In my own order...
Sorry I've been a quiet for a while. Paul nailed it. I've become a bit insular.
I think it's because I've been concentrating on life after chemo which is a real roller coaster.
The Ugly I developed a rash that became really itchy. It started behind my ear and then spread across my face and the top half of my body. It became red and inflamed and only a few days of steroids could bring it under control.
The Bad The tiredness is all consuming and even worse than before I went to India. I could sleep most of the day.
I still have bouts of nausea and this permanent nasty taste in my mouth along with a kind of slimy feeling in it.
I'm definitely weaker than before I went. Things weren't good when I got home I couldn't get up the stairs to bed so slept downstairs on the sofa bed. I struggled to get out to the bathroom and even to use my level access shower by myself.
Paul had to take me in a wheelchair from the house to the car, I just couldn't walk that far, and it's not miles away!
The Good Before I went to India my feet looked a bit like this..
These aren't my feet but almost identical. The swelling would a times extend up to my knees and I'd have pitting oedema. If I pushed a finger in to my leg/foot it would leave a dent. I was seriously concerned the skin would split and I'd end up with ulcers. The skin was dry and cracked. On top of this my feet were blue, purple and mottled. Constantly freezing cold.
Now my feet are practically normal! I even managed to get a normal pair of boots on yesterday. They are still slightly swollen and at times a tinge of blue creeps in but they are so much better. Still have some swelling around my ankle and a bit on the top of my right foot but they look good!
This is my foot...
My muscle spasms are so much better. Some days I'm not having any at all. These were quite dangerous for me before. They could even throw me over at their strongest. This is another massive thing.
The most exciting thing is walking. I can now get up the stairs. As I said earlier I couldn't when I came back from India but now I can. Using two banisters and really slow, but doable.
I've even taken steps. Yesterday 5 and this morning 5 towards Paul, I turned around and walked another 5 steps back to the bed and sat down. I haven't done that for years.
My balance seems to be slightly better. I've managed to stand for a few seconds without falling over.
Paul's been brilliant. He massages my legs and helps me put them though their paces every morning. He pushes me to do things that I wouldn't have the guts to try to be honest i.e. walking. Encourages me to push a bit further. He's still working from home and cooking and cleaning.
He's much better looking in real life :)))
All in all I'm fine really. I'm pleased with my recovery. Although at 6 weeks post transplant I still have to be really careful. My immune system is still unable to deal with so many viruses and other infections.
I still need to be very careful around people and especially crowded places.
I'm still on anti-fungals and anti-virals and from today I start anti-biotics. Most of these I'm on for 6 months.
It's very early days and I'm only too aware that theses improvements could disappear, come back, disappear, come back before hopefully they return and stay for good. Patience is key.
I'm starting to see a neuro physio today, Tuesday, in Stratford (thats upon Avon not E15!!). I'm looking forward to her input. Should be good.
As I write this today I am 6 weeks and 4 days post transplant and things have gone backwards slightly in terms of taking steps. However, I'm cutting down the medicine I take for my spasms and they are still well under control!
Things are looking good!
So that's it for now. I'll update this blog every 4 weeks. I think that's a good time frame to notice improvements or regressions.
Lots of love, Claire..
Sorry I've been a quiet for a while. Paul nailed it. I've become a bit insular.
I think it's because I've been concentrating on life after chemo which is a real roller coaster.
The Ugly I developed a rash that became really itchy. It started behind my ear and then spread across my face and the top half of my body. It became red and inflamed and only a few days of steroids could bring it under control.
The Bad The tiredness is all consuming and even worse than before I went to India. I could sleep most of the day.
I still have bouts of nausea and this permanent nasty taste in my mouth along with a kind of slimy feeling in it.
I'm definitely weaker than before I went. Things weren't good when I got home I couldn't get up the stairs to bed so slept downstairs on the sofa bed. I struggled to get out to the bathroom and even to use my level access shower by myself.
Paul had to take me in a wheelchair from the house to the car, I just couldn't walk that far, and it's not miles away!
The Good Before I went to India my feet looked a bit like this..
These aren't my feet but almost identical. The swelling would a times extend up to my knees and I'd have pitting oedema. If I pushed a finger in to my leg/foot it would leave a dent. I was seriously concerned the skin would split and I'd end up with ulcers. The skin was dry and cracked. On top of this my feet were blue, purple and mottled. Constantly freezing cold.
Now my feet are practically normal! I even managed to get a normal pair of boots on yesterday. They are still slightly swollen and at times a tinge of blue creeps in but they are so much better. Still have some swelling around my ankle and a bit on the top of my right foot but they look good!
This is my foot...
My muscle spasms are so much better. Some days I'm not having any at all. These were quite dangerous for me before. They could even throw me over at their strongest. This is another massive thing.
The most exciting thing is walking. I can now get up the stairs. As I said earlier I couldn't when I came back from India but now I can. Using two banisters and really slow, but doable.
I've even taken steps. Yesterday 5 and this morning 5 towards Paul, I turned around and walked another 5 steps back to the bed and sat down. I haven't done that for years.
My balance seems to be slightly better. I've managed to stand for a few seconds without falling over.
Paul's been brilliant. He massages my legs and helps me put them though their paces every morning. He pushes me to do things that I wouldn't have the guts to try to be honest i.e. walking. Encourages me to push a bit further. He's still working from home and cooking and cleaning.
All in all I'm fine really. I'm pleased with my recovery. Although at 6 weeks post transplant I still have to be really careful. My immune system is still unable to deal with so many viruses and other infections.
I still need to be very careful around people and especially crowded places.
I'm still on anti-fungals and anti-virals and from today I start anti-biotics. Most of these I'm on for 6 months.
It's very early days and I'm only too aware that theses improvements could disappear, come back, disappear, come back before hopefully they return and stay for good. Patience is key.
I'm starting to see a neuro physio today, Tuesday, in Stratford (thats upon Avon not E15!!). I'm looking forward to her input. Should be good.
As I write this today I am 6 weeks and 4 days post transplant and things have gone backwards slightly in terms of taking steps. However, I'm cutting down the medicine I take for my spasms and they are still well under control!
Things are looking good!
So that's it for now. I'll update this blog every 4 weeks. I think that's a good time frame to notice improvements or regressions.
Lots of love, Claire..
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