In an extensive review of the literature on the narratives produced by patients,60 a number of genres of writing were identified including books, newspaper articles, personal diaries and letters, and electronic "blogs" posted on the Internet. Some are highly polished "professional" accounts written by professionals such as journalists and were produced with the intention of publication, others are more ephemeral or private in nature. They share some features such as the possible therapeutic value of writing,61 they wish to be an advocate for change usually as the result of unsatisfactory health care services or to be memorialized.
The review focused specifically on those who had an awareness of impending death which makes it relevant to this chapter. The authors concluded that the reasons for these narratives include "the need to make sense oftraumatic events surrounding a diagnosis of potentially terminal disease, subsequent treatment, facing death as the illness progresses together with the encroaching disability and debility, as well as charting the changes in relationships with loved ones, oneself and one's body image. Narrators express the wish to restore everything back to normal, they describe the chaos associated with death and dying, and they explore the quest for meaning that may be found in the experience of serious illness and facing death. There is a clear need for creating and renewing different constructions of self through the illness narrative and to ensure a continuity of self after death."62 An analysis of a professional writer's account of his oral cancer is presented in Textbox 2. This area could benefit from further exploration of the relationship between this form of communication and quality of life outcomes.
Textbox 2. A Narrative Analysis of a Personal Written Account of Experiences During Treatment for Oral Cancer John Diamond, a British broadcaster andjournalist, wrote an account of his experience of oral cancer in a series of articles in The Times newspaper over a period of 4 years, from diagnosis to 1 week before his death. His account provided a narrative of one man's experience of living with cancer. Through writing the articles in the form of a diary he attempted to find meaning in his experiences and according to his brother-in-law, the writing was his method of coping with illness. Crossley63 a health psychologist, undertook a narrative analysis of his articles which she interpreted in the context of the notion of 'therapeutic emplotment'34. Del Vecchio Good et al?4 have argued that oncologists and patients creatively manage time and the patients' experience of illness as part of 'a larger therapeutic story' (p. 855). This serves to highlight particular events and episodes which appear to maintain the possibility of hope. Crossley63 examined Diamond's articles for evidence of his unfolding story. She categorised them into six sequential stages.
1. Pre-cancer: touch wood
In the first article on 14th September 1996, he reported the possibility that his mouth swelling might be cancer but distanced his self.
2. Learning to live in "therapeutic emplotment"
Over the next six months Diamond's articles were full of accounts of various medical and surgical treatments and their associated side effects. His language appeared to be optimistic, with an emphasis on the future expectation that following 6 weeks of daily radiotherapy, and surgery he would achieve full recovery. He was encouraged to live in the "immediacy of treatment" while the future holds the promise of a certainty of outcome (cure).
3. In limbo: holding one's breath
Following treatment, he comes to realise that "the truth is... I still don't know whether I'm cured. Nor will I know for weeks, or months, or possibly years."
This period is some times described as 'watchful waiting' and can be even more stressful than undergoing active medical treatment (Jones and Payne11).
4. Recurrence: "therapeutic emplotment" continued
Ten months after what appeared to be the "end" of treatment, his cancer recurred. Diamond tried to be optimistic in the face of further radical head and neck surgery. He wrote "if the surgeons slash and burn in the right way then I have a reasonable chance of a cure."
5. Through the mirror: the "unspoken narrative"
Following surgery there is evidence that Diamond starts to abandon his previous expectations of cure and gives up his "almost childish belief in the power of modern medicine." However, he consents to chemotherapy which he describes as "stale hell" and some 4 months later another swelling in his neck is confirmed as cancer recurrence.
6. Endings or the end?
The final period of writing is characterized by a lethargy and resignation. Further recurrence and spread to his lungs are responded to by his agreement to a further three courses of chemotherapy but with no optimistic expectations. One week later, he dies in hospital.
This is a tale of one person's experience of oral cancer. As readers we know the outcome, but as Crossley points out in her analysis, Diamond did not. How he engaged with this uncertainty is powerfully revealed in the writing.
(published with permission from Payne et al.4)
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