Since I last wrote I’m back firmly ensconced in Canberra. It’s been an easy transition with the exception of my medical care.
I always knew my Peter Mac doctors were good but it’s now clearer than ever. I have a grim prognosis. The five year survival rate for my diagnosis is somewhere between five and nineteen percent (depending on which lot of stats you are looking at). In the last six months I’ve lost two dear friends with my same diagnosis. Both mothers of young children. Both older than me, but not by much. It’s all too real to me. I call myself an optimistic pragmatist in relation to my cancer. I think I’ve been smugly giving myself credit for this attitude when in fact it may well have been the gift of my treating team at Peter Mac.
I have never once been made to feel like a hopeless case by my doctors and nurses there, nor that my fate is written in stone. They have not given me false hope but they have given me the courage to live each day, to be pleased with my good responses and to hope for more of the same. In particular, Michael my oncologist is so skilled in this regard. I imagine the term ‘patient led’ is thrown about a bit in the medical field. A bit like ‘strategic’ or ‘evidence based policy’ in the public service. Easily said, difficult to actually do. Michael is so good at it. If the time comes that there is no hope, he is the person I want to hear it from.
My first oncology appointment in Canberra really brought home to me how good my Peter Mac experience was. It would almost be comic if it wasn’t so awful. I hope that one day I’ll be able to laugh at it – I shall tuck it away for the novel. Long story short, this oncologist wanted me to be in no doubt that I will die, probably quite soon, and that I will die in great pain. It was all said very politely but it was like talking to a wall. Everything David or I said just bounced off him as he returned to his theme of my imminent and unpleasant demise.
The appointment sent David into an immediate decline. I think I’ve had a delayed reaction to the conversation. Initially I shrugged it off. But for the last week or so I’ve felt like a dead woman walking. Susan Sontag’s quote about our dual citizenship – of the kingdom of the well and the kingdom of the sick – is on repeat in my head. Perhaps for the first time I feel marked as a citizen of the other place – the sick. I feel separate, even from David and Violet. I’m struggling to believe I’ll see Violet start school. I’m not afraid of pain but I’m so very afraid of leaving my people.
It’s funny what can help. On Monday I unexpectedly ran into a school friend who happened to be visiting from Brisbane. It was lovely to see her and to be reminded of that bit of my life. We agreed that adulting is bloody hard. And yesterday I had a coffee with my wonderful Alicia. I told her all about the appointment and I could see she was a bit teary. I don’t know why but I found this comforting. I don’t want to make my people sad. But while I spend a lot of energy trying to live as normally as possible, it is good to be reminded that my life has some pretty traumatic moments.
I’m currently trying to change oncologists up here. In a few weeks we’ll go back to Melbourne and I’ll see my Peter Mac doctors. I’m lucky this is an option. At some point I’ll write some more about treatment and outcomes in the regions versus the bigger cities but for now I will sign off. My aim for the next few weeks is to keep plodding along. One day at a time. Sufficient unto today is the evil thereof.
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor