What older people told us about their experience of cancer
Between June 2015 and February 2016 OPAAL trained ten older people affected by cancer to share their cancer experience with health and care professionals with the aim of raising awareness of the advocacy role and the benefits to older people affected by cancer.
We learned that the trainer role is a special role, we recruited older people affected by cancer with the confidence to tell their story to health and care professionals and with the skills to condense their own story and be able to adapt this to different audiences.
We delivered an intensive one day training programme followed up with support to develop their stories and we worked alongside project partners to identify appropriate audiences for sessions. We found that trainers felt more confident to deliver sessions when they were buddied up together to deliver their stories in pairs, offering each other peer support.
During the lifetime of our Older People’s Cancer Voices programme we’ve built on this and have been having conversations with older people affected by cancer, gathering their stories and amplifying the issues that they tell us are important to them, their words are a powerful insight into the impact of cancer on older people’s lives.
“You know what, the doctors and nurses that cared for me were brilliant, but talking to other patients I was one of the lucky ones, I had a family and a support network around me, an understanding employer, so many people don’t have that and I want to help make doctors aware that they don’t always have the full picture maybe, who is at home with your patient? So if they live alone is anyone going to call this person after treatment, just to see how they’re coping? I can’t imagine going through cancer alone, I find it difficult to think about…”
“Our normal lives stopped at the point he was diagnosed as having cancer, our hopes and dreams had to be put on hold”
“Appointments with doctors become something you look forward to, isn’t that funny? It’s the days where you’re waiting, nothing is happening, you’re on the “watch and wait” that you really hit rock bottom, because there’s no progression, only you trying to live your life, which is quite different to the life we lived before cancer”
“Reading was a dangerous thing for me, I read all of this information about cancer, I couldn’t work in those first few months so I made researching my diagnosis and prognosis my new full time job, it was lonely, I missed the workplace. Perhaps if I’d had someone who’d been through it to talk to I might have taken a different path, I became very depressed and anxious instead. That said, I didn’t reach out for help because I thought I could handle it on my own”
“Living with cancer can be lonely…yes, peer support is essential even when family and friends are at hand, they needed me to be strong when I didn’t always feel like it…there were things I wanted to say, to ask, and I held back.”
“The diagnosis was such a shock to me but then it started to sink in, my husband couldn’t deal with it, he didn’t have the words or know how to react and by the time I was ready to face it, to be there for him, he was really very low”
“I wish advocacy had been available at that time, they could have supported me a lot… I didn’t always feel I was making an informed choice, even just a bit of support during appointments would have helped me take it all in”
“I’m a few years down the road now, what did someone say earlier? A Survivor? I can’t agree with your there, you can move on but you never forget, I always feel I’m looking over my shoulder, will it come back? But now I am better equipped I suppose and sadly as I’m growing older more and more of my friends seem to be affected to, I feel useful I suppose, being able to help them make sense of it all”
“My role as an advocate is very small, I’m not doing very much at all, but it’s a privilege to be accepted into someone’s life, for them to accept you when they’re at their most vulnerable takes a lot of courage, it’s a true partnership”
“I think the message for health professionals has to be “you have nothing to lose from referring to advocacy but your patient has everything to gain””
Finally, you can read our latest collection of stories, featuring peer advocates talking about their experience, Time: Our Gift to YouTrain the trainer key issues handout