Spending my 4-year Cancerversary in Parliament
Updated: Feb 29, 2020
Today marks exactly 4 years to the day since I was diagnosed with alveolar soft part sarcoma. The day is, of course, bittersweet, but I am not commiserating, rather celebrating living through 4 years with incurable cancer and achieving so much in that time. As much as I wish I was never burdened with the disease, so many positives have come of it and have happened since that I am grateful for, such as graduating from Uni, spending a year in Rome, meeting new friends (cancer friends!) and being a part of a passionate and wonderful community.
So, I want to tell you what I've done today to mark my cancerversary, a bit about my experience so far, and why I am still here chatting about sarcoma and its issues 4 years on!
21st January 2016 - It was a Thursday, I had been called into hospital earlier than expected after the biopsy I'd had a week earlier, and I was hoping for/expecting them to just be dismissing me. I'd been told it was almost definitely something called a 'vascular malformation' and that was exactly what I was expecting to hear that Thursday morning. Instead, I was told it was actually something called a 'sarcoma', but it was okay! They were going to cut it out and I would be fine!
21st January 2020 - Fast forward 4 years, and it was not exactly 'fine', the cancer had actually spread to my lungs, and later to my bone, and is still present in my lungs today. However, it is currently inactive, and aside from the odd scan (including a PET scan next week) my day-to-day life is generally unaffected.
I spent the day today speaking to MPs at a drop-in event in Parliament with Sarcoma UK, about the issues faced by sarcoma patients. It was great to be involved with the charity's policy work, having interned with them last year, and it was even better to talk all things-sarcoma today of all days.
Some of the key issues include late/incorrect diagnosis of sarcomas, patients having access to the best treatment, and a lack of research. With it being such a rare and often unusual type of cancer, it can be difficult to spot, and GPs are so unlikely to see sarcomas in their careers that they frequently misdiagnose them. By the time many are diagnosed, the disease has already spread to distant areas of the body, and is far more difficult to treat. Traditional chemotherapy is ineffective on most sarcomas, and patients end up having to take part in clinical trials, or use treatments that are palliative rather than curative. Only 55% of sarcoma patients survive 5 years, a poor statistic that could be improved with better sarcoma services.
Don't let my personal experience misguide you - having disease stability for 1.5 years on no treatment is not usual for sarcomas! They are actually very often very aggressive, and fast progressing cancers, which is again why more needs to be done.
15 people are diagnosed with sarcoma every day, and it can be a very lonely and isolating diagnosis. Information is sparse, and it is a cancer very few have heard of.
You can find support through the Sarcoma UK website, as well as lots of in-depth information. But if you have any other questions you can get in contact with me, either through this blog or by emailing me or contacting me on my social media pages.
Now, seen as I'm doing dry-January, please have a drink for me today to celebrate me reaching this 4-year landmark!
Thanks for reading, until next time!