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Oh Jules,
I feel your pain when it comes to being in this by yourself. I told one of my friends of 22 years that I had MDS and that it was a form of cancer. I deliberately didn't go into details of symptoms or treatments etc.( she knew I had transfusions all the time but didn't know why) I know people don't like people to talk about illnesses, so I didn't. It made no difference. She hasn't called in or phoned me since I told her. I know she probably doesn't know what to do or say, but, I miss her, it was like losing a whole extended family because I followed her grandchildren growing up in photos and her anecdotes.
I also have elderly parents and I'm constantly trying to cover up when I feel tired or sick. It's all very lonely.
As for trusting your doctor, it's a defence mechanism. You are so dependant on them (literally your life) that you need to trust them. I think any illness is a lonely thing, but you grow as a person and become proud of yourself for coping and beating this thing.
I wish you all the best.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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