APRIL 2012
David has a particular type of malignancy called an adenocarcinoma, which we’re told is the culmination of many years of gastric reflux eroding the tissue where the oesophagus joins the stomach. After the scan in Sydney, when we were advised the condition was inoperable, we were given referrals to two oncology specialists – one for radiation and one for chemotherapy.
I have always known that some specialists, amazing and knowledgeable as they are, can be narrow or blinkered in their focus. Some may only see the problem – such as the tumour – and not the human being as a whole. I remember decades ago a friend who, shortly after giving birth, was diagnosed with an aggressive brain tumour. The brain surgeon offered plenty of information and advice, but when my friend asked if she could continue lactating after the surgery and during the treatment, he was totally nonplussed. ‘What’s lactating?’ he asked. He knew just about everything there was to know about a brain, but nothing whatsoever about a mother’s breasts.
The radiation oncologist is the first specialist we meet. He lacks warmth.
‘What have you been told?’ the specialist asks David.
‘That the tumour is inoperable,’ David responds glumly.
‘Yes,’ he concurs. ‘Inoperable, incurable and terminal.’
Well, he’s definitely not mincing his words! A social worker is sitting in on the consultation and I wonder if she’s required for additional support if people respond negatively to his apparent complete lack of compassion.
Rubbing salt into the wound, he asks David to remove his shirt and sit on a low stool. Standing behind him, the specialist palpates under David’s left collar bone then invites me to come over and also dig my fingertips in behind the bone to feel the tumour that is part of the metastasis. I can indeed feel a hard lump. I wish I’d refused to do it.
Even though he still doesn’t really believe the bad news, David asks the inevitable: ‘How long do I have?’
‘It could be a matter of six months or it could be as long as eighteen months,’ the doctor says. ‘The average is a year.’
‘And what will actually kill me?’
‘Starvation probably. The tumour will block the entrance to the stomach. We can put in a valve and feed you directly into the stomach,’ he adds, as if we’ll be thrilled at this prospect.
‘No way will I be doing that!’ David fires back.
And no way will David ever starve to death, I think to myself.
I recall almost nothing from the rest of this dismal appointment. Dr Death, as David quickly nicknames him, lists a few radiotherapy centres for us to consider – some in Sydney and some in the bush. David opts for the rural centre of Wagga Wagga, about four hours’ drive from our home, as he doesn’t fancy spending a whole month in the city. Also, knowing I’ll be away leading a trek for the first seven days of the treatment, he is consoled that Lilier Lodge, a large country town facility, has comfortable patient accommodation funded by two cancer-support organisations – a combination of government funding and, once again, community fundraising.
There’s also the issue of our finances. Although we’ve paid for basic medical insurance for decades, David is reluctant to use it because the gap payment can be alarming. As self-employed people working in the arts we don’t have superannuation – we own our small farm and have some modest savings. David has always handled the money side of things in our relationship, and he’s a worrier by nature. He rarely, if ever, spends any money on himself – I have to drag him under protest to replace jackets and trousers that are worn at the knees and elbows, and I’m grudgingly allowed to replace socks and jocks only when they become threadbare. It follows that if being treated in the bush is a cheaper option that’s always going to be the one he will choose. For me, I just want him to have the best possible treatment; the best chance of survival. It will, in time, become a sticking point between us.
We have a numb, dazed drive back to the farm. I had a strong gut instinct to be with David on every step of this frightening journey. Imagine having a session like that one, with Dr Death, all on your own. Having an ally during medical meetings is essential. David doesn’t necessarily remember everything that has been discussed or, rather, he chooses to remember only what he wants to hear. He rarely thinks of the right questions to ask at the time and never challenges a course of action that is proposed, which is just not like him at all.
It’s chilly enough to light the fire in the sitting room when we get home. I put a pot of soup on the fuel stove and pour us each a stiff gin and tonic. We need to deconstruct the last hour.
This dying situation has galvanised us like never before. In more than forty years together we’ve spent plenty of time apart – David virtually lived in his Sydney office Monday to Friday for more than twenty years and was always away for several months at a time when a film was in production. We had done several fantastic overseas trips together, but when the children were grown I started travelling without him, as a tour guide, so we had developed very independent and self-sufficient lives. Yet we were singularly intertwined emotionally, and I know we’ll need to depend on each other during the weeks, months and hopefully years ahead.
That afternoon, during a long lunch with wine, we discuss the effects of negativity on people who are sick. From my perspective, while I understand the need for the radiation oncologist to be clear and frank – to be certain that we understand both the diagnosis and prognosis – I believe his brutal manner was counterproductive. Demoralising. Discouraging. Dispiriting.
David, on the other hand, just really wants to kill him. He’s a fighter and not known for taking shit from people. The medico–patient relationship can be a tough one to handle – from both sides. I’m amused David has come up with the nickname Dr Death for this chap. In a way it’s stiffened our resolve to combat this medical skepticism, and from my perspective anything that brings humour into a situation has to be a positive.
We also talk about the next tour I’m set to lead, which will coincide with the first seven days of David’s radiotherapy treatment. I really don’t want to go ahead with it but David is absolutely adamant. David’s stubborn insistence that I continue to work is no doubt because he’s thinking ahead, knowing I’ll need to survive financially after he’s no longer around. I do understand, too, that he needs life to feel as ‘normal’ as possible, but I fear I’ll be anxious the entire time knowing what he’s enduring while I’m climbing up some mountainside in Sikkim. It would be difficult to back out because the trip is fully booked and organised down to the last sleeping bag, yet how can I comfortably leave him to deal with this medical situation alone?