Hi all. I’ve just joined the group as I need some support. Currently now for advice on communicating with the hospital but I’m sure mentally in the coming months.
My 35 year old sister is slowly losing her battle with a rare cancer called Epitheloid
Haemangioendothelioma - Low grade malignancy. I say losing her battle - we just don’t know. The communication from the hospital has been patchy at best. Is there a way to get the truth on the situation even if the answer is they just don’t know? We have her back home in ‘recovery’ however she screams in pain every minutes of everyday with a leg the size of a tree trunk. It’s not fair and it’s 100% not recovery.
The district nurses have asked for her oncology treatment plan - there isn’t one. Is this normal? We have so many questions but I just want to know if there is a way to communicate with the hospital without my sister having to be there?
your support would be appreciated.
T
