The concept of total pain was first described in the 1964 publication Care of patients suffering from terminal illness at St Joseph’s Hospice, by Cicely Saunders. Saunders, previously a nurse and then social worker, qualified as a doctor in 1957 and began working as a research fellow in two homes for the dying, which shaped her interest in complex pain. For Saunders, the purpose of the total pain concept was to raise awareness that there were other forms of pain (than purely physical) shaping people’s end-of-life experiences, including emotional, social, and spiritual components. These are commonly entangled, creating ‘a whole overwhelming experience’ for patients (Wood, 2022, p. 411), or in the words of one patient she often referenced, ‘it seems that all of me is wrong’ (Ibid: viii). Crucially, the concept of total pain developed from Saunders’ interest in patients’ social, emotional, and spiritual lives, and emerged through her – sometimes brief, sometimes in-depth – conversations with patients. It was also shaped through her deep religious convictions, and a wide range of literary sources, including existential philosophers (Clark, 2018).

By listening to and sharing patients’ words and stories, Saunders believed that the individuality and subjectivity of each person could offer insights into the end of life, while also emphasizing each patient’s unique situation, circumstances, hopes, worries, and experiences of distress and suffering. In turn, the need to address total pain became a central responsibility of the emerging field of end-of-life care and remains a foundational ideal of contemporary palliative and hospice care. For example, the World Health Organization defines palliative care as a practice ‘to improve the quality of life of patients and their families whether physical, psychological, social, or spiritual’ (World Health Organization, 2023: np). In Norway the components of total pain – and the need for holistic care to address them – are also referenced in policy documents such as the Norwegian Official Reports (NOU, 2017, p. 16) and the first Norwegian White Paper on Palliative Care (St. Meld. 24 (2019–2020)).

Saunders’ ideas were heavily influenced by her work with terminally ill cancer patients, and therefore there is unsurprisingly a significant body of literature exploring total pain in cancer patients (e.g., Ahmedzai and Boland, 2007; Brant, 2017; Mehta and Chan, 2008; Middleton-Green, 2008; Shute, 2013; Strang, 1997). The concept, however, has not yet been applied to cancer survivorship. We believe that extending the concept to people who have successfully finished cancer treatment may have significant benefits to understanding common embodied experiences in cancer survivorship, particularly in the first few years, and which we now detail further.

When Saunders first introduced the concept of total pain, cancer was one of the most feared diseases of the 20th century due to its ‘insidious onset and potentially devastating outcomes’ (Robb et al., 2014). At that time medical oncology included surgery, chemo- and radiotherapy; more recently, hormonal treatment, targeted therapy, and immunotherapy have been added. Many of these new treatments have remarkable success, which has led (along with advances in early detection and epidemiological and lifestyle changes) to an overall increase in cancer survivorship, even as the total number of cancer deaths continues to increase due to a largely ageing global population (Lagergren et al., 2019).

In Norway, while age-standardised rates of cancer have remained stable over the last 5 years, the number of cancer cases overall has increased by 20% in the past decade, with the most common forms of cancer being of the prostate, female breast, lung, and colon (Cancer Registry of Norway, 2022). With nearly a quarter of inhabitants aged 60 years or older, this rate is likely to increase. At the same time, nearly three out of four people in Norway survive a cancer diagnosis for 5 years or longer, and for some cancers, nearly everyone survives (Cancer Registry of Norway, 2022).

To be diagnosed with cancer in Norway is to be met with prompt response from health-care services with immediate referral to a cancer patient pathway. These are standard national pathways intended to help patients receive effective, consistent, coordinated, and predictable care (Nilssen et al., 2020). The Norwegian Cancer Society is a powerful third sector organization that also supports an individual’s needs through treatment, as well as advocacy and development of health-care policy for cancer research and treatment options (Norwegian Cancer Society, 2024). Thus, as a cancer patient, one may feel part of a wider ‘community’ of supports along with people who are going through similar experiences. After treatment is complete, depending on the type of cancer and age of the person, there are usually follow-up appointments for the next 3–5 years.

Cancer survivorship is a contested term, with varying lengths of post-treatment parameters (commonly 5–10 years), and some who live through cancer do not identify with the designation (Broom et al., 2019; Surbone et al., 2013). In part this is due to its ‘hero-vanquishing-the-adversary’ narrative and expected norms of a happy ending. As noted by Little et al. (2000) however, ‘[w]e should realize that survival is not simply the end of a story. It is the beginning of another, often very troubled, story’ (p. 502). This concern with what survivorship entails is not new. Almost 40 years ago, in the words of one physician writing about his own experiences of having survived cancer, ‘[i]t was if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all we can’ (Mullan, 1985, p. 273). In this paper, we use the term ‘cancer survivor(ship)’ to acknowledge and bring visibility to the concept, while remaining mindful of the concerns it raises. We also reflect on these complexities as we explore the often intricate lived experiences of individuals after cancer.

Some forms of cancer are increasingly viewed as a chronic illness, with people often living for many years or decades after their initial diagnosis. People who have been successfully treated for cancer also identify numerous – often serious and debilitating – side effects from both their cancer and cancer therapies. One study found more than 25,000 publications on PubMed about the acute side effects of all cancer treatments, both during and after treatment (Lagergren et al., 2019). Many of these side effects can have long-term impact on physical, emotional, social, and spiritual wellbeing.

For example, cancer-related fatigue is one of the most common complaints of cancer patients. Fatigue often becomes chronic, extending for years into the cancer survivorship period, along with feelings of exhaustion and lack of concentration (Fitch et al., 2019; Lagergren et al., 2019; Ueland et al., 2021a). Daily functional limitations for cancer survivors may be as high as 70%, which is twice the rate for those never diagnosed with cancer (Patel et al., 2023). Other common issues include chronic pain along with diabetes, kidney and liver failure, neuropathy, lymphedema, autoimmune disorders, and infertility; as well as other physical and cognitive impairments and disabilities (Ellingson and Borofka, 2018; Hardy et al., 2018; Shapiro et al., 2018). With new therapies also come new symptoms and side effects that can cause significant health and functional impact, such as heart failure and musculoskeletal dysfunction (Lagergren et al., 2019).

Physiological and affective concerns commonly co-present. For example, one large-scale Canadian study of more than 13,000 cancer survivors (1–3 years post-treatment, various cancers) found that 87% were experiencing at least one physical concern (most commonly fatigue, change in sexual function, change in memory/concentration, and nerve problems), 78% at least one emotional concern (most commonly anxiety about cancer recurrence, depression, sadness, and loss of interest in daily activities, and decreased sexual intimacy), and 44% experienced at least one practical concern in relation to post-cancer transitioning (most commonly returning to work, getting to appointments, and health care costs), with the average number of concerns reported for each domain ranging from 2 to 3.8 (Fitch et al., 2019). While they did not discuss any connection between the domains, the study authors found that many respondents were not receiving the kind of help that would ease their transition and recovery after cancer. These issues are reflected in many other studies, which have found that between 30 and 50% of cancer survivors experience emotional and physical distress significant enough to warrant professional intervention sometime during the survivorship period, including but not limited to depression, anxiety, and sleep problems, and even post-traumatic stress disorder (Ellingson and Borofka, 2018; Knox, 2018; Swartzman et al., 2017).

It is important not to collapse all issues that people who have successfully been treated for cancer may face as suffering. Many cancer survivors, including those with long-term symptoms report a high quality of life and a sense of personal resilience (Costanzo et al., 2009; Ellingson and Borofka, 2018; Fitch et al., 2019). At the same time, ‘[c]ontrary to common assumptions, surviving cancer does not automatically eliminate physical, psychological, or existential suffering’ (Knox, 2020, p. 62). As part of this awareness, there is a growing body of literature on the lived experience in cancer survivorship, often focused on the transitional period; a period usually defined by survival estimates of different types of cancer. The findings of these studies highlight that during this period of post-cancer survivorship issues are not necessarily divisible into physical, emotional, social, or spiritual concerns but rather encompass the entirety of a person’s lived experience including sense of self, personal relationships and social roles, and meaning-making capacities (Ellingson and Borofka, 2018; Little et al., 2000; Surbone et al., 2013; Ueland et al., 2020; Ueland et al., 2021a). Within this research many cancer survivors have not yet transitioned into a new identity, yet also feel ‘significantly different’ from their pre-cancer selves, often accompanied by existential ambivalences from awareness of diminished capacities, loss of opportunities, and threat to one’s overall existence (Ueland et al., 2021a). Most cancer survivors wish to return to a similar life they had before being affected by cancer, even if this is no longer possible. As a cancer survivor, bodily capacity can no longer be taken-for-granted and trustworthy, and survivors describe fundamental alterations to sense of self. Relationships may alter dramatically, or alternatively, family and friends may resume pre-cancer ways of being that enhance cancer survivors’ feelings of isolation and loneliness. The future is uncertain, where cancer survivors are required to face a new reality shaped by the ambivalence of being ‘cured’ yet also at risk of further recurrence and/or heightened health challenges. In short, the integrity of the ‘whole self’ is fundamentally threatened as a result of a fundamental disruption of the person’s previous lifeworld (Ueland et al., 2020; Vehling and Philipp, 2018).

These studies illuminate how living through successful cancer treatment requires the person to face a new reality of living which may include being situated within a liminal space of uncertainty, attempting to find a new normal in everyday life, while experiencing difficulties in family functioning and communication, concerns for returning to work or school, and fear of cancer recurrence, as well as the loss of previous identity and sense of self, changed relational intimacies, and capacity to make meaning (Broom et al., 2019; Ellingson and Borofka, 2018; Knox, 2020; Ueland et al., 2020; Ueland et al., 2021a). Consequently, the resultant combination of side effects and late term effects of cancer treatment can both create and further physical, cognitive, emotional, relational, sexual, financial, social and/or existential distress, resulting in a whole overwhelming experience of suffering. These experiences can therefore result in a paradigm sheer rather than a paradigm shift, where cancer and treatment experiences disrupt continuity of self, relationships, and time in radical and fundamental ways. In the extreme, this can result in some cancer survivors questioning if the life they are left worth is really worth living (Knox, 2020).

Collectively, this literature highlights that the lived experiences of cancer survivors: (1) commonly includes a liminal (transitional) period, which (2) requires attending to both their individual embodied experiences and their social relations, and (3) can result in multifaceted suffering. These are the same concerns which gave rise to the concept of total pain. While total pain has traditionally been limited to the entanglement of physical, emotional, social and/or spiritual concerns specific to the end of life, we believe there is utility in applying the concept to cancer survivorship. Cancer survivorship is not the death of the person, yet it does engender a form of death of the old self and ending of known ways of being. Additionally, as total pain encompasses the relational aspects of suffering rather than locating it solely within the individual, the concept is useful to understand how cancer survivors are necessarily embedded within webs of relationships and collectivities, including medical practices and social norms. Finally, we believe the concept of total pain is a useful concept to interpret experiences of cancer survivorship as it focuses on both the importance and limitations of articulating embodied experiences. Some suffering resists being fully communicable. Within a total pain framing, communicating experiences of suffering can take many shapes, from lengthy and coherent narratives to evocative fragments that may point to that which is silent, wordless, or nonverbal (Wood, 2022).

Previous studies have identified the ways in which cancer survivors may experience radical changes to the sense of self, in part due to new - and sometimes significant - limitations in daily life (Ellingson and Borofka, 2018; Hvidt, 2017; Knox, 2018; Little et al., 2000). We found this to be the same in our study. For example, one participant, Anders, talked about how after treatment for colon cancer ‘I suffer nearly every day’ from stomach pains and cramps, as well as with sleep problems and reduced memory. He reports that his life is now ‘directed by the stomach and the stoma’. Synne, another participant who had been told that she was cancer free, said the news left her feeling ‘completely drained and empty; life is flat’ where ‘moments of joy seldom occur’. While she wanted to do something other than work, she said ‘I disappoint myself. Why do I not do something? …I should have used more of my time and energy to build a life…I spend all my energy at work and when I get home, I just feel drained. I cannot manage’. This was in contrast to her description of herself pre-cancer, as ‘full of energy and living an active life’. Peter, a participant who required a colostomy, when talking about intimacy with his wife stated ‘We are finished with that. Life has changed’. For another participant, Ingrid, she noted the change to her sense of self quite clearly, stating that while her time after treatment has been ‘very good’ it has also been ‘absolutely terrible. Because I’m not me anymore. That person is gone. Or not all of it, but very much is gone’.

While these participants’ self can be framed through a psychosocial lens of adjustment, where cancer survivors are experiencing oversurveillance, anhedonia, depression, or anxiety, these are anemic descriptors which undervalue the real changes to some cancer survivors’ embodied experiences of self and physical capacity. Concerns for the body’s experiences and capacities are not merely about the need for adequate symptom management but are also signifiers of their new limits as embodied selves. This finding is also reflected within literature on the ways in which both cancer and the biomedical treatments to cure it can lead to ‘biographical disruption’ (Hubbard and Forbat, 2012; Trusson et al., 2016), including experiences of liminality, alienation, and even abjection towards the self and the world within which the self is situated (Hvidt, 2017; Ueland et al., 2020). Given their complexity in shaping all aspects of self, these experiences of embodied post-cancer life may resist being fully articulable, as evidenced by Peter’s terse deflection of his sexual life. At the same time, his use of ‘we’ highlights how this changed sense of self is always inextricably entwined with others.

Studies have also reported on the strong sense of isolation and loneliness that many cancer survivors live with, and of ‘bearing the burden alone’, where their experiences of continuing difficulties go unrecognized (Knox, 2020; Raque-Bogdan et al., 2019; Ueland et al., 2021a). In our study, many participants described a major shift from being supported by structured cancer care routines to a post-cancer reality where they felt they had to deal with the long-term effects of the disease and treatments on their own. Participants seemed unprepared for this change, and during the interviews many of them discussed facing a new sense of medical and social indifference now they were cancer ‘free’.

Participant Silje described how, during post-treatment check-ins, she was frequently met with the brusque response that she needed to learn to live with the late effects and her changed body. She recounted health-care professionals’ orientation as ‘That’s the way it is. Goodbye. See in you half a year’. She felt that if she continued to ask questions she was perceived as ‘troublesome’. Another participant Anna also highlighted this sense of health care abandonment, which she described as ‘the feeling of being dropped…and being in deep water’. She asked, ‘Is no one going to talk with me anymore?’ Participant Bente discussed her feelings of how, during follow up appointments, she has the sense that ‘no one sees me’. Yet another participant, Synne – who prepared before going into appointments in order to advocate for herself – still felt invisible. She recounted how she would bring with her a list of questions for the specialist, yet left these consultations without asking them, feeling ‘that there was no room for my issues’. Overall, what many participants shared were feelings of being deprecated by health care professionals after treatment, even as they continued living with ongoing uncertainty concerning their current well-being and future health.

This feeling also extended to family and friends, where some participants felt there was a lack of understanding from those closest to them, and even a sense of ‘silence’, leaving them to deal with these worries alone. For example, Peter recounted that not everyone approved of him talking about his colostomy, so ‘I hide it as much as I can’. Silje, similar to Synne, also spoke about her fatigue, but here the focus was on how it challenged personal connections, in that ‘I do not have energy to meet friends after work’. Yet even if she did have the energy, she felt that ‘One talks about cancer as something you die of or survive. If I start to speak about late effects, people’s response is that I should be thankful for being alive. No one understands what surviving means – very few know about the late effects’.

This sense of abandonment, isolation and feelings of invisibility from clinicians, as well as family, friends, and colleagues are based on assumptions of survivors’ well-being when the cancer treatment comes to a ‘successful’ end. Yet as we saw in the previous section, cancer survivors may be grappling with radical changes due to alterations in physical capacities and sense of self and cannot return to the way things were before. Participants’ bodies and identities had changed through the cancer and treatment, yet these changes were not being confirmed through their relationships. As Ueland et al. (2021a)’s study of cancer survivors found, ‘It is a double suffering. They are a different person from the one they were, whereas in encounters with others, they are seen as they were, which enhances the distance they feel between themselves and others’ (p. 6, emphasis ours). This was also reflected in our study as many participants also described becoming more introverted and passive, spending more time on their own, and even shielding themselves from other people.

Cancer survivors also have alterations in their relationship to past, present, and future, facing uncertainty about future health and abilities in contrast with the taken-for-granted health of the past (Tindle et al., 2019; Ueland et al., 2020). A sense of temporal continuity is one of the taken-for-granted conditions of everyday life, and both cancer and survivorship disrupt this, dividing time into a before and after (Rasmussen and Elverdam, 2007). Cancer’s return remains a constant worry, with awareness of mortality ever-present for many in the early years of cancer survivorship, and living involves facing an uncertain future while longing for a past that is out of reach, all while trying to appreciate the present (Berry-Stoelzle et al., 2020; Simonelli et al., 2017).

Participant Anders recounted this disruption where his cancer, its treatment, and fear of its return combined to create a different temporal rhythm of everyday life, where the aftermath of his surgery and the time waiting between his regular check-ups created ‘a vacuum until the next results come…at varying intervals’. Another participant, Jacob, struggled in trying not to think about his future, even as he thought about it ‘a lot’, where ‘the future I had envisioned will most likely not be like that’. For Jacob, the future is shaped by his current state, where if the cancer returns, he will not seek treatment ‘because it’s so tiring to be the way I am now’. Other participants articulated strong divisions between past, present, and future, such as Ella, who when facing concerns about the possible return of cancer stated, ‘Why take the sorrows in advance?’ and recounted turning down an offer to join a gynecology support group because ‘I do not want to be reminded’. Synne, on the other hand, evidenced absence of thinking about the past, present, or future at all, stating that what she wanted to do most of all was nothing; stating that ‘nothing is the best thing’.

Literature that considers the changed relationship with time in cancer survivorship commonly uses the anthropological concept of liminality (Hansen et al., 2019), where cancer survivors are required to navigate a threshold or boundary between ‘before’ and ‘after’; an ‘in-between’ that marks one state from another, as well as the experiences of being within the in-between. This temporal work of (re)structuring self and place within the world (including social relations) is rarely linear. Surbone et al. (2013) provides a particularly compelling example from a quote in the New York Times from a writer who had been diagnosed and successfully treated for cancer: ‘I’m not a cancer survivor, and neither are the women in my cancer support group…Perhaps we need a word for that murky in-between zone that a number of us inhabit daily’ (2,469, emphasis ours). This is similar to Ueland et al. (2021b)’s findings with cancer survivors where these types of intangible temporal feelings were part of ‘something different, which did not lend itself to classification’ (p. 706).