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To work or Not to work

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

It’s fair to say receiving a prostate cancer diagnosis, particularly the advanced incurable variety, throws your world into a spin.

How to approach your working life when this devastating news hits is one of the multitudinous challenges that abruptly beset a man at the most vulnerable and disorienting of times.

For older men already retired, this might not be an issue, but for the growing subset of younger men, often still with dependent families, mid-career, this is a fraught business. I’m not here to tell you precisely how to manage this challenge as, seven years on, I’m still working it out myself. Rather I’d like to share a little of my own experiences and what I’ve garnered from other blokes wrestling with the same dilemma.

On the one hand, you’ve got cancer. It’s time to throw off the bow lines, hoist the sales, carpe diem and to trade in your FOMO (fear of missing out) for a hefty dose of YOLO (you only live once)!

On the other hand, there’s the cascading tide of medical bills and the devastating impacts of treatment and the need to not be entirely defined by your disease or lose your sense of identity. What to do? I’ve met men who ditched work entirely and took early retirement upon their diagnosis, only to return to work a few years later because they saw no real impediment to them continuing in their careers. For others, the idea of work can seem entirely daunting while managing treatments and side effects. I’ve also met men who felt they had no choice but to end their marriages so they could receive the full Disability Support Pension, and their wives could still work, rather than plunge their families into poverty – a torturous decision to have to make.

As a freelance writer I’ve been battle hardened over many years against the stresses of financial and employment insecurity. It also probably made it easier for me than most to customise my work life around my new circumstances. But I think some universal principles still apply.

A cancer diagnosis almost inevitably causes us to reassess our life priorities, to separate the essential and supportive from the optional and debilitating. I promptly ditched three volunteer committees I’d been roped into. And I jettisoned all but one of my regular writing gigs, one that would maintain a bare survival income while I came to grips with my diagnosis. Fortunately for me, with two kids still at home, my wife stepped up and took on more of the provider duties. But it also felt good to have some kind of work focus during treatment, to not be entirely consumed by the world of oncology and blood tests and chemo infusions and scans.

I lasted 18 months, editing a quarterly lifestyle magazine, before the pressure of deadlines and a rising PSA proved too much and I chucked that in too. Luckily, I had a couple of unexpected sources of support. I’d lost three mates (two heart attacks and a motorbike accident) in the couple of years before my diagnosis so had finally gotten around to taking out life insurance. And despite some initial scepticism, I’d allowed the salesperson to talk me into paying a few extra bucks a month for what she called “trauma insurance”, doubtful that I’d ever need it. I’m glad I did.  The $50K lump sum allowed me to take around six months off work duties entirely, focussing almost full-time on my health – exercise, eating well, a meditation practice, being present for my kids, and surfing as much as possible.

I also discovered I was eligible for a small Total and Permanent Disability pay-out as part of my paltry Superannuation account. This was a modest but welcome annual instalment (despite its alarming name) for five years which I treated as a bit of a health fund, affording me Pilates classes, gym membership, organic fruit and vege, and essential self-care items like a new surfboard.

Since then, my working life has ebbed and flowed according to energy levels, economic necessity, PSA results and random opportunities. At one point, the impacts of hormone therapy left me with crippling depression, and I could barely work at all and found myself joining the queue at the local Centrelink offices to sign up for a Disability Support Pension. After a protracted process of form filling and providing documentation, and about a 12 month wait, I was approved for the DSP.

It proved a bit of a poisoned chalice. The day I received my Pensioner concession card in the mail, in my mid 50s, felt deeply confronting. While I’m grateful for our welfare system it can also feel quite punitive and dispiriting, treating our most vulnerable and disadvantaged with suspicion rather than compassion.   

I received conflicting information on how to report what little income I did earn three times and lived in fear of incurring a dreaded Robodebt. And I was sitting in a radiology waiting room, for a scan to see if my bone metastases had spread when I received a notification from Centrelink that my DSP had been abruptly cut and my concession card cancelled for failing to get a particular form in on time. Eventually I figured it was less damaging to my physical and mental health to try to continue working rather than being at the mercy of Centrelink’s capricious dictates.

A 2013 study, “The only way I know how to live is to work”: A qualitative study of work following treatment for prostate cancer, interviewed 50 prostate cancer survivors who were in paid employment prior to their diagnosis, and 41 subjects completed a 12-month follow-up interview.

“The focus of this study was to explore the meaning of work among prostate cancer survivors and to describe the linkages between masculinity and work following prostate cancer treatment,” the study states. “A degree of embarrassment and concern about residual side effects and whether these would present a challenge within the workplace was apparent among our sample and was compounded by a reluctance to disclose these. The descriptions provided by the men in this study reveal that the experience of prostate cancer can lead to challenges for both social and work-related roles. In addition, some survivors of prostate cancer may require specific interventions aimed at helping them to manage disclosure of their illness, particularly within a work environment.”

Issues of incontinence, fatigue, self-esteem or being judged as somehow less capable complicated many men’s approaches to returning to work. I’m fortunate enough to work from home and take on as much or as little as I feel able during various stages of my cancer journey. For now, I feel like I’ve found a reasonable balance, striving to perfect the three-hour workday, discovering the potency of writing in short sharp bursts, allowing plenty of time for surfing, parenting, various forms of self-care. My guiding principle has been that I don’t want cancer to stop me from doing things or taking on challenges, while balancing the need for down-time. But these are highly personal choices that will inevitably fluctuate over time.

My best advice would be to have those difficult, candid conversations with employers, partners, colleagues who you might feel able to confide in. And to focus on what you are capable of rather than what you aren’t.

I’m reminded of interviewing the pilot of QF32, Captain Richard de Crespigny, who narrowly diverted a major aviation disaster in 2010, and lived to write a best-selling book about the ordeal. An explosion shattered engine 2 of the Airbus 380 he was piloting with 469 people onboard shortly after take-off from Singapore’s Changi Airport bound for Sydney. As alerts and alarms starting flashing all over his control panels at a pace he could never keep up with, he made a bold decision to abandon monitoring what wasn’t working on his stricken plane and instead focus on what was still working – the remaining engines, wing flaps, landing gear. In this way, he was able to avoid overwhelm and safely land the plane without casualties.

Similarly, as men with prostate cancer, perhaps we can focus on what’s still working and assess what work commitments we’re comfortable taking on based on our abilities rather than any perceived deficiencies. And the crystalising effects of a cancer diagnosis might well reveal new passions, interests and abilities that lead to unexpected career paths. Prior to my diagnosis, I did not have writing a blog for the PCFA, or a cancer memoir for a major publisher, or doing a creative writing PhD on my bingo card. But here we are.

REFERENCES

Grunfeld, E. A., Drudge-Coates, L., Rixon, L., Eaton, E., & Cooper, A. F. (2013). “The only way I know how to live is to work”: A qualitative study of work following treatment for prostate cancer. Health Psychology, 32(1), 75–82. https://doi.org/10.1037/a0030387


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About the Author

Tim Baker is an award-winning author, journalist and storyteller specializing 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.

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