Polycthemia Vera

Hi I found out on the 4th April 2022 (8Days before my wedding) that I have PV. The wedding kept me busy but now that’s over I’m at a loss. I’ve been advised to quit my job by my consultant so I feel lost and I feel like my life is kind of over on it it isn’t but it feels like I’ve been told this devastating diagnosis and left to get on with it the regular venesections is really getting to me now ! I’m not sleeping good I’m worried sick about having to slow down as 2 out of the 3 of my children have special needs… I’m just really lost am I supposed to feel like this?

  • Hi MrsW86, so sorry to hear of your diagnosis of PV, to be told you have a blood cancer is quite a shock and it's totally understandable to feel the way you do. 

    I also have a blood cancer, MDS, but my problem is too few red cells and lately, low on neutrophils too which is quite the opposite of PV. I also have haemachromatosis and for that, I was having venesections weekly until I collapsed one night as my body wasn't replacing the red cells because unknowingly I had MDS. That was also a very big shock as you can well imagine and I didn't know which way to turn.

    I was also advised to stop working which wasn't so easy because I was self employed and I had a guy working for me who had 3 young girls. However 4 months later I began to get sciatic pain and 4 months after that the pain was so bad that I was given a wheelchair by my surgery which helped massively. It's all in my profile if you want to read it by clicking on my username. I noticed you haven't filled in your profile yet, 

    I really feel for you Mrs W86, having 2 of 3 children having special needs. Maybe if you stopped working you'd have more time to focus on them? I can't of course answer that, I don't know your situation financially.

    I hope you'll be chatting with us for years to come.

    Take care and stay safe Mrs W86 

    Tvman x

    Love life and family.
  • Thanks for your reply I’m sorry to read about what your going through. I have updated my profile with as much as I can I just feel so empty and at a loss of my next steps.

  • , I'm sure you sre running on empty. Just keep calm and some things will get a bit easier Slight smile

    Take care and stay safe Mrs W86

    Tvman x

    Love life and family.