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Every day I wake up and wonder if today is the day. Why am I not dead yet? | Shirley Barrett

“Extended weeks,” said my palliative care doctor when I asked for my prognosis.

“Extended?” cried my daughter. “What does that even mean?”

“It means we can’t be more specific,” she responded.

Meanwhile Chris and I were stunned speechless. Weeks! We thought that I would drift on the way that I have been drifting indefinitely. I have to say that this was some (extended) weeks ago now, and things are much the same.

I am wobbly on my feet and hobble like a penguin. Yesterday we went to Bronte beach where we had fish and chips and I sat in the car and watched Chris throw the ball for our dog Donnie. When we came home and the family attempted to prise me out of the car, my legs gave away and I fell to the pavement like a sack of potatoes, complete with a hysterical cry which brought the neighbours out. Chris heaved me to my feet (I worry about that man’s back); my daughter rushed over with a wheelchair and they pushed me back inside, where I went straight to bed to recover.

Yet every day I wake up and wonder if today is the day, the beginning of the end.

But apart from the extreme wobbliness and weakness of legs, I eat like a horse and seem relatively robust. I spend much of my days sleeping, receiving the occasional visitor and trying to write. What can I write about? My pet subject, it seems, which is dying. I have stopped taking medication, apart from pain killers. So why am I not dead yet? When does that happen? And how will it happen? I hope peacefully and comfortably, lying picturesquely on my bed, an expression of gentle wisdom on my face, my family in close attendance. I have some pretty nighties in readiness.

“Three weeks,” my GP told my daughter. Sheesh. I think at that point we may have stopped asking.

That was at least three weeks ago.

At night, Chris lies beside me and we reminisce about the adventures we have had over the 40 years we have been together. It’s probably my favourite part of my day. Then he starts to nod off and I get annoyed with him, because I want to continue reminiscing interminably. I don’t have a lot of other things to talk about.

Sometimes during the day one of the girls flops herself down beside me and we chat and do a bit of online shopping, or my mother will take that place when she’s up from Melbourne, and we talk about her family, including the aunt with the brittle bones which broke whenever you hugged her, which is much less amusing (why was it ever amusing?) now that I have brittle bones.

We have a neighbour named Mel, a nutritionist, who cooks dinner for us almost every night. Last night it was homemade pizza and pavlova (she knows I love pavlova). She bakes us sourdough and banana bread and on Anzac Day, she baked Anzac biscuits for the entire street.

We are a bit anxious about the money she must be spending on groceries to cook for us every night, but she won’t take any remuneration from us. We bought her a restaurant voucher as a token of appreciation, but this felt like meagre reparation for such unbelievable ongoing kindness and generosity. And it was not as if we knew her very well before I got sick – just a wave across the street as we walked our dogs. Now she has become a big part of our lives. She even caters for our vegan daughter Emmeline. We have to watch that we don’t take her for granted: “What is Mel cooking for us tonight?” we start to ponder around 5 o’clock. There’s a knock on the door around 6.30 and she breezes in with our dinner.

I often ask myself, would it have even occurred to me to do the same had our roles been reversed?

I am not so worried about the “extended weeks” prognosis these days as I seem to stay much the same. The latest is rib pain on my left hand side which hurts when I breathe in deeply. Then I let out one of my “Urrgghh!” cries and the whole family leaps to attention. What a drama queen I have become. I sleep a lot.

Film director Shirley Barrett
Shirley Barrett, writing at her desk in 2016. Photograph: Karl Schwerdtfeger

“I need a project,” I lament. Chris suggests I write about some of our travel adventures. It occurred to me that I could write about us in 2006 driving innocently, like the hapless Griswold family, past burnt-out buses into Oaxaca, Mexico, which was the scene of great civil unrest after a teachers’ strike. We had gone there for the Day of the Dead celebrations, but it seemed all the gringos had wisely cleared out. Except for us. Instead we drove in with two young girls in the car. Busloads of armed Federales passed us on the way.

Chris and I looked at each other and thought, “What the hell have we ventured into?” Violent eruptions would break out in the street, and I would hasten the girls into doorways, cursing myself for being so naive as to bring the children into a situation we did not understand.

Usually, I keep a travel diary but in this instance I didn’t. I regret this because I have forgotten so much. So it is up to Chris and me to reminisce, and I try to squeeze in as much reminiscing as I can.

What do I most like to reminisce about? Well, apart from the girls and some of the antics they got up to, I like to reminisce about our various marine adventures: seeing killer whales swimming in the wild, swimming with whale sharks, and the biggest highlight of all, swimming with humpbacks in Tonga. How to describe jumping off a boat with your snorkel and seeing a huge barnacled creature, as big as a bus, looming up beneath you? At one point we were caught up in a “heat run”, where male whales compete ferociously for a female. I remember sticking my head underwater and seeing about eight whales swimming beneath me at top speed in their pursuit. “Yikes,” I thought. “This is no place for me.” I clambered back on to the boat as fast as I could.

So I come back to my question: why am I not dead yet when my remaining days were numbered in weeks? And how will I know when the big day finally looms?

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