Some good and okay news

What a week we have had! But then, on recollection, I seem to say that each week. Peter's condition worsened on Monday and by Tuesday when we went to see Dr Yip, the oncologist, he was in great pain and feeling pretty poor all round. Dr Yip gave us another script for antibiotics as it is clear this chest infection is more stubborn.

However, there are 3 pieces of good news to gladden my heart.

The first good news is that the blood results show many signs of improvement on a range of the results.

However, there is poor uptake of thyroid medication. This can be attributed to some of the other things he is taking which interact with the effectiveness of the thyroxine and also that I was told to give the tablets to him first thing in the morning, which I have been doing religiously, only to find, when I found a product statement in the box in the fridge that I should have been giving him that either an hour before food or 3 hours after. So giving it to him as soon as his feed had ceased in the morning was not the right time at all and probably inhibited his uptake of the drug. I have since amended that practice and Dr Yip has increased his intake to 100 mcg so we will have to see if both those things make Peter feel better or not.

Starting on the antibiotic again on Tuesday afternoon has started to make a difference to the infection. Dr Yip also said the CT scan showed a large amount of liquid on the right lung.

The second piece of good-ish news is that the CT showed the cancer tumours are stable at the moment and so no extra chemotherapy is currently considered, especially with this infection. I had hoped that the news would be that they had shrunk or gone (that's a faint hope I know), but at least being stable is better than the verdict that they have grown.

The third piece of good news is that since I last weighed Peter a few weeks ago he has put on over 2 kilos in weight and is now about 70 kilos. Needing new batteries for the scales, and forgetting to buy them every time I was at the shops, meant that it's been a while since the last weighing. I can see there's slightly more of Peter now and he looks less malnourished.

Other good news is that Dr Pacl, the pain specialist (and gem beyond price or as Peter says "at last a competent doctor!") has increased his pain medication to 200 mcg of Fentanyl patches every 2 days and has given us a couple of practical hints to assist breathing. One of which is assisting already - "Breathe Easy Nasal strips" to assist in keeping the right nasal passage open. What magic!!

On the pain side, this is continuing to be a battle. Peter is back on Lyrica, an anti-epileptic drug which has been knocking him for six - hallucinations, unsteadiness on his feet, groggy and slurring speech to name a few of the side effects Hopefully these will get under control and Dr Pacl has knocked the dose in half for a few days to see if that helps.

The problem with this is that it has set back his exercise and physical improvement plan as he is so unsteady and groggy that he's not safe on his feet. He has also been having continuous and involuntary body jerking which is worrying in terms of perhaps falling out of the recliner chair or bed.

The issue with the hallucinations is that while some of them are amusing (after the fact), some are dangerous. On Friday night, we had a really bad time. Instead of Peter being up about 3 times in the night and needing some assistance, on Friday it was over 8 times and some were distressing. On one occasion I heard him get up and saw him walking towards the bedroom door with the feed tube still attached and the possibility that the IV pole would fall on top of him and the peg tube be ripped out of his duodenum. I yelled "Stop, stop, stop" and he came to in time for me to get him back to bed before any damage was done. He told me he had to get through the doors as there was a machine there for the French and German governments that he had to see to. Earlier, I heard something happening with the IV pole and found him grabbing it and it leaning at a dangerous angle over him in bed with a full bottle of feed. Previously, when I was in the family room watching TV he had tried to climb over the bed to the phone to ring me as he had dreamt that he had received a message from me that I was in trouble and needed help.

The problem is he currently can't decipher between what is a dream and reality this week and I think it is all connected to the increased and extra medication he is on. Still his "projects" as he calls them are pretty interesting and complex. He just told me he was waiting on some paperwork for some legal cases; yesterday, he was negotiating a multi-million dollar contract and also working on negotiating a resolution in the Balkans as well as being at the UN. He often sees people in the room and talks to them. My main concern is that he doesn't hurt himself, doesn't fall or pull out the peg tube as the latter is a serious problem. Apparently the peg site would close over within 2 hours and he would have to be admitted to hospital for a new one to be put in and this one was very difficult to insert, but without it he has no means of getting fluids or nourishment and that just cannot be allowed to happen. If he falls or can't get around (at least the few steps to and from the bathroom) then that would make it really difficult to be able to keep caring for him at home on my own (unless there are some other you-beaut aids that would assist me) and that is something I just do not want to contemplate.

So at night, the bedroom is very noisy - usually the oxygen machine is on, the feed machine is on, Peter is moving in bed constantly, talking/whispering to his hallucinations, coughing up sputum and his chest is bubbling like a middle eastern water pipe. If I can get to sleep then I am woken by Peter needing to go to the toilet and he needs help to manoeuvre the IV pole around and get safely out of the bathroom. Unfortunately, I don't just go back to sleep so often I am just dozing off again when he needs something else an hour or so later. Some days it is okay and I don't feel too bad but sleep deprivation does make me a bit snappish and so having a nap in the afternoon, wherever possible has now become a must so I can build up a little store of sleep against the evening when it might not be possible to get very much and so I can be as helpful to Peter as possible.

Anyway, as usual our life is full of interesting and challenging things. One of the nice things was a whistle stop visit by Trevor from Sydney who was down for work and popped over for an hour on Thursday evening, which was great and a lovely surprise. I had hoped to schedule a couple of other visits with Peter's friends this week but things have been pretty difficult for Peter and so I have not done so in the hope that he will pick up once the infection and the new drugs are under control. Fingers crossed!!

This week, it's a lower key time with the GP and major house cleaning on Wednesday, pall care nurse on Tuesday and Friday and hopefully my volunteer coming in on Tuesday afternoon. Last week I was able to catch the Charles Bayliss photographic exhibition at the National Library (fabulous images of Sydney, Melbourne etc from 1875 and so on) and a few of the other magnificent photographs of the Northern Territory and Arnhem Land (spectacular is the word) by Richard Green "Wild Places" which I understand from the book shop assistant will be coming out in a book at some stage.

This week I may well catch up on some of the other exhibitions in the Parliamentary Triangle if I can make it. As I can only get around 3 or 3 and 1/2 hours away, it means I can get about 2 hours with some interesting exhibits excluding travel time so that's worthwhile.

Anyway, enough of these ramblings. I am off to attempt an afternoon nap and think of spring which is arriving tomorrow.

Cheers - Leanne