Survivorship: A Sociology of Cancer in Everyday Life

Alex Broom, Katherine Kenny

• Editorial: Routledge
• Año: 2021
• ISBN:
  9781351118521
• Edición: 1
• Categoría: Medicine
• Categoría: Diseases & Allergies

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 twenty-first 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.

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 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 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 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 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 bec...