 2019), it is surprising how often emotions continue to be viewed in very personalised, individualised ways (Broom & Tovey, 2007). What we want to unpack in this chapter is how the emotions of cancer are deeply intertwined with circulating beliefs, cultural desires and norms (Broom, Broom, & Kirby, 2014; Broom, Chittem, Bowden, Muppavaram, & Rajappa, 2017; Broom & Doron, 2013; Broom et al., 2019). Cancer survivorship, we will argue, incorporates a range of material, discursive and affective elements (Broom et al., 2019) and, importantly for this chapter, represents a form of sociality that is deeply infused with emotion and forms of morality that give rise to patterns of recognition and relational misrecognition (Bell, 2010, 2012, 2013; Bell & Ristovski-Slijepcevic, 2013; Frank, 2003; Fraser, 1998; Jain, 2007). As the previous chapters illustrate, survival in cancer is often misrecognised as an individual triumph; as the product of one’s determination and tenacity, which is reflective of

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a personal trait or quality; as equally available and/or equitable in terms of who survives; or as something ‘I’, rather than ‘we’, do (Segal, 2012; Steinberg, 2015). This chapter analyses and critiques the affective consequences of the tendency to conceptualise patients, persons and emotion in disembedded, individualised terms (cf. McKenzie, 2002). This individualising tendency is reflected across many spheres of scholarship, including cancer epidemiology and the emphasis on individual lifestyle ‘risk factors’ (e.g., Broom & Doron, 2013; Danaei et al., 2005), biomarkers and personalised medicine (e.g., Collins & Varmus, 2015), self-health discourse (Broom et al., 2014; Mead, Thurston, & Bloyce, 2020) and psychological models of survivorship (e.g., Kerr, Hill, & Till, 2018; Park, Edmondson, Fenster, & Blank, 2008), as well as in the broader culture of cancer awareness and activism (e.g., Broom et al., 2019; Klawiter, 1999; Steinberg, 2015; Vicari & Cappai, 2016). In contrast, and mobilising recent work in the social and cultural study of emotion and affect (e.g., Ahmed, 2004a, 2004b; Steinberg, 2015; Wetherell, 2012), we seek to shift the focus to the push and pull of different affective exchanges in and around cancer survivorship, to challenge the common assumption that emotions amount to individual, internal feelings that flow outwards towards an external material or discursive world. As shown in the data presented in this chapter, we place the emphasis on how emotions are produced through practices and how they circulate intersubjectively across bodies. To emphasise the relationality of emotion is to illustrate how collective feelings shape subjective experiences of cancer, which is also to consider how emotions such as hope and optimism might place normative pressure on individuals to deny their unsavoury feelings so that they may triumph over their disease (Broom et al., 2019). Following Fox (2015), we focus not on what emotions are but rather on what they do. By examining the affective exchanges between bodies, discourses, subjects and objects, we seek to show how persons – collectively and relationally – constitute, and are constituted by, cancer survivorship (Sandén, Nilsson, Thulesius, Hägglund, & Harrysson, 2019). In order to do this, it is useful to explore some of the pertinent conceptual work across moral and affective economies (e.g., Booth, 1994; Chattoo & Ahmad, 2008; d’Aoust, 2017; Sayer, 2000, 2007) which articulates the collective composition of survivorship.

Affect, Normativity and Surviving-with Cancer As we well know, cancer elicits many different emotions: hope, hopelessness, optimism, dread, desire and resignation, among many others (DiFonzo, Robinson, Suls, & Rini, 2012; Kaiser, 2008; McKenzie & Crouch, 2004). But it is worth considering the disparate origins of such emotions, and how they resonate and dissipate across and between multiple subjects, surfaces and sites. The circulation of fear is a useful example. While fear seems almost self-evidently to pervade cancer (e.g., fear of death, separation from family and friends, bodily decay, pain and suffering; see Caswell & O’Connor, 2019; Sarizadeh, Mozaffari, & Boogar, 2018; Wang & Wei, 2020), it often circulates in diffuse ways (McKenzie & Crouch, 2004). As demonstrated in our

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participants’ accounts, fear is murky and complex – articulable at some points and unspeakable at others – but always the product of collective effort (see Tudor, 2003, for a discussion of collective fear). Pertinent to this question of where emotions reside, or indeed emerge from, Sara Ahmed discusses the circulation of emotion as an ‘affective economy’ in order to demonstrate the flows of emotion beyond individual subjects or objects. Instead, the idea of affective economies shows that emotions do not positively inhabit any-body as well as any-thing, meaning that ‘the subject’ is simply one nodal point in the economy, rather than its origin and destination. This is extremely important: it suggests that the sideways and backward movement of emotions … is not contained within the contours of a subject. (Ahmed, 2004a, p. 121) Just as emotions do not arise from and end at individual subjects, they are also not restricted to particular moments: feelings slip between the present and the past, all the while adhering unevenly to different levels of signification in what Ahmed (2004a, p. 120) calls the rippling effect of emotions, which ‘move sideways (through “sticky” associations between signs, figures and objects) as well as backward (repression always leaves its trace in the present – hence “what sticks” is also bound up with the “absent presence” of historicity)’. In the case of cancer survivorship, feelings of dread, hope, resignation and so forth also ‘ripple’ across subjects, bound up with the ‘absent presence’ of our inevitable mortality, which remains shrouded in persistent death taboos. Such feelings do not inhabit ‘the cancer’ or even individual people but rather are produced across a wide range of subjects, discourses and affective practices. As a result, what initially may appear as the internal lifeworld of the person is revealed to be relational. The feelings-of-cancer move through physical, psychological, epistemological, clinical, cultural, economic, political and moral domains (e.g., Steinberg, 2015). While the emotional lifeworlds of people living-with cancer have been rigorously explored by social scientists for their part in identity work (e.g., Mathieson & Stam, 1995), biographical narration (e.g., Reeve, Lloyd-Williams, Payne, & Dowrick, 2010) and moral practice (Frank, 2003), far less attention has been paid to the affective collectives that come to constitute cancer survivorship. Given that ‘cancer survivorship’ has undergone considerable expansion as a cultural discourse, social practice and model of care over the last decade, fundamentally shaping a much wider set of relations of illness and care, it thus demands renewed attention and critique. Our focus on relationality – in this chapter and throughout the book – is not intended to diminish the salience of the person, nor their story of illness and affliction, but rather to highlight how affective practices are enacted across a wide variety of interactions, performances, scenes and events (Wetherell, 2012, 2015). As Margaret Wetherell points out, these include nebulous, subtle, ambivalent and contradictory emotions such as ‘reluctant optimism, intense indifference or enjoyable melancholy’ (2012, p. 3). In the case of those living-with cancer, survivorship invokes normative cultural guideposts that stretch subjects in different directions. These include such things as the desire for the here and now; determination to ensure

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a future; disgust with others’ expectation to persevere; the desire to prevail for the sake of others; the will to survive; the desire to face death and confront mortality; and the expectation of remaining positive (Steinberg, 2015; Waskul and Van der Riet, 2002). As Steinberg (2015) notes, these tensions emerge within a context of convergence between medicine, morality and popular iconography of the cancer culture industry, all of which tend to privilege what Segal (2012) has termed ‘cancer triumphalism’ – those narratives of cancer survivorship that celebrate positivity, strength, bravery, perseverance and so on – to the exclusion of the many possible alternative narratives. This resonates with Lauren Berlant’s work on cruel optimism, which she articulates as a set of relations in which ‘the object/scene that ignites a sense of possibility actually makes it impossible to attain the expansive transformation for which a person or a people risks striving’ (2011, p. 2). In the case of survivorship, the promises afforded by dominant survivorship discourses – namely, that by adhering to the normative narratives of positivity and optimism, one may enhance one’s chances of surviving – are sometimes sustaining but are more likely to offer cruel comfort in their incapacity to guarantee a future without cancer. Layered over these affective dimensions are cancer’s moral and normative discontents (Willig, 2011). Rather than moral sentiments associated with ‘feeling for’ or ‘feeling with’ others (Ahmed, 2004a; Smith, 1996), we turn to Andrew Sayer’s (2000, 2007) work on moral economy (see also Booth, 1994; Chattoo & Ahmad, 2008; d’Aoust, 2017) to highlight the way emotions operate as part of the architecture of normative, or ‘naturalised’, sociomaterial practices, including practices of survivorship. For example, a wide range of logics – or in Sayer’s terms, naturalised assumptions – might be interrogated for their normative antecedents. Why should one always seek to reduce disease? Why is opting out (of a potentially efficacious treatment) not the right course of action? Is medical futility always ‘bad news’, and is this the same to everyone? The legitimacy of particular responses (‘of course more time is better’; ‘good subjects/citizens must try to live’) is part of the moral imperative of survivorship that infuses both the cultural imaginary and the lived experience of cancer. Like any set of social relations, then, the sociality of survivorship ‘has a constitutive moral dimension, inasmuch as actors have to have some idea of their responsibilities, entitlements or rights, [and] how they are supposed to behave’ (Sayer, 2007, p. 261). By focusing on the interconnectedness of the affective and moral relations that operate around cancer survivorship, we examine not only how survivors are supposed to behave but also the emotions they are supposed to feel. This dynamic, more broadly, is captured by Steven Hitlin and Stephen Vaisey in their article on the ‘new sociology of morality’ – in which they consider the moral importance of narratives, identities, institutions, symbolic boundaries and cognitive schemas – whereby morality is ‘more than helping or harming others; it encompasses any way that individuals or social groups understand which behaviors are better than others, which goals are the most worthy, and what people should believe, feel, and do’ (2013, p. 55; see also Smith, 2003). Dominant cultural imperatives around what people living-with cancer should feel, and should do, inject an additional moral currency within the affective economy of cancer survivorship.

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As we will show in the interview material, the sociocultural, or symbolic, domain leaves traces, intensifying the presence of some feelings and the absence of others. This produces alignments and misalignments between lived bodies and subjects and normative discourses and subjectivities (Ahmed, 2004a, 2004b). For example, in the well-worn trope that ‘we’re all in this together’, we see an intensification of the collective (we), a unification of experience as singular (this) and alignment (we/this/together). Yet this implicit emphasis on collectivism and unification as coherent masks the complexity, tensions and contradictions therein (Broom et al., 2017; Kenny, Broom, Kirby, Wyld, & Lwin, 2017; MacArtney, Broom, Kirby, Good, & Wootton, 2017). As Ahmed argues, emotions work in this way ‘by sticking figures together (adherence); a sticking that creates the very effect of a collective (coherence)’ (2004a, p. 119). Yet what sticks, coheres and successfully binds? And what/who slips away, doesn’t adhere or fails to cohere? What forms of estrangement (Steinberg, 2015), alienation (Saillant, 1990) or cruelty (Berlant, 2011) emerge? In the context of cancer survivorship, as we show in this chapter, certain feelings bind but others divide, intensifying some of the feelings that cancer elicits while devaluing others (Segal, 2012). Here we investigate the affective and moral nexus to better understand the sociality of cancer survivorship as a deeply relational, social and collective practice.

Survival-in-Relation In terms of fieldwork, this chapter draws on interviews conducted from 2015 to 2017 with eighty individuals living with cancer in Australia, and doesn’t include carers (for carer accounts, see Chapter 4). The analysis in this chapter draws on participant narratives that explicate the temporal lens of Chapter 3 and the entangled lens of Chapter 4. Across this set of stories of living with disease, the passage of emotion (Fox, 2015) across things (cancer, treatments, side effects), subjects (self, partner, child) and collectives (families, friends, doctors, ‘people’) became evident in a range of ways. While this sometimes produced affective alignment with normative cultural orientations towards cancer survivorship, misalignments and tensions also emerged, with people simultaneously pulled in different directions. In both instances, though, emotions were always articulated in relation – to ‘the cancer’ itself; to partners, families and friends; to fellow ‘survivors’; to strangers; or to generalised ‘others’. It was out of this collective circulation of emotion that affective/moral tensions emerged and became apparent.

The Circulation and Interactivity of Emotion Within the social sciences, a considerable body of work has demonstrated how illness and affliction are regularly ‘treated’ in highly personalised, individualised terms (Scambler, 2002; see also Petersen & Lupton, 1996), and there is only limited work on intersubjective dynamics in the context of cancer (e.g., Hvidt, 2017). Such things as the drive to survive, hopelessness, tenacity and shame are

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often seen as imbuing the person rather than as the product of collective effort, circulation and exchange (Ahmed, 2004a, 2004b). In the everyday dynamics of living with cancer, emotions are revealed as entangled with pressures and desires such as the pressure to achieve/be something or the desire to continue to be/exist (e.g., Inhestern & Bergelt, 2018). While participants articulated such pressures and desires in language that often reproduced individual boundedness (me/them, mine/theirs, myself/others), these dualisms are nonetheless useful for illuminating the relations between subjects, and what emotions do in such exchanges. Our starting point for the current analysis of participant narratives is the mutual responsiveness of emotion and its interconnectedness with forms of normativity around cancer. One instance where this interconnectedness was widely particularly apparent was in participants’ stories of relating news of a cancer diagnosis to family and friends. Paul, who was diagnosed with a form of head/neck cancer in his fifties, recounted: I’m one of [many] kids so I had to talk to a couple of my siblings to tell them, and the first few times was really difficult, you’re just in tears and they’re in tears. My second older sister, I rang her, pardon me swearing, and I said, ‘I’ve got something to tell you. For fuck’s sake don’t cry.’ So we just had a bit of a talk. They were all good, all really positive. But the worst one was telling my mother. She just broke down and I probably spent two hours with her just trying to console her … It’s very difficult to manage because whatever they do has a direct impact on how you’re feeling at that time too. As soon as Mum broke down, then you’re in tears. Similarly, Brandon, who in his thirties and with a young family had been livingwith advanced sarcoma (a form and stage of cancer with an extremely poor clinical outlook) for four years, explained how emotion circulated among his social network: I’m not giving up, I’m at the realisation that this will take my life and I think I had like 200 [Facebook] comments and it took me an hour just to get through them. It was amazing … I don’t need everyone behind me pushing me, but now that everyone is, it just makes it a bit easier knowing that so many people are there pushing for you and supporting you … This is what I get emotional about, is the emotion people show to me. Both Paul’s and Brandon’s accounts illustrate how feelings around cancer emerge in interaction with other (and others’) feelings – between siblings’ tears, mothers’ fears and Facebook comments – and how the interactivity of emotion emerges from this broader collective. Emotional exchanges not only intensified feelings, they frequently shaped their content, too. Ken – who after a long period of unexplained symptoms was

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diagnosed with an aggressive form of colorectal cancer in his fifties – described two related moments where the interactivity of feeling was particularly evident: I got home and I … said, ‘Malignant is cancer?’ and [my wife] said, ‘Yes’, and I said, ‘Okay, that’s fine. I’ll ring mum and dad and tell them’ … I was good until I said ‘cancer’. As soon as I mentioned the word ‘cancer’, I fell apart. I bawled my eyes out on the phone … She’s [Mum] basically just said, ‘What have you got to tell me?’ … I was kind of holding it together, holding it together, feeling that I could do it, tell her, and then when she said, ‘Get over it’, it was like, ‘Bloody hell!’ It was a total change. I got off the phone from her and went, ‘Okay, that’s where we’ve got to go.’ About the fourth night [of treatment] I went up to the hospital … I was going in to get the radiation, and a little girl came out and she was about ten, and she came out with a big smile on her face and said, ‘How are you tonight, sir?’ I said, ‘I’m very good. How are you?’ and she said, ‘Really good. I’ve just put another sticker on. Three more to go’, beaming smile, and off she went. I slapped the back of my head like, ‘What the hell am I worried about? I’m fifty and that’s a ten-year-old walking out.’ Pretty much from that day on it was like, ‘Okay, we’ll deal with this’ … It was really one of those moments that you just go, ‘Suck it up and get over it. If that’s what a ten-year-old kid can do, that is the attitude you’ve got to have.’ Ken’s reflections illustrate a number of interrelated points. First, that the signifier ‘cancer’ is itself highly affecting – as Ken professes, he could maintain the appearance of emotional balance until he got to the word ‘cancer’, and then he ‘fell apart’. Ken’s emotional experience was deeply imbricated with the emotional experiences of others – family, friends, even strangers. First, his mother’s stoicism and directive to ‘get over it’ defined his future trajectory or, as he put it, created a path to where he ‘just had to go’. The upbeat optimism-in-spite-of-everything that Ken experienced as radiating from the little girl who was also undergoing cancer treatment caused a similar affective reorientation within him. Such moments in the participants’ stories illustrate how the affective experience of cancer survivorship does not emanate from the embodied experience of cancer within, but rather emerges from dynamic interactions in a world of others (Ahmed, 2004a, 2006; see also McManus, 2011). However, as we explore in the following section, the affective exchange does not just express the intensity of an emotional tie (as with a loved one); it also carries with it important normative injunctions that shape not only what one does feel but what one should feel as well.

Accumulation and Devaluation: Surviving Positively, or Silently Not all the emotions that circulate around cancer are equally valued or even deemed valid (Olson, 2015; Strauss, Kitt-Lewis, & Amory, 2019; Tolhurst, Carey, Weicht, & Kingston, 2019). Indeed, one aspect of the circulation of emotion is the

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accumulation of affective value around particular (normative) emotions and the devaluation of others that deviate from those norms. The interdependence and mutuality of the emotional and moral relations of survivorship emerged early in the interviews, particularly around the desire or duty to remain positive and around dynamics of obligation. While our focus on positivity and obligation is not new within studies of the oncological field (e.g., see Bell, 2012; Ehrenreich, 2001, 2009; McCreaddie, Payne, & Froggatt, 2010), and considerable scholarship has focused on the coercive forces of survival and perseverance (e.g., Segal, 2012; Steinberg, 2015; Youll & Meekosha, 2013), here we pay attention to how these culturally dominant emotions accumulate affective value relationally. As Ahmed (2004a, p. 120) observes: ‘Affect does not reside positively in the sign or commodity, but is produced only as an effect of its circulation … The more they circulate, the more affective they become, and the more they appear to “contain” affect.’ Such value gathers around the exchange of positivity, care, and perseverance but leaves other emotions comparably devalued – as unable to be exchanged (e.g., dread, hopelessness, melancholia). A number of participants described the ways in which they benefitted from collective affect, or a communal sense of feeling-with, especially within the clinic. Maud was a mother and grandmother who, as a single parent, had worked long hours in manual jobs for decades to support her family. Now in her seventies, she had been diagnosed with terminal lung cancer. Throughout her interview, she took care to articulate various things for which she was grateful. When asked what living with cancer was like for her, she explained: Well, it’s not easy. But I tell you what, when you go for chemo and all the people at the chemo … they all contribute to my peace of mind because they are beautiful people, and all the people that have chemo, we all talk about our problems and all that. When you sit there, you’re not the only one. Every single patient that goes there has the same problem as you have. They all have cancer. Some will live, a lot will die. But we talk to each other. Here we see the emergence of relational solidarity between (co-)subjects of cancer and treatment, whose experiences align with the particular atmosphere on the ward. But we must also ask: what happens to those whose emotions do not align, to those whose affective experience does not circulate freely, or is devalued, marginalised or denied? Within this set of interviews, there was a clear sense of the moralities underpinning treatment: selflessness, suffering, stoicism and the duty (or desire) to endure. Cancer evoked particular feelings, but also particular courses of action, which were deemed ‘right’, or sometimes the ‘only’ course. Yet consensus over emotion and action masked a greater degree of ambivalence with respect to the feelings of survival, with a number of participants couching this continued survival as being for the sake of another. For example, Natasha, who was diagnosed with

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incurable brain cancer in her late fifties, discussed her treatment decisions in relation to her children’s desires. Despite having ‘strong feelings’ against undergoing chemotherapy or radiation, and faced with only a few months to live, she saw ‘no choice’ but to pursue treatment: ‘My son said to me since, “If you’d refused the radiation and chemo I probably would never have talked to you again.”’ For Natasha, although cytotoxic cancer treatment was ‘against everything I believed in’, it was nonetheless necessary in relational terms. Josephine, who was in her sixties and had been living-with breast cancer for seventeen years, similarly talked about the need to ‘keep going’ for others, namely for the sake of her husband: Well, the only other option is suicide, really. What am I going to do? Just lie on the bed all day and not eat? … You’ve got to keep going. I’ve got [my husband] there to keep pushing me, and he does push in a kind way. He’s absolutely wonderful, and if it wasn’t for him, I probably wouldn’t bother. I probably would just commit suicide because, personally, I don’t think it’s worth it, but I’ve got to do it for him. In these cases, cancer patient identity is, in part, formed through norms ( Jain, 2013; Segal, 2012; Steinberg, 2015) that preclude choices other than the therapeutic pursuit of treatment and cure, even though the patients themselves may have ‘strong feelings’ to the contrary or prefer to opt out of continued survival. The notion of affective practices is useful here in understanding the relationship between feeling and action, and the tensions that emerge across affective scenes and events (Wetherell, 2012). In each of these cases, enduring treatment, even surviving, is felt for an other. Across the interviews, there was broad agreement about acceptable courses of action. There was really only one choice: undergoing treatment and continuing to survive. However, beneath this apparent consensus, we suggest, lies a subtle coercion, individualisation of disease and dynamic of estrangement, by virtue of its silencing of the full range of possibility (Segal, 2012). Although participants recounted these affective conflicts within the interview setting, they were also aware that many of these feelings were unspeakable in everyday settings – as things that ‘you can’t say’ – including expressing taboo emotions such as loss, grief, despair, sorrow, ‘being down’ or wishing to cease treatment and capitulate or ‘escape’. Liam, a young man in his thirties who had worked hard throughout his ‘rough’ treatment for colorectal cancer to maintain his health, fitness and emotional strength, reflected on the possibility of escaping the treatment treadmill: If the day comes that [the doctors] say, ‘That’s it … There’s nothing more we can do’, and I can say, ‘Great. You fill this form out and I can take all my super[annuation] money and go and get a camper van and just go and drive around Australia and just escape from it all.’ I don’t ever tell anyone that, because I don’t ever talk about that sort of thing with anyone … It’s one of those things that people probably get a little bit upset with you and say, ‘You’re being negative’ and ‘Don’t think like that.’

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Other participants described a similar inexpressibility of emotion using a range of metaphors, including ‘putting it in a jar’ and ‘locking your emotions away’. Normative prohibitions against voicing, or even feeling, negative emotions were widely expressed across the interviews, as were the resulting silences and repressions. Negative emotions were broadly considered taboo – as unspeakable or something to be hidden from view. In this way, sorrow, despair, hopelessness, resignation, capitulation and so on were concealed, rendered inaccessible for most of the participants. Of note, we are not proposing the substitution of one form of normativity (which valorises positivity and optimism) with another (celebrating ‘wrong’ emotions and ‘bad’ patients). Rather, in line with Segal (2012, p. 307), we wish to highlight the subtle coerciveness of the ‘narrative hegemony of the positive [cancer] story’, as well as its potential antidote in the expression of a wider variety of lived and felt experiences of cancer. Finally, prohibitions around the expression of negative emotions were brought back to surviving itself, with adherence to the dominant (more positive or determined) affective orientation seen as central to survivorship. For example, Cole, who had experienced significant lethargy prior to his diagnosis of lung cancer in his forties and had subsequently been living-with cancer for over a decade, explained: It’s hard, but you’ve got to get on with it. If you don’t get on with it you’re not going to survive. If I have a down day, my wife or one of my kids will say, ‘What’s up? Come on, get going.’ There’s no such thing as a down day in our house. What is shown here is the power of the emotions surrounding the afflicted subject, and the silencing and devaluing of particular affective expressions and courses of action that deviate from normative visions of the cancer patient, the survivor and selfhood. Various scholars have described these silences as reflecting dynamics of estrangement or alienation from the collective pressure to stay positive, fight the good fight and, ultimately, triumph over cancer (see, Saillant, 1990; Segal, 2012; Steinberg, 2015). This estrangement is not without consequences, though. As we show in the following, it contributes to suffering – for those who are living with cancer in an embodied sense and for those for whom it merely passes by more closely than they might desire.

Disclosure, Abjection, (In)Authenticity While the emotions of cancer survivorship are collectively produced and accumulate value through their circulation and exchange, some emotions, as we have shown, are devalued and concealed, withheld and made unspeakable. Across the interviews, participants expressed a range of ways in which this devaluation entailed a variety of problematic experiences. It was clear that devaluation played a distancing role within social relations and imposed various forms of suffering on the person living with

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disease. This was often situated within broader taboos and dynamics of abjection in relation to bodily disintegration and, ultimately, death (Kristeva, 1982). Participants recounted instances of friends recoiling in relation to their diagnosis or prognosis (or to the cancer itself ), avoiding discussing the topic or avoiding them, often resulting in the loss of previously important friendships. This became particularly apparent as participants reflected on how their broader social networks responded to the news of their cancer. Ken, who was deeply affected by his encounter with the young girl receiving radiation therapy, explained: I had 150 friends before this and now I can count them on one hand, the ones that I’ve seen since then … [They] would rather not know about it. [They are] afraid of losing a friend … I think a lot of them are like, ‘If I don’t get too close, if I pull back and there’s a distance, it won’t affect me that much.’ For some participants, like Ken, this withdrawal occurred soon after disclosing a cancer diagnosis and was interpreted as self-protective, as if by preemptively withdrawing from social connection with the person with cancer, those left behind can make the eventual (presumed) death easier to endure. For others, breaking bad news, repeated over time, prompted them to ‘think twice’ about disclosing their cancer. As recounted by David, who was diagnosed with neuroendocrine cancer in his forties: At first, after it, I was quite open about talking to it with other people … But I’ve learned to actually not tell people, because when you tell them they become that scared in themselves and they treat you differently to someone else. They don’t know what to feel … So I basically don’t say anything until I get to know people quite well. Here, cancer inserts an unwelcome element into social exchange: if disclosed, it becomes an inescapable aspect of one’s interactions, which itself affects certain affects – for example, fear, uncertainty, distance and silence. For a number of participants – like Liam, who in his thirties considered himself to have a broad and engaged network of friends and colleagues – this led to social withdrawal: INT.: LIAM:

How have family and friends responded to this? Overwhelmingly terribly … At the start we had a lot of people go, ‘If you need anything let me know.’ But I’m down now to a very small core group of people … The people that have disappeared now, I don’t think they’ve just disappeared because of me. They would probably be the same with anyone.

Liam’s observations reflect a decentring of the individual emotional subject to reveal the materiality of cancer itself as an affecting object above and beyond the person in whom it is embodied. Here the cancer acts in a way that exceeds its

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manifestation within the body and lifeworld of Liam himself. This nicely illustrates Ahmed’s (2004a) point that emotions have their origins, and are experienced, in relation not only to oneself and others but also in relation to objects. In this sense, we can regard cancer as an affective object to which emotions become attached or ‘stick’ (see also Fox, 2015). Participants described the interactivity of emotion in a way that was always multidirectional – the backwards, forwards and sidewise movement between bodies and things both present and absent. Yet within this circulation, the fears, prohibitions and silences that cancer entailed were often felt as isolating and alienating. This was poignantly articulated by Natasha. Her own shock at being diagnosed with an aggressive brain cancer initially mirrored the shock of those around her. However, over time, the initial shock and resulting attention had dissipated to become forms of silence, which Natasha found difficult: INT.:

How has everyone around you reacted or responded to this? Everybody’s around you at the beginning. You’re overwhelmed by people’s kindness and goodness, and everyone’s over you like a rash. It’s almost too overwhelming, and then I’ve just noticed people are almost uncomfortable that I’m still here, I think [laughter] … They don’t quite know how to be with me … I’ve noticed it’s almost like the elephant in the room. A lot of people don’t want to talk about it or just pretend it’s not happening. So that’s a weird thing to deal with as well … My stepdad and that says, ‘You’ll be fine. You’ll live another thirty years’, and I go, ‘Well, no, I won’t. That’s just ridiculous. I won’t.’ INT.: Why do you think they’re saying things like that? NATASHA: Because the thought of losing me is harder, I suppose. We’ll just pretend that’s not happening. It’s easier [laughter] … I prefer the reality of it all, really. ‘Okay, this is going to happen. Let’s deal with it.’ It’s just sad, really. NATASHA:

Such silences imposed additional sorrow and burden on people living with cancer – one they often had to bear alone. Upholding such prohibitions was laborious, as participants endeavoured to avoid violating the normative silences. Matt was a husband and father of two, who, after a long period of remission from a previous unrelated cancer, was diagnosed with brain cancer in his early fifties. He explained: You’ve got to be very, very careful not to slip, because something might happen and you might be talking to someone and they’ll say, ‘What do you think of that?’ You might just say, ‘I don’t care. I won’t be here’ … It can freak people out sometimes. It’s also like some people think you’ve admitted that you’re already gone. This excerpt reveals the lived experience of speaking, or being, ‘against’ the normative hope for recovery and cure, or failing to uphold ‘cancer triumphalism’

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(Segal, 2012). Steinberg (2015, p. 118) has characterised the ‘good patient’ as one who ‘embodies distinctively neoliberal body-affective imperatives – imperatives of will, affect and action’. Regardless of the pragmatism or ‘reality’ participants espoused, projecting anything outside of an energetic ‘will to live’ was equated with defeatism, failing to ‘fight’ and possibly a moral failing of the normative cancer survivor. Normative pressures to feel a certain way thus resulted in a dynamic of inauthenticity. As Liam observed: I really need to hold my tongue when people say, ‘You’re looking well’, things like that, or ‘Your hair’s growing back’, or stuff like that. Especially when people say, ‘You’re looking well’, you feel like saying, ‘You should have been here last week, when I was on the lounge with a pillow over my head screaming because it hurt so much.’ But you can’t. The disavowal, concealment and avoidance of particular feelings, and the inexpressibility of suffering-with cancer, resulted in considerable repression among participants and even a reassessment of their moral selfhood. Numerous participants assessed their reconfigured priorities in the wake of cancer as ‘selfish’, although, as Ken pointed out, ‘Selfish probably isn’t the right word, but that’s how it feels, if you know what I mean.’ Similarly, Karl ruminated: ‘I’m thinking, “Am I being selfish?” I know it’s [the cancer] affecting [my family]. I know it affects them. They’ve got to feel that. This is the one who raised me, these are the people who are going to bury me.’ These excerpts highlight the inaccessibility and inexpressibility of nonnormative emotions, relegating feelings of sorrow, suffering, melancholy and so on among those living with cancer to the realm of moral failing (as lacking in virtue). Nor is there room for affective ambivalence or subtlety, or the coexistence of seemingly positive and negative affects (e.g., reluctant optimism or enjoyable melancholy; see Wetherell, 2012). These forms of disavowal can be viewed as reflecting cancer culture more broadly, in which, as Steinberg posits, the modes of experience or affective stance (suffering, anger, resistance) that have no place in cancer’s popular imaginary constitute an imperativeinterpretive field infusing the terms of ‘survivorship’ and ‘better outcomes’ such that they can be so ambiguous, so painfully equivocal, and yet in the end, so definitively invoked. (2015, p. 136)

Discussion Expectations around how one feels (and should feel) when living with cancer have evolved, yet often invoke such sentiments as bravery, hope and positivity (Ehrenreich, 2001, 2009; Frank, 2003; Kaiser, 2008; Klawiter, 1999). Such expectations are inevitably normative: the ‘good’ cancer patient should, above all, show a will to live. As Steinberg (2015) notes, will becomes a particularly valued

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currency within what we have described in this chapter as the affective economy of cancer survivorship. The emotions and moralities of illness and care are revealing of power, and illustrate how survivorship can be deployed (and requested) as a moral commitment and potentially coercive cultural form (Sayer, 2007, p. 265). That is, our analysis in this chapter demonstrates how the collective expectation of survivors to survive – to continue to live, to endure and to flourish, despite the odds or regardless of suffering – imposes normative pressures and delimits the range of feelings that are deemed moral in and around cancer. Central here is the performativity of affect and the regulation of emotions. Across our eighty narratives, the dense flows of emotion between subject, others and objects revealed the material, discursive and social dimensions of cancer. Our findings also revealed affective disorientations among those living with cancer in their unspoken, though keenly felt, distance from normative optimism and action. In this way, we suggest that the concealment of nonnormative emotions results in a form of social suffering most adequately characterised as misrecognition. Misrecognition, according to Fraser (1998, p. 141), amounts to social injustice: ‘To be misrecognized, in my view, is not simply to be thought ill of, looked down on, or devalued in others’ conscious attitudes or mental beliefs. It is rather to be denied the status of a full partner in social interaction and prevented from participating as a peer in social life.’ Across the interviews, participants articulated dynamics of misrecognition, whereby various cultural silences around nonnormative or amoral feelings precluded full participation in social life and were experienced as disorienting (relationally and ontologically) and estranging from the dominant cultural portrayal of cancer survivorship. However, they did not necessarily offer the ‘hope of new directions’ that Ahmed (2006) has suggested such instances of disorientation can afford. Instead of giving space to (other/negative) emotions, this disorientation appeared to lead or redirect subjects towards a seemingly safer normative footing, aligned with and coproduced by the collective (see also Ahmed, 2006). It is here that performativity of emotions and intertwining of action and emotion are evident; as Ahmed (2004b) has pointed out, feelings reflect and rehearse associations that are already in place (e.g., will-time, hope-future, fight-prevail). It is worth pausing to consider the place of ‘positive’ emotions, and the extent to which cultural scripts around cancer and survivorship intersect with positivity. The range of ‘positive’ emotions articulated in interviews – determination, stoicism, not giving up and so on – all entailed a morally laden injunction to optimism (see McManus, 2011). Indeed, as Susan McManus (2011) notes: Problematic modes of hope (such as the appeal to hope-as-optimism) make demands upon the subject’s rationality, intentionality, emotions and even normative register, in which pessimism is constructed as a form of moral lack – or, in what might be the same thing differently phrased, as contributive to social maladaptation, depression, ill-health, and early death.

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The privileging of positivity as the affective orientation of cancer survivorship has significant implications for people living with cancer. This once again resonates with Berlant’s thesis of cruel optimism, whereby survivorship logics that appear sustaining and affirming for people with cancer and those around them can also be profoundly alienating to those excluded from their attainment. Feelings of another sort (dread, melancholia, resentment) are made to be the antithesis of the practice of survivorship, and indeed, anathema to the ‘good life’ (Berlant, 2011). The assumption is that being dutiful will result in what one deserves – in this case, not just a good life but a long life (Berlant, 2011). Most obviously, the inclination towards treatment, sustained until the very end of life, becomes positioned as the only reasonable or moral treatment trajectory, despite its often-debilitating consequences. The outcomes of such dynamics are evident, for example, in clinical interpretation of patients ‘hanging on’ (Khatcheressian, Harrington, Lyckholm, & Smith, 2008). Within the set of interviews we undertook with those living with cancer – the ‘patients’ – the ‘choice’ to continue treatment, to do something and, importantly, to feel positive about the course of action was revealed as masking the various forms of suffering that this treatment-as-a-foregone-conclusion often entailed. Paradoxically, the collective positivity (and the allure of hope/recovery) which emerged from the circulation and exchange of emotion also served as a mode of regulation, in turn contributing to the individualisation of cancer. This chapter offers some new insights into the affective and moral landscape of survivorship and its potential to collectivise normative feeling while individualising and marginalising nonnormative emotions. It has sought to present a careful critical investigation of the emotional contours of cancer in everyday life, to reveal survivorship practice as a normative assemblage with mixed effects. The emotions that pervade this assemblage actively produce, rather than arise from, the boundaries and differences that demarcate the spaces and alignments between persons, objects and discourses. Some emotions circulate more freely and accumulate more value than others, bringing into being the particular contours of the surfaces between individuals and collectives and precipitating various kinds of dis/orientation (Ahmed, 2004a) and dynamics of misrecognition (Fraser, 1998). By ‘treating’ the emotions around cancer survivorship this way, we have attempted to trace the exchanges that result in patterns of accumulation around certain (normative) emotions such as positivity, optimism and the pursuit of treatment and cure, and the devaluation of others, such as dread, despair and capitulation. That is, we have revealed the intertwining of emotion and normativity in the affective relations of survivorship, and the implications for therapeutic decision-making and the lived experience.

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6 ENCHANTMENT, ACCELERATION AND INNOVATION

Across the previous chapters, we have examined the unfolding embodied, temporally complex and relationally entangled nature of survivorship, as well as its normative implications and discontents. In this chapter, we explore how survivorship is situated within the political economy of therapeutic innovation and, in particular, how the practice of cancer survivorship is now deeply enmeshed with the transnational project of ‘precision medicine’ (Kerr, Hill, & Till, 2018; Nishi et al., 2016; Olson & Cook, 2018). With its origins in the successful completion of the Human Genome Project in 2003 (Hauskeller, Sturdy, & Tutton, 2013), precision medicine – also known as ‘personalised’ or ‘stratified’ medicine – mobilises advances in genomic and other technologies to determine an individual’s diagnosis or risk of disease and predict how they are likely to respond to treatment (Kent, 2017; Prainsack, 2017; Reardon, 2017). More than that, though, precision medicine has captured the collective imagination as a promising pathway towards individualised health care tailored to the specificities of each and every one of us. Importantly for our analysis of survivorship, precision medicine is now positioned as the latest, and most promising, ‘frontier’ in the search for cancer’s cure (Prasad, 2020). It also doubles down on the legacy of a biomedical focus on the individual (precise, targeted, personalised, individually tailored), which makes it an important area of analysis vis-à-vis our focus on the relational/collective dynamics of cancer. To date, precision medicine has gained its strongest foothold in the context of oncology, where the mobilisation of so-called ‘targeted therapies’ and immunotherapy drugs represents a dramatic ontological shift away from traditional organ-based tumour streams, such as breast cancer, lung cancer, or bowel cancer (Duffy, 2015; Sankar & Parker, 2016; Subbiah & Kurzrock, 2016). This has radically transformed the pursuit of therapeutic innovation and the design of clinical trials, as well as the practice of cancer care day-to-day (Ciardiello et al., 2014; Kensler et al., 2016; Lowy et al., 2016). Diagnostics, participation in experimental trials and treatment protocols are all shifting

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rapidly – sometimes not rapidly enough – across cancer ‘types’. At the same time, cancer types are often caught between new clinical designations organised around particular genetic mutations (for example, mutations in epidermal growth factor receptors that occur across subgroups of particular forms of cancer) and the organ-stream basis of enduring cultural understandings, fundraising efforts, cancer support groups and popular survival statistics. The emerging scene no longer aligns with traditional understandings of categories of malignancy and the associated therapeutic interventions. In addition to shifting understandings of disease itself, survival outcomes for some cancers (like lung cancer and melanoma) look nothing like they did even five years ago, at least for those who have access to targeted therapies (Aderhold et al., 2020; Yang, Yang, & Yang, 2020). Other cancers (like colorectal cancer) have seen little change, while still others (new mutation-specific subtypes) have insufficient precedents from which to derive meaningful statistics at all. As a result, the impact of the move towards precision medicine in oncology is not a straightforward story of biomedical triumph (Au, 2020; Au & da Silva, 2020). Instead, and as we will explore here, the nexus of precision and survivorship is a complex terrain, revealing elaborate (and at times destructive) connections between economic and cultural values, the circulation and accumulation of capital, professional desires and ambitions and enduring forms of normativity and taboo – all of which inflect health professionals’, patients’ and carers’ experiences of illness and care (Blasimme & Vayena, 2020). In this chapter, we begin to map some important considerations around innovation, practice and the lived experience at the (emerging) nexus between precision and survivorship.

The Promise of Precision The global enthusiasm for precision medicine across nations, governments, publics and markets is clear. For example, precision medicine has become a key component of Horizon 2020 (the EU Framework Programme for Research and Innovation) and the US National Institutes of Health’s All of Us Research Program (Duffy, 2015; Sankar & Parker, 2016). China has also announced a fifteen-year precision medicine program, with estimated funding of around US $9.2 billion (Cyranoski, 2016). In March 2018, the Australian Council of Learned Academies jumped on the pan-national precision medicine bandwagon, releasing a report on the future of precision medicine in Australia which stated: A national precision medicine initiative will enable the extension of core precision medicine technologies to areas such as agriculture, veterinary medicine, aquaculture, trauma prevention in contexts such as defence and sport, and have the potential to spawn novel biotechnology initiatives. (Williamson et al., 2018, p. 6) Enthusiasm for the potential of individualised molecular therapeutics seems to know no bounds, despite emerging concerns about its viability and value

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(Erikainen & Chan, 2019). Major questions are now being raised regarding the sharply rising costs of personalised oncology, with some targeted therapies costing in excess of US$100,000 per annum (e.g., American Society of Clinical Oncology, 2016; Experts in Chronic Myeloid Leukemia, 2013); whether new genomic knowledge is usable and productive in practice (e.g., Broom et al., 2016; Bucur et al., 2016; Khotskaya, Mills, & Mills Shaw, 2017); equitable access to new therapies (e.g., Horne et al., 2015); and, critically, overall value for patients and communities (e.g., Lupo et al., 2016; McGowan et al., 2014). The rise of precision medicine has, in effect, offered up a series of major ethical problems around value, cost and worth. Specifically, are the potential ‘solutions’ so costly that they introduce more problems than they solve at a system level? And is the unequal cost of the emergent solutions so prohibitive at a system level as to be counterproductive to overall health outcomes? While precision medicine in cancer care has attracted enormous funding, the sociological dimensions of precision oncology have not yet received sufficient critical attention (but see Day et al., 2017). Core issues that we will tease out through the perspectives of clinicians and patients in this chapter and Chapter 7 include the promised benefits of precision innovation (cf. Joyner & Paneth, 2019), the intersecting pressures of innovation and care, the (vested) professional interests in survivorship, and the affective dimensions that animate the constant push for innovation. Such considerations are central to questions about the actual benefits of precision and how are these being realised (often unequally) across different populations and communities (Bilkey et al., 2019). A key issue here is the ambiguity around whose interests motivate the ‘project of precision’, as well as whose interests it ultimately serves (Rushforth & Greenhalgh, 2020). In the following section, we seek to elevate some key social processes that we view as central to the evolving sociality of precision and that, when placed together, provide a new way of thinking about what drives this project, in all its twists and turns.

Enchantment and Acceleration towards Cure The first piece of the precision puzzle that spanned both our health professionals’ and patients’ perspectives was the enchanted character of precision innovation. Enchantment, we argue, is a complex, paradoxical social relation (see, for example, Bennett, 2001; Berman, 1981) that captures aspirations of refreshment, hope and faith as well as relations of change, investment and progress-towards-cure. But it also captures a murkier set of affective and material relations with productive and coercive potential. Kyla Schuller’s The Biopolitics of Feeling (2018) is instructive in understanding the contradictory implications of such collective sentiments. While collective feeling draws people together in affective alignment, she argues, sentimentalism also operates as its own moral philosophy, often harnessing feelings to particular economic ends. Sentimentalism thus represents the ‘transformation of feeling, relationality, and care into an asymmetrical dynamic – a market of feelings’ (Schuller, 2018, p. 34). In the project of precision medicine, enormous state and

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private investment has been leveraged (and has capitalised) on the collective sentiments of promise, hope and progress. Who this ultimately benefits, though, is as yet far from clear. How does enchantment apply to this context of precision oncology? As made visible in the stories of our participants in this chapter, the notion of enchantment may help us better understand the (often bitter) relationships between the (dogged) commitment to therapeutic innovation, professional ambitions (to discover, to heal) and enduring questions of meaning and value. Following Bennett (2001), we posit that enchantment animates important questions around predominant systems of ethics, shedding light on the tensions between the pursuit of cure and the provision of care in the clinic. Enchantment speaks to how new discoveries distract from age-old problems – for example, of affliction, grief and mortality – contributing to the affective relations that surround the transnational project of precision medicine in cancer care. The dynamics of enchantment are propelled forward by an enduring cultural orientation towards the future. The seeming advancement of innovation fuels hope and binds together a mix of actors (clinicians, patients, scientists) with a shared focus on the promise of the future and commitment to living/surviving in the present in the interim (see Chapters 1 and 4, and Blackman, 2020; Kenny et al., 2017). After years of no ‘great leap forward’ in cancer survival rates, and with the limits of cytotoxic cancer therapies becoming increasingly evident, the horizon for cancer has been somewhat bleak. In contrast, the possibility of ‘precision oncology’ is deeply enchanting. Coupled with the acceleration evident in the epoch of mutation discovery, precision imbues a sense of the ‘next big thing’ being just around the corner; patients just need to ‘hold on’ until the future (of innovation) arrives. This temporality also sustains, to an extent, the recruitment of financial capital for precision research and development, leveraging the promise of future return on speculative investment in the present. In the case of capital investment, the mere speculation produces profit/value, but for the patient this logic does not hold. The impression of accelerated therapeutic innovation has led to a reimagined future and has also fundamentally changed how oncology is practiced in the here and now. It has not only encouraged unprecedented forms of patient participation in the clinical trial machinery of innovation (see Chapter 7) but has also presented new challenges as clinicians navigate the rapidly changing terrain of precision cancer care. The dynamics of enchantment and acceleration have further muted other forms of questioning, such as: what constitutes valuable time? Can I ‘afford’ more time? Is more time even a ‘good thing’? Such considerations, in the end, are almost always not questions about time but rather fundamentally questions about value.

Cost, Value and Access Value remains a particularly thorny issue in the story of precision medicine thus far. While it has never been a straightforward notion in health (see Sloan, 1995), value has been a recurrent concern within the field of oncology for much of twentieth and now twenty-first centuries (Kang, Goodney, & Wong, 2016). Questions of cost and

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of value (of lives) remain crucial for the project of precision and, as illustrated later in this chapter, to the practices of cancer care, including how determinations of value are made, often unequally, across contexts and communities. On one level, the issue of value can be reduced to the literal level of monetary value and economic costs. Even in strictly monetary terms, the costs of precision are already eye-watering. In 2019, the top five drugs by sales revenue were all new targeted therapies. Together, they generated over US$55 billion in revenue (Urquhart, 2020). But the multivalent nature of value, and its simultaneous normative and social resonances, is evident even at the literal level of economic cost. This was vividly illustrated on the cover of a recent issue of the MIT Technology Review (November 2018) devoted to the topic of precision medicine. Alongside the image of a young, white, apparently able-bodied baby, the questions ‘$2 Million Would Save Her Life. Could You Pay? Should You?’ pointed towards some of the rising costs, competing imperatives and resulting ethical questions that accompany the advancement of precision. The blunt $2 million price tag seems extortionate, but the value of the baby seems incontestable. To ‘price’ life in such blatant monetary terms inevitably sparks moral outrage, and yet, increasingly, health systems must contend with the financial limits of un/affordable innovations. The staggering cost of precision medicine also raises broader questions about the precise ends towards which state revenue collection and redistribution are directed. Is state subsidisation of expensive drugs of greater value than a homelessness intervention that improves life expectancy and reduces other costs over the life course and which might be, for example, 100-fold more cost-effective than a targeted therapy (see Kasztura et al., 2019)? Yet the social and moral constitution of cancer and homelessness as distinct types precludes such direct comparison and makes relative value a deeply contingent notion. While determinations of value ultimately require a multidimensional approach that includes both financial cost and other moral/ethical and therapeutic conceptualisations of value (to the individual, to their community, to society), access to particular precision therapies is increasingly situated within one’s own net worth. In fact, survivorship-inpractice is increasingly about considerations of cost, perhaps to the exclusion of questions of value. As we heard from health professionals and patients alike, and as shown later, cost was often the determining factor in patients’ ability to access precision medicine – whether that was because a wealthy patient was often offered options a poor patient wasn’t or because of varying accessibility of precision technologies across more and less well-resourced settings. Such differentials in access, and the determinations of cost/value within the economy of precision medicine, reflect societal priorities and forms of value-making, which we also expand on in Chapter 7.

Uneven Advancement in Practice This chapter primarily focuses on the aforementioned dynamics as articulated through a series of focus-group discussions with oncologists, junior doctors, cancer care nurses and clinical trial coordinators in two metropolitan hospitals on the east coast of Australia. The idea underpinning our eight focus groups, which included forty-seven

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participants in total, was to move beyond a disease-centred approach to precision medicine to explore a practice-based understanding of precision medicine as it is currently being played out in routine care. While clinicians’ perspectives, gleaned primarily through these focus-group discussions but also through individual interviews, are the primary focus of this chapter, we also include illustrative and sometimes contrasting perspectives from patients, whose perspectives are the centre of our analysis in Chapter 7. In the current chapter, we highlight the complexities that the ‘project of precision’ presents for those working in everyday care settings. The views we present here do not necessarily belong to those involved in major clinical trials, nor are they necessarily the loudest voices of the precision medicine movement in Australia. Rather, we present the perspective of ‘regular’ oncologists or oncology nurses, and how they interpret this genomic turn in terms of survivorship and the experience of cancer. A key discussion point across our conversations was the highly uneven advancement and institutionalisation of precision medicine in cancer care, despite its widespread capture of the collective imagination, illustrating some of the dynamics we are articulating as enchantment and acceleration. For a number of the more senior oncologists, this was most obvious in terms of how the field has changed over the course of their careers. One oncologist’s reflection illustrates the current enchantment with the subfields in which there have been considerable advances due to precision innovation, recounting the story of choosing an oncology subspecialty in the once ‘unpopular’ stream of melanoma: ONCOLOGIST #1:

There’s certainly been a big change in terms of there are some tumour groups that have had huge progress and there’s some that haven’t. So when I started treating melanoma fifteen years ago, it was because I was the junior consultant and no one else wanted to do it because it was a horrible disease to treat. Now, because of all these break-throughs, everyone wants to treat melanoma. And you’re like, ‘Oh, you’re so lucky to do melanoma.’ But I spent a long time doing not much … But there are still tumour groups around that are like that. So brain tumours, for example, there has not been a big break-through for that. ONCOLOGIST #3: And common ones like colon cancer, you know? ONCOLOGIST #1: Yeah, colon cancer has been stuck for quite a while … so it can be frustrating for the people who treat those cancers because they can see that some tumours have had big improvements, and they’re still stuck. Compounding the uneven progress of precision cancer care across tumour streams were a variety of structural considerations. For example, while Australia has a strong, publicly funded hospital system, which often leads to the assumption of equity, considerable variability in access remains. The groups talked about the ‘oncologist lottery’, and how one’s opportunities to access precision therapies in the Australian context were doctor-specific: CANCER CARE COORDINATOR #4:

So you can have two oncologists and the same patient’s sat in front of them, and one oncologist will go to the ends of

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the earth to find an oncogene for precision medicine and then go begging to a drug company and be really persistent and deal with all the emails and all the hard work that’s needed. Whereas another oncologist just won’t necessarily be bothered to do that. And so it can be quite doctor-specific, but it’s a lot of work. And it generally falls to the oncologist and myself and the pharmacist. Yeah. The postcode lottery (see Bungay, 2005) is a well-known problem in cancer care, with access to the ‘best’ care mirroring forms of privilege and disadvantage more generally. Access to precision care is amplified along these lines and also compounded by cultural inequality across cancer types according to perceived deservedness and the socially determined worth of the respective patient cohorts. This results in vast inequalities across cancer types in terms of what is funded. One oncologist explained the current funding landscape of precision brain therapies: ONCOLOGIST #18:

Given the incidence is one in ten, kids to adults, but all the money’s in kids. It’s pretty disappointing. FOCUS-GROUP CONVENER: Why? ONCOLOGIST #18: Oh, so much easier to fundraise and get [the pharmaceutical company] to pay. There’s another five million [dollars] into precision medicine the other day because we’re dealing with beautiful little children. And then getting money into adult cancer, brain cancer research, is very difficult. ONCOLOGIST #17: There’s perceived value, impact, that you can prolong the life of a child. ONCOLOGIST #18: The problem is the kids are damaged. I mean, it’s just so sad. But a lot of these kids are therefore very expensive to the society for the rest of their lives. If they do survive, they often don’t survive with any quality ...ONCOLOGIST #17: Well, the cost ties in with the perception of value. FOCUS-GROUP CONVENER: Perception, yeah. ONCOLOGIST #17: The value I was referring to is the perception that if you can prolong a child’s life significantly, they may have the potential to get into society, etc. Although [my colleague] said that it’s only worthwhile if they’re of the capacity to act [in] society, otherwise you’re prolonging a life, in an emotional sense, because it’s a child, and less so about their contribution. So you’ve got a seventy-year-old person who’s had a good, full life – is the value the same in doing it for that person? This extract illustrates the moralities and the multivalence of value of medical innovation in terms of cost, moral worth, contributions to society and in an emotional sense. The disproportionate investment in socially desirable subjects once again frames the project of precision, articulating ideas about value as not merely about cost but about the kind of life lived. Value, then, is necessarily always historically and culturally situated, and illustrative of collective sentiments about moral worth and marginalised subjects and bodies in our cultural milieu.

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Sexy Tech and Snake Oil: The Affective Attraction and Vulnerability of Precision Medicine Such collective sentiments were not limited to adjudications of value or the worthiness of particular bodies as the subjects of precision; they also animated the quest for precision, the pursuit of cure and the trajectories these set in motion. As a number of oncologists explained, the project of precision has inspired new ways of thinking and new modes of treatment: TRAINEE ONCOLOGIST #3:

The paradigm’s kind of shifting … I mean, yeah, I think that’s the big, evolving thing for us … I think more and more, even as a trainee, we’re starting to think like that, ‘What’s the underlying biology and how can we target this tumour in a different way?’ Because, I guess, chemotherapy is scattergun, isn’t it? And now we have this sexy new tech where we can understand so much more about these tumours, and then we have drugs as well. So it’s really changed how we think, from a treatment point of view.

While precision and its associated ‘sexy tech’ might represent a new scientific paradigm, in oncology there is another set of political and economic dimensions that are increasingly driving innovation and shaping the practice of cancer care: the profit motives of pharmaceutical and biotech companies. While the flows of financial capital through pharmaceutical research and development no doubt influence how oncology is currently practiced, this happens in ways that are not always straightforward, nor entirely divorced from various affective desires of clinicians. Talking about the role of private industry in oncology, one clinician put it the following way: ONCOLOGIST #6:

It’s nice for us, from a science perspective … That’s helping generate the science. It’s driving that … But again, I think it comes back to that those companies – as much as they’re doing the science, they’re there to make money. And they don’t say that, but you know their secondary aim is to help human beings. I’m sure their principal aim is to make money.

The same entanglement of collective sentiment and financial markets often leaves patients vulnerable to the logics of cure-at-any-cost that are so pervasive in our cultural milieu. As one oncologist explained: ONCOLOGIST #4:

I think cancer is uniquely primed, because you have people who are desperate with a disease … It’s ripe for metaphor and for desperation and for the selling of – ONCOLOGIST #1: Snake oil. ONCOLOGIST #4: – purported cures that really have no basis in reality. That’s where we’re at in cancer.

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Much of our analysis across the previous chapters has teased out the various social, relational, temporal and normative dimensions that make us ‘primed’ to search for certainty, answers and, ultimately, cures in cancer. Part of this is driven by popular media spins on new discoveries, which fuel patient expectations: TRAINEE ONCOLOGIST #7:

So for example, with immunotherapy, people are aware of immunotherapy through the media and in talking about things, especially lab work at the moment. And they tell you about this trial, ‘I saw it on the news. What’s going on? Can you …’ And you have to kind of temper their expectations because some of this stuff is literally just run off the bench. It’s very exciting, but experience will tell us that ten years is about the time before it goes into routine clinical practice. And so a lot of the patients have to be managed in their expectations on when these things will be coming out. And still maintaining hope, but being realistic.

Widespread enchantment with precision, alongside its uneven institutionalisation across cancer care in Australia, has led to a situation in which clinical possibilities do not always live up to the expectations that have been created, particularly in the public sphere. Another oncologist spoke similarly of the difficulties presented by media excitement about new technologies and translation of medical knowledge and expertise, and the potential for patient misinformation or confusion: ONCOLOGIST #4:

[We] still get the patients expecting immunotherapy. They’ll still walk in with this article saying, ‘Immunotherapy is the way forward’, and it’s like, ‘Yeah, but that’s the wrong cancer.’

This illustrates the complicated interplay between the affective enchantment with the future of precision care and the clinical realities of day-to-day cancer care. Of course, this is not to say that the two are necessarily distinct – indeed, as the clinicians highlighted in their varied accounts, the two intersect in increasingly inseparable ways. Current clinical practice routinely runs into the hopeful future that precision medicine promises. Yet how they intersect, the vulnerabilities that result and to what end remain important questions that the attraction of therapeutic innovation tends to obscure.

Affording Access In negotiating this uneven, overlapping and rapidly evolving terrain of clinical practice and precision innovation, we are presented with a wide range of challenges that defy easy categorisation or attribution to single causes. One junior oncologist we interviewed provided a particularly compelling account of the intersecting difficulties of the new space of precision cancer care, highlighting

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challenges of funding, access, actionability and how these play out under the daily time pressures of clinical practice: TRAINEE ONCOLOGIST #5:

I mean, to take it a step back from – even some of the testing and stuff has to be funded by patients, so there’s a commercial side to that, which automatically then selects patients that are able to afford that and also who are generally more well-informed about those options, which already slants things in a biased way. And then there’s the issues of trials and funding and drug companies. I mean, yeah, drug companies will always pay for things that are going to make them money. So it’s hard. Sometimes the research and knowledge base is a bit slanted as well in that regard. But, I mean, we can only do with the knowledge that we have, and surely there’s some benefits to the drug companies investing in these trials, because then we get more availability of treatments. But yeah, access to patients is the more day-to-day issue that we face, and, yeah, [full genome] testing and getting that organised for patients, having those discussions about self-funding, and then what we do with the results as well is tricky, in Australia especially. Because even if there are mutations detected, even if there’s a drug that exists that targets that mutation, it might not be available on the PBS [Pharmaceutical Benefits Scheme]. And so then you’ve got to have a whole other conversation about funding that, which is complex and expensive for patients. And so everyone walks in the door saying, ‘Oh yeah, I want to know my whole genetic make-up of my tumour.’ But the implications of having that information and the flow-on effects is still very complicated … And having those big conversations with patients is really difficult because, one, I don’t think we’re very good at discussing money, because that’s not where we come from. We’re here to help patients, and it’s hard when you’re restricted by them having to fund things themselves. FOCUS-GROUP CONVENER: So how do you guide that conversation? TRAINEE ONCOLOGIST #5: Yeah, with a lot of difficulty and not enough time … I think, to be honest, we often just don’t have that conversation, because there’s not enough time, and you also think that maybe if they’re not bringing it up, then they might not have the funds to pay for it. And those sorts of assumptions get made. Yeah. Amidst a wide range of issues brought up by this detailed account of the complexities of practice, the issue of cost and access is a central one, and one that clinicians returned to repeatedly. Often it was nurses who were most in touch with patients’ financial situations and the consequences of financing treatments. The following example captures some of the relational choreography of access across families and resources, and the affective dynamics of guilt, burden, privilege and discomfort that can surround it. Discussing the phenomenon of ‘self-funding’ treatments – in this instance, an immunotherapy that is not yet provided in Australia through the PBS – a cancer care nurse told us:

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NURSE #1:

It’s really hard. And I was put in a really awkward position. I had a patient, and his family was self-funding his immunotherapy, but they didn’t want him to know about it because if he knew about it, he would have said no because he didn’t want to be a burden. So then it was like having these awkward conversations, where it’s like – I remember one day the reg[istrar] has changed and the reg was like, ‘Oh, so how are you paying for the thing?’ and it was like the whole room just kind of dropped. Yeah, I didn’t really feel comfortable in the sense that it’s like being, not dishonest, but just having to be secretive about it. But then I also understand his family could afford it and they wanted to give him the best chance. So yeah, it was just a bit weird. Yeah. NURSE #5: $16,000, $20,000 a cycle and it could go for months – It’s just, you understand why they’re doing it, but sometimes you just think, ‘Oh, is it really that good of a chance?’ and, ‘What are their families going to be left…?’ I think it just becomes like this whole big – NURSE #1: It’s heartbreaking. NURSE #5: It is. NURSE #3: And most of our patients are not particularly well-off and don’t come from well-off families. I think it’s the exception where you get a family that can [self-fund] … It’s few and far between that they come through that they can actually afford it. So it doesn’t feel good, actually, knowing that they’re struggling to pay for things. While instances of families covertly funding expensive treatment were not common, some of the same relational difficulties, discomforts and silences were nonetheless pervasive. As trainee oncologist #5 mentioned above, often the prohibitive cost of such treatments meant that they weren’t discussed in consultations between patients and oncologists, remaining silenced both within the therapeutic encounter and often also beyond it. This experience was recounted by Dean, a patient in his forties and living with neuroendocrine cancer, in the following way: DEAN:

Like straight after surgery I didn’t get enough information straightaway. Now I’ve got a fair bit more, and that’s because I’ve been able to or well enough to do a lot of reading to learn more. It’s always interesting now to go back to the doctor and go, ‘Right, I’ve read about this medication, this medication, this medication’, and they’ll go, ‘Yep, you can do that. That will be $4,000 a month, that will be $5,000 a month, that will be $10,000 a month, that will be $27,000 a month’, and you just go, ‘Okay, so that’s why you haven’t mentioned them, because they’re not covered by PBS.’ [Treating oncologist] was right, and that is that the drug that I’m on … that’s currently being effective even though these other drugs, when you read the scientific reports on them, would appear to be even better, they’re just not currently covered because they’re newer. So I understand his thing is like, ‘Well, do you

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have enough money to go broke or don’t you?’ The fact is, I don’t have enough money to go and spend $27,000 a month. The prohibitive cost of these drugs represents an insurmountable barrier for many in accessing the fruits of therapeutic innovation. Yet beyond the question of cost, they also raise a wide range of questions around value more generally: what is the value of these therapies, to whom, and in what ways? What is excluded in the ongoing drive towards precision, and why do we continue, full throttle, in this direction, seemingly at any cost?

Valuing Innovation, Valuing Care The focus-group discussions that we undertook with cancer care professionals – including senior and junior oncologists, nurses, cancer care coordinators and clinical trial coordinators – provided a rare space for reflection on issues that can recede into the background of day-to-day clinical practice. Yet once the conversation was underway, these professionals made a range of insightful observations and comments about the ‘big picture’ questions of value and the place of precision medicine therein. Their responses crossed the boundaries between precision and ‘conventional’ cancer care, oncology and other medical subfields. One junior oncologist reflected on the ‘big picture’ questions through the issue of cost: TRAINEE ONCOLOGIST #1:

Our drugs are incredibly expensive, not just to the patient but also just in a broader health economic sense. It’s expensive treatment that we have to put on balance of how much benefit are we giving the patient, and we are obviously always going to be patient-centred and who is sitting in front of us. But when you do take a step back and look at how much money you spent in oncology on targeted treatments, on immunotherapy, it’s a lot of money, and we have to weigh that up in health economics for the nation, the world, in general as well, which is – FOCUS-GROUP CONVENER: Do you weigh it up in practice as well, and make decisions? TRAINEE ONCOLOGIST #1: Well, I think sometimes we don’t. When you’re looking at the patient, you’re not thinking about what’s Australia’s health budget at the moment. You’re thinking about Mr or Mrs X that is sitting in front of you and is possibly young, has so much life that they want left to live and you’re like, ‘Damn it, I want to give you the best-case opportunity.’ But sometimes when I have looked back, and my partner [in another medical subfield] has just talked about little things that people can’t get access to that are so benign and would actually help someone’s life so significantly, and I think about the cost of some of the drugs that we use, that offer – We’ve seen people die a month after they’ve had some of this treatment, and it’s exorbitant, and it’s trying to balance that in the broader context of everything as well, which I don’t think we do. In reflecting on the issue of cost, this participant referenced relative value across medical subfields and patients. In bringing up the ‘broader context of everything’

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that circulates around patients’ decisions about treatment and the end of life, this oncologist also gestures towards notions of the good life – of how we live, and how we die – and, subtly, how these are sidelined by the pressing questions of what to do now in the face of malignancy. A more senior oncologist positioned questions of value within a relative temporal frame, weighted between current value in terms of knowledge and future value in terms of potential treatments: ONCOLOGIST #1:

My perspective on it is that I think that the value is by and large in terms of the research and the knowledge, at the moment, for people. Like, I would be curious to know if broad-based molecular profiling of cancers actually is improving outcomes for the patients … It would not surprise me in the slightest if it does not. But I don’t believe that the treatment is there at the moment. But I think the value would be in developing the knowledge and to say – Like, I think there would be the odd patient, like one in a thousand, where you go, ‘Oh my god …’

Yet as discussed in Chapter 4, the intra-activity of temporality and the inseparability of past, present and future mean that cleanly demarcating between current and future benefit is impossible in practice. As with the inseparability of value across temporal registers, so too is value enmeshed relationally: ONCOLOGIST #16:

It’s that desire of a patient, and us, to a lesser extent, of wanting your patient to be that exceptional outlier that does extraordinarily well. And this gives the promise that we might find that. Even though … it probably is extremely hard. But it’s that hope of being that person and not being satisfied with the shorter-term expectation of, ‘Look, we’ll make you live longer and better, but we won’t cure you. And is that satisfying for you to know that?’

The interconnected desires of patients and clinicians resonate not only with the enchantment of precision medicine but also with the enduring clinical and cultural discomforts with the inevitability of human mortality that are routinely thrown into stark relief in the field of oncology and cancer care.

Discussion In many respects, questions about the value of precision medicine in cancer care speak to the broader issue of valuing life. This is well-trodden territory within the health, medical and social science literature. What makes this sphere of precision medicine particular unique is the moment in time (a time of great hopes and of considerable enchantment) and what it brushes up against (the limits of life). In terms of the first dynamic, we are at something of a watershed moment in the milieu of genomics as applied to cancer. Will it ‘prove’ transformative? Will it be manageable, from a health-systems perspective, in terms of funding and

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implementation? Within this milieu, the dynamics of acceleration and enchantment are not necessarily malevolent forces. And in fact, both offer much to us as individuals and collectives. However, there are also strong headwinds in the enduring questions of meaning and desire in the twilight of life. The problem of precision in many respects mirrors the problem of the human condition, which scholars in the social sciences and beyond having been contemplating for centuries. What is alterable, ‘fixable’, and what is inevitable? What should we be investing our energies in, and how are these energies distributed across populations and societies? This chapter has largely focused on oncology clinicians, who are critical actors in how these conundrums are played out day-to-day in the clinic, whether or not they have much sway over how they play out in everyday settings. They act within the liminal space between innovation and affliction, between cure and care, amidst the tension between prevailing and submitting, intervening and letting go – all of which occurs in dialogue with the social and cultural norms that we have discussed in previous chapters. The aspirations of precision medicine are, on one level, desperately needed in the field of cancer care, which has seen diminishing returns from cytotoxic therapies over the preceding decades and in which the oncologist, as healer, relies on iterative lines of treatments, contingency plans in the face of surprising results, and plans A, B and C. Then is enchantment with promising new cures, and acceleration towards the horizon of precision, central to the healer identities and to being and becoming as an oncologist? The story of precision medicine is thus also about particular culturally configured ideas about the healer, as well as about the political economy of the industry of innovation. The healer, in this particular milieu, is about life (not death) and cure (not living in affliction), and the palpable excitement is in the radical life extension, not the life well lived (and its well-managed end). Here the allure of cure structures oncology practice down to its very forms of socialisation, articulated here as what oncologists tend to talk about ‘over drinks’: INT.:

How do you see your colleagues dealing with these conversations [about end of life]? ONCOLOGIST: I’ve no idea, because we don’t often talk about it … Because in fact, in medical oncology we’re treaters, if you know what I mean? We have treatment options, people come to us and say, ‘What drug can you give me?’ So we operate out of a different framework. So do we sit down over a few drinks and talk about [end-of-life discussions]? No. What do we talk about? Clinical trials, latest treatments, you know, how does it apply to these patients? They’re the conversations that we have. The project of precision is thus a new iteration of an age-old problem: a human desire for more, and the valuing of time over other facets of life and death. This is not to say that all patients or doctors agree, or that cracks don’t constantly emerge, eventually fracturing this particular view of the scene. As we will see in Chapter 7, they frequently do, as patients and families make difficult decisions about whether

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to persist with particular therapies, or to participate in experimental trials. The critical role of social science is to see where the seams are unravelling and to provide a counterbalance to the enchantments of acceleration and break-through in precision medicine.

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7 PARTICIPATION AND THE MAKING OF POSSIBILITY

EILEEN:

[The oncologist] was sort of saying, ‘Do you want to keep going? Because you know we can’t cure you.’ I was like, ‘No.’ I didn’t know [then], but I know now … If it’s going to keep me here a bit longer, I’m happy to put up with the side effects. INT.: Is there a moment where you say, ‘I’m not going to push this any further’? EILEEN: Not yet. Even when I’m really sick, it’s like, ‘Oh god just [stop]…’ and then I think, ‘No, I can’t go yet.’ No, I’m not ready to go. I’m not going anywhere. They’ll have to keep putting more cycles [of chemotherapy] on [laughter]. Eileen, lung cancer patient Most social acts in life are tied to hope, in some way, shape or form. Hope for something better, something else, something different, or indeed, hope that things will never change. Dynamics of hope, and speculation about future possibilities, permeate everything we do, in weaker or stronger forms, depending on the context. Similarly, in the context of cancer, hope – or lack thereof (Olson, 2011) – often takes centre stage; it is a haunting (Broom, Kenny, & Kirby, 2018), a feeling (Brown, 2015), an individual desire (Dauphin et al., 2020), a collective demand (Wiles, Cott, & Gibson, 2008) and perhaps even an industry (Petersen, 2015). Hope can literally keep us alive, but it can also perpetuate suffering and even prevent good deaths (Derber, 2015). Hope is, as we argue in this chapter, a complicated social practice, steeped in obligation, relationality and structural demands. While there has been considerable work on hope conducted in the humanities and social sciences (e.g., Brown, 2011; Kleist & Jansen, 2016; Petersen, 2015), there has been relatively little exploration of therapeutic innovation at the nexus of cancer and hope (Brown, 2011) or at the intersections of industry, practices of lifeprolongment and individual and collective desire (Ashmore, 2012). This has become particularly important in the rapidly evolving context of therapeutic innovation in cancer care, as outlined in Chapter 6. The rise of precision medicine, and its various

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manifestations across the field of oncology, is radically shaping the dynamics of hope in all its complexities (Prasad, 2020; Prasad & Gale, 2016). The limits of traditional cytotoxic chemotherapy became evident in the latter periods of the twentieth century, and the genomic turn saw an explosion of interest in the next frontier for the cure for cancer (de Chadarevian & Kamminga, 1998; Hogarth, Hopkins, & Rodriguez, 2012). Captured in the various political proclamations worldwide – one the most prominent being the US’s Cancer Moonshot (Elwood, 2016) – precision therapies have been heralded as the ‘next generation’ of cancer therapeutics, which form the blueprint for what cancer care will look like for future generations. The rise and proliferation of molecular diagnostics and therapeutics – under the umbrella of precision medicine – have produced an exciting, unruly and uneven terrain of hope and possibility (Day, Coombes, McGrath‐Lone, Schoenborn, & Ward, 2017). As mentioned in Chapter 6, precision medicine has had the most dramatic impact in the context of cancer care. Various discoveries are making fundamental changes to how knowledge is produced about disease (the emergence of new ways of ‘trialling’ across tumour types, including basket and umbrella clinical trial designs) and scales of participation (transnational, cross-tumour trials of many patients, targeted for their potential shared molecular mutations), with the proliferation of combination trials (Schork, 2015). The rise of precision medicine in oncology has, in turn, resulted in an acceleration in the number of trials ‘on offer’ to patients, which means that a greater proportion of patients than ever are participating in some form of trial as part of their treatment process. The prolific production of new cancer drugs, often expensive and often used ‘off-label’ by oncologists (that is, for purposes beyond those for which they are currently funded), means that new forms of experimentation, beyond the realm of official scientific investigation, have also become normalised, particularly for those who can afford it. Precision medicine has thus introduced significantly more opportunities for trial participation in the context of cancer, but there remain significant questions around for whom and to what end. This recent explosion of opportunities, albeit hugely varied across national and socioeconomic groups, has created a highly complex terrain in terms of the dynamics of cancer survivorship. Cancer survivorship has for quite some time been enmeshed in ideas about the steady progression of ‘science’, fractured across socioeconomic lines and ‘market’ investment in the progression of innovation (Lee, 2017; Timmermans & Kaufman, 2020). As a result, survivorship can imply holding on until a drug is developed or a cure is discovered. The molecular turn has fostered this dynamic, and furthermore raised new questions about value, cost and vested interests. Moreover, new cancer therapeutics are increasingly, and in some cases disproportionately, costly, and represent an increasing proportion of the total available economic resources for cancer care across societies. This introduces the problem of proportionality in genomic approaches to cancer care; that is, it raises questions around the value of the genomic turn versus investment in other terrains of health and social care and welfare.

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For many, staying alive with cancer requires negotiating the complexities of innovation and opaque market forces, and assessing one’s capacity to contribute to scientific progress (vis-à-vis withdrawing from experimentation to live whatever life one has left) and, often, to pay for it. Mapping how this is experienced by patients – the push and pull of trials and markets – and the costs and benefits from their perspectives is a key task for social scientists, as it speaks to issues of care, justice and ethics as well as coercion and exploitation. What types of questions might be pertinent in thinking critically about the emerging nexus of innovation, precision and survivorship? Do the aims and ambitions of biomedical innovation resonate with the needs of patients, carers and communities? If survivorship is increasingly embedded in the ambitions of science that are realised within competitive capitalist economies, what does this mean for people living with cancer in day-to-day life? This raises complex ethical and moral concerns around participation in science, especially in the genomic epoch. We can’t answer all these questions, but in-depth data drawn from patients themselves can certainly help to start the conversation.

Considering Hope and Its Consequences What we seek to work towards here is an understanding of how hope works, the affects it accommodates and the effects it produces, whose interests it serves and how it is constantly made and remade through attempts at innovation. Furthermore, we strive to demonstrate how hope achieves particular things for particular stakeholders within oncological settings. The clinical trial, for instance, institutes a wide range of logics, assumptions and normative structures. It places contractual obligations on patients and can become a means of structuring care in the service of certain interests over others (for example, in prioritising the interests of financial investors versus those of patients and their families). Moreover, the packaging of ‘participation in science’ as a cultural narrative and normative force provides a means through which to sanitise ‘the trial’ of its potential economic and political ambitions/agendas. A key dynamic here, and one that is critical for us in the context of survivorship, is the idea that through scientific innovation, ‘progress’ is being made and ‘momentum’ is being achieved (Singh, 2017). This is not to suggest that such ideas are illusions, or indeed that there is no validity to participation in science and innovation in the attempt to live-with (and potentially beyond) cancer. Rather, it is to consider the dependency of the idea of scientific advancement on economic, political and cultural forces and, critically, to understand trajectories of innovation as a materialisation of power relations in pursuing particular forms of mastery and propagating particular kinds of ideas about the nature of bodies and disease (Boudry & Pigliucci, 2018; Kaplan, 2019; Krige, 2019; Scheffler, 2019). ‘Innovation’, and its current manifestations in cancer settings, does ‘work’ in producing receptive subjects of cancer (or cancer patients) and in making the future possible by containing the present or, perhaps, in making the present containable through allowing us all to (re)imagine our potential futures within the

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march of technological progress. The very possibility of a future – whatever it may look like – is often an alluring prospect for people living with cancer. The future thus has incredible affective pull, and it is hard to disentangle the allure of a future from the volitional present in the motivations for participation in biomedical research and innovation. Such considerations and potential motivational distortions are not new (see, for example, Harris, 2005; Rhodes, 2017). The premise of primum non nocere (‘first do no harm’; Sokol, 2013) is one articulation of the type of principle we are alluding to here. Yet such principles artificially simplify a far more complex reality and set of affective pushes and pulls, particularly in the fast-moving context of the proliferation of innovation. What is clear is that hope is a potent binding force in the context of innovation, mobilising and collectivising the project of scientific discovery and, in the case of oncology, the proliferation of precision therapeutics. While there have been ‘trials’ in medicine for centuries, and in oncology for much of the twentieth century, the number, costs and complexities of trials are increasing exponentially. Moreover, the dynamics of participation (costs, care, side effects and the operations of research protocols) have complex flow-on effects. We also know that there is significant divergence between countries and contexts in terms of who has opportunities to participate in trials and under what circumstances (Fisher, 2020), depending on geographic location (Global North or South, urban or rural) and economic and social identity (class, race, ethnicity and so on). In this way, the molecular turn intersects with existing dynamics of participation in science, creating a web – or perhaps an economy – of hope. Hope is, however, an unruly force, particularly when placed in the hands of those facing cancer, who may or may not be willing to endure the therapeutic practices developed to extend life, often at all costs, or participate in our collective ambitions of the future. A life with cancer is often a life of struggle with competing desires that have a life of their own. Such desires may include those of ‘a quick death’, ‘abandoning treatment’, a ‘slow progression’ to death and so forth. We have already seen many of these desires played out in the pages of our previous chapters, and they also appear in the context of science and innovation. These are the virtueless affects of the survivorship milieu; they constitute that which should not and cannot be spoken – which, of course, makes it even more important to give voice to them here. Yet the pull to participation (in ‘life’, in ‘community’ and in ‘science’) is, as we shall see, palpable in the survivor stories we heard. Often this took the form of an assemblage of actors pulling cancer patients towards more and more participation in science, in the pursuit of more and more longevity. The clinical trial is only able to elicit the will to participate by operationalizing the will to survive and cultivating resilience and positivity. Acts of ‘participation’ in the collective project of precision weave through the cultural production of ‘good character’ as embedded in the practices of survivorship (Sayer, 2020). It is part of the broader governmentality of life with cancer, whereby ‘science’ mobilises and is mobilised by affective dispositions through which it offers the potential to live on in an imagined cancer-free future.

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It is in this sense that we are asked to be receptive subjects. Indeed, as Anderson (2010) notes, receptivity pulls us towards a biophysical future in which science is an active player, though sometimes in a game of diminishing returns. Indeed, it may be that receptivity to others and the world is a foundational aspect of human biosociality. Consider Leo Bersani’s (Bersani, 2018, p. vii) concept of receptivity as an inescapable feature of embodied existence: The human body is, from its intrauterine origin, a body that receives. The dual moment constitutive of reception can be observed most closely in our earliest postnatal life: breathing in and breathing out, ingestion of food and excretion of waste, entering sleep and emerging from sleep into wakefulness. The receptive body is, then, an incomplete category: reception is inseparable from expulsion. For Bersani, we are pulled into relations with things and others as much as we seek to control them. At the level of matter, human bodies are nothing but the leakage of cosmic particles. Receptivity thus also implies bodily porosity to the stuff of the universe. Bersani writes (2018, p. ix): Receptivity has a cosmic dimension. If, as cosmologists claim, our organism still carries atoms from the Big Bang, an impersonal cosmic being coexists with the mind and the person each of us has become in the course of human evolution. We are psychologically motivated to move; but we are also propelled mindlessly, atomically. This notion of the body as receptive has traction here, as we seek to understand the lived experience of participation in therapeutic innovation. It sounds like a simple relation, but it is not. We started this chapter with an excerpt from one of our participants, Eileen, who was getting closer and closer to death. Eileen’s account resonates with the notion of an unstoppable destructive momentum – of being ‘propelled mindlessly’, in Bersani’s phraseology. The concept of receptivity that we explore in this chapter provides an important counterpoint to the political economy of hope, which paints a picture of the superstructures surrounding innovation as largely, if not exclusively, driving the vitality of participation in, and in cooperation with, science. We would rather offer a more rounded view, which adds another layer of complexity onto this gigantean innovation/precision medicine movement and participation of patients therein.

The Allure of Participation This chapter in particular draws on a mix of one-on-one interviews with Australian cancer patients and their carers, solicited diaries of people living with cancer, and focus groups with cancer care professionals around the social dynamics of precision medicine. Patients presented with a range of cancer types and at

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different stages of disease, while cancer care professionals included oncologists, nurses, cancer care coordinators and trial coordinators with experience across a similarly wide range of tumour streams. This work was completed in Brisbane, Queensland, and Sydney, New South Wales, between 2015 and 2020. One of these participants was Eileen, with whom we started this chapter, and for whom, like many cancer patients, hope sustained her receptivity to medical treatment even when it was unbearable. As Eileen expressed it: ‘“Oh god just [stop]…” and then I think, “No, I can’t go yet.” No, I’m not ready to go. I’m not going anywhere. They’ll have to keep putting more cycles [of chemotherapy] on [laughter].’ She laughed, of course, but what she articulated was deadly serious. While on the one hand she recognised the abhorrent character of perpetual cycles of chemotherapeutics, it could never quite push her far enough to say enough, ‘No more, I’m done.’ The imagined line in the sand – too much suffering, too many side effects, too little quality of life – kept retreating or never quite arrived. The proliferation of more and more clinical trials and the palpable anticipation of new trials emerging soon was a key dynamic across Eileen’s and other participants’ accounts. The ‘trial’ was very often positioned as a potential saviour and as the final frontier of hope, as we see in the following account from Josephine, who was in her sixties and had been living with breast cancer for well over ten years: I just keep on probably thinking that maybe there’ll be a trial come up. You hear every night on the news they’ve come up with some new treatment for this and new treatment for that, so you hope that maybe something will happen one day. But you’ve just got to really live each day as it comes, take each day as it comes, otherwise you will be committing suicide – well, I would be, anyway. Another participant, Michael, in his sixties and living with neuroendocrine cancer, echoed this sentiment, representing his own enthusiasm to participate as a foregone conclusion and a logical assessment of probability of success in trying a new treatment: [My oncologist] … asked me at the very beginning when I saw her, she said, ‘Look, there’s a clinical trial going in Australia and New Zealand for people that have got [your cancer]. Would you be interested?’ I just said, ‘I’ll do anything.’ I mean, why wouldn’t you? Why wouldn’t you give yourself the best chance to come out the other side of it all, all good? In the case of Michael, who was living with neuroendocrine cancer, comparison to the prospect of palliative care, a clinical trial offered the possibility of a different outcome. The support of his doctor also worked to confirm his receptivity to the trial: MICHAEL: [My wife] asked the question, ‘What if the radiation is unsuccessful?’ and this was a conversation before we talked about the clinical trial with the chemo, and he said, ‘Well, if the radiation is unsuccessful, then we’re talking palliative care.’

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That’s what the registrar said? Yeah. I thought, ‘Oh shit.’ INT.: With a straight face? MICHAEL: Yeah, ‘We’ll be talking palliative care.’ INT.: How did you respond to that? MICHAEL: We were both taken aback. Anyway, [the doctor] came in and she was very reassuring and then talked about the clinical trial and talked about how they would be treating me for a cure. That, as I say, was perhaps calming and reassuring to listen to her talk about how I had a very, very, very good chance of beating it. MICHAEL:

Such accounts illustrate complex interactions around the spectre of futility, death and trials, and the anticipatory pressure of mortality in the negotiation around participation. We are not arguing that this represents coercion, but rather that the ways in which experiments are presented matter, and how palliative care is presented (for example, as ‘nothing else’ and the ‘end of the line’) becomes an important part of the narrative within the relational dynamics of participation. The self-affirming question ‘Why wouldn’t you give yourself the best chance?’ was partnered with an idea of participation as a moral and virtuous contribution to society more broadly, as illustrated later (Harris, 2005; Rhodes, 2017). This is an appealing narrative in the context of a desire for a positive, virtuous departure from this world, and indeed a desire to persist within the world. In the moral choreography of participation in precision innovation, then, the potential benefits that will flow to the self can be extrapolated outwards, towards others. This was articulated by Gerald, aged in his sixties and living with lung cancer, who explained his willingness to participate in a trial in the following way: If it works, I’m great. If it doesn’t work, somebody else might benefit, [and that would] be great. So they said, ‘Okay, we’ll sign you up for the trial.’ Now, I felt 100 per cent better on the trial drug than I did on the chemo drug. Since I’ve been diagnosed, I’ve had eighteen months … Any information that you get out of here or they get out of the results, for me, could help your brother or your sister or a family member. So to me, if they said, ‘It’s not really working, but we’re going to keep you on it. Would you just sign up again?’ I will. If they say, ‘Look, we would like to take you off this’ whatever drug I’m on, I can’t even spell it, ‘it’s slowed things down, but it’s not going to cure you. But we’ve had a release from America of this one. Would you try it?’ [I would say,] ‘Too right.’ As is evident from Gerald’s account, and a range of our other participants’ stories of treatment and care, a consistent narrative centred on trial participation as a civic duty, or, perhaps more accurately, the idea of participating in science as a parting gift both to the community and to future patients. This was a particularly interesting aspect of the interviews, given the proliferation of precision-related oncology and

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the often-minimal demonstrated effects from trialled drugs (Prasad & Gale, 2016). Our participants routinely talked of their willingness to participant in trials, even if they had no immediate longevity effects, if it helped others. Todd, in his sixties, described the complex combination of civic duty and potential benefit in his account of living with prostate cancer: INT.:

Would you also go on clinical trials? Oh, hell yeah. Absolutely. Not only from my own point of view – a clinical trial mightn’t necessarily save my life or prolong my life or whatever – but I am in a position where I can help medical science, I guess … Things that they learn from me might become useful down the track somewhere. Maybe it might prove that that particular theory doesn’t work or does work or semi-works or whatever. The only way you’re going to find out is to try it.

TODD:

Sue, who was caring for a patient living with neuroendocrine cancer in his fifties, commented: SUE:

The other thing with the trial as well is it’s for the next lot of people coming through. I mean that’s the best you can do, I suppose. INT.: So it’s also about giving something back to other people? SUE: Of course. Yeah. INT.: How important is that to you? Because we also hear that quite a bit. SUE: I don’t think it’s the priority, but it is one of the offshoots of it, which is a good thing … Well, that’s how [my husband] would feel. He’s an organ donor, so he just feels if you can’t fix me, you might be able to fix somebody else. So that would be [his view], I think. But as far as I’m concerned, I just think you get the best possible care and you’ve got everything on the table that’s available. The idea of trial participation as a moral duty is, we note, not at all new in the cancer survivorship scholarship. The production of scientific participation as virtue, as well as its disciplinary potential, is quite a well-documented dimension of bioethics and the social studies of science (see, for example, Kelty & Panofsky, 2014). However, there has been less attention paid to how these enduring forms of virtue play out in the contemporary clinic, or how the moralities of the ‘good patient’ may intersect with the dynamics of trials and the ever-increasing forms of experimentation evident in the cancer care terrain. Such considerations become increasingly acute in an epoch of precision medicine, whereby each person becomes the focus of a potential trial, in proliferating experimentation but not necessarily proliferating successful results. The nexus of accelerated innovation, hope and vulnerability forms a complex terrain in which the values of science, and the allure of discovery, may find themselves misaligned with everyday values beyond the clinic.

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Finding a ‘Zebra in a Field of Brumbies’: Hope, Hype and Vulnerability In this section, we turn to the focus-group data with cancer care clinicians to explore the relational dynamics of clinical trials. The field of oncology is often precariously positioned between patient care and science and innovation, mediating and brokering options and outcomes, and assessing complex conceptions of value, benefit and costs. We asked a range of health care professionals working in the field of oncology, including oncologists, trainees, nurses, cancer care coordinators and clinical trial coordinators, to talk us through how they experienced this positionality as mediators between patient and participation. This was unanimously articulated as fraught, with emotions running high and pressure placed on all clinicians to find new avenues of life-extension for their patients. In many cases, the dynamic was articulated in terms of patients ‘not hearing’ or ‘understanding’ the limitations of precision medicine trials in the context of the desperate need for a future: CLINICAL TRIALS COORDINATOR #6:

It’s quite demanding on the patients, especially the phase one trials, because there’s a lot of data to be collected, there’s a lot of blood samples to be taken. So we have to really educate or inform them right from the day dot that this is fairly intensive. You have to come in and out of the hospital more times than you would for other treatments. We have to monitor you a lot closer because we don’t know what could happen. So we have to spend a lot of time in the consenting process so that they’re well and truly informed. But still they don’t hear.

The patient who wants everything, regardless of risks and benefits – that is, the patient as agentic in pushing for further and further innovation/life at all costs – was a common figure in the accounts of oncology professionals and researchers. However, in other group discussions this simplistic picture broke down, as the participants articulated the complex entanglement of patients, carers and clinicians collectively engaged in the orchestration of hope and, in turn, how this was fuelled by the proliferation of genomic ‘opportunities’, despite their questionable outcomes for many patients: ONCOLOGY TRAINEE #5:

I think a lot of [momentum towards trials], some of it is driven by us. If we know that there’s a drug available and we have a patient sitting in front of us that looks that they might fit a particular genotype, we will push for that testing to be done within our labs or find a way for the patient, maybe, that’s not the whole Foundation One panel – that’s so expensive – maybe like a more limited panel within Australia or something like that, which we’ll try and get organised. And that’s with the aim of then accessing a drug that, again, we might be able to get compassionately or on an access program or the drug company might give it to us. So a lot of it has to be

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driven by us, and we do those things. But the big picture, general terms – send everyone for Foundation testing, ask the drug companies for the drugs that might work – that’s not happening across the board. No way. Another participant said: MEDICAL ONCOLOGIST #17:

Well, you’re looking for a zebra in a field of brumbies,1 right? You want to be the outlier. We all know. We all have survivors in the rare tumour types. MEDICAL ONCOLOGIST #18: One in 100. MEDICAL ONCOLOGIST #17: But they’re a minority these days. The most we know, we can prolong life and make it better, but we won’t cure you. Those people, it’s that desire of a patient, and us, to a lesser extent, of wanting your patient to be that exceptional outlier that does extraordinarily well. And this gives the promise that we might find that. Even though … it probably is extremely hard. This discussion, and others like it across the focus groups, provided significant insight into the ways in which oncology clinicians mediated the production of hype and the potential consequences, in terms of both cost and value to the person. It was often murky within the groups as to who or what was orchestrating the scene – clinician ambition, patient desire, market opportunities, scientific mastery? – and in which direction pressure was being applied. Was demand driving new markets for genomics or was the market being actively created? Clearly, these are not mutually exclusive processes, but it was these complexities that emerged and were articulated within the groups. This inability to reconcile the assemblage of care and desire fundamentally complicates the narrative of human receptiveness as though it existed independently of the dynamics of patient vulnerability, scientific curiosity and the profit-driven pharmaceutical industry. Receptiveness to participation and further experimentation denotes a commitment to a series of shared values around the importance of ‘more’, ‘longer’ or ‘extra’ life; yet this assumes that all actors actually want the same things that innovation provides, which, as we know from the previous chapters, is highly unlikely. What has emerged from our research, especially in our interviews with those who were living-with cancer, is that people often have a very different take on value, quality/quantity and benefits of participation than what is assumed in the relentless pursuit of innovation. It is these lay experiences that we argue should be more central to questions of the relative investment in different spheres of illness, intervention and care.

Resistance, Reluctance and the ‘Good Life’ A missing piece of the precision puzzle is often the patient experience, which has rarely been explored (for an exception, see Day et al., 2017). In our work, our

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participants were highly diversified in their responses to the ‘opportunities’ offered to them in the era of precision oncology, with some recounting stories of transformative success but others offering significant push-back against options for trial participation and targeted therapies. The latter group emphasised in interviews and in their diaries the ‘back stage’ of persistent dilemmas around participation and the limits of the virtuous subject (as willing to try, willing to give, willing to take a chance). This invariably involved discussion of disconnects between the clinical perspective and the personal assessments of value, and balancing quality of life (in the past and yet to come) versus therapeutic potential and the endless pursuit of ‘cure’. As Bob explained of his experience living with lung cancer: ‘I’m 69, and as far as I’m concerned, that’s a good life span. If I carked it tonight I wouldn’t care less. It’s just the way I go [laughter] … I feel if I go anytime now or after, I’ve had a good life.’ Natasha, who was living with brain cancer, concurred: I was given a form to say that when it came back, I would be eligible for a new trial that was happening. I felt like the oncologist was very good in offering me that, but it’s almost like I thought … When I read it, I thought, ‘Well, there’s no way in the world am I going to do that.’ She was quite excited … It was almost like, ‘People are queueing up for this trial and you’ve been okayed for it.’ But I certainly wasn’t interested in it at all. It looked to me like I would be a lab rat, and no – even if it is for future generations. It would be nice, but no. Bob’s and Natasha’s accounts provide useful examples of the patient perspective being critical to the assessment of worth. For Natasha, the palpable excitement of the treating oncologist reflects the relational pull towards the normative and its stark contrast with the lived experience. This was illustrative of the push-back we heard from participants against more and more life-making, however experimental, and the lay construction of a ‘good-enough life’. This, of course, pushes up against all the logics of practice and cultural norms around affliction. The excitement of the oncologist embodied the complexity of the allure of innovation, asking us and the participant questions about whom this is really for, and to what end. The conflict between patient reluctance to engage in experimentation and the normative tendency of the clinic to promote it was also made visible in other participants’ accounts. Wendy, who was diagnosed with lung cancer in her sixties, struggled with her new ‘precision’ therapy, as she recounted in her diary reflections that we discussed in Chapter 2. Wendy is, on the one hand, a ‘lucky patient’ of the precision milieu, in the sense that even ten years ago, no targeted therapy would have been available for her, and a quick death (probably within six months) would have been the likely outcome. Yet the constant irritation of her side effects from the precision drug, although they were viewed as ‘minimal’ from a clinical perspective, led her to conclude that ‘side-effects cause continuous pain + discomfort with no end in sight … I do not want to live this type of life.’ Yet

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following a relapse and a short stint in hospital, she reconsidered: WENDY:

Two days later, I was discharged. But after I was discharged, I received a discharge summary that I read and I found that one of the tumours … has started growing and has doubled its size. So when I read it, I was alarmed so I now was thinking, every time I go to see the doctor I always ask, ‘How is my scan? How is my MRI?’ and she says, ‘Fine, fine. It’s shrinking, very good’ and all this, and when I read this thing, I was alarmed. I thought, ‘Double the size and you’re not doing anything?’… So I asked the consultant and she said, ‘No, it’s all right. It’s nothing to panic about.’ I say, ‘I panic when I see it’s double its size.’ She said, ‘Well, the thing is, firstly, although it’s double its size, it’s still very small. Secondly, all the other tumours and everything else are still shrinking. It’s only this particular one and it’s double its size, but it’s still not big enough to be of concern.’ INT.: Of concern to whom, I guess, is the question. WENDY: Yeah, to her, to them. I say, ‘So what are you going to do?’ She says, ‘We’re going to wait and see if this one starts growing too big’, and they’ll either do a surgery or give me radiotherapy on this particular tumour only. I came home and I thought about it, and thought, ‘No, I want to avoid surgery or radiotherapy as long as I can help it.’ So the next visit, I went, I told the doctor, I said, ‘Look, I have thought about it and I would agree to you putting my dosage up.’ INT.: Okay, on the [precision drug]? WENDY: On the [precision drug]. Because she started me off on 150 milligrams and then because I had an episode, I didn’t want to do it any longer, so she dropped it to 100, which makes the side effects more manageable, it’s more comfortable. It’s basically quite okay, near normal. It’s not normal, but – but when this happened, the doctor actually said, ‘You didn’t want to take the medicine, the drug, and that’s why we had to drop.’ Basically, indirectly hinting that it was the drop of the dosage that caused these. I said, ‘Not that I didn’t want to take, because I could not handle the side effects of the drug.’ She said, ‘No, you only have very slight effects’, and we sort of got into an argument and I got quite angry because I thought, ‘I’m the one suffering the side effects. Yes, I know you’re a doctor, but you did not go through these.’ So in the end I thought, ‘No. I have to see her. I need her help and everything.’ So in the end, I think she realised it … and she recovered and she said, ‘Okay, look, look, don’t worry about these. We’ll be watching for these’, and then during that consultation she also told me that there’s something else, I don’t know what, growing in my chest. But it’s only two millimetres and too small to worry yet. So in the end, I came home and thought about it and I say, ‘I would rather you increase my dosage again. What I will do is I will actively manage the side effects’, and so she increased my dosage and I have been taken back to 150 milligrams. Of course, the side effects are more serious, but that’s why I have now got that box of things on

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the table, all the different creams and oils and whatever that I need to manage, and, you see, all the chairs that I sit on I have to put because of the creams and everything … Other than that, I am just trying to be positive. Wendy’s account and those of many others who took part in our various periods of fieldwork offer a cautionary tale in terms of the objective gains of disease progression or reduction vis-à-vis the quality of life. It also offers insight into the mundane minutiae of suffering-through-innovation. Regardless of the clinical view, as reported by Wendy, the life offered through participation was inherently compromised yet was not recognised as such by the treating clinician’s focus on disease. Such moments of contradiction powerfully illustrate the necessity of questions of ‘value’ across perspectives, with attention to the day-to-day experience of living-with disease, even alongside innovation.

Discussion The current scene for cancer survivorship is increasingly shaped by the proliferation of molecular therapeutics and the circulation of investment capital (Prasad, 2020). Modern health care has always been shaped by the politics and economies of knowledge and benefitted from the ambitions of science (at least from certain perspectives and for certain subjects). Yet the scene at present is unique and moving quickly. The Human Genome Project ‘breathed life’ into the transnational project of cancer eradication (though centralised in the Global North), paving the way for massive investments, new methods of data collection and experimentation to extend the reach of science, and raising new questions as to the value of scientific discoveries for patients (vis-à-vis economies and corporations). In this sense, survivorship is heavily indebted to this contested epoch of precision. And we have only touched on a small number of issues. We are also seeing increasing polarisation in opportunities for experimentation and participation in precision oncology – that is, off-label use in private clinics – as well as major splits between opportunities in the Global North and Global South. In our view, it is critical that those working in cancer survivorship pay close attention to the emerging ethical and moral problems of genomic innovation. Without open and transparent discussions about the contested notion of value – from a market, patient, clinical and scientist perspective – there remains a potential for considerable coercion, exploitation and ignorance as to what matters to the patient. This, we argue, can be usefully challenged with renewed attention to the experience of the person and the acknowledgement of ‘good-enough lives’ and the value of ‘easing into death’ in addition to the impulse to hold onto life and wanting more of it (in the many meanings of ‘more’).

Note 1 Brumby is an Australian term for a horse.

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CONCLUSION

We write the conclusion to this book on cancer survivorship at a time when the global coronavirus (COVID-19) pandemic is reaching its peak across many countries (see WHO, 2020a). A viral pandemic seems like an odd context in which to be writing about cancer survivorship, and yet in many respects the pandemic has brought to the fore many of the same questions that circulate in the cancer survivorship milieu and that appear in the pages of this book. These are questions that concern themselves with the origins, moralities, values, costs, meanings and social determinants of disease and survival. COVID-19 has raised the threat of disease and potential mortality to a population level not seen in decades, at least in the Global North (WHO, 2020b). The centrality of disease and ill health within the collective consciousness of our entire species has brought into view – and into public debate – many issues that have previously been sidelined, of which living-with cancer is just one (see also Dave, Friedson, Matsuzawa, Sabia, & Safford, 2020; Evans et al., 2020; Merks et al., 2020; Shippee et al., 2020). These include our inherent vulnerability and precarity as a species (Wilson, Dwivedi, & Gámez-Fernández, 2020), our deep connectedness to others (Bian, Miao, Lu, Ma, & Guo, 2020), our capacity for care and abject carelessness (Chatzidakis, Hakim, Littler, Rottenberg, & Segal, 2020), the fragility of our access to, and willingness to offer, help (Connell, 2020) and the disproportionate value placed on certain lives over others (Ehni & Wahl, 2020). The pandemic, and the different epidemiological, political and cultural responses to it worldwide, has powerfully illustrated just how deeply disease is entangled in our social worlds. Now more than ever, this entanglement is centre stage in humanity’s tussle with its collective present and future (Ecks, 2020). This cataclysmic global event, which will have impacts for generations to come, is already having immediate impacts on the care of those with cancer and their day-today lives (see Broom et al., 2020; Burki, 2020; Hanna, Evans, & Booth, 2020; Kutikov et al., 2020; Ueda et al., 2020; Wang & Zhang, 2020; Xia, Jin, Zhao, Li, &

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Shen, 2020). While the health impact of the pandemic will ultimately ease over time through a combination of vaccines and public health strategies (see WHO, 2020c, 2020d), the seismic jolt of COVID-19 has already left an indelible mark and will no doubt put in motion global societal changes. Some of these are already being observed: for example, the ‘pivot’ towards online interactions (Mehrotra, Ray, Brockmeyer, Barnett, & Bender, 2020), the social justice issues raised in terms of access and accessibility (Schulz et al., 2020) and the reconstruction of what is ‘necessary’ in health care, treatment and life more generally (Dietz et al., 2020). The pandemic is making a profound impact on the sphere of cancer care as clinical trials are delayed or stopped (e.g., NextCure, 2020) and survival rates drop due to delayed screening and missed opportunities for treatment (Helsper et al., 2020). And these are just some of the formally documented impacts for people living-with cancer in the context of COVID-19 (Broom et al., 2020). Those living-with cancer, in many respects, are poised to become collateral damage in our attempts to forestall contagion in the pandemic context (Sud et al., 2020). The coronavirus has made visible the interconnectedness of the practice of survivorship, and health more generally, with relations of care (as we discussed in Chapters 4 and 5), with economic and political systems (as outlined in Chapters 6 and 7) and indeed with the effects of pandemics or war (El Saghir, Soto Pérez de Celis, Fares, & Sullivan, 2018). In many respects, the virus is merely a fleeting actor in the broader choreography of humanity’s tussle with evolving (yet perpetual) individual and collective threats to mortality, vast inequities in access to care, contested assessments of value, the vagaries of market capitalism and so forth. This global challenge further illustrates how survivorship as a social practice articulates the economic, health and political priorities of the moment, requiring consistent critical analysis. To return to the analysis we presented in the preceding chapters, what we have attempted to convey – drawing on a rich array of qualitative data including interviews, solicited diaries and photographs taken by participants themselves and interviews and focus-group discussions with health professionals – is how cancer survivorship is an evolving, collective social production. It is so much more than disease, treatment, cure or death. It is not about who lives and who dies. Rather, cancer survivorship is a social practice, embedded in the desires of our time (however diverse), the moral tales we tell ourselves, the enduring pull of (complex) kinship and caring relations, and the individual and collective existential dread of an impending end. It is a social practice that tells the elaborate story of the varied things in which we have faith (science, fact, technology) and those things that some of us have sidelined (afterlife, grief, loss, hopelessness, dread; Bell, 2010; Berlant, 2011; Farberman, 2019). It is a story of the circulation of local and global capital (driving the pursuit of innovation, solutions and ‘cures’), the disproportionate investment in certain people over others (that is, the ‘virtuous’, privileged subjects often of the Global North; see Steinberg, 2015) and the reproduction of social inequalities through structurally mediated opportunities for survivorship. As a result, cancer survivorship is much more than disease outcome, and ought to be viewed as an elaborate social, moral, ethical,

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economic and political practice. In considering cancer survivorship in this way, and building on all of these accounts, we view the following considerations to be critical in its analysis now and into the future.

Meaning Makes (Things) Matter Usually it is assumed that it ‘works’ the other way around, that matter gives rise to meaning. In the context of cancer as a lived experience, that meaning makes (things) matter is a critical ontological lesson from our participants’ stories. Supporting this position does not deny the biophysical realities of cancer, nor does it reify narrative or story. Rather, it calls into question the separateness of subject and object (see Deleuze, 1988; Giddens, 1984), and it poses difficult questions: does how we talk and think about disease make it that way? How does the character of meaning-making practices – of which we have shown a wide array of examples across these chapters – make other things unlikely, illegible, improbable or simply impossible? The potency of meaning lies, in many respects, in its inseparability from what we are talking about. It is a productive actor in and on the scene of survivorship, not merely an interpretive layer through which we might better understand subjective experiences of biophysical disease.

Cancer Reveals (Unsettling) Connectivities The ghost or spectre was a consistent part of our analysis (see Chapters 2 and 4; also see Broom, Kenny, & Kirby, 2018; Derrida, 1994; Gordon, 2008), and for good reason. The lived experience of cancer may pull closed the shutters or it may open them up to reveal a more panoramic view. Mysteries or ‘blind spots’ which may once have been rationalised away, put aside or just ignored come vividly into view. In the widened lens of precarious futurity and existential questioning, ghostlike presences become a common feature of the everyday scene. It is when we are in crisis that these apparitions make themselves known to us: ‘ghosts appear when the trouble they represent and symptomize is no longer being contained or repressed or blocked from view’ (Gordon, 2008, p. xvi). For people living-with cancer, ordinary expectations and everyday truths – that medicines will work, that persistence pays, that more life is intrinsically desirable – are called into question. Hauntings are a way of articulating how affliction reveals the cracks in the surfaces of coherency – of the agreed-upon value of certain things over others (Derrida, 1994). The present, and the practice of survivorship, thereby becomes a troubled site of deep interconnectedness, unravelling, as it will, the pastness of history and the assumed arrival of the future, revealing the grip that imagined futures have on us in the present.

Time Unravels (on) Itself In the context of cancer, no matter how much work we do to (re)anchor our temporal sensibilities (finding more time, planning our survival, looking forwards

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and not backwards, staying ‘in the moment’ and so on), time doesn’t play along. It does different things. This dislocation and diffusion of our usual sense of time leads us to ask: what is time, whose time, what is time for, what value does it have, and do we really want or need more of it? Memories of life-before-cancer inevitably seep into the present, despite the collective demand for ‘forward-lookingness’; personal and collective histories haunt and shape the present, and demanded/ imagined futures, emergent from collective desire to prevail, constantly undo attempts at ‘making the most’ of the time we have left. Time folds in on itself yet becomes the centre of clinical attention (there is still time; you can have more time; there is not much time; no time; out of time). Time for what, our participants often asked, for whom and on whose terms?

The Normative Scene of Cancer Settles on Us The normative dimensions of cancer, while also certainly (at least partially) held up by us, also actively make (some of) us and (certain) things matter more than others. The pursuit of more time is one facet of that, but as we have shown, the normative practices of cancer survivorship extend much further, assembling an elaborate constellation of affliction in dynamic, constantly evolving and never fully secure relations. But there is also resistance, push-back, disgust and dismissal. The scene is never set, subjects are never passive and collectives never entirely control meaning-making. Cracks therefore appear, giving rise to temporal and ontological disorder, relational conflict, hauntings, refusal and spectacular challenges to the norm. We see, as shown in the estrangement dynamic discussed in Chapter 4, how we are pushed endlessly forwards and backwards and sideways in relationships of struggle – with disease, people and the world – which cannot be fully reconciled. The enduring nature of this tussle, however, holds space for the normative dimensions of survivorship to be challenged, to be otherwise and to be lived differently.

Cancer Survivorship Is an Evolving Market The lived experience of cancer now exists within a series of economies and professional projects, including the rise of precision medicine, as we outlined in Chapters 6 and 7 (Nishi et al., 2016; Olson, & Cook, 2018; cf. Rushforth & Greenhalgh, 2020). In this way, thinking about survivorship also requires us to consider the structures of advanced capitalism and new forms of coercion and neglect, as played out in the context of therapeutic developments (Au & da Silva, 2020). This means fully connecting the various vicissitudes of living-with cancer day-to-day with the market for biomedical innovation and the political economy of innovation, drawing on work within the sociology of science and technology (e.g., Rajan, 2012; Sturdy, 2017) and the philosophy of science (e.g., Boniolo & Campaner, 2019; Ferryman & Pitcan, 2018), in order to ensure we capture the full effects of the push for further innovation for the field, and lived experience, of cancer. Participation as virtue, trials as a public good and the increasing

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marketisation of care are each critical considerations in terms of where survivorship is likely to head over the course of the twenty-first century. We began this book with the allegory of a prehistoric turtle to show that cancer has always been with us (however one might define that particular collective). Despite enormous investment in biomedical research and development in pursuit of its ‘cure’, especially over the last few decades, cancer is likely to remain with us, one way or another, well into the future. Expanding our analytic frame beyond the disease-centredness that underpins attempts to cure it to include the kind of sociological analysis presented here may help facilitate our attempts to live-with cancer, in all its varied forms and experiences, in the meantime.

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for global precision medicine. Expert Review of Molecular Diagnostics, 16(1), 11–23. doi:10.1586/14737159.2016.1115346 Olson, R., & Cook, P. S. (2018). Genomics: The clinical encounter and parallels across complementary and personalized medicine. Sociology Compass, 12(9), e12621. doi:10. 1111/soc4.12621 Rajan, K. (Ed.). (2012). Lively capital: Biotechnologies, ethics, and governance in global markets. Durham: Duke University Press. Rushforth, A., & Greenhalgh, T. (2020). Personalized medicine, disruptive innovation, and ‘trailblazer’ guidelines: Case study and theorization of an unsuccessful change effort. The Milbank Quarterly, 98(2), 581–617. doi:10.1111/1468-0009.12455 Schulz, A., Mehdipanah, R., Chatters, L. M., Reyes, A. G., Neblett, Jr., W. N., & Israel, B. A. (2020). Moving health education and behavior upstream: Lessons from COVID19 for addressing structural drivers of health inequities. Health Education & Behavior, 47(4), 519–524. doi:10.1177%2F1090198120929985 Shippee, T., Akosionu, O., Ng, W., Woodhouse, M., Duan, Y., Thao, M. S. & Bowblis, J. R. (2020). COVID-19 pandemic: Exacerbating racial/ethnic disparities in long-term services and supports. Journal of Aging & Social Policy, 32(4–5), 323–333. doi:10.1080/ 08959420.2020.1772004 Steinberg, D. (2015). The bad patient: Estranged subjects of the cancer culture. Body & Society, 21(3), 115–143. doi:10.1177%2F1357034X15586240 Sturdy, S. (2017). Personalised medicine and the economy of biotechnological promise. The New Bioethics, 23(1), 30–37. doi:10.1080%2F20502877.2017.1314892 Sud, A., Torr, B., Jones, M. E., Broggio, J., Scott, S., Loveday, C. … Turnbull, C. (2020). Effect of delays in the 2-week-wait cancer referral pathway during the COVID-19 pandemic on cancer survival in the UK: A modelling study. The Lancet Oncology, 21(8), 1035–1044. doi:10.1136/gutjnl-2020-321650 Ueda, M., Martins, R., Hendrie, P. C., McDonnell, T., Crews, J.R., Wong, T.L. … Stewart, F. M. (2020). Managing cancer care during the COVID-19 pandemic: Agility and collaboration toward a common goal. Journal of the National Comprehensive Cancer Network, 18(4), 366–369. doi:10.6004/jnccn.2020.7560 Wang, H., & Zhang, L. (2020). Risk of COVID-19 for patients with cancer. The Lancet Oncology, 21(4), e181. doi:10.1016/S1470-2045(20)30149-2 Wilson, J., Prakash Dwivedi, O., & Gámez-Fernández, C. (2020). Planetary precarity and the pandemic. Journal of Postcolonial Writing, 56(4), 439–446. doi:10.1080/17449855. 2020.1786904 WHO. (2020a). Coronavirus disease (COVID-2019) situation reports. Retrieved from www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports WHO. (2020b). Archived: WHO Timeline – COVID-19. Retrieved from www.who.int/ news-room/detail/27-04-2020-who-timeline---covid-19 WHO. (2020c) Coronavirus disease (COVID-19) advice for the public. Retrieved from www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public WHO. (2020d). Draft landscape of COVID-19 candidate vaccines. Retrieved from www. who.int/publications/m/item/draft-landscape-of-covid-19-candidate-vaccines Xia, Y., Jin, R., Zhao, J., Li, W., & Shen, H. (2020). Risk of COVID-19 for patients with cancer. The Lancet Oncology, 21(4), e180. doi:10.1016/S1470-2045(20)30149-2

INDEX

abjection 109–12 acute lymphoblastic leukaemia 3 acuteness 90 affect: collective 107; positive 112; sociology of 10–1 affective economies 19, 43, 102–3, 113 Ahmed, Sara 84–5, 102, 107 All of Us Research Program 120 anticipation 30–1 anxiety 52–3, 90 attitude: in cancer experience 65, 76; case examples of 67–71; characteristics of 77; as collective practice 66; as cultural silencing 65; culturally mediated nature of 66, 76; definition of 65; “getting on with it” 69; “good” 69; importance of 64, 66, 78; living-with cancer affected by 64–5; malignant part of 78; moral 70–3; negative 65; normative ideas about 72; paradox of 67–70, 78; positive 64, 70; power of 67–70, 77; push-back on 72; recovery and 68; as relationality 73–7; sociological perspective of 66; treatmentspecific 65; valorisation of 66 attitude policing 76 Australian Council of Learned Academies 120 authentic, being 69 authority 61 Baradian social theory 19 becoming, cancer as 13, 27–8, 37, 85 being present 86 Berlant, Lauren 103, 114 Bersani, Leo 140 biomedical surveillance 54 Biopolitics of Feeling, The 121 biosociality 140 biotechnologies 1–2

bodies: dis/embodying 31–5; knowing 34–7; not-knowing by 36, 42; receptivity of 140–41; sociology of 30 bodily surveillance, waiting and 54 Broom, Alex 48 CAM See complementary and alternative medicines cancer: absence of symptoms 54; ancient history of 1; as becoming 13, 27–8, 37, 85; biomedical view of 26–7; biophysicality of 27; change caused by 85; collective feelings effect on subjective experiences of 101; dis/continuity of 83–4; as disease, start of 27; diseasecentred model of 3; dis/embodying 31–4; disentangling the self from 52; embodiment of 32, 40–1; as emergence 13, 28, 30, 34; as global burden of disease 9; imagining of life without 93; individualisation of 7; as lived experience 51; living with 10; moral discontents of 103; normative dimensions of 154; normative discontents of 103; ontological politics of 28; phenomenology of 86; practice of 48; relational approach to 7; resistance to eradication 3; social context of 1; as social practice 18, 26; as spectral presence 89; war on 3 cancer care: postcode lottery in 125; waiting as part of 48–50 cancer patient identity 108 cancer survivorship: affective economy of 19, 43, 102–3, 113; affective elements of 100; biomedical perspective of 3; cancer treatment as part of 2; case studies of 5–7; definition of 8–9, 27; diagnosis as start of 27; disease-centred approach to 3–4;

Index

159

dominant models of 26–7; etymology of 7; as evolving market 154–55; individualisation of 10; as innovation 14–5; molecular therapeutics effect on 148; as moral commitment 113; moral structures of 71; normative dimensions of 39, 42; person-centred approach to 4; postdisease model of 9; as practice 43; relationality of 12–3, 73; self-affirming orientation of 70; as social production 152; social relations affected by 8; sociality of 103; sociology of 9–10; subjectivity and 11–2; survival curves associated with 27 cancer triumphalism 103, 111 cancer-as-practice 30 Catharanthus roseus 2 cervical cancer, human papillomavirus vaccine for 4 challenging assumptions 72 character 77 chemo brain 34 circle of life 13 clinical trials: participation in 139–42; presentation of 142; reluctance to engage in 146 collective affect 107 collective sentiment 126 collectivism 104 complementary and alternative medicines 30 computed tomography 2 connectivities 153 constructivism 29 continuity: description of 38, 89; ontological 83 coping: importance of 64; with side effects of medications 58 coronavirus 151–52 COVID-19 151–52 cross-disciplinary cancer scholarship 65 cruel optimism 103, 114 CT See computed tomography cultural category, survivor as 8 cultural silencing 65 cytotoxic chemotherapy 2

emergence, cancer as 13, 28, 30, 34 emotion(s): accumulation of affective value 107; affect of 113; as affective economy 102; affective value of 107; circulation of 104–6; collective production of 109; complexity of 100; devaluation of 109; dreams and 89; entanglement of 105; inaccessibility of 112; inexpressibility of 109; interactivity of 104–6, 111; moderating of 69; negative 109; nonnormative 112–13; origins of 111; positive 113; power of 109; regulation of 113; relationality of 101; rippling effect of 102; sociology of 11; types of 101 emotional exchanges 105–6 enchantment 121–22 entanglement: in cancer 83, 85–94; collective sentiment 126; estrangement and 96; quantum 83; relational 91; sociality of 82; temporal 91; terminal 51–4; of time and space 83–5 estrangements: consequence of 109; definition of 85, 96; entanglement and 96; as exile 85 ethicized state of being 43 exile: description of 96; estrangements as 85 expectations 74–5

death 66 see also mortality Derrida, Jacques 83 devaluation of emotions 109 diagnosis: discontinuity caused by 38; incidental 34; increases in 10; incurable, as certainty 42; knowing 34; medical programme of 95; mortality and, time

fear 101–2 feeling well 41 feelings: concealment of 112; disavowal of 112; interactivity of 106 feelings-of-cancer 102 focus groups 16–7 forgetting 52–3

between 39; reactions after 34–5; shock associated with 35; social withdrawal after 110; survivorship begins at time of 27; telling family about 105 dis/continuity 38, 83–4, 86–9, 91–4 disease progression, negativity and 66 disease-centred approach: description of 3; to precision medicine 124 disease-centred treatment 3 disease–technology–pharmacology nexus 3 dis/embodying 31–4 dis/embodying of cancer 31–4 disentangling the self 52 dismissiveness 90 disposition: definition of 70; nonconcordant 71 dreams 89 dying 40–3

160

Index

future: anticipation and 30, 43; cultural orientation toward 122; dis/continuity of 86–9, 91–4; innovation effects on 138–39; iterative repatterning of 95; knowing and 39, 91–4; planning of 83 future’s past 87 genetic mutations 120 “getting on with it” 69 Gilman, Alfred 2 global burden of disease 9 Global North 148, 151 Global South 3, 148 good life 145–48 Goodman, Louis 2 guilt 56 hauntings 50–1, 54, 60, 95, 153 “hauntology” 83, 95 having to wait 49 “here and now” 82 Hitlin, Steven 103 hope: as binding force 139; consequences of 138–40; description of 13, 74–5, 113, 136; orchestration of 144; precision medicine and 136–37; sociological theories around 14 Horizon 2020 120 Human Genome Project 119, 148 human papillomavirus vaccine: cervical cancer reductions from 4 imaging technologies: development of 2; types of 2 immunotherapies: cancer experienced affected by 10; description of 2, 119; development of 10 inauthenticity 112 in-between 94 incurability, uncertainty and 42 innovation: cancer survivorship as 14–5; future affected by 138–39; hope and 139; medical 125; trajectories of 138 intervention, tolerating 57 iterative repatterning 95 Jain, S. Lochlann 27, 95

living-with cancer: attitude in 64–5; attitude policing and 76; case interviews about 31–4, 86–95; challenges associated with 37; collective coconstitution of 84; complexities of 43; coping with side effects of medicine 58; dimensions of 37; estrangement caused by See estrangements; expectations about 112; feelings associated with 112; inability to plan as challenge of 37; innovation and 138; living-with treatment versus 58; normalcy during 55; phenomenology of 83, 94; relationality and 95; struggle associated with 139; temporal aspects of 59; temporal dislocation caused by 91; treatment effects 59; uncertainty of 40, 56 magnetic resonance imaging 2 “making memories” 86–9, 95 malignancy: embodiment of 32; negativity and 66 McManus, Susan 113 meaning-making practices 153 medical expertise 60–1 mind–body dualisms 30–1 misrecognition 113 MIT Technology Review 122 molecular diagnostics 137 moral attitudes 70–3 moral consciousness 70 moral economy 103 morality: sociology of 103; of treatment 107 mortality: anticipatory pressure of 142; coping with 75; diagnosis and, time between 39; dis/continuity of knowing about 92 MRI See magnetic resonance imaging National Institute of Health 120 naturalised assumptions 103 negative attitude 65 negative emotions 109 negative thoughts and feelings 75 negativity 66 normalcy 40, 55–7 normativity 55–7, 109 not-knowing 36, 42

knowing 30, 34–7 lived experiences, normative expectations versus 34

On Waiting 49 ontological continuity 83 optimism 103, 106, 113

Index

161

osteosarcoma 1

quantum entanglements 83

palliative care 141 past: dis/continuity of 86–9; iterative repatterning of 95 patient–carer dyads 19 perseverance 107 person-centred approach 4 pharmaceutical industry 14 photo collection and elicitation 17 plant alkaloids 2 positive, being 69 positive attitude 70 positive emotions 113 positive psychology 64 positive thinking 65–6 positivism 29 positivity 65, 73–7, 107, 114 postcode lottery 125 power: of attitude 67–70, 77; contradictory effects of 61; of emotions 109 practice of cancer 48 precision medicine: acceleration of 121–22, 132; access to 122–23, 127–30; affective enchantment of 127; aspirations of 132; collective sentiment of 126; conventional treatment versus 130; costs of 121–23, 130; description of 2, 14, 119; disease-centred approach to 124; enchantment with 121, 127, 132; ethical issues regarding 121; growth of 120–21; “healer” in 132; hope and 136–37; innovation in 130–31; institutionalisation of 124; molecular diagnostics in 137; in oncology 119; participation in 139; promise of 120–21; receptivity to 140–41; socialisation of 130; sociological dimensions of 121; trial participation opportunities created by 137; uneven advancement of 123–25; value of 122–23, 125, 131; vulnerability in 126–27 precision oncology 148 present: dis/continuity of 86–9; iterative repatterning of 95 primum non nocere 139 prognosis 36, 87–9, 95 prognostic certainty 95 prognostic uncertainty 42 proximity 30–1, 44 push-back 72, 146

recasting outlooks 72 receptiveness to participation 145 receptivity 140–41 recovery: attitude and 68; normative hope for 111 relational dynamics 89, 96 relational entanglements 91 relational misrecognition 100 relational ontology 95 relational solidarity 107 relationality: attitude as 73–7; of cancer survivorship 12–3, 73; definition of 73; of emotions 101; in family context 74; proximity and 44; temporality and 95 resilience 65 resistance 145–48 responsibility 56

qualitative interviews 16–7

Sayer, Andrew 103 scales of participation 137 Schuller, Kyla 121 Schweizer, Harold 49, 59–60 scientific innovation 138 scientific participation 143 self: disentangling the 52; sense of 31, 33, 68 self-evaluation 91 self-funding 128 self-work 64 semistructured interviews 47 sense of self 31, 33, 68 sentimentalism 121 side effects 57–9, 146 social injustice 113 social practice: cancer as 18, 26; waiting as 50 social science scholarship 47 social structuring 6 social withdrawal 110 solicited diaries: description of 17–8, 47–8; forgetting 52–3; living experience of diminishing returns 58; medical expertise 60–1; normalcy 55–7; normativity 55–7, 60; results of 51–4; side effects 57–9; waiting 48–50, 53, 59–60 spectres 51 stoicism 71, 106 stress 66 struggle, valorisation of 71 subjectivity, cancer survivorship and 11–2 suffering 6, 85 surveillance: description of 50; waiting and 54

162

Index

survival outcomes 120 survival-in-relation: description of 104; emotion 104–6 surviving-with cancer 101–4 survivor: collective expectation of 113; as cultural category 8; as cultural production 8; identity as 7, 10; incurable 47; legalistic origin of 7; terminal 9, 61 targeted therapies: cost of 121; description of 119 temporal dislocation 60, 91 temporal entanglements 83, 91 temporality: description of 30–1, 44, 131; proximity and 95; relationality and 95 terminal entanglements 51–4 terminal illness 41–2 terminal survivors 9, 61 thought, illness and 76 time 153–54 time and space, entanglement of 83–5 trajectories of innovation 138 treatment: attitude focused on 65; cognitive effects of 33; coping with 58; efficacy of

35; embodied experience of 33–4; feelings about 108; knowing bodies and 35; living with 2, 58–9; morality of 107; physical effects of 33; prohibitive cost of 129; self-funding of 128; side effects of 57–9, 146; tolerability of 57; waiting for 49 treatment trials 137 trials: participation in 139–42; presentation of 142; reluctance to engage in 146 uncertainty: incurability and 42; of livingwith cancer 40; waiting versus 49 uneven advancement, of precision medicine 123–25 Vaisey, Stephen 103 valorisation: of attitude 66; of longevity 57–9; of struggle 71 Vinca rosea See Catharanthus roseus waiting 48–50, 54, 59–60 waiting–transcending dialectic 52 war on cancer 3