Hi everyone, I was diagnosed with the above about two months ago. I’m struggling with the tiredness and feel I’m letting people in my home life down as I just don’t seem to have the enthusiasm to help with general jobs in the house. I also have monthly venesections and as I have a needle phobia I get physically sick and have a sleepless night the day before they are done.
Is anyone here on medication for ET, as I was going to ask if I can be put on it..
Hi again Rob ET Rob, I was waiting to see if any of the group members were looking in, but me posting will bump up your initial post and hopefully the small number of folks will connect in.
Having been on my rare blood cancer (Cutaneous T-Cell Non Hodgkin’s Lymphoma) for over 22 years now my initial needle phobia was put to bed rather quickly, to the point that if I had three hands I think could put in a cannula myself no problem, especially better than one second year student doctor I had a few years back - blood bath comes to mind.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have a local Maggie's Centre. Our Maggie's (Inverness) and most centres run a monthly Heamatology Support Group and we have a few members with ET etc.... These groups are on zoom at the moment but this opens the support to many more people as we have people log in from 100s of miles away.
Lets see if anyone logs in and replies..... do remember you can look through the existing discussions and hit reply and this will bump up that discussion.
Always around to chat.
