Being able to look back on his journey with cancer and view the experience positively may come down to the ‘luck’ Peter often referred to during his treatment for melanoma. But much of it came down to having access to the right people and the support he needed at every stage. And as Peter observed himself, it’s easier to feel positive when you have a positive experience.
Peter shares his story in his own words...
When we’re unwell, we all want the best clinical outcome we can get, but you can't separate that outcome from the experience you have. And what I mean by that is a good experience contributes enormously to a good outcome.
I think a lot of health practitioners tend to just focus on what's the matter with you, and not on all those other things that really matter to you. I was lucky. I felt I was in really good hands.
I had enormous trust in my health service, Peter Mac, and in my oncologist and surgeon - they worked as a team. They communicated a lot with each other and moved as one if you like.
More than once, I’ve heard people say how unlucky they’ve been because of this or that. And if they’re talking about their disease or an illness, then, yeah, they’re right, it probably is bad luck. But if they’re talking about their healthcare, it should never be a matter of luck. The best care should be available for all of us, whether we live in Melbourne or we live in remote Australia or regional Australia.
Cancer Council Victoria’s cancer nurses are here to support people all over Victoria on 13 11 20, so no one has to face cancer alone.
My partner, Bernie said that he’s seen me stay very positive throughout. He recognised that I have had access to such good treatment, and that the clinical staff have been wonderful – skilled and kind! And, of course, that interest and kindness was also extended to him as you would expect.
As a health academic, Bernie also knew we were fortunate that my diagnoses happened when it did and not 10 years earlier when my treatment wasn’t available.
Bernie’s support and encouragement helped me approach my journey with a positive mindset.
What to do when you have choice
Immunotherapy is the big thing at the moment, but it was new - or relatively new - at the time of my diagnosis. The hardest thing for me by far was making the decision about my treatment and whether to go with the immunotherapy and which form of it.
You've got to remember, even in the last six, seven, ten years, melanoma has come a long way. It's come from being almost certainly a death sentence for many to where there's a lot that can be done.
Bernie was my sounding board, but he believed that the final decision about treatment options was mine alone. We talked a lot about this decision, and I couldn’t have made it without his support.
I knew Bernie was worried, but he always put on a brave and supportive face. This whole experience taught me how stoic he can be. He’s also very practical. I needed to rely on him and leant on his shoulders a lot.
Through all this I've also learned the value of being able to talk to someone independent online or at the end of the phone to ask a question – where I could access accurate information when I was trying to make that decision about what to do.
I contacted the Cancer Council of course. I looked at their publications. I also came across organisations that had peer support and patient advocacy groups. Melanoma Patients Australia provided some great support. They helped me feel that I was not on my melanoma journey alone.
It still amazes me to this day what a rare thing it is that people diagnosing and treating melanoma forget to mention and refer patients to all those other really important, valuable supports out there in the community. I think that's a great shame, because there are so many supports out there to help with decision making and to support our wellbeing and broader health.
Treating the whole person
I think one of the big changes in healthcare I’ve seen is that we are starting to look at the whole person and not just seeing them as someone with a disease. Their fears and hopes, their sense of wellbeing, and their mental health are not only relevant but important and need to be addressed.
When we begin to see a disease or an illness in terms of a person and what that means to a person - it broadens the focus. For example, everybody with melanoma is different. What’s important and right for me, might not be right for my friend.
In the past, I’ve seen a lot of specialists who were very skilled and very certain – like they had seen it all a thousand times before. They were very good at what they do. You would start to speak, and they’d interrupt. You’d start to speak again, and they knew.
Whereas this time, I think the people we had contact with had the smarts – they not only knew about the disease, but they were curious about us and our story and what was important to us. As I said earlier, what mattered to us was just as important as what was the matter with me!
For example, in response to my aches and pains while on treatment, my oncologist suggested I might like to participate in a ‘physical activity and cancer’ trial. I liked the idea and it has actually had long-lasting benefits for my physical health and activity. It got me involved with a group and an exercise physiologist. We’d go to the gym and there was something social and physical about it that I found very motivating.
After doing the program, Bernie and I also got involved in a local community-based gym. Now we both go off together to do master classes there three, four, five times a week.
Again, it was by referral from an oncologist who had the smarts about him and who was not just worried about a physical disease and his specialty. He saw the other sorts of things that mattered to me, not just what was the matter with me.
Peer support, resources and services are so important and so powerful. They are an opportunity to share and learn stories, to have a sounding board. You don't feel quite as alone.
I've actually made a lot of friends out of not being well, good friends.
It also puts my journey into context. Through those peers, there's a downside too – that some of the people I've made really good friends with have since died.
It reminds you that people die of the disease. Bernie would say, ‘live and live each day, do the best you can, make the best decision you can.’
Hopefully my cancer never comes back, but if it does, I’ve got the reassurance that I’ve done everything I possibly could, so it has made me far more accepting of everything.
You can't beat yourself up over things that you can't control. I have a lot to live for!
Recently, an unusual blood test indicated an issue with Peter’s kidney. Referred for an ultrasound, a small cancerous tumour was detected in Peter’s bladder. Surgery and a single dose of chemo was all it required as the tumour was found early. Peter will continue to have regular scopes to monitor reoccurrence.
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