This week is Sarcoma Awareness Week, so I thought I’d put together a little post about what I’m dealing with and how sarcoma has become the biggest part of my life in the last year. The point of my blog is not only to help people who are going through similar battles, but also make Sarcoma more known, even if it’s just to one person. In the unlikely event that I am the reason someone has checked that lump and found an early diagnosis of sarcoma, my work here will be done! It’s not just about those people, it’s also about the people who won’t get sarcoma, the readers who one day will cross paths with someone in pain, and will remember my story when suggesting that they visit their GP, just in case. Although I have shared a lot about my own experience with cancer, I have not often mentioned sarcoma itself, so I should probably take the time to do that – since there’s a whole week dedicated to it?!
Worryingly, but also understandably, the first thing people say in response to ‘I have Sarcoma’ is ‘what is that?’ I get this. Before I was diagnosed, my family and I had never even heard the word before and I remember skipping over this one in a list of other potential cancers whilst they were doing further tests to confidently diagnose which one I have. From never hearing the word, to now seeing it every day, I often wonder how this was possible, how did I go 21 years not having a clue about something that is happening every day in our world? Sarcoma UK is the only charity in the UK to focus on all types of sarcoma, and their aim is to have put £3million into research by 2020. This is nothing when it comes to cancer, this is how difficult it is to raise money for something so unfamiliar. Compare this with the amazing £24million Soccer Aid has raised for UNICEF in the last ten years, why? Because there is much more awareness to their cause and people have helped to donate to something that they know is important and changing lives of children who need it most. Sarcoma UK are still trying to find effective treatments for more than fifty different types of sarcoma, but the worrying aspect of that is that most sarcoma patients do not have ten years to wait! The prognosis is shocking, and they aim to improve this only by 10% in the next 2 years.
The reason I am using my voice to spread awareness for Sarcoma, is because had I have seen my doctor even a week later, it would have been a very different story. I am of the highest grading and staging of cancer and the doctors think I have only had it for as long as I had the symptoms, which was about one month, and I acted incredibly fast and was luckily listened to and diagnosed within two weeks, the speed it should take to diagnose cancer. The most important thing I have learnt is to listen to your body, you know when something is not right, it may seem minimal and luckily most of the time it is, but do you really want to avoid ‘bothering your GP’ at the risk of your own life? Be persistent, sarcoma is often misdiagnosed as there are many bone and muscle-related conditions, I know we often trust our doctors more than our gut, but not all doctors have wide knowledge of sarcomas, I was lucky enough that my GP had seen a sarcoma case 15 years ago and recognised the signs.
There are over 100 sub-types of sarcoma, and there is a 4 in a million chance of getting mine; alveolar rhabdomyosarcoma, and just because it’s a childhood cancer does not mean you can’t get it when you are 21, 45 or 68 – nobody ever plans on being one of those 4 people, but unfortunately, somebody has to be. So what about the symptoms? Well in the early stages which are more favourable for survival, there aren’t usually any symptoms. Then as the cancer starts to grow, depending on where it is there may become a lump or pain and soreness if it begins pressing on a muscle or a nerve. Other symptoms could include:
– Uncomfortable swelling
– Limited mobility
– Skin lesions
– Abdominal pain
So nothing too abnormal or concerning, which is what delays diagnosis in Sarcoma patients. Nearly everybody I have met with sarcoma had been dismissed by their doctors at first, as it was ‘just’ aches and pains in their body. One of the most stressful truths about sarcoma, is that whether or not you are able to treat it, it is more than likely to return. This is so likely, that my consultant often says ‘when it comes back..’ rather than ‘if it comes back.’ Therefore, vital research is NEEDED to find new drugs and ways of treating a relapse. I was confident that if I manage to beat it this time round, surely we can do the same again when it comes back, and I’ll be ok? Apparently not, it is highly unlikely my body will respond to the same chemotherapy drugs more than once, so the doctors would have to try something different – this is where the worry begins that there isn’t enough research to grant access to unlimited types of drugs!
Next Sunday, 15th July I am hosting a Big Picnic event in aid of Sarcoma UK. This is something they do every year for Sarcoma Awareness Week and hopefully we can raise even a small amount of money to contribute towards their research. If you’d like to come please ask me about the details ASAP but if not, don’t worry I have set up a Just Giving page where you can donate here – and I promise however tiny your donation, I personally am so incredibly grateful that it may help to save my life or somebody in the same situation.
I made it even easier! If you can’t be bothered to get your card or log in online, you can text ‘SCMA96’ and your amount (e.g ‘SCMA96 £5’) to 70070 and it adds to my fundraising page.
If you want to know more about how cancer happens, this video is really good: https://www.youtube.com/watch?v=BmFEoCFDi-w
X x daisy