I have just seen there is a Myeloproliferative neoplasms (MPN) voice face to face meeting in Nottingham on August 6th. Registration, for the free event, on Eventbrite. More dates and venues too.
Hopefully this is the link for Nottingham-
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@Lynd signed up for the Newcastle one last month, they seem to have extended the venues this year.
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My first time. Really looking forward to it.
Lx
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@Lynd missed last years date as I had only just been diagnosed and was starting my research journey, looking forward to meeting people locally
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I started treatment last November. Not sure what to expect, and taking a friend to help me remember everything.
Lx
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@Lynd mine is not till October, so any notes on what to expect will be welcome. Give my regards to the Blue bell and that old gin palace known as Yates
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Will do. I’ve signed up to a Polycythaemia vera (PV) break out group during the session. Please share anything, too. I know we all pick up on different things.
Lx
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These sound great @Lynd and @clickinhistory, I’m looking forward to your findings already 
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First face to face forum for me, really looking forward to it. I’ll be sure to share everything I can.
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I was thinking that if it’s anything like the conference I attended earlier this year then the chance to chat with others living with all this could be really great.
It was strangely comforting to commiserate and even joke with folks living with MPNs and we shared some tips on what to look out for with our respective illnesses.
Hopefully you’ll get some cool freebies too!
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Thank you for sharing your experience. I have never spoken to anyone with a Myeloproliferative neoplasms (MPN), face to face. I once discovered a pharmacist who also dispenced Peginterferon, at a hospital and it was so good to chat with someone with an understanding of the treatment.
Freebies, oh that sounds exciting 
A pen would be fab, how sad am I 
I’ll keep you posted 
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Hello @Lynd - great you have registered for a Myeloproliferative neoplasms (MPN) Voice patient forum you will so enjoy it! Prepandemic they were held all over the country and I have attended a good number (I am a long time Essential thrombocythemia (ET) patient) and they are really relaxed, enjoyable and supportive - the Myeloproliferative neoplasms (MPN) Voice team, Maz, Nona are lovely and will make you very welcome with some guest speakers from the medical field and usually a couple of patient items too it all goes really well. The breakout groups are lovely to chat and ask questions too. I know in my early years of diagnosis (18 years ago!) I felt very alone with my rare unusual blood cancer but then was under a new consultant who was hosting one of patient forums at my hospital and invited me to it - that was my introduction to Myeloproliferative neoplasms (MPN) Voice and the forums and I still remember what it felt like to be in a room with so many others who were dealing with exactly what I was including those hosting it Maz and Nona 
and I enjoyed then going each year after. We switched to them online via zoom in the pandemic and now there’s a mix of both so it’s handy to be able to use whatever you are able to attend now. Enjoy it!!
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Hi @Jilly20,
Thank you for sharing your experience too. Ive never met anyone face to face with Polycythaemia vera (PV), or any Myeloproliferative neoplasms (MPN) so I’m excited and anxious. Great to hear it’s a relaxed, positive experience. Please let me know if you decide to go too.
Lynd x
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Just wanted to thank you again for sharing this conference information @Lynd, my dad is now attending one near him thanks to you! Hope this finds you well.
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That’s great to here @Duncan. I hope your dad, enjoys the experience and finds it informative too. My first, as you know, excited and apprehensive but keen to meet others with Polycythaemia vera (PV).
I hope you are well too. I’m finding the warm weather seems to affect my joints, more achy than usual but I’ve had blood tests today, so I can talk to my haematologist tomorrow, to see if it’s temperature related or not.
Take care xx
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Oh that’s great that you can ask your haematologist directly @Lynd. Not to be taken for granted considering some other forum member experiences of theirs, I’d say!
I found after starting daily hydroxyurea last year that historic injuries began playing up again, like tendinitis in my elbow and finger. My haematologist at the time didn’t think they were related. Apparently gout can also be a side effect of MPNs like Polycythaemia vera (PV), which affects joints. There are simple tests for checking for gout.
So yes pass it all by your doctor tomorrow, if only for them to make note of it should it continue. Hope it goes well.
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Thank you @Duncan, I’ll be sure to mention it. I have blood tests every 4 weeks, with a follow up call, for results with a haematologist at the Hospital. Every 3rd test I get a face to dace app too. So extremely lucky.
Every day can be different, but ive noticed the temps seem to make a difference. 9 mths on peginterferon for me, hoping platelets have fallen again
Really aporeciate all your advice & support. You’re so kind to look out for us all,on the forum.
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Aww @Lynd, you are most welcome. Thank you for making my day with your lovely compliment. Share and share alike I say!
I’ll keep my fingers crossed that your platelets have dropped too, I know that anticipation well! And you know, if they haven’t decreased this time then there’s always next month. Something that cheers me up in months when my blood cells aren’t behaving is that they can still be considered in the normal ranges—just not for those of us with these blasted cancers!
Living with all this is definitely a lesson in patience…
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Perfectly said Duncan. I do get a little impatient, at times. Every day is different, some are harder than others but on the outside all looks the same. It’s definitely a learning curve.
Thank you again for helping me and others on our journey, honestly, I dont think you realise just how much you’re support is helping us all.
I’m going to have cake today and watch our Y6 children do their leavers play, apparently someone will be playing me. I dread to think what she’ll say and do. Hopefully something funny and whacky as I’m wellbeing support 
I hope you enjoy your day, and have a treat too.
Lynd xx
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Oh I love that you’re treating yourself to cake and your students are treating you to a performance, and with you as a character?! Sounds like you’re very important to them too @Lynd, what a sweet gesture.
Working with kids is like a whole other amazing source of energy, don’t you find? It’s like we can grow too from being in their proximity. Never thought I’d feel this way but I miss my children’s home and school days a lot sometimes, they kept me lively and on my toes!
Today I came out for a hike and a café treat, thank you for the marvellous suggestion 
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