Hello - newly diagnosed and feeling isolated

Please post here your experiences of MDS as a patient, carer, family or friend

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Posts: 23
Joined: 19 Mar 2013 17:25

Re: Hello - newly diagnosed and feeling isolated

Post by Claire » 25 Mar 2013 19:30

Hi again!

Janet Green - I hope Ken is doing well at the moment. Thank you for taking the time to reply to me.

Chris - LOL!! I have spent a good part of the last 3 months since diagnosis thinking I was going mad but thankfully was only momentarily confused by the transplant reference!! :lol: For a brief moment I thought I had not fully understood my last consultation! I will read up on adding a signature to save any future confusion. How funny that so many of us have the same names!

Anyway - I love the idea of refusing those irritating 'air-kisses' in future. I have a valid excuse now because I have never actually liked them anyway. I have always been a little OCD about hygiene anyway so that is a useful attribute to have now. A particular dislike of mine is door handles!

I really have enjoyed reading the newsletter - it must take up quite a bit of time. I like the way that information is shared with the reader - it is helpful without being terrifying.

Thank you all

Claire x
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex

Re: Hello - newly diagnosed and feeling isolated

Post by chris » 03 Apr 2013 17:51

Hi Claire

A little bit of OCD on the door handle front will do you no harm - just self-protection! Re the social kisses - it has made me realise how "fake" some of this is and, frankly, I'm really glad to have the excuse to opt out!! I offer close family and people I really like a hug instead. Others, I blow a kiss. They get the message!!!So there! MDS does have some benefits!!

Hope you are enjoying the school holidays and feeling relaxed and a bit less anxious now?

I felt even more flattered about the Newsletter as an Australian Leukaemia group were very complimentary and want our permission to reproduce some articles. As I commented to Sophie "Strewth, mate!! We've gone viral Down Under!!" (Hope your Aussie accent is good!).

Take care

Chris. (F) Age 69 (2019). 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
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