Category Archives: Carnarvon

Brought to you by the letter P

Today’s blog is brought to you by the letter P, as they used to say on Sesame Street. P is for pancreas. Here’s my pancreas Before.
By now I’d meant to alter my suite of crocheted guts to explore how they’ve changed before and after my debulking surgery, but the pancreas is as far as I’ve got. Before surgery I’d crocheted it free-form, without a pattern, learning how to do the bobbly bits on YouTube. This morning I pulled out some of its stuffing, poked the tail in on itself and sewed it off with black wool. And here it is, After.
I’m scared of my pancreas. It apparently disgorges acids that can eat through soft tissue, and if threatened can cause diabetes or make it hard to digest fats (chips!). Pancreatic cancer can carry you off very quickly, as happened with our wonderful local Independent federal member of parliament, Peter Andren. In hospital, before my conclusive diagnosis, Professor P casually said he hoped it wasn’t pancreatic cancer because it wasn’t really treatable and I’d be better off with ovarian cancer. So I was suddenly, bizarrely, hoping like hell I had ovarian cancer. Now, I’m trying to make friends with the remains of my pancreas (Professor P chopped off its tail on May 13) but it’s a hard call. It feels like an angry animal that might turn on me if I relax.

P is also for Pink Pills for Pale People. And for Patricia, my childhood friend from Carnarvon, whose family used to run Fong’s Drapery. She turned up here in Bathurst on Monday, just as I was falling into the ghastliness of a post-surgery blast of chemo. Tricia was asking me if I remembered the day we went into a temporary antique store on Stuart Street, in what used to be an old boarding house, where I bought a tiny bottle stamped with the words Pink Pills for Pale People. I didn’t remember the shop, or the day, or the bottle. Nothing was surfacing from the memory banks, nothing at all. Tricia wondered if we still had the bottle in the family. I said Mum might still have it. Then I remembered that just a few weeks ago, Mum had given me boxes of shells, feathers, rocks, driftwood and old bottles for safekeeping until she was sorted in her new home. I looked over at my display cabinet and saw three tiny bottles. I walked over, picked one up, and there it was: Pink Pills for Pale People.

Yesterday morning, I was a very Pale Person. After a hot shower I was standing there in the bathroom dealing with my weird post-surgery abdomen when I started listing and the world went dark. I hung onto the wall to stay upright and then Steve helped me slide down, slowly, to a position sitting on the floor. I saw myself, bald and miserable on the bathroom tiles, and felt Pissed Off (there’s that letter P) that all this was happening and that it was happening to me. But I didn’t actually faint. After a few minutes, even without a pink pill, I felt my paleness lift. Tricia made tea and toast with Vegemite, which revived me quickly, and a community nurse turned up and took my blood pressure and pronounced me not too badly off considering. Later, we drove up to show Patricia Bathurst from the top of Mt Panorama, and I looked out at the late afternoon sunlight picking out the shapes of the town and felt Peaceful. Really.

This is where I live

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I’ve lived in a lot of places. Carnarvon, where red desert meets blue Indian Ocean. Prague, where white swans skate over the frozen Vltava River in winter. Bathurst, where I live now, with its rolling hills. But now, since surgery, I know that the first place I live, always, is in and through this body.

I knew the surgery had to be radical to remove my two tumours, especially the meaty one sitting between liver and stomach. Crocheting my body parts, I understood that they were threatened. Even so, the final count was shocking. Here’s the list:
* Part of stomach
* All of spleen
* Most of the tail of the pancreas
* The greater omentum
* The uterus (already skinned of its Fallopian tubes and ovaries)
* About half of the large intestine running from the top left corner down to the rectum.

The surgeons call this sort of ovarian cancer surgery “debulking”. The word “disembowelling” could be more apt.

I had a gynae oncologist working at the south end and my upper GIT specialist working up north. They worked together, flanked by their teams of apprentices and nurses, for five hours.

Afterwards, my upper GIT told me he was concerned he’d gone too far. “No, I wanted you to be radical,” I said. “There’s a difference between being radical and being a butcher,” he said. The problem for him was that even as I lay opened up on the table, nobody knew the nature of the upper tumour. It might even be benign, in which case radical action would be overdoing it. (Unlike the bottom tumor the top one was in too awkward and dangerous a position to biopsy beforehand.)

The pathology report, a few days later, revealed that the upper tumour was made of the same serous carcinoma cells as the bottom one. So it was just as well they’d gone in hard. Both surgeons said my particular presentation of cancer was highly unusual: no sign of lots of tiny tumours sprinkled through the abdomen. They said they’d been able to “get everything”.

Wow. I’d been secretly terrified of “peek and shriek”, where they open you up, sadly shake their heads and sew you up again. This is what happened with Uncle Frank in the early ’70s. The cancer had “no beginning and no end”, apparently. We don’t know if he carried the BRCA1 gene mutation, but I suspect he did.

The experience was grueling, not just for me but for my nearest and dearest. I was kept in recovery for five hours after the operation itself, and every hour I didn’t appear in the ward increased their anxiety. Eventually I did appear and I even sat up in bed chatting. I can hardly remember that now.

The next day, the pain. In my shattered state, I got myself thinking too much about how I should respond to this question asked by the nurse: “How would you rate your pain out of 10, if zero is none and 10 is the worst pain imaginable?” So I pondered the worst pain imaginable. Being burned at the stake, thrown into boiling oil … I compared these to how I was feeling. Utterly shocking, but a long way from the boiling oil. “Five?” So I suffered for about three hours, accepting it as part of the process of being gutted. Then the pain management team came round and put it differently: “Is your pain little, moderate or severe?” Severe, of course. They upped the painkillers and the day proceeded more smoothly.

Within a couple of days I was eating, sitting out of bed and walking up and down the corridor, drip stand in tow.

Then at midnight on Saturday, I had a temperature of 38. They started worrying about pneumonia. A young learner doctor (I could just about see the L on her forehead) dug around in the crook of my right arm, failing to find a vein. Something inside me began to unravel. I lost faith. Strung up on an antibiotic drip, I started feeling wretched. I was feeling queasy, which I find a worse sensation than simple pain. The next day, I started hurling. Green bilious vomit. Everywhere. Standing in the bathroom hosing myself off with the shower hose, only to get to the door and hurl again – pure misery.

And then – the magic of the thorough purge – I started feeling better.

For the next two days I cried at the drop of a hat. I cried about the miracles of life and love and body. I cried about my whole life.

At 5am Tuesday morning I opened my eyes and – I felt well! I was bathed in well being. Dawn light through the blinds. I felt a surge of creativity.

I typed into my iPhone:

“The first place is this body, made up of the descendants of ancient bacteria, fish parts. This temple, made of fish parts.”

I’m writing this on one finger on an iPad at my friend Larissa’s house in Newtown. Lisa B is here too, all the way from Brighton in the UK. And Steve, who sat in a chair next to my hospital bed all that time. We’re all watching Masterchef. Eating meatballs and pasta. I’m back in the the world again.

So, how do you live without a spleen, without half of your large intestines? The answer is that I’ve got a new body that operates differently. It’s back to the crochet hook for me, to process and absorb this difference.

Loquats

Twenty things

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1. This morning Kirsty Lewin and Marcus and Enya the dog and I went off on a bike ride. Kirsty and I on bikes; Marcus on the back of Kirsty’s bike in his own baby seat and Enya either running along beside us or trotting at the end of her leash which was in turn looped over Kirsty’s handlebar. I felt sorry for Bertie, who was missing out on this experience on account of being completely hopeless.
2. Lorikeets in Perth: now pest declared. Last week (or was it the week before?) I was walking up the big main driveway at Curtin University, once the WA Institute of Technology, and noticed all the lorikeets. Things felt different. There was still that distinctive pine tree smell that will always make me think of my earliest days at WAIT in 1981. WAIT was built on the site of a pine plantation in the 1960s. There are still some tall plantation-era pines but not as many, the smell not as strong. Gardens were lush, plantings mature. That’s not how it was in 1981. And there were none of these lorikeets. You expect some things to stay the same, even if buildings and cars and fashions change. You expect to come back to the same smells, the same air, the same background of bird call. That’s what it’s like around Carnarvon, up on Brown’s Range, listening to the chiming wedgebills, aka Did y Get Drunks. Superficial things change but that particular birdcall, that red dirt, those seed pods on the acacia bushes, strip away the years or make them irrelevant. But Perth seemed to have shifted in some organic, fundamental way. The lorikeets were wrong. When I got back to Bathurst, I looked up the lorikeets and yes, they are strictly native to the eastern states. They are now taking over Perth, the result of an original flock kept near the University of Western Australia. Now they’re multiplying exponentially, eating grapes out of the vineyards, and they have been declared a Pest.
3. Back here in Bathurst, I find that the Mitchell Batteries man is studying to be a nurse.
4. The Mitchell Batteries man disagreed with the academic from some American university or other, interviewed on ABC Radio National’s Counterpoint program, who said the Internet was creating the dumbest generation ever. The Mitchell Batteries man, who sold me a $115 battery for the Subaru Outback, said the Internet enabled him to work by day and study at night. He was testing the battery by playing the radio; that’s how we both came to be listening to Counterpoint. He had a yellow trolley that he sat before the bonnet of the car. This trolley brought the new battery and received the old battery.
5. Still on the Subaru Outback: After I’d replaced the battery (this was yesterday), I took it to the Aquarius car wash on Durham Street. I heard something crunch but dismissed it. I enjoyed being soaped up and rinsed off and blow dried from within the comfort of my car. I drove home, came inside the house and looked back out the window to admire the clean car. I noticed the side panel was off the car. I made a mental connection with the crunching sound. I drove back to the carwash. Another car was just going into the bay, too late for me to do anything. I stood beside the plastic window and peered in, and there was the panel lying on the ground to the left of the bay. It was covered in suds. I had to wait until the car in there had finished. An automatic car wash bay is a no-go zone for an unarmoured human. A woman was waiting to drive her car in. I was standing there in front of the bay, peering in. I realised I was behaving oddly – standing carless beside an automatic car wash bay. I told the woman who was waiting what I was doing. I had to approach her car, and as I did so, she politely wound her window down.
6. I made Steve a DSB (drawstring bag) for his Nikon camera battery but it was about two centimetres too short for the job. So now I need to go back to the drawing board. I enjoyed making the DSB from a pattern I’d found on the Internet.
7. Bruce Fell, a colleague at Charles Sturt University, expressed sentiments similar to the academic from some American university or other at a seminar the other day. I such people a careful hearing but I secretly think they’re just old people who don’t want to update. They are resentful about the train slipping away from them; they don’t want to get on the train.
8. Bruce criticises the Internet from the Left; the American academic, I presume, was criticising from the Right. Bruce said he was concerned about not just the Internet but the whole use of social media by young people. They were online or staring at screens when they needed to be out in the real world, walking upon the earth. Bruce said there was an environmental disaster looming but young people who were entranced by technology were not going to bother acting to save the planet because they’d never physically engaged with it. They weren’t noticing the seasons; they were looking at little screens. In discussion time, I defended the new technological age. I agreed that we should be out walking the earth but said I also loved Google and Street View and Lolcats and Second Life and the ability to edit video in my own room and publish it on YouTube. Bruce said, why is it so good that everyone can publish on YouTube? Look at all the rubbish on it!
9. ABC Radio National has axed the Media Report, the Religion Report, Street Stories and Radio Eye. I read somewhere that this was all about relating to a newer Internet-focused generation and that shows like the Media Report and the Religion Report appealed to the over-50s and therefore not worth supporting. It’s terrifying when you read that appeal to the over-50s is in itself enough to render a thing obsolete. I’ll be there myself in five years’ time. Bruce might argue that the axing of the Media Report and the Religion Report are motivated by the same digital media forces taking over young people’s lives.
10. Just saw Burn After Reading. I can’t rave long or hard enough. The Coen brothers are the best. I love George Clooney, Tilda Swinton, John Malkovich, Frances McDormand and even – now – Brad Pitt.
11. It’s almost 9pm. We went to the 6.40pm screening at the Metro Cinema after scoffing a pepper steak and veges so we’d be there on time. We got there just in time for the opening credits.
12. The stock market has gone to hell in a hand basket.

13. I write this to the sound of Taro snoring on the carpet behind me. She smells of wet dog. Steve and Rosemary took Bertie, Taro and Jasper to the river for a swim while I went on gardening and starting the cooking so we’d get to the movie on time.
14. I’ve been yanking out couch grass.
15. The two vege garden beds are empty and waiting. Empty except for some valiant sage that kept on keeping on regardless of drought and frost. I dug out the beginnings of sunflower seedlings. The sunflower from two summers back had produced seeds and they’d fallen to the ground and now they were going to grow into a new sunflower crop but I dug them out because I was taking a take-no-prisoners approach (except for the sage).
16. I notice that the potted strawberries have survived absolute neglect and the tulips have struggled to put out a warped flower but the geraniums are utterly dead.
17. The succulents in the front garden are flowering in orange and purple. These pigfaces (narrow gauge) have been green and healthy for well over a year; only now are they doing the flowering thing.
18. Kirsty and I rode along the bottom of Mt Panorama, along Boundary Road, through some open land where people camp, have sex, take drugs and light fires, then through a housing commission area and back on to Browning Street. I turned left at William Street and Kirsty, Marcus and Enya turned right.
19. At Boundary Road an enormous kangaroo was standing up on its hind legs looking at us. Enya spotted and and gave chase. Kirsty screamed at Enya.
20. For my twentieth thing, I’ll give an update on the renos. Everything has ground to a halt, but the work is not finished and we have not moved in. I’m amazed that Steve is not going nuts about this the way I am. I’m completely over it. It’s been a year now, and that’s enough for me. We need to have a retaining wall built and some pavers laid. After that, we can have the floors sanded and polished (or oiled) and only then can we officially move in with the furniture and everything, and only then can I move in to my new office and start work on this room, which will become the guest bedroom. And we’re buying and installing an awning, but the awning guys are going to want a flat paved area to work on so the real snag with everything is the laying of the paving/building of retaining wall. After this, I’ll have done renovating for this lifetime. I don’t ever need to do this again.

Bob and Lisa and Tracy have a three way phone conversation

The squawkin' galah

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