Category Archives: family

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.

Last night I was a red head

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The thing about baldness is that you have a blank palette from which to begin to create new looks. I’ve never been much bothered with new looks – I wore straight brown hair parted down the middle forever – but now that I’ve been led here by chemo-induced baldness I’m quite enjoying it. I went to a friend’s place for dinner last night in a cloche hat and curly red hair and a big green vintage coat. I watched as a very close friend’s eyes skated over me without recognition. I was invisible; someone new; someone else. A fly on the wall; an occupier of liminal space. But then she did recognise me and everything jolted back to normal. We resumed our long-running discussions about art, illness and crochet.

Then I hobbled home in the dark. My left knee has been giving me hell. I think the chemo is eating away at my cartilage, or I have fluid retention, or something. And so I return to Dr Google, typing in search terms like “sore knee chemo” to see what others have to say on the subject. What they say is that chemo often causes sore knees. Besides the knee, I’m in a bit of a dip all round. Everything is an effort, today. I’m in slow motion. Next Wednesday, I’ll be having another CT scan to see what the three rounds of chemo have done to my tumours. I’m alternating between confidence and apprehension.

Last Tuesday, after a wild weekend with my relatives (enjoyable wildness involving two small boys, possum hunting and a dramatically crashing and splintering glass object in a shop that had to be paid for), I took my Waste to Art entry up to the Flannery Centre for the exhibition that opens tomorrow. As a work of art it’s lumpy and unresolved (aka ugly) but as a project it has been enormously satisfying. And through it, I’ve discovered pen and ink! The kind you have to keep dipping into an ink well. Oh fun! Oh beautiful scratchings! Here it is:

: A new journal created from the old. Each page is made of paper recylced from an old journal. The pages are bound together with lengths of an old bed sheet.

: An introduction on the inside sleeve.

: The Table of Contents.

: Red Blood Cells. This is where it all began: I was pale and anaemic, and my GP sent me off for tests. These were made from the little donut-shaped cushions you find in blank CD or DVD towers.

: OMG WTF. In the morning, I just a person with anaemia; by the afternoon I’d become a fully-fledged member of the Dangerously Ill club, but there was not, as yet, a diagnosis.

: The Greater Omentum. With a diagnosis of primary peritoneal cancer, a form of ovarian cancer associated with the BRCA1 gene mutation, I discovered that I would probably lose my greater omentum. I hadn’t ever heard of the greater omentum.

: The Pouch of Douglas. My bottom tumour’s location was in the Pouch of Douglas. Again, I hadn’t been aware that I even had one. The Pouch of Douglas was first described by the Scottish anatomist James Douglas way back at the end of the 17th century. Douglas got caught up in the Mary Toft sensation, in which a woman had claimed to give birth to rabbits. Douglas called her out on it, saying she had as much liklihood of giving birth to rabbits as a rabbit would be to give birth to a human child. She was found to have put baby rabbits up herself, mimicked labour and called her local doctor, who believed her. Thanks to Mum for cutting out and sticking down all the little rabbits. The original drawings are by William Hogarth; work in the public domain, retrieved from Wikipedia.

: St Angelina of Hollywood. This is a mash-up of Angelina Jolie with images of St Agatha, a Christian saint who was tortured by having her breasts pinched off with pincers. Angelina Jolie has the BRCA1 gene mutation and has had a double mastectomy and plans to have an oopherectomy (removal of ovaries) to reduce her risk of cancer. Such surgery vastly reduces risk but doesn’t, as I have unfortunately found, eliminate it.

: Chemo.

: Easter. Little bits of scrunched up paper from my old journal represent cancer. I kept a bit of the hair that fell out of my head after chemo. This piece is reminiscent of a crown of thorns, but also a nest with eggs in it.

: Easter (detail).

: Pedigree. This was the most moving of all the pages I made for this journal. It shows the flow of the BRCA1 gene mutation from my grandfather (Pop) on my father’s side, down through Dad and his sister Joyce, and on to the next generations. The young children have question marks under their names, because we don’t yet know if they have inherited the BRCA1 gene mutation. My cousin Sharon died of ovarian cancer in the 1990s.

: ANZAC Day. On ANZAC day I always think of Simpson and his donkey, because that was what fired my imagination when I first heard about the Gallipoli landing in primary school. This year, I felt the bodily suffering of Easter and ANZAC Day more intensely than ever before.

: Surgery. Surgery has been set down for May 13, although this may change. You can turn the little plastic sheets (representing the “glistening, transparent peritoneum”) to reveal abdominal organs, some of which will be cut out, and others that will be kept. Some, like the stomach or the liver, may be snipped at around the edges.

: Where is MH370? For me, these weeks will always be associated with the endless, unsuccessful search for the Malaysian airlines plane that went missing in the vast Indian Ocean. A reminder of how little we can really control or know about.

: Names of Flowers. Sometimes when things are really difficult, I find myself repeating the names of my favourite flowers. They’re all hardy flowers, the ones I grew up with in subtropical Carnarvon, WA.

: The journal can be displayed like this. I’m hoping those setting up the exhibition will allow people to touch the piece and turn the pages.

On baldness

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I’ve boldly titled this post “On baldness” as though I am an expert, when in fact I’ve only had personal experience of it since Monday. What started as a trickle of hair soon became a waterfall. I was going around absentmindedly pulling out great hunks and then having nowhere to put them. I’d weave them into a circle and put them in my bag, or scan the horizon for the nearest public rubbish bin. Or, if it was just a little bit, I’d let it float to the ground, mentally noting that hair is biodegradable. When I got up to Wyong on Monday, with hair floating around my head but only some of it attached, Deb (sister) advised it was time to take preemptive action. She got out her buzzing clippers, and within a couple of minutes it was all on the laundry floor. My scalp was now a patchy landscape of bristles and interesting features normally hidden. On the side of my scalp above the ear, a fairly large V-shaped scar. We worked out this must have been from the time I was four years old and sailed through the windscreen of the family Volkswagen after Mum slammed on the brakes to avoid a taxi. I do remember it – not going through the windscreen, but sitting on the footpath afterwards, and a woman looking at me saying, “There’s blood all over her!” And moles. I have moles on my scalp. Deb had to buzz around them. She briskly swept up the hair and emptied it into the bin before I could explain that I might need it for … for …. something. All that hair. Going to waste. What about crochet? No, it’s in the swing-top bin. We’ve moved on. Then I was handed the reddish-brown Chrissie Amphlett wig, the one Deb was given during her own chemo for breast cancer. It wasn’t too bad. I didn’t look like me, but I looked like someone, and that person didn’t look bald, so it was all good.

Then we were off on the school run to pick up the two little nephews. I was standing near the gate, parents and children trooping up the path, when Max caught sight of me and announced, in ringing tones: “This is my aunt! She hasn’t got any hair! She’s wearing a wig!” A mother shot me an appraising glance and said, “It looks quite natural.” The other nephew didn’t notice.

When Steve finally saw me he was disappointed that I didn’t actually look like Chrissie Amphlett.

Since then, I’ve been wearing scarves or caps around the house, and the wig out. I was wondering whether to be a wig person or a turban person in public. So far the answer is wig. I think everyone is looking at me, thinking, “wig”. When they’re probably not. Or maybe they are. And then, in the privacy of my own bathroom, I make studies of myself in the mirror. Hairless. Apparently I was a bald baby for a long time, like about 18 months. I’ve come full circle.

I’ve still only had one chemo session. My second session was supposed to be last Monday, but my platelets, neutrophils and haemoglobin had not bounced back enough from the last blast. So I’ve been put off until next Tuesday. I’m enjoying the extended leave-pass from the effects of chemo, but I’d rather be moving on. I want things to go to plan. But I’m learning that things rarely go to plan with cancer treatment, so I’ve got to get used to rolling with it. (What the hell’s a neutrophil? It’s a “white blood cell”; made in the bone marrow; keeps your immunity up.) The good news is that my CA125 levels (“tumour markers”) plunged from 2800 on the 7th of February to 1500 on March 6th. This means the tumours took a bashing after the first chemo. Excellent.

Meanwhile, as promised, I have begun to fashion small intestines. I’m using a French knitting contraption from Spotlight. I enjoy sitting and mindlessly lengthening my intestines (as long as I don’t go over 7.1 metres, the average length of a female small intestine). I’ve discovered a whole world of anatomical craft out there on the Internet. Some of it is truly stunning. Take a look at this, for example.

And I’ve got all excited about this year’s Waste to Art exhibition (see entry in last year’s exhibition, here). I have a stack of exercise books full of moaning and self-absorption that I want to get rid of. I’ve been burning them, page by satisfying page, but I’ve also started pulping them in the blender and making recycled paper. The combination of red and blue biro in them is giving rise to a lovely light lavender shade. I’ll stitch the pages together and write on them, or draw pictures on them, and that’ll be my entry. (Note: I’m keeping the odd bits of brilliance to be found in those diaries, but most of it really is mental junk-mail.)

And I’m glad the Sydney Biennale cut ties with Transfield. Yup, it’s a big bugger for a lot of artists and art-lovers, but if we’re a society that chooses to have a billion-dollar detention centre on Manus Island, we have to expect a bit of fall out. It might be uncomfortable, possibly misdirected, expensive and unfair … but then, that’s Manus Island all over.

Ignore my last blog post – technical glitch!

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Hello my dear subscribers – there are now more than 7 of you, which is lovely. Hey, just ignore my last little blog post about my poor old grandmother. She did, indeed, have a stroke, and a few months later she passed away – but all this was going on in 2001 and is very old news indeed. I made the mistake of “fiddling” with the past on my blog, thinking I could add bits here and there without having an email notification going out, but this didn’t work. Drat. Now feel silly. Anyway, now that I’m here, I’ll give a little update on how I’m going now: Most excellently! Last Thursday was a post-chemo low point; after that I started feeling much better. I now feel more or less “normal” and I’m lapping it up! Tx

The squawkin' galah

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