Tag Archives: cancer

It isn’t easy being green (or pink, teal or purple)

I’m writing this with Australia batting against India in the background. Steve is standing behind the sofa watching, making “ooff” sounds, which is what he does when watching any sort of sport, whenever there is a significant movement.

On New Year’s Eve at Fiona Green’s place I found myself saying that this year I’d learn the rules of cricket. It’s weird when you hear yourself say something surprising. Where the hell did that come from? I can only guess it had something to do with Dad, who might have been hovering around in spirit – drinks and a big bonfire in a backyard could easily have attracted him. Dad always played and watched cricket and I always sidestepped it because to be honest it always seemed deadly boring to me. Men in white clothes standing solemnly around in the belting sun; the occasional flurry followed by more standing around. My evasion became a lifelong habit. But Steve likes to watch the cricket and when he does, there’s an echo of earlier times. And now I feel slightly bad about living through all these Australian summers and still not knowing the rules of cricket. So I’m going to give it a go. This will not be easy. I will have to fight a strong desire to immediately do something else. Like maybe arranging crockery shards by colour or size, in anticipation of one day making a mosaic table top. Or sorting old photos into albums. Rules of cricket. Why did I say that?

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When I sat down to write this I was distracted by the cricket. What I was really going to write about to today was Purple Day! Today is international epilepsy awareness day. Epilepsy makes the brain fire off in all directions, leading to fits and seizures. My little nephew Joey succumbed just after his third birthday with a particularly nasty form of the disease, the Doose syndrome, which is resistant to medication. He was having twenty or more seizures a day. These involved sudden “drops” or “flops” to the floor. He’d be conscious again immediately, and sometimes crying because on the way down he might have hit something hard like the edge of a coffee table or a concrete birdbath. So he took to wearing a blue helmet. At the end of 2013, a few months after Dad died, things got so bad that he

Joey with Hazel the therapy dog.
Joey with Hazel the therapy dog.

ended up in Sydney Children’s hospital for a long stretch. I remember going to see him there when he was visited by Hazel the therapy dog. I also went upstairs with him and Deb for one of his brain tests. His little scalp had electrodes taped all over it. And he was well and truly over it. Sick of all this crap going on. The good news is that a few weeks later, the seizures had stopped. He got all the way through last year, his first year at school, seizure free! Did the medication combo finally hit the right spot? Had he simply grown out of it? Nobody really knows. Today, in honour of Joey, I’ve purpled up my Facebook profile picture and I’m writing these paragraphs in this blog.

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Meanwhile, at the end of 2013, I wasn’t feeling that crash-hot myself. It turned out to be primary peritoneal cancer, a variation on ovarian cancer, explored at great length here in this blog. The awareness ribbon for this is teal. Shortly before that, Mum got in on the illness act with a spot of bowel cancer, which thankfully was removed all in one go in one operation, and she didn’t have to have chemo or any further treatments. Now, what colour is the awareness ribbon for bowel cancer? Could it be …. brown? Surely not. Must Google it. Back in a moment.

Wow. There are a lot of awareness ribbons. I guess there’s a lot to be aware of. “Use the search box to find your illness or cause”. Okay. Looks like blue or periwinkle covers the bowel. But using the search term “colon” does in fact bring up a brown ribbon! Speaking of bowel cancer, an ex boyfriend has been diagnosed with it, and is in for a long and involved treatment regime. Thinking of you (while not breaking your anonymity here!)

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After Deb got breast cancer (pink ribbon, everyone knows that) and Joey started having seizures and Dad died of pulmonary fibrosis and Mum got bowel cancer and before I was diagnosed with ovarian cancer, Deb did say, at one point, “What were we in a past life? Axe murderers?” We don’t subscribe to deserved illness theory any more than we subscribe to the deserved good fortune theory. But there are moments that make you wonder. Anyway, we’ve almost got a rainbow of ribbons, just in one family, and all just in the past few years. Before that we’d had a very good run.

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Which brings me, finally, to the green ribbon, or should I say Greens ribbon, that I’ll be wearing on Saturday, the day of the New South Wales state election. I’m not a member, but I’m happy to support the local candidate, Tracey Carpenter, who has been running a very serious and successful campaign. It’s actually not that hard being green, if you’re able to steel yourself against the waves of warmings and extinctions, fracking and fossil fuel-burning. I’ve been doing a spot of handing out how to vote cards at the pre-polling booth in Bathurst. A couple of weeks ago I went along with Tracey when she drove up to Rylstone in the north of the Bathurst electorate to meet and greet at the annual Rylstone-Kandos show. With iPhone in hand, I spontaneously decided to record her talking about her policies, as she drove. Here it is:

 

Hair!

It’s time to consider my hair. Oh – there’s that well-used phrase of the past couple of weeks. It’s Time. Okay, so I’ll start with Gough: I thank the Whitlam government for abolishing tertiary tuition fees. As a result, this daughter of a truck driver and seamstress grew up thinking it would be perfectly reasonable to go to university after high school. Which I did, followed by my sister. A few years later Mum, who hadn’t finished high school herself, got in on the act. We’re all now bristling with degrees and diplomas. At the time, we assumed this was just part of the march of progress; we had no idea that this door was on a spring; that it was always ready to slam shut again. And then there’s free universal health care, and ditto. The latest encroachment on Medicare is the proposal to let private health insurers run agencies that would oversee the work of GPs in Medicare Local services. In other words, the privatisation of Medicare, a reversal of one of the outstanding reforms of the Whitlam government.

In amongst the orgy of nostalgia and Whitlam worship there are those pointing out that Whitlam was rising a wave of radicalism driven by people’s movements all through the 1960s. Whitlam’s reforms weren’t entirely down to Whitlam himself (although his leadership and strength of character were an essential part of the mix). Feminism, civil rights, Aboriginal rights, student activism … It was the spirit of the times, as expressed in the musical Hair.

So now I can segue quite nicely back to hair. My hair.

Yesterday, I went to the first face to face meeting with colleagues since I was struck down by cancer diagnosis in February. In February I had long straight brown hair. By July every single strand of hair on my body had disappeared. Now, I have a greying stubble, a tufty regrowth. I look in the mirror and don’t quite recognise myself. I’ve been wearing hats and occasionally a brown wig (or a pink one) and sometimes scarves, although I find the scarves tend to shift around a lot and I spend all day fiddling with them. For a while now I’ve been working from home (marking); but yesterday I needed to Go In. In through the Door of Workplace. At 8.30am yesterday morning I was dithering around, wondering what I should look like. Should I be out and proud, an obvious cancer survivor? Should I wear a cheerful turban? Hat? Wig? In the end I decided on the brown wig. I had the idea that I should invoke continuity with my former, pre-illness self. This would show that I was ready to simply step back in, business-as-usual. I regretted this almost immediately, but it was too late to turn back. The wig was itchy. I kept fiddling with it. The meeting was a video conference. Up there on the screen you could see not only the people around the table in Wagga, but a mirror-like image of ourselves around our own table here in Bathurst. My hair looked deeply wig-like. I looked like someone who had come back to work in a wig after having chemotherapy. Worse, I felt I looked like someone who wasn’t owning up to a year of illness and struggle. After all my bold sharing of details like my colostomy bag on this blog, I was retreating to a position of trying to pretend that everything was normal. When I should be breaking down the stigma, the barriers, by turning up boldly in a hat or scarf or greying tufty stubble. I followed along and participated in the meeting, but I never forgot my hair.

Anyway, funnily enough, the meeting wasn’t all about me. It was about something else entirely. It’s quite possible that what I was wearing on my head wasn’t an issue for anyone else in Bathurst or Wagga.

I still haven’t decided what I look like. Continuity or a revolutionary break with the past? It’s only hair. But hair means so much.

I’m R rated, and it isn’t even Spring

I don’t know about the rest of the world, but an R rating in Australia means something is a bit racy and rude and therefore Restricted. I always think of the porn magazines hidden in a big clump of bamboo in the vacant block next to Lou’s house. We discovered the stash when we were eleven. We sneaked in from time to time to study the rain-damaged pages and hope we weren’t about to be ambushed by their secretive owner.

Budlets
Hints of spring on the tree hanging over my back fence.

For most of this year I’ve been working towards my own personal R rating: Remission. Once I’d been diagnosed and had a treatment plan, I was able to see that by spring, I’d be clear of surgery and chemotherapy, my hair would be regrowing like the buds on the local blossom trees and, if everything went well, I’d be in remission. That became my goal, remission in spring. As it turned out, I got there with 12 days to spare!

On Thursday morning, the doctor casually mentioned the R word in a little volley of sentences produced by a brief examination of my medical file (now a big fat pile of paper like you get in complicated legal cases) and a mouse-scroll through my CT scan. Wait, I thought, did he just say REMISSION? I stopped him and got him to say it again. This wasn’t my usual chemo doctor; this was a stand-in I hadn’t met before. He had absolutely no sense of occasion. Yes, he agreed, you’re in remission. It was a beautiful moment.

Afterwards, Steve and I found ourselves in the giant complicated maze that is the Parramatta Westfield shopping centre. We shared a plate of nachos from a Mexican-themed eatery. While things had been looking good for me since surgery, it was only upon hearing the R word that I was really able to let out the breath I’d been holding since February. I ate my lunch as a person who had had cancer. Past tense.

I know I’ll never be out of the woods. My fate now is to wander in these woods, wondering when (a lot of Ws in this sentence) or whether I’ll get another wallop. But for now, past tense rules.

I’ve had a lot of trouble writing this blog post. It’s now Saturday and I’ve been meaning to do it since Thursday afternoon. In the middle of treatment I blogged every Thursday without fail, no matter what, even when hooked up to my post-operative patient-controlled pain relief (aka Green Button), even when I had to write from a prone position with one finger picking out letters on the iPad. Suddenly, with this great release of pressure, it’s been hard to get motivated. Anyway, here we are now.

Meanwhile, bit by bit, I’ve been getting back out into the bustling world. Last Saturday a car load of us went to Kandos, about an hour and a half away, for a craft forum organised by the Cementa people. It went wonderfully well (more Ws). I showed my crocheted guts, and then threw them out into the audience. As someone caught one of my fuzzy tumours I suddenly realised the unfortunate symbolism – a bit like the bride’s bouquet – but it was too late to worry about that. (Alex Wisser of Cementa has done a great write-up of the evening here.) Afterwards, as we sat round the fire eating hot Kandos chips, Alex was holding forth about something or other, with expressive hand movements. His young daughter wriggled in behind him on the sofa and began doing his hand movements for him. It worked a bit like the YouTube clip of the dogs eating dinner. I found this so funny I almost lost the plot entirely. It was my first true belly laugh all year. It was my first big stomach-muscle workout since surgery.

On Wednesday, after I’d gone into the white doughnut for my CT scan, I got on the train to Circular Quay to check out the Anne Messager exhibition at the Museum of Contemporary Art. One of the artists at Kandos, Nicole Barakat, had told me about the room full of bodily organs hanging from the ceiling. And there they were – a multitude of body parts, larger than life, made out of fabric and soft filling. Everyone wanted to walk right through and amongst them (and feel them), but the minder was stopping us and telling us to walk around the edges and don’t touch. I felt a great companionship with these soft pieces. In another room, a darker vision: everything in black, objects spread out across the floor, some “breathing” eerily, light playing over them to throw spooky scenes on the walls, and a big projected clock displaying “real time”. The real time was about 3pm. It was an image of death, dying and end-times. I felt an affinity with this, too. This was the day before my doctor’s appointment to get my test results.

On Friday, we took Larissa’s dog Harry to have acupuncture. He sat quietly with small needles jutting out of his fur. There was a small brown curly dog there that was partly paralysed as the result of a fractured spine. It was being dried off in a big fluffy bath towel. It was all strangely relaxing.