How I became a patient advocate
At 67 years old I should be taking up retirement, but suddenly I have a new career – cancer patient advocate. I was not looking for a new job, but it found me. Or rather cancer found me.
In 2015 I was diagnosed with colon cancer. It came out of the blue. I did not know I was at risk. I didn’t think I knew anyone who had had colon cancer. I had surgery and then chemotherapy and now I live with the permanent side-effects.
My brother, Damon, was not so lucky. The GP would not refer him because he was under the screening age. He was finally diagnosed two years later with advanced colon cancer and he died within 6 months.
I soon discovered that cancer of the colon was in fact common in my family, but earlier generations never talked about it. This was probably the point at which I became an advocate.
There was a Macmillan cancer rehabilitation exercise class near me that needed help, so I designed their website. They connected me with the local hospital, and I took up a voluntary role on one of the patient representative panels. Bowel Cancer UK held a patient conference, and I met many advocates who were doing extraordinary things, running support groups, helping research, hospitals, even the government in developing cancer treatment and care. I became a cancer awareness speaker.
In 2019 I was asked to start a new colorectal cancer support group in my area. All was planned for a Spring 2020 launch. Then COVID-19 happened. If this pandemic meant we really were to be isolated for weeks or even months, what would happen to all those who developed cancer symptoms? Cancer was not going to recognise COVID as an opportunity to go on holiday. The need for cancer support would become even more necessary as people were cut-off from their usual family and friend networks.
In March 2020 I launched Bowel Cancer Support Group UK on Facebook. It grew very slowly. Then in September, when they restarted colonoscopy diagnostics, our membership accelerated. Today, three years later, we have over 3 600 members and it is a very active group providing information, peer advice and empathy.
We have a large team of volunteers that moderate the group to make it a safe place for anyone affected by colorectal cancers. However, it still takes a lot of time. On the one-hand I am involved in the day-to-day running of the group, but on the other hand I get an in-depth knowledge of how cancer is diagnosed and treated today, from a patient perspective.
This in turn helps me represent the cancer patient on national and international panels. Through my role on the Patient Advisory Council of Digestive Cancers Europe, I get the chance to influence research and screening policy. With Inspire2Live I am honoured to be part of a much larger conversation about tackling cancer on a world-wide scale.
Patient Advocate Inspire2Live