I’ve been on a bit of a binge lately. But, fear not, it hasn’t involved booze, recreational stimulants or late nights doing the cockroach in sweaty nightclubs. Rather, my vice has been reading an indecent number of cancer memoirs as part of my creative writing PhD studies. And of the many little gems and truisms I’ve picked up along the way this is one of my favourites:
“Ask what matters to you, not what’s the matter with you.”
I can no longer recall out of the enormous piles of books I’ve consumed which one it came out of (note to self: update PhD bibliography!) but it was one of those statements that hit me right between the eyes when I first read it.
Perhaps most surprisingly, the advice came from an oncologist to his patient, while deciding on a treatment pathway. I say surprising because treatment protocols sometimes seem overly rigid, failing to take into account our unique individuality and life priorities. It’s a good question for all of us to ask ourselves as we navigate our cancer “journeys”. And as unique individuals we’ll all have different answers, and they may well change over time.
To extend life at all costs, even at a significant sacrifice of quality of life? To see our kids or grandkids reach adulthood? To be able to still indulge our great passions in life – be that sport, creative endeavours, a love of fine food and wine, or music or travel? To be here for a good time rather than a long time?
For me, with kids aged nine and 13 when I was diagnosed with metastatic prostate cancer back in 2015, I set myself the goal of 10 years survival time (when I was told six was optimistic), to see my kids reach adulthood and some level of independence. I was prepared to cop the debilitating impacts of hormone therapy and early, concurrent chemotherapy in pursuit of that noble goal.
Eight years on, with the frontline treatment of ADT still effective and that 10-year goal in sight, kids now 17 and 21, there’s a greater emphasis on quality of life. That’s meant intermittent hormone therapy, taking breaks whenever my oncologist deems it safe to do so, and a reluctance for further chemo. And with the sad end of a 20-year marriage, there’s also a practical need to be able to continue to live independently for as long as possible.
Along the way I discovered a few other things that mattered most to me – the euphoric therapy of wave-riding, to be able to continue to ply my trade as a writer, not just to earn a crust, but as a way to process the inevitable travails of a cancer diagnosis and its treatment. The preciousness of my close friendships.
I’ve spoken to other men for whom the priority is to keep up their weightlifting practice, cycling, golfing, a love of literature. I’ve been reminded of all this while helping my 89-year-old father through a recent diagnosis of localized prostate cancer. For dad, with at least a couple of co-morbidities, the emphasis is very much on quality of life over longevity. Like many men of his generation, he’s a hardy, stoic old bugger, still doing the gardening, swimming in the ocean, enjoying the pleasures earned from a lifetime of hard work – good food, wine, keeping socially engaged and abreast of current events.
Whipping his prostate out might promise a curative outcome but at the considerable cost of incontinence, potentially for the remainder of his days. This would be an immediate blow to quality of life, leading to greater social isolation, loss of confidence, not to mention the serious medical risks of surgery and general anaesthesia. Though we’ve both been diagnosed with the same disease, the lifestyle equation could hardly be more different.
And while prostate cancer is not the father/son bonding scenario I might have wished for, it has brought us closer together, facing a shared adversary and being able to offer him the benefit of my own experience. I feel fiercely protective of the old boy as he faces the changes of a medical system that doesn’t always factor in our unique circumstances and priorities. Happily watchful waiting, aka active surveillance, has been prescribed, monitoring PSA for any uptick, with short sharp bursts of ADT as a backup plan should the cancer get a wriggle on.
What matters most to you? It’s a worthwhile question to linger on and your ultimate answers might not be the initial obvious ones. And remain attuned to how they may shift over time. Managing a cancer diagnosis is no picnic, but it can bring our priorities into sharp focus.
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.
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