Maddie, aged 25, lives in London. She says cancer has changed her life since her diagnosis at 18 years old, but it does not define her life.
I was 18 when I was told I had sarcoma. I had just started at university, I was incredibly naïve, and at the same time was going through my first heartbreak. It felt like my world was falling apart. In many ways it was and it did. My view on life suddenly changed – I was faced by my own mortality and started questioning everything I knew. It was a very lonely place.
Since my diagnosis, I have learned so much about sarcoma, a cancer I’d never even heard of before. It took over 5 months from my first visit to the GP to receive an accurate diagnosis of alveolar soft part sarcoma (ASPS), an ultra rare sarcoma subtype. I had symptoms for about 18 months before that. I have since learned that this kind of late diagnosis is all too common for sarcomas.
The only indicator that something was wrong was a small, slow growing lump on my left shoulder – and that, to me, was not sinister. I am ashamed to say that the only reason I went to my GP was because I thought the lump was ugly and I wanted it removed. Ironically, I now have 2 quite large scars on my left shoulder, and a dent where some bone was removed, and I think it is beautiful.
About 6 months post-diagnosis doctors confirmed that the cancer had spread and was incurable. I have now been living with ‘innumerable nodules’ in both lungs for around 7 years. Chemotherapy is ineffective for my type of sarcoma and the nodules are too many and too dispersed to be surgically removed. I am therefore reliant on clinical trials and compassionate-use drugs. I have only recently been coming to terms with the fact that I will never know adulthood without cancer, but I am fortunate that thanks to being treated by sarcoma specialists my cancer has been reasonably stable. There are no approved treatments for my subtype of sarcoma in the UK and many other sarcoma patients are in similar positions to me, whereby there simply hasn’t been enough research, so prognosis is poor. I am hopeful that my cancer can continue to be kept at bay for many many years to come.
It was a crazy diagnosis to receive at 18, and while I am not a fan of constantly being told to ‘keep strong’ and ‘keep positive’, I can’t deny that cancer does make me all the more grateful for life and all the joy life can bring.
Living with cancer has guided me to be and do what I love today – becoming an ambassador and fundraising for Sarcoma UK, volunteering with the cancer/hair loss charity, Wigs for Heroes, working full-time at a local Disabled Person’s Organisation, and sharing my story on social media and on my blog, Maddie’s Cancer Tales.
I raise awareness about cancer, particularly sarcoma and rare diseases which deserve way more attention, understanding and research, by being open about my story and my experiences. It is an incredibly lonely diagnosis, especially as a young adult, so being able to open up conversation, make connections, and help others going through the same feel less alone, is such a privilege.