It has been very difficult to make contact with the doctors who have seen Philip and unlike at Calvary they do not phone me. However I did manage to meet one of the Palliative Care team, Dr Michael Chapman, who had a compassionate and unhurried conversation with me after Philip's final dose of radiation. His advice was much as expected,:that Philip was gravely ill, that difficulty in stabilising pain control and spinal cord compression usually indicated more rapid progression of disease, and that each case is individual so that he could not give a definite life expectancy but that it was more likely weeks than months. They could not be confident of getting pain management stable.
He discussed the implications of various options available to us but said that any care plan needed to be robust..
Having been told that TCH could not keep Philip indefinitely and that he could not be cared for at home, we had already been researching alternatives. Jocelyn rang all care facilities in northern Canberra and found only one that was not full and did not have waiting lists - Bill McKenzie Gardens in Page, aka Coral Park and formerly the deregistered Gininderra Gardens now under new management.
Jocelyn arrived from Sydney late afternoon with toddler Vida and my friend Rosemary picked her up from the train station and we met at Coral Park. It is an older facility and we did not warm to the intake officer whose first words of greeting were, "Have you got the ACAT assessment there", closely followed by "Have you got a copy of the Power of Attorney".. The facility manager was a warmer personality and answered all our questions about quality of care. We saw several empty rooms (significant, we thought, given that every other place in Canberra was full to bursting) and one room had a pleasant outlook onto a courtyard. Jocelyn took photos, handled the financial questions - she was quite familiar with the financial side of things from her previous work with the Benevolent Society - and we went home with various papers to be filled in.
7th May
Dr Chris Pulvirente, the consultant, made an early morning visit to Philip and in answer to his query confirmed that she thought he had about a month to live, perhaps 2 to 6 weeks. A confronting prognosis to deal with but one Philip is handling with stoicism. He gave us this latest news news by phone.
At home, a number of friends arrived with flowers for my birthday (bless them),and a bouquet was delivered from Philip, so we three were a little late in setting off for the hospital.
Jocelyn had cooked a beautiful chocolate mousse birthday cake.decorated with raspberries and cream and Vida helped blow out the candles while everyone sang Happy Birthday.. Our former neighbours Faye and Alan Green were visiting and Alan took photos.
Philip was almost pain free today and was in good form talking with his visitors. He was able to discuss the meaning of life and the existence (or not) of God with his friend John Brooke, read a story to Vida which Jocelyn videoed on her phone, and told some of his life story to a friend from the mental health carers network.
He got a card from another friend from the MHCN which moved him to tears: it thanked him for his "relentless effort and energy to improve the status of mental health - an advocate for those who suffer." A more recent friend from the network who visited last week and who has shown equal energy and determination gave him a beautiful little book she had published with her stories and ink brush illustrations. While we have both at times felt dispirited over the agonisingly slow pace of reform in mental health, it is gratifying to see that our efforts are appreciated.
In the afternoon friends from his computer group visited but I had been given a 'leave pass' to go to Uncle Vanya at the Rep for my birthday, accompanied by my friend Meredith who has been at Queensland Uni with Philip. She reminisced that he had been in the 'stellar group' there and recalled him acting in a Moliere play, Le Medecin malgre lui (pardon lack of accents).
Jason and Griffin arrived from Sydney (Griffin's team had won their hockey match) and we all enjoyed a lovely dinner cooked by Jocelyn.
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