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.
Monday 29 February 2016
It's the final week of my twenties! I'm feeling VERY grateful to have made it to 30 (as long as I don't fall in front of a bus or something in the next few days!) Something I never thought I would do after my last two diagnosis'. I think as far as persistent synovial sarcomas go I'm actually really lucky. I was diagnosed over 5 years ago, i've had active (aggressive) cancer for 1 year and 8 months... which is good going! The six months thing was batted about a bit when I found out I wasn't getting surgery so anything more than that is a blessing. Well all of life is a blessing yadda yadda... Anyway, aye... I'm quite lucky!
Its a weird month. I'm quite sure my tumour is growing, I let my oncologist know and he scheduled me in for a Scan when I got back from holiday. So i had that Scan today and get the results next week (on my birthday). He felt it, and wasn't sure, but he must spend a lot of time looking at peoples lumps so I doubt he'd remember mine particularly well, it's not a particularly special or memorable lump! Anyway, time will tell. And we'll see what this little cluster of 4mm mystery blobs are up to. I've been getting quite bad heartburn and had a bit of trouble swallowing, i'm wondering if it's something to do with those wee blobs! Could also be acid reflux due to taking 9 pills for breakfast every morning and not drinking enough water :o/ No point in stressing about it... but I will anyway. Cause that's how I roll.
We got away on our holiday which was wonderful. Spent most of the time in Switzerland (which wasn't even a planned stop when we left but it was just too beautiful and then we didn't leave until we HAD to). We spent three days tobogganing around the swiss alps. These runs were amazing, some as long as 15km down mountains, maintained purely for sledging! Here's wee Robin on the slopes (thats the eiger in the background.. which we sledged down the next day)
So I've decided to do something for Sarcoma UK again this year, I want to do it ASAP as i don't know if i'll be starting chemo again soon or not. I was brainstorming with my chum and she's very into climbing and such like and we agreed on doing the three peaks. The highest mountains in Scotland, England and Wales. (the three peaks challenge is all three in 24 hours but i most certainly will not be doing THAT!) So this weekend it was beautifully sunny, my husband and I went out to try and climb the nearest munro, Ben Lomond. It was... disappointing and a reality check. I used to climb hill like that with no effort. I struggled a lot more than I thought I would an hard to turn back 20 minutes from the summit because we were losing light :( Bummer! I've been on treatment a year and a half now, my energy levels are LOW. I'll keep at it though. And I WILL do the three peaks.
x
Its a weird month. I'm quite sure my tumour is growing, I let my oncologist know and he scheduled me in for a Scan when I got back from holiday. So i had that Scan today and get the results next week (on my birthday). He felt it, and wasn't sure, but he must spend a lot of time looking at peoples lumps so I doubt he'd remember mine particularly well, it's not a particularly special or memorable lump! Anyway, time will tell. And we'll see what this little cluster of 4mm mystery blobs are up to. I've been getting quite bad heartburn and had a bit of trouble swallowing, i'm wondering if it's something to do with those wee blobs! Could also be acid reflux due to taking 9 pills for breakfast every morning and not drinking enough water :o/ No point in stressing about it... but I will anyway. Cause that's how I roll.
We got away on our holiday which was wonderful. Spent most of the time in Switzerland (which wasn't even a planned stop when we left but it was just too beautiful and then we didn't leave until we HAD to). We spent three days tobogganing around the swiss alps. These runs were amazing, some as long as 15km down mountains, maintained purely for sledging! Here's wee Robin on the slopes (thats the eiger in the background.. which we sledged down the next day)
So I've decided to do something for Sarcoma UK again this year, I want to do it ASAP as i don't know if i'll be starting chemo again soon or not. I was brainstorming with my chum and she's very into climbing and such like and we agreed on doing the three peaks. The highest mountains in Scotland, England and Wales. (the three peaks challenge is all three in 24 hours but i most certainly will not be doing THAT!) So this weekend it was beautifully sunny, my husband and I went out to try and climb the nearest munro, Ben Lomond. It was... disappointing and a reality check. I used to climb hill like that with no effort. I struggled a lot more than I thought I would an hard to turn back 20 minutes from the summit because we were losing light :( Bummer! I've been on treatment a year and a half now, my energy levels are LOW. I'll keep at it though. And I WILL do the three peaks.
x
Saturday 6 February 2016
Now
One of my good friends is having a baby!! Davy was saying to them about how much time has passed since we told them we were having a baby and how it's gone so fast!
It got me thinking about how things changed when we had Robin/I got sick. In the short years we had together before then, everything was about NOW, with occasional sweet dreams of the future. Once you get a terminal diagnosis the best thing you can do is be in the NOW (unless that now royally sucks, i've been there, but most of the time my now is extremely pleasant)... but what actually happened to me, was, life stopped being about now and started being about the future. Not dreaming about the future like we used to. But trying to plan for the future, which was short and bleak. It became about making sure everything was in place for what our now CERTAIN future held. A future we were not moulding together anymore... but trying to mould ourselves to deal with. It started being about the scan in two months time, then three months time, then six... because it was after these scans we'd have the freedom to make our own little plans for a short while. Almost wishing away the little time I'd been given to find out how I was doing. Instead of being in the NOW.. which for me has mostly been great. My health has rarely been dismal, my family and work are wonderful. Most of my nows are perfect. And the main cause of my (many, many, all too common) dark times is due to my concern of the future.
At the moment, there is no future, there is only now.
So here I am.
Smiling.
Until the next time I forget this and worry about the future.. which will probably be soon.. infact.. now that i mention it..... :op
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