Chat to fellow attendees at Edinburgh

Get in touch with others attending the Forum - ahead of time and keep in touch afterwards.

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sophie
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Chat to fellow attendees at Edinburgh

Postby sophie » 29 Mar 2011 12:00

If you are attending the Edinburgh Patient Forum on the 20th May 2011 - why not leave a message on here to say hello and get to meet other attendees ahead of time.
Then keep in touch after the forum as well - and carry on discussions via the forum.
It might also encourage others who hesitate to attend patient forum events.
Thank you
sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Chat to fellow attendees at Edinburgh

Postby Jayne » 23 May 2011 16:19

I didnt attend the event in Edinburgh (I was actually advised against it by my Professor), but I would love to know how it went and what people thought. I am 41, very new to MDS, I dont have many symptoms and I think my Prof thought it would scare me. Did you learn anything new? Any new treatments? How many MDS sufferers do you think were there, age range etc. I would just like to know what happened really and maybe what is in store for me, lol! Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: Chat to fellow attendees at Edinburgh

Postby sophie » 23 May 2011 17:09

Hi Jayne - welcome to the online forum.
We had a well attended patient forum, with about 50 people - patients and relatives.
Different issues came up - about fear of transplant, successfull transplants, iron chelation, transfusions, azacitidine.
Almost everyone spoke about their own experience.
We will have an anonymised transcript of the whole session soon - if you wish to read it.
We will also have another patient forum in Dublin on June 17th - and one in London end of September.
Please do look at the website - if you can cope with the information on there - you could cope with a patient forum. And you would meet many people with MDS.
Why don't you give me a call if you are feeling unsure.

I hope a few people who attended will log on to talk about their experiences.
3 of them already emailed me to say how helpful it was.
All the best,
sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Chat to fellow attendees at Edinburgh

Postby janetstanford » 24 May 2011 00:24

hi sophie

glad to hear the edinburgh forum went well ....just a question was there anybody there from the newcastle area if so and they are willing to chat or meet up i would be glad to..there seems to a few members from the york area i seem to stand alone maybe they just have not found the site yet?? i have been told by doctor that the only other person he treats similar to me is a child (bless) so if you know of anyone i would be happy to be put intouch with them if they are ok with my request

do hope you are able to help me
many thanks janet :(
Last edited by janetstanford on 24 May 2011 00:29, edited 1 time in total.
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: Chat to fellow attendees at Edinburgh

Postby janetstanford » 24 May 2011 00:27

p.s sorry i was not there wanted to be had a scheduled blood transfusion 3 units..it would have been good to put faces to names and talk to others with same issues fears ect

take care janet
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Chat to fellow attendees at Edinburgh

Postby chris » 25 May 2011 15:15

Hi Jayne

I think it is such a pity that you were warned off the Forum as my experience of attending these events is quite the opposite. I was given virtually no information about the disease by my haematologist at diagnosis so I googled it and was duly terrified!!! By the time I got to the Cambridge Forum in November 2009 I was convinced I had very little time to live and was at huge risk of contracting an overwhelming infection or suffering internal haemorrhages. Having read it was largely a disease of the elderly I thought that the Forum would be attended by elderly, very poorly people! None of this turned out to be the case and I found the day and the 2 subsequent fora I attended to be really informative and supportive and being in contact with the MDS Patient Support group has given me access to lots of resources about MDS which have actually been very reassuring rather than scary.

If you want more information about MDS, I would suggest you go onto the link on the home page to the AA MDS "webinars" where there are lots of resources and recordings of lectures about different aspects of MDS and you can dip into these as much or as little as you like. I will send this link in a separate post as I haven't yet mastered leaving a post without losing everythhg I have just typed!It is true that if you have a low-risk type of MDS and not many symptoms, reading about the more aggressive types can be worrying so, as Sophie says, it all depends on whether you are somebody who is curious about their disease or somebody who would rather not know!

I hope you get somethoing out of participating as that is what it's all about.

Best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Chat to fellow attendees at Edinburgh

Postby chris » 25 May 2011 15:22

Hi Jayne

Sorry, just realised that the link is no longer on this (MDS UK Patient Forum) site so here it is. There are tutorials and archived webinars and you can register to hear any future ones that you are interested in. All FREE!!

[url]
https://live.blueskybroadcast.com/bsb/c ... ent=680927[/url]

Hope you find it useful

best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
lesley1056
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Joined: 21 May 2011 23:46
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Re: Chat to fellow attendees at Edinburgh

Postby lesley1056 » 25 May 2011 22:05

Hi Jayne, I went to the Edinburgh Forum but i found out about it myself, nobody at hospital i attend (which is also in Edinburgh) even mentioned it to me. Im 45 and this MDS is pretty new to me as well, im getting a bone marrow transplant in a few weeks, i feel a bit alone in all this but the meeting was very interesting and positive i think. Take care Lesley
alistair
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Joined: 19 May 2011 10:02
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Re: Chat to fellow attendees at Edinburgh

Postby alistair » 27 May 2011 12:23

I attended the edinburgh forum and found it interesting, the guest speakers were very informative and enjoyable.Jayne get another doctor, there are better ones out there who will not hide anything from you. i saw my doc the day before the forum he did not even know it was on, when i told him there could be a link between my medication and MDS he didnt want to know. will not be seeing him again. go to the forums,the people are nice, its not scary and you will enjoy yourself. make a weekend of it, you will leave with friends who do care. any questions call sophie, a mine of infomation.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Chat to fellow attendees at Edinburgh

Postby Jayne » 07 Jun 2011 15:25

Hi All - thank you for the many replies and thanks for the link Chris, I will look into it.

I am a very curious person and believe I have read an awful lot about this illness. My own GP said he would have to read up on MDS and it would be a case of us learning from each other lol. He is actually a very lovely and supportive GP and I trust him implicitly. I do trust my haematologist at York. I still have to create a relationship with my professor in Leeds, but I do believe that will come and I know he is more than capable of taking care of me. I believe he actually organised the Edinburgh event. I dont think he made a wrong decision in advising me not to go, I suppose there is plenty of time for that. In the early stages I read a couple of on online diaries of people in the US, one of which was written by Shirley Bulloch, she had a transplant and her diary is very detailed, I now have email contact with her. 10 years on, age 70 she is still writing it. Although it scared me to read the details the fact that she is still alive and enjoying life is brilliant.

Whilst I know all the details and I know what is in store, the bit I dont know is how much time I have still feeling well. I have decided to try to live my life as normal for now and I am succeeding. I have read a lot of how the mind can heal the body and have started to meditate (I had a period when I struggled with my breath), but this is now under control as well. I had 13 weeks off from work during the diagnosis period (I also started with trigeminal neuralgia at the end of Jan, it all came at once!) and whilst off I became calm and relaxed, now I am back at work I am trying to maintain that feeling and not get swamped and stressed, this isnt easy but I feel it is imperative in order for me to feel well and positive.

Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.

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