5
Just had something cut out
We would lie on the beach, our backs turned up, our cheeks pressed down into the sand to achieve the mahogany stain that marked the true White Australian. We would go crimson quickly, then so quickly brown that the scorched skin came off in long white strips. We would peel it from each other with delight, enjoying the gentle tickle and congratulating ourselves on getting out of last year’s skin.
Donald Horne, The Education of Young Donald, 19671
I’m standing in my underwear on the twentieth floor of a suburban office tower, arms outstretched. Midday sun streams through the north-facing window. Fluorescent light falls from panels in the ceiling. Sharper light beams towards me. My skin, looking paler than ever under all this brightness, is getting a thorough going-over. Every square inch of epidermis. The soles of my feet. The webbing between my toes. My palms. The contours of my ears. My scalp, armpits, limbs, torso, back, eyelids and nose. My décolletage and backside.
It’s full-body skin-check time, a ritual for many Australians. Andrew Ming, my highly qualified dermatologist (who also has a background in paediatrics), is as affable as ever. I’ve been seeing him for years and he greets me with, ‘How are you?’ The surroundings are familiar and my visit routine, but the truth is I feel a tight-chested, dry-mouthed sense of dread, every time. We chat as I undress, but Dr Ming goes quiet as he puts on his special glasses to begin the examination. This is an annual appointment, but I know his parting words will be, ‘Come back if you’re worried about anything at all.’ Often I do. Because I am.
During the check-up, Andrew Ming may reach for his dermatoscope, a magnifying lens that dermatologists use to take a close look at pigmented lesions upon the skin. A digital camera and a ruler lie within his reach, ready to photograph or measure one of the many marks on my skin to see if it has grown or changed. If it has, it will be biopsied or flagged for future monitoring. Dr Ming may freeze something off with liquid nitrogen. He will almost certainly annotate my chart, laid out on his desk for easy reference, which shows a constellation of dots and dates speckled across an outline of the human body. My body.
If this map had a legend, its symbols would denote moles, freckles, lesions, papules, pigmentation, bumps and scars. Its title could be ‘Typical skin of >50 y/o Australian settler, colonist (orig. Irish/Scottish)’. This sorry document charts two things: the landscape of my epidermis, and time. Bathed in white light and with nowhere to hide, the only certainty is that more dots will appear on future iterations of my skin map.
United in a shared financial arrangement that doesn’t come cheap, the Australian healthcare system and I are paying Dr Ming to answer one question above all others. I visualise a caricatured drawing of a government health bureaucrat, medic and patient leaning in together to peer at something the size of a dried lentil on my leg. Is it skin cancer? Almost 10 per cent of all spending in the Australian health system covers consultations to do with non-melanoma skin cancers.2 These include basal cell carcinomas (BCCs), which is what Dr Ming is most likely to find on me. (Australians must be the only people on Earth who see that acronym and, rather than thinking of the ‘blind carbon copy’ email field, immediately picture cancerous growths. Or I do, at least.) Once or twice, I’ve discovered these non-invasive growths – the world’s most common cancer – on my face myself. They also go by another disgusting name: rodent ulcers. Dermatologists describe BCCs as small bumps, red scaly spots that don’t go away, or pearly lumps. These criteria seem reasonable until you identify quite a few pearly lumps on your skin. Surely, you panic, they can’t all be BCCs.
Basal cell carcinomas are caused by sun exposure that triggers a mutation in the DNA of one of the skin’s basal cells. We’ve seen Monty Lyman’s description of sunlight’s action on skin as ‘slicing DNA’. London dermatologist Dr Hélène du P. Menagé uses the analogy of tattooing to explain the damage sun can do, leading to a range of skin cancers. Essential for life on Earth though it is, ‘the gamut of waves within sunlight includes ultraviolet B waves (UVB), which can effectively “tattoo” our DNA, causing signature changes that can eventually lead to cancer’. UVA might not attack DNA directly, but is not off the hook because it causes free radicals to form. Menagé says, ‘They whiz around and also damage our DNA strands.’3 The Australasian College of Dermatologists website, which has an A to Z of every skin condition you can think of, and many you didn’t know existed, says that BCCs are most common in people with a Celtic background. Snap! It’s me. Any shade of skin can develop skin cancers, particularly melanoma, but the level of risk about how your DNA might be ‘sliced’ or ‘tattooed’ by sun exposure varies, depending in part on how ‘melanated’ you are.
Andrew Ming works in a few dermatology practices across Sydney and sees all types of skin, and all levels of anxiety. ‘Sydney – and Australia – are very multicultural. I had a patient come in today from South America with more olive skin than me.’ (Ming’s skin is quite olive.) ‘I ask, “What are you here for?” She says, “I’m here for a skin check. A friend of mine was diagnosed with a melanoma and was shocked I’d never had a skin check, even though I’ve lived in Australia for ten years.” And I’m thinking, “Sure, but your skin risk is very low indeed.” So, I did the skin check and said, “You’re fine. You don’t have to come back every year.” She didn’t even have that many moles.
‘People with Asian backgrounds come to me for skin checks,’ he says, adding with a grin, ‘I’ve never been for a skin check myself. I don’t get my brothers and sisters to have skin checks even though we were all born here and grew up in Australia. Our risk is low. But it’s a difficult message to balance out. I put on sunscreen. But it’s really those with the White, Anglo-Celtic/Northern European background who are more at risk.’
That would be me. I’m in my early fifties and have had five BCCs cut out over the past twenty years. Once you’ve had four, your chances of developing more stand at 90 per cent, so it’s a safe bet they won’t be my last. That is depressing, but I’m in good company. I came to enjoy the awkward hokey-pokey dance my fellow fair-skinned Australians launched into when I told them I was writing about skin cancer. Twisting and stretching, they pointed to one they had on this side, one they had on that side, another over here, that one under there.
Let me tell you about mine. If you stand close to me in good light, and if I’m not wearing makeup, you can see scars from two excisions huddled close on the space between my lip and my right nostril. Those BCCs, and another on my hairline, were removed by a plastic surgeon. This top-shelf procedure is more expensive but serves one’s vanity because, in theory, you end up with a less prominent scar. Andrew Ming tells me that when it comes to scarring there are many variables. He quotes a colleague who says, ‘“Fifty per cent is me, fifty per cent is you.” If things go wrong, we both share the blame. If things go well, we can say you heal well, and I did a good job.’ I think he’s being too modest about his surgical skills, but Dr Ming says he’ll do it himself if a patient says they’re not worried about the scar given its location. Plastic surgeons are highly trained specialist surgeons who deal with reconstructive and reshaping surgery, including microsurgery, following burns or trauma on all parts of the body. (Yes, many do cosmetic work, but are more qualified and better regulated than so-called cosmetic surgeons.) Plastic surgeons often end up doing tricky excisions for skin cancers that run deep, are perilously close to other organs (the eyes, the brain) or that require skin grafts (or ‘flaps’, as they call them in the trade).
Another BCC was removed from the boniest point of my clavicle; the scar there is usually, but not always, covered by clothing. I have a scar I can’t see where one was cut out from my back. BCCs are curable, but will enlarge ‘relentlessly’ if not treated, usually by surgical excision accompanied by pathology to make sure the practitioner – a GP, a dermatologist, a general surgeon or a plastic surgeon – got it all.4 Pathology plays a role every step of the way: Andrew Ming says he sends all skin samples taken from his patients off to the lab as a matter of course. Die-hard cells – not a technical term – can regroup, and they will, if not properly monitored.
Hearing one of the C-words – cancer or carcinoma – isn’t so scary in this clinic, because BCCs ‘are not the kind of skin cancer that kills you’. This blunt assessment came from the first dermatologist I ever saw, referring to what I now think of as my OG BCC. Yet Ming tells me that even though ‘carcinoma’ is the third word of an acronym most Australians can spell out, our attitudes towards skin cancer can be so blasé that, ‘A lot of people don’t realise that BCCs are even cancers. I’ll see people for the first time and ask, “So, have you had any skin cancers?” and they’ll say, “No, I haven’t, Doc.” And I’ll look through the notes and say, “Oh, but you’ve had basal cells,” and they’ll reply, “Oh, but I was told they were fine.”’
Ming has to explain to complacent patients that such a prognosis may be technically true, ‘But they are still cancers. Because they grew. It’s a benign cancer, so to speak, because it doesn’t get into your bloodstream . . . so it’s more of a nuisance.’ Squamous cell carcinomas (SCCs) score higher on the index of concern. They’re messier and can metastasise, spreading into lymph nodes if left to their own devices. Right on cue, as I was in the middle of writing this chapter, an SCC popped up on my leg. (My body turning itself into a real-time case study makes good material but fed my anxiety no end.) This one was a squamous cell carcinoma in situ, which is also known as Bowen’s disease. But they too are curable, the treatment most of the time, again, being excision. Since then my nine stitches have been removed and I have a neat scar on my calf, healing nicely. Neither of these two skin cancers, BCCs or SCCs, appear on Australia’s official register of cancer diagnoses.5 If they did, they would sit in top position for prevalence.
Andrew Ming’s specialty is in fact paediatric dermatology, but looking back over his appointments for the day he tells me that, ‘Fifty per cent of my afternoon was still skin cancer, even looking at some kids’ moles.’ The gobsmacking statistic that two out of three Australians will have some kind of skin cancer by the time they reach seventy years of age, and the fact that it’s hard to get an appointment with a dermatologist even in a private setting, explains why his cases pan out this way every day.
The worst-case scenario in this room would be hearing the M-word. Melanoma can kill. The most aggressive form of skin cancer, it forms in melanocytes, the skin’s pigment-producing cells. I ask Andrew Ming if he picked up any melanomas this afternoon. He answers so matter-of-factly I may as well have asked if he had lunch today. Pointing at his desk he says, ‘I’ve got two reports from last week right here on patients with melanomas. It comes in dribs and drabs. Sometimes I’ll go for a few weeks where I haven’t picked up a melanoma. Then I get worried and think, “Am I missing them?”, but then I’ll get four or five in a week.’
Throughout 2020, while most of the world was in rolling lockdowns, I dialled in to dermatology Zoom webinars and spent many an evening as a fly on the digital wall. I tuned in to professional development sessions for GPs and dermatology registrars, melanoma patient forums, research updates from international dermatology conferences. Psoriasis, eczema, vitiligo, acne, Hidradenitis suppurativa (persistent boils and abscesses) and COVID-related challenges with contamination, telehealth consultations or contact dermatitis were often on the agenda. But all roads led to skin cancer.
Even though SPF50 is part of my religion, after a few of these video sessions, going outside on a sunny day during a pandemic seemed as risky for the invisible ultraviolet rays as for the invisible coronavirus. Alongside my pages of notes packed with mis-transcribed drug names, screenshots of suspect lesions and breaking news from clinical trials, I accumulated asterisked lists of melanoma statistics before it got too depressing. Exclamation points annotate the numbers I typed, punctuation that I added almost involuntarily as I grasped just how much Australia and Aotearoa New Zealand are outliers in the melanoma stakes. I don’t know if Associate Professor David Gyorki, a renowned melanoma surgeon at the Peter MacCallum Cancer Centre in Melbourne, and one of the doctors I listened to speaking from his office, is as much a master of droll understatement in his everyday life as he is in professional mode. ‘Melanoma is a big problem in Australia,’ he said. Gyorki must see melanoma when he closes his eyes. He doesn’t need to add an exclamation mark.
Melanoma is Australia’s national cancer. Along with Aotearoa New Zealand, we have a rate of melanoma incidence two to three times that of Canada, the United States or Britain. We have almost twelve times the worldwide average rate of melanoma.6 In Australia, one in fourteen men and one in twenty-two women will develop invasive melanoma in their lifetime. It is now the third most common malignancy in Australia, behind colorectal, breast and prostate cancer. Incidence of the disease is rising steadily at 3 to 4 per cent each year, although for people under forty melanoma is decreasing, a happy statistic.7 The rise is much steeper in men, where melanoma is most commonly found on the torso, than in women, where it is most commonly found on the limbs. The good news is that survival rates are improving. But still, close to two thousand Australians die from melanoma each year. Melanoma diagnosis doubled between 1986 and 2006. One person in Australia dies from it every five hours. Melanoma makes up only 2 per cent of all skin cancers, but 75 per cent of skin cancer deaths. These devastating stats, with glimmers of hope scattered throughout the numbers, go on and on.8
Two of my favourite slides from the many presentations I watched had no statistics or diagrams, nor those gruesome close-ups that are no fun for the squeamish. In a welcome gear change, they showed that art and photography had something to say about patterns, classification, visuals and the way the human brain operates when trying to identify one thing sitting in the midst of other similar-looking things. One slide was a shot taken from the Hubble Space Telescope, showing thousands of galactic stars spilling across the screen, luminous against the blackness. Dermatologist Dr Samuel Zagarella, who shared the photo, asked the people gazing at it: ‘Do you see a naevus in there, or a galaxy?’ (A naevus, or nevus, is the medical term for a mole.) He wanted his star-packed astronomical image to show that our brains want to find gestalt patterns, where the whole is perceived as more than the sum of its parts, but melanomas won’t comply. The limitations with what dermoscopy can diagnose don’t always help, either.
Professor Pablo Fernández-Peñas, in another session, brought up a slide that showed paintings by Picasso, Miró, Dalí, Goya, El Greco and Velázquez. ‘What do they all have in common?’ he asked. I tried to see beyond the category ‘famous Spanish painters’, but dermatological – or even artistic – connections between melting watches, a civilian massacre in Guernica and Renaissance noblemen in Toledo eluded me. His lesson was that even though they could be grouped under a broad category, each individual painting had its own context and contained layers of unique information. Identifying that information and understanding what it transmits requires finely honed visual skills. Spanish art history becomes analogous for the difficulties of looking at a sea of lesions and picking out the melanoma.
One US study he cited (published in the prestigious peer-reviewed journal BMJ) presented a question and a set of images to a group of experts in melanocytic lesions. These lesions range from benign freckles to pigmented naevi to malignant melanomas. If it sounds like a parlour game, the question attached was a deadly serious one: ‘Which one is the malignant mole?’ Concordance – where the specialists all agreed – was impressive, at 92.2 per cent. But, sadly, that was only for the benign moles. There was more disagreement than not about the malignant ones – the ones where being more certain, if not resolute, could save a life.
Fernández-Peñas said to me later, ‘You know, to remove a melanoma in their own practice, most GPs will need to cut out thirty things [before they find it]. So, you’ve got a lot of people with a lot of secondary scars, acquired as they try to find out which one is the melanoma. That puts a burden on everything. On people, because they end up with all those scars. On the health system, because you’re processing so much. It has too many implications.’ ‘Just in case’ biopsies cost $70 million a year in Australia. Pascale Guitera tells me in the United States it’s even worse. ‘Doctors have multiple legal issues and can get sued, so they remove too many lesions, just in case.’
Alongside other researchers and clinicians, Fernández-Peñas is driving the use of technology to deal with this epidemic of skin cancer, which is how he describes the scale of the issue. He is part of the collaborative Australian Centre of Excellence in Melanoma Imaging and Diagnosis (ACEMID), which seeks to build a digital map of an individual’s pigmented lesions, detect melanoma early and create the world’s largest skin imaging bank in the process.9 Fifteen machines, called Vectra WholeBody 360 scanners, have been designed with ninety-two digital cameras that stitch images together simultaneously to build a 3D avatar of a mole-laden person in their underwear. At least, that’s what I took from the promo video – I haven’t seen one of these machines in action, or been in one. They look like a sophisticated version of the full-body scanner at airport security, or maybe a roomier, upright MRI machine.
‘Maths is central to melanoma,’ says Fernández-Peñas. A combination of artificial intelligence and big data should reduce the need for biopsies, at least for the kind done with scalpels and stitches. Assessing 3D imaging, clinical data, genomics (where the patient has a saliva test to assess their risk) and liquid biopsies (drawing blood) are all part of this methodology. I learnt about scar-less biopsies, where a small disk is placed on the skin to collect data. This procedure takes advantage of all that movement of skin cells as the skin replaces itself. He says that a scar-less biopsy means that ‘If we analyse the proteins in that skin level we can say “Oh, underneath there’s not a problem,” or, alternatively, “Underneath everything is not okay.”’
Bioinformatics underpins it all, networked across Australia using the Vectras and big data. Fernández-Peñas says, ‘We train mathematicians to be dermatologists, not the other way around.’ It hasn’t started in earnest, but will soon. Using AI to assist clinical decisions won’t put Dr Ming out of a job, but it could make his life easier, not to mention the lives of his patients. And the technology could eventually help those who don’t have direct access to a dermatologist – which is most people – achieve that which makes everything better down the line: early detection.
But before we move away from boosterish high-tech diagnosis, consider this. Dr Victoria Mar of Monash University and The Alfred Hospital melanoma unit, who is herself part of the ACEMID collaboration, observed that most people – or their partners – find their skin cancers. In fact, she says, only between 15 and 20 per cent of melanomas are first found by doctors. My friend Rodney Hanratty’s story shows the visual acuity of dermatologists in a very good light. Like me, Rod has had about five BCCs. He went for a regular check-up, but his dermatologist was running late. ‘I’d been looked at by the resident. The resident was on the computer and I was doing some work in my undies, waiting. My dermatologist has seen me for five or six years and had done all the other BCCs. She walks in and – I’m not joking – in less than ten seconds she says, “What’s that?” It was a melanoma. The other woman had gone all over me, thoroughly. Within a week I had it removed. It was spooky. That’s why John [his husband, who is a doctor] says, “Keep going back to the same dermatologist.” They have a sense of your skin.’
Once or twice over the years I’ve caught myself proclaiming to Dr Ming, all rueful and wistful, ‘I was born in the wrong country.’ Quoting another skin cancer–speckled patient, who said, ‘I guess I’m a White man in a Black man’s country,’ Ming tells me that technically, I’m exactly right. I gaze out the window towards Bondi Beach as I get dressed. I’ve swum in that sparkling sweep of Pacific Ocean for my whole life. It’s why I’m here. Diving into the surf on a sunny day, light and water spritzing over my body, made lighter, free. Swimming in currents of light as much as cool water. Plunging down to touch the sand under a wave, ascending into a rush of sunlight. Pure joy.
Sydney’s glorious coastline unmasks my disingenuousness. I don’t really think I was born in the wrong country. Is it an abrogation of responsibility to imply that whatever Dr Ming might find, it’s not my fault? Not my fault that I inherited the white skin of my ancestors, unpigmented by rainy, cool climes with gentle sunlight. Like a self-pitying teenager, am I whining that I didn’t choose to be descended from pale settlers who colonised a ferociously sunny distant land? Not my fault that I grew up in a beachside suburb before the Slip! Slop! Slap! public health mantra transformed our behaviour.
How was I to know that your skin remembers everything? When you were a teenager playing tennis for hours on a court without a shade-giving tree in sight, sweating off the sunscreen you forgot to reapply? Your skin remembers. That time you were ten and a friend’s father took you to the beach where you swam for hours, sizzling, protected by nothing but a smear of zinc cream on your nose? Your skin remembers.
The fairness of my skin may cost the health system money, the excision of cancerous cells may cause me discomfort and I must never step out of my house without slathering SPF50 over my exposed skin. But I grew up in a land and a time where White people proudly displayed their post-sunburn peel. Wore as little as possible to expose as much bare skin as was legal. Applied fake tan while working on acquiring the real thing. But now we live in the flipside of sunny paradise. We walk around with steristrips holding our biopsied skin in place. Bits are chopped out of us, our bodies scarred and maimed. Our faces look wrinkled and weathered, older than they really are, thanks to excessive sun exposure. We spend our lives sitting in waiting rooms for appointments to get things on our skin checked out, burnt off, cut out, sewn up. Our treatment regimens will last a lifetime. I fit right in.
‘My melanoma story started in 2012. I had a big one that was removed from my back. It was such a singular kind of threat. I always thought, “I’m probably going to get it,” given my skin and the sun exposure I had.’
Michael Brady is sitting across the table from me in a cafe, telling me a harrowing story that he intersperses with smiles and laughs, even though his ordeal is far from over. He’s excited to be here because, thanks to COVID, it’s the first time he has travelled for a year, and if there’s one thing he loves, it’s a road trip. (The Instagram hashtag for his journey to Sydney was #RoadTripOfLove.) I’m excited to be sitting with him, drinking coffee and eating muesli and papaya, feeling a little emotional because I know Michael and am thrilled to see him.
Mike and his partner, Dale Campisi, describe themselves as a creative couple. Together they make the world seem full of possibilities and stories; just keep your eyes open and you’ll see them. We have worked together on various books, with Mike as photographer and designer. Few people can dress as exuberantly as Mike does, combining block colours and prints, and still look like the coolest person in the room. When he walked into the cafe, I realised I’d forgotten how tall he was. He was always lean, but I wondered if I was imagining that he was thinner. I do know that I’ve never seen Mike with a bare head – his hat game is impressive.
Mike and Dale divide their time between Melbourne and Tasmania, where Mike grew up. They have been restoring rundown cottages and making an extensive garden at Hunting Ground, their property in the Lower Jordan River Valley, just out of Hobart. It looks beautiful in photographs and in real life, as I discovered when I visited in 2021. But what looks like an idyllic Instagrammable life from the outside took a bad turn towards the end of 2020. Mike is telling me the story that led to his night from hell from the beginning.
‘Tassie has harsh sunlight, but I didn’t really spend a lot of time in the sun. I don’t remember getting sunburnt as a child, but I do pinpoint one specific event, one day of my life, when I was ten. I was in Queensland, on holidays, staying with my dad. He was living in Cairns and we went out to Green Island on the Great Barrier Reef. There was no sunscreen, no “Wear a shirt!” Even at that age I was aware of sensitivities, that my skin could burn. But I was having such a great time. It was my first time snorkelling, looking at all the tropical fish, so I spent hours face-down in the water with nothing on my back whatsoever. And it was the absolute worst sunburn I’ve ever gotten. The recovery from that day, the burn, it was horrific. Everyone was trying all kinds of remedies, rubbing cold tomato, vinegar, this and that. I was in absolute agony and literally lost all the skin off my back. That’s where I think it started.’
There is one relevant piece of information that I’ll share by way of a snippet from the television series Rosehaven, about a real estate agency in a Tasmanian town. It’s a scene where Daniel, played by Luke McGregor, is with Emma, played by Celia Pacquola, leaving their house. He’s holding a parasol. He checks his phone, and this conversation follows:
Daniel: UV is above two. Once it gets above three, I’ll need protection.
Emma: How high does it get?
Daniel: Eleven.
Emma: Why don’t they just stop at an even ten?
Daniel: I don’t know. Climate Change? Spinal Tap?
Emma: What happens if you’re outside when it’s eleven?
Daniel: Instant cremation.10
Comedian and actor Luke McGregor is a pale-skinned, blue-eyed redhead. So is Michael Brady. Mike tells me that he really admires McGregor for appearing on television all red and blotchy when he was in the middle of treatment for solar keratoses, which can be a precursor to squamous cell carcinomas. Redheads are in the highest risk category for melanoma. So, when Mike spotted a dark mole on his back in 2012, he wasn’t entirely surprised. But, he says, ‘It was a fluke that I saw it. We were at a friend’s beach house getting ready to go down for a swim. I was probably trying to put sunscreen on my back, and I looked in the mirror and saw this black spot. I hadn’t noticed it – I suppose I hadn’t really looked at my back before. It was like an alarm bell sounding. I thought, “This can’t be good, it’s too dark” – like all those bad photos you see in the doctor’s surgery.’ Indeed, it was melanoma. But it was removed, and because he was now more diligent in the sun than ever, Mike thought, ‘That’s that. It’s over.’ But it wasn’t.
‘A few years ago, I had stomach pain. The doctor put it down to irritation. It wasn’t properly investigated. I’d been drinking a shitload of coffee, so I cut coffee out of my diet. And it went away, so I thought, maybe I’ve just got a sensitive stomach. Then, that irritated pain, a scratchy feeling like you’ve swallowed sandpaper, came back. And I was like, okay, here we go again. I’d been drinking coffee again. I cut it out, which helped, but it was still there.’ He started feeling serious, debilitating pain. ‘It got to the point where I thought, “Something really bad might happen now.”’
He tells me about a panicked, agonising drive to hospital in the middle of the night. ‘I’m telling them, “I’m in pain. This lump has appeared just below my belly button.” I’d also developed this big lump here.’ He points to his collarbone, and I can see it. ‘They looked at it and said, “That looks like nothing to worry about. We’re still concerned about this other one . . .” But they sent me home! With hindsight I should have said, “Please, get me scanned. Don’t send me home after what I’ve been through.” But you put your faith in them, and think, “Well, if the hospital is sending me home it must be all right.”’
It took another emergency trip to hospital to diagnose ‘the angry monster’ inside him, as he calls it. While he was waiting on test results from his local GP, results that seem to have been mislaid and which could easily turn this story into one about medical negligence, ‘the pain came back again. Beyond the edge. Probably worse than the first time. Back to emergency. I didn’t think I would survive that journey. It was agony.’ There is anguish in his face as he recalls this traumatic trip, lying in the back seat screaming as Dale drove, crying. ‘We ended up at Brighton, an outer suburb between us and Hobart. I thought, “I’m not going to make it. This is beyond anything I’ve experienced.”’ Dale called an ambulance. ‘They were giving me everything they could to help with the pain, but it wasn’t touching it at all. It’s very unlike me to be screaming in public. You know it’s bad when you literally can’t control it. My body was contorting. It was a completely agonising experience.’ My own shoulders relax when he tells me he finally got morphine.
‘By three am I had been operated on. After twelve hours in a bed in a corridor, but at least I was morphined out of my mind. I was aware of what was going on. Dale couldn’t come in because of COVID. All my emergency experiences recently have been alone. Not fun, but that’s the way it is.’ He tells me what they found during the operation. ‘They thought they were there to remove one obstruction. In the process they found two other tumours, including the one that I had pointed out twice that was visible on my body. You could touch it. You could feel it. It was also a melanoma. A small one. So, two small ones and one very large one. The large one resulted in fifteen centimetres of my small intestine being removed. It was a decent-sized tumour. I think the others were three centimetres. All removed in one go.’
Recovery from major intestinal surgery is tough, but Mike came out of it well, saying he felt as if he was in a dream, surrounded by kindness. But more bad news was to come. His oncologist had to break the news about what had been found in a CT scan done just before his surgery. She explained that as well as the tumours in his stomach, there were more in his lungs. ‘So, basically, the diagnosis was: it’s melanoma, it’s metastasised. You’ve got this large tumour and two small tumours, and it’s spread to your lungs. And if you don’t receive any treatment from now, we give you six months.’ Mike is forty-five years old. ‘I don’t think I was able to absorb that. There was shock and tears. Telling my loved ones, that was hard. I was definitely in some kind of denial. But somehow, I accepted it. I had been suspicious, but I really didn’t think a melanoma could end up in my stomach. I had no idea.’
And that’s when Mike returns to his original diagnosis, back in 2012. ‘I never, never received a suggestion this could have metastasised already. No one said, “Go and get scanned.” I was just relieved to have it out of me, so I put it to the back of my mind. But it seems that’s what happened. I thought melanoma only existed on your skin, not inside you.
‘Immunotherapy seemed to be a good option,’ he says, telling me about his conversations regarding treatment with his oncologist. Immunotherapy uses drugs to trigger the body’s immune response to recognise and destroy melanoma cells.11 Mike happened to have a neighbour with melanoma who had been through immunotherapy. ‘He’s gone from having several melanomas in his stomach to none several months later. He’s been so lucky, but I can’t necessarily hope for the same result.’ So far Mike’s scan results have been encouraging, though there have been complications. Still, he says, ‘It sounds weird to say, but I’m thankful I was diagnosed when I was. If I had been scanned in 2012, I would have been treated with chemo or radiation, not immunotherapy, and it would not have been effective. At least this exists now.’
He’s right. Until recently, the outlook for patients with melanoma as advanced as Mike’s was not good. Melanoma specialist Pascale Guitera said to me, ‘To be honest with you, when I was working and finishing my PhD at the Curie Institute [in Paris] and decided to stay there, I was very much protecting myself. I was doing a little bit of surgery, but everything that was metastatic was in the hands of the oncologists. It was a very depressing and difficult time. But now I love it. We have these new immunotherapy and targeted therapies – they have been happening over the past seven to ten years with fantastic results.’ When I ask her if the prognosis is much better now, she answers in one word. ‘Absolutely! We know now with melanoma that if you tweak the immune system, it can detect the melanoma and remove it. Even when it was completely widespread and killing the person! So, we have spectacular remission of people who were totally crook, with metastases all over the place. What we like with immunotherapies is that if the immune system knows how to find the melanoma, it may remember forever. It’s not like with chemo, which kills every cell dividing itself but then, six months later, the whole thing is back, and you need to “poison” your patient again. With these new therapies, it’s in your body, in your immune system.’
Mike jokes and says, ‘You know, immunotherapy, it sounds so “wellness”. It’s very easy to suck yourself into that “just doing treatments, it’s going to make me better, it’s a game-changer” vibe, all the good things you hear about it. I don’t know a huge amount about these drugs except that they are so toxic.’ Indeed, his treatment had to be put on hold for a bit because his liver was so inflamed. Now he is living in a world of infusions, pill-popping, steroids and twice-weekly blood tests. The waiting game, hanging out for the next scan results, takes a mental toll. He says, half rolling his eyes, ‘I’m looking forward to having a drug-free future. I’m in a catch-22 situation where I’m taking drugs for the cancer and drugs for the side effects.’
He is no pollyanna, and he says the steroids can make him say monstrous things to Dale that later he doesn’t even remember having said. But, he says, ‘I’m obsessed with staying positive. Counting my blessings. Valuing all the good, important relationships in my life. It’s helped me to sort out all my mental and emotional baggage. All that stuff has fallen away now. It makes you realise what’s important, who’s important and how important your body is. It was a scary mystery, what goes on inside me. I knew something wasn’t right, but it wasn’t wrong enough for me to do something about it until everything came to the crunch. It’s so common. I hear cancer stories all the time now. It’s like when you buy a red car and all you see is red cars. I can’t hear a cancer story without crying. The amount of tears I’ve shared in the past few months! It’s been a wonderful healing release of all the fears I’ve had for years.’
‘Stuff social distancing,’ he says. We stand up and hug.
Mike celebrated being able to get off all the drugs in 2021. For all its complications, the immunotherapy worked for him. He says that for now, at least, his ‘cancer story is in hiatus’, a word he uses deliberately, because more tumours may emerge. But at least now he knows he has a future.