Food was good and staff were excellent ,,so polite ..
We all seemed to learn a lot and as is usually the case friendship s were forged .in the chat circles at the finality of our evening ,,congratulations to the whole team of MPD voice ..for a job well done . Thank you all so much from violet and perry ..xx
I agree with Twinkly about the forum at Guys last night. It was the first one I had attended and I was very impressed with the whole event. Not much chance to talk to others but I learnt a lot and bought some Christmas cards. An especial thank you to all the professionals and volunteers who gave their time. I really think I am glad that I am too old to be considered for a stem cell transplant.
Little friend Susan
I agree with you about those stem cells ..if I get to that stage ill buy the porche on credit ..and drive off into the clouds !! Twinkly
So good to see people, especially Maz and Twinkly(sic). Walked to station with a delightful young lady, as we parted I found out she was one of the haemo team. Said I wanted to transfer to Guys!! Still, my consultant is a sweetie. Love to all Elsie xxx
Fab forum. Always nice to put worries at rest and to meet such wonderfully inspiring people!! Thank you
sounds as if was a wonderful experience and so pleased it went well but for us that were unable to make it could we have some more information regarding the stem cells please this is an area I know nothing about thank you all
Hi Shelley. I was one of the two transplantees and can help you if you want more info. Transplant is not easy but is worth it. I know 30+ who have gone down that route for MF and there are many many more. Chris
Hello Shelly I know there have been some really good results from Stem Cell Transplants and there are people on here who can verify all that . Take care
Ty
You sure you really want to know???
I'm only kidding !!
On the evening it was mentioned ,the slides we saw may go onto
Our web site so you can see for yourself ...it's incredibly complicated .
But I must add the specialist young doctor who spoke was not only an expert
But also quite beautiful ,,very enthusiastic, Two men were at the forum who had been successful they both had been so ill before ,but looked well and hearty now.
One said his spleen had been a real problem .but all is well now ..his wife said to my son perry ,he was a new man she had her husband back ..and
D felt bad times were behind them now .. The group chat for carers and family is
Such a success my son was really impressed .. Twinkly x
Ty
Agree that the evening was enjoyable and informative. Thanks to all involved in setting it up and presenting the evening. Many thanks also to Violet and Perry for the lift home. We were very grateful to get home quicker after a long day in London. Barbara x
Liarose .. You are so welcome my dear .. Don't you think my perry would make a good cabby ?? See you soon at Cambridge I hope ..
This was my first forum at Guys and I was truly impressed with everything. Kudos to all the people involved for organising this very valuable meeting for us. I am very blessed to be a patient at Guy's Haematology 2 clinic. It's one of a kind. All professionals are very good one, kind and carry, which was also seen through out the evening. Thank you so much, and may we continue with this attitude and approach towards patients that you care for.
I would have loved to attend but the first I knew of the date was after it was fully subscribed despite being signed up to receive all the posts by email. If there were a lot of people who were unable to attend for the same reason would it be feasible to hold them a little more frequently? Keep up all your good work, it is real lifeline to us all.
Same here idi76, one minute we were awaiting confirmation of date and the next it was fully subscribed. I really don't know how I missed out as I check my emails several times a day.
Hi Val_P and idi76, I sent out the email blast regarding the London forum to everyone on the mailing list on 17th September, I am afraid I couldn't send it any earlier as we were waiting for confirmation of the room booking. Can I ask you both if you get the email blasts, these are the email announcements I send out periodically about forums, fundraising events and other news, I use Mailchimp to send them, the address they come from is: MPN Voice [maz.cd=mpnvoice.org.uk@mail79.atl51.rsgsv.net]; on behalf of; MPN Voice [maz.cd@mpnvoice.org.uk]. They may go into your junk folder, I wouldn't like to think that you are not getting the news from me. With regards to the forum being fully subscribed so quickly, I was inundated with people booking to attend, and it filled up very quickly, we were restricted to a smaller number this time as we were using Guy's Hospital and couldn't have as many people attending as we usually do at St Thomas' and also, we weren't able to hold a forum in May which we usually do. I am sorry to you and everyone else who couldn't get booked on, this is the first forum we have had to turn people away from. Maz
Hi Maz, I have checked my emails and the last email received from you (Maz.cd) was MPN Voice - June 2014 Newsletter on 3rd July 2014.
Can you please check if I have disappeared from your mailing list.
Thanks
Val
Hi Val, can you let me have your name and email address and I will check as I have sent out lots of notifications since July, can you send it to me either in a private message on here or email it to me at maz.cd@mpnvoice.org.uk. Thanks, Maz
You know this forum was held on the 29 floor of a tower at guys ,so high up you could see the view of twinkly lights all colours as if dressed up for Christmas ..in the distance a carnival and fairground with wheels and coloured carousels on the black skyline .the new London skyline is so changed ,with tower block high rise buildings ,the room we were useing has floor to ceiling glass allowing us inside to see so far into the distance ..the limited numbers is understandable,I think ,if there was an emergency situation it's such a long way down the stairs , so many of us don't move so fast these days...it's sad for you who missed the forum ..book up quick next time ...twinkly. Xx
Elevated platelets and feeling poorly all the time
Spontaneous remission of some blood counts after Dx
Test day
Hi, I'm new here and too scared to start HU
Bone pain and chills follow-up
