22 Journal of Pain and Symptom Management Vol. 29 No. 1 January 2005 Special Article Stories of Cancer Pain: A Historical Perspective Michelle Winslow, PhD, Jane Seymour, RGN, PhD, and David Clark, PhD International Observatory on End-of-Life Care (M.W., D.C.), Institute for Health Research, Lancaster University, Lancaster; and Palliative and End-of-Life Care Research Group (J.S.), School of Nursing and Midwifery, University of Sheffield, Sheffield, United Kingdom Abstract This article considers published accounts by people with personal experience of cancer, and cancer pain, from 1945 to the present. These firsthand stories communicate deeply personal truths and understandings—and this is their value. Narratives of cancer can inform and support others with the disease and contribute meaningful knowledge to health professionals about the subjective experience of living with cancer and cancer pain. They also highlight where improvements can be made in health care and serve as a platform from which patients may criticize, expose, petition, support, share, challenge, and call for autonomy. A cancer diagnosis can rupture the life of the person who receives it, but as this article illustrates, inscribing the words of a narrative and revealing experiences to a public audience can bring meaning to a life event which might otherwise be viewed as meaningless. J Pain Symptom Manage 2005;29:22–31. 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Cancer pain, narratives, patient experience, history Introduction We have plenty of words to describe specific pains: sharp, throbbing, piercing, burning, even dull. But these words do not describe the experience of pain. We lack terms to express what it means to live ‘in’ such pain. Unable to express pain, we come to believe there is nothing to say. Silenced, we become Address reprint requests to: Michelle Winslow, PhD, In- ternational Observatory on End-of-Life Care, Insti- tute for Health Research, Alexandra Square, Lancaster University, Lancaster LA1 4YT, United Kingdom. Accepted for publication: August 16, 2004. 2005 U.S. Cancer Pain Relief Committee 0885-3924/05/$–see front matter Published by Elsevier Inc. All rights reserved. doi:10.1016/j.jpainsymman.2004.08.005 isolated in pain, and the isolation increases the pain. Like the sick feeling that comes with the recog- nition of yourself as ill, there is a pain attached to being in pain. 1 The second half of the 20th century saw major advances in the understanding, identifi- cation, and pharmaceutical management of pain in people with cancer. 2 Yet, to obtain meaningful knowledge of the exceptionally subjective experience of cancer pain—to under- stand “the pain attached to being in pain”— the voice of the sufferer has also to be heard. The problem with this approach, however, as the sociologist and cancer patient, Arthur Frank, has stressed, is that pain is the most difficult aspect of the cancer experience to
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