Att leva med kroppsliga förändringar vid obotlig cancersjukdom med fokus på prostatacancer : ”jag är frisk – bortsett från att jag har cancer som är dödlig, men det är liksom en annan sak”

Sammanfattning: The overall aim of this thesis is to illuminate and describe bodily changes and problems in incurable cancer, with focus on prostate cancer, from the patient’s perspective. The thesis consists of four papers, each of which illuminates various aspects of the phenomenon studied. The study population consisted of 24 participants, three women with different cancer diagnoses in the palliative phase, and 21 men with hormone refractory prostate cancer (HRPC) and skeletal metastases. Data are based on interviews (papers I–IV) and a quality of life questionnaire (paper I). The study design is cross-sectional (papers I–III) and longitudinal (paper IV). Qualitative description, descriptive statistics, phenomenological hermeneutics, and analysis of discourse were used to analyze data. The findings of study I show that the dominating symptoms for the men with HRPC (n=20) were pain and fatigue, and three different variants of each problem were described. The men said that changes in their sex life were not an extensive problem, even if it was scored as such. The symptoms differed in occurrence, extent, and meaning between the men, and were not necessarily experienced as problems. In study II, pain and fatigue were again the most prominent problems in men with HRPC (n=18), but pain and fatigue were seen to have different meanings. Pain was seen as synonymous with cancer. Pain can be alleviated, but it is a threat, both now and in the future, and symbolizes a painful death. Fatigue was viewed as a hindrance in the present. It was experienced as less threatening than pain, but as something that cannot really be changed. Fatigue represents the natural course death will take, as eventually sleep into death. An important finding of study II is that one meaning of bodily problems is to live in a cyclical movement of losing and reclaiming wellness. Understanding, and, to some extent, being in control of, bodily problems makes it possible to experience wellness. When the bodily problems increase or change, or when new problems appear or become a hindrance in the daily life, the experience of being ill returns. The findings of study III show that one meaning of fatigue in patients with cancer in the palliative phase (n=4) is a lived bodily experience of approaching death. This can be understood through the paradox of struggling against fatigue, and hoping to overcome it, yet expecting failure. The body, through fatigue, signals to the person that death is approaching, but the person is not yet “ready”. Paper IV shows that the way two of the men with HRPC talked about the past, present, and future changed during the disease trajectory. In the first interview, the men were open towards both the past and the future, while just before death, their narration was totally dominated by the concrete experience of the illness. The past became the past in the illness and not in life, and the present was flooded with extensive bodily changes. Also, the future had shrunk, although it also had been transferred to beyond death. Pain, fatigue, nausea, and other bodily problems figured largely in this change. This thesis provides important insights into the phenomenon of bodily changes when living with incurable cancer, with focus on prostate cancer. The thesis shows the connection between bodily changes and time, where different bodily changes have different meanings, and meanings seem to change during the illness trajectory (papers I–IV); and bodily changes close to death seem to take “all” time; what is left is the present filled with problems (paper IV). Further, it shows that bodily changes have a great influence on the cyclical movement between losing and reclaiming wellness in incurable cancer (paper II). The clinical implications of the thesis are that alleviation of pain and other bodily problems must be based on the meaning the patient gives the bodily changes taking place. That is, alleviation with the purpose to free time and to facilitate living in wellness as death is approaching.