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Tim Baker: Sustainable patient advocacy (and why it doesn't exist)

Community Manager
Community Manager
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It’s been just over a year since my prostate cancer memoir Patting The Shark came out.

In that time, I’ve spoken at writer’s festivals, cancer conferences, libraries, men’s sheds, literally dozens of media engagements, on radio, TV, in print and on-line.

I’m going to be a little immodest here for a moment and note that some people who’ve worked in this space far longer than I, have commented that I’ve changed the conversation around prostate cancer. Despite great personal discomfort I’ve spoken candidly about the eviscerating effects of hormone therapy, it’s impacts on my masculinity, sexuality, relationships, mental health.

I’ve held men in my arms while they cried on my shoulder. I’ve looked into men’s eyes who’ve told me they are incapable of experiencing joy. I’ve run prostate cancer patient forums and writing therapy workshops, tapped out dozens of these blogs on my laptop, usually over a Monday morning coffee while foregoing my morning surf. I’ve been through the breakup of a 20-year marriage, dark moments of utter despair and glittering days of an unexpected euphoria at my unlikely survival.

And, eight years on from my diagnosis with metatstic prostate cancer, right now, I’m just really, really tired.

So, this will be the last of these blogs for the foreseeable future. I’m not ruling out resuming transmission at some undefined point in the future if I think I have something fresh and meaningful to say. But for now it feels like time to rack the cue and retire from this unexpected role as prostate cancer poster boy I seem to have stumbled into.

Undoubtedly, some other brave soul will step up and play their part for a while, just as many have come before me before succumbing to burn out, fatigue or their disease. Sadly, prostate cancer patients appear to be an endlessly renewable resource. Which, apart from a dire medical problem, is also an issue for sustainable patient advocacy.

Lately, as the invitations to cancer conferences and other engagements have increased in frequency, I’ve realised this role has become unsustainable and I risk re-traumatising myself and putting in jeopardy my own health. That I need to walk my own talk and practice good self-care.

But I feel like I can’t drop the mic without also dropping a few truth bombs.

I’ve been buoyed by what appears to be a relatively recent and widespread movement to listen to and value the “patient voice”. This is an entirely positive development. But it does make me question, what were you all listening to previously? The bottom line? Pharmaceutical sales reps? Hospital administrators? I may be naïve, but I would have imagined the patient voice might have been what everyone working in health care was listening to all along.

Also, in a capitalist society, the way we attribute value is largely monetary. Professional people are remunerated for their time, expertise and experience. Recently, when I have politely suggested that it might be appropriate to financially compensate me for my time to attend cancer conference, to give up weekends with family and loved ones, to speak candidly about deeply personal issues in public forums, I’ve been told this simply isn’t possible.

Pharmaceutical companies can’t make direct payments to patients, I’m told, as if this is an irrefutable law of nature, like gravity. All the other speakers are volunteering their time, I’m told. As far as I can tell, all the other speakers are well-paid health care professionals on liveable salaries who regard this as a part of their professional duties, not stage four cancer patients who have had unstable housing for the past 12 months because they can’t afford to pay rent and keep up with the endless tide of cascading medical costs. Couch surfing. House sitting. Road tripping while living out of a van.

So, I’m out. Honestly, it’s been a blast. I’ve been greatly buoyed by all the kind and generous feedback from my prostate cancer brothers and, very often, their gracious and caring partners. Solidarity to you all. Living with prostate cancer is a monumental shit sandwich, no question, but hopefully by sharing our experiences and cultivating empathy we can improve the bread-to-shit ratio.

I’m indebted to PCFA for their whole-hearted support and have nothing but gratitude for the tireless and dedicated work they do – the advocacy, the telehealth nursing and counselling services, which I’ve availed myself of many times. The simple understanding and kindness.

But for now, I’ve got a fractious teenager to shepherd through year 12 exams, an affordable long term rental property to hunt down, a PhD thesis to complete, and a new job teaching journalism at university that, mercifully, has nothing to do with random mutant cells endlessly dividing and the oncology day unit.

And, I’m not going without pleading one more time:

-       Prescribe exercise and nutrition as medicine.

-       Provide allied health support for men on hormone therapy as part of standard care.

-       The diagnosis should trigger a care plan – exercise physiologist, nutritionist and men’s sexual health specialist, at the bare minimum.

-       And please, for the love of all that is precious, find an alternative treatment to the relentless misery of Androgen Deprivation Therapy (ADT), which traumatises not just the men who are prescribed it but, where relevant, their partners and entire families.

Once more with feeling: You cannot starve men of testosterone and just send them back out into the world to fend for themselves. Prescribing ADT without putting these supportive measures in place is like amputating someone’s leg and not offering them crutches, a wheelchair or prosthetics.

Even my old laptop is starting to wig out and refusing to save this. Another sign it’s time to move on.

Peace, out.

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 eight years on, at 58, 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 (AEDT).

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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