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.
Sunday 14 August 2011
The story so far.. February 2011
Cycle no.2 again isn't too bad. We have the most wonderful registrar Kate. She always takes a lot of time to answer our questions in great detail.
I have my hickman line inserted for this cycle. This wasn't pleasant at all, they had quite a bit of trouble getting the dilaters down my vein and it took a bit longer than usual. I know it will be worth it though as there will be much less needles involved in my treatment. Once it's in I go for an x ray to check it's position. As I leave the room I catch a glimpse of my x ray on the computer screen. I'm pretty sure it looks like my tumour is smaller as it's not pushing on my windpipe anymore, in fact I think it looks like it's about 15mm or more away from my windpipe. A smile creeps over my face as I tell Davy what I think I saw.
When we arrive back to my room Kate is in there and she has a massive smile on her face. She says "Do you want some good news?" and I know I was right about it getting smaller. We both let out a couple of excited squeals and she shows us the x ray beside the one I had in january. It appears to have reduced a good wee chunk in all directions :) My chemo is working!!! There was a 50/50 chance it would work and it is!! And it looks like it's working really well, after only once cycle. I measure how much it has reduced with my finger and then take five more of them off the tumour and it's gone, if the chemo works that well every time there would be no tumour left at then end! Maybe they were wrong and chemo will cure it....? :oD
I have my hickman line inserted for this cycle. This wasn't pleasant at all, they had quite a bit of trouble getting the dilaters down my vein and it took a bit longer than usual. I know it will be worth it though as there will be much less needles involved in my treatment. Once it's in I go for an x ray to check it's position. As I leave the room I catch a glimpse of my x ray on the computer screen. I'm pretty sure it looks like my tumour is smaller as it's not pushing on my windpipe anymore, in fact I think it looks like it's about 15mm or more away from my windpipe. A smile creeps over my face as I tell Davy what I think I saw.
When we arrive back to my room Kate is in there and she has a massive smile on her face. She says "Do you want some good news?" and I know I was right about it getting smaller. We both let out a couple of excited squeals and she shows us the x ray beside the one I had in january. It appears to have reduced a good wee chunk in all directions :) My chemo is working!!! There was a 50/50 chance it would work and it is!! And it looks like it's working really well, after only once cycle. I measure how much it has reduced with my finger and then take five more of them off the tumour and it's gone, if the chemo works that well every time there would be no tumour left at then end! Maybe they were wrong and chemo will cure it....? :oD
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