It started at Maggies Centre this morning. Someone at our Friends and Family group mentioned that they didn't like the term remission....."Remission??? You don't like the word remission??? From where I'm sitting I love the idea of remission! I can only dream of anyone using the word remission around W, because it ain't going to happen. There is no remission, just this bloody awful rush headlong into a wall I can see coming..."


Later another rant featured my favourite subject - the District Nurses. "What ARE they good for? I asked Petal. First they can't change an intrathecal until they have two weeks training. Then they can't carry drugs. W is completely dependent on friends who can collect from our pharmacy as needed. They can apparantly only visit the house in twos, and have yet to show one single ounce of initiative if needed. Let me illustrate:-
Intrathecals late in arriving from the hospital? "Yes", they say , "you'll need to find out why".
Incorrect prescription issuedby our GP? "Yes", they say, "you'll need to get a new one"
W is having a suspected heart attack? "Yes", they say, "you'll need to phone a doctor"
Can you see my point here?

My point as to their general uselessness was shown at the hospice today, where in a room of four district nurses being trained in intrathecal changovers (yes, yes, of course training is ongoing....trained district nurses cannot train others. All training must be form the hospice) W needed a backup injection and guess what? No they aren't authorised to do that. In a room of four nurses at the hospice today, I had to administer the drugs.

I kid you not.

So when I met the Doctor at the Hospice today I was in fine form. Key questions were asked
  • Since W's cancer is so rare, do you really know how to treat it?
  • If you do know how to treat it, why is he in such pain he can't talk for most of the morning....?
  • What level of pain do you consider reasonable?
Coming back in the car W checked, "you were civil to them weren't you?"

Yeah, whatever, I got them to agree there is a PROBLEM.