Writing a blog post on the ‘new normal’, in the middle of the pandemic, when the phrase has been used ad nauseum across the news and social media – it may have you rolling your eyes. Although the phrase has been thrust into our pandemic vocabulary relatively recently, the term the ‘new normal’ has been around for a little while in the world of cancer.  For anyone who has listened to the podcast You, Me and the Big C, the ‘new normal’ may well have a familiar ring to it, and is such a well-known trope that it features as the topic of an episode for the podcast. Within this episode the presenters discuss the vast remit of the new normal, taken to refer to any (of the many) changes to life after diagnosis.

For some this may be life after treatment/cancer whilst for others it will be living with treatment and cancer. Some may find that they continue on with life’s routines with little change but others may feel they have much more to grapple with; coming to terms with altered health status or acquired disability; changes to appearance; renegotiating social roles, identity and relationships; changes to career trajectories and the re-evaluation of expectations, ambitions and future plans and confronting existential stocktakes (Trusson, Pilrick and Roy, 2016; Baker et al., 2016).  The new normal could include new routines, such as taking new medications, adapting diets and lifestyle, and attending follow-up appointments. It might also encompass the ‘watchful wait’ with monitoring and scans, becoming acquainted with health care teams and new forms of embodiment as a person adapts to and lives with changes to body and mind and the impact this has on the sense of who we are and how we relate to and experience the world.

Although what is considered normal will be different for everyone, the desire to return to some kind of normality appears to be a common theme in cancer ‘survivorship’ studies  (Schultze et al., 2020, Baker et al., 2016, Trusson et al., 2016, Bilodeau et al., 2019b). Unfortunately, another common finding from survivorship research is that many people struggle when trying to regain this sense of ‘normal life’ and that there are gaps in long-term support which can leave people to ‘muddle through’ on their own, often feeling abandoned and isolated (Bilodeau et al., 2019a, Ashmore et al., 2020). Moreover, research suggests that achieving what was considered normal pre-diagnosis is not usually an option and for many people finding a new normal is something that must be worked on (Neris et al., 2020).

This breakdown in normalcy has often been framed through the sociological concept of “biographical disruption” which was coined by Michael Bury in the 1980s to describe the disruptive force that chronic illness may exert on a person’s life. According to Bury, chronic illness can disrupt our anticipated life trajectories and our sense of normality, upending the everyday things we take for granted and questioning our sense of self and identity. Although the diagnosis of a chronic illness may be a pivotal event for some, chronic illness is not usually a singularly disruptive experience, rather, the disruption is more often an ongoing process.  In the face of such disruption, individuals draw on a variety of resources and strategies to renegotiate living with chronic illness and attempt to restore normality.

As treatment advances and survival outcomes improve, cancer is increasingly becoming a chronic condition to be lived with, requiring us to pay more attention to these longer-term post-diagnosis transitions and trajectories and the support that may be needed. Supporting people to live well with cancer is therefore an important part of the cancer care pathway but is complicated by the inconsistencies in how these trajectories are understood and talked about.

For example, “living with and beyond cancer” is often used to describe adjusting to and overcoming effects of primary treatment, but it is also a term used more generally to refer to life after diagnosis (Le Boutillier et al., 2019). Similarly, the term ‘survivor’ and the idea of seasons of survivorship (acute, extended and permanent survivorship) has been employed to talk about the different phases and transitions post-diagnosis, but as survivorship research has grown as a scholarly topic, so too have the meanings and definitions (Dyer, 2015). For example, although the survivor identity has proven to be an empowering resource for some from which various psychosocial benefits (self-esteem, stress-related growth, meaning finding) are gained there is a concern that the dominant ‘brand’ of survivorship has been largely defined through the lens of American cultural values and that research has predominantly engaged with White, female survivors of breast cancer, leading to the breast-cancer-isation of survivorship (Bell, 2014, Dyer, 2015). This is said to have resulted in a general framing of survivorship as embodying “themes of personal transformation, heroism and triumphalism, and a sisterhood of survivors”, an ideal that not everyone recognises or identifies with (Dyer, 2015). Mixed feelings towards ‘survivorship’ terminology were evident at a UK National Cancer Survivorship Initiative (NCSI) workshop, where people who were affected by cancer were asked to vote for their preferred term (Rees, 2018). The workshop found that 42% of people voted for the term “living with and beyond cancer”, 36% chose “survivorship” and the remaining 22% was split between “life after cancer”, “cancer rehabilitation” and “none of the above” (Rees, 2018). Despite this, “survivor” remains the badge used by healthcare professionals and charitable organisations to bridge these differing trajectory terms.

At first glance, it seems that the ‘new normal’ could be a reassuring phrase to quell and allay anxieties for those navigating the new and unknown in post-diagnosis landscapes. There is something of a comfort in being reassured that the things we might have once considered alien will soon be incorporated as a familiar, if not mundane feature of daily life. The ‘new normal’ may even help us to claim and to normalise new routines and identities. Just as the ‘survivor identity’ has been seen to confer psychosocial benefits to some who embrace it (Dyer, 2015), perhaps the new normal can also be a powerful resource for “coming out” types of experiences?

However, although the disruption and chaos that cancer often brings may, reasonably, invoke a wish to return to normal, we should be attentive to the unintended consequences that ‘new normal’ narratives might pose. Is there a risk that if the new normal is applied to everything post-diagnoses that it may lose its sense of meaning? We must be wary that it doesn’t become used in such a way that it creates vague impressions of what a person ought to expect or put up with, for example, with long-term side effects or new/recurring symptoms. The new normal might also create expectations or anticipations around a new phase of post-diagnosis life, signifying that a person has transitioned into a stage of survivorship where they are expected to put their negative feelings behind them despite the “ongoing presence of cancer” in their lives (Rees, 2018). In this way, attempts at living life “as normal” which minimise the experience of illness may produce a space in which talking about cancer becomes difficult, off limits or taboo, or which requires a person to work hard at maintaining the illusion of normalcy. Such social practices run the risk of producing sanitised or socially desirable versions of the new normal from which people may feel excluded whilst also inhibiting important processes of personal storytelling (Frank, 1995). There is perhaps a risk then that the new normal soundbite may gloss over or silence the hidden or less visible aspects of living with cancer, and could potentially produce harmful assumptions about what constitutes normal, especially when it comes to more taboo subjects.

References

ASHMORE, L. A., STEWART, H., HUTTON, D. & EVANS, K. 2020. Digital support for living with and beyond gynaecological cancer. Radiography (Lond).

BAKER, P., BEESLEY, H., FLETCHER, I., ABLETT, J., HOLCOMBE, C. & SALMON, P. 2016. ‘Getting back to normal’ or ‘a new type of normal’? A qualitative study of patients’ responses to the existential threat of cancer. Eur J Cancer Care (Engl), 25, 180-9.

BELL, K. 2014. The breast-cancer-ization of cancer survivorship: Implications for experiences of the disease. Social Science & Medicine, 110, 56-63.

BILODEAU, K., TREMBLAY, D. & DURAND, M. J. 2019a. Gaps and delays in survivorship care in the return-to-work pathway for survivors of breast cancer-a qualitative study. Curr Oncol, 26, e414-e417.

BILODEAU, K., TREMBLAY, D. & DURAND, M. J. 2019b. Return to work after breast cancer treatments: Rebuilding everything despite feeling “in-between”. Eur J Oncol Nurs, 41, 165-172.

BURY, M. 1982. Chronic Illness as Biographical Disruption Sociology of Health and Illness., 4 (2), 167-182.

DYER, K. E. 2015. “Surviving is not the same as living”: cancer and Sobrevivencia in Puerto Rico. Soc Sci Med, 132, 20-9.

FRANK, A. W. 1995. The wounded storyteller: Body, illness, and ethics., Chicago and London, The University of Chicago Press.

LE BOUTILLIER, C., ARCHER, S., BARRY, C., KING, A., MANSFIELD, L. & URCH, C. 2019. Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis. Psychooncology, 28, 948-959.

NERIS, R. R., LEITE, A., NASCIMENTO, L. C., GARCIA-VIVAR, C. & ZAGO, M. M. F. 2020. “What I was and what I am”: A qualitative study of survivors’ experience of urological cancer. Eur J Oncol Nurs, 44, 101692.

REES, S. 2018. A qualitative exploration of the meaning of the term “survivor” to young women living with a history of breast cancer. Eur J Cancer Care (Engl), 27, e12847.

SCHULTZE, M., MULLER-NORDHORN, J. & HOLMBERG, C. 2020. Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany. Sociology of health and illness., 42, 1359.

TRUSSON, D., PILNICK, A. & ROY, S. 2016. A new normal?: Women’s experiences of biographical disruption and liminality following treatment for early stage breast cancer. Soc Sci Med, 151, 121-9.