contact request

Post here to make contact with others in specific regions of the UK.

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sue

contact request

Post by sue » 21 Mar 2009 10:06

I was diagnosed September 2008 with mds RARS I would like to contact anyone in the Essex area who is feeling as isolated as I am
Angela
Posts: 7
Joined: 25 Mar 2009 22:59

Re: contact request

Post by Angela » 22 Apr 2009 23:01

Hi Sue
I am not from Essex but only over the bridge in Kent so I thought that was close enough to reply to you. I felt isolated too as MDS wasnt very well known about when i was diagnosed. I did have support from Kings college hospital though and met patients in the waiting room and discussed our different MDS's with eachother. If you would like to talk to me please don't hesitate to contact me.

Angela
Posts: 7
Joined: 25 Mar 2009 22:59

Re: contact request

Post by Angela » 22 Apr 2009 23:01

Hi Sue
I am not from Essex but only over the bridge in Kent so I thought that was close enough to reply to you. I felt isolated too as MDS wasnt very well known about when i was diagnosed. I did have support from Kings college hospital though and met patients in the waiting room and discussed our different MDS's with eachother. If you would like to talk to me please don't hesitate to contact me.

sue

Re: contact request

Post by sue » 25 Apr 2009 10:37

Hi Angela
Thank you for your reply,although you wouldn't wish this on your worst enemy it helps to know their are others out there. I am under Colchester Hospital and couldn't wish for a better consultant
I attend for transfusions,but no one discusses their illnesses. I have a wonderful family who want to smother me, which as you probably know doesn't really help as you need to get on with life.
How long have you been diagnosed? and which mds have you got? its lovely to be able to talk to some one and thank you once again'
Angela
Posts: 7
Joined: 25 Mar 2009 22:59

Re: contact request

Post by Angela » 02 May 2009 23:34

Hi sueGreat to hear from you.
I was diagnosed in 1997 when I was 20 and back then it was just mds but I have low platelets I have posted a short version of my story on here. I know what you mean about being smothered it drove me crazy! It's so hard to get the balance right. It is hard talking to other patients with mds as you never know how they will react. If they are having a bad day or just don't want to talk about it. When you are next at the hospital you could ask your consultant if there are any patients willing to have a chat. If the consultant isn't sure perhaps you can tell him or her that you would like to. What treatment are you receiving? Have they told you about any long term treatment for you? If you can't find my story (I can't remember which heading it's under now but I posted it on 22 April) let me know. Take care and hopefully I will hear back from you.
Just looked my story up it's under ideas and thoughts on the website then social issues.
Angela
Posts: 7
Joined: 25 Mar 2009 22:59

Re: contact request

Post by Angela » 02 May 2009 23:34

Hi sueGreat to hear from you.
I was diagnosed in 1997 when I was 20 and back then it was just mds but I have low platelets I have posted a short version of my story on here. I know what you mean about being smothered it drove me crazy! It's so hard to get the balance right. It is hard talking to other patients with mds as you never know how they will react. If they are having a bad day or just don't want to talk about it. When you are next at the hospital you could ask your consultant if there are any patients willing to have a chat. If the consultant isn't sure perhaps you can tell him or her that you would like to. What treatment are you receiving? Have they told you about any long term treatment for you? If you can't find my story (I can't remember which heading it's under now but I posted it on 22 April) let me know. Take care and hopefully I will hear back from you.
Just looked my story up it's under ideas and thoughts on the website then social issues.
sue

Re: contact request

Post by sue » 05 May 2009 12:30

Hi Angela Lovely to hear from you again,but you were so very young when diagnosed.Ionly have supportive treatment ,so far it has been transfusions and antibiotics, a bone marrow transplant was mentioned but my siblings are to old, and so am I, also I only have the one kidney, which apparantly would make it to dangerous. My Consultant has suggested a trial and I agreed but nothing has turned up yet.I have read your story and find the fact that you have had a baby and you work inspiring well done you! I have decided if possible that I will go to the London seminar that way you know what is going on with new drugs etc. Take care and look after youself
chris
Posts: 646
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: contact request

Post by chris » 01 Dec 2009 22:00

Hi Sue
I am a new member, recently diagnosed with CMML and was thinking of setting up an MDS Support Group in Essex since there does not appear to be much support/ information around. Would you be interested in setting up a local meeting, posibly in Chelmsford or somewhere else central ( I am in South Essex).
Chris. (F) Age 71(2021). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex
sue

Re: contact request

Post by sue » 04 Dec 2009 08:51

Hi Chris,Yes! I think any kind of support is good, I will indeed help in any way I can. Chelmsford sounds OK for a support group, I am in the Colchester
area, Sophie has sent me your details so I will send you an Email, mean while take care and look forward from hearing from you.
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