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 !