Newly diagnosed - companion sought

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CHNG7
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Joined: 21 Apr 2021 14:31
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Newly diagnosed - companion sought

Post by CHNG7 » 14 May 2021 18:40

Hi all, I'm recently diagnosed with low risk MDSMLD -20q. Not even sure yet if that is the right terminology but I'm sure I will learn the lingo. I'm using this forum rather than Facebook as I wish to remain anonymous for the immediate future and it is difficult to operate Facebook via an alias. Only my husband knows about my diagnosis because I am currently an extremely fit and well 59 year old on 'watch and wait' and don't yet want to 'become' the illness although it is of course very real and I'm having counselling about coming to terms with it.

I was wondering whether there is anyone in a similar position in the East Midlands who might like to discuss their situation and have some companionship on this trip? It seems there are so many forms of the disease and everyone's experiences are different, I don't want to join the wrong 'club' by accident!

Thoughts welcome...
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Newly diagnosed - companion sought

Post by chris » 19 May 2021 08:59

Hi there. Although I’m not in the East Midlands, I’m replying just to say Hello and respond to your situation.

As a local Group coordinator supporting people with MDS for 9 years, I’ve met a few people who want to keep their diagnosis private -for a variety of reasons. So long as you are on watch and wait and don’t need any treatment, this is quite achievable but I feel it does produce its own difficulties the longer it goes on. Obviously, it becomes trickier if treatment is required further down the line and more “white lies” have to be told!! As you are missing out on wider support from family and friends, I’m glad to hear that you are having counselling to help you come to terms with your diagnosis. I hope you are finding this helpful?

As MDS is so variable, it’s easy to feel you are in the “wrong club” as sometimes, with even rarer sub-types, it’s hard to find somebody with exactly your symptoms/ prognosis. But let me assure you that you are in exactly the right club as we are the only organisation that focuses solely and wholeheartedly on MDS! Other blood cancer groups cover such a range of diseases that it’s harder to match up with people in similar situations.

I don’t share your disease classification but do share similarities in that I was fit and well when diagnosed at age 58 and have been on “watch and wait” since 2008! Because my disease kicked off in a very dramatic and scary way, there was never any option NOT to share with others -although I wasn’t formally diagnosed until a year later!

I presume you have joined MDS UK and received information materials which will help with your understanding of the disease? You may have seen some Patient Support meetings held online via Zoom? It would be perfectly possible to join those meetings with your video turned off and your name changed to preserve your anonymity-if you thought it might be helpful to hear from others with MDS? For me, going to local patient support meetings was critical in coming to terms with my disease but everybody is different and with your husband’s support and counselling, you’ll get there on your own terms.

I hope you receive this response. Keep well.

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.
CHNG7
Posts: 2
Joined: 21 Apr 2021 14:31
Contact:

Re: Newly diagnosed - companion sought

Post by CHNG7 » 19 May 2021 11:11

Hi Chris, thank you for your response and yes, hopefully I will know the right time to 'go public'. I'm planning to join one of the zoom cafes to help make sense of it all and I feel I'm getting the support I need at the moment from MDS UK and long suffering husband.

Looking forward to meeting more of the club in due course.

Regards, CH
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Newly diagnosed - companion sought

Post by chris » 19 May 2021 23:51

Hi there. As well as the Zoom cafes, you might also try one of the Regional patient support meetings? Although they are nominally for people who live in those areas, at the moment they are open to anybody who wants to attend. They are led by a local Group coordinator -where there is one. There’s a Northern Ireland meeting coming up and an Oxford one. Details in the e-newsletter coming out tomorrow. Your “long-suffering husband” (!) is also most welcome to attend. There are often people attending who aren’t the ones with MDS as sometimes their other halves don’t want to know all the details!! We’re all different! It takes a while to get used to the terminology and the arrays of initials and to come to terms with what MDS means for you and how you will approach living with the disease. Massive learning curve -but hopefully we can help along the way.

Take care and stay well.

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.
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