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.
Tuesday 19 April 2016
Day 20 in hospice.
I never thought for a second I would have been here 20 days! And I certainly never thought that 20 days after arriving I would be breathing a little easier and moving around a little more than I was when I arrived. I think myself and everyone else fully expected my health to continue to decline. It did at the beginning and then something changed. I began to stay stable which I think is what I could hope for at best.
Now I'd say things are improving. I don't fully understand why as I obviously have tumours which are progressing and compromising my heart and lung function but for whatever reason I am breathing and moving A LITTLE easier. I still cannot move around easily without needing oxygen to recover. But its a little progress, and when you're taking life a day at a time thats a great thing. I mostly notice it when reading to Robin at night. It just feels like I can get more words in the sentence out. So I am pleased :) I definitely don't need the oxygen as much at all.
Still wrestling with the emotions of "why can't we just give this treatment a try" but I think that's only human. Acceptance is still at the front of my mind.. there's just a little "what if i'm getting better enough to carry on with my treatment plan?" creeping up there sometimes too. So I emailed my oncologist.. She wrote back and say she'd be happy to see me, but if i wanted to continue with my treatment plan I would have to be "getting around under my own steam" for most of the day again, otherwise I would be too unwell for treatment. Which makes sense to me. I don't know if I could get there, but stranger things have happened I suppose.
So today the doctors stopped some of the meds in my pump to give me by tablet if I need, them, we're thinking of getting me off the pump all together and if I need painkillers just to take them in tablet form. After that that it's really just my breathing thats holding me back, which is improving but I'll fully understand if it can't get back to normal. All in all, things are getting better little by little. And even if its just to give me more time at hospice enjoying my family, that's great too! In all honesty though I'D JUST LOVE A RIGHT GOOD DOSE OF RADIOTHERAPY TO THE TUMOUR AT MY HEART PLEASE AND THANKS! To take the pressure off and let me get healthy enough to have trabectedin :)
So I went outside today!! I cannot believe it's been three weeks, I have never been inside for more than a day! It was a beautiful day and just so good to see that I can do it. Now I'm thinking of where we could escape to in the van for a quick visit with the wheelchair :) I just went out to the grounds around here, and planted some of our veg for the garden round at our van. It was amazing to feel the sun on my face again and see Robin running around. I LOVE just watching him do his little thing. Everything about him amazes me. For someone so small he has such a big heart and soul. Tonight I was talking to Davy about some anxieties I have, Robin listened in and he got out of bed and came over and just hugged and kissed me, for a little guy he's so in tune with how others feel and how he can influence that. Best wee dude ever! x
Now I'd say things are improving. I don't fully understand why as I obviously have tumours which are progressing and compromising my heart and lung function but for whatever reason I am breathing and moving A LITTLE easier. I still cannot move around easily without needing oxygen to recover. But its a little progress, and when you're taking life a day at a time thats a great thing. I mostly notice it when reading to Robin at night. It just feels like I can get more words in the sentence out. So I am pleased :) I definitely don't need the oxygen as much at all.
Still wrestling with the emotions of "why can't we just give this treatment a try" but I think that's only human. Acceptance is still at the front of my mind.. there's just a little "what if i'm getting better enough to carry on with my treatment plan?" creeping up there sometimes too. So I emailed my oncologist.. She wrote back and say she'd be happy to see me, but if i wanted to continue with my treatment plan I would have to be "getting around under my own steam" for most of the day again, otherwise I would be too unwell for treatment. Which makes sense to me. I don't know if I could get there, but stranger things have happened I suppose.
So today the doctors stopped some of the meds in my pump to give me by tablet if I need, them, we're thinking of getting me off the pump all together and if I need painkillers just to take them in tablet form. After that that it's really just my breathing thats holding me back, which is improving but I'll fully understand if it can't get back to normal. All in all, things are getting better little by little. And even if its just to give me more time at hospice enjoying my family, that's great too! In all honesty though I'D JUST LOVE A RIGHT GOOD DOSE OF RADIOTHERAPY TO THE TUMOUR AT MY HEART PLEASE AND THANKS! To take the pressure off and let me get healthy enough to have trabectedin :)
So I went outside today!! I cannot believe it's been three weeks, I have never been inside for more than a day! It was a beautiful day and just so good to see that I can do it. Now I'm thinking of where we could escape to in the van for a quick visit with the wheelchair :) I just went out to the grounds around here, and planted some of our veg for the garden round at our van. It was amazing to feel the sun on my face again and see Robin running around. I LOVE just watching him do his little thing. Everything about him amazes me. For someone so small he has such a big heart and soul. Tonight I was talking to Davy about some anxieties I have, Robin listened in and he got out of bed and came over and just hugged and kissed me, for a little guy he's so in tune with how others feel and how he can influence that. Best wee dude ever! x
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I just want you to know I also have SS, primary in my left pleura... You are an inspiration to me, and I've had a weird feeling everytime I come check this page, that you will still be here, and sure enough you are.
ReplyDeleteI am praying for you my friend, and will continue to do so.
Wow, it's not often i hear from people whonalsonhave a primary in the pleura. Are they going to remove it for you? I hope all is going well with your treatment. Thanks for getting in touch :) x
DeleteThanks for the updates and pic. Robin is such a cutie!
ReplyDeleteI love you x
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