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The Cancer Book Club

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

Eighteen months ago, in an act of grand optimism, I began a creative writing PhD, five and a half years after being diagnosed with metastatic prostate cancer, when I’d been told I could expect five to six years of reasonable health.

As far as I know, there have been no clinical trials on the matter, and I speak with no qualifications other than my own experience, but it seems to me having a strong sense of meaning and purpose can only assist in managing a cancer diagnosis. In that sense I saw the PhD as an act of self-care, to send a message to myself that I needed to hang around for a while yet.

My PhD topic is “Quality of Life issues and the Psycho-social Challenges of Living with a Cancer Diagnosis.” I’m not interested in giving unqualified medical advice. But I am interested in how we manage the often-devastating side effects of treatment and find meaning and joy in our lives while facing this dire challenge.

We all find our own ways to navigate this maze, but one thing that has helped me greatly is reading widely on the subject, perhaps because I am a writer. I don’t mean medical textbooks or clinical studies or even far-fetched, self-published, how-to-beat-cancer manifestos. What I’m primarily interested in is memoir, the intimate experiences of how others have navigated their cancer journey, and even some more spiritual texts on making peace with our mortality.

There are some wonderful cancer memoirs out there, that have helped me feel less alone, from which I’ve plucked various little gems of wisdom that have guided me on my own cancer journey. For me, story is a wonderful way of appreciating our shared humanity, feel connected and a part of a larger human family, and realising that all of us have our struggles, that the cancer patient hasn’t been singled out for a cruel and inhuman fate.

I fully understand that for some people living with cancer, the idea of reading cancer memoirs or other cancer-related literature might be the last thing you feel like doing. Who needs reminding of this mortal threat hanging over us, after all? But for me, it’s given me a broader perspective on my illness than my own firsthand experience. I’m also interested in the language of cancer, and how the ways we talk and write about cancer might impact those of us living with cancer. Personally, I’m not a fan of the battle language and war metaphors that seems to dominate so much of the conversation around cancer. Why does everyone who succumbs to their illness die after “a battle with cancer”? Why do we declare “war on

cancer”? Social media “fuck cancer” memes don’t really feel like meaningful psycho-social support.

The starting point for any exploration of cancer literature I’d suggest is the Pulitzer Prize winning “The Emperor of All Maladies” by Siddhartha Mukherjee. Subtitled “a biography of cancer”, it traces the entire history of modern oncology, and the search for more effective and less toxic treatments. If you feel like your cancer treatment is gruelling (and I’m sure it is), spare a thought for the poor guinea pigs who were in the hands of pioneering cancer researchers in the early to mid 20th century, who seemed convinced that ever more radical surgery, more toxic combinations of multiple chemotherapy drugs and more powerful radiation were the tools that would conquer cancer.

Instead, countless participants in clinical trials were mutilated by drastic surgery that removed ever wider margins around tumours, or died from cocktails of several forms of chemotherapy, and even the health professionals delivering huge doses of radiation began developing cancers. It is a sobering read that will make you grateful for the vast improvements in cancer treatments and a greater focus on quality of life. But it also left me pondering why, in the entire history of oncology, no one appeared to consider the option of radically supporting people’s health during cancer treatment with nutrition, exercise, stress reduction, emotional support. As the twig is bent, so grows the tree.

Among my other favourites is the wonderful “When Breath Becomes Air,” by Paul Kalanithi, an international best seller that follows the author’s journey with stage 4 metastatic lung cancer. Kalanithi, a neurosurgeon, discovers the experience of being a cancer patient challenges his own ideas about medical science. “Science may provide the most useful way to organize empirical, reproduceable data, but its power to do so is predicated on its inability to grasp the most central aspects of human life: hope, fear, love, hate, beauty, envy, honour, weakness, striving, suffering, virtue," he writes in this exquisite memoir that was published posthumously. It’s subtitle, “What makes life worth living in the face of death,” neatly captures his deeply philosophical reflection on mortality, quality of life and the search for meaning when faced with a grim prognosis.

Other favourites include “Dying: A memoir”, by Cory Taylor, “The Undying” by Anne Boyer and “Dying to be Me” by Anita Moorjani. If all this talk of death and dying feels a bit confronting, a couple of classic texts on facing our mortality from a Buddhist perspective have provided particular comfort. Thich Nhat Hanh was a Vietnamese Zen Buddhist monk who died in early 2022 and his 2003 book “No Fear, No Death”, has informed my own efforts to make peace with my mortality. Pema Chodron is an American

Zen Buddhist nun, teacher and author whose book “When Things Fall Apart” provides a profound guide to dealing with grief and adversity.

For those looking for practical advice on managing the emotional challenges of a prostate cancer diagnosis, “Facing the Tiger”, by Prof Suzanne Chambers AO, is the essential guide. Sub-titled “A survivorship guide for men with prostate cancer and their partners,” it delivers compelling, personal case studies and offers hope and comfort to those impacted by a prostate cancer diagnosis, including partners and families. Prof Chambers is Australia’s pre-eminent health psychologist whose approach to the subject is to seek to empower the patient: “The road ahead is yours to travel. Parts of the future may seem clear, some of it will be uncertain, either way it belongs to you. We can’t always choose what comes our way. But we can choose how we respond.”

My current favourite of the genre is a delightful little book entitled “Intoxicated by my Illness,” by Anatole Broyard, a literary critic for the New York Times. Broyard died of prostate cancer in 1990 and this book was published two years later from various writings he left behind. It reveals a man profoundly at peace with his illness, with a black humour and a determination to thumb his nose at cancer and death, while living life to the full. His ability to make light of dire circumstances, all while providing profound insights, is something to behold:

“I would encourage every sick person to evolve a style or develop a voice for his or her illness. In my own case I make fun of my illness. I disparage it. This wasn’t a deliberate decision; the response simply came to me. Adopting a style for your illness is another way of meeting it on your own grounds, of making it a mere character in your narrative.”

Story has been humankind’s key method of interpreting the world around us since time immemorial, so it makes sense that we might turn to story at the most testing of times when meaning can feel more elusive than ever.

References

Boyer, A. The Undying, Allen Lane, 2019

Broyard, A. Intoxicated by my Illness, Ballantine Books, 1992

Chambers, Prof S. Facing The Tiger, Australian Academic Press, 2020 Chödrön, P. When Things Fall Apart: Heart Advice for Difficult Times, Shambahla, 1996

Kalanithi, P. When Breath Becomes Air, Penguin, 2017.

Moorjani, A, Dying To Be Me, Hay House, 2012

Nhan Hanh, T, No Fear No Death, Riverhead, 2003

Taylor, C. Dying: A memoir, Text, 2016


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About the Author

Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include “Occy”, a national bestseller and chosen by the Australia Council as one of “50 Books You can’t Put Down” in 2008, and “The Rip Curl Story” which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.

Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but seven years on, at 57, he’s still surfing, writing, and enjoying being a dad. His latest book, Patting The Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEST).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

 
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