Hi,
My partner has just been diagnosed with polycythemia vera and I was wondering if anyone knows of support groups in London, especlally around north Finchley/Barnet.
Thanks very much.
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I’m not from London but joining a support group is a great idea.
I too have Polycythemia Vera, was diagnosed over 4 years ago but would be happy to answer questions and/or share experiences
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Also welcome to the forum!
I remember when I was diagnosed that I was looking for the same and found this forum exactly what I wanted, support, first hand experience and an empathic ear!
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Hi, a warm welcome to the forum. We hope you and your partner are doing okay.
There’s a Barnet Blood Cancer Support Group run by Leukaemia Care - Barnet Blood Cancer Support Group | Leukaemia Care, although you may need to get in touch and find out when the next one may be as it doesn’t have the info on the webpage.
I know it’s a bit further away but there’s also this group in Harrow - Harrow Haematology Support Group | Leukaemia Care
Also, in case it’s of interest, Myeloproliferative neoplasms (MPN) Voice are running this in November. These can often be really good opportunities to meet others affected by similar conditions - MPN Voice Living with MPNs Day – Saturday 18 Nov 2023 – MPN Voice
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A great big welcome @Indiecat to our forum and I agree with everything @Rammie18 says.
@Alice_BloodCancerUK has just pipped me at the post with a far better response than mine would have been.
Please don’t be put off by a more general blood cancer support group as what I find on our forum is that it does not matter what blood cancer we have we often share the same fears, emotions, thoughts, feelings and practicalities. This also applies to family members and carers as well.
I found one of the positive things that came out of lockdown were also virtual meetings as it meant that people that might be geographically apart could get together and share experiences together on line.
I look forward to hearing more about you both and please look after yourselves and keep posting
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Thanks everyone so much for your support and fantastic information.
It’s so nice to receive such a lovely welcome and be a part of such a supportive group. I look forward to getting to know everyone here.
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Wow! Thank you very much for all the great information, Alice! My partner is a forum member of the Myeloproliferative neoplasms (MPN) website but wasn’t aware of the upcoming event in London.
Very helpful, thanks!
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Thank for the kind welcome, Erica! It seems like such a lovely group of people and very supportive!
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Thanks for the lovely welcome, Rammie. The group seems like a great place to get started. He has a lot of ahead of him, but Im hoping, with support, we can get him to a comfortable place where he can handle all the changes Polycythaemia vera (PV) has brought to his life.
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The early days/weeks/months are always the hardest.
But it does take time to run tests over a period of time so decisions can be made on consistent results rather than on a whim or basis of the most recent.
I wasn’t on any treatment for a year but had regular blood tests, aspirin and the odd venesection. Knowing you have cancer and not being on treatment can put you on edge and fear but it’s only worth going on treatment knowing it’s going to make a positive outcome both short and long term.
The charity are soon to release a Polycythaemia vera (PV) booklet which I’ve had a sneak peak at and looks and reads amazingly. Really wish it was available when I was diagnosed as there isn’t much particularly from the uk about Polycythaemia vera (PV).
I think it’s really good to get knowledgable about the condition and possible treatments but please do remember everyone is different and unique.
I found a few webinars on YouTube from non voice really insightful though a bit too medical at times and I’d definitely recommend reading or watching anything on Polycythaemia vera (PV) together so it’s a shared learning experience. Maybe ask your haematologist to get you in contact with an Myeloproliferative neoplasms (MPN) specialist if they aren’t one or non available at your hospital.
One thing that will be frustrating is that not many know what Polycythaemia vera (PV) is so it’s important you show you are so you’re not fobbed off, which regrettably can happen and not so helpful during the early days
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