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.. January 2011
We decide that we should get married before I get sick from the chemo and while I still have my hair. So we talk to some friends at a buddhist retreat centre up north and they tell us we can us their place on the 29th. So we have three weeks to get everything sorted. This is great as it keeps us occupied and keeps me excited.
I have my first chemo cycle and it doesn't seem too bad. I'm really wheezing on the first day though, so they take an x ray and it turns out the tumour is pushing on my windpipe. SHIT! They give me steroids and the wheezing calms down. I feel a bit sick after this cycle but it passes and my bloods are fine. My wedding will be about 3 weeks after my chemo so i'm hoping I'll still have my hair, most people in the hospital reckon I will. I have reeeeaally long hair, i'm not really a girly girl and I dont wear make up or anything but i've always loved my hair!
We plan and execute the most perfect wedding in three weeks. We take our immediate family and closest friends to stay up north for a night. We have a humanist ceremony in the "tufty" (a small wooden building with one side all glass which looks out over inverness from a good viewpoint on the hill). Afterwards we have a wonderful meal and then return to the tufty for some music and shenanigans. We then all go back to the hotel and drink into the wee hours. It feels so great to really let my hair down with my friends for the first time since I got pregnant. I feel great! Talking about letting my hair down though.. it started coming out in clumps the night before the wedding, so I have to cancel my appointment with the hairdresser but my sister manages to hide the matted bit at the back and it doesn't look too bad. As soon as the ceremony is over I stick my hat on so I don't have to keep pulling clumps out. The next morning I have a few bald patches round the front. If we'd got married a day later..
We get home the day after the wedding and Davy has to shave my head. I'd imagined doing this with some friends and trying out some funny hair styles in the process. It was just the two of us though and my hair was so matted it was really hard to shave it.. so there was no funny hairstyles or light heartedness just the two of us and a lot of tears. I was so scared to go and look when he was finished. I really didn't think something as trivial as my hair would affect me this much, I still don't know why it did. Maybe it just brought it all home, that this was really happening because until then I didn't feel or look like I was unwell. Davy took my hand and led me to the mirror, I could only look for a second before I buried my head in his shoulder and said "It doesn't look like me." I quickly got over it though and got a few nice hats.. it was winter time anyway!
The next day it was time to go back in for cycle no.2!
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