“And he said it’s cancerous…and as he kept talking I felt I was drowning, I didn’t hear any of what was said next, hearing cancer stopped me in my tracks. I’d planned to meet my oldest sister for lunch after, not expecting this at all.” (Older People’s Cancer Voices participant.)
Our work is often about unexpected conversations, starting with the cancer diagnosis, which can be an unexpected conversation in itself. For 18 months I’ve been leading on our Department of Health funded Older People’s Cancer Voices project; it’s about amplifying the voices of older people affected by cancer, bringing advocacy to life through the stories of older people who have accessed it, and those volunteers involved in its provision. We’ve tried to give older people access to a wide range of tools to support them to share their experiences.
I’m particularly enthused by the films we are working on with older people, the unexpected conversations we’ve been having really show the strength of the advocacy partnerships we’re supporting.
We work with vulnerable client groups and this has been our first foray into filming one to one with advocates and their advocacy partners. We wanted to be brave about telling these stories and not shy away from difficult topics, working alongside older people to bring these issues to light sensitively. Older people tell us that they need support to face cancer, no two people have the same experience of cancer but many people share common issues and concerns and the peer advocacy partnerships we nurture bring about their own unexpected conversations.
As Jan, a peer advocate volunteer, says: “There are many, many conversations through that treatment that you can’t have with the people that are close to you, you need somebody in your life that you can say all the things to that you can’t say to your loved ones - advocacy gives you that.”
Mike’s Story, recently released on our YouTube channel, illustrates how advocacy can turn things around for older people, putting them back in control. Mike and his advocate Bob talk about their advocacy partnership; watching this for the first time, it was an unexpected conversation I was hearing even though I knew this story well.
It’s a powerful and frank film which gets to the very heart of how a cancer diagnosis can take over and spiralling fears set in. Mike’s film starts up with a candid account of his journey to overcoming alcoholism: “I came down to Bournemouth to get off the booze, getting cancer was not part of my plans, it was not part of my plans at all.”
Mike was in recovery from alcoholism and had just had a diagnosis of diabetes when he was diagnosed with cancer. He describes feeling terrified and disillusioned, sometimes suicidal. Bob was "someone who has had a similar experiences", someone who really knew cancer. Bob helped Mike to feel more confident going for treatment and check-ups, to make decisions and speak to health professionals, something Mike found “terrifying” in the early days of his diagnosis.
Harder to capture on film is the wide range of issues advocates provide support with. In Mike’s case, this has included help organising paperwork, encouraging his progress overcoming alcoholism, reassuring him about side effects of treatment and ensuring health professionals were made aware that he could feel claustrophobic in smaller spaces. At first Bob’s role was to represent Mike’s wishes and needs, and later encouraging him to have the confidence to do these things for himself the next time.
Bob reflects on how the objective of the partnership, to help Mike to stand on his own two feet and express his wishes, has been achieved and he feels he’s learned a lot from conversations with Mike too, and the many other advocacy partners he has supported in his role.
So far, over 1,600 people like Mike, aged 50+ affected by cancer, have accessed the Cancer, Older People and Advocacy service, a partnership programme between the Older People’s Advocacy Alliance and Macmillan Cancer Support, and funded by Macmillan and BIG Lottery.
The service is currently available in ten areas in England and one in Wales, supported by over 200 volunteers like Bob, themselves older people affected by cancer who want to support others going through the same trauma.