Loved one diagnosed with Polycythemia vera

Hi @Badger

Thanks for giving us all an update.

I’ve just surpassed my 2 year anniversary of being diagnosed and though it’s been bumpy at times I feel a lot is about how you manage things physically, mentally and emotionally.

Speaking from my experience it’s a battle between being annoyed that nothing seems to be happening or having tests and playing the waiting game.

Polycythaemia vera (PV) is a weird one, yes it’s rare (especially being diagnosed at an early age) and it’s quite unique to other blood cancers and cancer in general. I think it’s hard to see pass the “cancer” word but I believe initially you do need too to gain an understanding of Polycythaemia vera (PV) and the outlook. There really isn’t much info and I would say it’s best to try and get in touch with others with the condition to gain some knowledge on the frontline of what you expect. I would definitely discourage you from global Facebook groups and try and stick to people in this country as not all have the same health service.

Being told Polycythaemia vera (PV) is not curable but manageable can be taken to be scary and comforting. On my hobby of learning more about Polycythaemia vera (PV) and interacting with people with it to gauge an idea of what the future holds I’ve spoken to many that are coping absolutely fine with it even claiming if they were going to get any cancer this probably the one to get. But everyone’s experience is different and sometimes you want to hear the horror stories so you can prepare for the worst but so far I’m yet to find them and I’m still trying. I think it’s extra scary to be diagnosed young but I think we are in a much more fortunate era where health and treatments are evolving on a daily basis. If somethings not out to keep us going then we need to find something within ourselves to keep going to be available when that medicine or treatment is available.

I’m my experience there are a lot of tests and a lot of waiting and being in limbo. It will take a while for haematologists to decide a course of treatment. It’s based on a lot of factors and the person too… one shoe doesn’t fit all. I’d rather the right decision be made that a rushed one but that’s me and everyone is different.

Everyone I’ve spoken too seems to be on something different but the great thing is they all seem to be fine with it. A danger I’ve found of being diagnosed fairly young is that treatment is really known to be treated short term and again for people past family and post working age. I remember when I was diagnosed that my medicine was baby aspirin and venesections and thinking how is that meant to cure my cancer??! But I’m really thankful of my medical team but I also need to take credit for not panicking and making decisions that’s best for me and me alone. Of course I look at how it effects those around me but ultimately any decision is mine I make sure I’m not pressured and take time to do my own research and weigh the pros and cons. Communication is really important and I mean on everything.

I know you’ve mentioned communication seems to be more telepathic between you and your partner but I would really recommend you both finding individuals to speak to about both sides of the diagnosis and separate from each other. There are going to be things you want to say but he may not need to hear and likewise and having people that are knowledgable but independent is great for the emotional and mental sides. Once that’s in a better side and frame decisions and overcoming the physically issues will be a lot easier for you to work with your medical team. Sometimes once you’ve said what’s on your mind it can come out wrong or be misinterpreted or just be something you need to say without any response to get it off your chest. But once it’s said you can then construct how best to communicate this to the other person if it needs to be said which someone from experience can discuss this with you. Hopefully in time you will be able to open up with each other.

Also know that you can speak to other haemotologists for their opinions… I’ve done so and it wasn’t awkward when see my normal haemotologist.

We at the bcuk are always going to be here for you both and I am forever thankful for this platform to make my personal journey dealing with this less lonely and scary.


I’m sorry to hear the diagnosis. I had a traumatic first bone marrow so since then I have insisted on having someone from the pain team with me and I have gas and air and a lorazepam tablet 30 mins before. I still find them painful but it takes the edge off. I also have paracetamol as soon as I get back in the car to be taken home. Sending you healing wishes x


Thank you. So he did great and got a complete 2nd biopsy. He was given something to take before hand and took his own pain relief for his legs. It still wasn’t pleasant but he did it, that’s all that matters! His next appointment is the 14th which will have been a full month from the biopsy. I’ve been trying to work out what will happen now but I’m at a loss. We’re heading down to Bodmin on Tuesday and he’s staying there with the dog until his next appointment. Some paradise and normality until it gets hardcore. I’ve a feeling he’s going to transfer to Cornwall royal and refuse to come back haha. Hope everyone is well and the universe is on everyone’s side. Sending out love around the forum xx