Upshot of consultant visit

We enjoyed a long chat with the palliative consultant yesterday. We discussed various aspects of Pads' antics and health. One of the questions that had been on my mind is whether increased doses of pain relief will result in a more dopey patient. At this stage, increased sleepiness is due to tumour activity rather than the already high levels of analgesic. At the moment we are on another plateau where the pain is under control unless something else is going awry, for example, he needed a dose of breakthrough last night. Today it looked as though the injection site was starting to get inflamed. This will reduce the effectiveness of the site's ability to absorb the drug. So the needle, having lasted well for a week, was changed this morning and hopefully that will keep him comfortable again - so far so good.
If you're PEG/liquid fed for years, apparently, this can make your bowel 'lazy'. When we were at the caravan in Porthcawl recently it was clear enough that the Jevity was not agreeing with him and so we abandoned the nightly one litre 'complete diet' in favour of letting him eat whatever he wanted. That amounted to everyone's dream diet of (MacDonalds) donuts, battered sausage (from the Fisheries chipper, Birchgrove), KFC pop-corn chicken, popcorn (salt), naan bread, Moams, chocolate and, last but not least, sweet tea. Of course, this is a bit fatty and that had started to disagree with him too. So, with P's agreement, we're branching out with a return to some old favourites: banana bread (mum's non-fangled recipe), scrambled eggs on toast (made by dad), Cheerios, dried apricots and Shreddies. It is hard to over emphasise how significant a factor diet has been for the whole of his treatment. Tonight he also managed a lump garlic bread and a lump of chocolate.
Pads has had a steady stream of visitors again this week. Today we were delighted to welcome the Mrs Highams who were chatting with Pads about the need to challenge the young people about their souls with the question, 'are you saved?' There can be too much 'pussyfooting' when the need is urgent.

The need for feed

After a bit of a trial last week, and we've discussed it with our nurse, we're putting Pads on a 'see-food' diet. Basically the Jevity (liquid PEG feed) was not really agreeing with him. So tonight it's another battered sausage for tea! The only thing we have to keep an eye on is the fluids.
It's been quite busy in the house with Ann, the play therapist visiting (and getting soundly beaten at Uno), the tutor (who watched some DVD with him), and Jane, as well as a few others. I was buried away in some urgent marking most of the day.
We've been taking quite a few calls and messages following the update I posted on Saturday night. Thank you for all the interest and concern!
Thankfully the pain has been kept at bay so that he's not needed any more breakthrough pain relief and we have plenty in stock in case it does come back. There will be another 2 days of this dose of steroids and then he'll have to be brought down off them in steps again. So he's thinking positively about going to 'Hanes' (History) on Wednesday and even the LATCH Brain Tumour Support Group meet on Saturday afternoon.