Abstract
Being diagnosed with a life-limiting illness entails a fundamental reshaping of one's relationship with the future. From ‘bucket lists’ of destinations and experiences to ‘flights of hope’ for experimental or specialised medical care, diagnoses of serious illness are deeply entwined with travel in Australian cultural narratives. In this paper, we draw on a thematic analysis of interviews with cancer patients and their carers to ask what meanings are attached to narratives of travel – whether completed or constrained, imagined or interrupted – in the context of a cancer diagnosis. Focusing on narratives of travel draws attention to themes of disruption, resilience, autonomy and living a meaningful life within the precarious timescape of cancer. Through this analysis of time and travel, we examine how normative expectations of how to live with or beyond cancer can produce tensions, particularly in the uncertain but precariously hopeful landscape of precision cancer treatments.
Introduction
Just as a cancer diagnosis can threaten one's future and therefore one's positioning in time, so too can it compromise one's position in space insofar as it imposes various forms of im/mobility. Even at the most fundamental level of routine treatment, travel to access healthcare services or being ‘laid up’ due to treatment side effects can profoundly shape the experience of living with cancer. Beyond treatment logistics, though, a potentially life-limiting diagnosis of cancer, and subsequent ‘journey’ through treatment, can reconfigure the complex entanglement of meaning, movement and mortality as people contemplate the shifting horizons of their future. In sociological scholarship, the ‘mobilities turn’ has emphasised the importance of considering immobility and mobility as working in dynamic relation with each other, and not merely as each other's opposite. At the same time, cancer's ‘precision turn’ has reconfigured understandings of remission, cure, survival and chronicity, introduced new treatment regimes, and complicated prognostic notions of ‘future-time’.
The landscape of cancer diagnosis, treatment and care has thus shifted in recent years at the new frontiers of precision medicine. Some people's cancer pathways have been reconfigured by potential or actual treatment with precision cancer therapies and the development of a range of new targeted drugs and immunotherapies. Many of these new cancer treatments offer the promise of treatability – beyond what was previously possible – even though an ‘incurable’ prognosis remains. Some treatment regimens now involve cytostatic approaches such as daily tablets alongside or instead of conventional cytotoxic approaches such as chemotherapy or radiation. The ‘precision turn’ has thus reconfigured expectations of what kinds of futures living with cancer may involve, whether that is treatment without chemotherapy or survival without cure (Broom et al., 2022). Emerging and evolving evidence complicates the already tentative role of prognosis in clinical forecasting and everyday experiences of cancer. The cancer landscape is changing, rendering obsolescent or inaccurate the existing road maps and itineraries used to navigate it.
It is in this context of uncertain futures and shifting landscapes that we present this examination of the meaning of mobility and immobility in relation to mortality. Drawing on in-depth interviews with 54 people receiving precision cancer therapies and 28 of their informal carers, this paper explores the relationship between imaginaries of the future, mobility and immobility in the context of a cancer diagnosis through participants’ narratives of travel contemplated, constrained, cancelled or completed.
The COVID-19 pandemic has brought considerations of mortality and mobility – and the connections between the two – much closer to the surface of public attention. Indeed, COVID-19-related restrictions on mobility constituted an additional layer in participants’ experiences and understandings of the significance of im/mobility in the shifting shadows of mortality. The interviews for this study were conducted in Australia during the first two years of the pandemic, which shaped the logistics, dynamics and thematics of the interviews (see Methods for more). Nevertheless, this paper goes beyond the immediate COVID context to focus more broadly on the shifting meanings of travel and mobility – which have particularly strong resonances for the far-flung island nation of Australia – in response to cancer diagnosis and treatment, in this case articulated within the context of COVID-19 travel restrictions. We explore what these travel narratives, imagined futures and associated forms of im/mobility reveal about the existential considerations and normative expectations that shape how people live with cancer – in their bodies, their families and their lives.
Background
Meanings of travel: Identity and autonomy
In Australia – a nation founded on a colonial history of voluntary and involuntary migration and displacement, with continuous if contested ties to an overseas ‘motherland’ – travel has long played a central role in both national and personal identity (Elder, 2007). From intrepid explorers and transported convicts to backpackers and ‘grey nomads’, overseas and domestic travel has shaped the way Australians see themselves, their nation and their heritage (Elder, 2007). In the contemporary Australian context, leisure travel fulfils a wide range of purposes from enjoyable recreation to existential quest (Cohen, 1979; Small, 2016). Travel can function as an escape from social constraints or quotidian routines (White & White, 2004), a rite of passage or response to life transition (Desforges, 2000; White & White, 2004), a means of constructing or representing a self-narrative or identity (Desforges, 2000; Meethan, 2006), of accumulating cultural capital to establish a class position (Munt, 1994) or of locating the self in a ‘broad spectrum of the human experience’ (Harrison, 2003). From an experiential perspective, travel can also be positioned as an act of conspicuous consumption (Urry, 1990) involving a ‘tourist aesthetic’ of embodied (and remembered) pleasure (Harrison, 2003).
Travel's emotional and existential significance extends beyond the time and space of each specific trip. The planning, dreaming and (financial, emotional) investment beforehand and the documenting, recounting and remembering afterwards are integral to the meanings made and shared about travel (Desforges, 2000; Harrison, 2003). The type of travel chosen, the experiences selected, and the memories gathered all offer opportunities to reflect on one's own identity and to actively construct a personal narrative of one's life (Meethan, 2006), potentially re-writing or re-imagining one's future life trajectory. Travel is associated with a sense of (reclaiming) control and autonomy, representing both freedom from the routes and routines that form the ‘daily grind’ of work, family or treatment (Harrison, 2003; Hunter-Jones, 2005) and a sense of freedom to explore new places, to experiment with different temporal rhythms and embodied affectivities (Small, 2016; White & White, 2004). For people living with cancer, travel may represent a means of returning to a sense of normality, rather than an escape from it (Hunter-Jones, 2005). In a variety of ways, then, travel presents an opportunity to ‘stage manage’ (part of) one's own current, and future, biography (Beck & Beck-Gernsheim, 2002) and to actively shape the ‘reflexively organised trajectory of the self’ (Giddens, 1991, p. 85). Connecting these threads of autonomy and identity, the desire to travel can represent an attempt to (re)connect with a more authentic, independent or unencumbered self, outside the obligations and expectations of work, care and – in the context of this study – cancer treatment (Hunter-Jones, 2005). The reality of navigating the logistics of travel and illness, however, may not always live up to the hopes invested in it. While carers of people with serious illnesses might work hard to facilitate their loved one's dreams of travel, respite for themselves through travel can be difficult to achieve and fraught with guilt and anxiety (Hunter-Jones et al., 2023).
While travel thus features centrally in the construction of individual identity and biography, it is also embedded in broader social relations, and encompasses an important relational dimension, as well. In their ethnography of travellers in the Australian Outback, White and White (2004, pp.203–204) note that ‘endings’ was a key motivator for embarking on shared travel, with travel acting as a means of grieving ‘a way of life that had ended’ or rebuilding bonds in response to major life disruptions or the (anticipated) end of good health. Making memories together can be an integral part of travel after diagnosis (Broom et al. 2020). In the face of serious and/or chronic illness, then, both of which can entail a significant lack of control over one's present and future, feelings of identity loss (Charmaz,1983), isolation (Hunter-Jones, 2005) and biographical disruption (Bury, 1982), travel can take on a particular significance in relation to identity and (inter)independence. Within this broader illness context, the particular intersection of mortality and mobility – and what it can tell us about cultural understandings of existential purpose – deserves serious scholarly inquiry (Willson et al., 2018).
Mobility, immobility and mortality: The bucket list
If travel is associated variously with freedom, identity construction and mobility, proximity to the end of life is similarly associated with decreasing mobility and increasing immobility, due to physical incapacity, dwindling social networks and ‘a progressive shrinking of the geographical space within which people move’ (Salazar, 2021, p. 11). Indeed, Salazar notes, ‘total immobility, then, becomes a synonym for death, literally but also figuratively’ (p. 12). Bearing in mind the meanings of travel explored above, life-limiting illness and the threat it presents to mobility become entwined with notions of reduced agency and capacity to determine the remainder of one's life trajectory. The decision to cease or limit travelling (whether freely taken or by necessity) can be a turning point in one's understandings of self and imagined futures. For younger people, increased immobility may represent a move from a restless or adventurous youth to maturity or ‘settling down’ (Desforges, 2000, p. 937). For older people, or for people confronted with a life-limiting diagnosis, increased immobility might signify a shift from capability to frailty (Näre, 2017), from relative autonomy to dependence, decline – even death.
The notion of the bucket list – which has gained increased cultural valence since the release of the 2007 Hollywood movie of the same name – complicates these ideas around mobility and agency at the end of life. A bucket list is commonly understood as a list of experiences or achievements to complete during one's lifetime – a lifetime ‘to do’ list, the completion of which is often equated with life being ‘complete’ before ‘kicking the bucket’ (a colloquial expression for dying). In The Bucket List movie (2007), and in other cultural representations of bucket lists (e.g., the children's book Grandpa Frank's Great Big Bucket List by Jenny Pearson (2022)), proximity to death, whether via the ‘fateful moment’ (Giddens, 1991) of a cancer diagnosis or a more gradual move into old age, brings an increased sense of agency and urgency, instigating a desire to seek out meaningful experiences. This resonates with Knox's study of cancer survivors, for whom the prospect of death becomes the ‘fulcrum to shove against, the backdrop that motivates and mobilizes them in projecting goals’ (Knox, 2020, p. 714). In the relatively sparse scholarly literature specifically addressing the concept of the bucket list, travel dominates as a priority item (Aisporna & Erickson-Hurt, 2019; Periyakoil et al., 2018; Thurnell-Read, 2017; Zascerinska et al., 2024). In The Bucket List movie, the two main characters (played by Jack Nicholson and Morgan Freeman) respond to their diagnoses with terminal cancer by rejecting what is described as ‘experimental treatment’ in favour of embarking on a range of energetic overseas escapades. In the words of Nicholson's character: ‘We can sit here hoping for a miracle in some bullshit science experiment or we can put some moves on!’ Here, the movie alludes to a dilemma that faces many people with advanced cancer, who must make decisions about whether to continue or cease active treatment, to enrol in clinical trials and seek out emerging treatments or to choose a (potentially shorter) life with minimal medical intervention but enhanced opportunities for ‘living’ in the meantime (Gaston & Mitchell, 2005).
To be sure, awareness of a foreshortened lifespan often triggers existential questions around meaning, purpose and identity (Boston et al., 2011). In the words of Jain (2013), ‘prognosis marks the moment one becomes someone who thinks differently about a future, a death, and a life’ (p. 40). A heightened awareness of one's personal mortality may bring ‘an existential urgency to lead a life of purpose’ (Knox, 2020, p. 716). From a healthcare provider's perspective, Periyakoil et al. (2018) suggest that understanding a patient's bucket list can ‘serve as a roadmap’ for providing personalised care, helping to ensure that treatment decisions facilitate patients’ ‘life goals’ and acknowledging ‘the person behind the disease’ (p. 653). However, while potentially useful in facilitating person-centred clinical encounters – especially in palliative care and oncology – bucket lists may also be a manifestation of the normative pressure to maintain productivity and busyness even into the end of life (Darier, 1998; Foster, 2016). Indeed, critiques of the use of bucket lists in this context might usefully draw on criticisms of the productive ageing paradigm as limited and limiting, linked ideologically to neoliberal notions of individualised responsibility and self-optimisation (see e.g., Dillaway & Byrnes, 2009).
As expressions of a complex combination of cultural norms relating to ‘living in the moment’ and ‘making the most of life’, bucket lists are not confined to the sphere of life-limiting illness. Instead, they have become ubiquitous in many spheres – far beyond the cancer scene – co-opted by marketing companies, playing into ideas of ‘FOMO’, conspicuous consumption and lives curated via social media. Travel websites and lifestyle magazines feature ‘summer bucket lists’, ‘Paris bucket lists’ and ‘Halloween bucket lists’, to name but a few examples. Belying the superficiality of these examples, bucket lists can be seen as a form of cultural narrative that has developed as a means of managing societal ‘terror of death’ and broader existential anxieties (Zascerinska et al., 2024, p. 224). Bucket lists, we argue here, have become part of a broader ‘thanatological imagination’ (Penfold-Mounce, 2019) through which non-specialists (that is to say, people who are neither academics nor clinicians) explore and consume ideas of mortality and death. More specifically, for people diagnosed with a life-limiting illness like cancer, or confronting their own proximity to death, the bucket list may also provide a culturally comprehensible framework for thinking through one's own mortality and how to spend one's remaining days.
In this paper, we explore the intersections of mobility, immobility and the future in the context of a cancer diagnosis. Drawing on interviews conducted during the collective – if variously experienced – moment of restricted mobility that was pandemic Australia, we ask what meanings are attached to narratives of travel, whether completed or constrained, imagined or interrupted. And we examine how normative expectations around how to live with or beyond cancer can produce tensions, particularly in the uncertain but precariously hopeful landscape of precision cancer treatments. By exploring the meanings associated with travel after a cancer diagnosis, this paper extends existing sociological considerations of time and temporality in relation to living with cancer (see e.g., Broom et al., 2018; Kenny et al., 2017; Authors, 2017, 2018; Plage & Kirby, 2022), using a spatio-temporal approach (Massey, 1994) to examine the intersection of mobility, mortality and meaning.
Methods
Data collection and sample
This article draws on 132 in-depth, semi-structured interviews with people living with cancer (54) and their caregivers (28), conducted in Australia from March 2020 to August 2021. The interviews were carried out as part of a programme of qualitative research focused on contemporary experiences of cancer care within the era of precision oncology. This qualitative mixed-method programme of research involved a collaboration between social scientists with experience in qualitative research and clinician-researchers across three institutional contexts, with the support of five cancer-related consumer groups.
After gaining ethics approval through a metropolitan hospital on Australia's east coast, potential participants who had sought out, tested for, and/or experienced targeted treatments and/or immunotherapies over the course of their cancer care were approached by a clinician, researcher and/or consumer group organiser to explain the study. If they expressed interest, participants were then contacted via phone to initiate the informed written consent process and to schedule an interview via video call. Forty-four women and 10 men living with cancer, aged between 30 and 79, participated in interviews. This sample included people living with lung (30), neuroendocrine (14), breast (5), ovarian (2) and brain (1) cancer, and melanoma (1) and rare (1) tumours. These participants were asked to nominate a person who had supported them during their cancer experience (e.g., family member or friend) who would be willing to be contacted by researchers. Informed written consent was obtained from 28 caregiver-participants (12 women and 16 men, aged between 18 and 80), who were then also interviewed via video call. Caregivers included spouses (15), adult children (6), parents (2), other relatives (1), friends (3) and one professional support worker (nurse). Follow-up interviews were conducted with 41 of the people living with cancer and nine of the caregivers, approximately six months after their first interview.
Class has been shown to affect people's orientations towards the future (Atkinson, 2013; Wardle & Steptoe, 2003). For example, in a large British cohort study, 50-year-olds in managerial or professional roles were more likely to mention retirement or travel plans than those in other occupational groups when asked about how they imagined their future in 10 years’ time (Weber, 2021). It is therefore important to note that approximately 60% of this study's participants worked in (or had previously worked in) managerial or professional roles (categorised according to the Australian and New Zealand Standard Classification of Occupations (ANZSCO)). Approximately 20% (had) held technical, trade, service or clerical roles (ANZSCO groups 3–5), and 10% worked in sales, as machinery operators or drivers, or as labourers (ANZSCO groups 6–8). The remaining eight participants (10%) were students or retired (with no information about previous employment) and therefore fall outside the ANZSCO categories. While occupational grouping is but one proxy measure for social stratification, these figures suggest the findings presented below are likely to reflect middle- to upper-class temporal positionings. Migration and/or cultural background are also likely to affect the meanings of travel and orientations to the future (see, for example, Zivkovic and Marino, in press, on migrant futures). In this study, the vast majority of participants identified themselves only as ‘Australian’. Eleven participants identified themselves as Australian with an additional cultural background including Aboriginal, British/European, South-East Asian and New Zealand. Four mentioned only their migrant identity. Again, the findings presented below must be interpreted in light of the demographics of the sample.
During the period of data collection for this study (April 2020 to July 2021), the spectre of mortality loomed over much of the globe due to the COVID-19 pandemic. Worldwide, governments instituted lockdowns, border closures and travel restrictions in attempts to limit the spread of the virus, particularly prior to the development of vaccines. In Australia, international borders remained closed to non-citizens and non-resident travellers during the whole data collection period, and further restrictions included mandatory hotel quarantine for all international arrivals and exit visas to leave the country (Stobart & Duckett, 2022). Internally, individual states and territories opened and closed their intrastate borders in response to COVID-19 outbreaks or perceived ‘hotspots’, and at times further restricted domestic travel with distance-based and postcode-based travel limits as well as place-based restrictions (for example ringfenced lockdowns and restrictions on entering certain remote Aboriginal communities). Therefore, while our participants were all subject to international border closures, there was wide variation in their capacity for domestic mobility, depending on their geographic location (locality, state, urban/regional) and the time-point at which they were interviewed (Stobart & Duckett, 2022; Young, 2021). While this context is important for understanding and interpreting the narrated experiences of the participants, this paper focuses more broadly on the cultural meanings of travel and mobility in response to cancer diagnosis, including future and imagined im/mobility, articulated under the shadow of COVID-19 travel restrictions.
Interviews were semi-structured and iteratively explored a range of issues around participants’ lived experience of cancer, treatment and care. Both sets of participants (people living with cancer and their caregivers) were asked about their memories of diagnosis, their thoughts and feelings about treatment options (including testing and clinical trials) and issues around access, cost and value. Discussions were often wide-ranging, incorporating contemporaneous experiences (for example, the impacts of the COVID-19 pandemic on their treatment, plans and home life), elements of life history (for example, their life before cancer, including family history, memories of work and travel), and thoughts about the future. The interviews ranged from 22–127 minutes, were audio-recorded and were later transcribed in full. Participants have been de-identified in this article to protect their anonymity.
Analysis
The methodology for this project draws on the interpretive traditions within qualitative research (e.g., Charmaz, 1990). This involved taking an in-depth exploratory approach to data collection, aimed at documenting the subjective and complex experiences of the participants. The aim was to achieve a detailed understanding of the varying positions adhered to, and to locate these within a spectrum of broader underlying beliefs and/or agendas. An initial thematic analysis was conducted independently by LWV, KK, and AB, who coded the data, wrote notes and subsequently discussed potential themes together as a research team. Within this process, we continually sought to retain the richness of the respondents’ experiences, documenting atypical cases, conflicts and contradictions within the data. During the analysis process, LWV (a qualitative sociologist with expertise in lived experiences of mobility) noted the preponderance of data relating to travel – although this had not been a specific focus of the research project. LWV then undertook a second round of coding and analysis with a specific focus on themes of travel, mobility and immobility. The final step involved revisiting the literature and seeking out conceptual tools that could be employed to make sense of the themes we identified from the data.
Findings
Across the interviews, references to literal and figurative im/mobility abounded in participants’ accounts of their experiences of cancer. Participants described their fears of cancer ‘travelling through the body’ or their hopes that it would remain contained, inert or dormant. Many recounted frequent or lengthy travel to receive treatment or to seek out innovative treatments or trials. Others had already spent their life savings on overseas trips or were making plans to do so. In interviews conducted during localised lockdowns and/or closed Australian borders, many participants described their frustration and isolation due to these restrictions on mobility.
Here, we focus on three key themes relating to cancer and im/mobility. Firstly, we explore how participants deployed metaphors and narratives of travel to express the sense of a life thrown ‘off course’ by a diagnosis. Secondly, we examine the existential urgency of the ‘bucket list’ and how participants’ responses to pandemic restrictions reveal the significance of travel (plans) in the face of approaching mortality. Finally, we discuss how imaginaries of travel and mobility continued to dominate many participants’ visions of the future, despite their restricted mobility in the moment.
‘My life was all mapped out’: Interrupted trajectories of self
Participants’ accounts of their cancer diagnosis were frequently told through a narrative of disrupted travel which played out across the multiple registers of geography, identity and life course. One couple, for example, recalled receiving the call from the doctor while driving towards an anticipated weekend away together: I got a call from the neurologist. It was Sunday morning of the long weekend and he said, ‘Whereabouts are you right now?’ and I said, ‘Oh, we’re just driving to [destination],’ and he said, ‘Well look, I’m sorry, you’re going to have to pull over,’ and I said, ‘Why?’ and he said, ‘Because you’ve got a brain tumour,’ and he said, ‘You could easily have a seizure at any moment.’ And my husband was just listening going, ‘What? What's he saying? Pull over? Why have we got to pull over?’ And I said, ‘Well, what do I do?’ and he said, ‘You’ve got to go straight to a hospital.’ […] And it was just a nightmare from there. (F 51–70, health professional, living with lung cancer and brain metastases) Because the last thing I ever expected was to have bloody cancer. And come on. I was preparing to go travelling. Everything was all organised. I mean, my life was all mapped out. Hang on a minute. And this thing rears its funny, ugly head. (F 51–70, education professional, living with neuroendocrine cancer) So, I remained collected. I didn’t burst into tears or start sobbing and things like that. I was quite collected. So, I think I was still treating it in a very objective way. Oh, I remember thinking, ‘Drat. Bummer. Now I can’t travel. I had travel plans, now I can’t go.’ I think that was the first thought that entered my head. (F 70 + , media professional, living with lung cancer) Well, in March we found out, and in May we had planned a trip to Japan. I had to cancel it right away. Also, we wanted to go in summer to Spain. So, all cancelled, all trips, also for me. Okay, and then came corona though, anyway. We can’t travel. (M 70 + , manager, husband of woman living with lung cancer) I’d only just retired six weeks and I found out. […] I was pissed off because we had plans to go travelling. (M 51–70, labourer, living with lung cancer) We’re just in that part of our lives where we were going to jump in the caravan and do the big trip and all this sort of thing, and now it's on blocks in the shed. (M 70 + , farmer, husband of woman living with neuroendocrine cancer)
‘It's not really life’: Bucket lists interrupted
While a cancer diagnosis could disrupt future plans, resulting in anger and frustration, it could also act as a catalyst, impelling action and the making of future plans. This tension between the two poles of uncertainty and action was powerfully evident across the interviews. A cancer diagnosis could bring about an intense awareness of the brevity of life while also imposing considerable uncertainty, leading people living with cancer to experience a kind of ‘liminality’ (Willig & Wirth, 2018), which can be experienced as a kind of ‘stuckness’ (Straughan et al., 2020) or an uncomfortable suspension within the present. Indeed, many participants recounted responses to their diagnosis that involved a sense of urgency to achieve certain goals or partake in certain experiences: So, I had an urgency to get everything done. So, I’ve always been a person who has gone, ‘Oh, I think I’ll do this. Yeah, let's do it.’ Yeah, I want to build a house. Yeah, let's do it tomorrow. But it made it worse. So, I had to do all the travel, I had to empty my bucket list now, which has kind of driven my partner round the bend. (F 51–70, service manager, living with breast cancer) In the last three years, I think I’ve lived more than a lot of 80-year-olds. There's been some bad experiences. Last year I got sepsis, and we thought I was going to die, and I didn’t. But I’ve seen [natural wonders], I’ve travelled so much, renovated my whole house, I’ve basically ticked off most things from my bucket list, and we’ve [made] memories. I guess, in the normal world, you would struggle to be able to afford holidays, like the ones I’ve been on. And with my husband, with my mother, with my sister, with my brothers, in some ways it's going to sound weird, but cancer has been really good for me. Definitely a lot of negative points, but it's given me the opportunity to live my life at a younger age, rather than waiting for retirement. (F 31–50, ICT professional, living with neuroendocrine cancer) Second wave [of COVID-19 cases] has shut that down. Well, I was meant to be in Canada in April, and I was meant to be in the snow at the end of this month, and now I’m not. So, I’m really worried about dying during COVID without ever having done anything else meaningful. […] Sitting on the couch, watching TV, painting miniatures, doing puzzles, it's not really life. It's not like I’m sad about it, but, well yeah, in some ways I’m sad about it. I want to be out having adventures or doing fun things. (F 31–50, ICT professional, living with neuroendocrine cancer) Like the play, so is life itself: what matters is not how long it is but how well it has been performed. It does not matter when you end. End when you want; just put a good closure on it. (Seneca, in Fantham, 2010) I feel limited. I feel really, really, even more so, because I have such a limited time. […] I was thinking that this would be the time that I would go and take a break and maybe travel and go do some things that I thought that I might do, as you do. […] So I’ve continued working, which wasn’t my plan either. […] Because I’ve been doing it for so long, I just wanted to step away a little bit and get life experiences more than working. […] Yeah, look, maybe, hopefully, next year I can look to step down a bit more. […] I hope so. I really would love to finish off some things that you’ve got on your bucket list type of thing. (F 31–50, human resources manager, living with lung cancer) But I figured, well, if we can travel within Australia, that's fine with me. Just to go and experience something different. And I’ve always been like that. I’ve always wanted to travel and just to see what we’ve got to offer, even in Australia. I’ve got room on my bucket list. (F 51–70, education professional, living with lung cancer)
‘It gives me a reason to keep going’: Resilient futures
In the previous sections, we have explored how participants’ accounts of travel plans – made and constrained – highlight the disruption, uncertainty and lack of control around a cancer diagnosis. The additional layer of COVID-19-related mobility restrictions draws attention to the extent to which travel can become a mechanism by which people living with cancer seek to create existential meaning or to ‘perform well’ their limited remaining life. This close association between travel and ‘living life’ was vividly expressed by one woman living with neuroendocrine cancer, who stated, ‘I get on a plane and I feel like I’m alive’. For this participant, the association between travel and vitality long preceded her diagnosis. Similarly, a woman living with lung cancer explained her life-long passion for travel as an alternative source of ‘purpose and meaning’, given that she did not have children: I want to be engaged in everything and living life to the full. That's why we’ve travelled so much, why I’ve studied so much, why I had to have purpose and meaning of my life because I wasn’t going to have children. So I had to have purpose and meaning in something else. (F 51–70, social/welfare professional, living with lung cancer) Because if we’re not able to travel and do the life, then what's the point? (M 31–50, ICT manager, husband of woman living with neuroendocrine cancer)
In the light of this emphasis on travel and existential purpose, it is perhaps unsurprising that, despite their diagnoses and (at the time of interviews) ongoing travel restrictions, imaginaries of travel and mobility continued to dominate many participants’ visions of the future. For example, when asked about the future, one participant replied: Well, I’m still planning to do my travelling and do all my stuff. I’m not going to change that any way at all yet. Not while I’m feeling as good as I am. […] As soon as the border's open, I’m off and gone. (M 51–70, labourer, living with lung cancer) I’m not entirely sure. It's very hard to have a future when you can’t travel. Travel has always been a big thing for me. (F 51–70, education professional, living with breast cancer) We’ve actually bought a new car and [we’re] talking about getting a new caravan. […] But I’ve got to work. It’d be nice if there was a little money tree out the back but never mind. (M 51–70, trades worker, husband of a woman living with neuroendocrine cancer) The longer I don’t relapse, the more looking ahead, longer term seems like a reasonable thing to do. […] I’d be imprudent now to do something financially which meant I wouldn’t be able to pay for aged care, for example. […] You can’t blow all your money. I’ve already blown enough of it on, ‘This is my last overseas trip ever’ – about 10 in a row! […] Straight after my first chemo, my first treatment, I went to [long list of destinations, including ‘a big bucket list item’]. […] So I haven’t got any money left. (F 51–70, social/welfare professional, living with ovarian cancer) This disease is not going to control me. I am not going to sit still and do nothing. I want to go travel. (F 51–70, service manager, living with breast cancer) Yes. Yes, it is [important to have travel plans]. […] It gives me a reason to keep going. Yeah, it gives me a reason to keep going. (F 51–70, clerical worker, living with neuroendocrine cancer) If you think you’ve only got a shorter time to live, you can go and do a lot of that sort of stuff. A lot of us do, but this is my first year I haven’t travelled overseas. […] It's quite stressful travelling overseas when you’re fatigued. It is actually easier not to do it. But perhaps I needed an external thing to stop me. […] Otherwise, I wouldn’t want to stop. (F 51–70, social/welfare professional, living with ovarian cancer)
Not all participants expressed a desire to endure for/through (more) travel. One participant in particular noted that – because she had travelled extensively prior to her diagnosis – her priority for her future life was to survive long enough to see her children into adulthood: I don’t actually have anything on my bucket list because I’ve had such a good life and I’ve been everywhere. I just want to live long enough to see my kids grow up and live their lives independently. […] I’ve just got to survive. (F 31–50, travel worker, living with lung cancer)
Discussion
In the end-of-life space, the notion of ‘unfinished business’ has been used as a way of understanding people's psychosocial needs as part of end-of-life care (Conlon, 2012; Masterson et al., 2018; Steinhauser et al., 2000) or bereavement care (Klingspon et al., 2015; Yamashita et al., 2017), and in broader considerations of the components of a ‘good death’ (Yun et al., 2018). Two commonly cited elements of unfinished business are ‘unresolved conflict’ and ‘unfulfilled wishes’, both of which are associated with increased depression, distress and/or grief (Masterson et al., 2018; Yamashita et al., 2017). For Steinhauser and colleagues (2000), the notion of unfinished business relates to a desire for a ‘sense of completion in their lives’ (p. 2481). Yamashita and colleagues (2017) note that unfulfilled wishes relating to travel were a significant factor among bereaved families with unfinished business, alongside not having listened/apologised to the person who had died (p. 864).
Beyond the cancer sphere, normative pressures to lead a ‘meaningful’ or ‘full’ life have become encapsulated in the contemporary phenomenon of the bucket list. At its most banal, the bucket list becomes a tired marketing trope, as seen in the endless marketing articles proclaiming the ‘100 cities you must visit before you die’. Entire cities, natural phenomena, even species (think dolphins) become commodified as experiences to ‘tick off’ your life plan. Undoubtedly, a cancer diagnosis brings into sharp focus the question of a meaningful life, or a life lived to the full. It is a ‘fateful moment’, in the words of Anthony Giddens (1991), a turning point in an individual's life plan, in which a person must reassess their future conduct and their self-identity. Indeed, awareness of mortality and an understanding of death as an ending (as opposed to a path to redemption or eternal life) have been positioned by Beck and Beck-Gernsheim as key to understanding the ‘do-it-yourself’ biography of individualisation theory. They note that the ‘compulsion to self-staging and self-responsibility’ (2002, p. 166) can only really be understood in the face of mortality, when reckoning with death as an ‘absolute and irrevocable end’ (p. 167): Only the life that is confronted with itself alone becomes a revolt against its end. […] The thought of death and the experience of dying can kindle or strengthen the pleasure of being alive. […] The sting and the thrill of transience make the moment infinitely precious. The thought of death can also clear the way to freedom. Or anyway, it can call into question all the constructions of the social hierarchy.
In this study, the temporal and normative dislocation of waiting associated with cancer and prognosis (Broom et al. 2018) became entangled in the space-time dislocation of COVID-19 restrictions on travel and other elements of daily living (Caron, 2021). The endless present (and stasis) of a ‘life in lockdown’ collided with the foreshortened future of a life with cancer. Whether from the perspective of someone embroiled in the quotidian immobility of everyday (healthy) routines and obligations of work and care, or in the ‘waiting room’ of cancer treatment (Broom et al., 2018) or the indefinite lockdowns of the COVID-19 pandemic, travel plans represent a form of ‘imaginary mobility, a feeling that one is moving somewhere in one's life’ (Salazar, 2021, p. 12). Conversely, enforced immobility (cancelled travel plans, travel restrictions, debilitating symptoms or side effects) may come to represent a sense of existential stuckness (Straughan et al., 2020) as ‘future aspirations perpetually recede out of reach’ (Salazar, 2021, p.13). Mobility, therefore, has a temporality as well as a socio-spatiality (Massey, 1994), implying a movement forward in time. Implicit in the notion of travel as existentially meaningful is the future-time imaginary of being able to look back at a life ‘well lived’ from the viewpoint of the end of life – of the promise of the future perfect tense, of a life that will have been lived well.
Ethics approval
Royal Brisbane & Women's Hospital Human Research Ethics Committee [Ref No. HREC/2019/QRBW/50345: Precision and the person: A sociological study of therapeutic innovation in cancer care]
Footnotes
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Australian Research Council (grant number DP190100745).
Author biographies
Leah Williams Veazey, ARC DECRA Research Fellow, Sydney Centre for Healthy Societies and the School of Social and Political Sciences, The University of Sydney. She is the author of the book Migrant Mothers in the Digital Age (2021, Routledge) and has published widely in the areas of migration, parenthood, digital cultures, and experiences of health and healthcare. Her research uses qualitative methods, most commonly in-depth interviews, to explore contemporary social experiences, with a focus on the intersections of health, mobility and relational sociology.
Katherine Kenny, Deputy Director of the Sydney Centre for Healthy Societies, and ARC DECRA Senior Research Fellow in the School of Social and Political Sciences, The University of Sydney. Her research draws on social theory and qualitative methodologies to better understand how health and disease, (or illness and wellness) are understood, ‘treated’, experienced and made meaningful in clinical contexts and in everyday life.
Alex Broom, Professor of Sociology in the School of Social and Political Sciences, and Director of the Sydney Centre for Healthy Societies, The University of Sydney. He has published widely in sociology, with a specific interest in health, illness and care. His work takes a person-centred approach, qualitatively exploring the intersections of individual experience and social, political and economic context.