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Weekly Blog: What is time toxicity?

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

Greetings from Bali, where your correspondent finds himself enjoying a break from normal transmission, in the splendour of the Ubud Readers and Writers Festival. I’m here to talk about my book Patting The Shark, which you might already be aware documents the perilous path of the prostate cancer patient and my quest for a sensible, middle path through mainstream and evidence-based complementary therapies.

Time slows down in Ubud, particularly when sitting in the inevitable, daily traffic jams, brought on by the flood of western tourists inspired by Eat, Pray, Love mid-life fantasies. The fact that said traffic jams are also amplified by the regular ceremonies, which tend to involve the entire local population streaming towards temples in ornate traditional dress, does rather soften the blow.

All of which may account for my recent contemplations on the subject of Time Toxicity. It’s an interesting concept which, in the context of cancer care, has several meanings. Some doctors speak of the time toxicity caused by patients delaying evidence-based conventional treatments while they search out far-fetched and often expensive alternative, sometimes eastern and often expensive alternative therapies in places like, well, places like Ubud.

This is a very real concern, particularly when it comes to prostate cancer, because delays in treatment might allow the cancer to spread beyond the prostate and radically alter the clinical picture, prognosis and treatment options.

But there is another, less discussed form of time toxicity, and that is the time taken up with medical appointments, waiting rooms, scans, blood tests, treatments, travel between home and your nearest health facility. Or the travel time to access reputable supportive therapies like an exercise physiologist, psychologist or whatever other allied health professionals help guide your treatment journey, especially in remote or regional areas.

When you’ve been diagnosed with advanced, metastatic disease, as I have, and you have been confronted with the very real, palpable reality that your time here is limited, this becomes a critical concern. Do you want to spend your precious minutes, hours, days, sitting interminably in doctors waiting rooms or chemo wards or other elements of the health system and transiting to and from them and your home? Or would you like to be spending more of your allotted time on this mortal coil with loved ones, in nature, splashing in the ocean or indulging your love of classical music?

It has me re-assessing my current treatment regime. I’ve been fortunate enough to – “enjoy” doesn’t quite seem the right word here – shall we say “experience” intermittent hormone therapy, to enjoy regular breaks from its debilitating side effects. Seven-plus years since diagnosis, these holidays from hormone therapy have been my saviour. But I’ve also been gun shy of the three-monthly shot of ADT (androgen deprivation therapy) because when I begin to suffer most acutely, in mood swings and depression, there is no way of getting off the roller coaster until the three months is up. And so, I have opted for the one-month dose, which allows me to pause treatment whenever my PSA drops low enough to satisfy my oncologist. But it also means more regular trips to pathology for blood tests, back to my oncologist for results, and then on the Oncology Day Unit for the dreaded horse needle.

I seem to have settled into a fairly sustainable pattern of two months on and two months off, which satisfies my oncologist’s diligent and risk-averse nature, the fluctuations of my PSA, and my own determined quest for quality of life.

But Ubud has me thinking, might the three-monthly shot present a better risk/reward ratio and and less time toxicity? One trip to the oncologist, pathology, and oncology day unit every three months, rather than one every month? After 7.5 years of generally pleasing results, would this arrangement allow me greater freedom to travel (now we can travel again), surf rather than driving past pumping waves enroute to the hospital, more time with loved ones and for exercise, preparing healthy meals, naps, the indulgence of passions.

Of course, I always consult closely with my oncologist to decide such matters, but this is the question I’ll be returning from Ubud with for him. I recently heard a medical researcher being interviewed on Radio National by health reporter Dr Norma Swan, who explained that when it comes to health care there are two types of people – maximisers and minimisers. Maximisers want every available treatment and pharmaceutical relevant to their condition, to throw everything at their disease in the quest for healing or longevity, whatever the cost in time, money and side effects. Minimisers aspire to as little medicalisation as possible, without taking outlandish risks with their health, to free up their time, reduce side effects and enhance quality of life.

I’ve realised I fall squarely in the minimiser camp. This is not to suggest that either is right or wrong, but it is an interesting concept to consider, alongside time toxicity, to give yourself some agency and sense of empowerment in navigating your cancer treatment options.

Either way, I think most of us would choose time with loved ones, at the beach, lost in music or travel, art or gardening, rather than sitting in waiting rooms. It may be a conversation worth having with your oncologist, even if they initially stare at you blankly or appear agitated that they have a waiting room full of patients while you air such nebulous concepts. But the patient voice matters. Don’t be afraid to use it.


About the Author

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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 (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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