Didn’t get 100% success at last night’s London forum although to be fair my Where’s Wally shirt was hidden under my coat for some of the time and I do look scary! Nice to meet Alison, Paivi, Susana, Melanie, Ala and Katherine (again!) as well as catch up with Pauline B who has been an MF-er for several years and still looks good and Annette who is one year out of SCT and, after a tough time, is starting to bloom. Also briefly met Mr XXX Higgins (didn’t catch his first name as it was the end and I had to rush off for a family emergency) who was three years out from an SCT for AML which is a tough one so he’s doing well despite some GVHD. Hope some of the others used my note to meet in the break out groups.
Sorry I didn’t catch the rest and I noted that many more put their hands up when it was asked who uses Healthunlocked. And of course no-one looked ill and the sandwiches were good!
Glasgow next and Maz said there are 120 booked in so perhaps they will need to move to a football ground! Will turn up if there are any MF-ers who wish to know more about SCT and the options, but no where’s Wally shirt as it could be too cold.
Chris
ps _ Anyone going to Glasgow?
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Really nice to meet you Chris! And you did not look scary at all, you looked very well indeed 😊 I thought the Where’s Wally T-shirt worked brilliantly as I saw you as soon as I arrived. Just a shame that there was not more time for a chat. And would have been nice to take a group photo! I really enjoyed the talks and the Q&A - and am very grateful to Professor Harrison and all the wonderful doctors, nurses and MPN volunteers that gave up their time on a Friday night to put on the event 💛. The atrium location was not as good as the 26th floor space of previous events though - I missed the magnificent London views 🏙! Unfortunately I did not join the breakout group as was really tired after a long day at work and had an early start today. Hope to meet again next time! Susana x
Yes, enjoyed meeting you and understand the early bail out as I worked long days near there, next to the Globe and in docklands with a long commute. Shame you missed the breakouts as they tend to be the best bits.
Yes, the Proff is brilliant and has a great team. I owe her a lot for helping me to get on the transplant route after my first hem dismissed the idea as unproven. It is because of her and our wonderful NHS that I have been doing buddy work for seven years and attend Mpnvoice regional meetings when I can, and if MFers will be there to help.
Great to meet you Chris and Pauline B. Is so good to see people who have had the condition for many years and still managing well - gives me hope. Really enjoyed the forum well worth attending will be back next year
I’m sorry that I missed you. I did look around for the distinguishing shirt, but alas did not spot it! Most of the men I noted had coats and jackets on.
Unfortunately, like Susana I also didn’t stay for the breakout session. After a long day of travel and trekking around London mainly on foot I might add, my daughter and I had a table booked for dinner in Covent Garden for 9.00pm, so we didn’t want to risk it.
It was lovely to meet Maz, albeit briefly. I am totally in awe of the MPN experts who shared their in-depth knowledge with us. It instils you with such confidence. I’m sure between them and their global counterparts we’re certainly moving towards better and safer treatments and ultimately, a cure one day soon!
A huge thank you to all of you who work tirelessly on our behalf.
Shame you missed the breakouts as they are the best bit as you can share and listen to others; but Covent Garden is good too! We use Fire and Stone there for our pre Theatre meals.
I had to rush off at the end to get home and then drive back to London as my son and his wife were away and couriers has left a carrycot in their front garden! It rained overnight so was a good save!
There will be more regional meetings closer to you next year.
Rgds
Chris
Ps As my sons and daughter-in-law are police officers I will have to try and get one of their blue flashing lights next time ! 😀
I love the atmosphere of Covent Garden. We always dine in the ‘Palm Court Brassiere,’ which is excellent. It’s always good to get recommendations though, so will consider ‘Fire and Stone’ next time I’m down.
Great admiration for both your sons and daughter in law. I witnessed so many armed Police officers in London yesterday around Westminster and outside the Israeli Embassy etc. They do a fantastic job!
Fire and Stone do odd but very tasty pizzas and pasta, often having a good deal going to book online.
Am proud of my family and their jobs, they have some pretty awful things to deal with and we don’t hear the half of it. People moan about them but who are the first people they call when there is trouble? (Steps down off orange box) 😀
Believe you me, Palm Court Brassiere is a real treat, as it’s only occasionally I come to London.
I was at a Meadowhall last year and there were armed police officers. With some trepidation, I approached them to thank them for all they did for us to keep us safe. They were so delighted! You’ve every right to be proud.
Yes I’m friend is a long term MF’er (I thing 10 years plus). He will be attending the Glasgow forum from ABERDEEN. I don’t think he uses HealthUnlocked.
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And of course no-one looked ill and the sandwiches were good!
I Loved the MPN London Patients forum tonight x
Confused! Do I have to follow up everything from my consultant with my GP?
Oxford Forum: I won’t be doing the patient experience talk
