Philip's pain has not completely gone as he was woken at 1 am with pain in the right leg. Numbness does not mean you cannot feel pain - something I should have known from my peripheral neuropathy but somehow I failed to make the obvious connection. Anyway the pain subsided after some hours and by the time Jocelyn and I visited it was once again down to a low level.
Dt Michael Chapman from Pall Care again gave us an unhurried consultation and answered all our questions to the best of his ability. Apart from the big imponderable, Philip's prognosis. His experience and view was rather different from the oncology consultant's and he thought it was possible, if not likely, that he could live some months.
He said that palliative care did not mean prolonging life for the sake of it but was focussed on the patient's comfort so that they get the most out of each day..
He also discussed increasing Lyrica for the neurological pain (the side effects of drowsiness and confusion should dissipate within a few days as tolerance develops), whether oxygen should be controlled by Philip unless he becomes short of breath, what can be expected regarding appetite and interest in food and,importantly, the need to get him out of bed to avoid pressure sores developing. This has not really been possible in the hospital setting.
So, with radiation treatment finished (he had the last one today, it seems he didn't have two treatments on a single day last week as we thought) he will recommend that Philip moves to the hospice when a bed becomes available. Then if his pain stabilises he might need to go to an aged care facility or move to a private hospital for palliative care (this would mean that he wouldn't get care from the Palliative Care team) or return home; but care plans would have to be robust and it would take a lot of planning.
Jocelyn and I have decided that the Page care facility is not acceptable. At least time at CHH will give breathing space to check out alternatives and see how long the wait lists are at Kangara Waters, Calvary and Goodwin which we think are the best choices if they have a place.
For Mothers' Day Jason cooked a delicious dinner of salmon with crumbed topping and roast vegetables to accompany it, as well as an exotic raspberry/meringue/chocolate sauce/cream dessert. His mother Robyn joined us. Jason then called in to the hospital and cooked some salmon in the microwave for Philip, which he greatly enjoyed.
Jocelyn, Jason and the children returned to Sydney mid-afternoon. I have been most grateful to have Jocelyn's support but I am very conscious that three visits in a little over a week has been stressful on her and the family. I hope that the planned move to the hospice will bring some more stability to Philip's life and and our lives..
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