A Red Letter Day

Friday 10th October 2008

I am posting this entry before trying to catch up the past three weeks for reasons which will be obvious. It is a big “Red Letter” day today with news from the West Sussex Primary Care Trust saying they will fund my Revlimid!!!! As you can imagine Tina and I jumped for joy. I have a huge thank you to send to Colin Ross of Horsham for his determination in taking the PCT to the High Court and winning his case. He opened the door and it is possible I am the first person to walk in after him – so to speak. I shall be discussing next moves with Tim Corbett et al on Monday. It was nice that Tim left a message on our answerphone as well, in case we hadn’t heard. Today is a long session at the Day Unit, so up earlier than usual to get there for 9am. I have a bag of platelets and then a session of Vigam. I am checked over by Dr Jo and mention the discomfort in my left upper chest and shoulder, which I have put down as a legacy of the acute constipation I had on Sunday. I have an ECG test which shows normal. My blood results today are - Wbc: 6.2; Neuts: 0.4; Lymph: 5.7; Hbn: 8.1; PLT: 13; CRP: 48. So my neutrophils are up from 0.1 on Monday – good news! – but I am anaemic again and will have a transfusion of red cells on Monday. My platelet count is still extremely low, but the blood test was taken before today’s transfusion, so the count could go up by Monday. My weight today is 75.6kgs but some of it is fluid on my legs. Now where has that come from? I eventually leave the hospital about 3.30pm and we arrive home to be greeted with the letter from the PCT. I call Matthew and text Anna and lots of family and friends with the good news. Keith drops by on his way home to join our celebration. I have a half glass of wine but later feel rather woozy. Perhaps I shouldn’t be drinking any alcohol at all while I am on Thalidomide! I had better check that out and see if it will also apply to Revlimid. I hope not!!