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MDS Info
Hi Cheryl,
I am glad you have been able to post your concerns about your Mom. I must admit to being so confused when my husband was first diagnosed back in April of this year, that I could not even begin to figure out what questions to ask. So you are not alone.
My knowledge has grown very, very slowly, but I am becoming more comfortable with what I need to know about his condition. I had never heard of it and knew nothing at all about it. It seemed so very complicated, and it is actually. It seems that each loved one or patient has questions that are different because each case is different. My husband doesn't read anything at all about it - too frightened I think. You know, I think I would be too frightened too. He kind of depends on me and the doc to tell him about new meds for each problem he has. He doesn't have an MDS specialist, but the doc is an oncologist and hematologist and the big center he goes to does have a number of MDS patients.
I expect, as you said, that as your Mom sees that you want to learn more and be there for her maybe she will gradually become more comfortable talking to you about it.
The patients must feel so very differently than we do so I try to gently give out info I have learned as he asks or seems very down. I love him so much and want to be there beside him when he needs me, but so many decisions are his and I don't want to push, though he does at this point find it easier to talk about it.
This is getting so long, but I just wanted you to know you are not alone and that this is a very slow learning process for all of us. I hope you can feel okay asking questions. The people here are very knowledgeable and kind and know a lot more than I do. I do understand how confused and lost you may feel on some days, but it will get easier for you as time goes on.
Beth
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