Hello. Newly diagnosed!!

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LLDY14
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Joined: 03 Jun 2021 16:18
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Hello. Newly diagnosed!!

Post by LLDY14 » 03 Jun 2021 18:25

Hello,

Firstly I would like to say thank you for taking the time to read this post.
I am a 36 year old single mum working full time and unfortunately I was diagnosed last week with MDS. I have had a lot of information thrown at me but have yet to share this news with my family. Does anyone have any useful information or any advice on how, when, where and what I should tell my family? I have a son aged 13 and me and him have been through a lot, we are very close and I want to be able to tell him or show him, that MDS is a cancer but not a death sentence.

Thanks again. 😊
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hello. Newly diagnosed!!

Post by chris » 30 Jun 2021 22:31

Hi there. Sorry for not replying sooner. June is a crazy month for family and friends - 11 birthdays and 1 wedding anniversary!

So sorry to hear of your MDS diagnosis -and at such a young age. As a single mum and working full time, it must be especially hard to find the time to read and digest all the information you’ve been given. I presume you have joined MDS UK as a member? It is free and you’ll get a very useful welcome pack, containing a booklet which should answer all your questions. As you’re working, it might be hard for you to join one of our patient support Zoom meetings online as they are usually in the day? But if you did have a day off, it might be worth registering if there is a convenient date?

Telling children is a difficult task but I think that generally, it is best to be open and honest with them. Your son at 13 is old enough to understand and you are close so you need to be reassuring as your own approach could be a model for him.You sound as though you have been very thoughtful about this already. Will you be having any treatment? If so, you will need to explain to him what that entails and how it might affect you. If your MDS makes you fatigued, you’ll need to let him know how that feels for you and if it limits what activities you can do with him?

Have you seen the little cartoon, Myelo’s Hope, on this website? When you are ready to tell him, that might be a simple and reassuring way to break the news to him?

As for adult family members, again the cartoon and links to this website might help? It is a lot for people to take in as most people will never have heard of MDS! It will be very important for you to get good support from family and friends. Not sure where you live in the country but we might be able to arrange a buddy support with other young people with MDS. If you think that would help, you can private message me with your contact details and I can try to arrange this.(I currently coordinate volunteers with MDS UK and am a Board member and a Local Patient Support Ambassador in Essex).

I don’t know if any of this helps but I wish you well with this. Let us know how it goes.

All 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.
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