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.
Thursday 8 March 2012
Spring is springing!
I've had anorher x ray, in which everything looks 'normal'. Although they agreed it would be hard to see a recurrence where my lung used to be as that whole area just appears white on an xray. It's the other lung i'm more worried about anyway, and they'd definitely be able to see something in there. I'd like to get a copy of my xrays but not sure how they'd go about it, perhaps just take a screen shot? So it's good news for another two months.. although about a week after my xray I started feeling a bit wheezy but I doubt anything untoward coupld have popped up that quickly.
Lots of people seem to get quite excited when I get the 'OK' for my results, I tend to just feel releived but not excited. I know i'm not out the woods yet and wont be for some time. I feel pleased that things are ok, but it doesn't take the worry away, although i guess it eases off for a wee while. I think maybe I just dont feel as happy as I expect myself to because i'm back at the cancer hospital, and even though its to get good results it just brings it all home again and I think about it more.
I'm not even sure how many years I'll need to be cancer free before they begin to think it's not coming back and I dont really like to think about how long it's been already, cause I know it hasn't been long at all. Although since I had positive margins, I dont think i'm even though of as being cancer free just now. I generally feel quite good about it all, I think i'm doing all the right things to stay healthy. Although when we talk about something in the future the first thing that always comes into my head is 'Will I be here for that?' Like when all my friends and I bought tickets for a concert last year - the concert is next month now so i'm pretty sure I WILL be there :) We just recently booked up to go to Canada in four months, so fingers crossed. I DO have cancellation insurance though. Still have two scans to get before then. Mostly I worry about being here for milestones in Robins life, like talking and such like. He's walking now, and he certainly umderstands lots, he's amazing!
(P.S I got an excellent price for my travel insurancewith.com. £230 for the whole family and i could fill everything in online, the only website I've found so far that even had synovial sarcoma in the drop down menu. Before I found this I was almost put off going to canada by the crazy prices I was being quoted.)
Aaaaaanyway, considering 15 months ago I was told I might have less than six months to live things are going pretty good! I feel healthy, my baby is now a toddler and Davy is back at work full time. BRAW!
I've started yoga which is really helping with the muscle damage from my operation, and also with relaxation. Hillwalking is HARD, not nearly as enjoyable as it was before. Even at the top I dont feel relieved and happy to take in the view, I worry about walking down! Which used to be easy. I think it's not just because of the difficulty breathing, but i'm also just not as fit, and I get tired more easily, so hopefully that will all continue to improve.... Or I might just sack hillwalking, let it be a thing of the past and spend sunny days just chilling out beside a river or loch. That would be a shame though, i'm hoping that after a lot of practice hillwalking will be as enjoyable as it was before. We climbed Ben A'an the other day, which is a really small hill, but very steep... I really didn't enjoy it but i'm sure it was for the best. Before my op I would have been up and down in two hours without much effort, i think it took me three and a half hours this time and I hit the wall about three times! Ooft!
Lots of people seem to get quite excited when I get the 'OK' for my results, I tend to just feel releived but not excited. I know i'm not out the woods yet and wont be for some time. I feel pleased that things are ok, but it doesn't take the worry away, although i guess it eases off for a wee while. I think maybe I just dont feel as happy as I expect myself to because i'm back at the cancer hospital, and even though its to get good results it just brings it all home again and I think about it more.
I'm not even sure how many years I'll need to be cancer free before they begin to think it's not coming back and I dont really like to think about how long it's been already, cause I know it hasn't been long at all. Although since I had positive margins, I dont think i'm even though of as being cancer free just now. I generally feel quite good about it all, I think i'm doing all the right things to stay healthy. Although when we talk about something in the future the first thing that always comes into my head is 'Will I be here for that?' Like when all my friends and I bought tickets for a concert last year - the concert is next month now so i'm pretty sure I WILL be there :) We just recently booked up to go to Canada in four months, so fingers crossed. I DO have cancellation insurance though. Still have two scans to get before then. Mostly I worry about being here for milestones in Robins life, like talking and such like. He's walking now, and he certainly umderstands lots, he's amazing!
(P.S I got an excellent price for my travel insurancewith.com. £230 for the whole family and i could fill everything in online, the only website I've found so far that even had synovial sarcoma in the drop down menu. Before I found this I was almost put off going to canada by the crazy prices I was being quoted.)
Aaaaaanyway, considering 15 months ago I was told I might have less than six months to live things are going pretty good! I feel healthy, my baby is now a toddler and Davy is back at work full time. BRAW!
I've started yoga which is really helping with the muscle damage from my operation, and also with relaxation. Hillwalking is HARD, not nearly as enjoyable as it was before. Even at the top I dont feel relieved and happy to take in the view, I worry about walking down! Which used to be easy. I think it's not just because of the difficulty breathing, but i'm also just not as fit, and I get tired more easily, so hopefully that will all continue to improve.... Or I might just sack hillwalking, let it be a thing of the past and spend sunny days just chilling out beside a river or loch. That would be a shame though, i'm hoping that after a lot of practice hillwalking will be as enjoyable as it was before. We climbed Ben A'an the other day, which is a really small hill, but very steep... I really didn't enjoy it but i'm sure it was for the best. Before my op I would have been up and down in two hours without much effort, i think it took me three and a half hours this time and I hit the wall about three times! Ooft!
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