Tag Archives: primary peritoneal cancer

Fully debulked

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On Tuesday I was wheeled in to the Theatre of the Abdomen. Five hours later, I was wheeled out missing various body parts; fortunately they’re all bits that we can live reasonably well without. I’m now semi prone on my hospital bed typing this with one finger. One of my surgeons liked the plastic bag of crocheted abdominal organs; the other hasn’t seen them yet. And now I’m going to sign off and go back to drifting in and out of painkiller-land. I’m hoping to have my brains back by next Thursday.

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.

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.

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

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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

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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.