Nurse Dale said: “Every day is precious now.”

She said, “What people want most now is your time.”

Mum’s sleeping more and eating less. She’s sleeping now. When she’s awake, she’s – I have run out of words to describe her valor and derring-do. As she gets thinner she is more and more like a bolt of silver fire. Like Galadriel, only funnier.

My brother Iain and his partner Rachel drove up from Sydney last night. Mum’s overjoyed to have them here. We played some good mah jongg this morning. Mum won a game.

Rachel’s car was fine all the way to my sister’s house, then broke its fanbelt on the way to Pam’s. Luckily Adam is in Tamworth today, meeting his parents and picking up his puppy. He’s getting a new fanbelt for Iain and a new pair of tongs for Dad, who broke his old tongs collecting fallen needles from around the base of the Bunya pine.

I drove down to the markets to spend a bit of time with Dad. We had coffee together in the Playhouse.

But I can’t stay away from my mother for very long.

I love her.

First a clarification on behalf of Dad, who I am pleased to discover still reads my blog with close attention. Dad’s view on his own condition is that he has a little problem with his language, not with his memory.

—–

Dad and I went for a lovely drive the other day. We went out to Mulwarree, the homestead that is the original of the Rupert Richardson watercolour in Mum’s hospital room. It’s only 7km out of town, but the Hereford cattle, the dry golden paddocks and the gnarled gum trees are pure outback.

The lightning storm on Monday night had sparked a bushfire on Mount Hobden, and we could see the smoke streaming off the mountain and the haze falling from it like white rain. We stopped behind the saleyards so that I could speak words of love to four Thoroughbred broodmares, their bellies heavy with foal.

—–

Mum is …stable. She eats little or nothing and keeps little enough of it down, but she can cope with Sustagen, and usually has a glass of it on the go. Sylvia the syringe driver keeps her pain at zero, mostly.

The improvement this has made to her quality of life is hard to adequately convey. After Christmas (when Mum was still treating her end-stage cancer pain with the equivalent of Tylenol) it was hard for her to sit up long enough to play a game of mah jongg. She was folded in on herself. She looked grey.

Now she is comfortable, and the glow has returned to her skin. We play for hours. We watch The Last of the Summer Wine. We finish crosswords. She is teaching Sarah to do crosswords. She tells jokes. She is full of good cheer.

Morphine is mercy.

—–

She is a remarkable listener. Her friends come by and tell her extraordinary, deeply personal stories. Mum is a quiet and accepting presence. It’s a privilege to witness.

—–

I’m settling in for my fourth night on the pull-out sofa. I take my meds, I brush my teeth, I eat healthy food, I swim my laps.

I take each thing as it comes. I look for things that need doing. I do a little bit of work while Mum is asleep.

I’m very lucky to be here.

I’ve slept on Mum’s pull-out sofa bed the last couple of nights. I am expert in the use of Mum’s TV, DVD and breathing bed. I have the freedom of the hospital kitchen.

I leave for an hour or two at a time, to spend time with Dad (whose dementia doesn’t comprehend the severity of Mum’s illness, a perverse blessing), to hang with my therapy wolf (who put a vast paw through my rose gold necklace, but I found the charms in the grass, so it’s okay), to swim endless slow laps at the pool.

Mum’s still funny and brave. From my Twitterstream:

• Nurse: “I thought, when I looked in the other day, you look like a family on summer holiday in a motel. I thought, I wanna sit with them!”
• Somewhat difficult night but “I’m all right really, you know,” says Mum.
• Sarah: “I’m going to make zucchini slice. I feel like a zucchini slice.” Mum: “You look like a zucchini slice and all.”
• “Sarah’s coming over in five minutes.” “Is she bringing the Bailey’s?” It’s 8am.
• “Mum, you’re amazing. You are so strong.” “People keep saying that. How else would I be?”

David Foster Wallace may not have been the best choice. Palliative care is not unlike a cruise ship; comfortable and existentially horrifying.

The syringe driver’s name is Sylvia and it’s our new best friend.

I stayed the night with Mum last night. The sofa in her room folds out. “We’re camping!” I said. “That’s right,” she said. We were both glad I was there. I am good at rubbing her back when she is throwing up.

Her illness bores her, but she doesn’t dwell on it. She loves having her family and friends around her. She wants to chat and play mah jongg.

“Beautiful mum,” I said, “brave mum,” and she laughed.

Her dear friend Hazel is coming from Sydney today.

This morning I went to Jane’s for a shower and to cuddle my lapwolf. I called Jeremy, who told me about Bebe. “Her eyes are still bright,” he said.

Now I am at Henry Street, where Sarah’s black kitten is mewing hello to me and walking across the keyboard purring, exactly the way Bebe likes to do.

I am glad I saved the works of David Foster Wallace for this moment in my life.

Today was a bit easier, a bit harder. Mum slept most of the day. I sat by her bedside reading, or slept in the quiet room across the hall. Friends visited and the family came and went. Sarah and Kelly sat on the couch for hours finishing a cross-stitch of the Cat in the Hat that Mum had started for Al.

She’s still well in herself – a weird thing to say about someone with metastatic cancer, but she doesn’t feel “old” and doesn’t like calling the nurses because it’s not as if she’s “really sick.” When she’s awake she’s very present and enjoys our company. Nurse Dale believes the pain relief is allowing her body to rest itself for the first time in eight months.

I had a long talk to Big, who pointed out that we really need to make sure Dad’s laptop is backed up in case he drops it in a bucket. This is not likely but if it did happen, it would be bad. Sarah has a terabyte USB hard drive lying around, so Al’s going to take it over tomorrow. Systems administration as an expression of love.

So my darling old catty chose a fine time for her kidneys to fail. That’s not entirely sarcastic: I was dreading making final decisions for her, and now Jeremy will do it for me. He brought her home and is giving her fluids and she’s feeling better and will have a peaceful death surrounded by love. Still, yesterday was not easy, and when I said goodnight to mum and she hugged me I was shaking.

“Shh, shh,” she said, stroking my hair.

“Oh no, don’t comfort me or I will start to cry, and if I do I’ll never stop.”

“Yes you will,” she said serenely, and rubbed my back.

In one way yesterday was magnificent. She has had the pump installed – it’s called a syringe driver – and now she is on a continuous dose of morphine. For the first time since she got sick, last May, Mum has zero pain.

Before Big left he said: “What’s humbling is, she isn’t just content. She’s happy.”

This morning we played mah jongg. Dad was very present. He won twice and Mum won twice. This afternoon my brother Iain dug a new post hole for Mum’s mailbox. My brother Alain arrived in the evening. He and Sarah and Mum and I opened the bottle of shiraz and had uproarious fun. We snuck past the nurse’s station in gales of laughter.

Tomorrow Iain and I will set the mailbox in cement. “We will cement the hell out of that hole,” as he put it. Then he has to go home to Sydney.

In between, as I ran various errands, I wept in the arms of Lauren, who runs the deli, and Karen, my Barraba yoga instructor.

People are beyond kind.

Tomorrow Mum gets a morphine pump.

Heat wave. Glaring sunshine. Birdsong. My fucking heart is broken.

I woke at dawn, beset by bird life: galahs, cockatoos, King parrots, rainbow lorikeets, magpies and currawongs all yelling their fool heads off just outside my window.

I’m staying with Jane. She and Darcy and the twins live in one of the lovely old Federation brick houses on the hill above the river. Her spare room is vast, with a high ceiling and a glowing wooden floor and nothing in it but a shelf and a bed, and it opens onto an east-facing verandah. It is so exactly the quiet refuge that I need that when I saw it I was struck dumb. No idea how I can ever thank Jane and her family.

Quiet, that is, except at dawn, with the birds.

I sat on the verandah and glared at the birds and called Jeremy as the sun rose. When Darcy and Jane came out for coffee their dog Chicken came too. She’s a Scottish staghound but she looks a little like the Anatolian shepherds I saw in Turkey and a little like a wolf. She’s bigger than I am. I cleared off the sofa I was sitting on and Chicken kissed me and put her arms around me and her hairy cheek against my face.

“She was bred as a pig dog,” Jane explained. “She could track the pigs and hold the pigs at bay, but she just didn’t want to kill them. They even gave her some piglets -”

“To tear apart?”

“Yeah that was the idea, but she played with them instead. When I heard that, I knew she was the dog for me.”

How do people get through this without animals? Sarah picked me up and I went to Henry Street to snuggle with the creatures there: four dogs (Jake, Peppa, Jess and Toby) and three cats (Oskie, Missy, Tiz). I always thought it would be me with the menagerie.

When we got to the hospital Mum demanded mahjongg. Big had forgotten the rules but not so much that he didn’t win the third game, after Sarah won the first and Mum won the second.

My brother and I arrived to find Mum with her pain under control: radiant with delight at the sight of us, quick to laugh, interested in everything. The palliative care room is beautiful, with a sofa for guests and a door onto a patio. We brought in the quilt that Mum’s friends at the Claypan made for her and it lights up the space.

We talked and talked.

Me: “I asked Dad what he liked most about the years you two were traveling, and he said: ‘Lizards.'”

We all fall about.

Big: “…although lizards are cool.”

Me: “They are!”

Sarah: “Remember the big goanna in Townsville?”

Mum: “With the plastic bag?”

Sarah: “That was amazing.”

Me: “I don’t know this story!”

Sarah: “This goanna – he was huge, like three or four feet long – apparently he hung around the picnic ground a lot, and the day we were there he turned up with a shopping bag wrapped around his head and caught in his jaw.

“So Dad lay down on the grass and the goanna, this wild goanna, it came up to him.

“Everyone in the picnic ground stopped talking. Dad carefully unwound the bag, and the goanna opened his mouth and let Dad lift it off his teeth. Everyone was staring. You could have heard a pin drop.”

Me: “WHY. ARE THERE. NO PICTURES.”

Mum: “We were just caught up in the moment.”

Sarah: “This was before people had cameras all the time. The thing could have savaged Dad. I remember it as being four or five feet -”

Mum, laughing: “Not THAT big -”

Sarah: “No, but in my memory, it’s a Komodo dragon, you know, dripping blood off its teeth.”

Me: “With WINGS.”

Big: “Breathing FIRE.”

(Dad blogged it!)

We are in Barraba, staying in the Playhouse Hotel. This morning Jeremy, Andrew and I had a mighty argument about Harold Pinter over freshly baked croissants. My mother is frail but valiant. My sister is a force of nature. We swim every day and galahs fly overhead, having a bloody good time. There is too much Baileys and Christmas cake with marzipan and icing. Today Julia won mahjongg thrice.

Going through security in Auckland International for the, what, twentysomethingth time this year? I thought, plaintively: I want to go home. But I could not work out what I meant by the word home.

Sydney is very much itself: glary and humid with a gusty breeze; the loud billboards and cheap furniture importers all along O’Riordon Street, and beyond them glimpses of tree-lined streets with nineteenth-century terraces; the lorikeets screaming; the coffee delectable.

Mum has responded well to her treatment and is eating better. Sarah has been a brilliant caregiver. But they are both sick to death of being so far from home. On Friday we will all pack up and go back to Barraba.

First let me say that Mum is in Sydney responding well to treatment and feeling much better, and that I will see her on Wednesday.

Still, though. One of the other great narrative arcs of 2013 is Jackson The Horse And Me: A Love Story. When I rode him on Sunday he was okay on the flat but so clearly uncomfortable over fences that we put him over a crossrail and let it go at that. Today when I turned up to ride, he was in his stall. Toni said he has a contusion injury on his suspensory ligament.

“They let us know when it’s time,” she said. “If he was in full work and this happened, you’d say, oh well. But he pretty much only works with you, so if he’s banging himself up under so little work…”

“I know,” I said, and I do: this whole past year I have been acutely aware that he’s a none-too-sound nineteen-year-old Thoroughbred. They’re going to see how he looks after a week of stall rest and hand walking, but he’s not going to be around forever.

Worse, much worse, is this news out of Ariad Pharmaceuticals. Beth, who is the reason I am at McIntosh Stables and whose horse Austin is the best horse who ever lived, was on the first human trial of Iclusig. The drug is keeping her alive. God forbid that the FDA withdraw it.

“The last four years have been a gift,” she said this morning. Damn straight. Every minute, every second of it.

I rode Olive, a dead ringer for the horse of my dreams. She is amazing.

“You have natural feel,” said my instructor, Avi, and I laughed my head off.

“Does it still count as natural if I’ve been working on it for years and years and years?”

My mum has cancer.

Passages I could have written myself:

Although it was very inconvenient, the most disturbing aspect of the whole episode was the fact that I had been able to ignore the initial pain. By ignoring it, I had made it worse. I was able to recognize this as a warning sign – a notice about my inability to pay attention to the sensations of being in my own body – but I didn’t really have any idea what it would mean to live differently.

Dental care is something of a metaphor for the state of other affairs in my life. Taking care of the tooth disasters involves an act of faith that when something is wrong it can be fixed and that it’s possible to move on… Health maintenance has become for me a sign of self-love, although it also gives rise to some nagging questions about class. Regular dental care seems to be part of the secret life of middle-class domesticity that passes as normal – one of those things that no one talks about but everyone is supposed to do…

When you’re depressed, and all you want to do is sit still or curl up in a ball in bed and never get up, putting the body in motion is a major struggle and a major accomplishment.

I sometimes feel the need to touch the land of my childhood in order to remember myself to myself. I’m not recalling a lost paradise; I’m acknowledging the troubled history that led to my departure as a part of figuring out what it means to go back. My own history of dislocation connects to the histories of immigration and displacement… My “ancestral home” is the site of many histories, both happy and sad, both my own and those belonging to others.

(Note that I am not depressed right now and have not been for years. This book is giving me an opportunity to reflect.)

Back in SF. Jetlagged as hell. Someone said not to make any big decisions but I cut off all my hair.

I cried a bit today, because of everything but specifically, I realized, over missing Alain. We spent two weeks together 24/7, including eight hour car trips and reasonably heavy physical labor, and we didn’t so much as get annoyed with each other. I love him so much. To me, he is perfect. Really not kidding about the twin thing.

I am in rural NSW. Tonight I went to a community meeting with Mum and Dad. I took my needles and yarn and got my Madame Defarge on, knitting and glaring at various scoundrels who have wronged my Dad. “Glad to see you getting into the spirit of small town life,” said Sarah’s awesome friend Jane: “I promised I’d take notes or I’d be putting some rows down too.”

The community meeting was to oppose the plan. The plan is to cut down all the London plane trees and close down three more store fronts along the main street. Poor little Barraba. Tamworth Regional Council might as well just nuke the site from orbit.

It is strange, strange, strange to be here without Jeremy and the children; strange how effortlessly I fall back into my childhood rapport with my brother Alain, twenty months older, my twin. When we do the washing up we are still one person with four hands. With him and Mum and Dad here I am at home but also not; I wake in the icy dark before dawn with my heart racing, not knowing whose house I am in, or in what town, or in what country. I’ve traveled too much this year. Among other things.

Here is the lede I have been burying for five months. My father has been diagnosed with a rare condition called semantic dementia. It is a malfunction in the language processing centres of his brain, which is difficult for him to understand because of the malfunction in the language processing centres of his brain. It is the Eater of Meaning. I used to joke that my father was a genius but I couldn’t prove it. Now I have proof: he has had this condition for months, if not years, and he is still himself, still putting the pieces together, still trying to solve puzzles, still trying to understand. Reaching out, as Ursula le Guin once put it, to be whole.

I have a bunch of mantras which are supposed to help me through this interesting time. Focus on his abilities, not his deficits, I say to myself, and that helps me to be grateful for his undimmed sweetness and affection, for his unaffected memory, to ask him about his childhood in Papua New Guinea, his memories of his mother. Attack this with the hammer of unconditional love and the sword of Not Trying To Fix Everything, I say to myself, as I am interrogating his gerontologist in case there’s a drug treatment we just happened to overlook, as I weed the living hell out of the flower bed in front of his and Mum’s house.

What can I possibly tell you about my father, who showed me the Galilean moons? Love is such a little word for a feeling so big. When I climbed to the top of the highest shell in the Opera House in January, I found a fire panel that had been made in his factory. It was a garden factory and in the garden was a deep pond, with frogs and herons; after watching it for years he realized that it was a spring. He is my source.

Posting mostly to try to keep myself awake. Local time is 4.43pm and I am not sure how I will make it to my goal bedtime of 9pm. We shall see!

I did sleep all the way from SF to Auckland, and the flight from Auckland to Brisbane went quickly because I was enchanted by Bear Grylls, especially in the Iceland episode in which he and Jake Gyllenhaal put the Bro in Brokeback Mountain. Alain winced when I mentioned this, because apparently Bear is a big ol’ hatey Tory Christian who spoke at Hillsong last time he was here. And it turns out he is also a big fakey faker!

Alain and I found each other at the airport and headed out into the greater Brisbane area for flats white. I had to get a SIM card for my phone, and this turned into an epic ordeal as there was already an angry mob of villagers in the store brandishing pitchforks at the Telstra staff, who were being sheepish. Ever since the Regrettable T-Mobile Incident of ’04, Jeremy has done all the talking to phone companies for me, so when they started explaining the details of my plan it was as if they were speaking the language of crows: “Caw! Caw! Caw!” Alain said my whole face glazed over.

Now we are at Alain’s flat and his Bourke’s parrot, Monty, is circling my head and from time to time landing on me and giving me kisses. His feet are cool and he is careful to keep his claws away from my skin.

Me: Dad told us about how when he was seventeen he built a radio controlled boat from a kit and sailed it in the pond at Kew Gardens.

Big: I remember that boat.

Me: You do?

Big: It was in the lawnlocker.

Me: Oh my God. I think I remember it too. About yea big?

Big: Yeah.

Me: I can see the curve of it. And smell what the lawnlocker smelled like. I would never have remembered that on my own, not in a million years.

We had another dinner at the Playhouse last night for the remnant population: Mum, Dad, the Marretts and the Fitzhardinges. Haddon made chicken in a mushroom sauce with broccoli and perfect roast potatoes like Mum used to make – that is, parboiled then deep fried, so that the insides were creamy and the outsides were golden crisp.

Conversation was flagging until I realized it was the eleventh anniversary of another Feast of the Epiphany, also known as the Worst Dinner Party I Ever Threw, Oh My God, Now That I Think About It That Story Doesn’t Reflect Well On Me, At All. I made my way through a bottle of Oyster Bay Marlborough sav blanc and tried to tell the sorry tale. I told it very badly, but it encouraged everyone else to tell stories of terrible parties, and then to share memories of great ones, like Sarah’s 21st, at which Dad skipped around the Bluegum Crescent house for hours, filling peoples’ glasses of champagne.

And so just for a little while, last night was one of our great parties, too.