Progress??

I am after some answers this week, I have 2 clinic appointments the first with Prof Marks (head of bone marrow transplants) and the second with a consultant from Orthopedics to helpfully sort out leg.

From the first appointment I want to find out when I can head back to work. I already know that I've been progressing well from the blood test results (Although my counts are still half that of a normal person), they will not be able to tell me much more until tests are done next month... I'm someway of been declared free of Leukaemia.

My current situation is that I may feel ok, but I have a weakened immune system for 2 reasons. The first is that I am not generating enough white blood cells to fight infections, the second is that the immune system I have is effectively brand new. This means for example I can get chicken pox again and they can't immunise me for at least a year. Because of this I still can't go into crowded places and have to avoid anywhere with air conditioning. This puts me in a difficult situation of feeling able to do lots of things and been banned from doing most of them. So I'm generally stuck at home looking for things to do.

I spent the last week organising the Dodgeball tournament (www.dodgeballbristol.co.uk). The organisation has gone very well with Constellation (the company I work for) generously sponsoring the tournament, lots of interest in entering, and the website up and running. I'm looking forward to seeing the entries start coming in now.

As the majority of the work for dodgeball has been done, I'm back to looking for things to occupy me during the day. Prof Marks tells me I will not be able to go back to work for another 2 months (and this would be if everything went to plan). This is a bit of a blow. I was hoping rather optimistically that I could get back to normal towards the end of May\June. Other than that my drugs are adjusted and I'm not told anything I did not already know.

The second consultation I have with Orthopedics goes badly. I am told my appointment is at 10:15. I'm still waiting at 2. One of the worse places for me to be is a hospital waiting room and I'm stuck there for 4 1/2 hours. A problem I have with the treatment of my leg is that I have seen so many different people. I am promised by the consultant only he will see me in the future.. then told he is on holiday for 2 weeks. Previous meetings had indicated that I would have an operation to remove remaining dead tissue and then the wound would be sealed up. The consultant disagrees and would rather leave the wound to heal naturally, it has not healed naturally so far so why should it now? I believe the dead tissue is preventing the wound healing and an operation is what is needed. I really need the consultant and Prof Marks to get together. Instead the consultant sends Prof Marks a letter and sends me of to ultrasound to book an appointment. I'm rather fed up with both the problem with my leg and how it has been treated.

While it is clear that I won't be able to return to work until July I am still hopeful that I can do some work from home. After a meeting with work it is agreed I can do this provided doctors approve this. I'll be trying to get this tomorrow. If I can't work from home then I think I may go crazy looking for things to do.

After the meetings I try to get on with things as normal, however the adjustments to my drugs I feel some side effects. This continues over the weekend and when I report on Monday my drugs are adjusted again. The drug that was increased last week is dropped for a few days completely as it turns out I'm overdosing on it. Overall treatment seems to be in confusion, my drugs are up and down, leg is far from sorted. Its very frustrating both in terms of not been able to do what I want out of hospital and in terms of not feeling like I'm making progress in treatment.