Edinburgh forum

[Aime]

Maz can I just thank you and your amazing team for organising the day and also the medical staff who gave up their time for us. It was so nice to see the "human side" of the medics, that they did have time to care and it wasn't just a job they did! They were all lovely people and if my counts start throwing wobblers, I will be asking for a second opinion from them.

We are so lucky to have the fantastic support and network to get us through the worrying times and each forum I attend, I always learn something new. I would urge anyone who has an MPN and who hasn't been to a forum, to go. Thank you so much Maz and everyone else, for me MPN Voice is a life saver and the best friend ever!xx

Kindest regards

Aime xxx😺😺😺😺

[Inca]

Hi Aime,I am hoping to get to the London one.Really need to meet others and experts .Long trip for us and dogs, right up thru France ,stay with our daughter in Wilts......already worried about it all!!! Have two shows as well,I don't cope well with stress now,your post has spurred me to get going. Keep wellxxxSally

[Aime in reply to Inca]

Hi Inca,

Good for you. I didn't have nearly as long a journey as you - 4 hours each way. If you can make it you won't regret it. Kindest regards Aime xx😺😺

[Mazcd Partner MPNVoice]

hi Aime, you are more than welcome, we all enjoyed it, and it was lovely to see so many people there, and thank you once again for helping out. The doctors were great, their talks were just at the right level, as was Jean's, she is such a great nurse. And both of the patient speakers were brilliant. We will definitely be coming back to Edinburgh next year. Maz x x x

[Phelpsy]

Aime

I know just how your feeling it's just great seeing Maz & the MPNVoice team & all the Dr's & Nurses who give up there time to listen to us , & give us great advice that makes a huge difference to know we're not alone ,

I've only attend 1 forum

But can't wait for October to meet the team again in Newcastle.

My husband loved it to ,

Learning my fatigue & symptoms aren't just in my head , he understands the disease a lot better x

Best wishes

Love Pam x

[Aime in reply to Phelpsy]

Hi Pam,

Thank you, I just feel we are all so lucky to have MPN Voice and this forum as well as the opportunity to meet the medics involved and comforted and supported by their genuine concern for us all.

My hubby learned a lot as well, more than I think he admits. I think he understands better how bad I sometimes feel and as you say that it's not all in my head!! I was unfortunately diagnosed at the same time as my mum and dad were ill, had to give up their house and move into a home. 5 months later they died within 6 weeks of one another and everyone was convinced I was suffering from depression which i suppose was understandable but my hubby had the haematologist believing the same which really upset me!! No one listened to me that fatigue was different from the tiredness I experienced with depression. In the end I was right.

Hope you enjoy the forum and your hubby gets the info he needs which I'm sure he will.

Kindest regards Aime xx😺😺