Monday 4 August 2008

The past 5 days have been tiring for both Peter and I.

Wednesday afternoon he had the gastroscopy (with dilation of oesophagus) with Dr Thomson and had no ill effects apart from a bit of pink sputum afterwards. Apparently Dr Thomson was able to dilate Peters' oesophagus some more but not to the extent that he can go back to eating anything much again. Peter is too frightened to try to swallow anything at the moment so I have made some chicken broth which I hope he will have a few sips when he feels ready.

On Wednesday we were also changing Peter's pain medication from the Hydromorphone through the syringe driver to Fentanyl patches and there was an imbalance in the pain relief so Peter had a disturbed night and was up 5 times which meant I was also up and we didn't get much sleep. The pain medication also gives him a heightened dream state and so he spends a lot of the night talking to people who are not there - which is a bit disconcerting for him but also doesn't make for a restful night for me either.

So Thursday was tiring from the sleep deprivation. The patches had also come off as Peter has been having problems with uncontrolled body temperature since the 2006 surgery excised half his thyroid, cut the vagus and sympathetic nerves and also took out the tumour under the right collar bone. What this has meant though, is that he is cold on his right side and normal to hot on his left and to warm up the right overheats his left and leads to sweats. The sweating then undermines all dressings and patches in a day rather than the several days for which some of them are meant to last.

Anyway, I think we have found a place (right arm) where it is cooler than the rest and which will mean the patches stay on the skin. If this doesn't work in the long term then we will have to go to an oral solution which I will feed through the peg tube.

Peter was less and less disturbed as the nights wore on but had a very bad one on Saturday night when I had to give him several "break through" medications into the peg tube.

Also of concern, we tried a tiny visit to the outdoors yesterday afternoon, but Peter fell off the roller walker while not having the brakes on and trying to move out of the breeze. He fell directly onto the cement of the front porch near the front door on his right side - lower ribs/waist area. He now has purplish-red bruise there and it was deeply distressing for both of us - as it all happened in a couple of seconds. I was able to lift him up and get him into bed but it was stressful and we were both shaken. He forgets that he doesn't have the strength and that he has to use the brakes. No ill effects this morning though (apart from a little more pain) and the palliative care nurse has seen him and his bruising and is not concerned. So that's a relief, but somewhat shakes Peter's (and my) confidence about trying to get him to walk or go outside.

I hope this week that the pain medication situation is under control and that I might be able to get a few hours off to do a couple of things outside the house. Unless more medical things intervene I have lined up the lovely pall care volunteer we have been allocated to come in to sit with Peter for a few hours. So that should be good, as Peter is understandably more anxious not to be left alone following the fall.

Apart from all of that, he is spending 95% of his time in bed, asleep much of the time.

Tomorrow it will be 4 weeks since we started him on full adult fluid feeding and I can see he looks so much better. Although he says he feels distinctly unwell regardless of how he looks.

I also gave him a haircut and trimmed up his beard on Friday (thanks to the trusty Big W hair clipper set) and he has shed about 20 years from his face in a few minutes. It's amazing what removing some of the grey and bushy hair has done to make such a difference.

However, his right arm is losing more strength and condition and he says it is full of pins and needles and he has lost the sensation of anything but pressure in that arm and hand - a very distressing thing and one which undermines his ability to function independently. Bizarrely, his right leg is stronger than his left so he has this asymmetrical strength which puts him off balance as well.

Hopefully this week will have less in the way of medical interventions and more rest and recreation for Peter, as I need to get the opportunity to try to build him up again both mentally and physically and none of that gets to happen if there's a lot on the schedule.

On other news, my mother is in her final week of radiotherapy and will then see the professor some weeks after that. So far, she reports, all has gone well but I haven't had the opportunity to see her so I can't verify that. However, she sounds good on the phone and her voice is usually a give-away if there's something wrong.

Au revoir for now - Leanne