900

We think we can do something about the eye pain by covering them with a damp flannel. This provides some relief by cooling and blocking out the light. This morning his first yelp was for neck pain though and so a fentanyl melt went in at 6:50am followed by a diamorph dose at 7:20am. While I was writing this he needed another melt at 9:40am. That's after a hike in the background dose from 720 to 900mg yesterday. These step changes in diamorph have not ruled out the need for breakthrough. What must such episodes of pain be like that they can cut right through all that medication?

We're now taking it in turns to sleep in with Pads which is only marginally different to being in our own room but it does allow for a more instant response and possibly more settled sleep for the other. There's not a lot of space in his room but enough for the SynMat camping mattress I got for Ally years ago but has only now slept on - it's hardly any different to our normal bed (which has a memory foam topper!)
We've put everyone on notice, smalls included, that we do not think he's got long left... but of course these things can defy our expectations.

Back from Porthcawl

We've returned from a caravan in Porthcawl, just 40 minutes away. The caravan was organised by LATCH, provided by/in memory of Emyr Owen who passed away in 2009 (you can buy his children's story book online to help support LATCH). Being near home was important in our being able to go 'away' at all at this stage of Pads' illness. It allowed Ally to pop over to check things out (especially the heating!), make the beds, etc. There was less risk with the shorter journey itself and knowing we could 'abort' and return home easily if need be. We curtailed our time away, for various reasons, by traveling up on Easter Monday, coming back yesterday. Pads was reluctant to part with home comforts as we approached the time of departure but the caravan was roomy enough for him to have his own space, which he used almost as much as he would have at home. The caravan and its thin walls made it feel like we were more together.

More photos on Flickr.
Thankfully the week passed without incident. The weather was bright but cold, and colder still in the north-easterly breeze, so we made glad use of the caravan's efficient heating system. We kept things simple, relaxing with a book, game or DVD. Moli's been trying to put in 4 hours a day on GCSE revision too. On Wednesday the siblings shared a hot-tub at Ruth's. Just seconds from the beach, it is easy to imagine the place teeming with families on a warm summer's day. In contrast, following one of the stary nights we took a dawn walk on the sand. Removing my deck shoes to cross an especially wet patch I noticed each step made a sandy impression through a layer of thin ice! We topped off the holiday with a cinema trip on the way home at McArthur Glen, Bridgend. Just mentioning this topic in conversation outside his room was enough to arouse his excitement and he was up and dressed by 9am! To wile away the hours we wheeled him down to the Trecco Bay sea front. This was enjoyable if wearing, and he returned to bed until we left at 3pm.
Pads called for a 'melt' at 6:15 this morning and had another 3 in fairly quick succession. Each melt is enough to ease the pain for a while but this many cause him to become slightly uninhibited, often with comic effect (e.g. starting to whistle Christmas carols).