Sunday 24th August 2008

As predicted last week was particularly hectic.

We had the OT visit on Monday to help us consider what might be useful in terms of grab rails in the bathrooms and toilets and the workman - who was a gem beyond price - came on Friday. After discussions with him and practical assessment of what was going to work and what might not with the actual pieces of hardware in hand, we had a grab rail installed in each shower cubicle, new hand held showers in each with 2 metre long articulated hoses for maximum flexibility and a small vertical grab rail at the toilet. All in all, with the workman's practical assistance, and forebearance with Peter's and my differences of opinion/recollection, that saved us over $400 and we were able to get rails in the almond colour that matches our tiles rather than ghastly stainless steel which always reminds me of hospitals and industrial applications. So that was a success.

We had the pall care nurse and GP visit on Tuesday; the CT scan was scheduled for Wednesday and that occurred reasonably smoothly and Friday we had the pall care nurse, grab rails and delivery of a delightfully named "throne accessory" from the plentiful and free supply from the Canberra Hospital's Equipment Loan Program. This I had to install, with some deft analysing of how the thing worked and manoeuvring of the toilet seat, screws etc out and then a couple of false starts and I got it in successfully. So now the main bathroom toilet has arm rests to assist all and sundry, but particularly Peter, to get off the toilet without having to be creative and perhaps have a potential fall.

Yesterday we also scheduled a visit from Kathleen and Dave who have been great supports over the past many months and with whom Peter has been keen to catch up, along with many others. They came here and the visit went very well. Peter really enjoyed their company and was very engaged but, as is to be expected, he was exhausted at the end of the day and was in pain.

As far as Peter's health goes this week the antibiotics did wonders for the lung infection and they finished on Wednesday. He had a great week, up watching the Olympics for several hours each day, doing his exercises and feeling pretty good and only disturbed once or twice during the nights . Then around Friday his condition started to show some signs of falling away again, especially over the weekend with more congestion/sputum and a very bad night last night - distressed and disturbed, up 5 times to the toilet, unable to breath, panicking and with escalating stress, fears and demands. So today he has not felt able to do any exercises, shower or engage in any way. I have commenced him on a medication the GP suggested which is to loosen the phlegm and help bring it up and while that seems to have started to kick in, like everything, it has its own side effects. So while we had the sweating under control last week, it has now commenced again as a side effect of the Bisolvin and, as usual, has a number of other effects which include breathlessness, nausea etc. I had been weaning Peter off unnecessary medications in the last couple of weeks, on medical advice so that recently he has been only on vitamins/minerals, ventolin, thyroid and arthritic medications (along with the pain medications of course). But now it looks as if we'll have to try to get on top of this chest thing again.

Anyway, today I spent almost all day in the bedroom with him and had a long nap this afternoon to try to catch up as if Peter is disturbed I am lucky to get 1 and 1/2 or 2 hours sleep in a row without disruption and last night's 4 or 5 disruptions meant I was feeling a little tetchy.
Hopefully tonight will be better and if not, then at least I have a small reserve from the nap this afternoon.

This week we have the appointment with the Oncologist, Dr Yip. Hopefully the CT scan and blood tests will be back and we will have some facts to go on in term of what's happening and how to proceed. The problem being Peter is always greatly distressed immediately before and after a visit to Dr Yip as the enormity of what is happening is laid out before us again and again. So I expect a few stressful days ahead for both of us.

Until next time. Salut - Leanne