How do we carpe diem?

PCFA

By Tim Baker

As some of you may have detected, it’s been a funny old week for your correspondent.

After labouring over a book, Patting The Shark, for the best part of two years, documenting my journey with metastatic prostate cancer, it was finally released. Like most authors, I felt deeply anxious and insecure about whether anyone would remotely care or take an interest. It turns out I needn’t have worried.

I think the timing was right. A few weeks before launch, the news broke that prostate cancer had recently overtaken breast cancer as the most prevalent cancer in the country, a dubious distinction that no one felt like celebrating. But it did prime the media to finally take an interest in the daunting survivorship challenges facing men with prostate cancer, particularly its advanced variety.

I hoped to use the book launch and attendant media interest to draw attention to the debilitating realities of life on hormone therapy and the need for better coordinated, supportive care for men trying to manage the often-devastating side effects of treatment. I also wanted to be very clear, I am not trying to discourage anyone from following conventional cancer treatments, or to ignore the advice of their oncologist. Rather, I wanted to see an integrative, multi-disciplinary approach to prostate cancer care, and cancer care more generally, that treated the whole person and not just the tumour as a part of standard care.

I wanted to highlight the role of exercise, nutrition, stress-reduction through a mindfulness practice like meditation, in improving quality of life for men with prostate cancer. Every man prescribed hormone therapy should be at least offered referrals to an exercise physiologist, nutritionist, psychologist and men’s sexual health therapist to fill in some of the yawning gaps in treatment protocols, particularly for younger men.

But I wasn’t prepared for the Saturday morning trip down to the local newsstand, to find my weathered noggin on the front cover of the national broadsheet’s Weekend Magazine. Discussing loss of sexual dysfunction and libido and the other emasculating side effects of hormone therapy has been deeply uncomfortable but I decided early on if I was going to write this book, it needed to be as raw and candid and unfiltered as possible to try and capture the harsh realities of life with prostate cancer and on hormone therapy.

The response has been completely overwhelming – not just the media interest but the flood of supportive messages from other men and their partners, apparently grateful that someone had dragged these uncomfortable topics out into the light, It feels to me like there is a bit of a moment and a mood for change here and so I am interested in hearing how other men think we might best use it to achieve some meaningful outcomes.

Obviously, I have my own ideas, outlined in the book – more supportive therapies, more research into the roles of exercise, diet, meditation, certain herbs and supplements and off label drugs that offer some hope of better outcomes and to help mitigate the side effects of treatment, for starters. Greater empathy and open-mindedness from oncologists around these challenges. Better monitoring of patients and partners for emotional distress. A sensible discussion of the benefits things like medicinal cannabis and psychedelic-assisted therapy might offer men struggling with prostate cancer and its treatment, and cancer patients more broadly.

Some specialist cancer hospitals are already doing some of this stuff fairly well – The Chris O’Brien Lifehouse in Sydney, the Peter MacCallum Cancer Centre and the Olivia Newton- John (RIP) Cancer Wellness and Research Centre in Melbourne, the COUCH (Cairns Organisation United for Cancer Health) Wellness Centre in Cairns. But standard of care should not depend on your postcode. And it would appear I’m not alone in this conviction.

Following the splash in the Australian (paywalled, sadly), there was this article on The Conversation website about the patient/oncologist relationship and how we might improve it. It’s so far been read by about 140,000 people and was the Conversation’s Most Read article that week: Physician heal thyself? After 4 years of treatment for stage 4 cancer I just wanted some encouraging words from my oncologist

When I saw oncologists tweeting and sharing the article on Twitter and urging their colleagues to read it, it seemed a real opportunity had arrived.

And this wide-ranging conversation with Andy Park on ABC Radio National generated lots of interest that led to other media opportunities: Patting the Shark

There were a bunch of other regional radio interviews and favourable reviews in the national press, which was all very gratifying, to see the topic was gaining some traction. But it was the messages that began flowing in that meant the most to me. The comments on the PCFA Facebook page left me feeling like part of a supportive community together advocating for change: This is Tim Baker

So, how do we harness this momentum? Many pieces of the survivorship puzzle already exist, and it seems to me it is largely a question of piecing them together, to save every man having to go through the laborious process of trying to solve the jigsaw for themselves. Prof Suzanne Chambers’ essential resource, Facing the Tiger, offers the definitive prescription for prostate cancer psycho-social support. The PCFA’s Telehealth nurses and counsellors offer real, human support for any man anywhere in the country who should need it.

As someone with a chronic illness, you may quality for a Care Plan, a range of allied health referrals subsidised under Medicare, to help you assemble your own multidisciplinary team to manage the multi-layered challenges of prostate cancer and hormone therapy. But in my experience, this isn’t well understood or brought to the attention of most men trying to manage their diagnosis and treatment. And the absence of these supportive therapies impact partners and entire families, often as acutely as the man with the diagnosis. We can and must do better.

I’ve tried to keep up with all the messages and comments and respond to as many as possible but please know they’ve all been read and appreciated. I’m conscious too of managing my energy levels and not spreading myself too thin, to not allow the promotion of a book on cancer self-care to sabotage my own self-care. But I’m also keen and motivated to harness this moment. So, what would make your own management of prostate cancer and its treatment easier? How do we not just live longer but live better-quality lives? I’d love to hear your thoughts.

This August, Tim will launch his latest book, Patting the Shark. This candid story documents his journey learning to live well with prostate cancer. To launch Patting the Shark, Tim will join Professor Suzanne Chambers at Brisbane Library on August 21, 2022 from 11am to 12pm to talk about his journey. To attend, click here.


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.

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