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 11 April 2016
Tea, toast and tenna lady!
Tea toast and tenna lady!
Just a few of the fabulous free things you get in here. I am totally sold on the tenna lady, never going back to normal pants again. Why would you? Little follow through? No biggie, just rip em off. Going for a shower and forget to take them off? Just rip em off in there and bin them! Travelling? Just take your TLs with you, more room for smuggling wine on the way home and less washing to do! I love them!
The tea and toast is great too but I'd trade it all in for a day at home in my own clothes, being able to walk around my house. Get Robin ready for bed, read his story and cuddle him in his little bed. It's funny to think of all the simple things I didn't often think about that seem so big now I know we've done them for the last time. Picking him up from nursery, bathing him, waking up alone with him and sitting in our jammies until it's time for nursery.
Anyway, spilled milk and all that, here is where we are and where we are is here. I finished my blanket today which made me more happy than I think anyone will realise. Having something to leave that Robin watched me make for over a year and suddenly turn in to something over a week in here. He loves it too, and I love that it's something that will bring him comfort and warmth like a mother should :)
Two days ago there was definitely a marked decrease in my breathing again. No scares, just a quiet progression. The fluid had risen a little again in my pleura but not by much. Given the fact they though I might get no relief from draining and I've now had almost two weeks of stable good days to spend with my loved ones it's amazing! But yeah, a wee change two days ago that seems to have stayed that way. I guess that might be how it goes, little decreases here and there. There's no telling.
Robin has stayed four nights now and they've been amazing. We usually watch a film, then I breathlessly read three words at a time of his book while he patiently waits and listens to the story then we all hold hands for a while (robins idea) then go to bed! The morning snuggles in his pants with thunderbirds on and the nurses bringing him breakfast in bed are the highlight for me though. Something we never did at home as we have no tv in bed and no one bringing breakfast. Also it's just so good to feel his little skin against me again.
I really can't believe I got this much time from the draining after discussing it being too much of a risk to bring any benefit! I know I just said that but I'm so happy about it I'm saying it again! I really was a goner with that fluid in there, I wouldn't be here today. I've sent out the appropriate thank you's for this precious time.
It's frustrating as well as precious. If I didn't have that blanket I think I'd have divorced my whole family and fell out with everyone at the hospice. Lying in bed is HARD! I need to start a new project I think. Something therapeutic like crocheting but not so big that the race against the clock is making me neurotic about having a darning needle waiting at 7am as soon as I wake up!
I wonder how Davy tirelessly just IS, all the time. He's my oxygen concentrator mover, my body mover, my bed fixer, my get me on to the chair man. And when he's not here I get nervous and ask him to hurry back. He must be demented but he doesn't let it show. He carries on with such grace and fortitude, you couldn't find yourself a better man. Well maybe one that talked a little less about trees, and lights, and some other stuff... Or maybe just less talking in general! I'm kidding... Sort of.
It's sunny again, and I'm alive :) x
Just a few of the fabulous free things you get in here. I am totally sold on the tenna lady, never going back to normal pants again. Why would you? Little follow through? No biggie, just rip em off. Going for a shower and forget to take them off? Just rip em off in there and bin them! Travelling? Just take your TLs with you, more room for smuggling wine on the way home and less washing to do! I love them!
The tea and toast is great too but I'd trade it all in for a day at home in my own clothes, being able to walk around my house. Get Robin ready for bed, read his story and cuddle him in his little bed. It's funny to think of all the simple things I didn't often think about that seem so big now I know we've done them for the last time. Picking him up from nursery, bathing him, waking up alone with him and sitting in our jammies until it's time for nursery.
Anyway, spilled milk and all that, here is where we are and where we are is here. I finished my blanket today which made me more happy than I think anyone will realise. Having something to leave that Robin watched me make for over a year and suddenly turn in to something over a week in here. He loves it too, and I love that it's something that will bring him comfort and warmth like a mother should :)
Two days ago there was definitely a marked decrease in my breathing again. No scares, just a quiet progression. The fluid had risen a little again in my pleura but not by much. Given the fact they though I might get no relief from draining and I've now had almost two weeks of stable good days to spend with my loved ones it's amazing! But yeah, a wee change two days ago that seems to have stayed that way. I guess that might be how it goes, little decreases here and there. There's no telling.
Robin has stayed four nights now and they've been amazing. We usually watch a film, then I breathlessly read three words at a time of his book while he patiently waits and listens to the story then we all hold hands for a while (robins idea) then go to bed! The morning snuggles in his pants with thunderbirds on and the nurses bringing him breakfast in bed are the highlight for me though. Something we never did at home as we have no tv in bed and no one bringing breakfast. Also it's just so good to feel his little skin against me again.
I really can't believe I got this much time from the draining after discussing it being too much of a risk to bring any benefit! I know I just said that but I'm so happy about it I'm saying it again! I really was a goner with that fluid in there, I wouldn't be here today. I've sent out the appropriate thank you's for this precious time.
It's frustrating as well as precious. If I didn't have that blanket I think I'd have divorced my whole family and fell out with everyone at the hospice. Lying in bed is HARD! I need to start a new project I think. Something therapeutic like crocheting but not so big that the race against the clock is making me neurotic about having a darning needle waiting at 7am as soon as I wake up!
Having a snuggle under the finished blanket, which I think we're both pleased with :)
I wonder how Davy tirelessly just IS, all the time. He's my oxygen concentrator mover, my body mover, my bed fixer, my get me on to the chair man. And when he's not here I get nervous and ask him to hurry back. He must be demented but he doesn't let it show. He carries on with such grace and fortitude, you couldn't find yourself a better man. Well maybe one that talked a little less about trees, and lights, and some other stuff... Or maybe just less talking in general! I'm kidding... Sort of.
It's sunny again, and I'm alive :) x
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I love you, and the beautiful finished blanket! And I bet you wish you'd discovered tena lady some time ago, haha ;-) xx
ReplyDeleteHaha, i bet Lisa and Laura wish id discovered them earlier too!!
DeleteWhat a precious little boy you have and what a special gift you are leaving him. My husband has recently been diagnosed with cancer and your courage, calm and perspective is truly inspiring. I hope your family is sheltered from any future storms.
ReplyDeleteLots of love and light from Mumbai, India.
Thank you for the comment. I hope your husband is keeping well and his treatment is as easy and effective as can be! I was originally diagnosed as terminal but ended up in remission so definitely never give up matter the diagnosis!
DeleteI have been to Mumbai, a beautiful part of India!
Love from Scotland x
Good to see a few more memories for your boy, I think your husband is being remarkable.
ReplyDeleteLove to you all
Dougie
You're doing pretty good as well.........
ReplyDeleteWhat a beautiful blanket! Thank you for sharing. :) I've been thinking of you!
ReplyDelete