Change of condition

Hi not been on here for awhile and was just seeking advise.I was diagnosed in 2019 with ET andJAK 2 but last year after my yearly consultation I was changed to Polycaemia Vera JAK2 my treatment has stayed the same and ive only had the 1 Venesection with my bloods being stable for last 3 years.With a new appointment coming up shortly is there anything i should be asking.Consultants are never very chatty and it seems like a waste of time going as they just look at notes then ask if im ok for meds


Hi @Elamy great to hear from you again.
I used to be the person that walked into a medical office and the medical person said ‘how are you?’ I would say ‘fine’, and it would be like a revolving door and I was outside the room before I knew it.
I find if I sit in a medical room with a consultant and I have my list of questions prominently in front of me and I do not get up until I feel satisfied I have all the answers I want, the piece of paper sort of gives me confidence.
Have you got any questions you would like answers to:
Perhaps something around symptoms
Perhaps something around diagnosis
Perhaps something around side affects
Perhaps something around medications, treatments, monitoring etc.
Perhaps something about vaccines
Perhaps something around socialising, holidays etc.
Perhaps something around prognosis
There is a lot of information on the Blood Cancer UK website and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please let us know how you get on and take care


Hi Erica thanks for the reply your absolutely right i do go in and say I’m fine this time i will have questions i might give the phone line a call as well thanks once again


I’m always fine at a consultant app because at the time I am ! only he doesn’t see me on the bad days

What I have learnt from recent concern meetings is
Consultants only deal with "factual information"and their letters are “factually accurate”

As Erica has said
Make a list of your questions


Hi @Elamy,
Lovely to hear from you. As others have already highlighted- feeling how you are about upcoming appointments is really normal and completely understandable. I think honest questions are always a good one.
Yes you may be stable and nothing needs to change but you may also have some niggling doubts or worries about physical changes and or symptoms etc.
Please never worry or overthink what you are asking- there is no such thing as a silly question because you need to hear certain things & be reassured. Equally if you feel that no questions are needed- that is also okay.

We also appreciate that as your condition has moved from one to another you are likely to feel like your learning everything all over again.

It’s likely you are aware of our information but sometimes people find our booklets helpful to browse through as they often can help bring questions to the forefront prior to your appointment. You can order one or download our Polycythaemia vera (PV) one here- Myeloproliferative neoplasms (MPN) booklet | Blood Cancer UK Shop.

Also remember that if you wish to talk things through before or after your appointment, we are here for you - 0808 2080 888.

Take Care, Lauran