A slightly better week

This week has definitely been better than last week, with only a few occurrences which were of concern.

The antibiotics seem to be clearing up Peter's chest infection this week, with the coughing and sputum being greatly reduced. He is currently on the 3rd continuous antibiotic prescription which ends on Tuesday and I really hope this will be enough to get rid of the infection for good. However, the side effects are that he feels dreadfully nauseous and sick and that makes him very miserable.

However, the pain has not decreased much and I have increased the number of times he has paracetemol and codeine to assist and there has been some limited success there but only for an hour or two. The pall care specialist was keen for Peter to come into the hospice this week because his medication is not well adjusted at the moment and they also had a bed available but Peter declined on 2 occasions. On Wednesday his right hand, was swollen and bluish purple at the fingers and I was concerned the fluid was either related to medication side effects or circulation problems. Another call to the pall care team and Dr Pacl called our GP who visited at lunch time and suggested that it was all to do with the nerve damage and something called RSD (which sounded reasonable at the time but as I didn't write it down I now no longer know what it is). So nothing much to be done there, perhaps raising it so that the fluid drains and that's about it but definitely not a drug reaction as that would have been in both hands. As previously mentioned the right arm is now entirely without function and is as if Peter has had a stroke. He can't do much with it at all and the hand won't close, the fingers don't work and he finds it incredibly painful (major pins and needles all the time) and distressing.

In the early hours of Friday morning, after a toilet break, Peter felt he couldn't breathe properly and despite me providing him with the nebuliser and ventolin and doing all the things he needs, he felt I wasn't doing enough and was putting his life in jeopardy. So I rang the 24 hour pall care line and they advised me to do as I was doing, give increased oxygen saturation and administer hydromorphone. Peter also talked to them but wasn't happy with that and wanted an ambulance, so I called the emergency number and after discussion and advising them of the situation they spoke with Peter and reassured him (he was in fact breathing okay, if a little laboured and speaking in full sentences etc). So the "link" team nurses came out about 3.30am and by the time they came to see him and I had done all that was suggested, he was calmer, breathing well and the distress had faded. The trouble is that at night Peter gets more worried and distressed and this can escalate, as it did the other evening. I don't blame him as when you are so sick and your nose, throat and chest are all feeling constricted or blocked it's a very distressing thing.

On Friday, during business hours, I rang to try to bring forward the appointment with the Ear Nose and Throat specialist as the restriction in his throat seems to be getting worse and I think that's the thing that frightens him most. I am hopeful there may be a cancellation appointment tomorrow that we can have so we can ask the specialist to look down Peter's throat and see what is happening and whether something can be done to assist him.

Apart from these eventful moments, I was able to go out for a couple of hours on Tuesday and met up with a friend who has moved to Canberra from Darwin with her husband. We had a lovely time albeit it was too short and a bit rushed.

Spring has arrived - pink blossoms on the fruit trees, weekly clothes wash that actually dried outside in the fresh air and we have planted a new Fig tree (Black Genoa) which I hope will thrive and yield lots of fabulous figs in a couple of years.

I have also been trying to get organised in case a bed comes up in the hospice (Clare Holland House) next week, as they have booked Peter in for up to 2 weeks so I can have some respite to visit my parents. Apparently, tomorrow morning I will have to phone to see if there is a vacancy and if so I will take Peter and all his equipment in by early afternoon (as it will take me that long to get everything organised). If there isn't a vacancy then we will meander on as usual here at home.

Peter is not pleased about going but is keen for me to see my parents and have a few days off from the 24 hour care, so he knows there's no alternative. I know we will both miss each other desperately as we have only been apart for no more than 4 days in the past 13 years, but the thought of a night of unbroken sleep, as well as my mother's cakes and chicken roast is a great lure, not to mention playing with my 7 year old niece and hearing dad's stories about the old days - they are all compelling reasons to find some time every now and again to spend with them.

If Peter is admitted to the hospice I will post another message in the next day or so. If not, look out for next Sunday's news. Best wishes to you all - Leanne