I was a bit embarrassed by my last post as it was long and miserable, and I was tempted to see if it could be taken down again. It was an accurate reflection of how things were then, but I'm happy to report that things are a lot better at the moment so this post might bring things into balance!
When I last wrote, I had problems with an ear that was full of fluid following surgery that hadn't gone so well. The flood waters eventually dispersed and I have had my hearing back for about the last week. I can now play the ukulele, and enjoy it... and I can sometimes hear the telephone when it suits me!
Regarding platelets... these had been produced at an ever increasing rate and every until recently showed an increase, but in the last month or so there has been a gentle decline. I'm still over 1000, but only just. I don't know if it is psychological or physical (probably a mix of both), but this has been been accompanied by an improvement in how I feel generally, and in energy levels. My non-medical mind visualises the platelets being produced on a production line by a rather exploited unskilled group of workers wearing overalls and hair nets. Until recently, the poor things have had to work long hours with few breaks and little pay..., but I do wonder if they have joined a union and their conditions have improved somewhat. Their productivity is not quite so frantic, and they might now have tea breaks, but I'm feeling better so maybe the quality of what they produce has gone up!
My regular GP came back from leave and I was able to catch up with her recently. I was very pleased with how the consultation went in that I felt able to talk very candidly and freely, she gave me a great deal of time (missed her tea break), and was interested and helpful. She has written to the hospital to see if they can transfer me to a different haematologist. She also took on board my anxieties about HU and my preference to give interferon a try first if I have any chance of doing so.
Regards HU. I very, very nearly started (OK I am a coward!), but waited until my blood tests came through, and.... as these showed a decline in platelets I decided to hold off starting the pills. Another factor was that I have just started Blood pressure and cholesterol medication, and also wanted to give time to make sure that I was tolerating these OK, before taking the HU! Currently I am just on aspirin for the ET.
Anyway, that brings things fairly up to date. I wonder if others feel worse when platelets are increasing, and better when they have levelled off? Is this "all in the mind", or does something about the blood chemistry change when platelet production is frantic that affects mood and symptoms?