The weirdness continues. Robyn was going up to London to spend some time with a friend. I was quite ill today, so I stayed in but I was due to have my 'pain conference' at ten past nine in the morning.
I've been in a lot of pain for the last five months. Some of that there's no cure for; my spine was collapsing again and that hurts like hell. Move just a little the wrong way, sneeze or cough, try and stand up and I was screaming. Try and lie down.....screaming. Driving the car over a bump in the road....screaming.
It's so bad there's no cure for it - in 2015 when it happened the first time I was in Wexham Park hospital for a week, where they didn't know what they were doing. I was having intravenous morphine and I was still.......screaming.
Now I've finally got the OK for infusions to pull back calcium onto the collapsed vertebrae and I'm ok again. I'm even back in bed.
But I've also got bad pains in my hips and pelvis, my right knee and shin. It's just plain miserable and every so often I'm in agony. I'm not sure whether it's the tumours or a side effect of the chemo but that doesn't really matter a lot. It hurts to walk.
Every body is telling me I need to take more painkillers and they may well be right. But I don't see it that way - I need to know how I am, I need to be able to think for as long as possible, I need to be awake to be alive.
Anyway I got a letter from the G.P.'s to make an appointment for a 'pain conference'. I phoned up a month ago and was told I'd have a telephone conference - I'd get a phone call.
Except this morning I got a reminder text which I immediately recognised meant I was supposed to be at the surgery.
Someone messed up.
I phoned early in the morning but it was too late to do anything but cancel.
So I asked to make another appointment - they aren't making any non urgent appointments......at all.
They are that busy.
I was a bit depressed about all this - I may want to keep control of the painkillers I take but I could have done with a bit of advise. And I have a good relationship with my G.P. and the last thing I wanted to do was miss an appointment.
So I spent the day indoors, feeling ill and hurting and feeling very sorry for myself.
Meanwhile someone feeling even more sorry for themselves jumped onto the railway line, cutting all the trains that Robyn needed to catch to get home.
It got so bad that Sydney the Grumpy cat (who hates me) actually came into my room twice to ask; "Actually who is going to get my dinner?"
Then she left.
Robyn got back home eventually and then at about 8 pm my poor doctor rang me, which was really kind of her.
Except by then I'd forgotten everything I'd wanted to ask. The doc actually told me I should take exactly the meds I wanted to.
Like anyone is ever going to believe that.
How can I explain?
I've been watching the Tour de France, which I've done since I was a kid.
Mark Cavendish is a very courageous sprinter - it's a specialist discipline which involves a select band of cyclists who spend the entire days racing edging themselves to the front at the end of a very long stage. Then they race each other over a relatively short sprint for the line at very high speed.
This year, Cavendish got pushed into the barriers by a rival sprinter who was disqualified as a result. 'Cav', however, had a really bad crash at high speed, breaking his shoulder amongst a number of other injuries.
I listened to an interview with him, where he described how he was back on an exercise bike within two days.
With a broken shoulder!
He described how professional cyclists stop the painkillers almost immediately, so they can train again straight away to stay fit. They stop the painkillers to know exactly what they can and can't do. The pain tells them.
Which is exactly how I feel about it.
(a don't stop till you drop production)
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