I hate this Polycythaemia vera (PV) don’t really want to be here anymore
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Oh @Jimbev it sounds a miserable place that you are in.
Welcome to our support forum though and thank you for having the great courage to post so honestly and reach out to us.
Would you like to tell us a bit more about what has been going on for you?
Really look after and be very kind to yourself.
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Hello @Jimbev. Welcome to this forum. I hope you find it a supportive place and somewhere where you can share how it really is for you. Thank you for your honesty about how you are feeling. You have already taken a big step in posting here so that shows courage. I am so sorry about all you are coping with. Do you have any family or friends who could support you at this time? Are you able to share honestly with them too? I wouldn’t want you to feel isolated on your own. I have a different blood cancer to you but I understand the impact it has and how difficult it can be so you are not alone on this forum. We may have different blood cancers but we often experience the same fears, frustrations, doubts and emotions. Don’t forget the Samaritans are available on phone number 116 123 if you need someone to speak to. Warm wishes Willow x
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On my own, constant pain in left side of body, thingking is this getting worse is it my spleen, nit able to sleep.
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Oh, @Jimbev you are never alone now that you are one of our forum family.
I know it is a bank holiday weekend but perhaps don’t forget your haematology ward at your hospital is always there. There is also 111 or A&E
I do not think that there is anything worse than not knowing and not sleeping, although come to think of it my imagination often is.
If you can wait till Tuesday then you might consider contacting your specialist nurse (if you have one) medical team or GP and perhaps really tell them the severity of your constant pain.
I expect many of us have felt that we have hated the fact that we have a blood cancer too.
We are also here for you on our forum, be ever so kind to yourself and I look forward to hearing more about you.
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Hi @Jimbev. I can see @Erica and @Willow have given great advice.
I know myself how that lack of sleep makes everything so much harder to deal with.
I wonder if there are any support groups in your area so you can make connections? Also, have you spoken to your GP about difficulties sleeping.
I understand you are feeling low. Sometimes things can get on top of us. I hope posting and sharing on here helps a little.
Please keep us updated on how you are doing. We are always here to lend an ear.
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Hi Jimbev, I hope you are feeling better. I can’t begin to understand what you are going throat the moment, but I can tell you from my personal experience and what I’ve read, the Polycythaemia vera (PV) will improve.
I joined this club last year but it has taken a while to get my meds right, if I’m honest I still don’t think they’re completely correct, the point is it takes time for some of us.
To be honest I’ve not felt like you do at the moment but there was a time with the side pain and the horrendous itching I used to get that I have thought that if I ever get to sleep it wouldn’t be the worst thing to happen if I didn’t wake up.
Thankfully I always woke up and I hope you will feel that way soon. It dies get better it just doesn’t always feel like it will though.
I still get anxious when I have my bloods done and when I’m waiting for the results. I don’t know when/if that feeling ever goes away.
But you are not alone, we will help support you were possible, and you can live a life with Polycythaemia vera (PV) even if it doesn’t always feel that way.
Take care
Pedro
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Hi @Jimbev,
I am sorry to hear how you are feeling and how difficult things are for you.
I have sent you a private message but if you would like to talk things through in more detail, our nursing support line is open until 1pm today on 0808 2080 888.
Take care
Fiona (support services nurse)
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Hi @Jimbev
You have taken the brave step of reaching out here with your feeling
Can you contact your GP and tell them you are struggling and you need some help.
Palliative care these days deal with pain management helping us to live better
Maybe a referral could help you too.
Take up @Fiona_BloodCancerUK offer to give the nursing support line a ring
Just having someone to listen to you can help
It’s ok to not be ok too
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