Even so, she is resisting having the VAD substance in the house. “I don’t want it here with the kids. It’s already been so hard for them. Every time I have a new prognosis, they have had to deal with that.
“And part of me doesn’t want to jinx it. My friends say I’m a cat with nine lives – I’ve outrun this thing for ten years and I don’t want to subconsciously tell my body I’ve given up.
“But the reality is, it’s only going to get worse. The confusion, the seizures. I don't want to get to the stage where I look at my children and don’t recognise them.”
"My ideal death would be at my Dad’s farm, sitting on the grass, looking out over the fields and having all my family around. But do I need to be really sick to do that? I don't know. I really don't."