Diabetes

I have CLL, I have AIHA and now I have steroid induced diabetes and I am fed up. I have been up most of the night having a Pity Party. Believe me, its a waste of time and doesn't make you feel any better to have these crying jags, but its not easy to turn off once it starts.

I saw a world class CLL expert on Wednesday to talk about joining the RFC +/- Lullilimub trial. However, due to the AIHA it is no longer available to me. I am relieved as I felt this to be such strong treatment.

Choices now are RFC if we can get funding for the Rituximab or Campath. I have used both of these treatments before and not really keen to get started again. On Monday I will have a chat with my consultant and decide. The decision has been a while coming, what with holidays, and other things and it will be good to make the decision and stick to it. Then maybe I will relax a little more. I would not like to be turned down for lack of funding, but trust that the 'universe is unfolding as it should'.

AIHA

I have AIHA (auto immune hemolytic anaemia) and it seems my white blood cells (and I have thousands of them) are killing my red cells as soon as they leave the marrow. This has to be got under control before I start any treatment. My doctors tell me that they want to schedule treatment for the first week in January which is only a few weeks away. The problem is which treatment shall I have? I am inclined to try Campath again to hit the high white cell count and then Rituximab but as I use a UK hospital, maybe funding could be a problem.

It is my 61st birthday on Monday and I will be at the hospital! Then again on Wednesday at the Royal Marsden in Surrey. How I do see life and know how to enjoy myself!

I am having steroids to help with the AIHA which meant I spent yesterday in a heap of tissues. Feeling better today thank goodness. Fancy not being able to celebrate your birthday with a small glass of wine........ Maybe I'll just smell it :-)

Today I am feeling a bit low. I am breathless and feel a bit weak. After 9 years of CLL (Chronic Lymphocytic Leukaemia) and 3 different kinds of chemo I have relapsed yet again. There is shock when you are first diagnosed and they tell you there is no cure. Just watch and wait, then your first chemotherapy, (Fludarabine & Cyclophosphamide). You think you will beat this thing. You do all the right kind of things, you eat well, you try to get enough sleep, fresh air, practise meditation. You have a remission and just know you won't be like the others and relapse.

Then after a couple of years you find the leukaemia is coming back again. Not like Acute leukaemia where you get treated straight away, with CLL you have to watch and wait while your blood levels change until you are 'ill enough' to be treated. And so I waited for quite a few months before treatment started again. I was turned down by the hospital for the drug my doctor wanted for me (Rituximab), the hospital wouldn't find the funding. So we tried the same chemotherapy (Fludarabine & Cyclophosphamide), but I only managed two months before got ill with Septacaemia and so the treatment stopped while I was hospitalised.

Four months went by and I started a new treatment. Campath. This treatment is given by injection 3 times a week which sounds easy. However, you have to travel to the hospital to have the injection and stay 2 hours before you are allowed home. All kinds of things keep you at the hospital. The drug has not been sent by the pharmacy, it was left out of the fridge, your blood counts are not high enough to take the treatment so come back tomorrow. And all the time you feel unwell. I ran temperatures every night which were controlled by paracetamol but it was like having flu for 11 weeks. I coughed and coughed my way through it. At 11 weeks treatment was stopped as I got pneumonia.

However, I also got another remission. This lasted for 2 years but early this year the blood tests showed the CLL was back again. Again the drug of choice may not be funded.

I know that treatment won't begin until after Christmas, but I don't know what the treatment will be or if my hospital will fund it. And so I find myself feeling unwell and mentally unable to face a fourth treatment. I am blogging so that I don't have to upset my family. It's a way for me to remain just 'Soapy' and get things off my chest. So thanks for listening.

My first ever blog

Never having had a blog before I am somewhat of a novice. This is my first test message. Is anyone out there I wonder?