Back inside again as of two days ago, sudden onset temperature and feeling unwell - the same as at the beginning of the month. They are treating me for septicaemia whilst waiting for the full lab results.
They are also conducting a thorough hunt around for possible causes before assuming the bug is from the bowel. Tomorrow it's an ultrasound of the abdomen looking for gall bladder trouble and an echocardiogram in the next day or so to rule out a possible heart infection - pretty unlikely I think (and hope!) - but important not to miss it. Samples have been taken from all sorts of places but nothing else has shown up so far apart from a bug growing in the bloodstream.
I'm still on the receiving ward which is not the quietest place to be. Nobody else seems to want me! Haematology is full.
* Gordon Lightfoot - "Back Here On Earth" 1969 album first track
Wednesday 30 March 2016
Tuesday 22 March 2016
D+243 - "Time present and time past..* "
Had two haematology clinic visits since the last blog entry. The conclusion is that the septicaemia was caused by 'translocation' (Prof's word for this process) of bugs from the colon to the blood stream and that the GvHD needs to be better controlled to prevent this. The steroids and ciclosporin have both been increased slightly a week last Thursday and the new doses have been maintained this week.
Prof doesn't want to see me for a fortnight, yes a fortnight, which is a big psychological step. Up until now there have been weekly or twice weekly visits since the transplant eight months ago. Hopefully this is the start of less dependence on the hospital. However the road to recovery is full of twists and turns so anything could happen and probably will.
At the most recent mindfulness session we talked about recovery. We are a mixed group with all different types of cancer. They decided that most of us are physically unlikely to get back to how we were before the cancer and that even if we did so then from the psychological point of view we will be different because of the whole traumatic experience. We are all moving towards a 'new normal' but in view of the bumps in the road to recovery it may be sometime before the 'new normal' emerges.
Fatigue is still a big problem and making plans is an act of faith. Friday should have been a day of gentle walking in Clumber Park in north Notts but I awoke feeling very tired and with a slight temperature so that was the end of that. Today I'm OK again, don't know why, that's just how it is! Very frustrating, grrrr! Nevertheless we are going to make some plans for the summer and hope for the best.
* Opening line of the Four Quartets, TS Eliot
Prof doesn't want to see me for a fortnight, yes a fortnight, which is a big psychological step. Up until now there have been weekly or twice weekly visits since the transplant eight months ago. Hopefully this is the start of less dependence on the hospital. However the road to recovery is full of twists and turns so anything could happen and probably will.
At the most recent mindfulness session we talked about recovery. We are a mixed group with all different types of cancer. They decided that most of us are physically unlikely to get back to how we were before the cancer and that even if we did so then from the psychological point of view we will be different because of the whole traumatic experience. We are all moving towards a 'new normal' but in view of the bumps in the road to recovery it may be sometime before the 'new normal' emerges.
Fatigue is still a big problem and making plans is an act of faith. Friday should have been a day of gentle walking in Clumber Park in north Notts but I awoke feeling very tired and with a slight temperature so that was the end of that. Today I'm OK again, don't know why, that's just how it is! Very frustrating, grrrr! Nevertheless we are going to make some plans for the summer and hope for the best.
* Opening line of the Four Quartets, TS Eliot
Wednesday 9 March 2016
D+230 - "When I get home * " and "Carry that Weight** "
Karine picked me up and I came home
yesterday afternoon. The bug turned out to be an E. coli so presumably it
escaped from my GI tract into my blood stream. The final diagnosis was
bacterial septicaemia, a mild episode of it fortunately. Haematology are
brilliant at picking up and treating these infections really quickly.
They aim to have the infection screen (blood tests and swabs essentially)
and the antibiotics started within an hour of arriving at hospital. The
timing and speed make a critical difference to the outcome. We had phoned up the 24hr emergency haematology line and had arrived at the Day Case Unit a little before 8am. It was already full of nurses and reception staff and the first few patients were just arriving. Official start time is 8 o'clock. Despite not having a booked slot I was taken straight through from the waiting area to the clinical area. I'll repeat what I've just said above, haematology are brilliant.
** Beatles - "Abbey Road" track 15
I was going to use Steely Dan's "Home at Last" from their album Aja but a couple of Beatles tracks seemed more appropriate in view of George Martin's death earlier today.
After three
days of IV antibiotics I was much better and am now on oral treatment for a
week. During my stay I was in three different wards (not counting
spending the first morning in the haematology day case unit). There were
no free beds in haematology. I'm now familiar with the Burns Unit and one
of the Thoracic wards as well as the Specialist Receiving Unit.
I'm going to
discuss this episode in clinic tomorrow to see whether anything can be done to
prevent a repeat. I suspect the answer will be "very little".
One interesting
aside, as part of the hunt for a cause, is that I had a non-urgent chest X-ray
- i.e. they expected it to be normal (it was). This was requested on
Friday. X-ray was pretty busy so my turn for an X-ray came round at
3.30am on Saturday morning. I was woken up and told I was going for an
X-ray, not a very patient friendly hour. To be fair I was also told that
in view of the hour I could refuse and it would be done later in the day if I
preferred. I wanted to get the diagnosis sorted out as soon as possible so off we
went!
I asked the
porter who wheeled me down to radiology about this and he said that routine
X-rays at 3.30am on a Saturday were not unusual. In July 2015 Jeremy Hunt
accused the NHS of being wedded to a "Monday to Friday 9-5 culture".
If I'd had his phone number I'd have given him a call there and then to
tell him that I was having a non-urgent investigation at 3.30am and what's more
it was at the weekend!
Frustratingly,
I've lost nearly 2kg during the past few days. It takes ages to put
weight on and is so easy to lose it when you're unwell. I'm now about 4
or 5kg underweight - grrrr.
Whilst in
hospital you have to have a blood thinning injection every day so another
legacy from the last few days is some lovely multi-coloured bruises around my
middle!
*Beatles - "Hadr Day's Night" track 11** Beatles - "Abbey Road" track 15
I was going to use Steely Dan's "Home at Last" from their album Aja but a couple of Beatles tracks seemed more appropriate in view of George Martin's death earlier today.
Saturday 5 March 2016
D+226 - "Inside* "
Back in hospital again, anything to get out of a Mothering Sunday party at Charlotte and Stewart's!!
Spiked a temperature of 39C during Thursday night and ended up ringing the 24hr haematology emergency line and being admitted. Had an armful of bloods, chest X-ray and swabs from various parts of my anatomy yesterday and have just learnt that there is a bug in my blood stream - a gram negative rod for those with a clinical background - so this is the cause of the pyrexia and and also explains why I keep dropping my BP. Systolic this morning was 85mmHg. My IV antibiotics are being changed so hopefully I'll feel much better within a day or two.
Till then I'm stuck in here with my temperature going up and down like a yoyo. My concentration is not great but I've managed to read a chunk of Little Dorrit. Dickens has great fun poking fun at self important people, bankers, snobs, the rich and above all government ministries.
The Circumlocution Office is a wonderful invention. Run by a family called Barnacle it is designed to slow down the ship of state and bring it to a complete halt whenever possible.
Its purpose is is to teach everyone in government 'the one sublime principle' of government, 'how not to do it'. It has its finger in 'the largest public pie and the smallest public tart' and as Dickens says everything has to pass through the Circumlocution Office except those matters which disappear into the Office and never come out again. The other family involved in running the Office are the Stiltstalking family. As yet I haven't managed to work out why he chose this name for them other than that people on stilts can walk around head and shoulders above the rest of us and feel very superior as a result, any better suggestions anyone?
*Sting "Sacred Love" track 1 and also Jethro Tull "Benefit" track 8
Spiked a temperature of 39C during Thursday night and ended up ringing the 24hr haematology emergency line and being admitted. Had an armful of bloods, chest X-ray and swabs from various parts of my anatomy yesterday and have just learnt that there is a bug in my blood stream - a gram negative rod for those with a clinical background - so this is the cause of the pyrexia and and also explains why I keep dropping my BP. Systolic this morning was 85mmHg. My IV antibiotics are being changed so hopefully I'll feel much better within a day or two.
Till then I'm stuck in here with my temperature going up and down like a yoyo. My concentration is not great but I've managed to read a chunk of Little Dorrit. Dickens has great fun poking fun at self important people, bankers, snobs, the rich and above all government ministries.
The Circumlocution Office is a wonderful invention. Run by a family called Barnacle it is designed to slow down the ship of state and bring it to a complete halt whenever possible.
Its purpose is is to teach everyone in government 'the one sublime principle' of government, 'how not to do it'. It has its finger in 'the largest public pie and the smallest public tart' and as Dickens says everything has to pass through the Circumlocution Office except those matters which disappear into the Office and never come out again. The other family involved in running the Office are the Stiltstalking family. As yet I haven't managed to work out why he chose this name for them other than that people on stilts can walk around head and shoulders above the rest of us and feel very superior as a result, any better suggestions anyone?
*Sting "Sacred Love" track 1 and also Jethro Tull "Benefit" track 8
Thursday 3 March 2016
D+224 - "Travel So Far* " and "I'm Lucky** "
It is now over seven months since the transplant - 32 weeks to be precise - it seems a long time ago, so much has happened in that time, so many ups and downs; setbacks and advances. I've had so much support during this time especially from Karine - I count myself very lucky hence the second title of this blog taken from a lovely collection of Joan Armatrading's early recordings.
Bone Marrow Transplant clinic again this morning; the GvHD is moderately well under control so the Ciclosporin has been reduced a little further, this is the stuff causing numbness in my feet and hands and upsetting my sense of taste so I'm delighted to have the dose reduced.
Haemoglobin and platelet levels have both risen a little - this could be an effect of the Epo injections, I had the third one this morning, equally it could be chance, it will take two or three weeks to know. The weekly visits and blood tests seem set to continue for a little while longer.
Prof checked the vitamin D level and it is low presumably because I've hardly seen any sun in the past year, so it looks like more tablets may be on the way :-( the weekly total has soared recently and is back over two hundred. This is partly because of reducing the dose of various tablets. For example the Ciclosporin has gone from one 50mg tablet twice daily to four 10mg tablets twice a day, an extra forty two tablets a week. At least the injections are only twice a week and if they work only for a month.
* Joan Armatrading - "Love and Affection: Classics 1975-1983" disc 1 track 2
** Joan Armatrading again - disc 2 track 13
Bone Marrow Transplant clinic again this morning; the GvHD is moderately well under control so the Ciclosporin has been reduced a little further, this is the stuff causing numbness in my feet and hands and upsetting my sense of taste so I'm delighted to have the dose reduced.
Haemoglobin and platelet levels have both risen a little - this could be an effect of the Epo injections, I had the third one this morning, equally it could be chance, it will take two or three weeks to know. The weekly visits and blood tests seem set to continue for a little while longer.
Prof checked the vitamin D level and it is low presumably because I've hardly seen any sun in the past year, so it looks like more tablets may be on the way :-( the weekly total has soared recently and is back over two hundred. This is partly because of reducing the dose of various tablets. For example the Ciclosporin has gone from one 50mg tablet twice daily to four 10mg tablets twice a day, an extra forty two tablets a week. At least the injections are only twice a week and if they work only for a month.
* Joan Armatrading - "Love and Affection: Classics 1975-1983" disc 1 track 2
** Joan Armatrading again - disc 2 track 13
Tuesday 1 March 2016
D+222 - "The Needle and the Damage Done* "
Haematology Clinic last week saw some slightly confusing results. The platelet level which had been falling in January has doubled during the course of February but my haemoglobin which had briefly been normal two or three months ago has gradually fallen and is now 10.7 - it should be at least 13.0gm/dl.
The upshot of this is that I'm now on erythropoetin injections twice a week for a month to try and stimulate the bone marrow graft to do its job. "Epo" is what some cyclists and other athletes used to use to boost their performance. I've cancelled my entry to the Tour de France and I'm out of the British Olympic team - actually I was never in it!
I've had two injections so far so it is too soon to notice any difference. Anyway I seem to tolerate anaemia pretty well so it may be sometime before I feel the benefit, assuming it works.
Karine and I have been taking advantage of the crisp cold winter weather and been keeping up the walking. Last Monday we walked with Andy and Linda by the Trent in Burton Joyce just outside Nottingham, lots of bird life and sunshine. A couple of days later we saw a cormorant at Bestwood Mill Lakes, we both thought cormorants lived by the sea, Nottingham is about as far inland as you can get. We also saw grey herons nesting on the island at Wollaton hall. It sounds like we are becoming regular twitchers but don't be fooled, most small birds still look like 'little brown jobs' to me.
* Neil Young - "Harvest" track 9
The upshot of this is that I'm now on erythropoetin injections twice a week for a month to try and stimulate the bone marrow graft to do its job. "Epo" is what some cyclists and other athletes used to use to boost their performance. I've cancelled my entry to the Tour de France and I'm out of the British Olympic team - actually I was never in it!
I've had two injections so far so it is too soon to notice any difference. Anyway I seem to tolerate anaemia pretty well so it may be sometime before I feel the benefit, assuming it works.
Karine and I have been taking advantage of the crisp cold winter weather and been keeping up the walking. Last Monday we walked with Andy and Linda by the Trent in Burton Joyce just outside Nottingham, lots of bird life and sunshine. A couple of days later we saw a cormorant at Bestwood Mill Lakes, we both thought cormorants lived by the sea, Nottingham is about as far inland as you can get. We also saw grey herons nesting on the island at Wollaton hall. It sounds like we are becoming regular twitchers but don't be fooled, most small birds still look like 'little brown jobs' to me.
* Neil Young - "Harvest" track 9
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