A few years ago, at one of the regular lab tours that Mel Cantley’s myeloma research group runs for consumers in Adelaide, a group of patients were asked what they needed. The new drugs were remarkable, they said. The science was moving fast. What they actually wanted was mental health support.
One of the people in that room was a man named Dom, who ended up as a co-author on the grant application that followed. He had a way of describing it that stuck with everyone.
“You have to have this base of resilience to live well with myeloma. You have to keep that cup half full, because otherwise you’ll just fall apart.”
Dom wasn’t in crisis and that’s the point. He could feel the spiral starting well before anything reached the threshold where the system would step in, and he wanted something for that gap. Most of what exists in Australian mental health care sits on the other side of it, waiting for people to be distressed enough to qualify.
This episode is about what happened when we tried to build something for that gap, with A/Prof Hannah Wardill and Natalie Tuckey. It’s a wellbeing skills program we’d mostly run in workplaces, rebuilt with and for people living with multiple myeloma and smouldering myeloma, and now delivered in peer groups by Myeloma Australia’s specialist nurses.
Listen or watch the video below.
There’s a lot in here for anyone who has tried to take a wellbeing program somewhere it hasn’t been before. Early on, when Hannah and Matt were going around pitching this to people in cancer care, they kept hearing the same thing back. “We already do wellbeing”… which was true. It just meant something completely different to what we meant, mostly symptom management and physical activity and diet.
Then there’s the part that will be familiar to anyone who has tried to prove a wellbeing program works. We’re running this as a randomised controlled trial, and Hannah is refreshingly blunt about the cost of that. Every participant walks in wanting something different. A bit more happiness. The confidence to raise something with their haematologist. Better relationships at home. All of them meaningful, and only one of them can be the primary endpoint.
“It’s inherently difficult to match rigorous clinical trial constraints with what is fundamentally central to wellbeing, which is that it’s a highly individualised process.”
The last ten minutes go somewhere else entirely. Natalie has done more than forty interviews for this project and never directly asked anyone about the end of their life, which she thinks says something about her own avoidance. Every single person raised it anyway. Nobody around them wanted to be the one to start that conversation, so most of them were carrying it alone.
What we get into
Why mental health support mostly arrives once someone is already in crisis, and what a program built for the years before that looks like
Why specialist myeloma nurses turned out to be the right people to deliver it, and what facilitating did for the nurses themselves
Why this landed when the same content struggled in workplaces and universities
What a lab scientist finds unnerving about wellbeing research the first time she meets it
The participant who technically dropped out of the pilot and used what she’d learned anyway
Why “fear of recurrence” might be a phrase we use to avoid saying something else
A/Prof Hannah Wardill leads the Supportive Oncology Research Group at the University of Adelaide and SAHMRI, where the focus is improving the lived experience of cancer. Natalie Tuckey is a health and clinical psychologist finishing her PhD on multiple myeloma and smouldering myeloma. You can connect with Nat and Hannah here.
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