By Tim Baker
Facing tiger, patting shark: No, this is not a new Chinese martial arts film, but an unlikely double act calling for better, integrative, prostate cancer care.
An onco-psychologist and a surf writer walk into a library.
It sounds like the setup to a bad joke, but in reality, it’s just another day on the book promo trail. I was hugely honoured to be joined at the Brisbane Square Library on Saturday by the one and only Prof Suzanne Chambers AO, this country’s pre-eminent authority on prostate cancer survivorship, who literally wrote the text book on the topic (“Facing The Tiger,” Australian academic Press, 2020).
We were here to talk about my own humble contribution to the subject, my new book “Patting The Shark”, and workshop how we achieve better supportive care for men with prostate cancer. Suzanne has worked in this field for decades and her knowledge is deep and wide, and yet perhaps what is most impressive about her, for all her achievements, is her conviction that the voice of the patient must be front and centre in any discussion of the topic.
Patient Centred Care is the benchmark we all want to see but in my own experience, and in talking to and receiving messages from dozens of other men in response to my book, it is clear we still have a long way to go. It is less clear to me why this is proving so difficult to rectify. When administering a treatment like hormone therapy, which is known to quadruple the risk of suicide, reduce bone density and muscle mass, increase the risk of cardiovascular disease and diabetes, and often leads to mood swings, hot flashes, and loss of libido and sexual function, how is it that some supportive therapies aren’t put in place as a part of standard care?
As Suzanne and I took the stage and I gazed out at the rows of expectant, anxious men’s faces, I found myself pondering how many hundreds of thousands, perhaps millions of men, and where relevant their partners and families, have been traumatised by this treatment. Yes, it is keeping us alive and holding cancer at bay for a time, but at what price? And how is it that after 70 or 80 years of this being the routine, frontline treatment for the most common cancer in men (now the most common cancer in Australia), we still don’t do any psychological monitoring of patients and their families for emotional distress? How is it that patients still aren’t alerted to the key roles exercise, diet, stress reduction and psycho-social support can play in improving quality of life and mitigating the side effects of treatment?
How has the medical system remained blind to the suffering of men while fixated only on survival times with too little regard for quality of life? The answer is, it’s complicated. People like Prof Chambers have been battling away at the coal face trying to facilitate change in a large, unwieldly and fractured health care system for years. Health budgets, oncologist over work and a certain cultural group think that’s dismissive of supportive or complementary therapies have all stymied progress in this area. But there does appear to be a new mood for change.
So, what needs to happen? How do we harness this mood and this moment to create meaningful change? One is to distribute Prof Chambers excellent book Facing The Tiger to urologists and oncologists so that every man who receives a cancer diagnosis also receives a copy (and hopefully those urologists and oncologists might even give it a glance themselves).
Another would be to make sure more men are aware of the PCFA’s excellent Telehealth prostate cancer nurses and counsellors, who are only a phone call away, to answer questions and provide support. Patients and physicians alike need to be better educated about the key roles exercise, nutrition and stress reduction through a mindfulness practice like meditation can play in improving quality of life and offsetting the side effects of hormone therapy.
As someone with a chronic illness, it was four years after my diagnosis of metastatic prostate cancer that I discovered I qualified for something called a Care Plan. This means, under Medicare, I’m entitled to five subsidised referrals a year to allied health professionals for supportive therapies. The patient can choose from a wide range of therapists – exercise physiologist, dietician, psychologist, chiropractor. When I mentioned this at our talk, it was clear many, if not most men were unaware of this feature of the Australian health care system. It would seem a fairly simple fix for a diagnosis of advanced prostate cancer to trigger a care plan, so men could be referred to their choice of supportive therapies.
Even if you didn’t qualify for a care plan, a referral to an exercise physiologist, dietician, psychologist and men’s sexual health therapist should be built into standard care, to give men and their loved ones the best chance of navigating the rocky road ahead.
The dozens of emails and other messages I am receiving daily illustrates how great the need is. We know the devastating impacts of hormone therapy; we know the many ways to help mitigate these side effects. We have an amazing health care system that just requires greater coordination when it comes to cancer care. We need oncologists and urologists and hospitals to get onboard and we need patients to demand better supportive care. Some places are already doing this well – Peter McCallum and the Olivia Newton-John Wellness Centre in Melbourne, Chris O’Brien Lifehouse in Sydney, even a community-funded initiative like the Cairns Organisation United for Cancer Health (COUCH). So, it clearly can be done. But your postcode should not dictate the standard of care you receive.
Tim has now launched his latest book, Patting the Shark. This candid story documents his journey learning to live well with prostate cancer.
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.