Sorry, you need to enable JavaScript to visit this website.

One in a million

A memoir about living with cancer: history, theory and practice

Jo Lennan | September/October 2015

It’s a cool day late in spring when I first go in for treatment. Inside the large glass-fronted building, nurses pad up and down in sneakers. Volunteers circulate, offering iPads for distraction, and when they see me they look surprised to see somebody my age.

I’m not sure what to expect. “All the drugs I give out are poisons,” my oncologist has warned me. Her plan is to throw “the kitchen sink” at me. She’s hoping this will blitz any microscopic cancer cells.

By my recliner, a nurse puts on purple rubber gloves. He has Elvis hair, a brisk manner and a badge saying “Dipin”. He has readied a needle and a drip bag marked “cytotoxic”.

I unbutton my shirt, pulling it across. On the right side of my chest, under the skin, is a new implant. Called a portacath, made of titanium and rubber, it’s there to feed drugs into my jugular vein. It went in yesterday, so the incisions are still fresh. The surgeon made a neat job of it, placing it to one side, of her own accord, so I could still wear low-cut tops.

“Take a deep breath,” says Dipin.

I look out of the window as he pushes the needle in. It’s more painful than I expect – and the pain does not abate. It feels as if a cobra has locked its jaws onto my chest. I have the urge to tear out everything and run, like a character in a film fleeing a zombie apocalypse. But this isn’t the done thing, so I sit there as the drip bag flattens. When it’s empty, it is replaced. I’m there about five hours altogether.

The next six months will look like this. Every fortnight, the same procedure. Thankfully, the wound on my chest has healed by cycle two, so the needle no longer hurts. For a few days I feel gross (this isn’t nausea exactly, more a generalised malaise), but the feeling does diminish, and the week off in between is much better.

“It’s not the seventh circle of hell,” I start telling people. “I just have to go get poisoned every other week.”

Before this – before cancer I had never spent a night in hospital. I made it to 30 without so much as a broken bone. Then, in February 2013, I noticed something, a certain discomfort of the stomach. I thought I’d overdone the black coffee in the morning, or the dried mango a houseguest had brought from Darwin. I began to dislike having the weight of my boyfriend’s leg across my body.

These didn’t seem like symptoms. They were easy to dismiss, even when things got worse. I saw a GP, then a specialist, in Sydney, where I live. I was given the all-clear, and for a time I did get better. Then, in mid-2014, came several bouts of what felt like food poisoning. In August, instead of eating the Ottolenghi-style cod cakes a friend had carefully prepared, I threw up in her bathroom. I was about to take a work trip to London via Hong Kong, but my GP said not to go anywhere. The specialist rang my mobile to say the same thing, and her voice had a different note, something like alarm. Even so, I didn’t believe it would turn out to be anything serious. I was perpetually ready to assume that things were fine.

From there things happened quickly. A surgeon said I had an obstruction in my small intestine that had to be cut out. I cancelled my trip. I bought pyjamas for hospital, because who under the age of 60 actually owns any, apart from old track pants and skimpy camisoles? I put my passwords in a file, which I jokingly labelled, “For if Jo croaks”. Instead of drinks with an editor at the Foreign Correspondents’ Club in Hong Kong, it was into hospital and under anaesthetic.

The two weeks after that are hazy now; a cocktail of painkillers does tend to dull the memory. I remember the news, which showed Scotland voting No. I remember the visits from family and friends, the flowers and gifts. At first I kept quiet about being in hospital, but my parents came to Sydney, a six-hour drive from where they live, and looked bewildered when they saw me. My younger sister, a physiotherapist, flew in from Perth and took me for turns about the ward. I was still feeble and full of tubes, and for a few days I kept my phone off, while my boyfriend acted as gatekeeper and giver of updates.

On the Saturday morning, instead of enjoying the warm weekend, the surgeon stopped by. He said the biopsy results were in, and they showed I had cancer. His tone was frank and apologetic, his manner self-deprecating. “It’s not what you want,” he said. He told me the “experts” would know more – he was “just the dumb surgeon” – but I would probably need chemo. This wouldn’t be, he assured me, the hair-shedding affair of, say, leukaemia treatment. Instead, I would get a portacath installed below my shoulder and go in each fortnight for a top-up dose, like a car at a petrol pump.

I nodded and took this in. He made it sound do-able, even routine. I was weirdly fine, more daunted than upset, surprised rather than shocked. Then came Monday, when it was time to give up opiates. I relinquished the friendly green button that released the fentanyl (a PCA, they call it, for patient-controlled analgesia); that night I sat awake crunching ice-cubes, as my throat was sore after they took the tubes out. The ice numbed my throat, allowing me to sleep.

I wouldn’t know the extent of things until a scan some weeks later. The PET scan (positron emission topography) would show if the cancer had spread. It works by registering cells that are chewing through lots of glucose, as cancer cells are wont to do. They have a sweet tooth. On the day, I was given a cannula attached to a syringe of almost novelty proportions, like an outsized prop for use in a school play. This was filled with saline and fluorodeoxyglucose, a radioactive tracer isotope. After an hour – the half-life of FDG – I lay in the whirring scanner and contemplated praying, before deciding that on balance it would be hypocritical.

“This was a lightning strike in a field”, my surgeon told me. He wasn’t the only doctor who would use this metaphor

That afternoon, I checked my e-mails and clicked on the report. There were dozens of images of my body in soft greys, with black masses for the brain and some post-surgical healing. The report started out with the encouraging observation, “There are no large mass lesions in the brain”, and went on to give the tick to my liver and other organs.

This was good news, as my oncologist confirmed. A mixture of cheeriness and steely intelligence, she told me the cancer had not yet metastasised (spread). As it was locally advanced, this was a close-run thing. Later, a doctor friend said he’d expected me to light up “like a Christmas tree” in this scan.

Even so, the oncologist resisted offering a prognosis. My cancer was unusual, especially given my age. It turns out that oncologists think like statisticians. In the absence of data, they’re inclined to shrug their shoulders. In my case, data are scarce, but borrowing stats from other cancers and making some assumptions, after chemotherapy I would have more or less even odds of surviving the next five years.

Fifty-fifty, I thought. OK. This was sobering, but it was also a turning-point. For weeks I had been floating, as if reality were suspended. Now, I felt like I was back in the game. I felt like the world might once again have something to do with me.

As a writer, you stalk some subjects. You ask people for interviews, you bide your time and follow up, or you wait until a story is topical. I didn’t expect to write about cancer. I hadn’t thought about it much. But for some time – probably years – it was stalking me. At the sub-cellular level, to go by the prevailing thinking on how cancers develop, the genetic errors were piling up.

I don’t dive into the science straight after my diagnosis. My boyfriend starts reading reams of scientific papers, but I see a danger in being consumed by unending research, especially when my strength is low and I am facing gruelling treatment. My surgeon tries to steer me away from a fixation. “It’s human nature to look for causes and explanations, that’s how we think,” he says. “But this was a lightning strike in a field.” He wasn’t the only doctor who would use this metaphor.

But why and how does cancer form, apparently for no reason? Medicine’s answers to these questions have changed dramatically through the ages, as have its methods for treating sufferers. One thing I do read is “The Emperor of All Maladies”, a remarkable book from 2010 by an American oncologist, Siddhartha Mukherjee, who recounts how, in the second century AD, Galen of Pergamon argued that cancer, like melancholia, was caused by an excess of black bile. His approach favoured bleeding and purging of humours, while surgery was used only in extreme cases.

In the 16th century, the barber-surgeon Ambroise Paré described charring tumours with a soldering iron and chemically searing them with a paste of sulphuric acid. (This might sound misguided, but everything old is new again: the other day, a radiologist told me how he is honing the use of microwave probes to “cook” tumours.) Only in the 19th century, after the twin inventions of antisepsis and anaesthetic, did surgery cease to be butchery and become a more standard treatment. Even so, physicians were little closer to understanding cancer’s causes.

What we’ve learned in the years since is, in a way, perturbing. If only there were one cause, there might be a silver-bullet cure. But cancer is actually more than 100 distinct diseases, and their differences run deep, implicating different genes and mutations. The mention of genes can make it sound as if all cancer is in some way hereditary, in line with the colloquial expression that something is “in your genes”. But scientists now know that the genes in our cells can also mutate during our lives – whether because they are exposed to some mutagen like tobacco or DDT, or because a virus meddles with a DNA sequence, or just because of a certain rate of natural, intrinsic error involved in the regular copying of cells.

That last category recently sparked a furore. In the wake of research published in the journal Science in January, newspapers proclaimed that two-thirds of cancers are simply “bad luck”. It transpired that journalists had taken that figure out of context, but the study’s authors, researchers at Johns Hopkins University in Baltimore, defended the proposition that a build-up of random mutations in healthy cells can initiate cancer. Health experts protested, concerned that the public would discount lifestyle risks like smoking; the World Health Organisation’s cancer-research arm issued a press release saying it strongly disagreed with the report, and that “nearly half of all cancer cases worldwide can be prevented”.

The ruckus underscored a problem with talking about cancer. How does a writer – or doctor – explain complex phenomena that are not always susceptible to easy reduction? Metaphors can help, though they can also misrepresent. Or even do harm, as Susan Sontag argued. Diagnosed with breast cancer in the 1970s, Sontag saw the then-popular remedy of talk therapy (which was premised on the idea that the ultimate cause of cancer was repression) as a form of victim blaming. In her book “Illness As Metaphor”, she argued that metaphors and myths surrounding cancer can add to the suffering of patients and inhibit them from seeking proper treatment.

Some scientists are now using the language of evolution to explain cancer’s workings. They say a Darwinian struggle is going on among our cells, not unlike the evolution that is involved in the origins of species. The process of selection may weed out cells with mutations – or it may foster them, as when mutations confer a superior ability to proliferate and survive. Occasionally, the result is the disturbed, pathological and invasive growth of cells: cancer.

I find myself honing my explanations, putting things in new ways. I was recently talking to my mother, who since my diagnosis has struggled with the “why” question. She has worried about a possible hereditary factor, though a genetic specialist says that looks unlikely. I tell Mum, a retired high-school maths teacher, that while from an individual standpoint a rare cancer looks improbable, especially in a younger person, taking a whole-of-society view you would expect to see such a case in, say, one out of every million. This is the rough estimation one specialist gave me.

“There’s a bell curve,” I say, “and I’m at one end of it.”

Mothers don’t expect their daughters to get cancer, but mathematicians know bell curves.

“Yes,” she says. “I see what you’re saying.”

My treatment continues through the southern-hemisphere summer. I take pills for the nausea, then give them up as useless. I pass the worst hours watching television; I can’t bring myself to read books. In my weeks off, the time built in to allow the cells to recover, I work when I can, and sometimes swim at Bondi or one of the other beaches. It’s like getting out of prison every other week.

Once a fortnight I check in with the oncologist. A self-declared perfectionist, she monitors my blood tests and makes sure I’m holding up. She has her eye on the risk of permanent nerve damage and asks if I feel tingling in my fingertips. I do, but it always passes. She assures me we’ll stop before any function is compromised, and tells me about another patient of hers, a concert violinist who completed treatment without any loss of dexterity or feeling.

I have a brief reprieve at Christmas when the cancer centre shuts. There is no question of going anywhere, though. Aeroplanes are incubators for bugs, and chemotherapy demolishes the white blood cells that power immunity. I am grounded, literally. As the usual cohort of expats descend on Sydney for the holidays, I envy them their easy comings and goings.

My relation to time changes. I find it hard to envision the future, or even much beyond a day. Yet, far from living in the moment, during my poisoned periods I only want the time to hurry up and be done with. Hence the TV binges, which aim at mindless escapism. I abandon slow-moving dramas and go for fast, witty sitcoms like “Parks and Recreation”. I have a new-found appreciation for comedy, especially black humour. I am amused when a Russian friend writes to say, “You are certainly fortunate that you don’t have to watch Russian TV – that is the most toxic poison ever invented.”

The antidote to chemo: Jo Lennan found two things helped – watching “fast, witty sitcoms” and eating fruit, brought in quantity by her boyfriend

Along with back-to-back episodes of sitcoms, the best antidote is fresh fruit. My boyfriend is forever bringing me string bags full of passion-fruit, big segments of watermelon, whole yellow-green papayas. The freshness cuts through the peculiar chemical smell of cytotoxic drugs, which, to my disgust, I can smell on myself. It’s as though they are seeping from my pores. In fact, they probably are. For about seven days after treatment, a chemotherapy patient is cytotoxic, meaning that body fluids are laced with the poison.

When watermelons go out of season, mandarins become my favourite, and I go through bags of them. A nurse tells me some people find the smell of orange peel helps with chemo sickness, and this is far from the worst suggestion I will get. From then on, when eating mandarins, I crush the peel in my hand and smell it. This, along with the sweetness, dispels the chemical smell and lessens my revulsion.

I think I’m tracking well. My oncologist is happy with how things are going. Then, as summer turns to autumn, my blood tests show a plunge in my white-blood-cell count and, even more so, platelets (which are an indicator of how bone marrow is faring). While we can’t measure the drugs’ effect on any cancer cells, we are seeing them wreak havoc on other fast-dividing cells. Cytotoxic drugs inflict damage on DNA, and fast-dividing cells have a lot of DNA activity.

A few times, I am turned away from treatment. I am told to wait one week, then another, for my numbers to bounce back. My oncologist doesn’t want more delays. She docks my dosages by a fifth, saying, “There’s no evidence this will reduce effectiveness.”

I know what she isn’t saying. There is equally no evidence that it will be as effective.

We’re going off-piste, quitting the formula used in trials. But it’s the logical thing to do, probably the only safe thing.

I cut down on commitments. “Grounded again,” I say.

Sometimes, when I see people, they look at me hopefully and ask, “Is the treatment working?”

I’d like to know that too.

 

On occasion, I’ve been asked, “Do you think one day we’ll look back and see chemotherapy as barbaric?” From what I’ve read, it seems quite possible

To understand chemotherapy, it helps to know its origins, which lie in a wartime disaster. One night in December 1943, German bombers attacked the port of Bari in Italy, sinking 17 Allied ships. An oil slick coated the harbour and vapour blew across the city, with a faint but detectable garlic odour. The smell was mustard gas, from a secret cargo of 2,000 nitrogen mustard bombs stored aboard the USS John Harvey. The Allied top brass tried to keep the bombs a secret – Britain didn’t officially acknowledge the mustard gas until 1986 – but a US Army expert on chemical warfare, Dr Stewart Alexander, deduced what had happened.

When he autopsied the casualties, Alexander found something else. The gas had annihilated the victims’ white blood cells and shrunk their lymph nodes. He surmised, correctly, that since the chemical all but ceased the division of these normally fast-dividing cells, it might be used to suppress cancer cells, which also reproduce rapidly. After Bari, pharmacologists at Yale injected a lymphoma patient with a derivative liquid, mustine, and saw the tumour shrink. But the drawbacks of chemotherapy soon became apparent too. Crippling side-effects limited dosages, and the treated lymphoma quickly developed resistance to the drug. Ever since, researchers have had to grapple with the same two problems.

I look up the drugs I have been taking, intrigued to find out how and when they were discovered. I have to do some digging: most information online is geared to informing patients about drug applications and side-effects, not history. (Not many doctors or nurses seem to be interested in this stuff, which is what makes Mukherjee’s book all the more remarkable. Or perhaps they’re just disinclined to shoot the breeze with patients.) One of my drugs is oxaliplatin, a platinum compound that interferes with DNA replication. Hereby hangs a tale: in 1965, a biophysics researcher named Barnett Rosenberg at Michigan State University noticed that a cell in mitosis resembles the behaviour of iron filings in the presence of a magnet, that is, in a dipole field. This was not significant in itself, but it prompted Rosenberg to subject bacteria cells to an electric current. He used platinum electrodes, wrongly supposing the platinum would not react or interfere in the experiment. What he observed was startling: the cells stopped dividing. It took him two years to realise this was the effect of the platinum, not the current. A decade on, platinum compounds were being administered to cancer patients. Nonetheless they are regarded as probable carcinogens.

Another drug in my drip bag, 5-fluorouracil, is a decoy-like agent that works by mimicking an essential component of RNA synthesis and thereby disrupting the multiplication of cells. In use since the 1960s, it is likewise a common drug. What’s newer is the use of these two drugs in combination: so-called combination chemotherapy has been shown to radically increase efficacy, thwarting resistance.

On occasion, I’ve been asked, “Do you think one day we’ll look back and see chemotherapy as barbaric?” From what I’ve read, it seems quite possible. The latest thing is a class of drugs called targeted therapies, a departure from conventional, blast-away chemotherapy. The buzzword is specificity, here used to mean that a molecule cleaves to its unique target, sparing healthy cells. Whereas in the post-war decades, drug development ran ahead of a real understanding of cancer cells, targeted therapies depend on a fine-grained appreciation of the sub-cellular attributes of specific cancers.

The pin-up drug is Gleevec, which from 2001 was so successful at treating one kind of leukaemia that doctors now speak of the pre-Gleevec and post-Gleevec eras. Other successes include Herceptin, which attaches to the HER2 protein that is involved in some breast cancers, and Ipilimumab, which, in advanced cases of melanoma, almost doubles the chance a patient will be alive two years on.

Resistance is still an issue, though. Professor Mel Greaves, director of the Centre for Evolution and Cancer at the Institute of Cancer Research, recently told the media in London, “You must have noticed that when you read reports about new target therapies, isn’t it odd that they work dramatically, but three months later [cancer] is back with a bang? It’s almost always the story.”

His prescription was a controversial one. Scientists should give up trying to “cure cancer” and instead look for ways to prevent it, slow it down or manage it.

Many will say that’s premature, especially given the range of drugs that are currently in development. These are the result of what is being feted as the “genomic era” of cancer research, or more than a decade of strenuous international efforts to sequence cancer genomes. The project has had many successes, and no doubt more will emerge as the data are analysed. The phrase “big data” doesn’t even begin to describe the amount of information that has been generated. So far constituting about 20 petabytes, it’s so large and unwieldy that it takes an institution with significant computing grunt four months just to download it.

It could yet turn out that not all such mutations matter, in the sense of causing a person’s cancer. Here researchers speak of drivers and passengers – mutations that are along for the ride. Still, the more genome sequences the scientists complete, the more daunting the cancer map, with seemingly infinite mutations, and more and more genes in play. If targeted therapy is the goal, the number of targets we’re dealing with just shot up beyond any imagining. Recent reports put the tally of cancer-related mutations at nearly 10m. Never was research success so dispiriting.

So where to now? War on cancer was first declared in 1971, when Richard Nixon was president, in the flush of techno-optimism that followed the first Moon landing. And war remains the dominant metaphor we use in thinking about cancer. But if you listen to the scientists, you will hear the sort of talk that is now all too familiar from discussions of real wars – of how we must redefine what victory would look like, of needing to pick discrete battles. Otherwise, what does it mean to be waging war on so diffuse a set of enemies?

May, the end of autumn here, brings an end to my treatment. The last cycle is delayed, which isn’t unexpected. My oncologist expects me to be deterred – it distresses patients, she says, to be delayed right at the end – but I can only be so upset about not getting poisoned on any given day. On returning the next week, I go through the familiar drill. Then it’s finished. The nurses smile. One of them says she hopes she’ll never see me again.

When I leave the building, feelings come in a rush. It’s as if, now I’m done, I can afford to be distraught. I’m still poisoned at this point, and the last cycle is hard. A week later, I’m still in a slump. A blood test puts my platelets at half of their previous low. Chemotherapy has cumulative effects, and the end of my treatment came as I neared my limit.

Against the tide: the author at Bronte – one of the Sydney beaches where, before cancer struck, she liked to go for an early-morning swim

In June, I start feeling better. Not by normal-person standards, but I stop smelling like chemicals. I stop willing time to pass. It’s winter, my favourite season in Sydney – the ocean is swimmable if you’re foolhardy enough, the sand cold and crunchy underfoot of an early morning. By July, I feel radically different. I mean actually better – almost normal-person better.

The next PET scan is a good one. It shows I’m clear of cancer. There will be other scans down the track. I’m told at the five-year mark they shake your hand and say you’re cured. In the meantime, my oncologist tells me to live life. “Don’t leave anything on the paddock,” she says.

Otherwise, what lessons from a year-long bout with cancer? All I needed to do – all I need to do – is endure. That’s victory enough.

Some people expect me to be more upset about getting cancer, as if I should be turning my eyes toward the heavens and asking, “Why me?” But I didn’t – don’t – feel that way. I didn’t have time to be upset, or perhaps more precisely the energy to waste on being upset, after the diagnosis.

I had just had what turned out to be a major operation – the surgeon had to cut out way more than he expected, and it left me debilitated. When I got out of hospital, I weighed 49 kilos. I then had a four-week window before chemo in which to try to recover basic functioning, go oncologist shopping (my first was a dud).

But getting cancer did not upset my equilibrium or world view. The battle has been physical, not emotional. I saw from day one of chemo that all I had to do was endure. I’m in the Sontag camp: it’s not a metaphysical battle between the forces of light and darkness. I don’t feel betrayed by my body or by fate. On any sane view, I am fortunate. I haven’t been plagued by thoughts of death because, although I want to live, I don’t have a fear of dying. 

What was hard, apart from feeling gross and smelling like chemo, was dealing with the responses of others, including, weirdly, people I was not all that close to who wanted to opt in on the drama. Also, the indignities of bodily collapse. The limitations of being, for a time, an invalid, then a part-time invalid. Ceasing to earn a living. I am a proud person: I didn’t take to these things well. But they were endurable.

Readers' comment

Sign in or Create your account to join the discussion.

Amanda Kelly - July 7th 2017

Thank you so much for such an inspiring article. I agree with the fact that living with cancer is not easy, though optimistic approach towards life, support for the loved ones and the proper treatment with patience might help a lot for the patient. My best friend is recently diagnosed with the cancer. Her treatment is currently going on at Effects of radiation for cancer treatment Long Island (http://www.advancedradiationcenters.com/cancers/). She is taking multiple sessions every months. I hope she will be fine soon.