A long gap since the last blog, mainly because things have been going well and there is not a lot to report. Karine & I went to clinic last Thursday and the steroids have been reduced yet again - now down to Prednisolone 2mg daily as of today. The other steroids and the ciclosporin remain the same.
They don't want to see me in clinic for three weeks, the longest gap between appointments so far. Last summer and early autumn it was twice a week
The plan is to come off the last 2mg of Prednisolone much more slowly than when they tried previously, hence the title of this blog - 'Go Down Easy". If that is successful I'll be off prednisolone in a couple of months or so. Hopefully I will then start to lose the puffy 'moon' face that steroids cause and my skin will start to be less fragile. The other steroid, Budesonide, isn't supposed to be absorbed by the body so shouldn't be causing the side effects associated with Prednisolone - I wonder if my body knows it's not supposed to absorb all this stuff I'm swallowing!
Karine's back and shoulder are improving at last and my Achilles tendon is slowly healing, it is just so slow and so frustrating.
We are getting on with the planning of the walk in the Derbyshire Dales on the 17th & 18th of September. We want a title for the walk if possible. So far all we've come up with is "The Bloody Walk" because it will be in aid of a local blood cancer research charity - we need something better - suggestions please!
* John Martin - "Solid Air" - track "
Tuesday, 28 June 2016
Friday, 10 June 2016
D+323 - "Temporary Like Achilles" *
Another fortnightly clinic appointment for Karine and me. It is a very friendly clinic and as usual we bumped into a couple of fellow sufferers so a good opportunity to catch up and to share experiences. It's a clinic exclusively for Stem Cell transplant patients so the faces of the regulars are quite familiar. The department does over 130 transplants a year - perhaps more now, I'm not sure - so there must be a lot of patients who don't attend as regularly as we do, hopefully that will be us in a little while. As well as seeing the consultant the transplant coordinator nurse is always around and is available for help and advice - nothing is too much trouble for her. We also see the dietician quite often but as my weight slowly increases this is becoming less frequent. It is rare to be kept waiting very long. The whole trip to the hospital usually takes about an hour and quarter from leaving home to arriving home again. All in all an excellent service.
From the AML point of view everything has been going very well in recent weeks, the GvHD seems to be under control and the awful fatigue that was occurring for a day or so most weeks has disappeared. The blood counts having fallen a little in the last month, but I'm not aware of this. Whether this is a trend or just part of the normal variation that occurs in any biological system is too soon to say.
One of the steroids, prednisolone, has been reduced to 3mg which is a really low dose. I'm still on different steroid, the steroid foam treatment and ciclosporin, but am slowly heading in the right direction. The weekly tablet load is now just below 150 - much better than the 250+ of a few months ago! - and there is the prospect of this number continuing to gradually fall in the coming months. I've been here before - last September I was within a few weeks of coming off ciclosporin and not a steroid in sight and then GvHD happened.
Meanwhile I hobble about the place, the Achilles tendon isn't really improving very much yet. Karine and I had a wonderful weekend on the Yorkshire Cumbria border with a group of friends. The weather was perfect - warm and sunny. Everyone went for walks and visits and I enjoyed the garden and the view! It was a great boost to be away for a few days.
Next week we are going to visit my uncle and aunt halfway down the M1 - just for a day - we haven't seen them for two years - two outings in two weeks - wow!
*Bob Dylan - "Blonde on Blonde" - track 10
From the AML point of view everything has been going very well in recent weeks, the GvHD seems to be under control and the awful fatigue that was occurring for a day or so most weeks has disappeared. The blood counts having fallen a little in the last month, but I'm not aware of this. Whether this is a trend or just part of the normal variation that occurs in any biological system is too soon to say.
One of the steroids, prednisolone, has been reduced to 3mg which is a really low dose. I'm still on different steroid, the steroid foam treatment and ciclosporin, but am slowly heading in the right direction. The weekly tablet load is now just below 150 - much better than the 250+ of a few months ago! - and there is the prospect of this number continuing to gradually fall in the coming months. I've been here before - last September I was within a few weeks of coming off ciclosporin and not a steroid in sight and then GvHD happened.
Meanwhile I hobble about the place, the Achilles tendon isn't really improving very much yet. Karine and I had a wonderful weekend on the Yorkshire Cumbria border with a group of friends. The weather was perfect - warm and sunny. Everyone went for walks and visits and I enjoyed the garden and the view! It was a great boost to be away for a few days.
Next week we are going to visit my uncle and aunt halfway down the M1 - just for a day - we haven't seen them for two years - two outings in two weeks - wow!
*Bob Dylan - "Blonde on Blonde" - track 10
Saturday, 4 June 2016
D+317 - "Sitting in the Morning Sun" *
A week without a clinic appointment feels like a week of liberation. Another good week with only a couple of minor glitches. Oral thrush necessitated a call to our wonderful trial nurse who oversees the Figaro trial I am on. A quick trip to the hospital to collect some medicine and I'm on the mend!
More irritating, my left Achilles' tendon decided to start playing up two evenings ago. I had discovered that with considerable effort I could run upstairs so had started doing this a couple of days beforehand. Unfortunately one of the many side effects of steroids is a weakening of the tendons and it seems the left one objected to the stairs. It is only a minor strain but curtails my walking - grrr!
This is all rather aggravating, Karine and I are away in north West Yorkshire for the weekend with a group of friends celebrating two sixtieth birthdays - not ours I'm afraid, they are long past - our first nights away from Nottingham in fourteen months - another milestone on the path of recovery. The weather is lovely and there is Hawthorne blossom and cow parsley in flower everywhere - the countryside is 'dressed for a wedding' as my sister says. The aggravation is that I can't join in the walks but just to have the freedom to be away from home is brilliant. K and I have both felt very trapped by the need to stay at home.
We are continuing with the planning of the walk in mid September. Hopefully resting this silly ankle over the weekend will allow me to get properly mobile again next week so that we can recce the next section.
Meanwhile, 'I am sitting in the morning sun' reading Clive James' new book, all about facing death from cancer, (some sort of leukaemia I think). It should be rather morbid but so far it isn't at all. He comes up with some excellent images and interesting insights which seem all too relevant. No doubt I am seeing it differently because of the events of the past year, I find it difficult to imagine how it would have struck me in my pre-leukaemia days so am just enjoying the moment.
Otis Redding - Opening line of "Dock of the Bay"
More irritating, my left Achilles' tendon decided to start playing up two evenings ago. I had discovered that with considerable effort I could run upstairs so had started doing this a couple of days beforehand. Unfortunately one of the many side effects of steroids is a weakening of the tendons and it seems the left one objected to the stairs. It is only a minor strain but curtails my walking - grrr!
This is all rather aggravating, Karine and I are away in north West Yorkshire for the weekend with a group of friends celebrating two sixtieth birthdays - not ours I'm afraid, they are long past - our first nights away from Nottingham in fourteen months - another milestone on the path of recovery. The weather is lovely and there is Hawthorne blossom and cow parsley in flower everywhere - the countryside is 'dressed for a wedding' as my sister says. The aggravation is that I can't join in the walks but just to have the freedom to be away from home is brilliant. K and I have both felt very trapped by the need to stay at home.
We are continuing with the planning of the walk in mid September. Hopefully resting this silly ankle over the weekend will allow me to get properly mobile again next week so that we can recce the next section.
Meanwhile, 'I am sitting in the morning sun' reading Clive James' new book, all about facing death from cancer, (some sort of leukaemia I think). It should be rather morbid but so far it isn't at all. He comes up with some excellent images and interesting insights which seem all too relevant. No doubt I am seeing it differently because of the events of the past year, I find it difficult to imagine how it would have struck me in my pre-leukaemia days so am just enjoying the moment.
Otis Redding - Opening line of "Dock of the Bay"
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