Category Archives: Craft

This is where I live

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.

Once more into the doughnut

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I had to go back through the doughnut hole yesterday. It’s the big white machine that talks to you (“Breathe in and hold.” Pause. “You may now breathe normally.”) while you are shunted in and out like a tin of tomatoes on a conveyor belt. I really didn’t want to go. I drove on auto-pilot to the Russell Street Medical Centre and was trying to park when I realised I was in the wrong spot. I should have been at the PRP Radiology clinic in Bentinck Street. The business of getting to this appointment was taking me back to that chaotic day in January when I had a CT scan and then innocently went off to my GP who assumed I knew about the results and started talking about two tumours as if they were old news. Traumatic. It was only yesterday that I realised how traumatic this had been. Fortunately, yesterday’s scan was easy peasy. The needle went straight into my vein without any mucking around, because I knew to drink gallons water beforehand. As the radiologist pumped dye through the cannula I felt, without alarm, the weird sensation that feels like you’ve peed yourself (you haven’t). Before I knew it, it was all over. He was packing me up and sending me out and saying the CD would be waiting for me at the front desk. I told him I did not want the CD because I didn’t want to be tempted to look at it before my specialist sat me down to talk about the results. When I go to see the specialist tomorrow (she’ll have picked up the results online), I’m going to say, as soon as I walk in: “I don’t know the results of my latest scan. Be gentle with me.” Later, once everything has been settled, I might go and pick up the CD. By the time I look at it my abdomen will have been radically re-arranged so it won’t matter any more.

So, tomorrow I’ll be getting some important information. I’ll find out if my three chemo sessions have successfully shrunk my tumours, and I’ll find out if I’m well enough to be operated on next Tuesday. All very daunting. Fortunately, I’ve been able to throw myself into crochet! I’ve almost finished my guts. I’m going to stitch them into a brown cushion that will just look like any old brown cushion on the sofa until you unbutton it. I’m dithering about whether to take my bag of guts with me to the specialist. I’m wondering if my surgeon will be impressed or just think I’m wasting precious time in the consulting room. I guess it doesn’t matter either way – my woolly guts have helped me enormously. In making them I was able to learn a lot about my internal organs, say a provisional goodbye to some of them and enjoy the take-your-mind-off-things absorption of a pleasant, creative task.

Today is World Ovarian Cancer Day. The big message is to be aware of the subtle symptoms of ovarian cancer, which usually try to pass themselves off as something more benign, like indigestion, constipation, a feeling of fullness after eating, and so on. Most women are only diagnosed at a late stage, once the cancer has spread because they and their doctors spend months (or years) working through other theories. While my own cancer is called “primary peritoneal cancer” it’s exactly the same as ovarian cancer (it’s just that the origin is in cells attached to the peritoneum, not the ovary), so I consider myself a member of Team Teal.

: It just looks like a brown cushion with a teal button.

: Open it up, and you find a woolly collection…

: The yellow frilly bit is my representation of the greater omentum. It hangs from the bottom of the stomach and acts like a little protective blanket over the intestines. The pink and white thing is the uterus. It’s way too big, especially in relation to the tiny large intestine. I used a pear pattern as a model, and I didn’t realise how big the finished “pear” would be.

: This is how I’ve made a visual representation of my 5cm bottom tumour. It’s in black and a sort of flouro greenish-yellow. It’s made up of straggly bits, like a bad pom pom – representing bits of cancerous material that threaten to drop and spread. The bottom tumour is in the Pouch of Douglas between the uterus and rectum. There’s nothing sexy about ovarian cancer.

: The uterus, bottom tumour and omentum have been removed, as they are likely to be during surgery next week. This shows the position of the first tumour which sits between the stomach and liver.

: The spleen and gallbladder were made to patterns by Sarah Louisa Burns, a New York actor who has a quirky little shop on Etsy. The pancreas (I know, a suspicious looking beast) I designed myself! https://www.etsy.com/au/shop/AnOptimisticCynic

: Teal button detail

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.

In the trenches

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Major extended family arrival today – three adults and two small children – so I’ll keep this brief. I say this like the busy person I was just three months ago. I’m not busy at all these days, but I’ve still managed to run out of time to get things ready. What things? That’s part of my problem: what things, exactly? I have a great sense of urgency combined with very little focus. Anyway, Easter’s history, along with the ghastliness brought on by my last chemotherapy session. Now it’s the eve of Anzac Day and I’m out of the drama of feeling utterly horrible and back into daily life in the trenches of cancer treatment. I can metaphorically (and literally, I suppose) play cards and learn French, as the off-duty Anzacs did between calls to go Over The Top. Actually I won’t learn French. Ever. Serious illness has relieved me of a whole lot of shoulds (learn French, read Ulysses). But I will crochet, because it’s really helping.

Here’s a pic of work-in-progress on a representation of my guts. Not to scale or colour, obviously. The bit I’m most proud of is the small intestine. Most beginner-anatomy representations of the small intestine don’t bother to show the mesentery, the curling structure that attaches the intestines to the back of the abdominal cavity and feeds them arterial blood (see pic of mesentery of autopsied cat). I’ve discovered that the mesentery is best represented by hyperbolic crochet, the same technique used to represent the Great Barrier Reef in the Crochet Coral Reef project. From small attachment points, the mesentery fans out, ruffles and folds back on itself, allowing the small intestines to do the same. Hyperbolic crochet is mesmerising and very relaxing.

I’m scheduled to go Over The Top again on May 13. This is when I’ll be opened up from sternum to pubic bone while two or three (upper GIT*, gynae-oncol and possibly colo-rectal) specialists work on extracting my two tumours. As I crochet my threatened guts I’m learning so much about them – what they are, where they are placed, what they do. I’ll be making two tumours, too. Not sure about the colours or how to make them look horrible enough.

*Gastro-Intestinal Tract

Ghastly.

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Ghastly. Hideous. I made myself get up off the couch to write just two or three sentences. Now that I’ve completed them I’m free to go back to the couch. But I’m here now, so I may as well do a few more. Had my third chemo session on Monday, followed by two days of being gloriously pumped up on steroids, during which I pottered manically around the house doing things. Not sure what, now. I know I ended up with a box of mixed sequins that I sorted into separate colours. By lunch time today the steroids were wearing off and I was back into the now-familiar searing pain in ankles, knees, hips, wrists. Hey, bearing in mind the reason for this holiday, what does that remind you of? Yup. I found myself lying on the couch reading Wikipedia on the iPhone, about the medical interpretation of death by crucifixion. Very interesting. Now I’m just waiting for Sunday (or before, would be nice), when I can ascend from the couch. Actually, just before the steroids wore off today, I did manage to do some good in the world: I took some pompons down to the burnt church on the corner and did a tiny bit of yarnbombing. I decorated around the edges of the hand-written sign that says, “The fete will STILL BE HERE on April 26.” (I shouldn’t be mentioning this – true yarnbombing is anonymous.)

In the meantime I’ve been inspired by Helen and Ray’s rabbit Mimi, who was found paralysed a couple of weeks ago but refused to give up the ghost. She’s now lurching around the house. “Every day she makes tiny improvements,” says Helen.

And to continue my semi-delirious Easter theme, here’s another panel from my Waste to Art entry. It’s my fallen hair with bits of scrunched-up paper from an old journal. A crown of thorns becomes a nest with eggs in it.

The squawkin' galah

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