Week of 9th to 15th July 2007
Thanks to Jim - twice- and Terry and Les, I have help with transport for three sessions and Tina takes me on Wednesday and Friday. I feel woozy, weary and progressively heavy legged as the week goes on and sleep at least two hours every afternoon. I struggle eating my breakfasts, but enjoy my lunches, which are soup, followed mostly by Ryvita with ham or pastrami and salad, despite my sore gums and mouth ulcers! I try a hot chocolate with a Jaffa cake on Monday afternoon after my sleep, but by 7pm I am feeling decidedly queezy and am sick. That is actually the very first time I have been sick since I started my treatment, despite several times being close. So no hot chocolate for a while! As a result of that experience, I start taking Metoclopromide before each meal and it seems to work. I don’t really enjoy my dinners this week and keep to fairly small portions, although Tina tries to get more into me! The goats cheese and tomato pie is tasty and works well, but my appetite is not great.
My weight varies between 73 and 76.2 kgs through the week with no logic from day to day. I am using the weighing platform each time, so find it really odd that there should be such differences day to day. For example on Wednesday I am 73 kgs but on Thursday I am 75.4 - an increase of 2.4 kgs. My blood results on Monday and Thursday are:
Wbc: 4.2 and 7.6; Neut: 3.5 and 7.2; Lymph: 0.5 and 0.6; Hbn: 10.7 and 10.3; and
PLT: 133 and 168. By Friday I am feeling generally pretty lousy and sorry for myself, with my legs also starting to fill out with fluid. I then get a call from Tim Corbett with news that Kings have identified another CMV reactivation. Fortunately, the reading is 6955, not up in the skies like last time. The decided treatment is 900 mgs twice daily of the anti-viral tablet Valganciclovir for the next 21 days and drop the Aciclovir I am taking No admission into hospital is needed unless the CMV readings rise.
The Methylprednisolone effect is soon upon me as far as sleep pattern is concerned. I am awake at 3am Saturday morning and thirsty, bearing in mind I am only happy drinking very cold water at the moment. I am awake again at 4am and read until 7am (so I am getting back into “Small Island” by Andrea Levy). I then sleep on to 9.30am while Tina went into work. I just about manage a late breakfast and then spend the rest of the morning in the lounge with my legs up, catching up on some old TV recordings, resting and feeling tired and lousy. I recover enough by 2pm to have my usual lunch and then have a good two hours sleep until Tina comes home from work. I don’t feel like dinner until quite late. We are sitting down at 9.30pm. It ok for me but far too late for Tina, bearing in mind she has been at work all day. I cannot help it though. It is the Methylpred. and my body clock!
That night I am awake and reading again between 3am and 5am, but then sleep on until 9.45am. We have a morning visit from Lynn Ross and by 1.30pm I am upstairs asleep. Then it is a 3pm lunch, more resting and sleep for me in the afternoon and 8.30pm dinner.
As expected the Spanish pork casserole works a treat! However, I find no great taste in the little French beer or the fresh cherries, although Tina says they are really nice.
I start the course of prednisolone tablets on Saturday with 70 mgs (14 tablets). Each day the dosage reduces by 10 mgs until I reach two days of 10 mgs and 5 mgs respectively, making a total of nine days.
Monday, 10 September 2007
“Make the Best of the Weekend - the Methylpred is Next Week”
Friday 6th to Sunday 8th July 2007
I go down for my blood test on Friday to find that I have lost over 2 kgs despite all the food consumed in the week - I am 73.2 kgs. My results are: Wbc: 8.2; Neut: 7.5; Lymph: 0.5;
Hbn: 10.8; and PLT: 129. I see Tm Corbett about my mouth ulcers and a rather painful swelling on the back of my hand where I had had a cannula some weeks earlier. He prescribes me a short course of anti-biotics to prevent any possible infection, some anaesthetic mouthwash (Difflam) and increasing the Aciclovir from 3 tablets to five times daily. The lump on the hand is probably a small thrombosis and he says it will go away naturally in time. I have two hours sleep in the afternoon, during which Vikki Bevan leaves a message on the answer phone that my Methylprednisolone next week will have to be the usual dosage - to comply with the clinical trial protocol - but that I will have a nine day course of prednisolone tablets starting on the Saturday following to help wean me off the high dosage steroids and hopefully reduce the possibility of the muscle wastages withdrawal symptoms I experienced last time. Hope it works!
The “birthday” balloon ride I had arranged for Tina for Saturday evening unfortunately was cancelled at the last moment. It was a very nice, clear evening and we would have had superb views, but the wind was too strong. So we have to arrange it for another day. We go to Worthing on Sunday morning and drop in at the end of Lily’s 4th birthday party - mayhem! - and then back to Matthew’s to see how the kitchen / dining room re-construction is going. They have been in chaos for weeks.
I go down for my blood test on Friday to find that I have lost over 2 kgs despite all the food consumed in the week - I am 73.2 kgs. My results are: Wbc: 8.2; Neut: 7.5; Lymph: 0.5;
Hbn: 10.8; and PLT: 129. I see Tm Corbett about my mouth ulcers and a rather painful swelling on the back of my hand where I had had a cannula some weeks earlier. He prescribes me a short course of anti-biotics to prevent any possible infection, some anaesthetic mouthwash (Difflam) and increasing the Aciclovir from 3 tablets to five times daily. The lump on the hand is probably a small thrombosis and he says it will go away naturally in time. I have two hours sleep in the afternoon, during which Vikki Bevan leaves a message on the answer phone that my Methylprednisolone next week will have to be the usual dosage - to comply with the clinical trial protocol - but that I will have a nine day course of prednisolone tablets starting on the Saturday following to help wean me off the high dosage steroids and hopefully reduce the possibility of the muscle wastages withdrawal symptoms I experienced last time. Hope it works!
The “birthday” balloon ride I had arranged for Tina for Saturday evening unfortunately was cancelled at the last moment. It was a very nice, clear evening and we would have had superb views, but the wind was too strong. So we have to arrange it for another day. We go to Worthing on Sunday morning and drop in at the end of Lily’s 4th birthday party - mayhem! - and then back to Matthew’s to see how the kitchen / dining room re-construction is going. They have been in chaos for weeks.
Saturday, 8 September 2007
A Break in Ghent
Sunday 1st to Thursday 5th July 2007
At fairly short notice we managed to book ourselves a Ghent city centre B & B for four nights to celebrate Tina’s 60th. There is no point trying to look long term with anything because of the vagaries of my condition and my responses to treatment, but I wanted to make sure Tina’s special day did not pass by unnoticed. Ghent is like Bruges without the “chocolate box” prettiness or image, but it is full of wonderful old Flemish style buildings. It has an industrial past and a much more lived-in feel.
We have a superb B & B on one of the ancient streets with the Stadhuis at one end. We are walking distance from everything, but the rain contrives to limit our wanderings somewhat. It is torrential at times, forcing us to spend a lot of time in bars and restaurants! We have some excellent meals in extremely trendy restaurants and sample the wonderful Belgian beers. I find the days a bit tiring, so we found ourselves back in our room late afternoon for me to have a couple of hours lie down. Also I find that I have started getting mouth ulcers, which detracts from my enjoyment of the lovely food. After four and a half years, I guess the effectiveness of my prophelactic medication is wearing a bit thin. Of course I didn’t bring any Adcortyl or similar, so I have to grin and bear it.
Unfortunately, Tina loses her camera on our second night out and it also transpires that my camera has a fault. So we end up with only a few photographs to remind ourselves of the trip. The good news is that after reporting the loss to the Ghent police, two weeks later it arrives in the post! The honest Belgians show us the way!!
Of course I have to keep the Campath injections going, but without a blood test until Friday, I have no idea whether my bloods are up or down, so I also inject with GCSF to be on the safe side. We are back home Thursday via a big shopping session in Calais and a ferry bursting with noisy school kids.
At fairly short notice we managed to book ourselves a Ghent city centre B & B for four nights to celebrate Tina’s 60th. There is no point trying to look long term with anything because of the vagaries of my condition and my responses to treatment, but I wanted to make sure Tina’s special day did not pass by unnoticed. Ghent is like Bruges without the “chocolate box” prettiness or image, but it is full of wonderful old Flemish style buildings. It has an industrial past and a much more lived-in feel.
We have a superb B & B on one of the ancient streets with the Stadhuis at one end. We are walking distance from everything, but the rain contrives to limit our wanderings somewhat. It is torrential at times, forcing us to spend a lot of time in bars and restaurants! We have some excellent meals in extremely trendy restaurants and sample the wonderful Belgian beers. I find the days a bit tiring, so we found ourselves back in our room late afternoon for me to have a couple of hours lie down. Also I find that I have started getting mouth ulcers, which detracts from my enjoyment of the lovely food. After four and a half years, I guess the effectiveness of my prophelactic medication is wearing a bit thin. Of course I didn’t bring any Adcortyl or similar, so I have to grin and bear it.
Unfortunately, Tina loses her camera on our second night out and it also transpires that my camera has a fault. So we end up with only a few photographs to remind ourselves of the trip. The good news is that after reporting the loss to the Ghent police, two weeks later it arrives in the post! The honest Belgians show us the way!!
Of course I have to keep the Campath injections going, but without a blood test until Friday, I have no idea whether my bloods are up or down, so I also inject with GCSF to be on the safe side. We are back home Thursday via a big shopping session in Calais and a ferry bursting with noisy school kids.
A Quiet Week
Week of 25th to 30th June 2007
I spend this week just ticking over and resting afternoons. Went down to the Day Unit at the RSCH for blood tests both Tuesday and Friday mornings. No problems for me driving this week, so on those days I am up quite early to get Tina to work en route to Brighton. My blood results are ok - Wbc: 2.7 and 5.3; Neut: 2.4 and 4.7; Lymph: 0.3 and 0.5; Hbn: 10.6 and 10.8; and PLT: 159 and 108. My weight moved from 74.2 kgs to 75.6 - I don’t know why, other than I may still have fluid in my legs. I have visits from Tony Collins and Bill Swallow and Anna, Nick and Eva come down on Tuesday from Mull ahead of driving to Salzburg at the weekend on one of their assignments.
I spend this week just ticking over and resting afternoons. Went down to the Day Unit at the RSCH for blood tests both Tuesday and Friday mornings. No problems for me driving this week, so on those days I am up quite early to get Tina to work en route to Brighton. My blood results are ok - Wbc: 2.7 and 5.3; Neut: 2.4 and 4.7; Lymph: 0.3 and 0.5; Hbn: 10.6 and 10.8; and PLT: 159 and 108. My weight moved from 74.2 kgs to 75.6 - I don’t know why, other than I may still have fluid in my legs. I have visits from Tony Collins and Bill Swallow and Anna, Nick and Eva come down on Tuesday from Mull ahead of driving to Salzburg at the weekend on one of their assignments.
Mid Treatment Programme Tests and Consultation
Friday 22nd June 2007
Back to KCH for my consultation with Dr Steve Devereux, having done my Campath injection before leaving for London. Whilst waiting we catch up with Danny and Donna - which is nice - and exchange email addresses. Danny gives me permission to mention his name in my blog. Steve Devereux shows his delight in my CT scan results. Apparently, the team’s response was something like, “Wow, look at that. There’s nothing there!” This is great news. My blood results today are also good - Wbc: 10.4; Hbn: 11.4; PLT: 207; Neut: 9.4; Lymph: 0.87. It is probably too soon after my injection for any Campath effect to reflect in the results. There is no change of news on the donor front - they have one preferred “C Mismatch” donor. But there is still time and the searches will continue in case they are able to find a closer match. I forget to ask if my next Methylprednisilone dosage will be reduced - as Paul Hill had mooted. I hope to find out later. I will continue to take my Campath every week for the next five weeks, including the week we have planned away in Ghent for Tina’s birthday. However, the week for the Methylpred will slide back to the week of 9th July. The whole programme will end on Friday 27th July, provided we have no interruptions for infections, myopathy or whatever. Meanwhile I have “end-of-programme” tests arranged for Monday 30th July and a next appointment with Steve Devereux on Friday 17th August. So everything looks fine for a transplant about mid September. That evening, despite glowering clouds, we join Stephen, Sue and friends in an open air operatic evening of Carmen at Middleton Manor. We are well prepared for a cool and wet evening and are not disappointed, with a steady down pouring for the last 15 minutes!
Week of 18th to 24th June 2007
Well it seemed a good idea to stay over Sunday night and go early on Monday morning direct from Leicestershire down to London for my day of tests, etc. at Kings, but in the event it was horrendous! We thought we had left in good time - just after 7am - but what with heavy traffic and accidents on the A14 and M11, we eventually arrive at KCH at 11.45am - well over an hour late. At least the A12 route through to the Blackwall Tunnel is easy! My tests today are blood counts, bone marrow, an ECG and a CT scan. Today does not run smoothly. The usual routine is to get my blood sample done first. I wait about 40 minutes without being called - which has never happened before - only to find that one of the receptionists had put my “Urgent” blood sample request in the wrong place! Doh!! My bone marrow sample is taken by Dr Waseem - it never gets any better! I then find that the CT scan is not scheduled for today at all, but for ten days time. By a combination of charm and insistence we manage to persuade the lady in charge of the CT team to fit me in today. Fortunately the ECG is done immediately and we leave after a late sandwich lunch. I inject my Campath when I get home from London and I get my blood results on Tuesday; they show that I am neutropenic and I guess I probably have been all over the weekend as well(!) - Wbc: 1.35; Hbn: 11.5; PLT: 209; Neut: 0.81; and Lymph: 0.5. - so GCSF straight away! I arrange for an additional blood test at the RSCH on Wednesday morning to make sure I on the right track with taking my Campath and GCSF. My counts have bounced back again - Wbc: 6.1; Hbn: 10.5; PLT: 147; Neut: 5.5; Lymph: 0.4. We have a nice evening at Cath and Jim’s for dinner of a splendid Spanish pork casserole - my current favourite! - but had put them on notice on Tuesday that I may turn up neutropenic! Fortunately that is not how it turns out. I pass on the GCSF injection on Thursday on the strength of my blood results, but have one on Saturday as a precaution. I have an easy Saturday and sleep for a couple of hours in the afternoon, before we go out to Norma Elder’s surprise 80th birthday celebrations - really nice. On Sunday we leave Mass at 11.15am and make haste to Cranbrook to meet up with Tony and Pam for Sunday lunch at the George Hotel. Great to meet up with them again and enjoy a good meal. I am dozy as Tina drives home and I have over two hours sleep when we get home - from about 6.45pm. I still have a good night’s sleep on top of that !
Back to KCH for my consultation with Dr Steve Devereux, having done my Campath injection before leaving for London. Whilst waiting we catch up with Danny and Donna - which is nice - and exchange email addresses. Danny gives me permission to mention his name in my blog. Steve Devereux shows his delight in my CT scan results. Apparently, the team’s response was something like, “Wow, look at that. There’s nothing there!” This is great news. My blood results today are also good - Wbc: 10.4; Hbn: 11.4; PLT: 207; Neut: 9.4; Lymph: 0.87. It is probably too soon after my injection for any Campath effect to reflect in the results. There is no change of news on the donor front - they have one preferred “C Mismatch” donor. But there is still time and the searches will continue in case they are able to find a closer match. I forget to ask if my next Methylprednisilone dosage will be reduced - as Paul Hill had mooted. I hope to find out later. I will continue to take my Campath every week for the next five weeks, including the week we have planned away in Ghent for Tina’s birthday. However, the week for the Methylpred will slide back to the week of 9th July. The whole programme will end on Friday 27th July, provided we have no interruptions for infections, myopathy or whatever. Meanwhile I have “end-of-programme” tests arranged for Monday 30th July and a next appointment with Steve Devereux on Friday 17th August. So everything looks fine for a transplant about mid September. That evening, despite glowering clouds, we join Stephen, Sue and friends in an open air operatic evening of Carmen at Middleton Manor. We are well prepared for a cool and wet evening and are not disappointed, with a steady down pouring for the last 15 minutes!
Week of 18th to 24th June 2007
Well it seemed a good idea to stay over Sunday night and go early on Monday morning direct from Leicestershire down to London for my day of tests, etc. at Kings, but in the event it was horrendous! We thought we had left in good time - just after 7am - but what with heavy traffic and accidents on the A14 and M11, we eventually arrive at KCH at 11.45am - well over an hour late. At least the A12 route through to the Blackwall Tunnel is easy! My tests today are blood counts, bone marrow, an ECG and a CT scan. Today does not run smoothly. The usual routine is to get my blood sample done first. I wait about 40 minutes without being called - which has never happened before - only to find that one of the receptionists had put my “Urgent” blood sample request in the wrong place! Doh!! My bone marrow sample is taken by Dr Waseem - it never gets any better! I then find that the CT scan is not scheduled for today at all, but for ten days time. By a combination of charm and insistence we manage to persuade the lady in charge of the CT team to fit me in today. Fortunately the ECG is done immediately and we leave after a late sandwich lunch. I inject my Campath when I get home from London and I get my blood results on Tuesday; they show that I am neutropenic and I guess I probably have been all over the weekend as well(!) - Wbc: 1.35; Hbn: 11.5; PLT: 209; Neut: 0.81; and Lymph: 0.5. - so GCSF straight away! I arrange for an additional blood test at the RSCH on Wednesday morning to make sure I on the right track with taking my Campath and GCSF. My counts have bounced back again - Wbc: 6.1; Hbn: 10.5; PLT: 147; Neut: 5.5; Lymph: 0.4. We have a nice evening at Cath and Jim’s for dinner of a splendid Spanish pork casserole - my current favourite! - but had put them on notice on Tuesday that I may turn up neutropenic! Fortunately that is not how it turns out. I pass on the GCSF injection on Thursday on the strength of my blood results, but have one on Saturday as a precaution. I have an easy Saturday and sleep for a couple of hours in the afternoon, before we go out to Norma Elder’s surprise 80th birthday celebrations - really nice. On Sunday we leave Mass at 11.15am and make haste to Cranbrook to meet up with Tony and Pam for Sunday lunch at the George Hotel. Great to meet up with them again and enjoy a good meal. I am dozy as Tina drives home and I have over two hours sleep when we get home - from about 6.45pm. I still have a good night’s sleep on top of that !
Friday, 15 June 2007
Back into Hospital with Muscle Wastage and an Infection
Week of 4th to 10th June 2007
I am catching up more than two weeks late for reasons which will unfold in the following entries. On Monday I am feeling even more weary than yesterday as if I am anaemic. I am drinking plenty of iced water and my appetite is ‘so- so’. I go for a blood test at the RSCH on Tuesday. My weight is 77.6 kgs. This absolutely correct as - for the first time - I use the large weighing machine in the Day Unit rather than the bathroom scales in the toilets. My blood results are good: Wbc: 5.1; Hbn: 12.3; PLT: 102; Neut: 4.9; Lymph: 0.1 - and show that I am not anaemic. So I ask to be checked over for my aching legs but Panos finds nothing to explain what is happening. Tuesday night is really bad, I wake with pain in my thighs and can hardly walk. I call Steve Devereux who thinks it could be myopathy (muscle wastage) as a result of the Methylpred. He tells me to get down to the RSCH for them to check it out again. I am seen by Panos and Tim Corbett and another blood test shows something that might explain the problem. (This turns out to be a CRP reading of 128 which I only get to hear about two days later.) I am admitted there and then but have an injection of Tazocin before leaving the Day Unit. I am feeling lousy, look appalling, cannot walk without extreme pain and we don’t know why. So I am back to Howard 2 ward via an MRI scan with a porter pushing me there in a wheelchair, renewing acquaintances after a ten week interlude! Tina has been with me since collecting me from home at 10.30pm. It has been a rotten day for her, obviously she is very anxious, but eventually she has to go home. I have a temperature check at 6.30pm and it is 38.2c - fever pitch! Later that evening I have a big sweat, soaking my T shirt right through. This is not good!! I have a fitful night and any leg movement is very painful. Shuffling to the toilet is a nightmare.
I am seen next day by Paul Hill, during Matthew‘s visit. My left thigh is now less painful than my right and he believes I have muscle wastage (sympathy) as a consequence of the dosage of Methylprednisolone. The infection is thought to be coincidental and not likely to be connected to the muscle problem. I am to have 48 hours of Tazocin. My blood results are good, but my CRP is now 172. By the time Tina comes to see me late afternoon, things are starting to make a bit more sense. Thursday night I have a better night’s sleep and when Tina rings me in the morning, I can move my legs about without pain! - although walking is still very difficult and makes my thighs hurt. My late morning consultant’s visit - the new Dr. Ros Johnston - is positive. Await a turn down in the CRP level, move on to Ciprofloxin and expect to be discharged soonest afterwards. My blood results today are: Wbc: 3.3; Hbn: 10.4; PLT: 82; Neut: 3.0; Lymph: 0.2; CRP: 90. My weight is 76.5 kgs. Although I have a restless Friday night, I am much improved by Saturday morning, but have to wait for Paul Hill to see me prior to discharge. He does not know what the infection was, but is satisfied that the muscle problem was caused by the Methylpred. He will discuss with Steve Devereux whether the dosage should be reduced next time, provided it is allowed within the protocol. It is decided that I should resume my Campath on Wednesday, so that I have lost exactly one week from the programme by this little episode. I will have blood tests twice weekly to keep track of my Neutrophil counts in case I become neutropenic or need to take GCSF - this applies if my count is 2.0 or less. He advises me to do simple exercises as I need to strengthen my thigh muscles - lifting up my leg with a bag of frozen peas balanced on my foot. In fact I use our beanbag door stop; it is slightly heavier. Tina collects me, I say my farewells once more to Howard 2 ward and I leave about 2pm. I spend Sunday in recovery mode!
Although it has done its job in the blood and lymph glands, my three lots of Methylprednisolone have each been accompanied - followed - by very unpleasant side effects or similar. The first session decimated my tastebuds and appetite for at least two weeks. The second session was followed by five weeks in hospital with the chest infection and CMV; and now the myopathy and another infection with this the third session. Not so good, is it?
I am catching up more than two weeks late for reasons which will unfold in the following entries. On Monday I am feeling even more weary than yesterday as if I am anaemic. I am drinking plenty of iced water and my appetite is ‘so- so’. I go for a blood test at the RSCH on Tuesday. My weight is 77.6 kgs. This absolutely correct as - for the first time - I use the large weighing machine in the Day Unit rather than the bathroom scales in the toilets. My blood results are good: Wbc: 5.1; Hbn: 12.3; PLT: 102; Neut: 4.9; Lymph: 0.1 - and show that I am not anaemic. So I ask to be checked over for my aching legs but Panos finds nothing to explain what is happening. Tuesday night is really bad, I wake with pain in my thighs and can hardly walk. I call Steve Devereux who thinks it could be myopathy (muscle wastage) as a result of the Methylpred. He tells me to get down to the RSCH for them to check it out again. I am seen by Panos and Tim Corbett and another blood test shows something that might explain the problem. (This turns out to be a CRP reading of 128 which I only get to hear about two days later.) I am admitted there and then but have an injection of Tazocin before leaving the Day Unit. I am feeling lousy, look appalling, cannot walk without extreme pain and we don’t know why. So I am back to Howard 2 ward via an MRI scan with a porter pushing me there in a wheelchair, renewing acquaintances after a ten week interlude! Tina has been with me since collecting me from home at 10.30pm. It has been a rotten day for her, obviously she is very anxious, but eventually she has to go home. I have a temperature check at 6.30pm and it is 38.2c - fever pitch! Later that evening I have a big sweat, soaking my T shirt right through. This is not good!! I have a fitful night and any leg movement is very painful. Shuffling to the toilet is a nightmare.
I am seen next day by Paul Hill, during Matthew‘s visit. My left thigh is now less painful than my right and he believes I have muscle wastage (sympathy) as a consequence of the dosage of Methylprednisolone. The infection is thought to be coincidental and not likely to be connected to the muscle problem. I am to have 48 hours of Tazocin. My blood results are good, but my CRP is now 172. By the time Tina comes to see me late afternoon, things are starting to make a bit more sense. Thursday night I have a better night’s sleep and when Tina rings me in the morning, I can move my legs about without pain! - although walking is still very difficult and makes my thighs hurt. My late morning consultant’s visit - the new Dr. Ros Johnston - is positive. Await a turn down in the CRP level, move on to Ciprofloxin and expect to be discharged soonest afterwards. My blood results today are: Wbc: 3.3; Hbn: 10.4; PLT: 82; Neut: 3.0; Lymph: 0.2; CRP: 90. My weight is 76.5 kgs. Although I have a restless Friday night, I am much improved by Saturday morning, but have to wait for Paul Hill to see me prior to discharge. He does not know what the infection was, but is satisfied that the muscle problem was caused by the Methylpred. He will discuss with Steve Devereux whether the dosage should be reduced next time, provided it is allowed within the protocol. It is decided that I should resume my Campath on Wednesday, so that I have lost exactly one week from the programme by this little episode. I will have blood tests twice weekly to keep track of my Neutrophil counts in case I become neutropenic or need to take GCSF - this applies if my count is 2.0 or less. He advises me to do simple exercises as I need to strengthen my thigh muscles - lifting up my leg with a bag of frozen peas balanced on my foot. In fact I use our beanbag door stop; it is slightly heavier. Tina collects me, I say my farewells once more to Howard 2 ward and I leave about 2pm. I spend Sunday in recovery mode!
Although it has done its job in the blood and lymph glands, my three lots of Methylprednisolone have each been accompanied - followed - by very unpleasant side effects or similar. The first session decimated my tastebuds and appetite for at least two weeks. The second session was followed by five weeks in hospital with the chest infection and CMV; and now the myopathy and another infection with this the third session. Not so good, is it?
Session 3 of Methylprednisolone
Week of 28th May to 3rd June 2007
As this week starts with a Bank Holiday, I am having my Methylprednisolone from Monday through to Saturday, as well as giving myself my three days of Campath. I had to remind myself what the steroid dosage is; 2 grams in 250 ml of saline solution - a hefty dosage - or ‘industrial quantities’ as Steve Devereux puts it! It is also eight weeks since the last lot rather than the four weeks it should have been, so will that make any difference? The week goes quite well. I feel tired most afternoons and have one or two hours sleep each day. I also have that strange dulled vision that comes with Methylpred. - as if my specs need cleaning. On Tuesday I felt quite light headed and on Saturday, a bit sickly. On the other hand I had a pint with Jim on Wednesday and lunch with Keith at the Royal Oak on Thursday, followed by a visit to the farm barn conversion they are having in Henfield. I also had to change a wheel on the A27 coming home on Saturday as we had a complete blow-out and shredded tyre - really annoying after just 2400 miles. So that was a test of my energy levels. Needless to say I was very tired afterwards and had a good sleep in the afternoon. As the week progressed so my taste buds started to be affected, with the taste of some things being altered more than others. But the good news is that my overall appetite seemed to hold up ok. But I found that I want Metoclopromide to ensure I don’t feel nauseous and I ask for a spray to deal with a dry mouth. My weight hovers around 76 kgs all week but whilst my Hbn is 10.4 across three blood tests and my PLTs average 142, my Wbc went from 1.2 to 6.1 and 5.7 and my Neutrophils from 1.0 to 5.3 and 5.0! I am told this is the Methylpred.
Our computer decides to die this week. Not only that, but it is giving off a nasty smell. We get a local PC engineer to have a look at it and he is able to remove most of the data files, but stops short of email and its address book - which is a right pain. Here’s hoping he can sort those out as well. It has been a real frustration these past two months as I have been off email all that time and recently Tina’s went down as well. Meanwhile we decide to use my brand new laptop as our main PC, complete with WiFi, bells and whistles.
I get an interesting call from Paul Hill telling me that the Health Trust’s legal person has viewed my blog and pointed out that I have referred to fellow patients by name. This contravenes the Data Protection Act apparently and I am asked to remove them. I suppose if I had got their permission, it would have been alright - shame really. On Sunday I am feeling really weary and my legs are aching. My food is just about ok. I am not enjoying my breakfasts now and my Saturday and Sunday dinners have been good only because it’s Spanish pork casserole.
As this week starts with a Bank Holiday, I am having my Methylprednisolone from Monday through to Saturday, as well as giving myself my three days of Campath. I had to remind myself what the steroid dosage is; 2 grams in 250 ml of saline solution - a hefty dosage - or ‘industrial quantities’ as Steve Devereux puts it! It is also eight weeks since the last lot rather than the four weeks it should have been, so will that make any difference? The week goes quite well. I feel tired most afternoons and have one or two hours sleep each day. I also have that strange dulled vision that comes with Methylpred. - as if my specs need cleaning. On Tuesday I felt quite light headed and on Saturday, a bit sickly. On the other hand I had a pint with Jim on Wednesday and lunch with Keith at the Royal Oak on Thursday, followed by a visit to the farm barn conversion they are having in Henfield. I also had to change a wheel on the A27 coming home on Saturday as we had a complete blow-out and shredded tyre - really annoying after just 2400 miles. So that was a test of my energy levels. Needless to say I was very tired afterwards and had a good sleep in the afternoon. As the week progressed so my taste buds started to be affected, with the taste of some things being altered more than others. But the good news is that my overall appetite seemed to hold up ok. But I found that I want Metoclopromide to ensure I don’t feel nauseous and I ask for a spray to deal with a dry mouth. My weight hovers around 76 kgs all week but whilst my Hbn is 10.4 across three blood tests and my PLTs average 142, my Wbc went from 1.2 to 6.1 and 5.7 and my Neutrophils from 1.0 to 5.3 and 5.0! I am told this is the Methylpred.
Our computer decides to die this week. Not only that, but it is giving off a nasty smell. We get a local PC engineer to have a look at it and he is able to remove most of the data files, but stops short of email and its address book - which is a right pain. Here’s hoping he can sort those out as well. It has been a real frustration these past two months as I have been off email all that time and recently Tina’s went down as well. Meanwhile we decide to use my brand new laptop as our main PC, complete with WiFi, bells and whistles.
I get an interesting call from Paul Hill telling me that the Health Trust’s legal person has viewed my blog and pointed out that I have referred to fellow patients by name. This contravenes the Data Protection Act apparently and I am asked to remove them. I suppose if I had got their permission, it would have been alright - shame really. On Sunday I am feeling really weary and my legs are aching. My food is just about ok. I am not enjoying my breakfasts now and my Saturday and Sunday dinners have been good only because it’s Spanish pork casserole.
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