Back in hospital on one the Haematology wards. In clinic yesterday the sigmoidoscopy result showed grade 3 GvHD - there are 4 grades apparently. In English these read something like mild, moderate, severe and very severe. My weight had dropped another kilo (4.5kg since this problem started 5 weeks ago). Clearly the oral treatment wasn't working so I was admitted there and then for high dose IVI steroids.
It's a little too soon to know whether this will work. Nevertheless I feel a great sense of relief that we know what the problem is, that it is not something new but rather it is one of the complications of the treatment and lastly that something can be done about it. If the steroid infusion doesn't work there are other treatments, though at the moment I have no idea what they are and rather hope it stays that way. Things can't be good when you feel relieved/glad to be admitted.
Karine has a cold so for the first time ever wasn't able to come into clinic with me, it wouldn't have been fair on other transplant patients in clinic. I haven't seen her since she dropped me at the door at 9 o'clock on Thursday morning, frustrating for both of us. Nevertheless she has been dashing about getting together the things I need in hospital as well as running everything else as usual. The length of stay will depend on how quickly my insides respond to treatment.
The last week or so has been a frustrating worry for both us with worsening symptoms and not knowing what was going on. Some days (more and more in fact) my exercise tolerance had dropped off to pretty well zero, I felt grotty and needed to sleep more. Life was not fun and was starting to feel more like merely existing rather than actually living. The dietician suggested trying a dairy free diet for four days which if it had worked would have been great. Unfortunately things got worse and worse during this time. In desperation Karine kept trying different ideas that the booklets suggested but to no avail, very frustrating.
I was very impressed with how quickly the haematology service got on with the new treatment. Within an hour of seeing the consultant they had found me a room on the Day Case Unit and had given the first steroid infusion, it only takes thirty minutes. The service seems to be both extremely efficient and very responsive to the needs of patients. This was an unplanned admission, the clinic and DCU were both busy but managed to cope with the extra work with seemingly no problem. Both of the haematology wards were full so I spent about twelve hours on the Special Receiving Ward which takes haematology and oncology admissions (mainly emergencies I think) and acts as a buffer in the system for these two services. It seems to work extremely well. Hats off to the NHS once again.
* Beatles - "The White Album" track 1
** Jethro Tull - "Benefit" track 8
Friday 30 October 2015
Saturday 24 October 2015
D+93 - "The Complaints* " a testing week
Having a busy 'up and down' week in several senses of the phrase. The bowel problem has been pretty 'draining' and I haven't felt like doing much. My get up and go had got up and gone until Thursday when I woke up with much more energy - it's probably more accurate to say 'with much less tiredness'. I guess I've been a little anxious about the tests and what they might show. Monday was a Bone Marrow Aspirate test now that I'm three months post transplant.
On Wednesday I had a sigmoidoscopy. This looks inside the colon and enables them to take multiple biopsies for histology. It was a little uncomfortable but not really a problem. The worst aspect of it was taking the 'bowel prep' beforehand and spending hours running backwards and forwards. Not eating for 24 hours wasn't great either. It's a little odd to see your insides on a big TV monitor.
Thursday is haematology clinic day for us transplant patients. Karine and I saw a senior registrar this time. The bone marrow looked normal in the microscope so I'm still in remission. The Minimal Residual Disease test will be back in two to three weeks time - that's the acid test, it can spot trouble on the far distant horizon before anything is visible to the naked eye. I never got the definitive result of the MRD for my previous aspirate, apparently the juniors don't get to see it, but they reassured me that no news in good news. The blood tests continue to gradually improve.
We also discussed the appearance of the bowel as seen at sigmoidoscopy. It seems it would fit with both GvHD and also a late side effect of the chemotherapy and is unlikely to be something new which is a big relief. However the histology result, which will be back next week sometime, is the definitive test and should give a clearer answer.
Made it to rehab physiotherapy despite having had the sigmoidoscopy the afternoon before and enjoyed the exercise and the company.
We also saw the dietician whilst in clinic. My weight is still at an all time low. We're going to try four days dairy free to see if that might help. I'm already avoiding most fruit and have reduced my green vegetable intake so my diet is a little limited at the moment. It would be great if something worked!
The NHS is keeping us both busy and we are keeping the NHS busy!
* "The Complaints" - an Ian Rankin novel
On Wednesday I had a sigmoidoscopy. This looks inside the colon and enables them to take multiple biopsies for histology. It was a little uncomfortable but not really a problem. The worst aspect of it was taking the 'bowel prep' beforehand and spending hours running backwards and forwards. Not eating for 24 hours wasn't great either. It's a little odd to see your insides on a big TV monitor.
Thursday is haematology clinic day for us transplant patients. Karine and I saw a senior registrar this time. The bone marrow looked normal in the microscope so I'm still in remission. The Minimal Residual Disease test will be back in two to three weeks time - that's the acid test, it can spot trouble on the far distant horizon before anything is visible to the naked eye. I never got the definitive result of the MRD for my previous aspirate, apparently the juniors don't get to see it, but they reassured me that no news in good news. The blood tests continue to gradually improve.
We also discussed the appearance of the bowel as seen at sigmoidoscopy. It seems it would fit with both GvHD and also a late side effect of the chemotherapy and is unlikely to be something new which is a big relief. However the histology result, which will be back next week sometime, is the definitive test and should give a clearer answer.
Made it to rehab physiotherapy despite having had the sigmoidoscopy the afternoon before and enjoyed the exercise and the company.
We also saw the dietician whilst in clinic. My weight is still at an all time low. We're going to try four days dairy free to see if that might help. I'm already avoiding most fruit and have reduced my green vegetable intake so my diet is a little limited at the moment. It would be great if something worked!
The NHS is keeping us both busy and we are keeping the NHS busy!
* "The Complaints" - an Ian Rankin novel
Sunday 18 October 2015
D+87 - "Eight Days A Week* "
Got a call at 11.30 on Saturday morning to book a sigmoidoscopy. I was offered a choice of days and times. I've opted for Wednesday 21st, six days after the request was made. What a fantastic service and on a Saturday morning as well. Jeremy Hunt said in July that the NHS was locked into a Monday to Friday mentality, what a load of rubbish.
All junior doctors and nurses on wards and A&E etc work a seven day rota. There is only a tiny minority of consultants who have opted out of weekend working. Patients kept in hospital over the weekend have a lower mortality rate than those discharged, a figure the government chooses to ignore. People admitted on a Sunday have a higher mortality rate than those admitted on a Wednesday. The reason for this is not clear. In some specialities (stroke units and ITU) it seems that the number of nurses is critical. It may be that people admitted on a Sunday are sicker. Just to blame it on a lack of consultants seems like a political move. We need to understand the reasons for the differences in order to sort this out.
Jeremy Hunt makes two assumptions, that fewer doctors at the weekend is the cause of the differences in mortality and that the excess deaths are avoidable. Describing an association between two events is not the same as finding that one event causes the other event. The original researchers who published the article in the BMJ say very clearly that they found an association between admission on different days and mortality but that they didn't address the question of causality. This is an urgent and important problem but vilifying the consultants and the rest of the service isn't the answer.
This is not a problem unique to the NHS either. Research done around the globe shows that most if not all health care services share a very similar problem.
In haematology my experience has been that the on call consultant goes round the wards at the weekend as a matter of course. Juniors, nurses, cleaners, cooks, porters etc are all present. The outpatient unit is routinely open on Saturday mornings. So much for a Monday to Friday mentality.
There is also the 'junior' doctors dispute. The 'normal' working week will rise from 60 hours to 90 hours. The government says that average earnings won't change but it seems doctors will work longer for this same pot of money. Doctors working shorter hours are likely to see there income increase a little and those working long hours in specialities like A&E and anaesthetics will see their incomes fall. 'Junior' doctors (many of whom are actually pretty senior) are the future of the service. It is normal for most of them to put in unpaid extra hours when the job demands it. This is part of the culture of the NHS, a culture the government doesn't seem to understand or value.
If you want to read more about the seven day working dispute and the weekend effect see the BMJ 12th Sept - 'The Editor's Choice' at the beginning and the articles on pages 14 and 22.
* Beatles - 'Beatles For Sale' track 8
All junior doctors and nurses on wards and A&E etc work a seven day rota. There is only a tiny minority of consultants who have opted out of weekend working. Patients kept in hospital over the weekend have a lower mortality rate than those discharged, a figure the government chooses to ignore. People admitted on a Sunday have a higher mortality rate than those admitted on a Wednesday. The reason for this is not clear. In some specialities (stroke units and ITU) it seems that the number of nurses is critical. It may be that people admitted on a Sunday are sicker. Just to blame it on a lack of consultants seems like a political move. We need to understand the reasons for the differences in order to sort this out.
Jeremy Hunt makes two assumptions, that fewer doctors at the weekend is the cause of the differences in mortality and that the excess deaths are avoidable. Describing an association between two events is not the same as finding that one event causes the other event. The original researchers who published the article in the BMJ say very clearly that they found an association between admission on different days and mortality but that they didn't address the question of causality. This is an urgent and important problem but vilifying the consultants and the rest of the service isn't the answer.
This is not a problem unique to the NHS either. Research done around the globe shows that most if not all health care services share a very similar problem.
In haematology my experience has been that the on call consultant goes round the wards at the weekend as a matter of course. Juniors, nurses, cleaners, cooks, porters etc are all present. The outpatient unit is routinely open on Saturday mornings. So much for a Monday to Friday mentality.
There is also the 'junior' doctors dispute. The 'normal' working week will rise from 60 hours to 90 hours. The government says that average earnings won't change but it seems doctors will work longer for this same pot of money. Doctors working shorter hours are likely to see there income increase a little and those working long hours in specialities like A&E and anaesthetics will see their incomes fall. 'Junior' doctors (many of whom are actually pretty senior) are the future of the service. It is normal for most of them to put in unpaid extra hours when the job demands it. This is part of the culture of the NHS, a culture the government doesn't seem to understand or value.
If you want to read more about the seven day working dispute and the weekend effect see the BMJ 12th Sept - 'The Editor's Choice' at the beginning and the articles on pages 14 and 22.
* Beatles - 'Beatles For Sale' track 8
Friday 16 October 2015
D+85 - "Precious Time* "
Saw Prof in the Thursday BMT (Bone Marrow Transplant) clinic. The bowel problem is not improving. My weight is much too low but has been fairly stable over the past week so I'm to have a sigmoidoscopy sometime in the next week or two :-( This may give a definitive answer or may just rule out a number of important alternative diagnoses.
Prof is sceptical that this is GvHD mainly because my skin is fine and so he has reduced the Ciclosporin to 20mg bd. At this rate I'll be off it by the end of the month as planned. My haemoglobin continues to increase, 11.7g/dl today which is quite a big rise. Platelets have improved as well. They tend to go up and down quite a bit anyway whereas changes to haemoglobin are more akin to turning an oil tanker.
Next Monday I have my three month Bone Marrow Aspirate test as part of the Figaro trial. This is the acid test so far as the leukaemia is concerned. We'll get the initial result either at next Thursday's clinic or a week later.
The next couple of weeks is going to be quite busy and important. Actually, what it really is, is an anxious time, waiting to find out what is going on in my colon and bone marrow. I think the bone marrow will be OK. The GI tract problem could be almost anything. I'm trying not to speculate and so far have resisted the temptation to google it! Who needs Google anyway when your imagination can run wild at three in the morning!
On the positive side I'm still managing some exercise pretty well every day and feel stronger for it. My blood counts are improving, my skin has settled down and I've got some rather wispy eyebrows! I shave my upper lip two to three times a week and there is a hint of faint hair growth on my head . You need excellent vision, good light and plenty of imagination to see it!
*Van Morrison "Back on Top" track 9
Prof is sceptical that this is GvHD mainly because my skin is fine and so he has reduced the Ciclosporin to 20mg bd. At this rate I'll be off it by the end of the month as planned. My haemoglobin continues to increase, 11.7g/dl today which is quite a big rise. Platelets have improved as well. They tend to go up and down quite a bit anyway whereas changes to haemoglobin are more akin to turning an oil tanker.
Next Monday I have my three month Bone Marrow Aspirate test as part of the Figaro trial. This is the acid test so far as the leukaemia is concerned. We'll get the initial result either at next Thursday's clinic or a week later.
The next couple of weeks is going to be quite busy and important. Actually, what it really is, is an anxious time, waiting to find out what is going on in my colon and bone marrow. I think the bone marrow will be OK. The GI tract problem could be almost anything. I'm trying not to speculate and so far have resisted the temptation to google it! Who needs Google anyway when your imagination can run wild at three in the morning!
On the positive side I'm still managing some exercise pretty well every day and feel stronger for it. My blood counts are improving, my skin has settled down and I've got some rather wispy eyebrows! I shave my upper lip two to three times a week and there is a hint of faint hair growth on my head . You need excellent vision, good light and plenty of imagination to see it!
*Van Morrison "Back on Top" track 9
Sunday 11 October 2015
D+80 - "Hey.. (Dig the Slowness)* "
This week has been better than last week thank goodness. The steroids have definitely been helping to some extent. Energy level and appetite have both improved. In the last two days my weight has slowly crept up a little but it is still about 1.5kg down compared with two weeks ago.
In clinic on Thursday Karine and I saw one of the registrars who thinks the bowel problem is probably due to GvHD. He said that it would need a sigmoidoscopy with biopsies to confirm it and would discuss this at the post clinic debrief with the consultants. The week before Prof seemed to be saying that I would need a sigmoidoscopy etc if the treatment didn't work which I took to mean I wouldn't need one if the symptoms improved. We'll see. Perhaps I got the wrong end of the stick!
The treatment has been left unchanged. Someone would have called after the debrief if there was to be a change. Due back in clinic next Thursday as usual.
The other news from clinic is that the platelets have picked up over the past two weeks. Also haemoglobin is slowly slowly increasing. It was 111g/L (11.1 in old money!) which is the highest it has been since I was diagnosed. The underlying trend is one of a gradual increase which I see as being really good news indeed. The graft has really got its feet under the table and is getting down to some serious work. I hope I'm not reading too much into this. If all goes well then in several months time I will no longer be anaemic.
I'm very lucky that my sister and I are the same blood group. I recently read of another patient who, having had a sibling donor graft but with a different blood group, is needing regular blood transfusions every few weeks whilst waiting for the graft to replace all the 'old' blood. I hadn't realised how lucky I was that Lucy and I are the same blood group, if anyone with leukaemia can be said to be 'lucky'.
I went back to rehab this week and enjoyed the exercise and talking with people who are all going through the same ups and downs.
On Friday Karine and I went to Rufford Abbey and walked around the park before having lunch in the restaurant. It was a beautiful warm autumn day. We walked round the lake and later on through the gardens. The trees were especially lovely although I suspect they will be even better in a week. There were lots of birds on the lake including some large ducks with very dark iridescent green feathers, Cayuga ducks we discovered later. It was marvellous just to get out and do something together.
Getting back to normal life is a very slow business and it occurs in stops and starts but it is progress.
* Donovan "Fairytale" final track
In clinic on Thursday Karine and I saw one of the registrars who thinks the bowel problem is probably due to GvHD. He said that it would need a sigmoidoscopy with biopsies to confirm it and would discuss this at the post clinic debrief with the consultants. The week before Prof seemed to be saying that I would need a sigmoidoscopy etc if the treatment didn't work which I took to mean I wouldn't need one if the symptoms improved. We'll see. Perhaps I got the wrong end of the stick!
The treatment has been left unchanged. Someone would have called after the debrief if there was to be a change. Due back in clinic next Thursday as usual.
The other news from clinic is that the platelets have picked up over the past two weeks. Also haemoglobin is slowly slowly increasing. It was 111g/L (11.1 in old money!) which is the highest it has been since I was diagnosed. The underlying trend is one of a gradual increase which I see as being really good news indeed. The graft has really got its feet under the table and is getting down to some serious work. I hope I'm not reading too much into this. If all goes well then in several months time I will no longer be anaemic.
I'm very lucky that my sister and I are the same blood group. I recently read of another patient who, having had a sibling donor graft but with a different blood group, is needing regular blood transfusions every few weeks whilst waiting for the graft to replace all the 'old' blood. I hadn't realised how lucky I was that Lucy and I are the same blood group, if anyone with leukaemia can be said to be 'lucky'.
I went back to rehab this week and enjoyed the exercise and talking with people who are all going through the same ups and downs.
On Friday Karine and I went to Rufford Abbey and walked around the park before having lunch in the restaurant. It was a beautiful warm autumn day. We walked round the lake and later on through the gardens. The trees were especially lovely although I suspect they will be even better in a week. There were lots of birds on the lake including some large ducks with very dark iridescent green feathers, Cayuga ducks we discovered later. It was marvellous just to get out and do something together.
Getting back to normal life is a very slow business and it occurs in stops and starts but it is progress.
* Donovan "Fairytale" final track
Monday 5 October 2015
D+74 - "Living in These Hard Times* "
Having had a rough few days sitting on the loo half the time the steroids seem to be starting to work. Yesterday was a little better and today better still.
We went to the Day Case Unit this morning and saw the Bone Marrow Transplant nurse Lynne. My blood count is OK and the tests from the end of last week, liver and kidneys, are reasonable. I don't have C Difficile (a v nasty infection of the bowel) so the antibiotic has been stopped. Lynne had a word with Prof Russell and my Ciclosporin has been reduced from 50mg twice daily to 30mg twice daily. This means that I'm back on track to come off this by the end of the month all being well. For the moment I stay on the steroids. It seems this may be a touch of GvHD of the bowel. We'll see what Prof Russell thinks when we go back to clinic in three days time.
A small dose of GvHD is not a completely bad thing. It means that some of the cells in my new bone marrow (T Lymphocytes) are attacking me. Reducing the immunosuppression (Ciclosporin) can precipitate this kind of reaction. The steroids damp this down. The good thing is the T cells also recognise any residual Leukaemia cells and attack them. The really important thing here is that having some GvHD is associated with a lower relapse rate so Prof's opinion as to what is going on is important! Nevertheless GvHD definitely isn't fun.
My energy level has risen a little so I'm doing a little more exercise having not done so much in the past week or so. I should be well enough to go back to rehab on Thursday. Unfortunately my weight has been falling like a stone, down 1.5kg in the last ten days. Hopefully it will start to increase in the coming week(s).
* Jethro Tull - "Heavy Horses" track 10
We went to the Day Case Unit this morning and saw the Bone Marrow Transplant nurse Lynne. My blood count is OK and the tests from the end of last week, liver and kidneys, are reasonable. I don't have C Difficile (a v nasty infection of the bowel) so the antibiotic has been stopped. Lynne had a word with Prof Russell and my Ciclosporin has been reduced from 50mg twice daily to 30mg twice daily. This means that I'm back on track to come off this by the end of the month all being well. For the moment I stay on the steroids. It seems this may be a touch of GvHD of the bowel. We'll see what Prof Russell thinks when we go back to clinic in three days time.
A small dose of GvHD is not a completely bad thing. It means that some of the cells in my new bone marrow (T Lymphocytes) are attacking me. Reducing the immunosuppression (Ciclosporin) can precipitate this kind of reaction. The steroids damp this down. The good thing is the T cells also recognise any residual Leukaemia cells and attack them. The really important thing here is that having some GvHD is associated with a lower relapse rate so Prof's opinion as to what is going on is important! Nevertheless GvHD definitely isn't fun.
My energy level has risen a little so I'm doing a little more exercise having not done so much in the past week or so. I should be well enough to go back to rehab on Thursday. Unfortunately my weight has been falling like a stone, down 1.5kg in the last ten days. Hopefully it will start to increase in the coming week(s).
* Jethro Tull - "Heavy Horses" track 10
Thursday 1 October 2015
D+70 - "On the Run* "
Just been to haematology clinic. The main problem is my insides which seem to be getting worse not better, now with added blood and mucous. My weight is down about a kilo, appetite not great and feeling much more tired.
Prof Russell has left the immunosuppressant dose alone and added in a steroid and another antibiotic. This could be an infection or GvHD (graft versus host disease) or a drug side effect (not so likely) or something completely different! We didn't get round to discussing blood counts etc except to say that my liver is a little bit 'off' which could mean almost anything.
I'm back in clinic on Monday as well as Thursday next week in order to check that the situation is not deteriorating too much. Unless it settles quickly it may take a little time to work out what is going on. I've cancelled rehab for today, too much hard work!
Went to ENT clinic two days ago and the outcome is a hearing aid for my right ear. So now I wait to go back to have a mold of my right ear canal taken, then back again for the actual fitting. At least this is a simple and safe solution.
Having been doing so well it is not fun slipping back like this. I have lost some of the high hopes I had that I would continue to steadily improve. I know I had been warned there would setbacks but it still isn't easy. Have started to 'live' a little and do a few normal things it feels as though I'm going back to just 'existing' again. The uncertainty about the diagnosis definitely doesn't help either. I need to be patient and focus on the positives. I'm still doing a lot better than average. I'm lucky to be here. It's early days.
A funny thing, my eyebrows have started to grow back, very pale and white, so they don't really show much but at least one bit of me is beginning to behave normally again!
* Pink Floyd - "Dark Side of the Moon" - 2nd track
Prof Russell has left the immunosuppressant dose alone and added in a steroid and another antibiotic. This could be an infection or GvHD (graft versus host disease) or a drug side effect (not so likely) or something completely different! We didn't get round to discussing blood counts etc except to say that my liver is a little bit 'off' which could mean almost anything.
I'm back in clinic on Monday as well as Thursday next week in order to check that the situation is not deteriorating too much. Unless it settles quickly it may take a little time to work out what is going on. I've cancelled rehab for today, too much hard work!
Went to ENT clinic two days ago and the outcome is a hearing aid for my right ear. So now I wait to go back to have a mold of my right ear canal taken, then back again for the actual fitting. At least this is a simple and safe solution.
Having been doing so well it is not fun slipping back like this. I have lost some of the high hopes I had that I would continue to steadily improve. I know I had been warned there would setbacks but it still isn't easy. Have started to 'live' a little and do a few normal things it feels as though I'm going back to just 'existing' again. The uncertainty about the diagnosis definitely doesn't help either. I need to be patient and focus on the positives. I'm still doing a lot better than average. I'm lucky to be here. It's early days.
A funny thing, my eyebrows have started to grow back, very pale and white, so they don't really show much but at least one bit of me is beginning to behave normally again!
* Pink Floyd - "Dark Side of the Moon" - 2nd track
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