advanced directive

Many visits today, but not much help on the horizon. The district nurse clearly thinks Im in an n stage, so wanted me to fill out a form for ends of life care. A  disagrees. Why, I asked him. I don’t know he said. A feeling.

I requested a DNR form from the GP when he came to take a culture of my mouth and throat as I clearly still have a candida infection and am possibly not on the right drug. That was somewhat of a fight, but G was insistent on the phone, then they insisted on talking to me. But at least that was done. And at least they did come to do that. The palliative consultant rang and put the ixnay on sativex. She said she was involved in the original trials for cancer patients and in her view, and the trial showed,  it had serious unpleasant side effects with little or no benefit. I think she would have prescribed it if I had insisted. But whats the point if she thinks it will just make my life harder. I think she does understand my problems with drugs. She has prescribed pregabilin at a half dose. To take at night. But I can go off it if it affects my cognition.


I gave in and read the papers today, even though the surreality of the news is like treading a nightmare. One story, about a Trump supporter who menaced a plane full of passengers, asking if there were any Hilary Bitches aboard. I wish I’d been there. Yes I would have said. Ugly Hilary Bitch right over here. And faced the asshole head on. The report said Delta apologised to passengers for allowing the man to continue flying, and returned their fares and banned the man from flying with them again. I suppose if Id been there living out my resistance fantasy, I might have been banned too. Maybe not. Maybe the full shock to the earth’s axis hasn’t sunk fully in yet.


So I’m tired. I did manage part of a supervision even though my voice is gone. And I took Chair’s Action on a proposal for GFSS. i downloaded another book. But not sure I feel like reading it today. I managed some soup and G sou cheffed my suggestion about how to make a good grilled cheese sandwich – of which I managed a bite. I have to be careful and think about what I’m doing so as not to choke. But at least this is normal food. I wish they sold cool whip here. I could mix it with jello and tinned fruit like my mom makes. That would be nice to eat. Strange the things you end up wanting in extremis.

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