Today's contra-opinion started with the advice that Philip was "too well" to go to Clare Holland House, that it is for those who are expected to die within a few weeks at most. Yet yesterday it seemed that the consultant thought his demise was imminent. Then a nurse opined that he should be getting baseline pain medication twice a day; but later a doctor says "night time only". There is further conflict between those who say he can have as much hydromorphone for breakthrough pain as he wants and the nurses who agree that it is prn (on demand) but 2-hourly only.
In any event Philip still has pain mainly from his collapsed spine and his leg which is affected by the tumours pressing on the spinal cord and leg nerves. Sadly he is now bedbound. (A soft fluffy underblanket brought in by his niece today is improving his comfort.)
We had visits from two social workers, a student dietician who did a careful examination of his muscles and recommended hospital-provided smoothies (they have yet to put in an appearance) and from the Palliative Care team. The doctor's advice was that Philip could not return home as he would require two nurses 24 hours; but that he was too well for CH House. However he would see if he could go there for respite (and we would hope proper pain management). He said they were stopping the targeted anticancer drug Tarceva as it was having no beneficial effect but unpleasant side effects, including skin rash and blistering.
Philip's brother Graham, sister-in-law Thelma and niece Alison visited late afternoon, having driven from Fish Creek and Foster in Gippsland to Melbourne and flown from there. It was the highlight of the day for Philip, he loves them all dearly.
Overnight his room was required by a highly infectious patient as an isolation room and Philip was moved to a four bed ward, 22A which is a big step down in amenity, being noisy and cramped.
Thursday 5th May, now in 22A
Philip had a bad night with pain and was not so lively when Graham, Thelma and Alison visited again in the morning. But he was able to spend quality time with his brother. The family left at midday to fly home while I left soon after to catch up on some paper work and get in some basic supplies.
Philip had the fourth of his course of radiation (a painful process, lying on a hard slab) and was by then extremely fatigued and later scarcely remembered a visit from Lisa in the afternoon..
We would like him out of the unpleasant ward he is now in and equally do not want him to be bounced around from one place to another; he has had more than enough of that. We are now facing the prospect of a residential care facility so Jocelyn did a lot of phoning around today. The usual story is "No room in the inn" and long waiting lists. However there is a vacancy in nearby Page, Belconnen, so we are going to have a look at it tomorrow afternoon. Timing is tight: we have a 5 pm appointment while Jocelyn's train gets in at 4.29 pm. She will be bringing 2 y.o. Vida.
Tomorrow afternoon we expect Philip's cousin Barrie and his daughter Catherine to visit. They are flying up from Melbourne just for the day. On Monday Rosa, a work colleague of Philip's, is coming from Merimbula with her husband Ross. The weekend looks fairly free if any of you, dear readers, is thinking of visiting.
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