Tag Archives: primary peritoneal cancer

In the trenches

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.

crochet_guts_wip_webHere’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

Steroids are cool

It’s Thursday! Blog day! I’m feeling chirpy and this is the direct result of a dose of steroids. I finally got to have my second chemotherapy session yesterday morning. I turned up at 1pm on Tuesday, as per my appointment, and got strung up to the cannula. My veins were as plumped-up as they could be (drinking gallons of water), but there was still a lot of angsting over their smallness, buriedness and general unsuitability for the cannula. Then there was the waiting around. Waiting, waiting. What’s happening? A worry over my platelets. Still not enough of the buggers. What to do? The nurse tried to track down my clinical trial coordinator, who was busy. “So many patients!” she exclaimed, later, when she finally materialised. According to her, I had enough platelets to go on with. But it was now nearing three o clock in the afternoon. This place – big blue comfy chairs, people sitting quietly with relatives and friends, in various shades of cheer and gloom – was called a Day Suite. I knew my chemo drip would last four, maybe five hours in all. What is the definition of the end of the day, for a place called a Day Suite? “How long will you be here?” I asked my assigned nurse, who had a beautiful Irish lilt. “I’ll be going at 4.30,” she said, “but there’ll be someone here after me; they’ll stay until the last person is finished.” Okay then. More waiting. And then, a rash of apologetic faces. They had suddenly discovered that I was to have a long drip, not a short drip, and there simply wouldn’t be time. The Day Suite really did close at 5pm, or thereabouts. The Irish nurse had assumed I was having a short drip; I’d assumed she’d known I was having a long drip. There was nothing for it but to withdraw the needle and untie me from my machine, get out of the blue chair and head back to Newtown for the night. I love my doctors, nurses and specialists – and Medicare itself – but I’m finding that intra-hospital communications (and hospital food) leave a lot to be desired.

The next morning (bright and early at 8am), everything went as smooth as silk. We (Steve and me) left the hospital at about two thirty and drove straight back to Bathurst. Picked up the dog from his second home at Kirsty’s, made a tuna bake and settled in to watch telly. It was an evening feast of medical shows – RPA, featuring none other than Professor P, my very own Upper GIT* specialist! He was giving a woman a liver transplant; getting right in there getting a hand-hold on the bad, lumpy, misshapen liver, lifting it out, putting a nice smooth one in (from some other poor sod who’d just died). I’m looking forward to having him get in and work on my own upper GIT tumour, my dark horse that has not been biopsied, that we are only assuming is made of the same stuff as my lower tumour. We had a good chat when I met him in his rooms across the road from Westmead hospital. He was wearing a pink pin-striped shirt with skull cuff links. That’s right. Skull cufflinks. He said he’d probably die of some evil cancer himself, when he’d prefer to go suddenly from something like a cardiac event. He said his goal was to reach the age of 84.

I’m enjoying the steroids. They’re carrying me through these days; expecting to crash out on the weekend (judging by the delayed reaction last time). Dawn will be coming up from Canberra to be in attendance and bring me cups of tea. I’ll just lie around on the couch. And then, by early next week, I should be coming good again.

Being on steroids is reminding me of the Sydney Olympics in 2000, and the torch-bearers running from Enmore Road into King Street in the People’s Republic of Newtown. There was a big crowd outside The Hub, the erotic cinema no-one was ever seen going in or out of (now being gentrified, of course). The crowd was chanting, “More drugs in sport!” The look on the torch-bearers faces, once they realised what was going on, was priceless.

Nicely pumped up on steroids, I don’t feel ill enough to be writing an “illness narrative” (like anatomical craft, it’s a Thing & you can find it all over the Internet). So I’ve gone back to “work”, while I can – belting my Songs for Kate doco into shape before sending off to Ronin Films for distribution; writing a review of Franzen’s The Kraus Project for the Newtown Review of Books. I’ve put “work” in inverted commas because these are my projects for love, not money. It’s actually good to have time to work on them, now that I’m free of most of the work that involves getting money.

*Upper GIT = Upper Gastro-Intestinal Tract

On baldness

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.

From wellness to sickness in one afternoon

Right now, I look fabulous. I have a full head of hair; my gums and fingernails are pink; I’m nice and plump. Next week, I’m going to have to surrender this wellness. I’m going to have to walk through a door into a big room full of comfortable blue recliner chairs, sit myself down, and hold out my arm to receive my poison. After that, my hair will start to fall out, I’ll feel sick, I’ll look sick. Time to howl at the moon! Yes, despite all my preventative surgeries, I’ve been unable to outrun the effects of this BRCA1 gene mutation. I’ve been diagnosed with primary peritoneal cancer: rare, advanced, aggressive. You’ve probably never heard of it, but you may have heard of its close relative: ovarian cancer. Arrrrgghhhh. And I mean arrggghhh. Not the light-hearted arrgghhh of the car won’t start or the computer’s crashed. I mean the big-time, loudest-volume arrrgghhh; one that can be heard down the end of the street.

I’ve been wondering whether to blog about this thing. After all, it’s a great story, with a strong first act turning point, a second act full of advances and retreats, hurdles and hopes, and a third act … As a writer, I’ve got something juicy right here, right inside my guts. All I have to do is spill my guts and I’ll have something. On the other hand, it’s hard to go public. It’s been hard enough as it is, dealing with the waves of sympathy and concern from close family and friends. I’ll be pottering along, forgetting all about it as I compose a tweet or delete penis-enlargement spam, when I’ll get a call and suddenly I’m right back inside the wailing and gnashing of teeth. Going public – letting “everybody” in on my story (my seven blog subscribers and whoever else randomly lands here) could be a big mistake. And yet, I’m doing it. Writing is a compulsion, and a comfort, and to write properly I need at least a sense of an audience, if not an actual audience. So here we are. Let’s see what happens.

So, what happened? Just like countless women with ovarian cancer, I did have strange rumblings and twinges and oddnesses and feeling tired and wanting afternoon naps. But like so many women, abdominal discomfort was nothing new for me. So easily discounted, so easily put down to other things. My father died last June, and there was the funeral, and other family emergencies and problems, so I put my tiredness down to grief and stress. I put my naps down to laziness. I thought I had a gastric bug. But all so mild, no big deal. It’s only in hindsight that I can see what was going on.

Meanwhile, I’d emptied out my pink BRCA1 folder with all its warnings and information and dates of surgeries and reassigned it to “Planning”. Planning as in, goals and ideas. Good use of a newly empty pink folder. Having had preventative surgery (breasts off, ovaries out), I truly thought I’d sorted my cancer risk. I vaguely knew about the risk of other cancers associated with the BRCA1 gene mutation but these risks were tiny. For example, only one percent of BRCA1 carriers get primary peritoneal cancer. So I wasn’t going to worry about that. No, my vague symptoms had to be related to something else. Maybe I had a thyroid problem? I convinced my GP to send me for thyroid tests. All normal. Maybe the hormone replacement medication I was given after I’d had my ovaries out (a “bilateral salpingo oopherectomy”) wasn’t settling properly. Maybe I’m just lazy and really enjoy naps. Because I worked from home most of the time, I could sneak them in after lunch.

I was in my GP’s room for something else when she exclaimed that I was as white as a sheet. Yes, I’d noticed that morning, in the mirror, that I was looking a bit pale. She sent me for a blood test, and then called me personally because my haemoglobin count was down to 80 when it should be about 112. Bizarrely, she was talking about a blood transfusion if it got much lower. I set off on a three-day video shoot. I was now beginning to feel as pale as I looked. Everyone else did the carting of equipment. When I got back, I had a CT scan of my abdomen. This involved drinking a radioactive substance and going in through that big white talking doughnut machine (“breathe in, and hold” … “you may now breathe normally”). I was still not overly worried. My friend Dawn was for some reason driving up from Canberra to be with me as I got the results. I thought this was a little over the top but I let her do it. I sat in the waiting room, waiting for the radiologist to come out with my scans. I did not like the look on his face. It was the face of a concerned person trying not to look concerned. He handed me the CD and said, in a tight little voice, “Stay in touch with your doctor.” Now I was worried. Dawn would be arriving soon. I was not going to run home and peep at the scans on my computer. I was going to go back to the GP at twenty to five with Dawn in tow, to hear my results.

My GP greeted us cheerfully – things can’t be that bad – and then we got down to business. She assumed I’d seen the results in the meantime and so she picked up the thread way further down the line than we were ready for, plunging straight into a chaotic discussion – chaotic because interrupted by alarmed questions and clarifications – about two tumours, one up near the stomach and another down low in the pelvis. The what? The two what? Tumours? At this point I couldn’t bear to hear more. Dawn grabbed the piece of paper from the doctor and read it silently, because I was saying I couldn’t bear to hear too much detail. Forget the detail. Detail is cruel.

When Steve got home from work they went into a huddle because I still wasn’t up to the detail. Dawn talked him through it. Then what did we do? I can’t remember. I was passing from one world into another: from the world of the well into the world of the sick. On January 25, I wrote in my exercise book: “I am marked. I have an X on my door. I’m a tree that has been sprayed in flourescent pink paint, waiting to be lopped.” I spent time in the Bathurst Base Hospital, getting blood and iron transfusions that immediately brought back my pinkness, being visited by friends, getting flowers; I was sent in the front passenger seat of a patient transport vehicle – chatting to the nurse and driver all the way – to Westmead Hospital in Sydney, where I was parked for about a week while they tried to decide what to do with me; I listened to the stories of my fellow patients, all poignant; I listened to lonely, needy people who would start talking as soon as you caught their eye, talking, talking, talking because there was someone there to listen; my sister Deb and Mum and seven-nearly-eight-year old Max visited, bringing knickers and three sets of new pajamas; friends visited; different doctors appeared at my bed asking me to tell the story of myself, again and again. Another scan. A biopsy. The results. Specialists. Steve was with me all this time, or most of it, sitting in chairs for hours while I got to lie in the comfy bed. Mostly, we waited. We waited for doctors, we waited for news, we waited to be admitted, we waited to be discharged.

I was let out into the world for some of this waiting. We stayed with Larissa in Newtown, with two kelpies. The colour and diversity were kaleidoscopic after the greys and whites and beiges of hospital. I loved everything: Larissa’s tanks of rainbow fish and guppies, fresh cherries, sunlight filtering through leaves, the sound of rainbow lorikeets supping on the grape vine, people, dogs, the tiny Belljar cafe in Alice Street. A drive to Coogee Beach, with intense blue sea, intense blue sky, white sand, waves crashing on rocks, seagulls sipping on fresh water running out of a drainage pipe. Camp Cove beach. Bradleys Head with Mum. Colour and nature. The sea. Rocks. I just wanted to sit and watch timeless water crashing against timeless rocks.

So, what’s next? Next week I start chemotherapy. I’ll have three blasts of it at three-week intervals. This will be administered out of the Crown Princess Mary Cancer Centre at Westmead Hospital, so we’ll be driving back and forth (about three and a half hours each way) and staying on and off in Newtown. The idea is to shrink the tumours down so that they are easier to operate on. Then there’ll be my big “debulking” (horrible word, but that’s the one the doctors use) operation and recovery. After that, another blast of chemo to mop up. None of this will be pretty, but I do feel I can cope. I’m up for it.