Wow what a brilliant afternoon. I would just like to say thank you to all that had replied to my nervous post, and to those who spoke to me whilst there.
I wasn't very talkative as was so scared of crying !! which eventually i did.. apologies.
I feel so much more positive listening to the stories of others with ET and the other MPN's and also the professionals.
I wish i lived closer to a city where there was specialist clinics but will be contacting Newcastle and will travel.
I feel like for the 1st time since June i might acually sleep tonight. I cannot tell
you how mich more positive i feel, like i have had a death sentence taken from me.
Thank you Maz and the other lady who ran the afternoon( apologies i can't remember your name)
Tara xx
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ladydriva
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Glad you got so much from the event. Don't apologise for crying: It's just being emotionally honest in a place where that is OK. My own experience is that if people don't share the negatives , then when they share the positives it doesn't mean so much. For me the emotional crash was , and is, one of the hardest things about realising I had a life limiting illness. At 68 I'd thought I'd have lots more time to enjoy life. And now I haven't. Which is sad.
I'm going to the London event in November. Its the first one I'll have been to, and almost exactly a year after my initial diagnosis of some sort of MPN ( initially ET, but after a bone marrow biopsy MF was confirmed in Jan 2017).
My fears about crying were actually worse than doing it in a room full
of people who were all very kind.
I'm so sorry to hear about your confirmation of MF. I am only slowly learning more about MF.
Obviously I am new to this whole situation but have a good friend who has a different life limiting condition and the way she deals with it is to have plans, short term and long term.
She deals with the condition head on,ensuring she knows everything there is to know about it and feels like she is more in control.
Not sure if this helps whatsoever, just my friends way of dealing with things.
Hope the London event brings you as much positivity and hope as the Edinburgh one has for me.
Thanks, Tara. I too like to know what there is to know, as well as crying if I need to. And this site is a good way of finding out whatbthere is to know about MPNs. Can't remember if I've posted this before but the Mayo clinic has excellent info on its site. The data on median life expectancy for people with various stages of MF, for example, is based on one of their studies.
I remember freaking out years ago by something similar. But then my specialists explained that that number of years isn't applicable to every person because it's comparing apples to oranges. It depends on your age, health, comorbidities, etc. For example, if the majority of patients in the survey were much older than you (which seems likely for a diagnosis of MF), in poor health and not receiving good treatment for their MF cancer, their lifespan would be much shorter than someone as young as you. It makes sense once you think it through. I hope it helps you to learn this.
I went two years ago and it was fantastic to meet so many others who simply understand. Also there were some amazing speakers there, both doctors and those with MPNs, all of whom made such a positive difference.
My mum came with me and spoke to Maz who did an amazing job of putting her mind at rest over my ET.
Talking face to face with others can make such a difference.
Talking of "death sentence", I was diagnosed in November '16 and I discovered how traumatising and stigmatising a diagnosis can be. My GP seemed to be more traumatised than me, I was not at all upset, maybe because I do not have any symptoms and do not know the possible implications of my condition. It is important not to take upon yourself trauma that someone else may be feeling. We all have to come to terms with the deterioration that happens when we get older and manage the best we can in these challenging times.
I'm so glad you feel yesterday helped. For some reason I felt yesterday in Edinburgh had a particularly warm atmosphere and people were very much upbeat and connected. Maybe it's because I was more relaxed being my second Forum.
I would like to thank all involved in organising and speaking it certainly was a very supportive day. I now also think there are a few of us going to try and meet up in Edinburgh for a wee coffee and supportive chat so I'll let people know when we arrange it.
I loved listening to the speakers and especially other peoples stories when the groups split off.
I would love to meet others with ET but am in Cumbria. With enough notice tho im sure i could combine with a shopping trip if you could keep me
updated.
I hadn't thought if attenjng another forum.. do people do that? I know the next 1 is Newcastle which has been recommended as somewhere i could transfer my care too.
Hi Tara, so pleased that you came to the forum and that you felt much better after seeing everyone, it was a lovely forum, and so nice to see new and old faces there. You can come to any of our forums, if you are willing to travel then you can come, so please do come to the Newcastle forum if you can. Best wishes, Maz
Yes we spoke, I bought some xmas cards, a bag and lots of pens( nurses can never have too many pens n those 1s are sought by all of us as they are what we call 'nice writers' 😂😂
Thank you for helping me feel at ease, was this your 1st forum?
Hi ladydriva, yes I remember the pens.😺😺. I was at forum in Inverness last year and 2 years ago in London which were all good but the London one is special when you get a chance to hear from the MPN medics who are world leaders and experts in their fields. Again everyone is so friendly. Keep in touch Lucy xx😺😺😺
Hi Lucy, thank you so much for stepping in at the last moment to man the stall, you did a brilliant job and it helped me enormously, you are a little star. Maz x
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