The Family and friends forum London 24th Sept 2010

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Paul

The Family and friends forum London 24th Sept 2010

Post by Paul » 27 Sep 2010 11:22

Hello

I was diagnosed with RCMD in May 1010 and have been feeling devastated since. (Still at watch and wait)
Kings College Hospital (whose care I am now under) suggested I attend The Royal Lancaster Hotel event on 24th Sept.

Though I could only stay for the morning it was excellent (thank you to the organisers)
Meeting and speaking with other people who had not only heard of MDS but actually had it was almost like coming home. It made me feel much less isolated.

I am sure a Psychologist would say it was a form of Stockholm syndrome

I would like to hear from anyone else who attended and how the afternoon session went


Memory problems
(Not sure if it is part of the condition, or the depression I have been suffering since diagnosis or a combination of both but my memory is awful and my spelling and keyboard skills getting poor...has anyone had anything similar?

Regards

Paul
Paul

Royal Lancaster Hotel Furum24 Sept 2010

Post by Paul » 06 Oct 2010 14:17

Hello

I was at this meeting ansd found it useful and helpful.

Anyone who was there and would like to contact me please do so.

Regards

Paul
P.S. Doe anyone else have mempry problems?
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Royal Lancaster Hotel Furum24 Sept 2010

Post by chris » 23 Oct 2010 15:56

Hi Paul

Somethin strange seems to be happening with the Forum as, althugh i visit regularly I had not seen any of the September postings until today!! Stuck in the ether somewhere I guess!!

I'm Chris and you may remember me from the Forum. Glad that you found it helpful. There were certainly lots of people there and it went all to quickly for me. I noticed that you were not there in the afternoon session and I thought "what a pity" as Dr Chris Dalley's session was really informative and helpful and I think you would have got a lot from it.

My memory is definitely not as it was but none of us is getting any younger!! I also think that when one's mind is on "thoughts of MDS" all the time, it pushes other things away and makes concentration and memory less efficient. I also have RCMD - although sometimes I am in the CMML category - depends on how my monocytes are doing on the day! I think watch and wait can be a bit scary and for some people it can feel a bit helpless/ hopeless but, frankly, I'd rather be on watch and wait than other treatments as that would indicate progression of the disease.

Hope you are feeling a bit better about your diagnosis and that you are keeping well.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Sophie
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Joined: 20 Nov 2008 14:05
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Re: Royal Lancaster Hotel Furum24 Sept 2010

Post by Sophie » 01 Nov 2010 10:13

Hi,
sorry about the posts not appearing instantly - this was due to a technical issue setting up the new forum. :x The webmasters should have spotted this and informed me - but it never happened. I relised when 2 members informed me. I managed to fix this and there should not be any further problems. :roll:
Chris Dalley's slides will be uploaded to the website.
Thank you all.
sophie
Sophie - Patient Liaison
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