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 
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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
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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 I have another telephone appointment coming up in a few weeks and think thats why i’m feeling anxious.
Thank you for listening Erica 
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@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. 
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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.
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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
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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
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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…
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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.
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@Nickinackinoo
Hello! I am new here today and just wanted to say that I wish I hadn’t used my initials after seeing your name! 
I was diagnosed with Polycythemia Vera in 2018. It went like this: “You have cancer. We need to find out more. You’ll have more blood tests and an abdominal scan. Don’t think about it. I’ll see you in 2 weeks.” Wow!! 5 stars for instilling fear! In those 2 weeks I ploughed through past blood test results and research papers from Google Scholar and decided it must be Polycythaemia vera (PV). I’m pleased to say I got it right because it’s a very sleepy type of blood cancer and when I have the odd pint out from my ‘blood suckers’, I get given tea and ginger biscuits!! Not only that but free prescriptions!! And I can take aspirin daily which seems to keep it stable. So, all in all, it’s been a journey but it hasn’t changed anything, bar eating far, far less spinach and drinking far, far less water. Goodness I used to drink so much water!! I felt quite ill before my first venosection that I even called the gas board to check i hadn’t got carbon-monoxide poisoning!!
However, I found this site through Google because I have unusual dizziness and I’ll give the Haemo department a quick call tomorrow to see if I can have a blood test.
I’m delighted to see a Polycythaemia vera (PV) thread. I’m female at currently 49y old so a spring chicken in the Polycythaemia vera (PV) world!! I haven’t met anyone with Polycythaemia vera (PV) but we seem to be a rare breed statistically.
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Hello there @FCB, welcome to the forum! I’m really sorry to read of your diagnosis and current dizziness. You’ll find many folks here living with Polycythaemia vera (PV) like yourself and other related MPNs. I was diagnosed with Polycythaemia vera (PV) last year but was classed as high risk due to a previous clotting event (heart attack) so I take aspirin and hydroxyurea every day.
Really glad to read that your experience of Polycythaemia vera (PV) is “sleepy” ha ha ha I love that description! Mine is more fatiguing, but I put that down to the chemotherapy as I was fortunate to have no symptoms prior to diagnosis.
Anyway, hopefully it goes well with the call to your specialist and that dizziness buzzes off!
Do please keep us posted. Have a look around the forum as you’ll find many of us living with MPNs in various states of fine/fatigued/fuzzy.
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Hi @FCB,
A very warm welcome to our supportive online community. I’m also sorry to read about your diagnosis and how it was communicated, but I’m glad you have found us here.
As Duncan says, please do take a look around. Where possible, we tag posts to make it easier to find information. For example, you can find more threads tagged Polycythaemia vera (PV) here: Latest pv topics - Blood Cancer UK Online Community Forum Or you can use the search bar at the top of the homepage.
We would recommend speaking to your hospital team about the dizziness and any other new symptoms, so hope the call goes well today. In case you’ve not seen it yet and it is of use, here also is our information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
Take good care of yourself.
Kind regards,
Ali (Digital Support Services Officer)
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Hi @FCB a great big welcome to our forum and thanks for your introduction.
I have found that often it does not matter which blood cancer we have we might share similar emotions, thoughts and practicalities.
I certainly remember the ‘5 stars for instilling fear’.
If I cannot dunk a ginger biscuit it would be a trip to the dentist next day.
I was diagnosed at 53yrs old with another blood cancer
Please do keep posting as I look forward to hearing more about you
Look after yourself
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Nickinackinoo Its a very personal thing who you decide to share your diagnosis with. All my family know except for my mum as she is 91 nearly 92 and it would cause her so much worry. Are you getting any face to face appointments ? It feels very impersonal when you don’t, I know I felt like I was just a set of blood results and not a person. But I know when I am stable again it will probably return to phone calls as the haematolgy day ward is always so busy. But I have learned the nurses will always try and find time to talk to you /
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FCB Sometimes I wonder do the doctors hear what they are saying. I also have never met another person with Polycythaemia vera (PV). Hope the dizziness has stopped.
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Thanks @Liz59 very interesting, I have never heard it described as feeling that I was just a set of blood results before but it is so true.
I felt that I went from being just ‘Erica’ to ‘Erica with leukaemia’, for quite a while and that people could see it by just looking at me. I felt that I wanted to pull the leukaemia out of me.
Be very kind to yourself and please do keep posting
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