Project background
The original annotated bibliography was submitted to the School of Information Management, Victoria University of Wellington in partial fulfilment of the requirements for the degree of Masters of Library and Information Studies on 12 June 2006. The print version is available at Victoria University Library, Wellington, New Zealand or by emailing the author at nzcancerexperiences@gmail.com.
Copyright
Anyone can copy, distribute and display this work, in whole or part, in any format, providing they, attribute the work appropriately (including at least the following information: author, date, title and (if citing an electronic version of this work, provide a hyperlink to it). Disclaimer
While the information contained on this website has been prepared with due care this bibliography is meant as a guide to published cancer experiences relating to New Zealand. The user should always consult the primary resource for research evidence. The annotations aim to be non-judgemental and mostly non-critical. The author has taken the content of each resource at face value, believing for example, the miracle cures/doctors misdiagnosis and choice of treatments. The resources are included for their value as experiences and should not be used as reliable medical advice. Patricia Burton accepts no responsibility for any damage or loss whatsoever that is incurred as a result of the information presented on this website.
Abstract
Autobiographical cancer experiences reveal vulnerability, strength of character, contain tacit knowledge and provide tangible evidence that people are learning to live with incredible changes to their lives and bodies because of cancer.
This bibliography, in 2006, is the only collection of annotated resources relating to New Zealand about the personal experience after being diagnosed with cancer or caring for someone with cancer. It is not a comprehensive bibliography but an introduction to the social construction of cancer for people within a certain time. The bibliography currently contains 185 annotations. The resources include books, articles, websites and a short film. The authors are from varying ages, cultures and genders. All resources are in English and written from the perspective of a caregiver or cancer patient.
Problem statement
Ideally a person struck by a life threatening illness such as cancer should feel public support, retain equal rights and as much control over their lives as possible. They deserve recognition for who they are as people and what they have endured after being diagnosed with a cancer.
The broad contention of this research is that a person with cancer not only needs to comprehend having cancer, confront their own mortality, seek treatments and live after treatments. They need to overcome - or come to terms with - the social and medical construction of cancer, fabricating unsaid rules, taboos, power structures, public assumptions and alien languages.
Without the insight from the person who has been diagnosed with cancer/cared for someone with cancer, society will not understand how to provide better support for this growing group of people. Without increased discourse about issues surrounding the cancer experience people who are and have experienced cancer can feel isolated, hopeless and marginalised in society.
Aim
To provide an annotated bibliography of published New Zealand cancer experiences. Providing tangible evidence for cancer patients/caregivers that others have gone through similar experiences and learned to live with the physical and emotional changes in their daily lives. The bibliography will assist academic researchers exploring the issues of a person who has been diagnosed with cancer. It will assist the medical profession wanting to identify the health care expectations of a cancer patient/caregiver.
Cancer statistics
24.6 million people live with cancer in the world, approximately 10.9 million people are diagnosed with cancer every year and 6.7 million people die of cancer per year (World Health Organisation and International Union Against Cancer 2003). In New Zealand there are 16,000 people diagnosed with cancer each year and 7,500 people die from cancer each year (New Zealand Ministry of Health 2003). The New Zealand government predicts that by 2011 the amount of people living with cancer will increase to 22,000 (New Zealand Ministry of Health 2005).
The cancer narrative
In New Zealand, the earliest published account of an autobiographical cancer experience is; Go with the tide (Creagh 1968). Before then, discovered in England, is the diary of Alice James, 1892, describing her experiences with breast cancer and also a letter written by Fanny Burney, 1812, about her mastectomy without aesthesia.
The personal, and vulnerable voice makes these narratives rich with human interest and historical value. Roos (1996) highlights the value of the personal narrative being in its context, authenticity without agenda and the telling of a personal life experience. In contrast some argue these narratives may not be such an accurate representation of events. The subjective nature of the narrative is believed to compromise the validity of the story. Falling vulnerable to failing memories and outside influence from an editor/censor/publisher.
However, the flexibility of personal narration means people, other than professional authors or historians can contribute to the cancer discourse. As a cancer narrative it provides a personal perspective of having cancer within a specific social context. A reader can learn from what information is given but also what information is left out. Of most importance, it is a voice of experience.
Why cancer experiences?
The lack of concrete facts about cancer makes it internationally unfathomable. A cancer patient can have one or a number of over 100 different types of cancer (Teeley and Basche 2000, 19). The only known cause being malformed cells which, may have taken five to thirty years to develop before being diagnosed (Allen 1998, 260). There is also no definitive measure of how much carcinogenic activity via environmental/biological influence it takes to create a cancerous cell (Teeley and Basche 2000, 19).
On top of the uncertain knowledge about cancer is the social construction of cancer. Influencing how people experience having cancer, understand/define cancer or perceive their role as a cancer patient. The social constructs exist because tacitly people agree to the 'rules'. In deviating from these rules a person may 'become' heretical and in collective voices can influence change to the social norms. Social construction of cancer involves looking at the social beliefs, social processes and the medical institution.
The social beliefs influence our judgment of a person with cancer. This can lead to, for example, assumptions about how cancer is caused, what kind of person gets cancer or the level it is feared by individuals. Examples in this bibliography reveal beliefs that cancer can be caused by having a child out of wedlock (Jane 1998, 122), or having a type A personality (Gentry 2000, 42). Examples also include a woman avoiding public places after a rhinotomy (Lemaua 2000) and the significant athletic achievements, post treatments, for a testicular cancer survivor (Jeff n.d). These narrations can provide a new perspective on having cancer. They provide evidence that others have lived with the impact and changes cancer can have on a person's sense of self, they act as inspiration and encourage curiosity about the person with cancer.
The social processes influence our understanding/definition of cancer and how societal groups react to a cancer patient. These guide, for example, acceptable ways to die, appropriate forms of treatments and proper communication channels. Examples in this bibliography reveal a daughters euthanasia attempt on her mother (Martin 2002), a patient choosing alternative treatments (Jones 1997) and a cancer patient being protected from the poor prognosis (Creagh 1968). These shared experiences can reduce isolation, verbalise what others with cancer are feeling, increase awareness of discordant processes and encourage positive changes to empower a cancer patient.
The medical institution constructs roles, languages and hierarchies, which influence a person's perspective of cancer and the role they have in becoming well. These influence for example, the perceived role of the medical system, a cancer patient/doctors/nurse and a patients understanding of medical terminology. Examples in this bibliography reveal a cancer patients unknowing involvement in experimental research (Matheson 1989), a patient's frustration over the lack of accountability enforced within the medical system (Selkirk 2000), and a patient challenging the waiting list for treatments when her prognosis stated she would be dead by the treatment date (Moore 2005). These shared experiences can inform the medical professionals of patient needs, inspire challenges to the traditional doctor patient roles and act as a tacit navigation aid through the healthcare system.
Summary
In summary, the resources in this annotated bibliography provide the personal voice of experience while uncovering the social construction of cancer for that person. This can then act as inspiration for others facing cancer or as a historical record of what a person with cancer has endured in the past.
Objectives
The objectives of this annotated bibliography are to:
List a meaningful collection of resources relating to cancer experiences linked to New Zealand.
Provide access to the resources via subject index.
Include a range of formats for people with different physical and intellectual abilities.
Intended audience
This bibliography is primarily for people with cancer of any type and their caregivers. However, it may benefit medical professionals wanting to make improvements to care and academic researchers exploring the issues surrounding a cancer patient.
Scope: subject
Resources are written from a personal perspective of having/caring for someone with cancer.
Each story adds to the cancer discourse about a certain aspect of the medical, social or cultural construction of cancer, for the person, at a certain period of time.
All stories have an authentic voice containing reflective and referential perspective on the issues.
Scope: cancer
The bibliography currently covers the following cancer types: adenocarcinoma, adenosquamous, basal cell, bowel, brain, breast, cervical, chondrosarcoma, chordoma, colon, dermatofibrosarcoma, Ewing's sarcoma, Hodgkin's disease, Hodgkin's lymphoma, leiomyosarcoma, leukaemia, liver, lung, melanoma, multiple myeloma, non Hodgkin's lymphoma, nose, osteoblastic sarcoma, osteosarcoma, ovarian, pancreatic, parotid, prostate, rectum, squamous cell carcinoma, synovial sarcoma, testicular, throat, unnamed cancers and yolk sac germ cell carcinoma.
Scope: time
Cancer diagnosis dates range: 1962 to 2005.
The earliest publication was 1968 but most experiences are after 1980.
Scope: exceptions
Interviews and documentaries were excluded because they interrupted the reflection and referential perspective by expanding on points made by the author. A valuable investigation in the future would be the inclusion of New Zealand related cancer experiences from the medical perspective.
Limitations
Personal narratives about cancer experiences are regularly added to the discourse. This makes it an impossible task to produce a comprehensive annotated bibliography. This bibliography is an introduction to the subject. Difficulty also arises from personal narratives being spread across unrelated disciplines. To keep this project affordable, and of reasonable length, not all lateral sources were reviewed and unindexed cancer society/association newsletters were not searched. Also experiences from the medical perspective would be an interesting inclusion to this bibliography in the future. The author apologises for any resources that may have been missed because of human error.
The following resources have not been listed because of access restrictions:
Through the fire : my encounter with cancer, 1994. Auckland, NZ: A.Cooper. Graeme Cook of Waikoikoi, 1935-1972: Two hands to the plough. 1972. Southland, NZ.
Search strategy
To find resources, queries were conducted on: Te Puna (the National Bibliographic database and Index New Zealand), Australia/New Zealand reference desk (full text database), New Zealand film archive (online catalogue), Newztext (full text database), Google (Internet search engine) and the New Zealand Cancer Society chat-room (to seek suggestions).
Search terms were mostly a combination of relevant keywords however, Library of Congress subject headings were also used. The following are two examples:
Keywords, cancer AND experience AND New Zealand.
Subject heading, Hodgkin's disease patients New Zealand biography.
Items were located either by borrowing from a local library, downloading or interlibrary loan.
The bibliographic sources cover:
Individual books.
Book anthologies: Beating our breasts: Twenty New Zealand women tell their cancer stories (2000), I feel lucky: Interviews and photographs celebrating cancer survivors (1995), Unbreakable spirit:Facing the challenge of cancer in New Zealand (2003),You are not alone (2005).
Individual websites.
Website anthologies: Breast Cancer Network NZ (2006), CanTeen: Supporting young people living with cancer (2006) and Eyes on the prize:Gynaecological cancer support and information (2006).
Articles: Funeralcare:The magazine of the New Zealand profession, Kai tiaki nursing: Nursing New Zealand, Metro, New Idea,New Zealand Woman's Weekly, Next, North and South, NZ Girl (online), Spasifik, Te Karaka: The Ngai Tahu magazine,Third age New Zealand and Women's day.
Newspapers: The press, The dominion and The Nelson evening mail.
Arrangement, annotations & indexes
The author used Endnote to compile this bibliography and works office for formatting. This bibliography has two sections. The first is an alphabetical listing of cancer types, then listed by author. The second is an alphabetical listing of anthologies by title. All resources are cited using Chicago 14th B style.
The annotations are mostly commentary, citing the major concerns of the resource. The annotation mostly follow the following structure; first the name of the person diagnosed with cancer is stated, then the types of cancer, the perspective of the author, overall goal of the source, major concerns of the resource, critical comments about the credibility of the resource, chosen treatments and treatment effects. The final line contains descriptive information displayed as follows: page number (or approximate number of paragraphs)/pages in book/illustration/physical size/ISBN/extra information.
Not all fields will be used in every annotation, only when the information is available. There is sometimes a disparity between the sizes of the annotations compared to similar sized resources. If a smaller piece concentrates on cancer issues, treatments and effects of treatments the annotation will be larger than if it concentrated on cancer issues. Describing treatment types means very specific information, long technical terms and alternative drug names need to be included.
The separate anthology bibliography reduces the need for the extraneous repetition of important information in each resource from the anthology.
There is one alphabetical subject and author index. The terms are mostly refined keywords from each resource. The keywords were refined from the Cancer index (2003). Library of Congress subject headings were not detailed enough for the purposes of this bibliography. Each annotation has an index reference number in the right hand margin above the citation e.g. R10.
References
Allen, Felicity. 1998. Health psychology: Theory and practice. St Leonards, Australia: Allen & Unwin.
Course, Sharon. 2003. Breast cancer doesn't have to mean a death sentence -we're living proof! New
Zealand Woman's Weekly, 31 March, 22 - 25.
Creagh, Robina Viola. 1968. Go with the tide. Wellington: A.H & A.W. Reed.
Gentry, Dorothy. 2000. Each day is a gift. In Beating our breasts:Twenty New Zealand women tell their
breast cancer stories, edited by M. Clark, 40 - 44. Auckland: Cape Catley.
Jane. 1998. Jane. In The unremarkable nipple - a journey with breast cancer, edited by S. McLeod, 120 - 121. Palmerston North: Dunmore
Press.
Roos, J P. 1996. Context, authenticity, referentiality: Back to basics in autobiography. Paper read at Biographical Perspectives on Post-Socialist Societies, 13 - 17 November, at St Petersburg.
Selkirk, John. 2000. Witness reads diary to Gisborne cancer inquiry. The Dominion, 11 April, 10.
Teeley, Peter, and Philip Bashe. 2000. The complete cancer survival guide: Everything you must know and where to go for state of the art
treatment of the 25 most common forms of cancer. New York:Doubleday.