A ‘new normal’: Exploring the disruption of a poor prognostic cancer diagnosis using interviews and participant-produced photographs

Abstract

Cancer survival is increasing, and many people are living years after cancer treatment. For example, it is predicted that 46 per cent of men and 56 per cent of women diagnosed in 2007 in England and Wales will survive their cancer for 5 years or more. However, 'survivors' may be living with significant physical, psychological and social disruption caused by their illness. Furthermore, huge disparities exist in the outcomes for different cancer 'types', and there has been little investigation of those living with 'poor prognostic' cancers. Our aim was to explore the experience of living after the diagnosis of a poor prognostic cancer. Data were gathered from 30 people via interviews and participants' own photographs. Our findings suggest that a full 'recovery' may be impossible after a cancer diagnosis. Such diagnoses will continue to threaten biographical trajectory and self-identity forever. 'Returning to normal' was considered highly important for participants, but a changed normality had to be accepted in which lives were managed carefully and a constant fear of recurrence created liminality and made 'survivorship' ambiguous. Experience was often complicated by the social response associated with cancer that hindered communication and increased isolation. Participant-produced photographs, used here for the first time specifically by a sample of people with poor prognosis cancer, proved to be an acceptable data collection method and have added a poignancy and 'completeness' to the data that have arguably led to a more comprehensive understanding.

A new normal?: Women's experiences of biographical disruption and liminality following treatment for early stage breast cancer

“…Importantly, the narratives suggest that these emotions do not dissipate with the passage of time. The study draws on Bury's (1982) concept of biographical disruption to suggest ongoing disruption to lives and identities during the post-treatment period and supports previous research that highlights difficulties in establishing a new normal (Balmer et al, 2015). However, whilst Balmer et al (2015) suggest that survivorship is experienced as ambiguous by people with poor prognosis cancers, we found similar ambiguity in the narratives of women who had apparently been successfully treated for early breast cancer.…”

“…The study draws on Bury's (1982) concept of biographical disruption to suggest ongoing disruption to lives and identities during the post-treatment period and supports previous research that highlights difficulties in establishing a new normal (Balmer et al, 2015). However, whilst Balmer et al (2015) suggest that survivorship is experienced as ambiguous by people with poor prognosis cancers, we found similar ambiguity in the narratives of women who had apparently been successfully treated for early breast cancer. Happiness and relief at having survived a life-threatening illness were tempered by fear of a possible recurrence which 'ruptures the (usually) taken for granted 'normal' life course' (McKenzie & Crouch, 2004: 140-1).…”

“…However, her unexpected diagnosis had left her feeling that it was not possible to return to life as it was, or anticipated it would be, but instead found herself in an ambiguous, liminal state. This section has shown how biographical disruption is not a finite event but an ongoing process as Balmer et al (2015) suggest. This indicates important differences between the current study and Bury's (1982) original conception of biographical disruption in his study of experiences of diagnosis of a worsening chronic condition (rheumatoid arthritis) that rendered his participants permanently in the sick role.…”

“…In the following section we discuss how breast cancer treatments leave embodied reminders that a return to the 'old normal' self is not possible (Balmer, 2015).…”

“…Bury argues that chronic illness disrupts normality and initiates a process of re-examining expectations for self, daily life, and future hopes and plans. Similarly, a cancer diagnosis can also often be experienced as biographical disruption 4 (Balmer et al, 2015;Liamputtong & Suwankhong, 2015;McKenzie & Crouch, 2004). There are typically no obvious indications of breast cancer other than a lump in the breast tissue found either through selfexamination or breast screening.…”