Hi all, I've just been to my first forum talk today. Would just like to thank maz and everyone for all the hard work they must do to set these talks up. I found it all very informative as I've only been diagnosed 4 months ago with E.T and has been a rollercoaster of emotions.
Maz loving the blue hair. Thought you were very colour coordinated with the blue background too.
Thanks and best wishes lainy.
Thought I would touch base with you Lainy1. I was just diagnosed in April with ET myself. How are you feeling??
Hi, I find some days better than others. I have a great deal of bone pain even although my platelets ha e came down by 1million. Had 3 day long headache last week that floored me. My heam put my hydroxy up to three at the weekend now and the usual two during the week. Still off my work bit hope to go back in two weeks time. How are you dealing with it ? Have you been put on meds ECT.
Beast wishes lainy x
Was so wanting to go to this yesterday but didn't get away from work in time x
Hi, it was very good. My husband was unable go come too as he started back work that day after 6weeks off. My daughter found it useful too
Hope you can make the next one.
Best wishes lainy x
Yeah,they were saying the next one will be in the beatson as they have had it at kirklands the last two years. Was good to see older people there who have lived with it for over 23 years. Hope I live with it till a ripe old age,relatively healthy 🤗
Best wishes lainy x
Hi Lainy, it was lovely to meet you, I thoroughly enjoyed the forum, it was a great afternoon, and all the speakers were great, such interesting topics, I think we could have been there all day listening to them and I am glad that you found it helpful. Glad you like the hair. Best wishes, Maz
NEW AUSSIE MPN FORUM LAUNCHED TODAY - MPN-MATE.COM
How many on the forum in the west midlands?
Patient forum london
A question for Maz , hoping you can help .
Someone Mentioned It's Christmas
