It is a long time since I wrote on this wonderful site. A friend Judith Smith has asked me to post this for her because she is not computer literate. She is on 400mg Tasigna and has started with severe pain in her hands, arms and soles of the feet. She wonders if this is common and anyone has been in the same position?
My health has been problematical this year but it has not been my CML. In spring I spent two weeks in a barrier room in hospital with C.Diff. I had taken, at home, antibiotics for a chest infection and it gave me C.Diff. Apparently C.Diff 'loves' antibiotics and people with underlying illnesses like CML. Now in future I cannot take antibiotics unless I am seriously ill - and then only Doxcyclin, which is also the only antibiotic CML Tasigna patients can take. C.Diff makes a mess of you and it has taken me six months to get sorted. Now I have been told I need to have my gall bladder removed. So far I haven't found the courage to agree. As for my CML I have been on Glivec since diagnosed in 1999 and still manage to bring up a PCR 0 at present. My darling husband died well over three years ago and I am the sole carer for my elder batchelor son who has severe OCD. I live alone and my son lives alone nearby. My other sons's daughter of 14 years has been in hospital for 16 months with anorexia nervosa. Since last Easter she has been force fed by tubes because she will not still eat or drink.
My PCR has always been sent from Nottingham to HH but recently Nottingham got their own PCR machine and operator and my PCR tests have gone to six monthly instead of three monthly. Although I was told this was because it is only a small risk that my PCR will now go up again, I feel personally that it is to do with financial matters. I am not really happy about it.
I see the annual conference is to be in Nottingham this year and at long last my consultants have got themselves involved in a very worthy cause. Judith, who I mentioned at the beginning of this spiel, has been asked by Nottingham to give the patient talk - she is worried already that she will not pronounce Tasigna correctly!
Recently I was turning out my office papers and found so much relating to the old days of my reliance on this compassionate and informative Cml web site. I will be eternally grateful for the way in which I was helped through those early years of my CML. We actually had some jolly good times together which may seem hard to believe. It was this web site that kept me sane in the early days and it gave me the confidence to become an educated patient and thereby cut down on my stress levels.
Especially to Sandy, David and Elizabeth I send all my love and best wishes. I remember going into churches in Derbyshire and praying for Sandy and Elizabeth when they were both so ill. To anyone else who remembers me I also send my love and best wishes. To those new CMLers who do not know me I also send the same wishes. I think Sandy you will still hopefully see that I am a 'fighting' That is something you and Elizabeth taught me all those years ago.
