[Chirley]

The last week or two have gone very slowly. I have been waiting for my next appointment/transfusion so I could discuss and perhaps start on the Revlimid. I really wanted to reduce or stop the blood transfusions.

Well, my appointment was this morning. I turned up and was told that my doctor is in Germany on a conference followed by his holidays and that this other haematologist I had never met was covering for him. This new haematologist acted as if I should be grateful that he was willing to spend 60 seconds talking to me. He reduced my transfusion from 3 units to 2 units and instead of 3 weeks he reduced the time to 2 weeks. He told me that he would have me attend weekly, if I was his patient. I have to take a day off work without pay, every time I have a transfusion so I lose about $500 every three weeks but until my doctor comes back, I'll be losing $500 every 2 weeks. As i'm building a house at the moment, I need every cent I can get. It's very frustrating.

I also asked if I could get the results of the bone marrow cytogenetics so I could start the Revlimid. He told me that he couldn't give me results like that and it is up to my regular doctor to give me results and discuss treatment changes and medications.

I keep telling myself that patients need patience.

I really appreciate how good my regular haematolgist is at communicating with me. (how dare he go on holiday without my permission). Really, I hope he has a good holiday, he's been looking very tired lately.

Thanks for the answers everyone. I found a betadine mouth wash that works for me and the white lumps are gone again. I suppose with my WCC hovering around 1.0, I should expect things like that to happen.

Chirley