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.
Wednesday 14 September 2011
The story so far.. August 2011
Started radiotherapy, almost finished my six week course - sick and reeeeeeaaally tired! Hardest bit so far. (Getting 45gy to a field that covers half my chest from my clavicle to the top of my stomach. Then a boost of 9gy to both positive margin areas. I read a paper about radiotherpy to treat positive margins with sarcoma and it seems quite effective. Although significantly better if the dose is above 65gy but i think 45gy is the maximum you can get at your spine.)
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Thursday 1 September 2011
The story so far.. July 2011
The recovery was really fast at first. Every day I was going a little further and slowly coming off my pain killers. Three weeks after my operation I played the last ever Kings of Macumba gig on the main stage at the Wickerman festival. I didn't think i'd make it, I'm so glad I did! We couldn't hang about at the festival for long though because I couldn't walk far and was still in quite a bit of pain.
I'm the odd one out cause I got there too late to put my top on and crept up behind the band just in time to start playing..
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The story so far.. June 2011
Followed by a couple of weeks at home feeling fine and being a proper mum :)
My friends from Lewis came to stay the night before I had to go into hospital for my operation which was great for taking my mind off it. The night I was in the hospital Mr Kirk came in and explained how he might just "open and close" and not be able to do anything. Or hr might be able to debulk it, but hopefully he'll be able to remove in completely, in which case he'll have to take my whole lung. I'm not sure why, but i'd convinced myself he was going to take it out and all we had to worry about was whether or not the margins were clear. So when he left I was upset and worried again.
The next morning everything happened really quickly and I woke up feeling like i'd been hit by a car. I asked if it was gone and the nurse said yes. I was really out of it and I vaguely remember hearing Davys voice. I told him I loved him, he said something about Robin and I smiled, then I threw up a few times and went back to sleep. Mr Kirk came in at some point and said he took all the visible tumour, my whole lung, my pleura and some of my diaphragm but that I got to keep all my ribs! He said he couldn't get the desired margin in two areas but the radiotherapy should take care of that - Once again, the best case scenario!
:)
The story so far.. May 2011
So I got my hickman line out and another one in. It was an epic TWO HOURS of shoving fat dilators down my vein with no success. Eventually they got it in the left side, but when I went to get my second last chemo it never worked, so I had to get it through my hand and get the f00ker out anyway. THEN when I went to get it out, it worked!! So I'm getting my final chemo through it now. WOOOOOP!! After a really nice two weeks at home just being a mum and forgetting about chemo.
However I got some AMAZING news... my fatty boom batty of a tumour, much to my surprise, has lost enough weight to become operable!!!!!!!! We are now in what was described as 'the best case scenario' when I was diagnosed. There's a chance I could be cancer free by the end of this year. I really felt like all hope was lost (except for the chance of the oil working) because of how big it was. There was no chance of chemo and radiotherapy getting rid of it completely. I'm delighted I don't need to come to terms with that realisation because I was really finding it difficult.
Instead of cancer being the end of my life it might be the beginning of a more self aware journey through life. Best of all, i'll be around for Robins birthday!!
HAPPY DAZE!!!
I met with Mr Kirk (the best cardiothoracic surgeon on the planet!!.. i hope) And he said that if I was as old as my old maw he would have said no to the operation. However, since i'm only 25 and nothing else can be done he's going to give it his best shot. He said he'll probably have to take at least four of my ribs and some of my lung, perhaps even the whole thing.. eeek! He said he'll do it on the 29th of June as I told him I was going to Islay with my friends and he said he thinks that a really important part of the recovery process.
Aaaaanyway! I have just had my final dose of doxirubicin (the cardiotoxic one) and i'm currently having my final dose of ifosfamide (the one thats made from mustard gas and can make you infertile) WOOHOO!!
I'll get home on friday and my friend natasha has organised a charity doo for me on the saturday. So if I don't feel too bad I can party with all my friends at that. What wonderful friends I have :) I really can't believe how lucky I am to have met the friends I have now and to have such an amazing husband. All of them make me want to be a better person when I see all their individual qualities shine through. And Davy, well he's just the best person I've ever met, I can't believe he chose ME as his wife. Despite the whole cancer thing.. I feel so lucky!! LOVE, LOVE, LOVE!!
So, I'll have six weeks of freedom between my last chemo and my operation. Three weeks recovering from chemo then 10 days in Islay!! Cannot wait! Then i'll squeeze in what normal family time I can before the op. I reckon I wont be able to lift Robin for a while after it so I might not get to feed, bath and put him to bed for a while :( That sucks, but if it means I get more time with him in the long run then hey ho - lets go!
CONEHEAD!!
Instead of cancer being the end of my life it might be the beginning of a more self aware journey through life. Best of all, i'll be around for Robins birthday!!
HAPPY DAZE!!!
I met with Mr Kirk (the best cardiothoracic surgeon on the planet!!.. i hope) And he said that if I was as old as my old maw he would have said no to the operation. However, since i'm only 25 and nothing else can be done he's going to give it his best shot. He said he'll probably have to take at least four of my ribs and some of my lung, perhaps even the whole thing.. eeek! He said he'll do it on the 29th of June as I told him I was going to Islay with my friends and he said he thinks that a really important part of the recovery process.
Aaaaanyway! I have just had my final dose of doxirubicin (the cardiotoxic one) and i'm currently having my final dose of ifosfamide (the one thats made from mustard gas and can make you infertile) WOOHOO!!
I'll get home on friday and my friend natasha has organised a charity doo for me on the saturday. So if I don't feel too bad I can party with all my friends at that. What wonderful friends I have :) I really can't believe how lucky I am to have met the friends I have now and to have such an amazing husband. All of them make me want to be a better person when I see all their individual qualities shine through. And Davy, well he's just the best person I've ever met, I can't believe he chose ME as his wife. Despite the whole cancer thing.. I feel so lucky!! LOVE, LOVE, LOVE!!
So, I'll have six weeks of freedom between my last chemo and my operation. Three weeks recovering from chemo then 10 days in Islay!! Cannot wait! Then i'll squeeze in what normal family time I can before the op. I reckon I wont be able to lift Robin for a while after it so I might not get to feed, bath and put him to bed for a while :( That sucks, but if it means I get more time with him in the long run then hey ho - lets go!
CONEHEAD!!
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