I've written before about my fucked up (& mostly dead) family.
Mumsnetters helped me hold it together over Christmas. My dad died a year and a week ago. My sister died a few years ago and it's the anniversary of her death today.
I'm severely disabled, started to get ill 5 yrs ago.
The whole thing has been a living hell as my parents have shrouded all family history in mystery and silence. And deliberately lied about stuff that would have helped me and my sister, and my dad too. My mother has been particularly cruel and that's what my other thread was about.
Just had a call from a diagnostic service I gave a tissue sample to a few years ago when I got my first diagnosis. They've found a genetic abnormality which might mean I have something different from what I thought. It's in the same ballpark but from first glance it's more serious. I'd always hoped I had the mildest type of the original condition I was told I probably have. But this new one doesn't seem to have a benign type.
I don't know why I'm so shaken up. I knew everything was blurry and best guess as I have no access to my sister or fathers medical records.
She asked me if I could get my mother to give consent for them to access my dads post mortem. And they're hoping there was a saved tissue sample so they can run tests on it to see if he had the same genetic variation. It would help a lot in how my condition is managed and treated. And my little boy.
I will try and have asked them to send a letter explaining why they need access. But my mother won't. Just like I was blocked before. I really want to leave it all behind but I can't.
Oh god.
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Shaken up. New news & bad timing.
139 replies
MiscellaneousAssortment · 13/01/2016 13:27
OP posts:
itsmine ·
14/01/2016 10:41
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