Back to clinic yesterday. I'm no longer anaemic, the EPO injections have sorted out my haemoglobin.
The platelet count is another story - they have dropped a little further so the EPO injections are suspended for the moment in case they are causing the problem. Also I'm now on half dose junior aspirin - aspirin is an anti platelet drug - and I've been told to delay next week's third round of infant injections - they too have sometimes been associated with reduced platelets - all in all a mystery so it's back to clinic next week.
Meanwhile my insides are revolting again - GvHD of the colon. The immunosuppressant treatment that was controlling this hasn't been changed in the last three weeks so another mystery - why are my new T lymphocytes attacking me? As result of this my weight has dropped a little but seems stable again.
Despite all this I feel as well as I've felt for quite some time - thanks to the increased haemoglobin I presume unless the real reason is another mystery!
This last Tuesday Karine and our neighbour Janet ran a Macmillan coffee morning and also an afternoon session as part of Macmillan's 'World's Largest Coffee Morning. They have raised about £480 so far. The surplus cakes went to the school where Janet works and to the dept of Haematology!
Beatles - "Magical Mystery Tour" 1967 - track 1
Friday 23 September 2016
Wednesday 21 September 2016
D+13 months - "A Perfect Day" *
Actually, "a perfect weekend" would be a more accurate title!
The "Blood Sweat and Cures" walk in the Derbyshire Dales took place last weekend and was a great success. We were incredibly fortunate with the weather, two beautiful days, sunshine, no rain and a light breeze, wonderful. There were about 22 people walking on Saturday and 14 on Sunday. The overall distance was about 23 miles. I managed about 5 miles a day which I feel very smug about! - got some aching calf muscles to prove it.
As well as local friends we had friends and family from London, Bath and Shrewsbury. So far we have raised over £1,400 for the "Nottingham Leukaemia Appeal". A big thank you to everyone who took part, to everyone who contributed to the NLA, to Nigel and Richard for driving support and to Mike, Lucy and Karine for organising it all. The JustGiving site will stay open till about 29th September.
Karine has put some of the photographs on her Facebook page. Here are a few 'before and after' group shots.
- Saturday:- Great Longstone to Birchover via Chatsworth
- Sunday:- Birchover to Great Longstone via Robin Hood's Stride and Lathkill Dale
Lou Read "Transformer" track 3 though I could equally have chosen 'A Walk on the Wild Side' from the same album
The "Blood Sweat and Cures" walk in the Derbyshire Dales took place last weekend and was a great success. We were incredibly fortunate with the weather, two beautiful days, sunshine, no rain and a light breeze, wonderful. There were about 22 people walking on Saturday and 14 on Sunday. The overall distance was about 23 miles. I managed about 5 miles a day which I feel very smug about! - got some aching calf muscles to prove it.
As well as local friends we had friends and family from London, Bath and Shrewsbury. So far we have raised over £1,400 for the "Nottingham Leukaemia Appeal". A big thank you to everyone who took part, to everyone who contributed to the NLA, to Nigel and Richard for driving support and to Mike, Lucy and Karine for organising it all. The JustGiving site will stay open till about 29th September.
Karine has put some of the photographs on her Facebook page. Here are a few 'before and after' group shots.
- Saturday:- Great Longstone to Birchover via Chatsworth
- Sunday:- Birchover to Great Longstone via Robin Hood's Stride and Lathkill Dale
Lou Read "Transformer" track 3 though I could equally have chosen 'A Walk on the Wild Side' from the same album
Friday 16 September 2016
D+13 months - "Walk Of Life" *
Another Thursday, another clinic visit. Mixed news, the haemoglobin has crept up to 126 thanks to the EPO injections. 130 is normal so 126 is OK. The EPO has been reduced to once a week, they don't want my blood getting too thick because of the risk of a clot.
However my platelets which having been bobbing around at about 50 for a couple of months have fallen to 32 which explains why I bruise and bleed so easily. The normal range is 150-450. No one seems to know why they've dropped though plenty of theories abound - GvHD, childhood immunisations, a viral infection, the immunosuppressants, EPO, inflammation etc etc - who knows! So its back to clinic next week to recheck them. The other treatments, ciclosporin and steroids, remain unchanged for the moment. The GvHD is under control but only just!
On a cheerier note the weather looks set fair for the walk in the Derbyshire Dales this weekend, dry and not too warm although it is throwing it down as I write - Friday morning! There are 24 people walking on Saturday and 17 on Sunday. I am not able to do the whole walk, 11-12 miles each day is just too much, and so will dip in and out. So far we've raised £1,140 for blood cancer research in Nottingham, £970 on the current page and £170 on the previously expired page. The JustGiving page will stay open until about 29th September.
Blood Sweat and Cures
* Dire Straits, "Brothers in Arms" track 3
However my platelets which having been bobbing around at about 50 for a couple of months have fallen to 32 which explains why I bruise and bleed so easily. The normal range is 150-450. No one seems to know why they've dropped though plenty of theories abound - GvHD, childhood immunisations, a viral infection, the immunosuppressants, EPO, inflammation etc etc - who knows! So its back to clinic next week to recheck them. The other treatments, ciclosporin and steroids, remain unchanged for the moment. The GvHD is under control but only just!
On a cheerier note the weather looks set fair for the walk in the Derbyshire Dales this weekend, dry and not too warm although it is throwing it down as I write - Friday morning! There are 24 people walking on Saturday and 17 on Sunday. I am not able to do the whole walk, 11-12 miles each day is just too much, and so will dip in and out. So far we've raised £1,140 for blood cancer research in Nottingham, £970 on the current page and £170 on the previously expired page. The JustGiving page will stay open until about 29th September.
Blood Sweat and Cures
A big thank you to everyone for your marvellous generosity.
* Dire Straits, "Brothers in Arms" track 3
Thursday 1 September 2016
D+13 months - "The View from the Afternoon" *
Karine took me to clinic this morning to see Prof Russell. The fatigue is gradually lifting and my Achilles tendon continues to very very slowly improve. At the last visit the EPO injection which stimulates the bone marrow to produce more red cells was doubled and my Hb is now gradually improving at last. If the improvement carries on I'll cancel the cardiology referral as and when it comes through.
Meantime the plan is to reduce the Ciclosporin because reducing the steroids causes the GvHD to flare up. The Ciclosporin is now down to 30mg twice daily. At the present rate I could be off it altogether in a couple months time. However there was a similar timetable for stopping it exactly a year ago and then GvHD kicked in so anything could happen and something probably will happen - it's back to trying to be a patient patient again!
We also visited the practice nurse this morning and I had a second lot of baby immunisations - four needles! I had already given myself two EPO injections before setting off and when we got to hospital there were blood tests, another needle - all good fun!
During the past few weeks we have had a few days in London with Charlotte, Stewart and Eden and then a week in a bungalow in north Norfolk with Eden. We were fortunate with the weather and spent the time going to the beach, a boat trip to see the seals at Blakeney point, a steam train ride, a visit to a circus and a farm, a busy week full of fun. It is so good to get away for a short while.
The JustGiving page has expired all on its own so we've had to create a new one (with a similar name). This means the link on previous blogs doesn't work. So far we had raised £170 on the old page. The new page has only just been opened so shows £0 at the moment but all the money from both pages will go to "Notts Leukaemia Research" Here is the new link....
Meantime the plan is to reduce the Ciclosporin because reducing the steroids causes the GvHD to flare up. The Ciclosporin is now down to 30mg twice daily. At the present rate I could be off it altogether in a couple months time. However there was a similar timetable for stopping it exactly a year ago and then GvHD kicked in so anything could happen and something probably will happen - it's back to trying to be a patient patient again!
We also visited the practice nurse this morning and I had a second lot of baby immunisations - four needles! I had already given myself two EPO injections before setting off and when we got to hospital there were blood tests, another needle - all good fun!
During the past few weeks we have had a few days in London with Charlotte, Stewart and Eden and then a week in a bungalow in north Norfolk with Eden. We were fortunate with the weather and spent the time going to the beach, a boat trip to see the seals at Blakeney point, a steam train ride, a visit to a circus and a farm, a busy week full of fun. It is so good to get away for a short while.
The JustGiving page has expired all on its own so we've had to create a new one (with a similar name). This means the link on previous blogs doesn't work. So far we had raised £170 on the old page. The new page has only just been opened so shows £0 at the moment but all the money from both pages will go to "Notts Leukaemia Research" Here is the new link....
Blood, Sweat and Cures
* Arctic Monkeys - from their album "Whatever People Say I Am, That's What I'm Not" - track one
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