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  • Writer's pictureMaddie Cowey

My 7th Sarcoma Awareness Month!

Hello!


This blog is slightly late coming out, but I'd rather post it now than delete it. After all, I should be allowed to raise sarcoma awareness every month of the year, not just July!


As the title of this blog suggests, another year means another Sarcoma Awareness Month. Yes, July is a month dedicated to raising Sarcoma Awareness, and for the community, a time to raise vital funds for charities like Sarcoma UK who support sarcoma patients and their loved ones. Sarcoma is an uncommon cancer - in the UK, 15 people are diagnosed with sarcoma every day. Most people have never heard of sarcoma, and of those that have heard of it - most do not know what it is! It's so rare that in 2016 when I was diagnosed and first found out about it, Sarcoma Awareness Month did not exist. We only had one week!


My first Sarcoma Awareness Week in July 2016 became a turning point for me. That month, 5 months post-diagnosis, I had just received the news that the unusual spot in my lung was not growing, so likely wasn't cancerous (that news did not age well when in the following November that spot had grown, more spots appeared and it was confirmed that I had metastatic/Stage 4 cancer). Anyway, I had spent the months after my diagnosis flitting between a state of denial and 'life-is-over' kind of despair. The good news that July spurred me on a bit and as I learned more about sarcoma my despair turned into anger. I learned that the majority of people are diagnosed too late, when the disease has already spread, with tumours the size of a tin of baked beans! That sarcomas are misdiagnosed over and over again - like mine was. Sarcoma is one of the top 3 cancers in children, yet receives very little research funding. My sub-type of sarcoma has no approved treatments in the UK! How mad is that? I spent that week in July 2016 sharing Sarcoma UK's posts on social media, and I recall being very frustrated with the very little interest my friends/followers took in the posts. Less than 20 likes/views. I really wanted to get the word out - I even tried to get my University GP to display posters. I didn't know what else I could do to grab peoples' attention.


Apart from one thing... Up until this point, I had not 'publicly' shared my diagnosis. I was terrified to do so. Scared I'd get lots of sympathetic comments and messages. Old acquaintances reaching out and offering their condolences. In hindsight, I think part of me was still in denial, and was hoping I could move on from it without any lasting impact. That was a very naive thought. And something about me is that I have a drive to help others and do things for the *greater good* (cringe). I knew that if I wrote a personal post about my diagnosis and shared photos of my scars (the sight of which had sparked emotions from friends and family - so I knew would be impactful), people would listen, and I would get the message that 'sarcoma is cancer' to way more people.


So, I asked my talented sister to take some photos of me with my scarred shoulder out, and I got to it. On the very last day of Sarcoma Awareness Week on 10th July, I posted to Facebook, sharing my 'story' and my scars. You can read the post in the photo below - I was just 18. It makes me cringe a little bit to read, but I'm also very proud of myself. It was a significant moment for me, I'd broken the seal of making my cancer public knowledge, and I'd broken the seal of my sarcoma-awareness and fundraising journey.

There is good reason why so many people who go through traumatic experiences end up fundraising and campaigning. It is cathartic. It gives you power in an experience that is out of your control. My motivation for sharing my story and eventually starting this blog wasn't (or so I thought) for 'me'. It was for the 'greater good', to help others. I felt that personal stories and people 'like me' were far and few between. All I wanted was to read a personal story of a young person going through cancer like me, I wanted to read anecdotes, stories about how people coped with surgeries, treatments, scanxiety, feeling different to your peers, feeling scared. And back then I felt these stories were going untold, and I wanted to be that voice for anyone else going through a diagnosis, so they wouldn't have to feel as lonely as I did. I'd say now that there are soooo many stories out there about cancer, from podcasts, blogs, tiktok accounts and instagrammers, but the value of my blog has been that I can reach people going through sarcoma from all over the world. While I know this blog (and sharing my experience on social media) has helped other people going through cancer, and has helped my friends/family stay connected with me (and my brain), it has also served as a healthy coping mechanism for me and has helped me in more ways than I thought it could.


Suddenly, I have made it to my 7th Sarcoma Awareness Month. Sarcoma already has way more attention than it did when I was diagnosed. Treatment options are coming along with speed, though more is definitely needed. An immunotherapy drug has been approved for ASPS (my type of sarcoma) in America! This is incredible - but so much more still needs to be done. Still too many sarcoma patients are told there is no treatment, no cure, we're reliant on trials and hope, 'positive thinking' and leaning on others in the community for support. Hopefully I will get to see many many more Sarcoma Awareness Months and get to see much more progress along the way.


If you'd like to support the cause, you can donate to Sarcoma UK, run a fundraiser event or take part in a challenge, or even leave a gift for the charity in your Will (I have recently sorted this out and must say the process was made so simple and not scary at all!): https://sarcoma.org.uk/get-involved/make-a-donation/legacy/


Sarcoma UK's funds go towards raising awareness about sarcoma among the public and health professionals, sarcoma research, influencing policy, and supporting anyone facing a sarcoma diagnosis through their information and support line.


Over the years, I've done various things to help raise awareness/money for Sarcoma UK: bake sales, picnics, BBQs, challenges like fun runs, random ass challenges like dancing to 20 different songs for donations, as well as things like social media posts, blogs, podcasts, radio, and magazine articles/interviews.



This year, I got involved with Sarcoma UK's campaign 'Does SIze Matter?', and told my story. You can watch the film on YouTube, or read it on their website: https://sarcoma.org.uk/size/meet-maddie/ , their Celeb Ambassador, Jake Quickenden, even mentioned me and my story on Lorraine! My story was also recently published in Pick Me Up magazine. AND I recorded an episode on the 'Afterthoughts' podcast for their Teenage Years series, supported by the Teenage Cancer Trust. Finally, to raise some money, I hosted a 'Cuppa and Cake' event in my garden with my family and friends, it was a really lovely day and we raised nearly £1,500 in total! It can get quite tiring constantly being on the fundraising/campaigning brigade, but it is incredibly rewarding and great to feel in control of something. So, while I've not been blogging for a while - hopefully you can appreciate that I have certainly not stopped!


I hope to be back with another blog sooner rather than later so watch this space.


Thanks for reading and don't forget to subscribe to get notified whenever I post an update. Until next time !


M x


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1件のコメント


Mandy Bell
Mandy Bell
2023年9月15日

More insightful writing here, Maddie and so interesting to look back and read what you'd written all those years ago when everything was so raw. You've come a long way, but your incredible spirit was visible even then. So good to read about the advancements being made all the time and the approved treatment in America, it's all picking up up pace, the medical science. I reckon the future holds some amazing developments. Absolutely wonderful picnic day with beautiful people, a really great vibe! Looking forward to the next blog X

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