On waiting,hauntings and surviving: Chronicling life with cancer through solicited diaries

Waiting

Some previous scholarly work has focused on the intersection of affect with temporality in relation to health and illness, especially around the heightened sense of vulnerability emergent from predictive screening (Gillespie, 2012; Sachs, 1995, 1996; Shostak, 2010) and the use of biomarkers to gauge both predisposition to, and remission from, disease (Bell, 2013; Novas & Rose, 2000). Other scholarship has drawn attention to the distinction between ‘objective’ clock time, by which disease progression is clinically assessed, and the ongoing flux of ‘subjective’ time that characterises patients’ experiences of illness (Toombs, 1990). In the context of cancer, some scholars have eloquently elucidated the ‘creepiness’ of cancer (Jain, 2007) and its ‘queer’ temporality (Stacey & Bryson, 2012), whereby the past and future are reconfigured through the prospect of ‘living in prognosis’ (Jain, 2007). However, between past and future, there has been less attention to the dynamics of waiting in the present amidst life-prolonging cancer treatment, and (incurable) survivorship (though see Del Vecchio-Good et al., 1994). The promises and actualities of cancer care – the rapidly evolving possibilities for treatment – mean that waiting in itself has become increasingly important to the lived experience of cancer. The impact of waiting has been an underexplored aspect of the phenomenology of illness and/or affliction. What is waiting in such circumstances; is it 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% who achieve remission; to survive or to not survive; or, to stop waiting and start living? And what can we glean from the broader cultural resistance to waiting in advancing our understanding of contemporary experiences of cancer?

Importantly, waiting does not happen in a somatic or contextual vacuum but rather amidst a cultural, political and economic climate and broader social relation to time (Adam, 1990; Nowotny, 1994; Schweizer, 2008; see also Hage, 2009; Urry, 2012). According to some, the ‘art of waiting’ has become socially and culturally devalued; it is no longer valued as a social practice or form of virtue and is often positioned, instead, as antithetical to the productive self (see Schweizer, 2008). In On Waiting, Schweizer (2008) notes: ‘[t]he 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, in contemporary terms, is enforced passivity, an expulsion from the ‘productive’ citizenry, where the passage of time, uninterrupted, recedes into background of the taken-for-granted. Unlike uncertainty, which entails an epistemological orientation towards knowledge, waiting is an embodied and social practice, which infuses our unconscious affect and pervades questions around expectation, expertise and authority (Adam, 1990, p. 122). In cancer, waiting to see what ‘it’ does renders disease a discrete biophysical process, distinguishable from self. Waiting calls into question the boundaries between persons, disease, affect and expertise. The phenomenology of waiting, then, is subsumed within (and offers challenges to) logics about the course of disease, pathology, intentionality and inevitability; it is disciplined, operates within structures of power and authority, and captures forms of agency and resistance evident in the everyday (cf. Foucault, 1977; see also Hage, 2009). Embedded in, and articulated by, waiting are relational practices of surveillance and domination within the medical milieu, legitimate (and illegitimate) claims to knowledge, truth and the course of things/disease. Waiting is thus a personal and interpersonal struggle with the discursive atmosphere of expertise and authority, truth and fallacy, sickness and wellness, hope and hopelessness, being and becoming.

Clinical hauntings

Waiting as a social practice occupies the clinical, the embodied, the affective and intuitive; but is simultaneously informed, occupied, even possessed itself. In this sense Avery Gordon’s (2008, 2011) work on hauntings helps illuminate the affective dynamics produced by and in disease, and in relation to clinical authority. She describes her approach to hauntings as such:

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. … 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. (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 then the next becomes impossible, when the present seamlessly becoming the future gets entirely jammed up. … Haunting … refers to this socio-political-psychological 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 below, Gordon’s elaboration of hauntings is eerily pertinent to the experience of incurability in cancer. The spectre of disease, as it were, makes its presence known; yet knowledge of its existence is embedded in structures of biomedical expertise and authority. Cancer-as-a-lived-experience often jars with cancer-as-a-clinically-known-biophysical-process, especially where incurable diagnoses and terminal prognostications of oncologists sit in tension with the hopeful anticipations of their patients (Kenny et al., under review). Here, the notion of hauntings draws attention to the modes of knowing, which in oncology include a range of techniques of visualisation and surveillance. As we explore below, waiting with surveillance often entails a juxtaposition of embodied experience and clinical expertise – a form of biomedical haunting of and in the everyday – that 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 life/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 waiting and (clinical) hauntings through a temporal methodology, which reveals the tussles between normative influences over time, and between moments in illness, wellness and care.

Data collection and sample

The use of diaries as a means of collecting data is an established methodological tool (Broom & Tovey, 2008; Elliott, 1997; Jones, 2000; Zimmerman & Wieder, 1977). While researcher journals have long been an accepted source of qualitative data for health research (Jacelon & Imperio, 2005; Jones, 2000), they are less often used in the social sciences (though see Broom & Tovey, 2008; Broom et al., 2014, 2015). In contrast to in-depth interviews or focus groups, the format of maintaining a solicited diary encourages the participant to focus on daily activities and upon reflections she or he values. Although diaries may lack the dialogical complexities and probing allowed in verbal communication, they also allow an examination of seemingly mundane day-to-day thoughts, processes and undulations (Elliott, 1997; Zimmerman & Wieder, 1977). This method has been used in feminist research to access the content of daily life for women and to transcend the potential artificiality and power dynamics of face-to-face interviews (see Hampsten, 1989). A significant benefit of personal diaries is the temporal insight they offer, allowing for flexibility and variation in the narratives presented (Meth, 2003). Solicited diaries may also offer empowerment for participants. Indeed, our participants often commented that maintaining the diary was a useful experience, offering pause for reflection and expression of emotions (Meth, 2003).

This article draws on solicited diaries which constituted one component of a broader research programme on cancer survivorship. Ethics approval was gained through a large metropolitan hospital. In an earlier phase of our research we undertook 80 interviews with people living with cancer. Of those we interviewed, we asked 23 participants to complete a hard copy, paper-based diary over one month. In selecting people to take part we aimed to capture some degree of spread according to cancer type, gender (7 women; 8 men) and age (42–75 years), although the priority was exploring the insights of those living in the in-between of clinical categorisations (i.e. neither clearly curative nor palliative). Fifteen participants completed and returned their diary; eight participants either discontinued for reasons of ill-health, discomfort, did not send the diary back, or died during the diary phase. Diaries were returned by mail, de-identified and transcribed in full, and participants were informed and thanked via phone when we received the returned diary. Excerpts are here identified by pseudonym, cancer type and age bracket in order to preserve anonymity. On average, participants wrote 3000 words (ranging up to 6000+). While many themes explored through the diary questions are continuous with aims of the broader study, this article reports on data exclusively from the solicited diaries. Figure 1 shows the diary template and instructions, Figure 2 contains the diary questions, which were posed daily over the course of the month. Through the diaries we sought to explore such questions as: How does cancer shape 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 (evolving) social relationships? How are clinical interactions, knowledge and expertise experienced and what are the implications therein?

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Figure 1.

Diary template and instructions to participants.

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Figure 2.

Diary questions (repeated daily).

Data analysis

The methodology for this project draws on the interpretive traditions within qualitative research. Data analysis was based on four questions adapted from Charmaz’s (1990) approach to social analysis: What is the basis of a particular experience, action, belief, relationship or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief a part? What are the implications of such actions/beliefs for particular actors/institutional forms? We approached the analysis of diaries thematically, systematically reading through each diary, writing notes, discussing ideas with colleagues and noting emerging patterns within the data collected. The analysis was driven by the first two authors (Broom and Kenny), who read through the diaries several times to identify key themes, test their validity and develop them further. We each sought to retain the complexity of the respondents’ experiences, documenting atypical cases, conflicts, and contradictions within the data. Once emerging themes were established, we searched the diaries for related comments, employing constant comparison to develop or complicate these themes further. The final step involved revisiting the literature and seeking out conceptual tools to make sense of the patterns that had emerged from the data.

Terminal entanglements

Across the diaries it was clear that living with advanced and/or incurable cancer fundamentally challenged participants in their everyday lives, offering a mix of contradictory and constantly changing emotions and experiences. One 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’ while also trying to ‘take one’s mind off’ cancer, as Audrey, in her diary, reflects on below. 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:

The waiting–transcending dialectic dominates Audrey’s narrative, illustrating the tension between waiting for future clinical prognostic updates (which promise either good news and relief or bad news and greater anxiety), while 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 positive’ by ‘put[ting] it out of your mind’.

The difficulty of ‘forgetting’ cancer and the omnipresence of clinical prognostications was articulated by Jack, for whom a future PET (positron emission tomography) scan was ‘hanging over him’, not allowing him to ‘get away from’ his cancer:

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 prognosis. Waiting provoked anxiety, with impending scans an ever-present reminder of the presence (and progression) of their disease.

For some participants, like Ellen, cancer was ‘present’ only through her treatments; she experienced no symptoms or pain and her cancer had no visible or recognisable presence. For Ellen, the spectre of cancer followed her home from the halls of the hospital. Her appointments thus functioned as a revisiting, reminding her of her fate and her own mortality:

For Ellen, the experience of cancer was defined, in part, by the absence of any physical symptoms of cancer, which she equated, primarily, with pain or impairment. Instead, hospital appointments, scans and the logistics of care dominated her experience. We note that it is not our purpose to dismiss the clinical encounter, nor the potency of oncological technologies of visualisations. Instead, we wish to highlight how expertise can be enabling/disabling, helpful/disruptive, contributing to the complex mix of desires and emotions that circulate around cancer. 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 ‘always there’ and its interruption of just being (see Sinding et al., 2002). This participant-led critique was about more than the disenfranchisement of advanced cancer – disease ‘caught too late’, people with few ‘hopes for survival’ – but rather about surviving (or more accurately living) amidst the (affective and biophysical) circulation of disease, oncological encounters and care. In this sense, biomedical surveillance offered a ghostly presence – a clinical haunting – of the everyday, raising questions around what it is doing (growing/shrinking), positioning cancer as separate from the person, and requiring constant engagement of biomedical expertise as its progression was anticipated from appointment to appointment. One response to this set of tensions was to seek out normalcy; to live one’s life alongside cancer.

Normality and normativity

Each of 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:

The challenges of finding a way to live with cancer were accompanied, for many participants, by struggles around how to prevail over it, if not at the somatic level then at the register of normativity. As is the case with many forms of disease or affliction, living with cancer entailed struggles over virtue, honour, being a ‘successful’ subject of terminal or advanced disease (Steinberg, 2015) and finding an idealised ‘normal’ between vigilance and worry (Sinding & Gray, 2005). 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 articulates these dilemmas around ‘fighting’ and the difficulties of goal-setting and living in his (usual) disciplined fashion:

While seeking normalcy and ‘finding 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. Thus Karl expresses the desire to ‘provide’ for his family despite the uncertain course of his cancer:

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-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 (actual or anticipated) 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 often 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, forms of suffering in cancer as illness experience. For several of the participants, the central struggle was assessing whether life was indeed worth living in the context of the side-effects of these emerging (targeted) interventions. Often perpetual, unexpected and certainly debilitating treatment side-effects raised daily questions about the purpose of life and the dynamic of waiting (and suffering) therein, especially when the option of simply waiting for treatment to end – for their cancer to be ‘cured’ – was foreclosed:

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 another form of haunting – a persistent reminder of disease and the associated (and often ever-changing) affective entanglement with cancer (fight it, accept it, avoid it, forget it, and so on). Here we note a symptomological ambiguity; a collapsing of cancer/symptom/side-effect into a singular multi-headed ghost. But the pain and discomfort of everyday life under treatment also served as an ontological and relational battleground. 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 – 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 background, waiting itself took on various affective alignments. For Des, below, waiting is inflected at once with the hope that things will get better and with frustration at the enduring nature of treatment side-effects:

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/symptom/side-effect 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.