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

2 comments:

  1. Dear Michelle,

    I am so sorry to hear the results of your scan, I have no words, I just want you to know that I have read your latest news, and that my wife and I are thinking of you and your family.

    Although we do not know each other, there is a small place in my heart that you occupy.

    Love

    Dougie



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  2. Thank you for the kid words Dougie :) All your comments have made me feel a lot better about posting to what seemed to be an empty web of space for a while! I hope you and your wife are keeping well xx

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