Weekly blog: Not all super heroes wear capes

12 July 2022

Three cheers for telehealth prostate cancer nurses

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