Watch the Flame's interview with John Stubbs AM
A Thirroul resident and now Member of the Order of Australia, 74-year-old John Stubbs is on a mission to put patients at the centre of healthcare treatment.
Twenty-four years ago, John was diagnosed with chronic myeloid leukemia. His prognosis was three to five years, and with no siblings, a donor bone marrow transplant seemed unlikely.
John went on a clinical trial, but it didn’t work for him. Then he got lucky: a US woman who had put her name down on the Bone Marrow Registry was a perfect match.
Thanks to her, John had a chance. On the first of March 2001, the bone marrow landed at Sydney Airport at 5am. An ambulance went to the airport, picked it up and transported it to the Royal Prince Alfred Hospital in Sydney, where John and his family were waiting in anticipation.
John remembers his supporters standing around his bed, wearing T-shirts with “Team John” on them, made by his 12-year-old son.
John is a great talker and openly shares his experience as a cancer patient.
“I had some issues with the way I was treated ... I felt that it wasn't my disease, that it was kind of the health systems disease, and I went about trying to make changes that would benefit patients and their families.
“One of the things that was missing for me when I went through my treatment, I wasn't able to talk to somebody who'd been through the treatment.
“And I think sitting down, talking to a cancer patient and telling them, 'Look, there are going to be some tough days, but I got through it and this is what helped me.' I'm not going to say that everything's going to be rosy. It's not. It's a hard slog, but with a good support network… And hospitals and NGOs, national government organisations, are now providing a lot of that network.”
John recalls his time in isolation at the hospital, before and after his transplant.
“I wanted to eat what I wanted to eat, when I wanted to eat it. I didn't want breakfast at seven o'clock. I didn't want lunch at 11.30 and I didn't want dinner at five. But that's the hospital system. So we wanted to bring in a microwave and a refrigerator into my room, because you're in your own room, you're isolated for all of that time. The hospital said no.
"Well, bad move on behalf of the hospital. You don't say no to Julie [John’s partner]. So within two days we had a microwave and a fridge in the room.”
John even installed an exercise bike in his room.
“I used to ride that just to maintain some sense of purpose.
“That's taking control of your environment and your situation. Julie and I now stress when we talk to cancer patients to take that control and clinicians and hospitals will give it to you.”
John had a positive outcome and ever since he has dedicated his time, together with his partner Julie, to help make patients' voices heard.
“I think governments now listen to us. The local area health governments now have consumers appointed to the board. Patients have a lot to give and, and patients come from many different walks of life.”
In January 2023, John was appointed a Member of the Order of Australia in recognition of the array of high-profile positions he has filled since overcoming cancer. He has chaired numerous research and clinical trial groups and is now chair of a panel advising the government on the Medical Research Future Fund. He is also on the board of the NSW Cancer Institute.