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Weekly Blog: Talking to kids about cancer

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

When I was diagnosed with metastatic prostate cancer seven years ago, one of the most difficult, immediate concerns was how to talk to our kids about it.

Amid all the swirling emotions and information overload, it was almost impossible to formulate a coherent plan about how to broach these delicate conversations. The official advice to practice open and honest communication with kids about your diagnosis felt like a direct conflict with our every parental instinct to protect our offspring from suffering. But it also makes complete sense that kids will fill any information vacuum with their worst fears, which may, in fact, be worse than the reality. So, obviously, clear, age-appropriate communication is key. That doesn’t make it any easier though.

All this is front of mind as I’ve just read Chloe Hooper’ beguiling memoir, Bedtime Story, about her partner Don Watson’s experience with cancer and how to talk to their two young sons about it. As a writer, she went looking for stories, children’s books that might broach these difficult topics in a safe and soothing way, a torch light to guide their family through the darkness.

When Chloe couldn’t find any such book, she decided to write one, directed to her oldest child (to be read at some unspecified later date) but poignantly relevant to anyone and any family facing a grim prognosis for one they love. I could relate to so many parts of her book and that agonising dilemma of not wanting to burst the happy, innocent bubble of childhood with the grim world of oncology, blood tests, scans, the uncertainty and anxiety their parents must endure but which we try to shield our children from.

The catch is, that uncertainty and anxiety exist in the household whether or not you give them a name. Children will pick up on it, internalise it, perhaps unconsciously suspect they are at fault and have somehow created it through some trifling misdeed. Much better to name it, drag it out into the open so that all can survey it together, ask questions, maintain an ongoing conversation around topics most of us rarely confront – mortality, what happens when we or someone we love dies, how to make sense of the ailing life force in someone who would normally care for the child. The ultimate teachable moment.

There’s nothing easy or comfortable about any of this, and I’ve realised over time, and through reading Chloe’s book, that we got much of this stuff wrong in the grip of our own distress. But the dilemma of breaking the initial news was solved for us. When I first received my diagnosis from a urologist, accompanied by my wife, my father-in-law very kindly offered to take the kids (then aged 9 and 13) for the afternoon while we processed the news we’d been given.

When they were dropped home later that afternoon, my nine-year-old son marched straight up to me seated on the couch, looked me straight in the eye and asked, “Do you have cancer, dad?”

I assumed he’d overheard some adult conversation in the course of the afternoon, and there was nowhere to hide.

“Yeah mate, yeah, I do,” I stammered in reply.

But I was gripped by a naïve optimism that somehow, I was going to defy my grim prognosis and didn’t want our kids growing up with the shadow of this existential threat looming over them. But again, that shadow had been cast over our family by my diagnosis whether we chose to speak of it out loud or not. I’d been told I could expect five years of reasonable health, by which time the kids would be 14 and 18 and it could be a different, more candid conversation then if need be. I wanted to try and gradually step the kids up to a fuller understanding of my diagnosis and prognosis as they got older, but I’m not at all sure this was the right approach. I’ve always defaulted to a more positive assessment of my health in all communications with family, even my parents and brothers, but this allowed the people around me to have an incomplete understanding of what I was going through.

One pact I’d made with myself was, I’d always encourage the kids to ask any questions they had and I would always answer them honestly. I would never lie to them. But they seemed happy to take me at face value. They’d seen me go through chemo, lose my hair, become tired and lethargic with an alarming grey pallor, and then return to apparent good health and that seemed enough for them.

A couple of years after my diagnosis, during one of our periodic family chats about my condition, when there was any significant news to report, our son seemed restless and distracted. “I know this is uncomfortable to talk about,” I said gently.

Our older daughter chimed in: “I just think he’s genuinely not worried,” she said.

“I knew you were going to be okay because I googled it,” our young son announced.

I felt a stabbing ache in my heart. The idea of a young boy googling prostate cancer to see if his dad was going to be okay was heart breaking. In that moment, I couldn’t summon the courage to say, “Oh mate, what you read was probably about localised prostate cancer, which is entirely treatable, not the advanced kind I have,” which I now regret.

Now 16 and 19, the kids have a much clearer understanding of my diagnosis and prognosis and my health remains good, so sometimes I console myself that no great harm was done by our reluctance to be more candid. But my daughter said something recently that really hit me between the eyes. “There seemed to be a disconnect between what we were being told and the energy in the house,” she said. Which was my great fear.

If I had my time over, I’d have been braver, more candid. Kids don’t need unfailingly happy stories, Chloe Hooper counsels in her beautiful book. They’re not afraid of darkness, but rather, dishonesty. And truth can light way.

Tim has now launched his latest book, Patting the Shark. This candid story documents his journey learning to live well with prostate cancer. 


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 (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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