Tag Archives: chemotherapy

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.

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.

First chemo

Last week I decided I’d update this blog on Thursdays, no matter what, unless I was physically unable to do it. It’s Thursday again, so this is my little self-imposed deadline. Today, I really don’t feel like it. I really don’t feel like anything. I feel too blergh for anything. But here goes: On Monday Steve and I entered the chemo room at Westmead hospital and were shown to the big blue recliner (me) and the ordinary office chair (for Steve). There was rigmarole. There was more paperwork. There were other poor sods in there getting their treatments, some looking perfectly healthy, as if they’d walked in off the street; others had that more challenged, settled-in look of the long-term ill. There were three tries to get my cannula in. I’m becoming cannula-phobic. Some nurses and doctors are good at this and some aren’t. My veins have always been hard to find – sunken, dehydrated from too much coffee. I’m turning that around, now, with big bottles of water on the go and no more coffee (tea is now my only remaining vice). Next time my goal is to have big fat veins to offer. For four and a half hours, I sat with the drip going in. There was a nice clear bag and then a big black one that you couldn’t see into. It was the big bad brother. It was the limo with the smoked glass. What the hell is in there? It’s easy to say “poison” but I’ll exert myself a little more this time, be more specific. Okay, I’ve just looked it up in my green folder. One bag contains Carboplatin and the other Paclitaxel. We’ll repeat this two more times, on the 10th of March and the 31st of March. The goal is to shrink the tumours so they are manageable for surgery. Then I’ll go in for surgery, rinse and repeat.

On Tuesday, we drove back to Bathurst. I was feeling perky due to the steroids they’d fed me the day before. We ate steak and chips at a pub in Blackheath and nipped down to look out over the cliffs and the long, thin waterfall where there was a rainbow in the spray.

All of these are just words. My main problem is the big C. As in, Constipation. This is where the real misery lies. I’ve had a lot of other interesting thoughts over the past week but they’re all just wisps out there on another plane. For now it’s really just about my guts, my poor guts, struggling to work around the tumours at either end of my gastrointestinal tract.

Still, even on a blergh day like this, there are still small joys. Bertie the black Labrador is my constant companion. He’s having treatments, too: he has a split pad on his right hind paw, so his leg is in a bandage and plastic bag contraption. His plastic bag slaps around the house. He settles in next to me and soon you can hear his gentle breathing, snoring, snuffling. Yesterday’s steady rain was gorgeous and today is bright and clean. I sat at the plastic table in the back yard under a thick canopy of summer leaves and ate Salada biscuits with a scraping of Vegemite.