I am back at the hospital for an extra clinic appointment, and to get my Pentamadine nebulizer that I have once a month. The new building is slowly but surely getting into shape, and I was actually able to register electronically (although this is still something of a lottery, as others were unable to).
The main purpose of this appointment was to verify that my rash has not reappeared after stopping the steroids, and in fact the rash has almost gone (but not quite) so there is no concern there. My blood counts are lower than last time: haemoglobin 12.3 (OK, this is higher), platelets 143, neutrophils 2.52 and lymphocytes 0.81. The doctor says that the drop is caused by the methotrexate from the intrathecal, and my counts will recover in due course. In any case, they are pretty normal (platelets should strictly speaking be over 150).
All signs of GVHD have pretty much gone. Overall, the mature lymphocytes I got from my brother in February have caused very little trouble. This is good (no symptoms), but maybe also bad because it maybe means they did not attack my residual host lymphocytes. I will find out in May!
One change from the old regime is that the BMT clinic has now got dedicated phlebotomists to take blood. It was a pleasant surprise to see the excellent chap who used to take all the blood when I was an inpatient. He has excellent needle skills, and was definitely the go-to guy for a cannula when he nurses were having trouble finding a good vein.
I will have my next appointment in three weeks time, when they will take blood for the chimerism test. My long term survival really does depend on killing off my original lymphocytes, so these tests are the really important milestones in my treatment.
Thursday 12 April 2012
Wednesday 4 April 2012
T+286: Intrathecal
They gave me an appointment time of 09:30 today, but rather unsurprisingly when I arrived there was no record of it in the main reception. I came up to Haematology daycare and luckily the staff recognize me (amazing when you consider how many people are coming and going; they said "we don't remember everyone, but we remember you" - I am obviously once seen never forgotten :):).
After much searching and clicking they eventually found my appointment ... for 14:00! Since it would waste another thhree hours of my day to go home and come back, I decided to stay here and work. The WiFi is good and I brought my laptop with me just in case this might happen. Also, they have let me sit in one of the comfy "treatment" chairs (the new building has all new chairs and they are very nice) because they are not too busy yet. I can see the nurses struggling with the new IT system as I write - it is not impressive. I wont name and shame their supplier on this blog, and I know that all office moves are difficult, but I really think that they could have done a little better.
Having said all that, the treatment room is fabulous compared to the old Victorian hospital we used to be in. It is large, bright and well equippped. Each treatment chair has its own TV! I spent many long hours in Ambicare sitting in a chair recieving treatment, and I think the new facilites here are fantastic.
Now I will try to do some work whilst waitng for the dreaded intrathecal ...
They turfed me out of the chair at 12:00 because a real,patient needed it, and so I got some lunch. I came back to the reception at 2pm, and the doctor arrived, but told me there had been a bit of mistake with the prescription and the drug (methotrexate) was not ready. He ordered it from the pharmacy right away, but it meant another two hour delay. In the meantime I went over to the main pharmacy for a resupply of drugs. Eventually, the methotrexate arrived, and the procedure was done. This time, the doctor was very good, and I experienced almost no discomfort. All my previous intrathecals were done with me lying on my side, curled into a ball to stretch my lower back, but this one was done with me sitting up on the side of the bed, bent over forwards over a chair. it is a slightly less dignified position, but clearly has the same effect of stretching the lower back.
I am still in the hospital, just finishing my forced relaxation period after the intrathecal before heading home. A very long day in the hospital!
As usual, all of the staff here were very helpful and pleasant, especially the nurses, many of whom know me quite well by now. I have said it before many times, but I cannot praise them highly enough.
After much searching and clicking they eventually found my appointment ... for 14:00! Since it would waste another thhree hours of my day to go home and come back, I decided to stay here and work. The WiFi is good and I brought my laptop with me just in case this might happen. Also, they have let me sit in one of the comfy "treatment" chairs (the new building has all new chairs and they are very nice) because they are not too busy yet. I can see the nurses struggling with the new IT system as I write - it is not impressive. I wont name and shame their supplier on this blog, and I know that all office moves are difficult, but I really think that they could have done a little better.
Having said all that, the treatment room is fabulous compared to the old Victorian hospital we used to be in. It is large, bright and well equippped. Each treatment chair has its own TV! I spent many long hours in Ambicare sitting in a chair recieving treatment, and I think the new facilites here are fantastic.
Now I will try to do some work whilst waitng for the dreaded intrathecal ...
They turfed me out of the chair at 12:00 because a real,patient needed it, and so I got some lunch. I came back to the reception at 2pm, and the doctor arrived, but told me there had been a bit of mistake with the prescription and the drug (methotrexate) was not ready. He ordered it from the pharmacy right away, but it meant another two hour delay. In the meantime I went over to the main pharmacy for a resupply of drugs. Eventually, the methotrexate arrived, and the procedure was done. This time, the doctor was very good, and I experienced almost no discomfort. All my previous intrathecals were done with me lying on my side, curled into a ball to stretch my lower back, but this one was done with me sitting up on the side of the bed, bent over forwards over a chair. it is a slightly less dignified position, but clearly has the same effect of stretching the lower back.
I am still in the hospital, just finishing my forced relaxation period after the intrathecal before heading home. A very long day in the hospital!
As usual, all of the staff here were very helpful and pleasant, especially the nurses, many of whom know me quite well by now. I have said it before many times, but I cannot praise them highly enough.
Monday 2 April 2012
T+284:The new cancer centre at UCH
After my visit last Thursday I was asked to come back to the clinic today, and here I am. It is the first day of the brand new McMillan Cancer Centre and things are pretty chaotic, especially since I do not have an appointment! I got here early, and luckily I bumped into my medical team in the reception, and they are sorting things out.
They have WiFi here, so I can blog directly. I am sat in the waiting area on the fourth floor, with a rather gaudy floor covering, very teenies!
Originally I was supposed to come to the clinic on Thursday, and then have my intrathecal the following Tuesday. However, I have just seen the consultant, and she would like to see me in 10 days time, and not this Thursday. So, we have rearranged the intrathecal for this Wednesday, the 4th! I must have a blood test within six days of the intrathecal, and they can do this test today, so it all makes sense as it will save an extra trip back here just to give blood.
I am to stop taking the steroids, as they think the rash is probably not GVHD after all! I did not bother to write this before, but I have had a similar looking rash before, back in the late 80's, and it has reoccurred a couple of times since. The doctor thinks it is just as likely that this is the cause of my current rash. This rash was somewhat tentatively diagnosed as Lichen Planus (if you look at the picture on Wikipedia, I do not have the large blotches, but I have the small spots). It normally disappears after a few weeks, especially when exposed to sunlight, so we shall see.
My blood results from today were good; haemoglobin 11.8, platelets 208, neutrophils 4.65 and lymphocytes 0.8.
I am now waiting to give a second blood sample for the clotting test for the intrathecal ...
They have WiFi here, so I can blog directly. I am sat in the waiting area on the fourth floor, with a rather gaudy floor covering, very teenies!
Originally I was supposed to come to the clinic on Thursday, and then have my intrathecal the following Tuesday. However, I have just seen the consultant, and she would like to see me in 10 days time, and not this Thursday. So, we have rearranged the intrathecal for this Wednesday, the 4th! I must have a blood test within six days of the intrathecal, and they can do this test today, so it all makes sense as it will save an extra trip back here just to give blood.
I am to stop taking the steroids, as they think the rash is probably not GVHD after all! I did not bother to write this before, but I have had a similar looking rash before, back in the late 80's, and it has reoccurred a couple of times since. The doctor thinks it is just as likely that this is the cause of my current rash. This rash was somewhat tentatively diagnosed as Lichen Planus (if you look at the picture on Wikipedia, I do not have the large blotches, but I have the small spots). It normally disappears after a few weeks, especially when exposed to sunlight, so we shall see.
My blood results from today were good; haemoglobin 11.8, platelets 208, neutrophils 4.65 and lymphocytes 0.8.
I am now waiting to give a second blood sample for the clotting test for the intrathecal ...
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