Update on polycythemia vera

Hi @Ruthiebabe1 , @Willow says it so much better than I could.
I agree it is a strength to ask for help and I found that counselling really helped me, although I realise that it is not for everyone.
Yes, it must be so difficult if you family are not speaking to you, a very isolated place to be, but you now have us as your forum family.
Please do let us know how your phone call on the 15th Oct goes.
I need to write down how I am feeling and all my fears and questions before a phone call otherwise my mind goes blank when the phone rings. That phone call is your opportunity to cover everything you need to.
Don’t forget if you would like to speak to someone at the Blood Cancer UK support line their contact details are above.
We are here to support you so I look forward to hearing more about you.


Hi @Ruthiebabe1. @Willow and @Willow have said all I could say. It’s really sad that you have no family support. That must be difficult for you. I highly recommend talking to a counsellor. Is it something you would consider? X


So sorry to hear about your situation… It hurts more when the people that are expected to take your welfare and care don’t.

I really have to echo what @willow @erica and @Nichola75 have advised in trying to speak to someone independent. Sometimes you just want someone to just listen, sometimes you want them to advise you (support line maybe better for this as often in therapy they get you to figure out a solution which is still helpful)

It’s not right to be going through this alone so rest assured help and support is always here too…

I massively struggled to get my GP and medical team at hospital to sing from the same hymn sheet… it made me feel pointless, helpless confused and a fraud… It was only after speaking to others on the forum and the websites that made me become more proactive and confident to take action in getting things confirmed and on track.

Hopefully in time, your family will come through and be there for you, but in the mean time, be sure to look after yourself and rest assured support is only a message or call away.


If it’s any consolation… And I know everyone is different but when diagnosed with Polycythaemia vera (PV) my blood always show up as abnormal but it’s noted it’s expected …

The best thing to do is make your GP and med team aware if you feel abnormal and keep them posted on any new symptoms.

For a non diagnosed person your levels maybe abnormal but for someone with Polycythaemia vera (PV) it may be still ok (obviously be sure to check)

Take care


Good Morning Willow
Try not to worry too much about taking hydroxycarbamide for a long duration. I have been taking it for 16 years with no adverse effects I am now 76 yrs old. It has varied a little in the dosage sometimes up an extra tablet and sometimes down. I know we are not all the same in response to drugs but I know of others who are keeping well on it so do as advised by your doctor. Hopefully you will have a long and trouble free future once your dosage has been decided. I also have to take a 75mg aspirin daily too. Stay safe and take care. Best wishes Judith