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!
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