Hi All. I've just joined this group having been diagnosed with ET & PV in Jan 2022 (aged 49). As a result I have had 20 venesections in the last 7 months. This has resulted in me now suffering with fatigue and having to take time off work. I last spoke to the haematology team in May and have not been able to get an update since then. I do speak to the nurses who do the venesections and even they struggle to speak to a consultant or registrar. The fatigue is causing me to occasionally feel really low and stressed. I am currently only on aspirin and allopurinol as at my diagnosis consultation I was told its too early for any other medication. I have an appointment with my GP later today as hopefully, they've had contact with haematology. That's me for now. Take care All and I wish you the best. Alex
Hi adw265 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) or but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.
It’s a challenging journey living with a rare blood cancer but let’s hope that you can get your pointy elbows into the system and be able to get that elusive appointment with your consultant to allow you to talk through the concerns you have.
Let's look for the group members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with ET and PV in it so worth checking.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
Hi again Ninaf, as I said I don’t have PV but looking at the link I gave you n my first reply and repeated here > POLYCYTHAEMIA VERA (PV) Fatigue is indeed one of the systems.
Do connect with the others in the group who gave PV but also through MPN VOICE UK
