The moral cosmology of cancer: Making disease meaningful

Luck, serendipity and the moral cosmology of cancer

Luck, fortuitousness, serendipity – these are not words and ideas usually associated with cancer. Yet, as evidenced in participants’ accounts, these are central logics to the everyday meaning-making around cancer. Sociologists have variously sought to understand the social significance of cultural ideas like ‘fate’, ‘luck’ and ‘happenstance’ (e.g. Turner, 1996; Weber, 1963), as well as their normative origins and implications. Yet within the sociology of health and illness, and cancer specifically, there is surprisingly little explication of the role of such logics in the ontological politics of disease (though see Manderson et al., 2005). Classic social science scholarship on illness and affliction has focused on illness as a meaning-making cultural practice (e.g. Bury, 1982; Pierret, 2003; Zola, 1972, 1973) but little emphasis has been placed on luck therein. However, other scholarship in the history, philosophy and social studies of science has emphasised the broader scientific project of evidence-making as a way of disciplining luck, especially through statistical ways of knowing (e.g. Hacking, 1990; Porter, 1996). Luck, as we shall see in this article, is thus in constant tension; at once excised from (enlightenment/scientific) epistemic values while also remaining enduringly meaningful within these very structures of knowing, ordering and experiencing disease.

In a classic sociological account of luck, Merton and Barber’s (2004/2011) The Travels and Adventures of Serendipity chronicles the evolution of the term and idea of serendipity, with particular attention to the place of fortuitous unanticipated consequences in the construction of scientific knowledge (see also Barber & Fox, 1958). As Merton and Barber (2004/2011) observe, serendipity (fortune/luck/accident) is never of isolated significance for individuals, but rather arises within a particular social and normative order, and with somewhat paradoxical effects. This characterisation of serendipity resonates with certain features of living with cancer, from the knowing/sagacious oncologist, to the lucky/intrepid patient, and the importance of the (often accidental) discovery of cancer, which, as we discuss, is almost invariably cast as fortuitous. Merton and Barber (2004/2011) emphasise that serendipity, luck and fortuitousness are not merely benevolent cultural formations, but produce multiple (often contradictory) consequences that can potentially threaten the social order. The ‘problem’, they posit, is that serendipity is accompanied by moral baggage, insofar as luck (good or bad) presents a threat to the sense of orderliness in the world. As such, luck may bestow good fortune, but also unsettles orderliness and perceived control:

The problem of unexpected good and evil is a part of the more general problem – the factor of unexpectedness has especial poignancy for men [sic] insofar as they place value on a predictable universe inhabited by rational individuals. . . . Good fortune, like ill fortune, is in some measure uncontrollable, and both create the problem of squaring things as they are with things as they should be, or, to put it another way, of answering the question of why they are as they are. It is the problem of finding meaning in the general irrational aspects of the world, and in the way particular people become the fortunate or unfortunate victims of those irrational events. (Merton & Barber, 2004/2011, p. 150, emphasis added)

The visitation of luck inevitably unsettles the vision of an orderly world, raising questions around the deservedness (or undeservedness) of that which is otherwise hard to explain:

Luck or chance, according to these formulations, does not favor people at random; rather, it is prepared minds who are able to benefit from luck, and to preparedness may be linked such qualities as alertness, flexibility, courage, and assiduity. Only the able and virtuous are lucky . . . just as on the battlefield fortune favors only the brave. (Merton & Barber, 2004/2011, p. 171, emphasis added)

As shown below, the hasty pivot from unexplainable chance to adjudications of deservedness, and further, to injunctions to particular forms of action, are central features of living with cancer. It is this constellation of deservedness, meaning-making and normativity that we mean by the ‘moral cosmology’ of cancer. As a result, chance carries with it the normative pressure to ‘make good’ on what fortune alone has bestowed – to ‘make sense’ of chance by ‘making good’ on luck. Whether cancer is cast as good or bad fortune – good in the case of discovering it ‘in time’, or bad in the case of it having arisen at all – the opportunity to ‘make good’ on cancer almost universally demands complete conviction (Frank, 2003; see also Ehrenreich, 2009).

Conjuring conviction, managing regret

The normative tail of serendipity reveals itself in the art and practice of conviction. We note that in interrogating conviction, we do not seek to diminish self-efficacy and self-determination, or undermine the potentiality of individual agency in cancer. Rather, we seek to examine the normative fields that inform – though do not necessarily determine – forms of action and facets of the lived experience of cancer. That is, to ask: in which ways does conviction direct; what are the initial and ongoing parameters of possibility; and, to what end? Here, we explore the normative and disciplinary consequences of serendipity and conviction as cultural bedfellows and the (at times unhappy) marriage of luck/fate, individual potency and action. We consider who this mobilises and how, what happens to those who fall outside such normative framings (e.g. those with aggressive, advanced or terminal disease), and how this inflects the everyday enactment of cancer. The consequences of this narrative and normative work are most accurately revealed in the backstage feelings-of-cancer, including the seemingly contradictory emotions/relations that populate the affective ² scene of cancer (Wetherell, 2012, p. 3). If serendipity is mediated through adjudications of merit and deservedness, cancer-related mortality is haunted by the spectre of (possible future) regret, contributing to this complex normative/affective scene (see also Broom et al., 2018).

Regret holds an almost pariah status in the social imaginary. Captured emotively in Edith Piaf’s No Regrets – ‘No, nothing, no, I do not regret anything. Neither the good that was done to me nor the evil’ – or more recently in the hashtags #YOLO and #noregrets, the rejection of regret has enduring cultural traction. In contemporary illness and affliction, conviction and the rejection of regret are relationally produced and temporally bound across patient and carer, present and future. Here we highlight that regret is not an individually embodied emotion, but historically, relationally and collectively produced (Price, 2018). In A Theory of Regret (2018), Price argues that denial of regret, and the concomitant embrace of conviction, betrays human complexity and the diversity of life. He explains the absence of regret as:

. . . the decisive moment in which one declares that one regrets nothing – not as a sign of virtue, as it is typically heard in boast, but as an expression of conviction. By ‘conviction,’ I mean a commitment to first principles, or the betrayal of human complexity and the diversity of life in the ongoing adherence to what we have only ever believed in one way. If I profess my conviction, if I give it a name, I usually do so when the corresponding signs of my belief – what I believe and what I want you to believe even more than I do, so that I am never left to doubt myself – have gone missing in the world. (Price, 2018, p. 1)

Regret, like other negative affects, becomes a concealed dimension of cancer subjectivity, revealed only through its disavowal as an abhorrent state, which denotes a certain form of failure in life and death. Materialised across clinician, patient and carer, serendipity and conviction become normative, while regret and other unruly feelings of dis-ease, are marginalised. Here we seek to make visible the moral cosmology of cancer – what is valorised and marginalised – and its productive and disciplinary functions.

Serendipity as opportunity and obligation

Whilst cancer and luck may seem an odd partnership, it was a dominant way participants made sense of their diagnosis/disease experience. Participants articulated various logics for why cancer emerged within their bodies, and what this meant for their approach to disease and life more generally. Cancer was presented variously as ‘opportunity’ (to demonstrate one’s deservingness of cure) (cf. Frank, 2003), as exception (with the intention to be a statistical outlier or ‘three percenter’), and as pursuit (to persevere in spite of it, or ‘run with it’):

I: So how do you approach your life with cancer. . .?

Participant 39: At this moment I feel like I’ve been given an opportunity and I’ll take it with both hands. I’m going to live life to the absolute fullest . . . Look, I’m lucky. I’m really very lucky that they found it when they did and the sort of treatment I’ve had so far on the care, whatever time I have now, and I’m quite positive that I’ve got a fair amount of time for my age, I’m going to accept it and run with it. (Female diagnosed with lung cancer aged 70–79)

Similarly, knowledge of cancer was characterised as an opportunity for action, which might be precluded in situations where mortal threats were more immediate:

Participant 43: That poor bugger up the coast the other day that got hit in the shark attack. How many car accidents a day are people killed [in]? That poor bugger in [location] the other night, hit over the head with a bottle and killed. I’m sorry for people like that not having the opportunity to sort things out. In my situation I do have the opportunity to sort things out and I’m glad about that . . . (Male diagnosed with lung cancer aged 50–59)

While luck served an important sense-making function for many, we also observed its less obvious disciplinary effects, and how these two aspects of luck dialectically evolved over the course of disease, treatment and care. Whilst Frank (2003) articulates various facets of the moral dimensions of survivorship – including moral imperatives to ‘rise to the occasion’ of cancer treatment – few have focused on the tangled relationship between luck, deservingness and regret as part of a broader social, moral and affective scene of cancer. Our participants articulated several implications of their ‘lucky’ diagnoses, often involving staying positive, pursuing standard treatment and complying with prescribed medical pathways:

Participant 5: The doctor said to me I have a 90% chance [of survival] if this is my only tumor, of living five years. Ninety percent of five years is what they told me . . . There’s a good chance it [treatment] could work on it, but they don’t know. They said, ‘Let’s come to that when we get to it.’ So I accept that maybe I can beat it by willpower . . . I’m not new age-y or anything like that, but I do believe that a positive attitude and an attitude of, ‘I’m going to give this my best shot,’ and that is, ‘I’ll put my metaphorical fist up and give it a good fight’. (Male diagnosed with head/neck cancer aged 50–59)

Frequently, the conviction to ‘give it a good fight’ was achieved relationally – across bodies and evolving over time – and helped bolster participants’ attempts to weather the challenges of treatment and the uncertainty of their prognoses (e.g. Broom et al., 2019; Jain, 2007; Kenny et al., 2017). This reorientation towards ‘fighting’ was often reiterated by carers, who recounted patients’ evolving inclination towards treatment in the context of medical and interpersonal ‘input’:

Carer to Participant 39: I know on the first day it was very much resignation [to death]. She wasn’t going to have treatment. She just wanted to come home. But then speaking to a different [clinicians] . . . she was getting a lot more hope about what treatments could do . . . So they were all having their little bits of input. As I said, it [her hopefulness] kept improving. The prognosis kept getting, okay, this is not give up, roll over and die sort of thing. It’s worth putting some effort into it. (Son and carer to female diagnosed with lung cancer aged 70–79)

Across the interviews, luck was deployed through individualised logics (‘I’m one of the lucky ones’), and relational pressures (‘You’ve got to have hope’), forged within relational intimacies of informal and formalised care between loved one and afflicted person, and benevolent practitioner and therapeutic subject/patient. Here, luck was an important sense-making practice in accounting for one’s situation (finding luck within adversity), but also required certain forms of action to ‘make good’ on the luck received. As we discuss below, failure to make good on the luck accompanying cancer was seen as anathema to normative cancer survivorship (cf. Bell, 2010; Steinberg, 2015). In this sense, and in line with Merton and Barber’s (2004/2011) analysis of serendipity, luck represents known uncertainty, seemingly undoing planning and forecasting tactics, and unsettling the linear progression of things; yet, as we see below, it is also mobilised within clinical encounters despite the paradox it represents to expertise and scientific prowess.

The mobilisation of serendipity was revealed within clinical encounters, alongside the logics of hope (cf. Brown, 2015; Novas, 2006) that pervaded these ‘benevolent’ therapeutic relations. Participants articulated the potency of luck as a narrative trope, especially deployed in reading their (often poor) prognosis as ‘rather lucky’, in (tacit) comparison to others with poorer clinical outlooks. This is particularly ironic given that poor prognoses of many of our participants (from a clinical perspective) even relative to other people with cancer, including those with lung, brain and head-and-neck cancers. Of particular interest here is how fortuitousness emerges as a central logic to the relational enactment (and encouragement) of survivorship:

Participant 80: Dr [name] cheered me up the other day. She says, ‘[Patient name], you’re not a cancer sufferer. You’re a cancer survivor.’ That changed everything straight off. Just that word.

I: What does it mean? How does it change . . .?

Participant 80: Well, I’m surviving. If I’d have let this go, if I hadn’t have had that fluid in my lung . . . If I hadn’t have had that, maybe this other [cancer] problem might’ve got worse and it might have knocked me out with that. So I feel as though I’ve just been lucky enough to pick up on it. (Male diagnosed with lung cancer aged 70–79)

However, as shown below, the deployment of luck could fall flat if it jarred with people’s experiences (including the inevitability of terminality) (cf. McKenzie & Crouch, 2004), or more perniciously, where it functioned as an overt injunction towards compliance:

Participant 32: I got told twice in a week [I’m lucky]. [First] it was the neurologist. I got told, ‘Mr [name], you’re a lucky man. There are five kinds of Parkinson’s and you’ve got the one you’d rather have.’ I thought, ‘Okay. That’s fair enough.’ So I wore that. Then I got to [hospital] a couple of days later and [oncologist] said, ‘Mr [name], I’ve good and bad news. The bad news is you’ve got lung cancer and the good news is it’s confined to the lungs, so there is a small chance we may be able to do something with it.’ So twice in a week I was told that I was a lucky man. <laughter>

I: . . . Did you feel lucky? Not really?

P 32: No . . . What are you supposed to feel? . . . What will be, will be. No point in rallying against it [cancer] . . . People would ask me about my diet and one thing or another and I’d say, ‘French vanilla slices and beer.’ <laughter> They kept on asking me if I was losing weight. For Christ’s sake, look at me. I’ve swollen up like a bloody balloon.

I: Is that what the oncologists asked?

P 32: About the weight, yeah. They’re deathly concerned about my weight [sarcastic tone]. (Male diagnosed with lung cancer aged 70–79)

Here, the narrative/normative work of serendipity was revealed in what this participant read as a laughable invocation of luck in relation to the dual diagnosis of lung cancer and Parkinson’s disease. The subsequent medical emphasis on certain aspects of this participant’s health (e.g. diet) subtly encouraged compliance with normative patient-hood. This account, whilst somewhat unusual in that he had two ‘terminal’ prognoses in a short period of time, begins unravelling luck as a collective agreement wherein the explanatory power of serendipity is secured by a moral obligation to uphold the normative order. His bristling against normative enactments of serendipity casts a conspiratorial light on the general consensus of cancer survivorship. That is, to re-establish order in a life disrupted by cancer, sense must be made of the occurrence of disease. A narrative cosmology, personalised to the individual but of general applicability, is thus enacted, collectively agreed upon (by formal and informal carers), and the path ahead, revealed (survivorship, even against the odds). Within this cosmology, certain dispositions and forms of action are valued (e.g. positivity, fortitude) while others (nihilism) are pathologised, differentially realising the cancer subject’s moral selfhood.

Positivity, nihilism and the moral order

Another series of logics evident across the interviews concerned specific normative corollaries of the sense-making work of serendipity. In particular, these were the roles of positivity, willpower and fortitude in ‘fighting the good fight’ (cf. Frank, 2003), the dangers of ‘dwelling’, the threat of nihilism, and the precarity of upholding cosmic and moral order in living-with disease. There is a vast, albeit contradictory scholarship on the role of positivity, attitude and wilfulness in the field of cancer and more generally within illness, healing and recovery (e.g. Zenger et al., 2010). Guided by our interest in the ontological politics (cf. Mol, 1999) of disease, our approach was to explore how such ideas and emotions circulate relationality, and moreover, what their productive and disciplinary effects might be in the lives of those living with cancer. Building on previous work (e.g. Bell, 2010; Frank, 2003; Stacey, 1997), we move beyond the performativity of positivity (and related hopeful affects), to examine more nuanced ways in which luck, hope and possibility were deployed, as well as their (often concealed) negative affects, which we examine below. Participants’ accounts illustrated the dissonance between the logic of chance, in which cancer and cure were seen as (amoral) statistical regularities, and the entrepreneurial management of self in which doing and being the right thing/way (i.e. maintaining positivity, upholding fortitude, persevering) could secure the right future (i.e. survival):

Participant 41: I asked [medical oncologist] there one day and I said, ’Well, what’s my chances of surviving?’ and she said, ‘With the cancer you’ve got 15 out of 100 will survive.’ My opinion is I’m one of the 15. That’s the way I see it. So that’s how I’m going . . . I’ve always been a positive person and I never let things get me down too much, no. (Male diagnosed with lung cancer aged 60–69)

For some participants, as above, the forewarning of death that cancer heralded was a welcome planning opportunity. Yet, as presented below, the acceptance of eventual death is coupled with a disavowal of sickness, subtly tying this participant’s longer-than-expected survival to the enactment of a particular way of being (i.e. not ‘sick’):

Participant 6: Death doesn’t bother me at all . . . because everybody will die at some stage. At least they have warning. I say to the kids, ‘I could be hit by a bus, you’ve got no warning.’ They are prepared. They were prepared two and a half years ago. I was told I had six months, less than six months to live and I’m two and a half years down from that. Look, I’m positive . . . A lot of people, I suppose, when they see me, I don’t think people believe I’ve got cancer. They say I look well, I act well . . . I don’t have a sick mentality. (Female diagnosed with breast cancer aged 60–69)

Participants articulated a range of logics that complicate the facile equivalence between positivity, hope and survival. Some participants professed ambivalence about death, or, as below, were comfortably resigned to the inevitability of death, yet maintained ongoing commitment to the moral injunctions of normative survivorship, for example an aversion to ‘dwelling’. This emerged across interviews, especially patient–carer dyads, where participants often gave disparate characterisations of maintaining positive affect:

Participant 31: . . . I don’t think I’ve ever really asked what my life expectancy was . . . I’m 69 and as far as I’m concerned that’s a good lifespan. If I carked it tonight I wouldn’t care less. It’s just the way I go <laughter> . . . I’ve had a good life . . . We all cope with it and we all just get on with what we’re doing. You don’t dwell on it. You never dwell on it.

I: What would happen if you dwelled on it?

P 31: I think you’d get sicker. You’d get so psycho that you’d just go crazy, I suppose. (Male diagnosed with lung cancer aged 60–69)

Carer to Participant 31: . . . He used to be able to talk to me, where he couldn’t talk to family, close, like son and daughters and things like that. I remember him saying to me one day, ‘The pain is so bad. If it didn’t mean disgrace for the family I think I would go out and shoot myself’. . . (Wife and carer to male diagnosed with lung cancer aged 60–69)

Some participants drew quick equivalences between failing to maximise on luck by enacting positivity, and abandoning normative social expectations entirely. One participant explained his trajectory from diagnosis through to maintaining an upbeat outlook, while his partner (interviewed separately) articulated an equivalence between failing to uphold this positivity and ‘throwing it all in’:

Participant 30: I realised what the prognosis is . . . but the way I’ve always looked at it is they say around 3% will live for five years, but 80% have got 18 months to two years is a life expectancy from diagnosis to death. Some people might look at it as, geez, that’s bad, but I’m going to be one of the 3%. That’s the way I’ve always looked at it. There’s 3% of people that go to five years, well, I’m going to be one of the 3% and that’s just how it is . . . where I look at it is there’s always an upside to a downside . . . [later] I suppose because I’m always a glass half full person. I’ve never been a glass half empty, ever. It’s just the way I look at life . . . (Male diagnosed with brain cancer aged 50–59)

Carer to Participant 30: You’ve got to continue and hope that something is around the corner. Like I said, you may as well just throw yourself under a bus and that’s it. Dig the hole and . . .[trails off]

I: Throw yourself into it.

Carer to P 30: Yeah. You’ve got to keep fighting. Continue to fight. Some days it’s teary, some days it’s not. Some days I have a bit of a cry, but you’ve got to keep going . . . you pull yourself together and away you go again. (Wife and carer to male diagnosed with brain cancer aged 50–59)

The dissonance between the cold logic of quantified survival chances and the moral injunction to find the ‘upside’ presented a moral and mortal threat – in moments when participants could not make cancer make sense, and restore vision of an ordered moral universe, they often veered towards nihilism and quickly abdicated their commitment to social existence wholesale, expressed variously as ‘throwing in the towel’ or ‘throwing yourself under a bus’. The luck narrative thus helped reconstruct cosmic order; of life and the world making sense again. This often expanded to a ‘good enough life’, and not dwelling on the disorder of things. Yet, in another layer of normative complexity, excessive positivity was also characterised as a threat – as the following example illustrates:

Participant 34: . . . when the doctors come in and tell you that you maybe have three months to live it’s almost like it’s out of your hands then.

I: Have they actually said ‘three months to live’?

P 34: Yeah. If I don’t have the radiation and chemo I have between three and six months to live. So it was a lot to take in. I think I was still in shock at that stage. But I dealt with it all. It was a very interesting experience . . . I was always really appreciative of things anyway and lived very simply. I’m quite a spiritual person anyway, but I think it’s made me probably be more in tune, the reality of how precious life is. We get a bit complacent. I think it’s changed me in that way . . . This is what I had to endure after the hospital, them [doctors and family] thinking I was manic . . . (Female diagnosed with brain cancer aged 50–59)

Carer to Participant 34: Yeah. At the very beginning it was a lot harder because mum, I guess, came out of the surgery with a really positive outlook on life because she was just thrilled to be here and everything and she was so ecstatic. A lot of people found that really difficult because she was a bit of a different person coming out of it.

I: So talk me through the details in what ways she was different.

Carer to P 34: It’s hard to say positive is a bad thing, but my brother took it very weirdly . . . So mum was just very, very happy to be here . . . people referred to her as manic a bit as well because she was so full on with a lot of things . . . But that settled down after a while and that was good, and she’s pretty much back to normal now . . . We’re still very aware of the fact that her cancer is terminal. (Daughter and carer to female diagnosed with brain cancer aged 50–59, emphasis added)

Here we see the multifaceted disciplinary functions of positivity; the requirement to perform appropriate positivity within clinical encounters as a form of coercion, and the expectation of appropriate affect and disposition in relation to informal carers, family and friends. Similarly, as illustrated below, there was an acute sense of the importance of performing the appropriate disposition vis-a-vis the backstage ³ of affective relations:

Participant 51: I really want to make sure I maintain a positive approach to the whole scenario. Even going up there to the radiation thing, the girls on the counter . . . said, ‘It’s a pleasure when you come up here. Everyone else is in a downer and whether you’re just coming to the counter to us you give us a boost, if you go and sit in the waiting room or we listen to you all you do is you just liven them all up.’ I said to her, ‘Look, I really appreciate the positive feedback because as you’d understand there’s no use me coming in here and whingeing that I had a shit night and I was spewing or anything like that. Who wants to hear that crap?’ I really do try and maintain a real positive approach to everything. (Male diagnosed with brain cancer aged 50–59, emphasis added)

Carer to Participant 51: The first week or two he didn’t sleep hardly. He’d be waking up crying. That’s a part I found really hard, what to do, what to say. So I just battle on with him. Then all of a sudden somebody must’ve said the right word to him and he changed and went back to his [old self], which we all love that [patient’s name]. So he’s taking it quite good now. But there is days where I can – to me, the way I look at it, I call them, like, a little down day. He tries not to show it and I’ll say something and then he’ll just bite my head off and I’m thinking, ‘What did I say wrong?’ (Wife and carer to male diagnosed with brain cancer aged 50–59)

Here, we note our emphasis is not on the fallacies of these logics, but rather, on their consequences across patients, carers, clinicians and communities. Cancer-as-fortuitous cum cancer-as-opportunity entails a particular enactment of survivorship, as a form of moral obligation; illustrating virtue, capability and tenacity. This moral universe of cancer is productive for the collective, encouraging compliance, stoicism, optimism, etc. Whilst it undoes the biomedical ontology of cancer (i.e. contradicting the purely biophysical origins of disease) it binds subjects into disease-centred recovery nonetheless, giving rise to paradoxes that infuse the cancer milieu: it can make a difference (to exceptional survival), and yet, doesn’t make a difference (how could it, if diseases are separate from the person). Yet, within these paradoxes emerge sentiments that question the fortuitousness of cancer, contradict idealised constructions of cancer subjectivity, and threaten to undermine the collective agreement underpinning the cancer consensus.

Conviction, regret and injustice

Conviction, as Price (2018) aptly states, betrays human complexity, and in this context, the diversity of emotions imbued by cancer and care. It offers, we posit, a blinkered view that keeps one looking forward. Concealed behind the luck–fortuitousness–positivity triad is a series of affective relations that ripple beneath the optimistic surface of contemporary survivorship discourse. These emotions, as Wetherell discusses in her work on affect, can be nebulous, subtle, ambivalent and contradictory, including such things as ‘reluctant optimism, intense indifference or enjoyable melancholy’ (2012, p. 3). One unsettling emotion, in this context, is resentment, which often surfaced in relation to carers (i.e. who may live beyond the person with cancer) or in relation to a pathologised other who would be more deserving of cancer (i.e. horrible or bad people). The narration of luck and the practice of conviction were often interrupted by a somewhat reluctant questioning of relational justice and fairness, which subsequently upended the social contract around productive cancer survivorship citizenship:

Participant 37: Well, I’m someone who’s never been sick, which is ironic, isn’t it? So when you do get sick you get the big one . . . I just wish it [cancer] had have left me alone. There’s quite a few nasty, horrible people in the world. It could easily have attacked them instead of me. On that score I’m a bit narky.

I: People more deserving of . . .

P 37: Yeah, why pick on me when there are so many horrible people in the world? (Female diagnosed with lung cancer aged 60–69).

In another series of dyad interviews, we see the patient’s resentment of having accumulated material comfort for his wife and family, then imagining her being in a future relationship. These excerpts reveal the expectation of strength (from the carer) and a sense of injustice (from the patient), challenging the dominant ideal of living well with cancer. Ideas about resilience, gratitude and dying well are destabilised by more difficult emotions:

Carer to Participant 51: To see such an intelligent person like [name] just crumble . . . I found that was very hard. I tried not to show my emotion . . . Anything I said was wrong. He’s asking, ‘Why me?’ . . . [and] about me, [he said] ‘I won’t be around to enjoy our [life] – and you’ll be with some other man.’ . . . He’ll wake up at 2:00 am or 3:00 am in the morning . . . [Later] He’s always worked to set us up. (Wife and carer to male diagnosed with brain cancer aged 50–59).

Participant 51: . . . all of a sudden you think, psychologically, that you’re going to fall over and [carer’s name] going to share this [home and savings] with someone else at the end of the day. Don’t get me wrong, you don’t want her to be lonely the rest of her life, but that’s the sort of shit that goes through your mind. You work your life right through, get a beautiful joint, house . . . and all of a sudden you think you don’t even get to share it . . . that’s what does go through your head and it does rip you apart. (Male diagnosed with brain cancer aged 50–59)

Again, ‘productive’ survivorship is interrupted by unruly emotions, inflected, below, by an expectation of justice, or idea that somehow affliction can be reconciled with other practices, contributing to the normative social order and other forms of existential equilibrium:

Carer to Participant 64: I go to church . . . ‘Why? You [God] need to give me some reason . . . Why?’ . . . you’re good people and you do all the right things then bad things shouldn’t happen . . . Why is it not these serial rapists and murderers and all these people that are doing the wrong thing, why are they not being struck down by something like this? It’s all the good people. The good dads, the good husbands. And we paid our taxes. (Wife and carer to male diagnosed with brain cancer aged 40–49)

Whether across dyads or in individual interviews, underneath the narration of luck and conviction was a sense of normative dislocation: an estrangement of what is felt from what should be felt (cf. Steinberg, 2015). Cancer did not make sense, and luck became a rejected narrative. These scenarios, and others, upended social expectations by combining seemingly disparate emotions – resignation/elation and refusal/gratitude – which sat in stark contrast to the norm. The ‘wrong’ response is indeed unsettling – for example, that this happened to the ‘wrong person’ (versus someone more ‘deserving’ of disease and death); or, that one can be ecstatic about life while simultaneously dying (versus throwing oneself, with conviction, into a survivorship trajectory or under a bus). In unsettling the usual cosmic and moral order, uncomfortable subjects are often pathologised (e.g. made ‘manic’, ‘unstable’ or ‘resentful’). Illness and affliction thus reveal the moral social order in the ways that patients, professionals and carers respond when the established order is unsettled.