Hi all, I was initially diagnosed with Essential thrombocythemia (ET) in March and after further tests my diagnosis is now Polycythaemia vera (PV) with Jak2.
I was initially devastated as thought my symptoms were menopause related, but something niggled me to go to a hematologist and It was lucky I did, my high red cell counts and high platelets were never pulled up as a concern by my GP over 8 years.
I am having monthly venesections and taking low dose aspirin daily. I just feel really deflated this month as Ive been staying positive and living my life as normal, the only reminder being my monthly visits and feeling exhausted for three days after each blood pull. I just think the reality has hit me hard this week. I feel anxious and sad really. My family and friends have been wonderful but after being transparent about my new normal, I feel scared and isolated.Just wanted to share.
Dear @CVM - a huge welcome to our forum. I’m so happy that you found us. It’s a wonderful place to share how you are feeling and connect with others going through similar experiences 
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I have a different blood cancer but let me reassure you that you are not alone in what you describe. A diagnosis is really tough. It’s a lot to take on both physically and psychologically. It’s great that you have a supportive network of friends and family around you, but don’t feel you have to be positive all the time. Different emotions will hit as you process your new situation and adapt. Give yourself time and space. It’s ok to feel sad, anxious and scared - it’s a perfectly understandable response. Just know we are here, so keep sharing and really take care.
Maggie
Hello there @CVM, welcome to the forum. I’m so sorry to read of your diagnosis and how isolating it can feel. Isn’t it rubbish?!
Sadly I can empathise as I was diagnosed with Polycythaemia vera (PV) in 2023, but I can say that joining the forum has helped me feel far less alone with this strange rare blood disorder. Maybe it will for you too. Like dear @MaggieLT says, you are not alone with that diagnosis or how you’re tolerating it, and I hope it comes to feel easier.
When I first joined I found the Blood Cancer UK information about Polycythaemia vera (PV) really helpful so I’ll share it here for you: Polycythaemia vera (PV) | Blood Cancer UK
As you likely know, Polycythaemia vera (PV) is part of a family of blood cancers called Myeloproliferative neoplasms (MPN) which have similar and overlapping symptoms, treatments, and side effects, so here’s the BCUK information in case you’d like to read more: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
If I may be so bold, perhaps feeling the full weight of this diagnosis is hitting you now as treatment is becoming routine—maybe that feeling of being on high alert has faded enough for space to think about other aspects of living with Polycythaemia vera (PV)?
I experienced something akin to grief after my diagnosis—fury at the Polycythaemia vera (PV), terrible sadness at having a chronic blood disorder, and the anxiety I already tolerated went wild. Feeling a little more acceptance now 2 years on, and maybe you will too.
Don’t know if it’s of interest but I read early on after diagnosis that keeping active and doing slow sorts of exercise like yoga, tai chi or Pilates can really help. Being in the moment can help thwart that sense of future dread that can come with anxiety, and it’s a great way to boost energy.
I’ve found hiking and even walking around town helpful but especially being in nature is great for keeping my blood moving, and the exercise feels good too! Maybe you have favourite physical activities, so do more of that I’d say.
And you know, of course being diagnosed with the big C is a big deal! A rare, chronic one like Polycythaemia vera (PV) is hard to tolerate as no one has heard of it and we are sort of invisibly ill. We are also fortunate to have many treatments available should one or the other not work for us.
I felt like a fraud at first. If we didn’t feel some difficult stuff about a Polycythaemia vera (PV) diagnosis then that would perhaps be rarer still, right?!
I wanted to end with some reassurance from my lovely haematologist who reminds me that we’re much more likely to pass away in old age with Polycythaemia vera (PV) than from it. It really can be lived with pretty normally, hard as it seems.
Anyway, enough from me. Do please let us know how you get on @CVM, I’m really glad you found us.
Hi CVM, welcome and things will get better. I see Duncan has given some sound advice as always. Remember it’s normal to be upset and confused when you have received the news you have. I was diagnosed with Polycythaemia vera (PV) around this time last year my treatment is starting to work really well.
I was a keen cyclist and hiker and all that stopped when I felt ill before my diagnosis, but now I’m feeling better and I can shower again ( it’s a pruritis thing, you may not have it so don’t worry), I’m back on my bike and can now walk 6/7 miles on the flat without any problems. I don’t expect to get back to where I was but I already feel I’m as fit or fitter than most people my age.
Keeping healthy and fit helps you should you get an infection and for me, gives me the confidence to go out and enjoy life.
You will get there and there will be setbacks ( I felt like death warmed up for much of March due to a mild virus, but know I feel stronger than ever) but with the support of friends and family ( and your new friend and supporters on here) you will cope and enjoy your life.
I have my next blood test on Monday and untill I see my consultant a week later I will be nervous and tetchy even though I know all is probably well. But that is normal too.
Look at the old threads on here and you’ll find lots of good advice and realise you are not alone or mad, and that other people feel the same as you
Take care and best wishes
Pedro
Duncan, Thanks so much for your lovely words and reply. I am remaining active and will be taking up yoga again.Your support is greatly appreciated x
Thank you for reaching out Pedro, it means a lot. I have been enjoying life but understandably it all just hit! I am so glad I decided to add myself to this forum, it is comforting to know you’re not alone. x
Thank you for your lovely words Maggie. As Duncan quite rightly said, albeit luckily, we are sort of invisibly ill and that really resonated. Much gratitude for your support x
Hi @CVM
Thanks for posting
I too have Polycythaemia vera (PV) and like you always feel a bit exhausted for a few days after a venesection. It’s perfectly normal to do and letting others close to you that is how you feel and not to expect much beyond what you are able to to is something most will understand.
I think Polycythaemia vera (PV) as a blood cancer is something different to people’s perception on cancer. It is a cancer that at this time is incurable but is very much manageable with treatment (which takes many forms). I was diagnosed in my mid 30s and during Covid so because of that I was able to take the news and adjusting slowly to a point where the world had stopped and only started turning once I had got my head around the condition and have the right support around me.
Treatment is different for us all, I think I’ve done them all and now on the right one - that journey certainly had some ups and downs but with little adjustments I’ve been able to continue working and appear well for no one to notice I’ve got cancer without telling them.
Of course it’s best to speak to your medical team as sometimes feeling low, anxious, not with it could be based on lots of things and it maybe an easy fix.
A lot of people with Polycythaemia vera (PV) have gone on to continue with life as it was before and it’s ok to feel like that too and well as feeling rubbish. Its peaks and troughs - some you control some you don’t.
It’s perfectly normal to have lots of venesections in the early stages and then be on nothing as your haematologist will start/delay treatment based on lots of things. I thought and still do that it sounds nuts to have cancer and not be on some kind treatment but it is.
I’m glad you have found the forum as it was a great place to get support, vent, sound off and share. It really does help.
The people behind the support line are awesome as too us here and are happy to listen and/or share our experiences and answer any questions you may have
You’re most welcome @CVM. Lovely to see dear @Pedro and @Rammie18 have offered such great welcoming tips. We Polycythaemia vera (PV) survivors are few and far between but there’s a lovely bunch of us here, including you now.
I love that you’re thinking of doing yoga! I do mine in front of the telly to save public embarrassment. Looking forward to a hike up in the woods later though to see how our new dog takes to it!
Do have a look around the forum for threads that interest you @CVM like @Pedro suggested, there’s lots of information dotted about based on our lived experiences. Lots of folks living well with Myeloproliferative neoplasms (MPN) who give me confidence I can too.
Thank you for your lovely reply, which I’ve only just seen. Much appreciated. I think I “thought” I was handling it all so well and it was only in the last few weeks I just felt I retreated, normally energetic, life and soul etc had no interest in seeing friends, making plans etc and realised it had hit me. So joining the forum at that time was a gut instinct, and I am so glad I did. Thanks for the support x
You’re going through a lot, but it’s important to find an escape, whether that’s finding time that’s just yours or being around people that have no idea what you’re going through.. it’s perfectly fine to feel healthy and be “normal”. This condition shouldn’t stop you from being happy or carrying on with things you enjoy
Hello!
Id received my diagnosis in 2023, and started treatment with interferon in 2024, I was totally disperate and had so dark mood, but luckily this forum Ive got a great support and had changed my attitude. Of course sometimes have bad mood, feeling sill, without energy, sometimes headaches, but I try to keep my head up, have a big support from my husband, I like to do my favorite things like dancing at home, diner in my garden with my family, watching movies , walking with some friends etc, I see more good things around me. Be patient with yourself and try to accept the situation, changing the attitude.
Thank you for your message. Dancing is my utopia too and we’ve done plenty! so couldn’t agree with you more. This week is a better week so I am happy I joined this lovely, supportive forum. Happy Monday to all xxx