A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Monday 14 March 2016
The end is nigh.
So.. I turned 30 last week. This in itself is an amazing feat. I had terminal cancer at 24! Smashed it!! Then at 28 it came back, and since then i've been living WITH it... we're not good friends but we've been hashing it out for a long time and I feel lucky to have come this far. I think by aggressive synovial sarcoma standards, having an active tumour for almost two years would definitely be considered lucky. However, the inevitable has finally happened.
On my 30th birthday, I woke up and got dressed and went to hospital to get my scan results. A scan I had brough forward cause i thought I felt my tumour growing. Turns out I was right. I was worried i'd be right and would have to get trabectedin. How naive was i? Whats actually happening is... it IS growing, I DO need trabectedin.... but also, there's a new tumour. Surprisingly its grown to the same size and my other one, in under six weeks (in other words its grown fast as fuck) and unfortunately, its sitting directly behind my heart. Apparently that explains my intense fatigue and crushing feeling in my chest when I bend over. I also have a cluster of something in my bowel that has doubled in size in 6 weeks.
OK, so trabectedin then. When i applied for pazopanib there was no doubt I'd get it... but recently another dude at my hospital was refused his funding for trabectedin. I'm wondering if its because its the end of the financial year? They've overspend and need to cut back? I've no idea. Anyway, they're not too hopeful about me being granted the funding.
SO..... Its all over the place, and I don't think i'll be getting treatment. Its takes three weeks for a decision and then if they say no you can appeal. I said to my onc "three weeks then appeal? My tumour has grown this big in less than six weeks, i probably won't have time to appeal!" and she just smiled and nodded :/
So here I am.
What are you supposed to do when you potentially have weeks to live? I've been making a blanket, photo albums, thank you cards, letters... Also I watched a movie called P.S I love you... I was thinking of copying that but switching it up so it wasn't quite as exciting and just leaving notes saying things like "Did you put the fucking lid back on the jam??" "Why have you not done the dishes?" hehehe.
I DON'T KNOW WHAT I'M SUPPOSED TO DO!! I don't want to do anything. Any advice would be much appreciated.
xx
On my 30th birthday, I woke up and got dressed and went to hospital to get my scan results. A scan I had brough forward cause i thought I felt my tumour growing. Turns out I was right. I was worried i'd be right and would have to get trabectedin. How naive was i? Whats actually happening is... it IS growing, I DO need trabectedin.... but also, there's a new tumour. Surprisingly its grown to the same size and my other one, in under six weeks (in other words its grown fast as fuck) and unfortunately, its sitting directly behind my heart. Apparently that explains my intense fatigue and crushing feeling in my chest when I bend over. I also have a cluster of something in my bowel that has doubled in size in 6 weeks.
OK, so trabectedin then. When i applied for pazopanib there was no doubt I'd get it... but recently another dude at my hospital was refused his funding for trabectedin. I'm wondering if its because its the end of the financial year? They've overspend and need to cut back? I've no idea. Anyway, they're not too hopeful about me being granted the funding.
SO..... Its all over the place, and I don't think i'll be getting treatment. Its takes three weeks for a decision and then if they say no you can appeal. I said to my onc "three weeks then appeal? My tumour has grown this big in less than six weeks, i probably won't have time to appeal!" and she just smiled and nodded :/
So here I am.
What are you supposed to do when you potentially have weeks to live? I've been making a blanket, photo albums, thank you cards, letters... Also I watched a movie called P.S I love you... I was thinking of copying that but switching it up so it wasn't quite as exciting and just leaving notes saying things like "Did you put the fucking lid back on the jam??" "Why have you not done the dishes?" hehehe.
I DON'T KNOW WHAT I'M SUPPOSED TO DO!! I don't want to do anything. Any advice would be much appreciated.
xx
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