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.