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 14 April 2016
Time is a funny old thing.
So i'm STILL here! Over two weeks since my doctor suggested I brought my son up to say my goodbyes and more family huddled round to do the same. I'm still just.... here. Which I am obviously very very pleased about! I almost feel bad about putting people in to a panic and then here we are now! Like I have to explain "sorry for the alarm, I'm not sure why but i'm still here and doing good!" However, with all the passing time I find the quiet acceptance of dying soon that I had when I arrived at hospice after having danced a little with death, waining. Little questions of "what if i'd agreed to that treatment on that day when I got my last results, would that have stopped things coming this far so quickly?" "Why can't I just start treatment now and try to stop things growing or shrink them a little again for a while?" I was so close to starting treatment again, had I realised a few days could have made such a difference of course I'd have acted differently and accepted it right away... I could never have known though, no one could. I'm pretty sure my oncologist was just as surprised to see me in the state I was in so suddenly as I was.
But aye, I''ve been letting these little things creep to the front of my mind despite knowing there's no point! Its just how it is now, and how it was always going to be. I just need to remember the bigger picture, why i'm lucky and what to be thankful for and that acceptance is key.
In the grand scheme of things at the moment, it's still going very well. I'm living in my little room, making things, spending time with Robin, putting things in order. I'm so grateful I can do all this. It is wearing a little thin and getting a little frustrating being in bed so much. I'm amazed at how quickly muscle deteriorates. My arms seem ok cause of the mammoth crochet sessions but my legs and back are all but giving in. After only two weeks? I've began moving from the bed to a chair, very exciting, saw the room from a whole new perspective, haha :) It actually DID make my day to move a little and be beside the window. The next time it's sunny we're going to see about getting me in a chair and getting me outside! The doctor came to see me yesterday and she was pleased with how my lung sounded. Obviously its hard just with listening and no imaging but it does sound clearer and the lung is taking air in low down where the fluid was. I suppose one of the worst case scenarios was the fluid building back up rapidly, that's definitely not happening :) So hopefully it can continue like this and who knows how much time I could have. I've said this before but health is not the absence of disease but the presence of vitality and overwhelming wellbeing! Not that I feel full of vitality by any means, I do feel strong in a way though, not physically, but mentally I feel vitality. I definitely do have an overwhelming sense of wellbeing though thanks to everyone in here and around me. The staff, my family, my friends. I feel well, comfortable, healthy to a degree and very happy!
I do wonder exactly what it is that stopping me being able to breathe and move around. Im guessing it must be the pressure on my heart from the tumour which is obviously still growing, and it was going fast before. Its different in hospice where your care is based mostly on how you are feeling and how you are coping. Where as before it was based on what images were telling us were happening despite feeling fine my images were bad. Now I have no images to explain why I can't move around anymore. It's flipped. But they are taking good care of me and I feel very comfortable. '
Robin has been a little sweetheart. He's been here most nights holding my hand and watching films, jumping in or cuddles in the morning! Tonight when I was reading to him I asked Davy to take over as I was only getting about three words out between breaths and Robin said "No mummy, i like you reading it, it's ok if you can't breathe, I don't mind waiting to see whats happening!" Which I thought was really very sweet and so I continued on! He does miss home though and I feel bad about that. I'm not sure what would be the best balance for him, staying with the family in the hospice or a mixture of going home for sleepovers with grandparents and staying here with us.
Yeah it's been a funny . When time is so precious you just want to seize the day! Thinking of ways to seize the day from a chair by a window in a pair of pyjamas is quite a challenge:) So far, making things is the only plan I can some up with. Until Robin arrives back and then no plan is needed!
I spent time today thinking of lots of things I'll never seen again, it quickly turned in to time thinking of things i've seen and experienced. It was a nice way to spend some time. I've been so many places and experienced so much its unbelievable. Spending time outdoors, travelling and time spent with the people I love are definitely the best things in life. I'm so glad I was surrounded by family and friends I loved, opportunities to experience nature in some pretty special ways and being able to travel to toally different cultures and experience them first hand. WOW. Its just been such an amazing life. I wish I'd taken more photographs!
Oh, and all the sunflowers have popped already :) Its MID APRIL! Need to get the veg in.
But aye, I''ve been letting these little things creep to the front of my mind despite knowing there's no point! Its just how it is now, and how it was always going to be. I just need to remember the bigger picture, why i'm lucky and what to be thankful for and that acceptance is key.
In the grand scheme of things at the moment, it's still going very well. I'm living in my little room, making things, spending time with Robin, putting things in order. I'm so grateful I can do all this. It is wearing a little thin and getting a little frustrating being in bed so much. I'm amazed at how quickly muscle deteriorates. My arms seem ok cause of the mammoth crochet sessions but my legs and back are all but giving in. After only two weeks? I've began moving from the bed to a chair, very exciting, saw the room from a whole new perspective, haha :) It actually DID make my day to move a little and be beside the window. The next time it's sunny we're going to see about getting me in a chair and getting me outside! The doctor came to see me yesterday and she was pleased with how my lung sounded. Obviously its hard just with listening and no imaging but it does sound clearer and the lung is taking air in low down where the fluid was. I suppose one of the worst case scenarios was the fluid building back up rapidly, that's definitely not happening :) So hopefully it can continue like this and who knows how much time I could have. I've said this before but health is not the absence of disease but the presence of vitality and overwhelming wellbeing! Not that I feel full of vitality by any means, I do feel strong in a way though, not physically, but mentally I feel vitality. I definitely do have an overwhelming sense of wellbeing though thanks to everyone in here and around me. The staff, my family, my friends. I feel well, comfortable, healthy to a degree and very happy!
I do wonder exactly what it is that stopping me being able to breathe and move around. Im guessing it must be the pressure on my heart from the tumour which is obviously still growing, and it was going fast before. Its different in hospice where your care is based mostly on how you are feeling and how you are coping. Where as before it was based on what images were telling us were happening despite feeling fine my images were bad. Now I have no images to explain why I can't move around anymore. It's flipped. But they are taking good care of me and I feel very comfortable. '
Robin has been a little sweetheart. He's been here most nights holding my hand and watching films, jumping in or cuddles in the morning! Tonight when I was reading to him I asked Davy to take over as I was only getting about three words out between breaths and Robin said "No mummy, i like you reading it, it's ok if you can't breathe, I don't mind waiting to see whats happening!" Which I thought was really very sweet and so I continued on! He does miss home though and I feel bad about that. I'm not sure what would be the best balance for him, staying with the family in the hospice or a mixture of going home for sleepovers with grandparents and staying here with us.
Yeah it's been a funny . When time is so precious you just want to seize the day! Thinking of ways to seize the day from a chair by a window in a pair of pyjamas is quite a challenge:) So far, making things is the only plan I can some up with. Until Robin arrives back and then no plan is needed!
I spent time today thinking of lots of things I'll never seen again, it quickly turned in to time thinking of things i've seen and experienced. It was a nice way to spend some time. I've been so many places and experienced so much its unbelievable. Spending time outdoors, travelling and time spent with the people I love are definitely the best things in life. I'm so glad I was surrounded by family and friends I loved, opportunities to experience nature in some pretty special ways and being able to travel to toally different cultures and experience them first hand. WOW. Its just been such an amazing life. I wish I'd taken more photographs!
Oh, and all the sunflowers have popped already :) Its MID APRIL! Need to get the veg in.
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ReplyDeleteI love you. I've been thinking of all the places you've been and the adventures you've had too :-)
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