A Great Escape - supporting young adults with cancer
Posted on April 2, 2014
Four years ago, I was diagnosed with Stage 4B diffuse large b-cell lymphoma – an aggressive form of blood cancer that had spread from a large tumour in my chest to my liver, bone marrow and one of my kidneys before the doctors could work out what was wrong.
In the nearly six months I spent in the hospital receiving chemotherapy, I was always the youngest patient on the haematology ward. The average age of someone with my type of cancer is 71; at that age, you’ve probably had a family, had a career, and are settled into retirement. As I was in my 30s, my career was relatively newly established, I’d been married for a year, and my daughter was six weeks old. Most of my medical team remarked at what an “unusual case” I was, but they didn’t know anyone else in my situation, and there were no charities that specifically supported someone my age.
Two years after I finished treatment, I met another young woman, Emma Willis, who had started a group in Poole for young adults in their 20s, 30s and 40s. As odd as it sounds, it was an unbelievable relief to find someone with whom I could compare blood counts. Together, we expanded Shine Cancer Support to London and we now have six ‘networks’ of young adults with cancer across the country. We also began to think about how we could provide more in-depth support to adults aged 25 to 49 – people who basically fall into a “support gap” in which they’re too old for specialist teenage treatment, but feel far too young for standard support programmes.
One of Shine’s guiding principles is that young adults who have experienced cancer can provide each other with a unique form of support. We also believe that it’s important to provide young adults with information on topics no one likes to discuss – infertility, depression, and how you can live while facing incurable disease.
In January this year, we translated this philosophy into a three-day “Great Escape” for 24 young adults. Mixing peer support, expert advice, and a fair amount of wine, the weekend was both lots of fun and a testament to the power of a shared experience. Our “Escapees” ranged in age from 24 to 47, but everyone found someone they had something in common with. People left knowing that while they may not be able to control their cancer, they were a little bit less alone in the experience. 96% of the Escapees said that the weekend had helped them move forward in their cancer experience and feel more emotionally supported; all of them said that the event was fantastic overall (and we did give them other options!).
We’re aiming to make the Escape our annual, flagship event. Thirty thousand adults aged 25 to 49 are diagnosed with cancer each year in the UK so the Escape doesn’t even really scratch the surface of the support that’s needed. But it’s a small and important step in our growth as an organisation. Coupled with the expansion of our networks and online presence, we believe that our approach has the ability to make a real and positive impact on the lives of young adults living with cancer.
Take a look at the short film from the Shine Escape below
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