by Shaun Carney
The following morning, I called my father. He was appropriately upset as I delivered the news and in this conversation he did me an enormous favour. He had been raised as a Catholic, served as an altar boy at the grand bluestone church near his home and educated by the Christian Brothers. His experience with the Brothers was predictable in two ways: it was brutal and it gave him a solid education in the basics. He’d drifted away from Catholicism in adulthood. He explained to me once that he had been offended as a fourteen-year-old to be told by a Brother that under no circumstances should he read Voltaire and this had caused his faith to lapse. To the best of my knowledge he didn’t get around to reading Voltaire; I never saw a copy of Candide on the shelf next to Jon Cleary’s The Sundowners or the Harold Robbins and Bryce Courtenay books he enjoyed. I suspect he simply didn’t like being told what he could look at, which was fair enough. He was never churchy. He rejected the notion of original sin. But here he was on the phone, grasping around, having been told that his granddaughter had a potentially fatal illness. He was looking for some way to help me, so he asked: ‘Do you think you should seek some spiritual guidance while this is going on?’ I had to take a second to comprehend this. He hadn’t entered a church, apart from attending a wedding or funeral, in forty years.
‘Do you mean like go to a church or something, talk to a priest or some other sky pilot?’
‘Yes. It might help.’
‘No. What would be the point of that?’
‘Well, a lot of people have taken comfort from it for a long time.’
This was the moment at which so much became clear. Hours earlier I’d made the choice not to look for meaning in this. Why go back on that by turning to God for comfort or reassurance? Fuck God, who gave a beautiful little girl cancer and consigned a baby boy to a life of blindness. If that’s God’s business I don’t want anything to do with him. Or her.
‘No, Dad, I’m not going to waste a moment on that.’
‘Are you sure?’
‘Yes.’
And with that, God was gone, booted to the kerb, where he remains. My faith was now defined. It was that I had no faith and saw no reason for having one.
After deciding that God either didn’t exist or wasn’t welcome, I drove to The Age building to deliver my news to the bosses. I didn’t know how long I’d be away from work but it was likely to be at least one month, possibly two. At the time, under the formal structure of the paper, I reported to Gay Alcorn. She was the editorial executive who was required to conduct my annual performance review and the one with whom I lodged my leave requests. I recounted the previous twenty-four hours to her and she expressed her sympathy, telling me that I should just do whatever needed to be done and not to worry about work. It was the only time we ever discussed Jane’s illness. I then walked next door to the editor Andrew Jaspan’s office. He was busy. I told his PA Anna Marulli why I needed to speak to Andrew. Anna is a warm-hearted person but blunt with it. As soon as I stopped explaining myself, she rose from behind her desk and barged into Andrew’s office. ‘You’re going to have to hear this, Andrew,’ she said. ‘It can’t wait.’ Andrew had numerous detractors inside and outside The Age—The Australian and Crikey were especially devoted to destroying him, as were more than a few members of his own editorial staff, who regularly leaked against him, even taping him during a staff meeting and distributing the results to other media—but his response on this occasion and for all the years we’ve known each other is genuine. This is terrible, he said. Do what you have to do. Don’t think about this place. I thanked him, headed out and wouldn’t be back there for six weeks.
His was an easy directive to follow. After the diagnosis, Jane was bombarded with chemo drugs until the cancer was either wiped out or diminished to the point where it was judged as negligible. This was standard procedure and the expectation was that this would take two weeks. From that point, the daily bombardment could be scaled back and the treatment would be likely to be some all-day sessions plus a couple of injections each week and a monthly lumbar puncture for about eighteen months. After a week, the treatment was on track; the leukaemia had receded to somewhere around 50 per cent. But by the end of the second week, the news was not good. Jane had missed her targets and there was little change from the previous week; she was not tracking the way that most patients did. The oncologist, a quiet young doctor called Chris, explained that this meant that Jane’s leukaemia was more tenacious than he’d hoped. The way to treat it was to apply bigger doses of chemo and to do it for a considerably longer period than usual. Chris was obviously disturbed by this turn of events although his certainty about how to overcome this setback was clear. ‘What we’re doing is to get to a situation at the end of the treatment period where Jane will be no more or less likely to get leukaemia as anybody else. It’s just going to take a bit longer to get there in her case,’ he said.
A ‘bit longer’ ended up being twenty-eight months. This meant that the treatment extended across four calendar years, beginning when Jane was in Prep and concluding a fortnight before she was due to begin Year Three. She spent most of that time without hair, mostly alabaster-pale but sometimes yellow and jaundiced, with her weight fluctuating from scary thin to moonfaced bloat as the chemo drugs and the steroids fought it out inside her system. But when she wasn’t at the hospital hooked up to a drip, receiving injections in her thighs, or undergoing lumbar punctures while under a full anaesthetic as part of her treatment, or spending a week or two at a time in the cancer ward trying to overcome an infection—which happened every few months—she was attending school. She couldn’t take part in sport, and sometimes during the day she would get too tired to stay at her table. When that happened she would retire to a corner of the classroom to a beanbag that we’d bought at a beanbag store near our home—Melbourne’s inner north can be good for that sort of irregular purchase. Lunchtime was often a trial for her because she couldn’t participate in games and as she walked around the schoolgrounds, she would be taunted because of her appearance. We learned of this only later when the parents of the one friend who stuck with her all the way through these years, a boy called Anand, mentioned it to us. He had told them that he saw it as his job to always defend her and to tell the other kids, some of them bigger and older, to get lost. Jane has never mentioned it to us.
When your child has cancer you are conscripted into a community that is one part citizens’ army and one part secret society. Headquarters is the hospital’s cancer centre, with its handful of private treatment and examination rooms, a bigger communal treatment room in which the chemo is administered, and the sections where children too sick to go home stay. Separate to that section are closed-off wards where children who’ve been given stem cell or bone marrow transplants are looked after, sequestered in a controlled environment to avoid infection. We never had to go to that section. Through secure glass doors, I would see parents entering a sterile airlock as they visited that area, donning antiseptic scrubs in order to see their children, and wonder how they dealt with all that extra anxiety. A bone marrow transplant is a serious escalation, full of risk, heightening the prospect of heartbreak.
Inside our cancer parent community, high, authentic emotion is rarely displayed. Doctors are friendly but all business. Nurses ditto. There is, in most instances, an atmosphere of forced good cheer. The feeling in the rooms is flat. There is air in the interactions with the staff but that air is not rich in oxygen. Understandably. The people who work there have seen too much.
For all of our determination never to ask ‘Why us?’, I still spent a good part of those first few months paddling around in self-pity until three experiences accumulated to make me realise I was being a fool. The first involved a conversation with a fellow cancer parent as we waited for a consultation. Rick’s little boy looked about two, running around with a nappy padding out his trousers. They lived in rural Victoria where Rick had been a public servant. The chemotherapy regime had lasted quite a while. Rick had used up all of hi
s available leave as it proceeded and he’d been absent from work for considerable periods. He lived a three-hour drive from the hospital and from time to time he had no option but to stay at the motel across the road from the hospital in order to take his boy to an early appointment or a scheduled surgery. Meanwhile, his wife looked after the rest of their family. Eventually, Rick had been gently nudged out of his job. He professed disappointment rather than bitterness at this. In any event, when I met him he was in good spirits, exuding a sense of release. His boy’s treatment was coming to an end. Their life could return to normal. Rick was especially helpful in explaining how much easier it had been for his little boy to take his medications via a port rather than through the standard method of cannulation via a syringe on the back of a hand or the inside of a wrist. ‘He loves his port,’ he said with a smile as his son fussed around with a blue plastic truck on the floor. ‘I’d really recommend it.’ As we parted, I thanked him. We wished each other well.
A few weeks after that, again in a waiting room, I eavesdropped on a group of mothers, several of whom had brought their children up from Tasmania for treatment. Some of them were staying at Ronald McDonald House, a set of terraces facing on to the hospital and owned by the charity created by the fast-food company, where out-of-town parents could stay while their kids were in the hospital. The mothers were comparing notes on their children’s conditions and forms of cancer. Their kids all seemed to be suffering from various exotic-sounding types of leukaemia. They were discussing treatments, side effects and prognoses in a straightforward, no-nonsense way. They were voluble and disarming. The mother sitting closest to me said of her daughter: ‘I wish she’d got ALL. That’s the leukaemia you want, from the sounds of it’. It didn’t feel that way to me but I instantly got what she meant. Acute lymphoblastic leukaemia is the most common form of cancer in children, accounting for 30 per cent of all juvenile cancers. The standard treatment is straight chemo and steroids. Because it’s the most widespread cancer in kids, it has naturally attracted more research and the most work into the fine-tuning of treatments. As a result, children under fourteen who develop the disease have a survival rate five years after treatment of 90 per cent. Compared with the other cancers, it is more desirable. How bad does your outlook have to get for you to volunteer in a conversation that you envy other parents whose kids only get a certain form of leukaemia?
The third experience, the one that stung like a slap across the face, took place in the neurological ward one weekend. Jane had developed a roaring temperature over the space of a few hours one Friday afternoon. This meant that she had an infection and would require antibiotics and a hospital stay, possibly for a week. The infections are expected and can come on very quickly, so you can be going about a normal day and within four hours find all your plans suspended as you head into the emergency department, fearing a collapse or a fit. When Jane was admitted through emergency, there were no spare beds in the cancer centre so she was given a bed in another part of the hospital, this time among the neurological patients. On the Saturday afternoon, I bumped into a woman near the lifts who I’d first met more than twenty years earlier when she was a cadet reporter straight out of school. She was always a gentle soul. She was there because her twelve-year-old daughter was a patient in the ward. The girl had some weeks earlier awoken one morning to find she couldn’t move her legs. Doctors found that a small tumour had wrapped itself around her daughter’s spinal column and basically strangled it. It was a condition that afflicted about one in a million people. Nothing could be done. This was a new type of awful. I felt ashamed, crushed, embarrassed. We still had hope—a lot of hope, actually. Our prospects of avoiding something irrevocable were reasonable. We had a chance to get our daughter back intact, unlike so many parents with children in that hospital. I resolved to fix that perspective in my head and never let it go. Predictably, I often let it slip, but I held on to it enough to get through.
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Each year, the Herald & Weekly Times and the Seven Network run the Good Friday Appeal, a charity with its beginnings in the days when Sir Keith Murdoch ran the company. In the lead-up to Easter, the Herald Sun runs a story a day featuring a picture and a few paragraphs about a child coping with a serious illness at The Royal Children’s. The intent behind each story is pretty obvious: the reader is expected to feel affronted, upset, saddened, and to be encouraged to think that by donating money the leaden sense of helplessness they’re experiencing can be diminished. If you want to know what it’s like to be a parent whose child is a long-term patient, especially in the cancer wards, gather up every one of those stories you’ve ever seen and imagine walking and sitting among those children day after day, seeing them in the corridors and in the lifts. Imagine watching them go off to a private treatment room and then hearing their cries as they’re given painful intramuscular injections. Watch them vomit over and over again. Worry every time you take your child outside the house—to go shopping or on public transport or to a cinema—because a virus or a bit of bacteria can land them back in hospital. Imagine seeing children in their teens who’ve relapsed and are well into a maintenance protocol displaying a sort of forced bonhomie as they greet the nurses in the communal treatment room, just so that they can keep going, knowing what they know is likely to happen to them. Imagine seeing kids of varying ages, hairless and sallow, unspeaking, still, being pushed around in a wheelchair by an expressionless, resigned-looking parent.
Imagine seeing, as I did, Rick and his little boy back in the treatment room two years after he bade you farewell and good luck, because the cancer had returned.
15
EVERYTHING SOUNDED GREY
NOTHING WAS THE same for me once I entered the child cancer world. Food tasted dull. The weather seemed immaterial. Music meant nothing. I continued to review new releases for the Green Guide during the first six months of Jane’s chemo but increasingly it seemed a pointless exercise. Everything sounded grey. In early 2007, I reviewed albums by the Kaiser Chiefs, The Stooges and Art of Fighting, all favourably. I have no recollection of hearing them, much less listening to or writing about them. Something was very wrong. My final review was of Because of the Times, the third album by the American Southern rock quartet Kings of Leon. I gave it four stars out of five, which means I must have been impressed, and concluded the review with this sentence: ‘If you’re feeling jaded with rock music, hook into this and feel revived’. Who was I addressing—the reader or myself? I can’t remember that record and I’ve never gone back and listened to it, nor do I have any interest in doing so. I was beyond revival and I knew it. This was bordering on the pathetic. As soon as I filed that review, I advised the section editor that I wouldn’t be doing any more reviews and sent emails to the promotions people at the various record companies that they need not send me any more new releases. I probably should have done it before Jane’s illness. I’d felt ridiculous as a reviewer for quite a while anyway. I was a few months short of fifty, popular music had atomised, tastes were changing at an increasing rate, albums as an art form had long been in decline, and the sort of rock-based music that I best understood and had decades earlier formed the basis of my tastes was becoming the new jazz—a shrinking subsection of pop that was destined to live on by recycling and reinterpreting itself.
The music industry had been dislocated earlier and in a more profound way than journalism by the advent of the Internet and new digital technologies. File-sharing sites had shown how vulnerable not just the companies but the artists who relied on them were. It’s quaint to look back at the seventies and the campaign against home taping by the record companies. Once CD burning became a common feature of home computers and laptops, nothing—especially the absurdly clunky and ill-advised copy protection software that a few hardy record companies plonked on their products in the 1990s—was going to stop the value of music as an economic commodity from being diminished. And file-sharing, piracy, whatever you wanted to call it, turbocharged that proces
s. It also went close to fatally undermining music reviewing. The Internet allowed anyone to be a publisher and let’s be honest, what qualifications did I or anybody else have to write about music, apart from being a fan and a hack bedroom guitarist? I’d tried to bring journalistic principles to my music writing, working hard to go beyond my taste and to be fair to artists. I’m not sure I succeeded. Inevitably, when you receive, say, six CDs in a week and you can review only one, you’re more likely to discriminate in favour of something you know. It was an arbitrary process. For a long time, the Green Guide’s music review pages were powerful because its readership was large and cashed up, and the section stayed in lounge rooms for an entire week because it contained the TV program schedules. Some record company people regarded the Green Guide as a sort of bible, which each Thursday would issue forth authoritative tablets about the merits of new music. For most of the 1990s, they would personally make pilgrimages to my desk to present their new releases and expectantly pitch them to me. When I first started writing for the Green Guide in 1990, the pop music CD reviews took up an entire tabloid page that was studded with advertising for hi-fiequipment, TVs, computers and new CDs. There was room for about 800 words of editorial, which allowed for reviews of three or four albums. By the time I finished seventeen years later, there was room for one review of a little over 200 words. A star rating system had been added along the way because the words weren’t deemed to be strong enough to leave readers with an accurate impression: people, the reviewers were told by a higher-up, like numbers and stars. As money became tighter due to ad fall-offs and budgetary pressures imposed by the succession of owners and managers who ran the company, the reviews—after decades of running in the general pages of the Green Guide—were in the early part of the twenty-first century shunted into a section in the middle called Livewire. This section covered entertainment technology, cameras, computers and computer games. The CD reviews were included in Livewire, its editor told a reviewer colleague, because that’s where all the software coverage went. I had never until then thought of music as software. I still can’t accommodate the idea of ‘Rhapsody in Blue’ or To Pimp a Butterfly or Pet Sounds being software but it was helpful for me to know that at least one editor at the paper I worked for did.