Jillian D aged 59
I was diagnosed at an appointment following a minor operation. The follow-up team told me they had written to my GP three times about their concerns for my blood test results. I was referred to a haematologist who diagnosed PV.
To be honest, I was floored when I found out I had PV. I was asked to go to the next room so that the registrar could write a prescription for Hydroxycarbamide. It was the registrar who told me I could only get the prescription from the hospital because it was a chemotherapy drug. I looked at my husband and he looked at me before I said, “You’re telling me I have blood cancer”. His reply will stay in my head forever. Very flippantly, the registrar said, “Oh, yeah, but it’s not as if it’s a tumour or anything”. Not a good way to receive quite upsetting news.
I started on a daily dose of Hydroxycarbamide and had two venesections. Since then the medication has been controlling my condition very well.
Unfortunately, my symptoms have been very severe, especially the bone/joint pain so my condition has limited what I can do. My mobility has also become very poor as a result. Mentally, my condition has left me with depression and anxiety, especially this last two years, having to deal with Covid and the loss of my mum as well. I find peace in painting and craftwork.
When I had breast cancer I never received any support from my family and found the same with my diagnosis of PV. My friends were full of shock and disbelief, especially as I had just got the all clear from breast cancer. Fortunately, they supported me all the way and were so kind while my husband and I had to shield.
