In the last couple of days Philip has had a number of visitors, which he has appreciated. However he is tiring and he feels visitors need to taper off in order for him to spend personal time with close family and to allow time to rest or sleep. The days are fragmented in any case with doctors' rounds, nurses dispensing medication, giving washes and changing PJs, and with meals.
He wishes to thank all his visitors and those who have rung, sent flowers and good wishes, offered support in many ways and expressed love and thanks for his friendship. He has been touched by the appreciation expressed for his actions - sometimes long ago - and for his more recent, often draining, work as a mental health activist.
For him and for his family it has been an extremely challenging few months. He has borne all with remarkable fortitude. From the earliest diagnosis of pneumonia, then lung cancer, then (after the hospital-induced hernia) cancer of the liver and possibly colon, to the devastating PET scan which showed literally hundreds of metastases ("You probably have only a few weeks or months to live"), to the lab results which showed he was in the small percentage of people who could have targeted therapy with Tarceva (this was delivered, bitterly ironic in retrospect, as "You've won the lottery" and "You should have a couple of years"), to his current position where the Tarceva-of-the-horrible-side-effects has completely failed, his spine has collapsed and he is in the end stages of his life.
He has also had to deal with unstable pain, a myriad of tests, the differing opinions of clinicians (we realise medicine cannot be an exact science) and most recently with the on-off status of his move to the hospice.
As a family we have had to cope with learning about and organising an ACAT assessment, putting the home care program in place along with the separate home-based palliative care, getting in the early stages a disability parking sticker, companion and taxi subsidy cards, loan and eventual return of recliner chair and wheelie walker, shower seat and over-the-toilet frame, and checking out exercise physiology for cancer people, aged care facilities and the ramifications thereof. We are still debating whether to get Philip moved to Calvary Private hospital where he would have his own room but this might militate against a move to the hospice.
Keep reading the blog, it's another skill I never thought I would acquire at the age of 76/77. I will update it as often as I can.
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