Feeling well, shoulder above where central line went is is less sore. Plenty of pills to take - shake rattle and (roll), anti sickness, conditioning etc. I think we are looking at about 10 a day - will try to keep a record tomorrow. Busy day with visits from nurses, doctors etc.
Had two units of blood today plus first chemo drip. I have to keep a record of my liquid intake and output for the full length of my stay - yes nice hospital bottles in use. Introduced to a nice little friend that will be with me for my stay - injection in the skin in the stomach, which is ok but stings like fury a few moments after it has finished.
Other good news is that Exjade will be started once the engraftment has taken and I am beyond 30 days from admission. So that looks like April.
Because of the Norovirus visiting is restricted to the hours of 15:00 - 17:00 and 19:00 - 20:00. Shame as visiting was all day with no visiting between 12pm and 2pm.
Wednesday, February 29, 2012
28th February - In the air
Well it was a bumpy take off. Arrived in time for bloods at 08:30 and then trotted around to have my line fitted. No can do as my platelets are too low. Also found out that as yet there was no bed available!!. So of to Haematology for platelets - at the other end of the hospital of course. Got that done had a bite to eat and was back at Vascular Access for my line insertion around midday. Got on the table in theatre to discover that radiographer was of to lunch. So around about 14:00 I got my line it. The relaxation drug is great - do not remember a thing, though Mary and Tizzy assure me I was as high as a kite when I cam back to the recovery room.
We are then informed that a bed would be available late afternoon or early evening. Eventually on the ward at 19:00. Shoulder is very sore above where the line went in, but I am assured that this is normal.
I can see sleeping is going to be fun. Observations at 22:00; 02:00 and 06:00. Although I am in a single room, the ward outside is noisey and my room is never dark.
The window in my room provides a nice view of a part of the hospital, tower blocks beyond and then Cambridge.
Have a transfusion this morning as my Hb is down to 7.4 and then that will be followed by the start of Chemo. On that subject I had some tablets last night and some liquid which really tasted gross and took many a glass of water to remove the taste.
Well I guess I am now really airborne and time will tell how bumpy the ride is going to be!!
We are then informed that a bed would be available late afternoon or early evening. Eventually on the ward at 19:00. Shoulder is very sore above where the line went in, but I am assured that this is normal.
I can see sleeping is going to be fun. Observations at 22:00; 02:00 and 06:00. Although I am in a single room, the ward outside is noisey and my room is never dark.
The window in my room provides a nice view of a part of the hospital, tower blocks beyond and then Cambridge.
Have a transfusion this morning as my Hb is down to 7.4 and then that will be followed by the start of Chemo. On that subject I had some tablets last night and some liquid which really tasted gross and took many a glass of water to remove the taste.
Well I guess I am now really airborne and time will tell how bumpy the ride is going to be!!
Monday, February 27, 2012
27th February - Pre Takeoff
In preparation for tomorrow, a visit to the hairdresser felt the order of the day. No 2 all over - should make the hair falling out easier to cope with!!!
Bags all packed.
The wonderful Department for Work and Pensions sent me a Limited Capability for Work Questionnaire. What timing!! Anyway duly completed and returned. Anyone want to bet they call me for me for an interview whilst I am in Addenbrooke's or within four weeks of being discharged??
Bags all packed.
The wonderful Department for Work and Pensions sent me a Limited Capability for Work Questionnaire. What timing!! Anyway duly completed and returned. Anyone want to bet they call me for me for an interview whilst I am in Addenbrooke's or within four weeks of being discharged??
Sunday, February 26, 2012
Week ending 25th February
Well I guess we are now at the end of the runway!!!
Wednesday brought good news - Bedfordshire PCT have at long last agreed to fund the use of Exjade to remove my iron overload. It would have been good if they had agreed this back in October as we could possibly have got rid of the excess iron prior to the transplant, but better late than never. Was it Addenbrooke's persistence or my MP joining the fray - I guess we will never know!
Thursday brought another raft of tests - lung function, x-ray and ECG - all ok.
Every bit of me has now been checked.
So in to Addenbrooke's and away we go on Monday!!!
I'll try and blog on a regular basis from here on in, but it is going to depend on how it all goes.
Wednesday brought good news - Bedfordshire PCT have at long last agreed to fund the use of Exjade to remove my iron overload. It would have been good if they had agreed this back in October as we could possibly have got rid of the excess iron prior to the transplant, but better late than never. Was it Addenbrooke's persistence or my MP joining the fray - I guess we will never know!
Thursday brought another raft of tests - lung function, x-ray and ECG - all ok.
Every bit of me has now been checked.
So in to Addenbrooke's and away we go on Monday!!!
I'll try and blog on a regular basis from here on in, but it is going to depend on how it all goes.
Saturday, February 18, 2012
Week ending 18th February
Well we are now well and truly on the runway!!
Wednesday was a visit to the Haematology department at Addenbrooke's for a bone marrow biopsy (my third!!) and more bloods taken. Had a phone call from the BMT specialist nurse to tell me that I had passed all last week's tests with flying colours!!
Haematology tell me I have good hard bones - great for later life, but not so good for bone marrow biopsy!!
Thursday was a really eventful day. I met with Dr Charles Crawley and I now have a firm admission date of Tuesday 28th February into Addenbrooke's. Central line goes in that morning and away we go!! Dashed back from Addenbrooke's to Bedford for more blood tests and cross match ready for my transfusion on Friday. Now discharged from Bedford Haematology to Addenbrooke's.
Friday - Two units of blood and that should be my last visit to Primrose Ward in Bedford for quite a while. The Primrose ward is really wonderful. The staff are just great. Discharged from there to Addenbrooke's. Donor should have had his medical today.
Wednesday was a visit to the Haematology department at Addenbrooke's for a bone marrow biopsy (my third!!) and more bloods taken. Had a phone call from the BMT specialist nurse to tell me that I had passed all last week's tests with flying colours!!
Haematology tell me I have good hard bones - great for later life, but not so good for bone marrow biopsy!!
Thursday was a really eventful day. I met with Dr Charles Crawley and I now have a firm admission date of Tuesday 28th February into Addenbrooke's. Central line goes in that morning and away we go!! Dashed back from Addenbrooke's to Bedford for more blood tests and cross match ready for my transfusion on Friday. Now discharged from Bedford Haematology to Addenbrooke's.
Friday - Two units of blood and that should be my last visit to Primrose Ward in Bedford for quite a while. The Primrose ward is really wonderful. The staff are just great. Discharged from there to Addenbrooke's. Donor should have had his medical today.
Monday, February 13, 2012
Week ending 11th February
Moving further down the apron!!!
Wednesday saw me having a Abdomen and Renal Tract ultrasound at Bedford South Wing and got immediate feedback. We now know that I have the correct number of kidneys, that they are the correct shape, correct size, in the right place and that all urine is expelled correct. So that part of me seems to be working A1.
Thursday was an all day event at Addenbrooke's in the department of Nuclear Medicine. More tests on the kidneys by injecting me with a radio active substance and then taking blood samples every hour for a period of 3 hours to check kidney function. Once this was finished it was injections of some marker into each arm and then 30 minutes later photographs of my heart. This is getting more and more like a major car service!!
Wednesday saw me having a Abdomen and Renal Tract ultrasound at Bedford South Wing and got immediate feedback. We now know that I have the correct number of kidneys, that they are the correct shape, correct size, in the right place and that all urine is expelled correct. So that part of me seems to be working A1.
Thursday was an all day event at Addenbrooke's in the department of Nuclear Medicine. More tests on the kidneys by injecting me with a radio active substance and then taking blood samples every hour for a period of 3 hours to check kidney function. Once this was finished it was injections of some marker into each arm and then 30 minutes later photographs of my heart. This is getting more and more like a major car service!!
Tuesday, February 7, 2012
Week ending 4th February
The last of the quiet weeks for quite some time to come.
Wednesday was a visit to the haematologist to discover I had a Hb of 6.8 which is not brilliant [normal male is 13.8 to 17.2]. Thursday was an early start at 08:30 for a whole day in the Primrose Ward at Bedford South Wing having three units of blood. Since diagnosed I have now had a total of 44 units of blood. Bedford PCT turned down the appeal from Addenbrooke's for the Exjade, though they did agree to the version that could be delivered by pump over an eight hour period. Unfortunately this is not clinically suitable for my condition so yet another appeal.
My neutrolfile level is about 0.26 and for a healthy person it should be around 2.5, so my immune system is shot and I am very susceptible to infection.
Looking at my appointment schedule for this week and the next two it feels like I am on a flight - just left the boarding gate, on the apron heading for the runway. Let's hope the flight gets airborne week commencing 26th February.
Wednesday was a visit to the haematologist to discover I had a Hb of 6.8 which is not brilliant [normal male is 13.8 to 17.2]. Thursday was an early start at 08:30 for a whole day in the Primrose Ward at Bedford South Wing having three units of blood. Since diagnosed I have now had a total of 44 units of blood. Bedford PCT turned down the appeal from Addenbrooke's for the Exjade, though they did agree to the version that could be delivered by pump over an eight hour period. Unfortunately this is not clinically suitable for my condition so yet another appeal.
My neutrolfile level is about 0.26 and for a healthy person it should be around 2.5, so my immune system is shot and I am very susceptible to infection.
Looking at my appointment schedule for this week and the next two it feels like I am on a flight - just left the boarding gate, on the apron heading for the runway. Let's hope the flight gets airborne week commencing 26th February.
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