Hi all. I’m a 38year old female diagnosed on 26th Nov with polycythemia Vera. Currently feeling like my world is crumbling around me and life won’t be the same again. I’m aware that this type of blood cancer is manageable but I’m really struggling to get my head round all of this.
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Oh @Zoescott1 I really feel for you, I remember similar feelings so well myself.
I have another blood cancer and I was diagnosed at this time of year.
I came straight home and wrote my will and funeral music and that was 20 yrs ago.
I thought that I had my life and career mapped out in front of me and I would see my son married and I would have grandchildren, then suddenly …
I think my feeling of having my life and career mapped out in front of me before my diagnosis and then suddenly … might be connected to your feeling of your world crumbling around you.
I think I was in shock for a long time and so perhaps just give yourself time to come to terms with it all, your world has been turned upside down.
I felt very lonely and isolated at that time and in a weird bubble with people preparing for the festive season around me.
I have made some adaptions to my lifestyle and work life because I get fatigue and symptoms but I can honestly say my 70th birthday was my best ever.
I have never learnt medical speak, it is like a foreign language to me, I just ask medical people to put it into plain English for me.
My diagnosis has given me an opportunity to work out what I want out of life and with whom. I reckon that the best things in life are free like good family and friends, nature, music etc.
The Blood Cancer UK support line is there for you on 0808 2080 888 and you are now part of our forum family.
Be ever so kind to yourself and look after yourself and I really look forward to hearing more about you.
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Dear @Zoescott1
Welcome to the forum, although I am sorry for the reasons that you find yourself here! I think you will find this a really supportive place though!
I don’t think I can add to much to @Erica’s wonderful reply but I just wanted to say we are here for you and if you want to talk things through please do call us - 0808 2080 888.
This is all so new to you and your feelings are so justified, you have had huge news and it will take time to process everything. In time you will feel back in control.
Have you got good support around you?
Please be really kind to yourself, take one step at a time.
Take care,
Heidi (Support Services Nurse)
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Hello @Zoescott1, welcome to the forum, fellow Polycythaemia vera (PV) survivor. I’m sorry you had reason to find us here but I’m very glad you did.
Just wanted to say from where I am a year after diagnosis that I really empathise with how you’re feeling right now, and to reassure you that you’re not alone with Polycythaemia vera (PV) and that there is life beyond this.
For now though I’d say just feel it all. Let yourself feel how rubbish it is to have been diagnosed with this chronic blood disorder. I imagine it’s making you wonder what lies ahead, what can you achieve in life if you’ve got this disorder lurking away. All of that is to be expected with such a life-changing diagnosis.
Hopefully you have loved ones you can share all this with. Perhaps it doesn’t feel quite real yet, or you’re not ready to talk about it with people you know, so the lovely Blood Cancer UK nurses are right there if you wanted to call, like @Erica and @Heidi-J-BloodCancerUK say.
When you’re ready have a look at the BCUK information about Polycythaemia vera (PV), I think it’s really well researched: Polycythaemia vera (PV) | Blood Cancer UK
Perhaps you’d like to see how others on the forum live with Polycythaemia vera (PV) and other closely related Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET), so I’d say when you’ve got the headspace look around the forum using search terms like Polycythaemia vera (PV) and you’ll find many of us sharing tips and experiences.
Do keep us posted about how you get on @Zoescott1, thinking of you!
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I’ve just been diagnosed and I can understand exactly how your feeling I had to pay for a private jak 2 mutation test as my go refused and mine come back positive talking to close family can help and also this forum which is very welcoming also health unlocked look for the Myeloproliferative neoplasms (MPN) voice section I’m still new to all this but u can always chat to me if you want
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Hi Zoe
I was diagnosed with Essential thrombocythemia (ET) which is another blood condition in the same group as yours. I say a condition as that’s what it is.
I was like you when first diagnosed, didn’t sleep and was just panicking all the time. Then in one of my many appointments one consultant said not to think of it as the dreaded C word! As he put it, it’s a condition! A liveable condition!
This is a fab forum, ok one no one really wants to be part off but we’re all in the same boat and everyone is very friendly and helpful.
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Hey there @djleighp, just wondering if your GP is now aware of your diagnosis with the JAK2 gene mutation and Polycythaemia vera (PV)? Might be worth making sure it’s in your NHS records as other healthcare can be affected by Polycythaemia vera (PV), like some vaccinations.
Reading the experiences of others around the forum being tested for Myeloproliferative neoplasms (MPN), it seems tricky in some UK regions to be checked for JAK2. My dad had issues getting tested as he also had a resistant GP. He was pleasantly assertive (©️ @Erica!) until he was sent for testing, then waited months for the result, which was thankfully negative. We thought his results would come back quickly as he was tested near a university hospital in Cardiff, but no.
If they don’t already, it might be worth making sure your GP knows about the Polycythaemia vera (PV) @djleighp so they can help join up all your healthcare and treatments considering you went private for a JAK2 test.
Sounds like your doctor went to the same school of thought as my first haematologist @Happy2019 as he told me Polycythaemia vera (PV) was not a blood cancer and that hydroxyurea was not chemotherapy. I gave my Polycythaemia vera (PV) a silly nickname so I don’t have to keep saying the C word and changed my haematologist to one who has more modern understanding!
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Hi!
I’m sorry that you had to go private, your gp should have listened to you.
How are you feeling?
I have an appointment on Wednesday with my consultant to discuss bone marrow biopsy results. Iv had 3 venesections so far and they are working well at getting my Heamocrit down. Still finding things very overwhelming!
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@Zoescott1 try not to worry yourself as me like you are in the early stages of diagnosis u can reach out to me any time I’m no medical expert but always good to have someone to chat about this my family mean well but they say don’t worry about it what’s making me paranoid is had ultrasound and they said I have enlarged spleen so doctor google says it’s a sign of disease’s progression so I stopped reading as it’s quite common in Polycythaemia vera (PV) or MF so as you can imagine I was thinking the worse case senarico how ever you spell it lol my saying is what will be will be no point stressing and make yourself even worse with stress
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@djleighp - I’m sorry your ultrasound showed an enlarged spleen. Just wanted to say that my understanding of the enlarged spleen is less progression, more a diagnostic tool from which your medical professional can monitor any changes. Best wishes 
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It is very frightening and all consuming to start with. Try to enjoy your favourite things to do it will feel better with the right treatment. I have had Polycythaemia for 20 years and been taking Hydroxy. for 18 years. luckily have got used to a few of the side effects like itchy skin etc. I just take each day at a time I will be 80 in march so had it for a quarter of my life. If I get a few more years I won’t feel Polycythaemia vera (PV) has had much of an effect on my longevity. I have seen many specialists over that time and with a wonderful one at the moment. I do think that if you have got to have something wrong with your health that Polycythaemia vera (PV) isn’t the worst. Hope you all have long and happy lives. It’s not unusual to have long and full lives with Polycythaemia vera (PV).
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Hi @Judith great to hear from you again and thanks so much for your informative, supportive post.
What have you been getting up to?
Really look after yourself
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Zoe like you it’s is disappointing when the medical profession don’t take on board your diagnosis and offer help.
After my first appointment today and am disappointed. I was very positive but left upset.
Like you l will go private. I want to be able to talk to my consultant not treated like a idiot.
Thinking of you 
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Hi, how are you doing?
I’m feeling much more positive. The results of my biopsy were good and iv been a month since my last venesection so all is going in the right way. I have a scan coming up to check my spleen so they seem to be on top of it all x
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Oh no I’m sorry you have been left upset. I’m nearly 2 months since diagnosis and I can promise you it gets easier. I felt like my life was over but that’s very much not the case. Lots of research and understanding. If you’re not happy with your consultant can you ask to change? Thankfully I have a very good consultant who seems to be on top of everything. I’m here if you need to talk. Xx
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This is such heartening good news @Zoescott1! Really pleased to read that you’re feeling more positive and living with Polycythaemia vera (PV) is feeling easier. It’s lovely that you’re sharing this with others here too and offering support. Don’t forget you can always seek your own support too, we’re here for you.
From personal experience it can feel lonely being diagnosed with these rare blood cancers, and tricky to explain to loved ones what we’re living with, but I love what you say about life not being over. There can indeed be a long fruitful life after diagnosis with Polycythaemia vera (PV)! As my kindly haematologist reminds me, we’re more likely to die with Polycythaemia vera (PV) than from it.
I look forward to hearing more of how you get on @Zoescott1, do please keep us posted.
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