Cancer and Life Beyond It: Patient Testimony as a Contribution to Subjective Evidence

Recent Results Cancer Res. 2021:218:259-274. doi: 10.1007/978-3-030-63749-1_17.

Abstract

Patient narratives are a very valuable literary and medical resource. They transcribe the experience of illness into the life stories of the subject and the author. A serious case of cancer triggers the very individual experience of vulnerability, suffering, dependence, and even contingency in the no longer 'open' future. Even after overcoming cancer, life is never the same again. Writing about one's own experience of cancer is a hermeneutic feat of strength with ethical and aesthetic implications. In the age of personalized and evidence-based medicine, patient narratives offer a particular and necessary supplement to the objectifying medical perspective, since they constitute expressions of subjective evidence. This article is based on the direct experience of cancer by the co-author of the narrative. The long history of her illness is presented chronologically in her own words and has been translated from Italian to English. This is followed by an essay, published here for the first time, on "the life beyond cancer", on the patient's time without tumors and the consequences of therapies and mutilating operations. Our methodological approach is based on Havi Carel's Phenomenology of Illness. The close reading of this pathography focuses on three aspects: (1) the effect and power of words; (2) the passage from wariness to awareness; and (3) the maintenance of personal quality of life during and after cancer.

Keywords: Ambiguity and prognosis; Female voice; Hermeneutic injustice; Informed decision making; Laryngeal carcinoma; Patient autonomy and vulnerability; Patient awareness; Patient narratives; Phenomenology of illness; Subjective evidence; Tracheotomy; Trust and mistrust in doctors; Truth telling in Italy.

MeSH terms

  • Female
  • Humans
  • Neoplasms*
  • Quality of Life*