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).

References
1.   Baumann BC, Zeng C, Freedman GM, Verginadis II, MacArthur KM, Lin LL, et al. Avoiding antiperspirants during breast radiation therapy: Myth or sound advice? Radiotherapy and Oncology. 2017;124(2):204-7.
2.   Grigsby PW, Russell A, Bruner D, Eifel P, Koh W-J, Spanos W, et al. Late injury of cancer therapy on the female reproductive tract. International Journal of Radiation Oncology* Biology* Physics. 1995;31(5):1281-99.
3.   Bodurka DC, Sun CC. Sexual function after gynecologic cancer. Obstetrics and Gynecology Clinics. 2006;33(4):621-30.
4.   Taylor ET, Bryson MK. Cancer’s Margins: Trans* and Gender Nonconforming People’s Access to Knowledge, Experiences of Cancer Health, and Decision-Making. LGBT health. 2016;3(1):79-89.
5.   Agénor M, Krieger N, Austin SB, Haneuse S, Gottlieb BR. At the intersection of sexual orientation, race/ethnicity, and cervical cancer screening: assessing Pap test use disparities by sex of sexual partners among black, Latina, and white US women. Social science & medicine. 2014;116:110-8.
6.   Sekse RJT, Hufthammer KO, Vika ME. Fatigue and quality of life in women treated for various types of gynaecological cancers: a cross‐sectional study. Journal of clinical nursing. 2015;24(3-4):546-55.
7.   Pfaendler KS, Wenzel L, Mechanic MB, Penner KR. Cervical cancer survivorship: long-term quality of life and social support. Clinical therapeutics. 2015;37(1):39-48.
8.   Appleton L, Flynn M. Searching for the new normal: Exploring the role of language and metaphors in becoming a cancer survivor. European Journal of Oncology Nursing. 2014;18(4):378-84.
9.   Muniz RM, Zago MMF. The oncologic radiotherapy experience for patients: a poison-drug. Revista latino-americana de enfermagem. 2008;16(6):998-1004.
10. Schnur JB, Ouellette SC, Bovbjerg DH, Montgomery GH. Breast cancer patients’ experience of external-beam radiotherapy. Qualitative health research. 2009;19(5):668-76.
11. Larsson M, Hedelin B, Athlin E. Needing a hand to hold: Lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nursing. 2007;30(4):324-34.
12. Fang P, Tan KS, Grover S, McFadien MK, Troxel AB, Lin L. Psychosocial encounters correlates with higher patient-reported functional quality of life in gynecological cancer patients receiving radiotherapy. Radiation oncology. 2015;10(1):34.
13. Curt GA, Breitbart W, Cella D, Groopman JE, Horning SJ, Itri LM, et al. Impact of cancer-related fatigue on the lives of patients: new findings from the Fatigue Coalition. The oncologist. 2000;5(5):353-60.
14. Stone PC, Minton O. Cancer-related fatigue. European journal of cancer. 2008;44(8):1097-104.
15. Devin JL, Sax AT, Hughes GI, Jenkins DG, Aitken JF, Chambers SK, et al. The influence of high-intensity compared with moderate-intensity exercise training on cardiorespiratory fitness and body composition in colorectal cancer survivors: a randomised controlled trial. Journal of cancer survivorship. 2016;10(3):467-79.
16. Merchant S, O’Connor M, Halkett G. Time, space and technology in radiotherapy departments: how do these factors impact on patients’ experiences of radiotherapy? European journal of cancer care. 2017;26(2).
17. Harris R. On the Other Side of the Linac: Society of Radiographers; 2017 [updated February 28, 2017. Available from: www.sor.org/news/other-side-linac
18. Greenhalgh T, O’Riordan L. The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control. London: Vermilion; 2018.
19. Sontag S. Illness as Metaphor. London: Allen Lane; 1979.
20. Frank AW. The Wounded Storyteller. Chicago, IL: University of Chicago Press.; 1995.
21. Stacey J. Teratologies. A Cultural Study of Cancer. London: Routledge; 1997.
22. Gregg M, Seigworth GJ. The affect theory reader: Duke University Press; 2010.
23. Duff C. On the role of affect and practice in the production of place. Environment and Planning: Society and Space. 2010;28:881-95.
24. Thomas C. Sociologies of Disability and Illness. Basingstoke: Palgrave Macmillan; 2007.
25. Kleinman A. The illness narratives: Suffering, healing, and the human condition: Basic books; 1988.
26. Thomas C. Cancer narratives and methodological uncertainties. Qualitative Research, 8(3), pp. 423-433. Qualitative Research. 2008;8(3):423-33.
27. Birch M. Reconstructing research narratives: Self and sociologcial identity in alternative settings. 1998.
28. Ellingson LL, Buzzanell PM. Listening to women’s narratives of breast cancer treatment: A feminist approach to patient satisfaction with physician-patient communication. Health Communication. 1999;11(2):153-83.
29. Cepeda MS, Chapman CR, Miranda N, Sanchez R, Rodriguez CH, Restrepo AE, et al. Emotional disclosure through patient narrative may improve pain and well-being: results of a randomized controlled trial in patients with cancer pain. Journal of pain and symptom management. 2008;35(6):623-31.
30. Hedestig O, Sandman P-O, Tomic R, Widmark A. Living after radical prostatectomy for localized prostate cancer. A qualitative analysis of patient narratives. Acta Oncologica. 2005;44(7):679-86.
31. Frank AW. The standpoint of storyteller. Qualitative health research. 2000;10(3):354-65.
32. Boulton M, Adams E, Horne A, Durrant L, Rose P, Watson E. A qualitative study of cancer survivors’ responses to information on the long‐term and late effects of pelvic radiotherapy 1–11 years post treatment. European journal of cancer care. 2015;24(5):734-47.
33. Tomlinson M, Samuels L, Murphy T, James S, Beardmore C. A review of the results from the National Radiotherapy Patient Experience Survey in England. Radiography. 2014;20(3):217-22.
34. Keim-Malpass J, Baernholdt M, Erickson JM, Ropka ME, Schroen AT, Steeves RH. Blogging through cancer: Young women’s persistent problems shared online. Cancer nursing. 2013;36(2):163-72.
35. Pitts V. Illness and Internet empowerment: writing and reading breast cancer in cyberspace. Health:. 2004;8(1):33-59.
36. Korfage IJ, Hak T, de Koning HJ, Essink-Bot M-L. Patients’ perceptions of the side-effects of prostate cancer treatment—a qualitative interview study. Social science & medicine. 2006;63(4):911-9.
37. Hutton D. A feasibility study for the introduction of micro-enema to improve organ consistency in patients receiving radiotherapy for urinary bladder cancer. Journal of Radiotherapy in Practice. In press.
38. Hutton D, Leadbetter J, Jain P, Baker A. Does one size fit all? Adaptive radiotherapy for bladder cancer: A feasibility study. Radiography. 2013;19(1):17-22.
39. Wood L. Conceptualising decadent technology: a case study of path dependence in radiotherapy. Science as Culture. 2015;24(4):507-25.
40. Wood LA. Experimental subjects and partial truth telling during technological change in radiotherapy. Nursing ethics. 2017;24(4):441-51.
41. Bingley AF, McDermott E, Thomas C, Payne S, Seymour JE, Clark D. Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases. Palliative Medicine. 2006;20(3):183-95.
42. Thomas C. Negotiating the contested terrain of narrative methods in illness contexts. Sociology of health & illness. 2010;32(4):647-60.
43. Thomas C, Reeve J, Bingley A, Brown J, Payne S, Lynch T. Narrative research methods in palliative care contexts: two case studies. Journal of pain and symptom management. 2009;37(5):788-96.
44. Appleton L, Wyatt D, Perkins E, Parker C, Crane J, Jones A, et al. The impact of prostate cancer on men’s everyday life. European journal of cancer care. 2015;24(1):1365-2354.
45. Appleton L, Perkins E. The construction of help during radiotherapy: Redefining informal care. Psycho‐Oncology. 2017:1099-611.
46. Thomas C. Parents and Family: Disabled Women’s Stories About Their Childhood Experiences. In: Robertson C, Stalker K, editors. Growing up with disability. London: Jessica Kingsley; 1998.
47. Grinyer A. The narrative correspondence method: What a follow-up study can tell us about the longer term effect on participants in emotionally demanding research. Qualitative Health Research. 2004;14(10):1326-41.
48. Milligan C. Placing narrative correspondence in the geographer’s toolbox: insights from care research in New Zealand. New Zealand Geographer. 2005;61(3):213-24.
49. Gubrium JF, Holstein JA. Narrative practice and the coherence of personal stories. The sociological quarterly. 1998;39(1):163-87.
50. Morse JM. Determining sample size. Sage Publications Sage CA: Thousand Oaks, CA; 2000.
51. Gubrium JF, Holstein JA. Biographical work and new ethnography. Interpreting experience: The narrative study of lives. 1995;3:45-58.