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 !
Saturday, 8 September 2007
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.
Saturday, 26 May 2007
Great News from the Donor Search
Friday 25th May 2007
We are up to Kings by 10.30am and after having my blood test are soon seeing Andre Jansen, the transplant co-ordinator, to get some insight into the donor search process. I wanted to include some information about this on to my cll blog as it may be of some use to others in a similar predicament. The big news is that the Anthony Nolan Trust has identified four potential donors for me, with the possibility of two more. These are described as “C” code mismatches. The search entails comparing my blood with batches of six others against about 250 identification features or “codes” within the blood cell make-up. A “C” code mismatch is where more than 230 codes match, including all the key ones. If nothing better is found then a “C” code mismatch would be “adequate” for a transplant. The prospective donor is then asked to give a blood sample for health screening and subject to his or her agreement, the stem cell harvesting can go ahead, either at Kings or in the donor’s home country if he or she comes from a long way away. Steve Devereux is upbeat about things. I have no detectable enlarged lymph nodes, although the March CT scan showed that I had some in my abdomen. My blood results today are also pretty good: Wbc: 0.9; Hbn: 10.7; PLT: 184; Neut: 0.8; Lymph: 0.1. However my iron levels are rather low and he will request the RSCH monitor them over the weeks to come. My weight today is 75.3 kgs. and blood pressure 152/77. He wants me to continue with the remaining eight weeks of the treatment programme to get my bone marrow in the best possible state for the transplant. It now appears that the most likely time for CMV to emerge is within the first four to six weeks of treatment, with a lesser chance of a recurrence after that. So CMV may not be as much a problem as earlier thought and Methylprednisolone is not expected to drive down the white cell count any further. We are now exactly half way through the 16 weeks of the clinical trial treatment programme, so it is time again for intermediate progress checks. I will have to return to Kings in just over a week’s time for a CT scan and a bone marrow sample - ugh deep joy! But the other good news from today is that my “clean” diet does not mean I cannot drink draught beer. We mentioned it in passing to Steve Devereux and he could not understand why it was on the list of things to avoid - so I was able to celebrate the all round good news at lunch at the Sun and Doves with a pint of Old Speckled Hen! We shared our good news with Anna and Matthew over the telephone and text messages went out to sisters and brothers. This has been the best day we have had for months and the best news I have entered on my chronic lymphocytic leukaemia blog since I started it.
Week of 21st to 28th May 2007
I start the week with my Campath injection and then call Jonathan Samuel to discuss that he check with Steve Devereux that I will need my Campath supply topped up when I go up to Kings on Friday. I also make an appointment for Friday with Andre Jansen to talk about the bone marrow donor search. I have my weekly blood test at the RSCH on Tuesday. The results are good: Wbc:1.0; Hbn: 11.4; PLT: 168; Neut: 0.8; Lymph 0.1; my weight is 75 kgs. and my sodium levels are back to normal! I make provisional arrangements for the Methylprednisolone sessions for next week. That day Anna calls from France to tell us that they are approaching Dieppe at the end of their drive up from Greece, but that she has a sore throat and a cough - so they cannot come to us to stay, which is a shame. However, as the weather is so good, we later arrange to meet up for a later afternoon picnic at the Jack and Jill. That way we see each other, but with Anna sitting “down wind”, should manage to avoid any nasties being transferred to me! We are the centre of attention for ten rather large horses, of the Cob variety, who wanted to join us eating the food! It is Thursday and unfortunately, due to my neutropenia I have to cancel going to the ex-CSD gathering at Lewes to mark Chris Pascoe’s retirement. I hope to catch up with him later. Instead I spend Thursday dibbling in the back garden and fixing up a window box outside the kitchen window. I am feeling very good in myself and have no effect from the Campath, other than possibly being a little tired on “Campath days”. On Saturday we have visits from Peter Felchlin en route from L.A. to the Scottish golf courses, Anna with Eva - going up to Mull themselves on Sunday - and Matthew with Ella, who is staying with us until Monday. The good weather has gone, the clouds are heavy and the temperature has dropped at least 5 Celsius. Typical for a Bank Holiday!
We are up to Kings by 10.30am and after having my blood test are soon seeing Andre Jansen, the transplant co-ordinator, to get some insight into the donor search process. I wanted to include some information about this on to my cll blog as it may be of some use to others in a similar predicament. The big news is that the Anthony Nolan Trust has identified four potential donors for me, with the possibility of two more. These are described as “C” code mismatches. The search entails comparing my blood with batches of six others against about 250 identification features or “codes” within the blood cell make-up. A “C” code mismatch is where more than 230 codes match, including all the key ones. If nothing better is found then a “C” code mismatch would be “adequate” for a transplant. The prospective donor is then asked to give a blood sample for health screening and subject to his or her agreement, the stem cell harvesting can go ahead, either at Kings or in the donor’s home country if he or she comes from a long way away. Steve Devereux is upbeat about things. I have no detectable enlarged lymph nodes, although the March CT scan showed that I had some in my abdomen. My blood results today are also pretty good: Wbc: 0.9; Hbn: 10.7; PLT: 184; Neut: 0.8; Lymph: 0.1. However my iron levels are rather low and he will request the RSCH monitor them over the weeks to come. My weight today is 75.3 kgs. and blood pressure 152/77. He wants me to continue with the remaining eight weeks of the treatment programme to get my bone marrow in the best possible state for the transplant. It now appears that the most likely time for CMV to emerge is within the first four to six weeks of treatment, with a lesser chance of a recurrence after that. So CMV may not be as much a problem as earlier thought and Methylprednisolone is not expected to drive down the white cell count any further. We are now exactly half way through the 16 weeks of the clinical trial treatment programme, so it is time again for intermediate progress checks. I will have to return to Kings in just over a week’s time for a CT scan and a bone marrow sample - ugh deep joy! But the other good news from today is that my “clean” diet does not mean I cannot drink draught beer. We mentioned it in passing to Steve Devereux and he could not understand why it was on the list of things to avoid - so I was able to celebrate the all round good news at lunch at the Sun and Doves with a pint of Old Speckled Hen! We shared our good news with Anna and Matthew over the telephone and text messages went out to sisters and brothers. This has been the best day we have had for months and the best news I have entered on my chronic lymphocytic leukaemia blog since I started it.
Week of 21st to 28th May 2007
I start the week with my Campath injection and then call Jonathan Samuel to discuss that he check with Steve Devereux that I will need my Campath supply topped up when I go up to Kings on Friday. I also make an appointment for Friday with Andre Jansen to talk about the bone marrow donor search. I have my weekly blood test at the RSCH on Tuesday. The results are good: Wbc:1.0; Hbn: 11.4; PLT: 168; Neut: 0.8; Lymph 0.1; my weight is 75 kgs. and my sodium levels are back to normal! I make provisional arrangements for the Methylprednisolone sessions for next week. That day Anna calls from France to tell us that they are approaching Dieppe at the end of their drive up from Greece, but that she has a sore throat and a cough - so they cannot come to us to stay, which is a shame. However, as the weather is so good, we later arrange to meet up for a later afternoon picnic at the Jack and Jill. That way we see each other, but with Anna sitting “down wind”, should manage to avoid any nasties being transferred to me! We are the centre of attention for ten rather large horses, of the Cob variety, who wanted to join us eating the food! It is Thursday and unfortunately, due to my neutropenia I have to cancel going to the ex-CSD gathering at Lewes to mark Chris Pascoe’s retirement. I hope to catch up with him later. Instead I spend Thursday dibbling in the back garden and fixing up a window box outside the kitchen window. I am feeling very good in myself and have no effect from the Campath, other than possibly being a little tired on “Campath days”. On Saturday we have visits from Peter Felchlin en route from L.A. to the Scottish golf courses, Anna with Eva - going up to Mull themselves on Sunday - and Matthew with Ella, who is staying with us until Monday. The good weather has gone, the clouds are heavy and the temperature has dropped at least 5 Celsius. Typical for a Bank Holiday!
Monday, 21 May 2007
Campath Resumed
Week of 14th to 20th May 2007
This week starts with Tina and my going to Thanet for the funeral of my Aunt Winnie - the last of my Mum’s family of seven sisters and three brothers. She was 89, but had not been well of late. Often crematorium services can be rather dour, depressing affairs, but Win’s was a good one, befitting her cheerful disposition. Her coffin entered to “String of Pearls” and left to “Tea for Two Cha - Cha -Cha” - she so loved dancing! It was great to see cousins and second cousins - some for the first time in 40 or 50 years! Had I known what my blood test the next day told me, I should not have been there! The Tuesday blood test results at the RSCH are: Wbc: 0.8; Hbn: 11.4; PLT: 92; Neut: 0.7 - so I am now neutropenic! My weight is 76 kgs; I am also told that at 150 my sodium level is too high. I have a problem with that because I am finding that all my food tastes far too bland without additional salt. I am sure that it is not good to add more salt, but I am only human! Now I have to go back on to the “clean diet” regime, avoid largish gatherings and - a thousand curses - not drink draught bitter!
Next morning I have a surprise visit from the blessed Mary - Mary Roberts - en route home to Devon. This is great as we update each other on things, especially the many and various happenings amongst her former family tribe!! Terry and Lesley come for tea in the afternoon. We indulge ourselves in some extremely vintage Dizzy Gillespie on a CD I had not yet played. I also check with Paul Hill at the PRH that I should have a blood test there on Friday before giving myself Campath in case my neutrophils are below 0.5. In the event they are not and surprisingly my blood results are up on Tuesday’s at: Wbc: 0.9; Hbn: 11.7; Neut: 0.8; and Lymph: 0.04 - except my lymphocyte count which could hardly be much lower! I am feeling really good in myself, although I am finding that I am tired in the afternoons and am tending to have a doze for an hour or so. Is that real or am I being lazy? - the jury is out on that one! My taste buds are still a bit “up and down” depending on what I am eating. For example, bread is bland, but a bacon sandwich is good, especially with Tabasco sauce and meat tastes good. I am still not sure that I am tasting wine, especially red wine, as I used to. It seems that the long arm of Methylprednisolone stretches a good ten weeks and maybe more, as that is how long it has been since I last had any. Having said that my daily medications, particularly the Itroconozole and Nystatin, cannot help but dull the tastebuds as well.
We have Linda and Paul down for the weekend. Tina and Linda go shopping in Tunbridge Wells on Saturday while I do a few “just jobs”, like cutting the front grass and taking down the untidy collection of pictures on the wall above the staircase - a long overdue assignment! Paul and I go to the Royal Oak for a beer and sandwich lunch and I have to make-do with a Guinness, rather than indulge in a pint of Harveys. I am not sure if I should have had a beef sandwich, cut off the joint, but I did - to hell with it! Stephen and Sue join us for dinner of Spanish pork casserole, with a prosciutto and melon starter, cheese and a apricot and almond pie - delicious! Sunday was a low-key affair. I decided I should not go to Church, which would no doubt be a full house with John doing a folk Mass. After a light lunch, we dozed the afternoon away! and then had a dinner of leftovers from last night.
Week of 7th to 13th May 2007
Started with a Bank Holiday and Sarah and Paul round for lunch. I was due to resume my treatment programme on Tuesday with a self administered dose of Campath. Steve Devereux had advised that I should do this under supervision at the RSCH day unit as I had not had Campath for over eight weeks, I might get a reaction and it would be wise to be there as a precaution. Besides I also needed to have a weekly blood test. Would you believe it - I rolled back my shirt sleeve to see where my blood sample might best be taken and there was a slight rash! - another on the other arm and more slight rashes in various other places. I was checked over by the SHO and - maybe psycho-sematically - felt a bit heady, as if I was about to start a cold or something, bearing in mind my tendency to have allergic rash reactions to cold-type infections. Two hours after my arrival at the day unit it was suggested that I should go ahead and take the Campath. But I was not happy. How would they be able to tell if any further rash that developed was a response to the Campath or not? So I refused to do it and arranged to come back on Thursday. Besides Terry and Lesley, who had brought me down, had been waiting around town for two hours already and it was unfair to ask them to wait yet another hour until I was safe to leave - or more if that wasn’t the case!
Wednesday and I was visiting the Job Centre - Plus building in Haywards Heath to deliver my application form for Incapacity Benefit. “Are you signing on?” was the greeting from the burly, but somewhat older-than-might-be-expected security guard. I was able to see an official without even having to wait - which was a surprise. My application now goes on to the regional centre at Bognor and I should hear something in a few weeks. My P45s are copied and given back to me and I am given a copy of my doctor’s certificate, in case I have further need of it. On Thursday I am back at the RSCH, courtesy of Keith, having my Campath injection supervised and ensuring there is no reaction. Before the injection I am checked over again by Panos, the SHO. This is followed by a further check over by Paul Hill, who is here with his Thursday clinic. Nice to see him again. I get a print-out of Tuesday’s blood results, which are:- Wbc: 1.9; Hbn: 11.7; PLT: 96; Neut; 1.2; and Lymph: 0.2. I hadn’t noticed until Tina pointed out later that my white cell counts had gone down quite a bit since my last blood test two weeks ago - and I haven’t had any treatment!
On Friday I have a check over at the dentist and I need a couple of small fillings - “patching up” as he described it. He asked me about the discolouring of my lower front teeth. I am rather embarrassed to say that I had not noticed that my teeth had been blackened. I can only put this down to the Corsodyl, as it had done similar to my tongue. Hopefully when I get on to the mint version, this will all change. We have Val and Michel over for dinner on Saturday evening and Jim and Cath round for lunchtime drinks on Sunday. Meanwhile I have a Campath injection on Saturday. I have felt well all week and am constantly remarking to people I meet that all the time I am not having treatment, I am looking and feeling fine - for the time being!
This week starts with Tina and my going to Thanet for the funeral of my Aunt Winnie - the last of my Mum’s family of seven sisters and three brothers. She was 89, but had not been well of late. Often crematorium services can be rather dour, depressing affairs, but Win’s was a good one, befitting her cheerful disposition. Her coffin entered to “String of Pearls” and left to “Tea for Two Cha - Cha -Cha” - she so loved dancing! It was great to see cousins and second cousins - some for the first time in 40 or 50 years! Had I known what my blood test the next day told me, I should not have been there! The Tuesday blood test results at the RSCH are: Wbc: 0.8; Hbn: 11.4; PLT: 92; Neut: 0.7 - so I am now neutropenic! My weight is 76 kgs; I am also told that at 150 my sodium level is too high. I have a problem with that because I am finding that all my food tastes far too bland without additional salt. I am sure that it is not good to add more salt, but I am only human! Now I have to go back on to the “clean diet” regime, avoid largish gatherings and - a thousand curses - not drink draught bitter!
Next morning I have a surprise visit from the blessed Mary - Mary Roberts - en route home to Devon. This is great as we update each other on things, especially the many and various happenings amongst her former family tribe!! Terry and Lesley come for tea in the afternoon. We indulge ourselves in some extremely vintage Dizzy Gillespie on a CD I had not yet played. I also check with Paul Hill at the PRH that I should have a blood test there on Friday before giving myself Campath in case my neutrophils are below 0.5. In the event they are not and surprisingly my blood results are up on Tuesday’s at: Wbc: 0.9; Hbn: 11.7; Neut: 0.8; and Lymph: 0.04 - except my lymphocyte count which could hardly be much lower! I am feeling really good in myself, although I am finding that I am tired in the afternoons and am tending to have a doze for an hour or so. Is that real or am I being lazy? - the jury is out on that one! My taste buds are still a bit “up and down” depending on what I am eating. For example, bread is bland, but a bacon sandwich is good, especially with Tabasco sauce and meat tastes good. I am still not sure that I am tasting wine, especially red wine, as I used to. It seems that the long arm of Methylprednisolone stretches a good ten weeks and maybe more, as that is how long it has been since I last had any. Having said that my daily medications, particularly the Itroconozole and Nystatin, cannot help but dull the tastebuds as well.
We have Linda and Paul down for the weekend. Tina and Linda go shopping in Tunbridge Wells on Saturday while I do a few “just jobs”, like cutting the front grass and taking down the untidy collection of pictures on the wall above the staircase - a long overdue assignment! Paul and I go to the Royal Oak for a beer and sandwich lunch and I have to make-do with a Guinness, rather than indulge in a pint of Harveys. I am not sure if I should have had a beef sandwich, cut off the joint, but I did - to hell with it! Stephen and Sue join us for dinner of Spanish pork casserole, with a prosciutto and melon starter, cheese and a apricot and almond pie - delicious! Sunday was a low-key affair. I decided I should not go to Church, which would no doubt be a full house with John doing a folk Mass. After a light lunch, we dozed the afternoon away! and then had a dinner of leftovers from last night.
Week of 7th to 13th May 2007
Started with a Bank Holiday and Sarah and Paul round for lunch. I was due to resume my treatment programme on Tuesday with a self administered dose of Campath. Steve Devereux had advised that I should do this under supervision at the RSCH day unit as I had not had Campath for over eight weeks, I might get a reaction and it would be wise to be there as a precaution. Besides I also needed to have a weekly blood test. Would you believe it - I rolled back my shirt sleeve to see where my blood sample might best be taken and there was a slight rash! - another on the other arm and more slight rashes in various other places. I was checked over by the SHO and - maybe psycho-sematically - felt a bit heady, as if I was about to start a cold or something, bearing in mind my tendency to have allergic rash reactions to cold-type infections. Two hours after my arrival at the day unit it was suggested that I should go ahead and take the Campath. But I was not happy. How would they be able to tell if any further rash that developed was a response to the Campath or not? So I refused to do it and arranged to come back on Thursday. Besides Terry and Lesley, who had brought me down, had been waiting around town for two hours already and it was unfair to ask them to wait yet another hour until I was safe to leave - or more if that wasn’t the case!
Wednesday and I was visiting the Job Centre - Plus building in Haywards Heath to deliver my application form for Incapacity Benefit. “Are you signing on?” was the greeting from the burly, but somewhat older-than-might-be-expected security guard. I was able to see an official without even having to wait - which was a surprise. My application now goes on to the regional centre at Bognor and I should hear something in a few weeks. My P45s are copied and given back to me and I am given a copy of my doctor’s certificate, in case I have further need of it. On Thursday I am back at the RSCH, courtesy of Keith, having my Campath injection supervised and ensuring there is no reaction. Before the injection I am checked over again by Panos, the SHO. This is followed by a further check over by Paul Hill, who is here with his Thursday clinic. Nice to see him again. I get a print-out of Tuesday’s blood results, which are:- Wbc: 1.9; Hbn: 11.7; PLT: 96; Neut; 1.2; and Lymph: 0.2. I hadn’t noticed until Tina pointed out later that my white cell counts had gone down quite a bit since my last blood test two weeks ago - and I haven’t had any treatment!
On Friday I have a check over at the dentist and I need a couple of small fillings - “patching up” as he described it. He asked me about the discolouring of my lower front teeth. I am rather embarrassed to say that I had not noticed that my teeth had been blackened. I can only put this down to the Corsodyl, as it had done similar to my tongue. Hopefully when I get on to the mint version, this will all change. We have Val and Michel over for dinner on Saturday evening and Jim and Cath round for lunchtime drinks on Sunday. Meanwhile I have a Campath injection on Saturday. I have felt well all week and am constantly remarking to people I meet that all the time I am not having treatment, I am looking and feeling fine - for the time being!
Consultancy at Kings – no Treatment – and a Few Days in Honfleur
Week of 30th April to 6th May 2007
With some helpful guidance from Anna, we found a rather attractive B & B in Honfleur on the internet, via Alistair Sawday’s website and I was lucky enough to be able to book three nights there - Tuesday to Thursday incl. Tina had to work on the Monday, otherwise we would have made it four nights. So we were up at the crack of dawn on Tuesday and catching an early ferry from Newhaven to Dieppe. Had a superb break in a great B & B in an extremely attractive town and the weather was really good - much as it was in the UK. Naturally we ate very well, although I must confess I did not enjoy the fish as much as I had hoped - and the north French coast tends to go a bundle on fish! I guess it is the effects of all my medication still dulling my taste buds. We also did a good deal of walking; nothing too energetic, but enough to get the sun on our faces. So I came back looking quite healthy, despite not having had any treatment for the past eight weeks! I am saying to people that I feel a bit of a fraud. I am looking well because I am not having treatment and that the moment they try to make me better that’s when I start to look ill (!!) We went for Sunday lunch at Stephen and Sue’s and walked off our meal with the two mile stroll home.
Friday 27th April 2007
The day of my much awaited appointment with Dr. Steve Devereux at KCH. My bloods were once again pretty good - Wbc: 2.6; Hbn: 12.2; PLT: 173; Neut: 1.9; Lymph: 0.29. He was very pleased with both blood and bone marrow results, the latter showing less than 5% CLL remaining - which is apparently a good situation after just five weeks of therapy. Having said that, he pointed out that 5% of several million cells was still quite a lot of cancerous cells! I still have a small lymph node which can be felt in the right armpit and a slightly extended spleen. However he had not received the CT scans nor the result of the bone trephine from the RSCH. The news on the donor front is that the searches of UK databases have been negative and they are now searching international ones. We were clearly disappointed that the UK searches had not been successful but were assured that it is still “early days” on the search for a donor overall. The screening process is lengthy, batching six samples at a time for examination. They will try to find a donor who has had CMV as that would give some CMV immunity in the donated bone marrow. We met the new bone marrow transplant co-ordinator Andre Jansen. I want to find out more about the donor search and resolved afterwards to see if I can get a separate appointment with Andre next time we come up. We are told that CMV could return as a result of further treatment and also during the bone marrow transplant process. Fortunately I had not contracted CMV disease. Although not explained and not asked, I subsequently believe this to be where the CMV has gone on to affect organs in the body, such as the intestine or lungs. Because of the likelihood of a further CMV reactivation, had there been a donor ready in the next six weeks, he said he would have recommended going for a transplant immediately and not giving me any more treatment. As that is not the case, we wants me to resume the programme and push down the CLL levels even further. Now that CMV had appeared on the scene, we are going to have to balance the benefit of further treatment with the risk of reactivation. I no longer need to take the anti-biotic Ciprofloxacin but I should continue having weekly blood tests to monitor CMV and progress with the Campath.
Our intention back in early 2006 - before the ceiling fell in on us (!) - had been to celebrate our 40 years of married bliss with a family dinner, a grand party and a weekend in Florence. In the end it was a relatively quiet celebration, albeit really enjoyed by us. So we asked Steve Devereux to delay the resumption of the treatment programme for a week so that we could have a few days in the north of France to make up for not being able to go to Florence. He is more than pleased to say “yes”. After a little lunch at the Sun and Doves we leave for home not quite sure in our minds if the morning had been as positive for us as it had seemed for Steve Devereux. I suppose that is natural, given the lack of news on the donor search. Once home I spend the evening and a fair bit of Saturday updating family and friends. I don’t want this to sound wrong - and I really enjoy doing it - but it is really very tiring keeping everyone informed!
Week of 23rd to 29th April 2007
Spent this week “recovering” from the rigours of our Sunday celebration. Everywhere in the house there are still little prints of our wedding photograph hanging on red ribbons from hooks and room lights - they are not coming down for some time yet! Had my weekly blood test at the RSCH on the Monday with stable results once again: Wbc: 4.4; Hbn: 12.0; PLT: 181; Neut: 3.7; Lymph: 0.1; and CRP >5. In my pursuit of the Incapacity Allowance claim I saw my GP, Richard Cook, in the afternoon to obtain a sickness note. He was keen to get an update on how things are going for me, including my lengthy stay in hospital. It’s great to have a GP who is interested in how things are after referring you on to consultants. I am feeling fine, no doubt from a combination of not having any treatment, having also now recovered from my chest infection problems and a week of lovely weather!
With some helpful guidance from Anna, we found a rather attractive B & B in Honfleur on the internet, via Alistair Sawday’s website and I was lucky enough to be able to book three nights there - Tuesday to Thursday incl. Tina had to work on the Monday, otherwise we would have made it four nights. So we were up at the crack of dawn on Tuesday and catching an early ferry from Newhaven to Dieppe. Had a superb break in a great B & B in an extremely attractive town and the weather was really good - much as it was in the UK. Naturally we ate very well, although I must confess I did not enjoy the fish as much as I had hoped - and the north French coast tends to go a bundle on fish! I guess it is the effects of all my medication still dulling my taste buds. We also did a good deal of walking; nothing too energetic, but enough to get the sun on our faces. So I came back looking quite healthy, despite not having had any treatment for the past eight weeks! I am saying to people that I feel a bit of a fraud. I am looking well because I am not having treatment and that the moment they try to make me better that’s when I start to look ill (!!) We went for Sunday lunch at Stephen and Sue’s and walked off our meal with the two mile stroll home.
Friday 27th April 2007
The day of my much awaited appointment with Dr. Steve Devereux at KCH. My bloods were once again pretty good - Wbc: 2.6; Hbn: 12.2; PLT: 173; Neut: 1.9; Lymph: 0.29. He was very pleased with both blood and bone marrow results, the latter showing less than 5% CLL remaining - which is apparently a good situation after just five weeks of therapy. Having said that, he pointed out that 5% of several million cells was still quite a lot of cancerous cells! I still have a small lymph node which can be felt in the right armpit and a slightly extended spleen. However he had not received the CT scans nor the result of the bone trephine from the RSCH. The news on the donor front is that the searches of UK databases have been negative and they are now searching international ones. We were clearly disappointed that the UK searches had not been successful but were assured that it is still “early days” on the search for a donor overall. The screening process is lengthy, batching six samples at a time for examination. They will try to find a donor who has had CMV as that would give some CMV immunity in the donated bone marrow. We met the new bone marrow transplant co-ordinator Andre Jansen. I want to find out more about the donor search and resolved afterwards to see if I can get a separate appointment with Andre next time we come up. We are told that CMV could return as a result of further treatment and also during the bone marrow transplant process. Fortunately I had not contracted CMV disease. Although not explained and not asked, I subsequently believe this to be where the CMV has gone on to affect organs in the body, such as the intestine or lungs. Because of the likelihood of a further CMV reactivation, had there been a donor ready in the next six weeks, he said he would have recommended going for a transplant immediately and not giving me any more treatment. As that is not the case, we wants me to resume the programme and push down the CLL levels even further. Now that CMV had appeared on the scene, we are going to have to balance the benefit of further treatment with the risk of reactivation. I no longer need to take the anti-biotic Ciprofloxacin but I should continue having weekly blood tests to monitor CMV and progress with the Campath.
Our intention back in early 2006 - before the ceiling fell in on us (!) - had been to celebrate our 40 years of married bliss with a family dinner, a grand party and a weekend in Florence. In the end it was a relatively quiet celebration, albeit really enjoyed by us. So we asked Steve Devereux to delay the resumption of the treatment programme for a week so that we could have a few days in the north of France to make up for not being able to go to Florence. He is more than pleased to say “yes”. After a little lunch at the Sun and Doves we leave for home not quite sure in our minds if the morning had been as positive for us as it had seemed for Steve Devereux. I suppose that is natural, given the lack of news on the donor search. Once home I spend the evening and a fair bit of Saturday updating family and friends. I don’t want this to sound wrong - and I really enjoy doing it - but it is really very tiring keeping everyone informed!
Week of 23rd to 29th April 2007
Spent this week “recovering” from the rigours of our Sunday celebration. Everywhere in the house there are still little prints of our wedding photograph hanging on red ribbons from hooks and room lights - they are not coming down for some time yet! Had my weekly blood test at the RSCH on the Monday with stable results once again: Wbc: 4.4; Hbn: 12.0; PLT: 181; Neut: 3.7; Lymph: 0.1; and CRP >5. In my pursuit of the Incapacity Allowance claim I saw my GP, Richard Cook, in the afternoon to obtain a sickness note. He was keen to get an update on how things are going for me, including my lengthy stay in hospital. It’s great to have a GP who is interested in how things are after referring you on to consultants. I am feeling fine, no doubt from a combination of not having any treatment, having also now recovered from my chest infection problems and a week of lovely weather!
Recovery from Hospital and our 40th Anniversary
Week of 16th to 22nd April 2007
I spent this week getting myself back into the swing of home life as opposed to being institutionalised in hospital. Having said that, I had to go back Monday and Thursday for blood tests in Haematology Outpatients. I won’t hear anything about the CMV samples unless something crops up but otherwise my results were excellent: Wbc: 3.9 and 4.4; Hbn: 12.3 and 12.5; PLT: 177 and 206; Neut: 3.3 and 3.6; Lymph: 0.1 and 0.2; and CRP both >5.
Jim took me down to Brighton on Thursday, which was good. We had a pint at the Bull at Ditchling on the way home just to show how much back in the swing I feel. On Wednesday evening we had decided on a short pre-dinner walk but only got as far as Sue and Richard Cattell’s when we were hailed in for a glass of wine. We spent the next hour enjoying a chat, sitting on their terrace with a gorgeous view across to the downs and hearing about their trip to the Galapagos Islands and the Amazon Rain Forest. It doesn’t get much better than that! People are saying that I look well. I don’t think they are just trying to be polite. Perhaps I have caught a bit of this glorious sun we are having.
My medication – both liquid and tablet – is still giving me a nasty taste in the mouth at various times of the day, which doesn’t help when I am supposed to keep up the calorific intake. But at least I am having a break from my treatment and I am not having anti-biotics and anti-virals pumped into me any more! One thing I have not mentioned before is the discolouring of my tongue, which first came to notice while I was in hospital. It has turned a rather nasty black colour, but the black looks more like a fungal growth on the surface of the tongue and I can scrape it off both with a tooth brush and my finger nail. No one has said what is causing it, but I suspect that it might be the Corsodyl mouthwash. I had been supplied with a pink coloured version in RSCH, as opposed to the clear mint flavoured one I had before, when I did not have this happening. Whatever is causing it, it looks awful, but I don’t think it is affecting my tastebuds. Anyway I shall be reverting to the mint version soon as that is what I will get from the chemists. To show willing as an escapee from treatment for a few weeks, I cut the front grass and even went for a short cycle ride to check out how fit I am – or not. I have to confess my legs wobbled a bit when I got off the bike! Anna and co. drove down from Mull on Thursday. The timing has been perfect as Saturday is Anna Swallow’s wedding in London, Sunday is our 40th anniversary and they are off to Athens on Tuesday for their photo assignment – probably four weeks in all including driving there and back.
I have now eventually driven our new car, albeit it took me to Saturday to do it. It is rather good! I have also applied for Incapacity Benefit via a very helpful Jobcentre Plus organisation. I received guidance from my local office, then called the national call centre from where a clerk called me back and we completed the electronic form over the telephone. They will send me the form to sign and return with some items of validation, such as a sick note or letter from my GP. What a good service! As I have been self-employed since last May, I receive no employer’s sick pay, so the £81 per week I think I will get will be very useful. It will be retrospective to 29th January, when I stopped working and it is not means-tested. We have also had good news from Greek Islands Club, the company with which we booked our big celebration holiday in July on Kefalonia. Having pleaded our case to the company boss, particularly the bit about my not having holiday insurance, we are going to be able to rollover our deposit to next year. This is really great as we thought we could well have forfeited the £900 deposit!
We had a lovely day on Sunday celebrating our 40 years - with beautiful weather. We had drinks in the New Inn garden, Anna and Matthew cooked lunch and then we had friends in for champagne and cake about 4pm. Paul Wehrle did a surprise CD of the event. I gave Tina a
ring and she gave me a smart new laptop computer. I am feeling good and have done since coming out of hospital. Although sometimes the tastebuds are a bit funny, I am enjoying beer, wine and food. But then it is six weeks since the end of my last lot of steroids.
I spent this week getting myself back into the swing of home life as opposed to being institutionalised in hospital. Having said that, I had to go back Monday and Thursday for blood tests in Haematology Outpatients. I won’t hear anything about the CMV samples unless something crops up but otherwise my results were excellent: Wbc: 3.9 and 4.4; Hbn: 12.3 and 12.5; PLT: 177 and 206; Neut: 3.3 and 3.6; Lymph: 0.1 and 0.2; and CRP both >5.
Jim took me down to Brighton on Thursday, which was good. We had a pint at the Bull at Ditchling on the way home just to show how much back in the swing I feel. On Wednesday evening we had decided on a short pre-dinner walk but only got as far as Sue and Richard Cattell’s when we were hailed in for a glass of wine. We spent the next hour enjoying a chat, sitting on their terrace with a gorgeous view across to the downs and hearing about their trip to the Galapagos Islands and the Amazon Rain Forest. It doesn’t get much better than that! People are saying that I look well. I don’t think they are just trying to be polite. Perhaps I have caught a bit of this glorious sun we are having.
My medication – both liquid and tablet – is still giving me a nasty taste in the mouth at various times of the day, which doesn’t help when I am supposed to keep up the calorific intake. But at least I am having a break from my treatment and I am not having anti-biotics and anti-virals pumped into me any more! One thing I have not mentioned before is the discolouring of my tongue, which first came to notice while I was in hospital. It has turned a rather nasty black colour, but the black looks more like a fungal growth on the surface of the tongue and I can scrape it off both with a tooth brush and my finger nail. No one has said what is causing it, but I suspect that it might be the Corsodyl mouthwash. I had been supplied with a pink coloured version in RSCH, as opposed to the clear mint flavoured one I had before, when I did not have this happening. Whatever is causing it, it looks awful, but I don’t think it is affecting my tastebuds. Anyway I shall be reverting to the mint version soon as that is what I will get from the chemists. To show willing as an escapee from treatment for a few weeks, I cut the front grass and even went for a short cycle ride to check out how fit I am – or not. I have to confess my legs wobbled a bit when I got off the bike! Anna and co. drove down from Mull on Thursday. The timing has been perfect as Saturday is Anna Swallow’s wedding in London, Sunday is our 40th anniversary and they are off to Athens on Tuesday for their photo assignment – probably four weeks in all including driving there and back.
I have now eventually driven our new car, albeit it took me to Saturday to do it. It is rather good! I have also applied for Incapacity Benefit via a very helpful Jobcentre Plus organisation. I received guidance from my local office, then called the national call centre from where a clerk called me back and we completed the electronic form over the telephone. They will send me the form to sign and return with some items of validation, such as a sick note or letter from my GP. What a good service! As I have been self-employed since last May, I receive no employer’s sick pay, so the £81 per week I think I will get will be very useful. It will be retrospective to 29th January, when I stopped working and it is not means-tested. We have also had good news from Greek Islands Club, the company with which we booked our big celebration holiday in July on Kefalonia. Having pleaded our case to the company boss, particularly the bit about my not having holiday insurance, we are going to be able to rollover our deposit to next year. This is really great as we thought we could well have forfeited the £900 deposit!
We had a lovely day on Sunday celebrating our 40 years - with beautiful weather. We had drinks in the New Inn garden, Anna and Matthew cooked lunch and then we had friends in for champagne and cake about 4pm. Paul Wehrle did a surprise CD of the event. I gave Tina a
ring and she gave me a smart new laptop computer. I am feeling good and have done since coming out of hospital. Although sometimes the tastebuds are a bit funny, I am enjoying beer, wine and food. But then it is six weeks since the end of my last lot of steroids.
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