Radiotherapy regimes place exceptional burdens on patients (1). Complying with strict regimes of personal hygiene (e.g. washing with unperfumed products) and bodily rearrangement (e.g. attending with a full bladder and empty rectum) can induce stress and inconvenience (8). Studies that have gathered patient experiences of radiotherapy have described anguish related to body image, lack of control, social isolation, a lack of social support, mystification and self-criticism (9-11). Frequently, outward experiences of side effects are presented as ‘necessary suffering’ (9) hampering attempts to understand what can be done offer adequate support.

Reported quality of life for this group of patients significantly worsens as patients experience side effects, improving once transient effects begin to improve (12). Depending on the site and delivery of treament, side effects can include psychosocial and physical symptoms including depression, anxiety, fear of dying, fatigue, pain, bladder dysfunction and irritation, inflammation of the rectum, narrowing of the vaginal opening, weakening of the vaginal walls, infertility, and premature menopause (2). Cancer-related fatigue affects over half women treated with a higher proportion in cervical cancer, followed by ovarian cancer (6). It is a distressing symptom that interferes with an individual’s ability to carry out daily activities (13), negatively affecting mood and quality of life (14) and can lead to anxiety and depression (6). The radiotherapy can cause the skin on the genitals and pelvic region to appear and feel sunburned (with erythema and dry and moist desquamation) for more than six months following treatment. In addition, it has been found that treatment procedures have significant effects on sexual health, body image, gender role functioning (femininity), sexual functioning and fertility (3).

Although advances in technological treatment techniques are being made, developments in holistically supporting the patient have not kept pace and new treatments are often associated with a range of adverse physiological and psychological side effects (15). The ability for women to express their sexual interests and preferences is crucial to their mental health and for many women is compromised through the process of being a gynaecological cancer patient (7). Such experiences are influenced by complex relationships to various intersectional qualities including age, race and ethnicity, dis/ability, gender and sexuality (4, 5). Despite this, and as a consequence of the technological drive in radiotherapy, the patient voice has been silenced and technology driven culture has been found to negatively affect the quality of interactions between radiotherapy staff and their patients (16).

In 2016 / 2017, radiation therapist and researcher, Rachel Harris, described her experiences of being ‘on the other side of the [radiotherapy treatment machine]’ (17). Other insights into cancer experiences are available, such as Trish Greenhalgh and Liz Riordan’s recent descriptions of breast cancer (18) and through influential sociological studies, inspired by authors’ own cancer experiences (19-21). However, unlike (17) and (18), these rarely include a focus on the demands of radiotherapy treatment, tending to highlight chemotherapy burdens or impacts of diagnosis.

This project aims to explore affective forces, ‘visceral forces beneath, alongside, or generally other than conscious knowing’ (22). They are a crucial component of one’s sense of self, of how we know and value our lives. Being hard if not impossible to articulate, quantify, measure, or compare in ‘weight’ to other values such as physical and social, they are often silenced, ignored, or ‘othered’ through decision-making processes. However, they are precisely what often has most significance and meaning in patient decisions and experiences of all aspects of life including illness and care (23).

Personal narratives have the ‘power to illustrate and illuminate’ the complexity of embodied interactions (24), illustrating the personal, powerful and transient forms of experience (24) through emphatic witnessing(25) of traditionally ‘silenced’ voices. Weaving together biographical threads, for example, resilience, forbearance and humour, needed to sustain identities through periods of discomfort, distress or uncertainty (26), the narrative approach affords the ‘assembly of life episodes’ (27). Widely used in studies of chronic illness (28-30), these studies have been successful in making public issues out of private experiences and shifting policy (31). The telling of illness stories affords a therapeutic effect and provides a means of maintaining control and autonomy during periods of treatment or medical engagement that can prompt feelings of helplessness and alienation due to institutional appropriation of the patient body (20, 31). In the context of radiotherapy, information based on personal experience is valued by future patients (32).

Analysis of the 2012 National Radiotherapy Patient Experience Survey concluded that improvements should be made to the provision of information given to patients in dealing with side effects, along with annual reviews of patient experiences (33). Building on recommendations from previous research, this project aims to address the hole in understanding patient experiences of radiotherapy advancement. It will gather narratives of radiotherapy encounters, creating opportunities for patients to express contemporaneous experiences, showing affective forces, complexities and subtleties of illness experiences, rather than retrospective quality of life interviews or end of treatment interviews, which can be biased by feelings of inevitability and relief (8, 26, 34-45).

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