Worried mum and new member. My 31 yr old daughter has Polycythaemia Vera and I'm struggling to support her emotionally. Does anyone else have PV?

I'm a mum to my 31 yr old daughter who was diagnosed with Polycythaemia Vera before lockdown. 
she's already had her spleen removed  in 2022 as it was classed as a super massive spleen and caused so much discomfort. 
now she's struggling with more severe abdominal pain. 
we are still awaiting results of a CT scan. I constantly fear the worst. I struggle to support her emotionally. I feel weak and helpless. A failure. I need her to be pain free so she can live her life in the best way. 
any PV sufferers out there? 
any one who can just relate please.  

  • Hi Nikkichez and welcome to the forum.

    I'm sorry to hear your daughter has been living with polycythaemia vera for quite some time and that she's now struggling with severe abdominal pain.

    Waiting for the results of her CT scan must be very difficult but I hope this guide we have created on how to cope with waiting for news will help to steady your nerves until you know more.

    So many of our members know how difficult it can be to support a loved one with cancer, so you are not alone, and hopefully you will receive some support and advice from them soon.

    If it would help to talk to someone about all of this, you can give our team of cancer nurses a call on 0808 800 4040. Their phones lines are usually open Monday - Friday between 9a.m - 5p.m but they will be closed between the 24th - 26th December and New Year's Day.

    If you feel up to it, do let us know the outcome of the CT scan. We'll have our fingers crossed for good news and that the pain she's experiencing isn't a sign of anything sinister.

    Kind regards,

    Steph, Cancer Chat Moderator