One of the problems with leukaemia is being neutropenic, this means not having the white cells that fight infection. The disease causes this as does the chemotherapy used to treat it.
In the aftermath of each cycle of treatment there is a period of two to three weeks waiting for the white cells to reappear. During this time I am very vulnerable to infections. This is even more true after transplant. The consultants say that everyone gets infections during this time. I've done my best to confound them but have failed completely.
The latest episode was earlier this week. In my experience they come on very quickly, sometimes over the course of a few minutes, sometimes over an hour or so. The absence of a proper immune system means the body doesn't react very much to infections so they can sneak up on you without you realising. However the one thing that can be counted on is a rise in temperature and this is what I experience. A rise to 38C is a called a "spike" and triggers a rapid series of reactions and responses.
For me that usually means rigors which are truly horrible to experience, violent shivering and shaking of my whole body and teeth chattering uncontrollably. Feeling hot and cold and headaches are an unwelcome accompaniment. Racing pulse and sometimes a drop in blood pressure occur as well. It feels like suddenly being dragged into a maelstrom.
Luckily the ward staff know exactly what to do and are absolutely brilliant. Lots of samples are taken to look for infection, the doctor is called, two different antibiotics are started immediately, paracetamol is given sometimes orally, sometimes IV. Cruelly they strip the covers off the bed and switch on a fan. All this happens very quickly, usually within an hour or so. After that it's watch and wait a little with frequent monitoring of BP, pulse and temperature etc. Mostly things start to improve within the next hour especially the rigors. This time it took most of the night and several visits from the doctor. This left me very tired and feeling very rough. My BP refused to come back up till the following evening despises gallons of IV fluids but eventually it all settled down and I'm now back to "normal".
(It turned out later that this was septicaemia, an infection living and multiplying in the blood stream. Luckily I was put on the correct antibiotics immediately.)
In about seven to fourteen days I should start to see the return of white blood cells and then the risk of "spikes" drops away very rapidly thank goodness. When I'm in the middle of a spike it seems like hell, it is hell, but when it's over it seems a small price to pay for having a good chance of surviving leukaemia.
* Elvis Costello - "Spike" 1989 album
Thursday, 30 July 2015
Saturday, 25 July 2015
D+1 - "Dig It* " - In praise of the Nottingham Haematology Dept part 2
The work can be unpredictable. The number of transplant patients seems pretty high. Almost all will 'spike' a temperature several times both during chemotherapy & after transplant. Very often this occurs over the course of a few minutes. I should explain that without any proper immunity we don't display any of the signs of gradually becoming unwell. All of a sudden the body throws up a high temperature by which time the infection is often well established. The big dangers are septicaemia & pneumonia which can come on very suddenly. The nurses react incredibly quickly when this happens. Blood cultures & swabs are taken straight away. Two lots of IV antibiotics are started together with hydrocortisone & Piriton IV. All this in under an hour. Sometimes several patients will spike a temperature within an hour of each other so you can see why the wards have a reputation for being busy.
This is not to mention all the other complications, mostly minor but one or two serious ones as well. I think they should keep for another time!
Finally the Drs have been excellent. The consultants & junior Drs all have time to listen & to talk to me, to calm my fears, answer my questions even when I've already asked them before. I knew it was a good department from when I was working but hadn't realised how truly excellent it is, very much at the cutting edge.. One of the top two depts in the country by all accounts with an international reputation in stem cell transplants & and perhaps other transplants too but this is outside my experience.
(Everything I talk about relates to AML only.) The department in conjunction with other leading centres leads a lot of the national & international trials & research in haematology. Cancer treatment is all about clinical trials. Yes there are new drugs which one reads about in the press but they all need proper independent transparent trials to establish their role in the haematologist's armamentarium.
Hopefully this gives you an idea of how lucky I am to be in this unit. Not to mention that we only live five minutes away. From what I can tell there are patients here from the east coast of of Lincolnshire & Northamptonshire.
Enough for now! Please feel free to respond to this, I would welcome the feedback. Let me know if it's too long & boring!
With love
David
* Beatles "Let It Be" track 5
This is not to mention all the other complications, mostly minor but one or two serious ones as well. I think they should keep for another time!
Finally the Drs have been excellent. The consultants & junior Drs all have time to listen & to talk to me, to calm my fears, answer my questions even when I've already asked them before. I knew it was a good department from when I was working but hadn't realised how truly excellent it is, very much at the cutting edge.. One of the top two depts in the country by all accounts with an international reputation in stem cell transplants & and perhaps other transplants too but this is outside my experience.
(Everything I talk about relates to AML only.) The department in conjunction with other leading centres leads a lot of the national & international trials & research in haematology. Cancer treatment is all about clinical trials. Yes there are new drugs which one reads about in the press but they all need proper independent transparent trials to establish their role in the haematologist's armamentarium.
Hopefully this gives you an idea of how lucky I am to be in this unit. Not to mention that we only live five minutes away. From what I can tell there are patients here from the east coast of of Lincolnshire & Northamptonshire.
Enough for now! Please feel free to respond to this, I would welcome the feedback. Let me know if it's too long & boring!
With love
David
* Beatles "Let It Be" track 5
Friday, 24 July 2015
D+1 - "Dig It* "- In praise of the Nottingham Haematology Centre part 1
What follows is a personal view and may contain some inaccuracies, nevertheless the general drift and tone is as true a record as I can manage from the perspective of a hospital bed.
I thought I might talk a little about the haematology unit in Nottingham. I think the building is about 7-8 years old, purpose built with a day case unit on the ground floor for people needing chemotherapy on an outpatient basis. Outpatients are downstairs as well. There is a lab as well so blood results are ready within a few minutes which means the Drs have your results immediately - fantastic!
Upstairs are two wards. On the first floor the ward is mainly used for chemotherapy. Some of the rooms are twin bedded, most are single rooms with en suite shower rooms.
On the floor above is the transplant ward which is where I am now. All the rooms are en suite. I'm in a 'lovely' room with a view across part of the hospital grounds and beyond, plenty of trees in view. One wall of my room has a large mural of a forest scene with dappled sunlight on the forest floor. The room is a good size so doesn't feel cramped at all. The main snag is that I'm confined to this room until my white blood cells & platelets start to return in a few weeks time.
Much more important than all this are the staff who care for us patients. On all three floors I have found them to be wonderful. There is a strong 'esprit de corp' everywhere which I'm sure reflects good ward management.
A lot of their work is quite technical. Preparing and delivering chemotherapy medication is complex. These are potentially lethal drugs so getting the right drug to the right patient at the right time and in the right dose is critical. In addition to these treatments there are even more drugs to minimise the risk of side effects, antibacterials, antifungals, antivirals, antiemetics anti inflammatories (steroids), antipyretics, analgesics, antihistamines, vitamin K IV & vitamins B & C also IV etc.
Nevertheless the staff ALL seems to have time to stop and listen when I have questions and when I need to off load. This includes not only the nurses and student nurses but the nurses in charge of the ward, (are they called matrons again these days?). It also includes the kitchen staff, the cleaners, porters and the staff in the respiratory assessment unit, X Ray and cardiology. It's not unusual to see people step out of their role and help someone else, senior nurses clearing away breakfast or serving lunch, bedmaking etc.
All the staff here are a deep rich precious golden treasure for whom nothing is too much trouble. They all seem to have time for their patients. This is despite the fact that I have heard several times from elsewhere that the haematology wards have a reputation for being extremely busy.
* Beatles "Let It Be" track 5
(Continued on next page)
I thought I might talk a little about the haematology unit in Nottingham. I think the building is about 7-8 years old, purpose built with a day case unit on the ground floor for people needing chemotherapy on an outpatient basis. Outpatients are downstairs as well. There is a lab as well so blood results are ready within a few minutes which means the Drs have your results immediately - fantastic!
Upstairs are two wards. On the first floor the ward is mainly used for chemotherapy. Some of the rooms are twin bedded, most are single rooms with en suite shower rooms.
On the floor above is the transplant ward which is where I am now. All the rooms are en suite. I'm in a 'lovely' room with a view across part of the hospital grounds and beyond, plenty of trees in view. One wall of my room has a large mural of a forest scene with dappled sunlight on the forest floor. The room is a good size so doesn't feel cramped at all. The main snag is that I'm confined to this room until my white blood cells & platelets start to return in a few weeks time.
Much more important than all this are the staff who care for us patients. On all three floors I have found them to be wonderful. There is a strong 'esprit de corp' everywhere which I'm sure reflects good ward management.
A lot of their work is quite technical. Preparing and delivering chemotherapy medication is complex. These are potentially lethal drugs so getting the right drug to the right patient at the right time and in the right dose is critical. In addition to these treatments there are even more drugs to minimise the risk of side effects, antibacterials, antifungals, antivirals, antiemetics anti inflammatories (steroids), antipyretics, analgesics, antihistamines, vitamin K IV & vitamins B & C also IV etc.
Nevertheless the staff ALL seems to have time to stop and listen when I have questions and when I need to off load. This includes not only the nurses and student nurses but the nurses in charge of the ward, (are they called matrons again these days?). It also includes the kitchen staff, the cleaners, porters and the staff in the respiratory assessment unit, X Ray and cardiology. It's not unusual to see people step out of their role and help someone else, senior nurses clearing away breakfast or serving lunch, bedmaking etc.
All the staff here are a deep rich precious golden treasure for whom nothing is too much trouble. They all seem to have time for their patients. This is despite the fact that I have heard several times from elsewhere that the haematology wards have a reputation for being extremely busy.
* Beatles "Let It Be" track 5
(Continued on next page)
Thursday, 23 July 2015
D+0 - Notes from 'D' day (with apologies to the real 'D' day heroes)
Well, this is 'D' day, the day of my stem cell transplant. By coincidence it is three months to the day since I was diagnosed, it seems a long while ago now.
I've spent two of this three months in hospital mostly in a single room. The short breaks at home have been incredibly therapeutic both psychologically and physically. Fortunately, in hospital we have wifi thanks to a local charity, an absolute godsend, that and the mobile phone of course. Keeping in touch is keeping me sane.
When I'm well enough I read which is quite often, radio 4 is a boon in short bursts and I have discovered how to load some music onto my phone. Just re-read To Kill a Mockingbird which I last read as a teenager, I'd forgotten how short the chapters on the morphine withdrawal and on the trial were. Nevertheless, a very enjoyable read. We have a copy of Watchman which I'll read shortly. Also I've just read Barbara Kingsolver's Flight Bevaviour which was excellent, I enjoyed it more than Lacuna and even the Poison Wood Bible.
Enough of books. Today is a busy day, all in all about 22hrs worth of IV infusions though some can run simultaneously. Yesterday's infusions didn't finished till 10am this morning, then a 15min break for a shower etc before starting all over again! In addition I need a couple of units of blood, the anaemia is getting a little too low for comfort.
I feeling positive about all this despite the spikes in temperature from time to time and the lack of sleep. The transplant fills me with hope and also with trepidation. Everyone seem to get complications of some sort, the question is how how severe they are. I think they all make you pretty grotty but most are not life threatening. It'll take about 2-6 weeks for the graft to 'take', maybe longer if I get too many infections.
I've been incredibly fortunate so far, no major upsets and I hopped through two of the three major hurdles, namely getting into remission the first time (the consultants gave me a 55% of achieving this otherwise they were threatening me with 'hand grenade' therapy - their phrase - I didn't like to ask what this entailed). The second hurdle was finding a stem cell donor. The best donors are siblings and fortunately my sister is a full 10/10 match. Each sibling has a 1 in 4 chance of being a match. Of course this doesn't mean that having four siblings guarantees a match. I couldn't get my head round the stats (I blame the anaemia but it's more likely old age and stupidity!) so I asked Martin Rowlatt, the practice manager at my old practice and he came up with the answer very quickly. With three siblings, the answer is 55% (that number again!). If anyone wants the formula I'll post it on here!
I think this is more than enough for today. I won't post every day unless there is some news and I'm feeling up to it. I get the impression that the next few days are going to be pretty rough so apologies if there are some prolonged silences.
Now for the third hurdle! I've got the transplant sometime in the next hour or so and after that I can't leave this room till my bone marrow starts to recover, hopefully some time in August
Love and best wishes to you all and a heartfelt thanks for all your support for Karine and me, it means a lot to us to know that so many people are thinking of us, praying for us and rooting for us.
David
I've spent two of this three months in hospital mostly in a single room. The short breaks at home have been incredibly therapeutic both psychologically and physically. Fortunately, in hospital we have wifi thanks to a local charity, an absolute godsend, that and the mobile phone of course. Keeping in touch is keeping me sane.
When I'm well enough I read which is quite often, radio 4 is a boon in short bursts and I have discovered how to load some music onto my phone. Just re-read To Kill a Mockingbird which I last read as a teenager, I'd forgotten how short the chapters on the morphine withdrawal and on the trial were. Nevertheless, a very enjoyable read. We have a copy of Watchman which I'll read shortly. Also I've just read Barbara Kingsolver's Flight Bevaviour which was excellent, I enjoyed it more than Lacuna and even the Poison Wood Bible.
Enough of books. Today is a busy day, all in all about 22hrs worth of IV infusions though some can run simultaneously. Yesterday's infusions didn't finished till 10am this morning, then a 15min break for a shower etc before starting all over again! In addition I need a couple of units of blood, the anaemia is getting a little too low for comfort.
I feeling positive about all this despite the spikes in temperature from time to time and the lack of sleep. The transplant fills me with hope and also with trepidation. Everyone seem to get complications of some sort, the question is how how severe they are. I think they all make you pretty grotty but most are not life threatening. It'll take about 2-6 weeks for the graft to 'take', maybe longer if I get too many infections.
I've been incredibly fortunate so far, no major upsets and I hopped through two of the three major hurdles, namely getting into remission the first time (the consultants gave me a 55% of achieving this otherwise they were threatening me with 'hand grenade' therapy - their phrase - I didn't like to ask what this entailed). The second hurdle was finding a stem cell donor. The best donors are siblings and fortunately my sister is a full 10/10 match. Each sibling has a 1 in 4 chance of being a match. Of course this doesn't mean that having four siblings guarantees a match. I couldn't get my head round the stats (I blame the anaemia but it's more likely old age and stupidity!) so I asked Martin Rowlatt, the practice manager at my old practice and he came up with the answer very quickly. With three siblings, the answer is 55% (that number again!). If anyone wants the formula I'll post it on here!
I think this is more than enough for today. I won't post every day unless there is some news and I'm feeling up to it. I get the impression that the next few days are going to be pretty rough so apologies if there are some prolonged silences.
Now for the third hurdle! I've got the transplant sometime in the next hour or so and after that I can't leave this room till my bone marrow starts to recover, hopefully some time in August
Love and best wishes to you all and a heartfelt thanks for all your support for Karine and me, it means a lot to us to know that so many people are thinking of us, praying for us and rooting for us.
David
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