Polycythemia vera

I can’t believe I haven’t seen this forum before now! I was diagnosed with polycythemia vera March '23 after I had a stroke aged 59 in Jan '23. I was working full time, fit and healthy (or so I thought) exercising everyday, healthy diet, vegetarian and then life turned upside down.
I’m back working and exercising but I drive myself mad with ‘am I feeling ok today’ thoughts instead of just getting on with life. I worry about every single little thing of how I am or am not feeling despite being able to do so much. I’m on daily chemo tablets and have telephone consultation every 4 months but I do worry that no one actually sees me to decide if I’m ok. Ooh it’s such a struggle sometimes :blush:


Hi @Nickinackinoo brilliant that you have found us and joined our forum family.
I have to say that it could have been me writing your post
Most of the facts are different but your thoughts and feelings are so alike.
So what I am traying to say often we might have different blood cancers but those thoughts and feelings are so similar.
I was diagnosed with a different blood cancer at 53yrs old whilst being treated by a gynaecologist. My first half century was so fit and healthy too.
20 yrs later and I have heart problems too.
I always say my anxiety, emotions and stress has been on high alert since then.
I attach the Blood Cancer UK details on Polycythaemia vera (PV)
What is polycythaemia vera (PV) | Blood Cancer UK
Perhaps you might say how long it has been since a face to face appointment and please might you have one next time and also mention the feelings you are having.
I hope others will share their experiences
And Ooh it’s such a struggle sometimes, but I feel I am a very lucky girl and it is worth it. Be very kind to yourself and please do keep posting


Thank you for this and the link to the leaflet. I just hope at some point I’ll stop worrying about it all so much. I will definitely mention at my next appointment, how long it is since I had a face to face appointment :blush: I have another telephone appointment coming up in a few weeks and think thats why i’m feeling anxious.
Thank you for listening Erica :sparkling_heart:


@Nickinackinoo I understand where you’re coming from; I haven’t been seen in person for the past few appointments and my next is also a video/telephone appointment. You just want someone to take your stats and actually look at you, particularly as you are taking chemo tablets. :revolving_hearts:


Hey there @Nickinackinoo, what a great username! I’m really sorry to read of your stroke, Polycythaemia vera (PV) diagnosis and ongoing worries. I can empathise!

Last year I was also diagnosed with Polycythaemia vera (PV) and started on daily hydroxyurea, but you so astutely describe what is my main symptom these days—the dratted anxiety that permeates everything post-diagnosis.

Something I wanted to say is that we can be the healthiest people alive and these blood cancers can still strike. Try not to think that you did something wrong or weren’t healthy enough as the gene mutations that trigger our blood disorders are really rather random, according to science! I’m vegan, a keen hiker, and had healthy cholesterol and so on and still developed Polycythaemia vera (PV). It’s not something you’ve done wrong. Blame that pesky little gene mutation!

In fact, from what my haematologist and phlebotomy nurses have said to me, your healthiness should hopefully help your experiences with Polycythaemia vera (PV) be a little easier.

Finding and using this forum will hopefully feel supportive for you during those anxious times in between contact with your specialists. Although it doesn’t sound like you’re having “active monitoring”, I’d say try to take the infrequency of seeing your specialists as a positive sign that your treatments are working and there’s no need for you to be checked more often.

If you wanted any tips for offsetting the understandable anxiety you’re feeling please just say, I can share some breathing exercises that help.

Really glad you found us, @Nickinackinoo! Please keep sharing how you’re getting on.


Hi @Nickinackinoo and a big welcome to the forum.
I can see you have had some great replies from other forum members.
I completely understand how telephone appointments are tough. Is it worth asking if your next appointment can be face to face? I have just been posting about being moved over to patieient initiated follow up appointments which I wasn’t sure about. After a discussion with my consultant we agreed to stick face to face if that’s what I wanted. Maybe worth a conversation?
I’m really glad you have found us. I don’t know where I would be without my forum family.
Please keep posting :blush:


Thank you so much for this reply…you totally get it! Thank heavens I’ve found this forum. Up until now I haven’t met a single soul with my condition and I’ve stopped telling people what I have because they think it’s all doom and gloom when really I’m relatively fit and living a ‘normal’ life.
I will try to think of the lack of appointments as a positive thing. My bloods are being monitored far more now than ever in my life and I should be grateful for that :blush:



Knowing you have blood cancer is a scary thing to hear and say…

I too have Polycythaemia vera (PV) after being diagnosed aged 38 in 2020.

It’s absolutely fine to feel normal and go about your regular activities and also looking and feeling like you don’t have cancer. I spent a time where I felt a bit of a fraud… but that is a common experience with Polycythaemia vera (PV). In the past Polycythaemia vera (PV) was diagnosed later in life or as a result of another issue, so knowing you have it may explain “at times” why you feel the way you do and/or if something separate does happen to see if it maybe down to Polycythaemia vera (PV).

Everyone is unique and has different experiences, so don’t feel bad if yours is not all doom and gloom. Ive several ups and down both physical and mental but I just now put it down to being part of the journey.

I’d definitely stay away from Facebook groups as speaking from experience, it really isn’t helpful…

There really are lots of people with your condition on here, so you’re not alone in this…


You’re more than welcome, @Nickinackinoo. I’m so glad you found the forum, thankfully Polycythaemia vera (PV) is not so rare here as it is in our daily lives. It’s become quite familial for me here and hopefully it will be for you too.

I’d second @Rammie18 suggesting it’s better to steer clear of reading about Polycythaemia vera (PV) online as there’s a lot of outdated nonsense at the end of a quick google search.

Keep posting and let us know how you get on. If you have any questions, no matter how big or small (or optimistic or doomy!), please just ask as someone here is likely to have some experience to share.