Tuesday 23rd November

Where do you go to, my lovely
When you're alone in your bed
Tell me the thoughts that surround you
I want to look inside your head

The Marsden burn up more miles between Sutton and Dulwich and things change again. A little bit more control in a situation I have never been in control of slips away - Rose is put on a syringe driver which drips a cocktail of controlled drugs into her twenty-four hours a day. It means for the first time the community nurses have to come every day to change the driver. It's day two and already I hate it. It's an inconvenient time to have control issues. Now on general anaesthetic levels of ketamine as well as a startling selection of other drugs Rose is still heartbreakingly, horribly aware. Unable to move a muscle and barely able to croak out a few words but she can still cry and call out for us and one or other is continually attached to her hand, continually telling her how much we love her. But I can hardly meet her eyes now for the bewilderment and fear that lie there, for the shame of how completely and comprehensively it feels we have failed her.

Where do you go to, my lovely. Hopefully crabbing, swimming in the sea, driving Andrew's boat, throwing sticks for Ben, riding your bike. Anywhere but here really.