As I have written previously, I am struggling even to go upstairs, and I guessed it was because my red cell count was low. Today, the district nurse came to change the dressing of my PICC line, and to take some blood. The nurse said she would not have time to get the blood analyzed today, so Rose and I dropped the blood samples at my local hospital at about 12.
I just spoke to UCH and they had the results; my haemoglobin is only 7.6! I feel it when it is below 8.5, so this is confirmation of the cause for my tiredness. So, tomorrow (Saturday) we will go to Ambicare, and I will get a transfusion of a couple of units of blood. It will be rather a slow day (it takes a few hours to get the blood, and then 2 hours for each bag to go in), but this will hopefully solve the issue.
I am managing to maintain my weight (in fact I put on 0.2kg), which is essential. The more I weigh before the transplant the stronger I will be after it.
This morning Chris rang for a chat, which was most welcome. I spent the rest of the day watching the golf (BMW PGA at Wentworth).
Friday, 27 May 2011
Thursday, 26 May 2011
A slow day
Today has been a slow day. I could have gone shopping with Rose but I felt too weak for it, so I stayed at home. I finished my book (I am reading/rereading the Foundation books by Asimov; 6 down, 1 to go). Aside from that I am feeling OK, struggling to gain weight as ever.
Yesterday, my brother Harry had his medical for the transplant. It was quite thorough by the sound of it. He had a chest xray, ECG and they took 16 samples of blood! The full results will be available in a few days, and my fingers are crossed. I will take this opportunity to thank Harry again for being a donor - he is a real life saver!
My next contact with the transplant team is on 2nd June (a week from now) when I meet the consultant in charge.
Yesterday, my brother Harry had his medical for the transplant. It was quite thorough by the sound of it. He had a chest xray, ECG and they took 16 samples of blood! The full results will be available in a few days, and my fingers are crossed. I will take this opportunity to thank Harry again for being a donor - he is a real life saver!
My next contact with the transplant team is on 2nd June (a week from now) when I meet the consultant in charge.
Wednesday, 25 May 2011
Quizes and puzzles
I am quite weak, I think my haemoglobin is low, because I get dizzy when I stand up, and get tired very rapidly. However, my tooth socket continues to heal nicely, so I am very glad that I had the tooth extracted. Hindsight is a wonderful thing. Also, the haemorrhoid is calming down, so it is really just the anaemia that is preventing me from completely enjoying myself. I am finding it hard to maintain my weight again; must try harder!
When Ray came to visit he brought me a whole load of quiz and puzzle books, and it is fun to try them together with Rose, especially the "riddle" type. Some of the mathematical puzzles are really difficult - you need to remember school maths!
We are having home-made pizza for dinner, one of Rose's specialities!
When Ray came to visit he brought me a whole load of quiz and puzzle books, and it is fun to try them together with Rose, especially the "riddle" type. Some of the mathematical puzzles are really difficult - you need to remember school maths!
We are having home-made pizza for dinner, one of Rose's specialities!
Tuesday, 24 May 2011
A trip to the supermarket
I slept well, in our bed. You cannot beat home luxury (especially as the mattress is quite new and we did not skimp!).
Rose got up first and went to play golf; I finally dragged myself out of bed at 9 o'clock. I cannot have breakfast cereal with my newly extracted tooth (I have to avoid crunchy foods), so I went to the supermarket (driving my car there) to get some yoghurts. There are surprisingly few full fat ones - the shelves are bursting with low fat stuff, but I did find some. It's only for a few days ...
I passed the time reading and playing bridge on the iPad, and had a nice lunch of warmed up leftovers. After lunch I had a nap. Rose came home at about 2:30pm, and she had a good round - gross 85, with 39 on the front 9! She won her division for the first time this year I think. Well played Rose!
Health wise, my tooth socket is healing nicely, and I have not had any pain from it. The nausea is under control ... just. I hope it continues that way.
Rose got up first and went to play golf; I finally dragged myself out of bed at 9 o'clock. I cannot have breakfast cereal with my newly extracted tooth (I have to avoid crunchy foods), so I went to the supermarket (driving my car there) to get some yoghurts. There are surprisingly few full fat ones - the shelves are bursting with low fat stuff, but I did find some. It's only for a few days ...
I passed the time reading and playing bridge on the iPad, and had a nice lunch of warmed up leftovers. After lunch I had a nap. Rose came home at about 2:30pm, and she had a good round - gross 85, with 39 on the front 9! She won her division for the first time this year I think. Well played Rose!
Health wise, my tooth socket is healing nicely, and I have not had any pain from it. The nausea is under control ... just. I hope it continues that way.
Monday, 23 May 2011
Tooth extaction
I did not sleep well, despite being disconnected from the backpack.
I checked out of the hotel and went over to Ambicare at 9am, and got some good news - they could do my CT scan sometime before 10, but I would have to wait over at "Imaging". I went over at 09:15, and after a very short wait was taken for my chest CT. I was back in Ambicare at 09:45 and then went for my dental appointment.
Now, I had a "problem" with my upper left 7th. The dentist who extracted my wisdom tooth recommended extraction, and so did the UCH dentist back in January. Both times I declined, as I was in no pain from the tooth. This time, the UCH dentist was insistent that it must be dealt with before my stem cell transplant, as there was a strong likelihood it would become infected whilst my counts were flat. So ...
... at middday I went back to have the tooth extracted. I was feeling particulalry nauseous today, and worried I would gag when the dentist poked around, so she perscribed diazepam as a mild sedative. They were running late, but finally at about 2pm I got the diazepam - great drug! After waiting a while we finaly got to the procedure. The extraction went OK, the tooth came out quite easily and cleanly, but now I have to live with the after-effects for a week or more! This is not something I really need right now, but on the other hand it means things will be better for the transplant. The dentist only does clinic on a Monday, so I have another appointment to attend on the 6th June (that makes three, 2nd, 6th and 7th).
So now I am back home. Many thanks to Rose for coming to pick me up, and for her forebearance whilst I waited and underwent the dental procedre.
I have more drugs than I ever have had, and I thought I would share the list with you to give you an idea:
It is not easy to remember to take them all - even with a checklist! As most of them are prophylactic it is not so crucial if I miss one.
I checked out of the hotel and went over to Ambicare at 9am, and got some good news - they could do my CT scan sometime before 10, but I would have to wait over at "Imaging". I went over at 09:15, and after a very short wait was taken for my chest CT. I was back in Ambicare at 09:45 and then went for my dental appointment.
Now, I had a "problem" with my upper left 7th. The dentist who extracted my wisdom tooth recommended extraction, and so did the UCH dentist back in January. Both times I declined, as I was in no pain from the tooth. This time, the UCH dentist was insistent that it must be dealt with before my stem cell transplant, as there was a strong likelihood it would become infected whilst my counts were flat. So ...
... at middday I went back to have the tooth extracted. I was feeling particulalry nauseous today, and worried I would gag when the dentist poked around, so she perscribed diazepam as a mild sedative. They were running late, but finally at about 2pm I got the diazepam - great drug! After waiting a while we finaly got to the procedure. The extraction went OK, the tooth came out quite easily and cleanly, but now I have to live with the after-effects for a week or more! This is not something I really need right now, but on the other hand it means things will be better for the transplant. The dentist only does clinic on a Monday, so I have another appointment to attend on the 6th June (that makes three, 2nd, 6th and 7th).
So now I am back home. Many thanks to Rose for coming to pick me up, and for her forebearance whilst I waited and underwent the dental procedre.
I have more drugs than I ever have had, and I thought I would share the list with you to give you an idea:
- Lanzoprazole: protects the stomach linng, once each day in the morning
- Imatinib: A treatment drug that rectifies the chromosome balance, once each day
- Ondansetron: anti-nausea, three times a day
- Domperidone: anti-nausea, four times a day
- Cyclizine: anti-nausea, three times a day
- Itraconazole: prevents fungal infection of the lung, liquid form twice a day on an empty stomach
- Acyclovir: anti-viral, three times a day
- Septrin: anti-biotic, twice a day at weekends only
- Deltaparin: prevents blood clots, one syringe injected each day in the belly
It is not easy to remember to take them all - even with a checklist! As most of them are prophylactic it is not so crucial if I miss one.
Sunday, 22 May 2011
The backpack is gone
I have just been over to the hospital and been disconnected from the backpack. I had a slight scare this morning, because the creatinine level in my kidneys was too high. They thought I would have to spend another night with hydration (ie connected to the backpack) to clear it, even if the methotrexate had cleared. Fortunately, I got good results in both areas, so I can spend an unencumbered night.
Tomorrow, I will checkout and then go across for a dental checkup. It is the first of the "pre-transplant" tests. After that, I will be off home. There is an outside chance that I might get a chest CT scan as well, otherwise I will have to come back for it. It is to confirm that I do not have a fungal infection on the lungs.
The transplant is on June 23rd, and the pre-chemo starts on the 15th. This means that aside from a few trips to London for tests I will get three weeks at home.
- Posted using BlogPress from my iPad
Tomorrow, I will checkout and then go across for a dental checkup. It is the first of the "pre-transplant" tests. After that, I will be off home. There is an outside chance that I might get a chest CT scan as well, otherwise I will have to come back for it. It is to confirm that I do not have a fungal infection on the lungs.
The transplant is on June 23rd, and the pre-chemo starts on the 15th. This means that aside from a few trips to London for tests I will get three weeks at home.
- Posted using BlogPress from my iPad
Saturday, 21 May 2011
Lunch with Christine and Simon
Last night passed OK. I have to set an alarm for 2am to take some drugs, but with the weeing it does not make that much difference!
Today, Rose stayed with me in Ambicare in the morning in order to meet with with Christine and Simon, our globetrotting friends. They are soon off to Indonesia, but I can't say I would envy them even if healthy! Rose had a coffee with them in Pret's, and then left to go home, and the three of us had lunch in Ask:Italian. It was best described by Simon as "adequate".
This afternoon I had a nice nap, watched a little bit of the golf, and then the Heineken Cup (rugby) final. Saints started really well, and took a commanding first half lead, but they ran themselves out and looked like schoolboys in the second half. Leinster trounced them!
Health wise, I have developed some gut problems, caused by the methotrexate, and have developed a small haemorrhoid, also caused by the drugs. Both these make for uncomfortable sessions in the bathroom. The nausea seems to have abated somewhat, but I won't really be able to tell for sure until this hydration phase finishes and I am back home, which will hopefully be on Monday.
- Posted using BlogPress from my iPad
Today, Rose stayed with me in Ambicare in the morning in order to meet with with Christine and Simon, our globetrotting friends. They are soon off to Indonesia, but I can't say I would envy them even if healthy! Rose had a coffee with them in Pret's, and then left to go home, and the three of us had lunch in Ask:Italian. It was best described by Simon as "adequate".
This afternoon I had a nice nap, watched a little bit of the golf, and then the Heineken Cup (rugby) final. Saints started really well, and took a commanding first half lead, but they ran themselves out and looked like schoolboys in the second half. Leinster trounced them!
Health wise, I have developed some gut problems, caused by the methotrexate, and have developed a small haemorrhoid, also caused by the drugs. Both these make for uncomfortable sessions in the bathroom. The nausea seems to have abated somewhat, but I won't really be able to tell for sure until this hydration phase finishes and I am back home, which will hopefully be on Monday.
- Posted using BlogPress from my iPad
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