Chapter 3: A systematic study of cancer stories
3 Exploring cancer using real life stories as a data source
Hundreds of cancer stories were found in the published literature or were posted on the internet, as the previous chapter indicated. Because the quality and reliability of such stories were found to be extremely variable, screening for appropriate data proceeded cautiously. Meaningful images were found within the stories as single words, metaphors, similes or intended silences, posing particular challenges for the hermeneutics.21 Two characteristics of the
stories were identified as needing care: The idiosyncrasy of the stories, and the hegemony of the “war” metaphor.
20 NOTE: Elizabeth MacKinlay modified and conducted Highfield’s Spiritual Health Inventory
(∑=75,) and achieved correlation factors of low significance. Elizabeth B. MacKinlay, The Spiritual Dimension of Ageing (London; Philadelphia, PA: Jessica Kingsley Publishers, 2001), 32.
21 Paal, Written Cancer Narratives: An Ethnomedical Study of Cancer Patients' Thoughts, Emotions and Experiences (Helsinki: University of Helsinki, 2011), 18.
Idiosyncrasy of cancer stories
Dominantly, such cancer narratives found in the published literature are written by professional writers, who themselves experienced cancer and felt a need to publish their story. They provided authentic expression because the storyteller was not constrained to any standardised format of expression. There is a strength in this, because the experience was narrated in the way that the individual wanted and resulted in the truest expression of feelings arising from the impact of the cancer on the person’s life and well-being. However, most published narratives were compromises between what was remembered and the relevant themes deemed important by the author at the time of writing; typically this latter was the desire to offer hope to every reader.22
The majority of the cancer narratives were written by an individual writer who did not write professionally. Often they were incomplete and most likely omitted some of the more painful aspects of the storyteller’s experience. This required the exercise of care in understanding the narrative. What was stated was taken to be true, but the context required discernment. Dell Hymes compared such writing to oral performance in which everyone can tell a story but in so doing few can be entertaining.23 The methodology considered this. People
who habitually maintained journals or diaries, although not professional journalists, provided direct accounts of their cancer experience that were very personal. Indeed their writing continued after the diagnosis of cancer was made,
22 Paal, Written Cancer Narratives: An Ethnomedical Study of Cancer Patients' Thoughts, Emotions and Experiences, 56.
23 Del Hymes, Foundations of Sociolinguistics: An Ethnographic Approach (Philadelphia:
____________________________________________________________________________________ often continued as a form of therapy (narrative therapy) which they integrated into their medical treatment as they worked towards a reordering of their lives.24
Care was taken to maintain proper ethical standards in relation to the privacy and confidentiality of all storytellers.25
Hegemony of war metaphor
The widespread use of metaphors and simile by people narrating their cancer experience was noted in the previous chapter. Whilst being deployed to make the experience meaningful for the patient and the text understandable to others, a metaphor can conceal the full nature of the writer’s individual cancer experience from the researcher. Susan Sontag persistently warned about the poor communication that can result from the metaphor chosen by the narrator or by oncology professionals.26 Typically, the hegemony of the use of the “war”
metaphor by breast cancer patients characterised their descriptions. Cancer is an invading enemy with intention to occupy and eventually kill the patient; the treatments of surgery, radiation and chemotherapy are all weapons used to destroy this enemy and the medical staff are to be the heroes. Successfully treated patients are happy to describe themselves as survivors! But what of
24 Paal, Written Cancer Narratives: An Ethnomedical Study of Cancer Patients' Thoughts, Emotions and Experiences, 13;
Teucher, "The Therapeutic Psychopoetics of Cancer Metaphors: Challenges in Interdisciplinarity", 4; Nelson, Psychology, Religion, and Spirituality, 299.
25 Eysenbach and Till, "Ethical Issues in Qualitative Research on Internet Communities”, 1103-
05.
NOTE: Ethics approval was sought and given by the University of Divinity Human Research Ethics Committee.
those who die? Kristen Garrison describes the poverty of such warlike imagery to help the loved ones of the “cancer victim”, who in this instance was her mother:
Writing an obituary for my mother was so much harder than I would have thought. After all, as "the English major in the family" I accepted the task as soon maybe even before, my dad asked. Describing her life was easy enough. Describing who survived her, was straightforward. But I had no words to describe her death, and I stumbled over, resisted, what dad, my sister, and my aunts finally advised: she lost a four-year battle with cancer. I had most difficulty with the verb. 27
Here Garrison revealed the inadequacy of the war metaphor to express emotion and feelings in any positive sense. To die is failure, to have lost the war and all that remains for the army that has been routed (relatives in this case) is despair and hopelessness. From the perspective of this research too, the exclusive use of metaphor in the patient’s narrative conceals the real experience. Stories that make the narrative personal were preferred in this research. The breast cancer patient who talked about fear of losing a breast, of her hair falling out with their associations of femininity were closer to revealing what the patient was experiencing.28
The use of the war metaphor was found in many cancer stories and was not restricted to breast cancer alone. It stood dominant amongst all the metaphors. Susan Sontag was one of the earliest to publicly identify and
27 Kirsten Garrison. "The Personal Is Rhetorical: War, Protest, and Peace in Breast Cancer
Narratives1”. http://dsq-sds.org/article/view/52/52. [Accessed June 24, 2014].
28Deborah Lupton, Medicine as Culture: Illness, Disease, and the Body in Western Societies
(London: Sage, 2003).
____________________________________________________________________________________ advocate resistance to this feature of the cancer literature in 1979.29 By1990
Sontag’s thinking had become more ambivalent in that she progressed to conceding that thinking about cancer is difficult without a metaphor and that it offered a value but that many of the commonly used metaphors were better avoided30.
In 2003, Ulrich Teucher reported another metaphor, viz. journey that can symbolise chaos and uncertainty much more gently than the war images. It is also a well-used metaphor for the spiritual life and indeed of the “Church” which in contemporary publications is described often as a “Pilgrim People”. Journey references are found in the Old and New Testaments of the Bible and in first and second century patristic writings.31 The metaphor of the “Church as a pilgrim
people” is foundational to the Lumen Gentium document of Vatican II and was reinforced by John Paul II in Redemptoris Mater.32 Literary references to
pilgrimage are found in Geoffrey Chaucer and in Dante’s Paradiso.33 This
29 Sontag, Illness as Metaphor.
30 Susan Sontag, Aids and Its Metaphors (New York: Anchor, 1990), 93; Martha Stoddard
Holmes, "After Sontag: Reclaiming Metaphor," Genre (2011): 265;
http://www.academia.edu/1080396/After_Sontag_Reclaiming_Metaphor. [Accessed June 25, 2014].
31 Dee Dyas, Pilgrimage in Medieval English Literature 700 – 1500 (Cambridge: Boydell & Brewer
Inc., 2001), 21, 27-8.
32 Vatican Council (2nd: 1962-1965), Lumen Gentium in the Dogmatic Constitution of the Church
(Melbourne: A.C.T.S., 1965), Ch7; John Paul II, "Encyclical Letter Redemptoris Mater of the Supreme Pontiff John Paul II on the Blessed Virgin Mary in the Life of the Pilgrim Church," (Homebush NSW: St Paul Publications, 1987), Ch 2; Castor M. Goliana, Where Are You Africa?: Church and Society in the Mobile Phone Age (Cameroon, Africa: Langaa Research and Publishing, 2011), 162.
33 Geoffrey Chaucer, The Wife of Bath’s Prologue in “The Riverside Chaucer,” (Boston: Houghton
Mifflin,1987), 105-116; Stanley V. Benfell, "Biblical Truth in the Examination Cantos of Dante's
Paradiso," in Dante Studies with the Annual Report of the Dante Society, no. 115 (1997): 108- 09.
metaphor has wide applicability and is much more conducive to well-being than and metaphor derived from war.
Teucher also performed an empirical analysis using standardised questionnaires and including respondents who did not habitually write. He found a cultural dependence in the use of metaphors and that the usage was constructive towards the patients’ sense of well-being. Further he noted that metaphors “can have different meanings for different people, or even different meanings for the same person at different time. For some patients, cancer may be a plague; for others, such metaphors are a plague.” 34 Teucher, cautioned that
language can have many meanings and its use may involve misinterpretation. The reality of the occurrence of different metaphors must be acknowledged and ambiguity was be avoided through the critical selection of the stories that were included in the database for coding. Coding describes the process used to associate a searchable tag with each cancer model identified. Here the term
cancer model was used when coding narratives.