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Weekly blog: Not all super heroes wear capes

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

In the unlikely event that this has escaped your notice, oncologists are extremely busy people. You probably know the drill. You sit in the waiting room thumbing through trashy magazines or watching the inanity of daytime TV as the revolving door of cancer patients trudge in and out of the oncologist’s office, until your name is called. You might get a perfunctory five or ten minutes, in which your latest test results are appraised, and you are given instructions to continue on existing treatments or are recommended some new treatment option, and are sent on your way.

This is not a criticism of oncologists, who shoulder insane workloads and have to keep up to date with advances in treatment for a whole range of cancers. But often, we might be left with unanswered questions, and feel the pressure of time not to hold up our oncologist and their busy waiting room full of patients. It can all feel like a bit of a production line. If only there was somewhere we could turn with these unanswered questions or just find a bit of a sounding board without feeling like the stopwatch is ticking. Happily, there is!

I recently availed myself of the PCFA telehealth prostate cancer nurse service and I’m here to tell you, it’s wonderful. There was very little waiting on hold, the woman I spoke to was friendly, knowledgeable and empathetic and gave off no sense of hurry and had plenty of time to answer all my questions.

I’d recently been experiencing some joint pain in my right leg and wasn’t sure if this was a side effect of the bone-strengthening agent, bisphosphonate, or there was something more sinister afoot (excuse the pun). This is the same leg I had a bone metastasis in at diagnosis, which cleared up after combined chemotherapy and hormone therapy (and a lot of meditation, carrot juice, high-intensity interval training, medicinal cannabis and green tea, though I’m assured by my oncologist that had nothing to do with it). I’m hyper-sensitive to sensation in this leg for obvious reasons, but a bone scan confirmed the leg was still clear of cancer. While this was welcome news, it didn’t help explain the strange, intermittent pain I experienced, particularly after walking any significant distance.

My oncologist and I agreed I’d take a break from bisphosphonate to see if that helped and to get a bone density test in the meantime, but that did nothing to alleviate the pain I was experiencing in the here and now. Of most concern for me, was that the pain interfered with my exercise and meditation practice, two of the key elements of my cancer self-care.

My prostate cancer nurse was patient and thorough, asking questions about my clinical picture, making helpful suggestions and where I might seek further information. Some men found pressure stockings, like the kind you can wear when flying, helped with joint pain, she suggested. She also recommended joining up to the PCFA on-line community forum and posting my issue for other men to respond to, and see if they’d found ways to relieve these side effects.  

I dutifully followed both pieces of advice and was more than happy with the results. The pressure stocking immediately helped ease the joint pain. And while the forum thread delivered no silver bullets to solve the issue, it did satisfy that age-old human instinct of call and response – to put out a call out into the world and hear someone call back to you. It’s been at the heart of the human condition since time immemorial and there’s something deeply satisfying about posting a message on the forum and getting the little notification that someone has replied, that you’ve been heard, even if all you get is empathy and a sense that you’re not alone in your struggles.

I’m not suggesting we all get our medical advice from internet forums. That’s what our oncologists are for. But when it comes to quality-of-life issues, strategies to mitigate the side effects of treatment, or simple empathy from someone who understands your circumstances, who better to turn to than other men facing the same challenges?

I’ll be using both services regularly from now on, and it’s comforting to know there’s somewhere to turn when friends and family or medical specialists can’t really assist with many of the challenges we face. The Telehealth service has been running since March 2021 and provides a vital lifeline for the 24,000 Australian men diagnosed with prostate cancer each year. Men and their families can speak with a specialist nurse by calling 1800 22 00 99, Monday to Friday. Australians can also request a call back by registering at:  pcfa.org.au/telenursing-request-form

And you can join the PCFA on-line community here: https://onlinecommunity.pcfa.org.au

This August, Tim will launch his latest book, Patting the Shark. This candid story documents his journey learning to live well with prostate cancer. To launch Patting the Shark, Tim will join Professor Suzanne Chambers at Brisbane Library on August 21, 2022 from 11am to 12pm to talk about his journey. To attend, click here.


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.

House Rules

To help keep this community a welcoming, supportive and caring place we have put together a small list of dos and don'ts for you to think about when posting on our forum, research blog or video gallery. For further information please see our  terms and conditions.

Adhere to PCFA’s five core values of Integrity, Optimism, Compassion, Respect and Commitment.

Our online forum is for you to share experiences with others and does not contain specific medical, counselling or legal advice.  If you require professional advice specific to your individual circumstances we encourage you to see a medical professional, legal professional or counsellor.

No commercial or promotional activity. While members may share information about resources they have found helpful, the PCFA Online Community forum should not be used for the promotion of goods and services. This includes commercial entities passing themselves off as individuals and people who frequently post links to external health professionals or other services.

Be kind to each other - many people using the community are going through a difficult time. A few kind words can go a long way. Please welcome new posters – it can be very nerve-wracking to post on the forum for the first time.

If you or someone you know is suffering from mental health issues, such as depression or anxiety, we encourage you to seek assistance and contact Beyond Blue Tel:1300 224 636 or Lifeline Tel:13 11 14

Speak your mind freely, but please be sensitive to the feelings and experiences of others - you might not always agree, but you can agree to disagree in a peaceful manner.

Don't use offensive language -if a user is found to be using offensive language during their conversations the moderators reserve the right to edit the thread, without warning.

Don't use all capital letters in your posts - it's considered ‘shouting' online and it makes posts difficult to read.

Give each other the benefit of the doubt - please remember that it is all too easy for the tone and meaning of posts to be misinterpreted. Think carefully before replying to a discussion. it It is important to remember that things written rather than said can feel much stronger, so please bear this in mind when reading other people's messages.

Please respect the moderators - their job is to keep the forum safe and constructive so that everybody gets to have his or her fair say.

Stay on topic - try to focus on the original topic. In particular, don't change subject in the middle of an existing thread - just start a new thread.

Read what's already on the forum before posting - you may be repeating what others have already said or asked.

We want PCFA's Online Community to be a secure and helpful environment for all of the community. So please remember that by using PCFA's Online Community you are agreeing to follow our terms and conditions.