I have been diagnosed with Myeloproliferative neoplasms (MPN) Polycythaemia vera (PV) and I have been told to live a normal life. I am a painter and decorator which is physical job ladders steps scaffolding etc. will this be possible to continue. Thank you .
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Hi @Paul63 I am sorry to hear that you have been diagnosed with Polycythaemia vera (PV), but welcome to our forum.
I am not a medical person, these are just my thoughts.
If you have been told to live a normal life by a medical person, who knows your medical history and occupation, then I would say go for it
Obviously unless you have any symptoms that would make it unsafe or dangerous for you or others.
I would ask you how you were diagnosed?
Are you going to tell your employers?
Do you have insurance policies you might have to tell?
If you feel you need a 2nd opinion you might ask your GP.
Look after yourself and please do keep posting
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Hi @Paul63 welcome to the club no one wanted to join. I have the same type of cancer as you and I work freelance as a photographer and delivering furniture long distance.
The trick is to learn to listen to your body and know when you need a break or to drink and feed. The way this rare cancer works means one day you will be fine, the next, it really is a case of mind over body and create crash spaces in your week.
This site is full of great info for this cancer such as all of this; Polycythaemia vera (PV) | Blood Cancer UK
and help with explaining things with work:
Blood cancer: money and work | Blood Cancer UK
I am self employed, so things get a bit strange with the finances and legal stuff, but the above is a great starting point for you.
The forum is full of great advice not only for this rare oddball, but on our shared experiences of blood cancer and our over lapping symptoms and living day to day with a blood cancer.
The driving side and lifting furniture is still doable and as long as I rest and pay attention at work to the clumsiness and tiredness, life tends to be ok.
Top tip, normal life is just the life you live, Polycythaemia vera (PV) creates a new normal where you have to be a little more aware.
So are you just on aspirin, blood taking (visit to the sisters of the leeches ward) or any medication?
The support lines from the @BloodCancerUK_Nurses are really useful and and helpful here too.
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Thank you for your reply I am also taking hydroxycarbamide
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Hello @Paul63, welcome to the forum! I’m really sorry to read of your diagnosis. Last year I was also diagnosed with Polycythaemia vera (PV) and have since taken daily hydroxycarbamide. How are you doing with it? Many people with MPNs like Polycythaemia vera (PV) and Essential thrombocythemia (ET) will experience pretty bad fatigue which can affect energy levels and concentration.
Maybe keep an eye out for any extreme tiredness and add more breaks at work if needed. My fatigue was no joke! I went from being comfy doing long hilly hikes to being too fatigued to walk upstairs at home. Thankfully it passed once my body got used to the chemotherapy.
While you’ve been told to live a normal life, keep note of changes you notice so you can tell your haematologist. Dosage of hydroxyurea and other medicines can be changed to fit your energy levels and if they’re not helping to lower your platelets and other blood cell numbers.
I’d say occasional fatigue is now the worst side effect of Polycythaemia vera (PV) for me, and it can come on pretty randomly. Often stress can bring it on. Someone on the forum wisely said to rest and resume activities when the fatigue takes over, and it works for me! Recently my haematologist told me I’m more likely to die with Polycythaemia vera (PV) than from it and live a normal length of life. Hopefully that’s reassuring for you too.
I was also warned to be more careful in the sun as Polycythaemia vera (PV) makes us more prone to skin cancers. So if you don’t already, now is the time to start using mineral-based sun lotions with a high SPF! And hats.
Do keep posting @Paul63 and let us know how you get on.
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@Paul63 how did you find out you had Polycythaemia vera (PV)? I know some have no symptoms and are found out by accident whilst others can be full of symptoms and take years to have the thing diagnosed.
Were you put on the hydroxycarbamide straight away or have a period of blood taking and aspirin?
This info gives you, others on here and the nurses here a chance to see how Polycythaemia vera (PV) is handled across the UK
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Hi thanks for your reply and making me feel welcome. I visited my GP with a bad big toe he thought it was down to my arthritis, he took a blood sample to rule out any fungal issues. He came back to me and told me I had an extremely high red blood count I was then referred to the haematologist more blood tests and four weekly visits to take a pint of blood each week. I was advised I have Myeloproliferative neoplasms (MPN) Polycythaemia vera (PV) jak2. I now take an an aspirin and hydroxycarbamide everyday. I am self employed.
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Hi @Paul63 I realise if you are self employed if you do not work then you are not earning money.
If you have talked to your haematologist and they have said to live a normal life.
If you have no symptoms on the medications, why not work.
If you have personal liability insurance or any insurance that asks about a medical history you might have to notify them (they might put up their premium)
Have you ever felt dizzy or unsafe on ladders or heights?
If your toe has healed have you returned to work, if not why.
You are obviously wary, so perhaps get a 2nd opinion from your GP
These are just my thoughts, in no way am I telling you what you should or should not do, the decision is completely yours.
Take care of yourself
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Paul63 I feel the decision to work or not is a very personal one. We all react to medications differently. Wishing you well , look after yourself. Liz59
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Hi Paul
Welcome, I have a different diagnosis but have had to make quite a few changes to my work life .I still do my job but have a different remit and adjustment has been made so I can avoid as much face to face work as I can to avoid infection etc( I work in health)
I appreciate that this isn’t easy to do in your job at all but its important as people have said to listen to your body and rest when you can.I found I had to try to do my job for a short period so I knew what I could and couldn’t manage
Take care of yourself and let us know how you get on
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@Paul63 will not ask which colour or brand of paint tin you kicked to set this journey off 
Sounds like your uric acid had built up in your toe, gout can be an issue in Polycythaemia vera (PV) because how body is working overtime to manage all that extra blood bits we generate.
Self employment is can be a benefit when you need to talk to the boss about time off or down time, just the world says we don’t fit in to the nice boxes they wish us to tick.
The line “Live a normal life” trotted out by some in the medical profession, just shows how little they actually understand this cancer and it’s effects on our day to day living.
We are balancing a rare genetic genie with the demands of every day life, but without a human resources department.
I work on the basis of trying to get as much done, then rest, but the more arty side of work, such as taking the shots, editing, even the driving is a lot easier than the more right sided focused stuff. Learning to balance these two sides is always an ongoing lesson.
Was it just your big toe or had you been having other symptoms before getting the Polycythaemia vera (PV) members badge?
Mine took a serious car crash and a pass the parcel from one hospital department to another hospitals regarding my blood count. To quote the doc, “The crash saved your life as you were a walking heart attack waiting to happen and why did **%^^% they let you out of hospital after those readings?”
Late start today for another long week, so resting and doing small bites of the yuk side of life stuff. If you have someone who is good at paperwork and forms who can help you, beg plead and offer the best chocolate biscuits you can afford, the weight off your Polycythaemia vera (PV) will be well worth it.
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Good point about gout. With Polycythaemia vera (PV) we’re prone to gout developing, but its excess uric acid levels can be tested for by your doctor.
Something I noticed after starting hydroxyurea, based totally on my non-medical observations, was that old internal injuries started playing up again, like a sprained elbow and finger. It may be the case that some historic injuries flare up for you too.
I try to remind myself to keep note of any changes in physical symptoms, even stuff you’re used from years gone by, as it can be interesting for our haematologists. Although they’re mainly treating our blood cancers, they are also treating the side effects of it and the medicines prescribed and how our bodies respond.
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