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!