Tuesday, June 9, 2009

another good meeting with the consultant

Today's hearing test showed that Pads hearing may have begun to be affected by the chemo, but this is not a major concern and won't prevent the next cycle going ahead as planned.
After that, we had a very good meeting with the consultant who wanted to run through Padi's nutrition options. Just starting a conversation with Pads about this is difficult because he quickly becomes emotional. It's like you just introduced him to two of his worst nightmares. But he was very brave and stuck to the task. The consultant assured him that she was perfectly willing to continue with the NG tubes if he wanted (this is right in line with the Welsh Assembly Government's '10 Entitlements' that was on one of the walls by the reception desk), but that he needed to know and be involved in a discussion about the options. At one point he tried to broker a deal about agreeing to go for the PEG so long as he didn't have another needle for the anaesthetic. Ally and I heard it, but the others in the room didnt quite catch it or else couldnt believe he could be that decisive without more emotion or discussion. Anyway, the floor was completely open for any questions about the procedure. On paper, there is no comparison between the two, given the amount of stress that NG tubes have been causing.
Pads had been worried about sleeping on his front - there was no reason to suppose that this would be a problem, the tubes are very flexible. In any case, he's not sleeping all that well the moment. With the PEG, there is no visible sign of a tube, whereas the NG tube is very apparent.
Pads had been worried about needing a further operation or two, but the consultant confirmed that the PEG was a small operation, and that it could be removed when the port is taken out. Added to that, the discomfort of having a tube running through your head; the aggravation of symptoms when you have a cold; the stress surrounding vomiting (i.e. something that happens quite a lot to chemo people); not having the NG tube in gives him 10 to 20% more joy in life in general; not to mention that there will be no need to pass another NG tube. Hopefully he will look back on this and wonder what he was worried about. Thankfully, I was able to break the ice a little in the meeting by asking, 'does it matter if he's got an inny (navel)?' - it didnt.
So the consultant is going to look for spaces on lists and we'll watch this space - the only condition is that he's not neutropenic.
He's probably getting some chemo fatigue by this cycle, and, with the broken sleep, it's hard for him to get up in the mornings in time for school. But he managed it today, fair play, only to have to bail out by 11:30 - whacked.

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