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High Risk Myelodysplastic Syndrome: What to Expect?
Blood Cancers & Disorders | Last Active: Dec 5, 2025 | Replies (32)Comment receiving replies
This business of not influencing the patient's decision––I find this moment-by-moment challenging. I don't want to inflence my partner's decision; yet, at the same time, I find myself at a loss as what to say when she turns to me and asks, "What do you think I should do?" I'm torn between not wanting her to feel all alone as she considers her options, but say the right words so she understands she has my support no matter what she decides.
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I get it… within the last 3 years my father passed away so the concept of facing mortality has been a fairly common topic and Mom isn’t afraid to use real words or hide from things and I am her daughter… very matter of fact….This has been just another conversation for us..
I knew she would not shy away from a decision once she had all the facts. At one point, she asked what I thought she should do. If a cure is not a part of the equation, I doubt I would have any of it. Remember she is 88.
I spoke to a husband whose wife had treatment for MDS for 12 years. It wasn’t all pleasant but she was younger and still had some “firsts” she wanted to experience with her family… Some treatments were experimental, but 12 years… just wow!!! That being said, I don’t know at what stage she was diagnosed nor at what stage…. Just that there were lots of milestones along the way regarding “firsts”.
I think it’s all in the gut… this lady knew she wasn’t ready; Mom says she’s ready for whatever.