Thursday, May 21, 2009


It went well – significant progress was made in lots of ways. Pads is adamant he doesn’t want a PEG so is persevering with the NG tubes. To do this he’s making a list of his requirements. LOTR music, sedation, Jane doing it, not too fast, mum and dad holding his hands, a burger, lying on his own bed. Most of these were met. We argued that having the burger after the tube would be a bad idea as it involved travelling while under the influence. I had mentioned to him that he may be able to think rationally now, but that, when frightened, he ‘loses it’ and starts to panic. This happens to the best of us, but I meant that, with the things we’d agreed, we’d still carry on fitting the tube even if he started to say no. I felt this was an important bridge to build since the time he asked us, ’why didn’t you believe me when I said I didn’t want it?’ the other week. We sent the others off to get chips so they didn’t have to hear any howling. In the event he was very calm – at the peak of the sedation effect, but still, with his music on, and with his agreement, we approached. He didn’t say ‘no’ at any time although he did struggle a bit at first – agreed to let mum hold his hand and then me too, in case he felt like struggling too much. It was clearly unpleasant, with some gagging. Jane tested that it had gone down far enough but it hadn’t and the syringe came apart in the process (to check it’s gone down far enough they try and suck some fluid up from the gut and test for Ph). So it wasn’t all that straightforward but he was willing to push it down the last few centimetres himself – which was major progress. We all felt that we could go through that again. Having had one McBurger today, we asked if he’d be willing to join us for pizza and chips: at 6pm, with the night wearing on, we were glad he agreed.

Rhys is finishing his course of treatment today with a spinal injection – I think the hangover will last a while yet though. For Pads, Al worked out the other day that the last week of his 8th cycle is the first week in December. Not trying to show off or anything because Rhys is my new best pal having donated 2 big sacks of wood for my chiminea :-)

1 comment:

Susanna said...

really pleased for you all that it was a bit easier.