Hi, I still find it hard to come to terms with it, I was always so fit and well no signs of anything like this in my family then wham a life long cancer to deal with. Most days I just get on with it take the pills and do as much or as little as I can. I hope as time goes on it will be easy to live with as it is with any long term illness. I am only at the start of this journey but good days are becoming more than bad days now so I must be turning a corner. I am not being asked that horrible question are you ok so much I know its ment well but every time it reminds me I have it but what can you say, my stock answers is I am getting there and I know I am. Take care☺
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Hi @BevP! Where to start! At first it was a bit difficult, especially since I had just dealt with an accident I was still recovering from (mainly walking). The weekly treatments tired me out greatly and on top of it I got a nasty cold (could have been covid).
However, one of my doctors advised things like meditation and while initially brushing it off, I decided to give it a go. I started practising mindfulness, and it all has given me a good boost of energy and a new zest of life.
I can’t speak for everyone here, but for me, Polycythaemia vera (PV) got discovered before I had any mayor issues like a stroke or heart attack. My treatment has been going well, so I don’t need to take any medication other than 75mg of aspirin a day. Currently, I am on my second month without a venesection and my next bloodtest is in the beginning of December.
My mother passed away of cancer 4.5 years ago, and it was brutal, compared to that; I got a golden ticket. I can grow old with it, and with a bit of meditation and physical activity I can make this work just fine.
I did get to speak to a Haematologist that had been dealing with Polycythaemia vera (PV) since the 80’s, so I got to ask him a ton of questions. Here are some things he told me that might help some of you:
- The Polycythaemia vera (PV) mutation is determined at conception, so you are born with it. At some point it will become a problem, and thankfully they’re catching this earlier on people. 80’s and 90’s they discovered it more after some serious complications like a stroke, heart attack etc.
- You can eat anything you like, just moderate it, don’t overdo it. Don’t eat too much red meat, don’t drink too much alcohol etc.
- The venesections are to reduce the resources needed to make more red bloodcells, eventually your body will adjust to the lower resources and will be less likely to produce extra red bloodcells. Meaning that you can end up with only one venesection a year.
- For a lot of people the tiredness will fade over time, as your body adjusts to the new situation. There are things you can do to boost your energy, like exercise, or things like Thai Chi and meditation.
I found that a positive and thankful attitude boosts energy levels too. I am pretty much functioning as normal, bar some digestive tract issues.
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Some great perspective there @KevM and food for thought. It sounds like you’re getting to a better place but what an incredibly tough journey it sounds to have been for you. Take care of yourself… As Jon Kabt-Zinn, Mr Mindfulness himself, said “you can’t stop the waves, but you can learn to surf”
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Thank you, 
Work in on it 
.
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Welll I just been diagnosed with Polycythaemia vera (PV) as I’ve had heart attack before I’ll be classed as high risk but there is one thing for sure I won’t be taking hydroxyurea or jjafkai or what ever it is called
I’d rather go on the interferon but let’s see what they say
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Hi @djleighp please do let us know how you get on and be ever so kind to yourself
We are about over the holiday period
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Hi got to have bone marrow biopsy on Monday I’m absolutely flapping it as been told it really hurts also my consultant was really nice very knowledgeable
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Hi @djleighp, I totally understand your distress about your upcoming bone marrow biopsy. I had one in August and I was terrified before the event. The actual procedure, for me, was nowhere near as bad as the anticipation. Yes, it was uncomfortable but breathing deeply really helped. I also read what the procedure involves for myself and found that it was helpful for me.
We all experience procedures differently because our bodies respond differently.
I won’t say ‘you’ll be fine’ but I will send positive thoughts and wish you well xx
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I was told that it would feel like a scratch, but my biopsy got postponed. I also heard it hurt, so I wasn’t quite sure what to think. However, it’s nowhere near breaking a bone.
I know my words don’t add much, but the procedure should be quick, and then you’re done with it.
Best of luck djleighp, I hope the procedure will be quick and be surprisingly less painful than anticipated.
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Hi @djleighp I have responded to your other post on this
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Thanks Erica I’m just a natural worrier and I’m so overwhelmed by everything that is going on
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You are doing fine @djleighp.
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Hello again @djleighp, it’s great you’re asking about the bone marrow biopsy. I see others who’ve experienced BMBs have shared how they felt, so hopefully you feel a bit more ready. There’s also this great Blood Cancer UK information about what to expect from a BMB: Blood cancer tests | Blood Cancer UK
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Hi there had my BMB and all I can say it’s the worst pain I’ve ever experienced the gas and air was great lol but was still painful and I’m in agony now could do with some really strong painkillers as I’m having to use a stick to walk
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Sorry to hear that you found your BMB so painful, just be extra kind to yourself for a few days @djleighp
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Oh no, I’m really sorry to read that @djleighp. I hope you’ve found some painkillers considering how painful the BMB was? I took paracetamol after mine and rested for a day or 2. If it’s still really painful later this week I’d say have it looked at. There’s a slight potential for nerves to be affected by the procedure, or at least I was warned of this prior to my BMB.
One positive out of all this is that you probably won’t need another BMB! Hopefully they got great samples this time and can now analyse what’s going on with your blood cells. There may be an anxious wait ahead for the test results so try to find ways to distract yourself.
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Got some co co codamol 30/500 they did the trick but what’s mad now I’ve got this awful bone pain on me left hip driving me nuts
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Ha I took that after a minor operation years ago and was so out of it that I had to stop!
Hopefully the pain isn’t so bad today @djleighp, but do let your specialists know if it continues.
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djleighp I hope you get some relief from the pain. If it continues maybe seek some medical advice. Best wishes Liz59
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Hi @djleighp I think it is worth getting medical advice, especially as its Friday.
Please do let us know how you get on and take care of yourself
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