Partner recently diagnosed with MDS - scared

Recent diagnosis
1

Hello,

My partner (52) has recently been diagnosed with Myelodysplastic syndrome (MDS). We have two preschool aged children so I couldn’t attend his first appointment with a specialist.

Currently he’s on watch and wait. I have no idea of his risk levels and his next specialist appointment is this Wednesday and I’m going to get to attend. At the first appointment, he was told he might get offered a stem cell transplant in 2-6 months depending on his white blood counts.

I’m petrified of the whole thing. He’s a stay at home Dad and we’d have no income if I were unable to work. The girls need their Dad and so do I. Superficially he seems fine, so the idea that he needs risky treatment which could kill him is incomprehensibly scary.

He doesn’t want to talk about it much but the tension is getting to me, especially when anyone mentions the kids growing up or long term plans. I feel like shouting that it’s stupid to assume he’ll be here.

Anyway, the worry is super exhausting and I feel I need to be the strong and reasonable one (as always).

I know he can’t help it, but I feel so let down. We had plans to do up our house, raise our family and get old together and it’s all going out the window.

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Oh @WorriedJenny welcome and thanks so much for your honest post.
You obviously chose the right name for yourself and I think it is very natural to feel terrified, I know I did when I was first diagnosed with another blood cancer at 53 yrs old.
I am now 74 yrs old and my 70th birthday was my best ever…
Don’t forget your whole world has been thrown up in the air and you are in complete shock with thoughts and feelings whizzing around, some logical and some illogical.
Perhaps you could sit down with your husband and write down all your fears, questions and practicalities for Wednesday’s appointment.
If not, ask him if you can ask them.
My husband is a head in the sand sort of guy, we are all different and there is no right or wrong way to take a diagnosis.
Worry is so, so exhausting, you are right, but very natural, so really look after and be very kind to yourselves.
Please do let us know how you get on.

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