72-year-old peritoneal mesothelioma sufferer Joan Behrend with her daughter, Irene. Credit:Thom Rigney Standing near the charred ruins of the garage, in the uncanny stillness that follows a fire, the Behrends were in shock. But it wasn't the loss of the prized, hand-made model airplanes or the Ford Fairmont that was racing through their minds. Only moments before, the chief fireman had approached them in his thick protective gear. "Your house is full of asbestos," he warned. "You've got to get out." That night Joan and Peter moved into their daughter's place, contacted their insurance company and organised for a licensed asbestos removalist to take away all the fire-damaged sheets. After a lifetime of renting, and struggling to raise their three children on limited incomes – Joan worked in factories and Peter as a fitter and turner – this had been the first home they could truly call their own. After purchasing the rundown cottage in 1988 when they were both in their 40s, the couple immediately set about renovating, ripping out the old kitchen, tearing fibro sheets away from around the bath to reveal striking claw feet, and rebuilding the veranda. At the end of each work day, Joan would sweep up all the dust and collect the broken pieces of cement sheeting, stirring up small clouds of dust that parched her throat. When the couple tore up some old floorboards, they found piles of flat, dusty sheets underneath, many splintered and broken, which Joan climbed under and removed. There was no warning these contained asbestos.

It's been estimated that as much as two-thirds of the asbestos installed in homes in the 1940s, '50s and '60s is now reaching the end of its lifetime. Credit:Africa Media Online / Alamy Stock Photo Some weeks after the fire, once the asbestos cleaners had been through, and the builder had repaired the back of the house and built a new garage, the couple moved back in. The Behrends remained there until 2015, when they upgraded to a more modern, low-maintenance home in nearby Pakenham. Joan had by this stage become a full-time carer for Peter, 75, whose health was in serious decline from kidney disease and diabetes. In March this year Joan suffered a catastrophic decline in her own health, beginning with severe abdominal bloating and sharp shooting pains down her legs. After a merry-go-round of tests that included a CT scan and biopsy, the 72-year-old was given a grave diagnosis – peritoneal mesothelioma, a highly aggressive tumour caused by asbestos exposure – and told she had six to nine months to live. In the hellish months since, she's been through a course of chemotherapy and, almost weekly, has had six to seven litres of fluid drained from her abdomen. The pain is excruciating. "There have been times when I've screamed the house down," she laughs grimly from her bed at McCulloch House, a palliative care unit at Monash Medical Centre. "They can't do anything now, so it boils down to just trying to manage the pain." Watching her mum in constant agony has been a source of anguish for her daughter Irene, a mother of three boys. At the back of all their minds, however, is the long-term toxic legacy of the house in which she and her sisters Diana and Tricia spent their teenage years. "I'm deeply concerned for myself and my sisters and from now on we'll be monitoring our health closely," says Irene.

Frequently you can't see [asbestos]. That's what drives me crazy about shows like The Block ... Young people tear out walls and ceilings in old homes with little thought of what they're made of. Barry Robson, president of the Asbestos Diseases Foundation of Australia Throughout her ordeal, Joan has maintained her trademark humour and resilience. "You have to be strong – for your family," she reflects, gazing out at the manicured garden through her hospital window. If your house was built before 1990, there's a good chance it contains at least some building materials composed of asbestos (about one in three, according to federal government estimates). Not just in those iconic fibro houses of the 1950s and '60s, either, but in brick, weatherboard or clad homes, or in post-war apartment blocks. Asbestos could be in your corrugated roofing, guttering, eaves and downpipes, in the lining behind tiles in kitchens and bathrooms, in old hot water systems (including flues), even in carpet underlay and some glues used to stick down linoleum. It could be in your fence, your garage or garden shed, or in the brake pads or gaskets of the old motorbike or car you've got stored there. That's because between 1945 and 1975, we were, per head of population, the highest consumers of asbestos goods in the world. We mined it, manufactured it and installed it in our homes, workplaces, hospitals, schools and even water pipes (about 40,000 kilometres of Australia's pipelines contain asbestos cement), as well as in hundreds of domestic products from oven mitts to toasters. Lauded as the miracle building product of its time, the silky, flexible fibres of asbestos were woven into fabrics, mixed in with cements for fireproofing sprays and bonded into tough, durable construction sheets.

The material is hazardous only when it's broken or worn out, and the fibres released. But here's the cruel kicker: it's been estimated that as much as two-thirds of the asbestos installed in the 1940s, '50s and '60s is now reaching the end of its lifetime. Exposure to the weather, particularly hailstones and heavy winds, means it's very likely to be friable: crumbling and releasing small tufts of fibres into the air. Around 200 times thinner than a human hair, asbestos fibres can be easily inhaled or swallowed once they're airborne. They lodge themselves into the membrane outside your lungs and abdomen and never leave, your immune system unable to expel them. Three main types of disease result from exposure: asbestosis (from heavy exposure to the dust, resulting in permanent scarring of the lungs); lung cancer; and malignant mesothelioma (usually from more limited contact, resulting in cancer of the membrane covering the lungs and lining of the abdomen). All three can take between 20 and 40 years to develop after exposure to the toxin. Because the initial symptoms – shortness of breath or a swollen abdomen from fluid build-up – are also seen in other common illnesses, mesothelioma is frequently misdiagnosed. The first wave of victims, mostly miners and heavy industry workers who were exposed to asbestos on a daily basis, are, sadly, almost all dead. The second wave – tradesmen, construction workers, insulators, mechanics and navy personnel – were mainly exposed before the first bans came into place in the 1980s. (Asbestos was removed from building boards by 1983, from corrugated products in 1985, from cement pipes in 1987 and from brake pads and linings in 2003, the year an Australia-wide ban on the sale or import of asbestos products came into force.) Today, most new victims have been exposed in the home: a wider and younger range of sufferers who've inhaled the deadly fibres while doing renovation work. Most of the third wave suffer from mesothelioma, not asbestosis, but share the same dire prognosis: less than 12 months to live. The incidence of mesothelioma continues to rise, with some officials suggesting it won't peak until 2030. Try this experiment: ask a handful of your friends whether they know someone who's been exposed to asbestos. You may be surprised by how many stories you'll hear. It's estimated that around one in 15 of those exposed will go on to develop an asbestos-related disease.

On the way to interview one of the subjects for this story, Good Weekend photographer James Brickwood tells me that as a child growing up in Sydney's northern beaches, he smashed pieces of asbestos from a backyard shed. James is just 37. A casual chat with a young woman at my local nursery reveals that her grandparents' family home in Canberra was one of the 1000 houses bought back by the federal government in 2014, and earmarked for demolition, as a result of the Mr Fluffy insulation disaster. (During the late 1960s and '70s, insulation operator Dirk Jansen sprayed a particularly hazardous form of loose asbestos into roof cavities across the ACT and towns like Holbrook in NSW, which eventually permeated wall cavities and cracks in ceilings.) In the office I'm reminded of Trevor Grant, one of The Age's most respected sports journalists, who died from mesothelioma earlier this year, either from asbestos exposure during home renovations, or from lagging on pipes in the old The Age building. And when I return home one afternoon I'm confronted with the sight of three men in hazmat suits, masks and rubber boots, removing asbestos from an old garage opposite, warning passers-by to keep away. For the hundreds of thousands of us who have been exposed to asbestos fibres, it does pop up in our thoughts. I grew up in the 1970s in the southern suburbs of Sydney; my bedroom was part of a fibro extension tacked on to the back of an old weatherboard cottage. In my teens, I'd help my stepfather, a qualified carpenter, drill directly into the fibro as we put up awnings over my windows and shelves in the adjoining laundry: I clearly recall flickers of grey dust flying back into our faces. My stepfather, a Scot with a devilishly dry sense of humour, died at 61, within six months of retiring, gasping for dear life. A smoker since his teens, he succumbed to emphysema. I have no idea whether the asbestos played any role in his death; he was never tested. Regardless, his final moments were not peaceful. The late Bernie Banton, leading figure in the compensation fight against James Hardie, hugged by industry workers in December 2004. Credit:Jack Atley At least 10,000 Australians have died from mesothelioma since the 1980s, and that's expected to reach 18,000 when it peaks some time in the 2020s, according to the Australian Institute of Health and Welfare. Up to 800 people a year die from the disease, according to the Australian Mesothelioma Registry. And that's just mesothelioma: it doesn't count those who've developed asbestos-caused lung cancer (only asbestosis and mesothelioma can be pinned with near certainty to exposure to the deadly fibres). The real figure, when it encompasses asbestos lung cancer victims, is likely to be at least two times higher, according to the Asbestos Safety and Eradication Agency. Add the countless thousands who perished from asbestosis in the pre-diagnostic 1940s, '50s and '60s, and it's not being overly dramatic to describe it as Australia's carcinogenic catastrophe.

And yet, when I tell a journalist colleague I'm working on a feature on asbestos, he dismisses it as "yesterday's story", a cancer limited to old men who toiled in mines or dusty asbestos factories, epitomised by the late Bernie Banton, whose brave and dignified fight for compensation against his former employer, James Hardie, became the stuff of media headlines and a TV miniseries, Devil's Dust. (It's the 10th anniversary of Banton's death on November 27.) Less well known are some of the people who've died or become seriously ill after being exposed to asbestos in the home at a very young age: Queensland martial arts champion Adam Sager was diagnosed with mesothelioma in 2006 and died less than a year later, aged 25; his parents had unknowingly exposed him as a baby while remodelling their first home. Sydney mother-of-four Serafina Salucci was diagnosed in 2007 at 37; she was exposed as a child, when her dad built a garage at their family home with asbestos-laden cement sheets and she used the offcuts as frisbees and chalk. Salucci, who now has just one lung, has so far beat the odds. Mesothelioma frustrates doctors no end. I ask Professor Ken Takahashi, director of the Asbestos Diseases Research Institute, about the two central mysteries of the disease: why it lies dormant for decades before suddenly turning into a turbocharged cancer, and why some people exposed to asbestos succumb to a cataclysmic illness while others walk around symptom-free. "These are the two things scientists, including myself, still don't fully understand," he explains, adjusting his glasses in his office at the institute, which is located at Sydney's Concord Hospital. "Mesothelioma has a longer latency time than cigarette smoking and because we don't know who will go on to develop the disease, there is no safe level of exposure." Asbestos-related diseases have no cure. "We don't even have a drug to treat the disease once a diagnosis is confirmed, much less one that will prevent its development once someone has been exposed to asbestos dust." What's worrying authorities now is the number of products from India, China and Russia, which still manufacture asbestos, making their way illegally into Australia. Over the past five years we've had product recalls of counterfeit Toyota brake pads, Dora the Explorer crayons, hardware sheeting and camping goods, all of which were found to contain the deadly mineral. Despite the best efforts of our first line of defence – the Australian Customs and Border Protection Service – asbestos products still slip through the net. Particularly at risk are individuals ordering small quantities of hardware products online; visit the website alibaba.com and you'll see a vast Aladdin's cave of building and decorating goodies, some labelled "asbestos free" and others not.

Even the "asbestos free" tag can't necessarily be trusted, warns Takahashi. A scientist who advises the World Health Organisation, he's spent the last decade regularly travelling throughout Asia and Russia. He describes visiting factories outside Hanoi with signs out the front proudly proclaiming its products "asbestos free", only for him to stroll around the back of the property and see hundreds of bags containing asbestos, imported from Russia and China, piled up. "Just because a company charges more for a product it calls 'asbestos free', there's no guarantee, because of the loose labelling system in some countries, that it doesn't include asbestos components," he says. "Indonesia is a very heavy user of asbestos now." Mercifully, Australia is ahead of the pack. Canada won't introduce a full ban on asbestos until next year, and in the US, the weakening of the Environmental Protection Agency under the Trump Administration may reduce controls. (In his 1997 book The Art of the Comeback, Donald Trump declared asbestos "100 per cent safe".) While Australian safety laws require asbestos in workplaces, schools and hospitals to be recorded, with strict rules around how the material is handled and removed, there are currently no regulations covering its identification in the residential sector. Barry Robson, president of the Asbestos Diseases Foundation of Australia, says the investigate-before-you-renovate message just isn't getting through to young people obsessed with DIYing. "You can't smell it or taste it – and frequently you can't see it," says Robson of asbestos. "That's what drives me crazy about shows like The Block, Better Homes and Gardens and Grand Designs, etc. Young people tear out walls and ceilings in old homes with little thought of what they're made of. All we're asking for is a short, 10-second message warning people not to renovate until they check for asbestos. Yes, we do need to be worried." Angela Marsh successfully claimed compensation through Slater and Gordon, but litigation is often fraught. Credit:Peter Mathew Hardly anyone worried about asbestos in the late 1960s when Angela Marsh was renovating her first home, a fibro cottage in Sydney's Wedderburn, with her husband Paul. "The house was built to lock-up stage and we finished it off on our weekends, cutting and sanding off rough edges of the fibro," says the 72-year-old, who now lives in Dodges Ferry, east of Hobart.

The couple sold the house in the early 1970s and moved to Tasmania, where they renovated a home in Taroona, just south of Hobart, knocking out walls and ceilings, some of which contained asbestos. From there they upgraded to a house in Seven Mile Beach before building another seaside home in Carlton. "We just loved what we did, never thinking we were exposing ourselves to a dangerous material," she says. There was another, more powerful, reason for their restlessness in recent years. "We had one son and he died 12 years ago." A pause. "I guess we moved around a lot." Marsh can recall the moment in 2013 when she realised something wasn't quite right. The couple had sold the Carlton house after deciding to live apart. Marsh moved to Dodges Ferry, where she'd bought a block of land and set about building her own home. "I was digging a channel and becoming quite breathless. I'd always been very fit – going to the gym, running – and friends were telling me I was coughing a lot." She didn't seek medical advice until 2015 ("it's amazing how you can convince yourself you're getting better and keep putting off seeing the doctor"). When she did, a CT scan and biopsy confirmed the worst: she had pleural mesothelioma, the most common form of the cancer, which destroys the lining around the lung. The tumour was far too advanced for surgery; all doctors could do was give her a course of chemotherapy to slow its growth. For the moment, she's doing well. ("I've just had a test and my specialist says the tumour hasn't grown.") Marsh describes how she's now having the toughest conversations of her life: how she will donate her body to science, has given a trusted friend power-of-attorney, and would explore euthanasia if it was legal. "Mesothelioma isn't a good way to die; I'm not sure how I'll cope with palliative care."

Sorting out end-of-life issues doesn't mean she's giving up, however. She's still working in her garden, visiting Paul ("We're much closer when we live apart") and walking her two toy poodles, Beau and Leo, along the beach. She's due for her next scans in December. Like Marsh, Peter Jackson's tumour is inoperable. "Let's just say I won't be booking a trip overseas next year," the 74-year-old says drily over his kitchen table in a rambling bungalow on Sydney's north shore. "It's a shit of a way to live, because of the uncertainty." Jackson's two brothers have already died of mesothelioma: Keith, a finance consultant, nearly 30 years ago at 49, and Alan, a retired policeman, 12 years ago, aged 72. All of them grew up on their parents' farm, Sunrise, at West Wyalong, where "asbestos was everywhere": in the outhouses, sheds and even the cracked outdoor shower where they washed after doing maintenance work on the farm. "It wasn't until Alan's death in 2005 that I began to worry about the asbestos on the farm and have X-rays every two years," he says. "They were always clear, so I told myself, 'Whatever I get, at least it won't be mesothelioma.' "

That was until January 2016, when Jackson had an X-ray and biopsy following continued episodes of breathlessness, and was given the shattering diagnosis of malignant pleural mesothelioma. "I was given 10 months to live; they drained all this fluid off my lungs and gave me a course of chemo." Now on an experimental drug, Keytruda, which can reduce tumours by as much as 40 per cent in advanced cases, Jackson keeps himself busy with volunteer work at Concord Hospital ("You can't just sit still, can you?") but knows there is a time limit. Reenie Eyles and her husband Bob live in a Federation bungalow in Sydney's south. Over a butter cake fresh from her oven, Reenie describes the call at 8.30pm one cold night in July that changed her life. "I'd had a few tests, including a CT scan, for recurring breathlessness and wheezing. Because my younger sister had open-heart surgery, I imagined mine was a heart problem." But when the doctor called, he delivered the startling news that her heart was fine "but you need to see a lung specialist urgently". Days later, she was diagnosed with malignant mesothelioma. Because the cancerous growth was confined to one spot on the left lung (usually it presents as multiple small tumours scattered across the lining of the lung), she was offered the option of radical surgery, a pleuropneumonectomy, which involved the removal of the diseased lung and some surrounding tissue. Ten weeks later, she's in recovery mode.

From 1986 until 1998, Bob worked as a sales person for a company that produced automotive parts, including gaskets, pistons and oil seals. His office was perched above the factory floor on a mezzanine level, but several times a day he'd go downstairs to check inventory while the work men were cutting the asbestos gaskets. "There were no dust masks or cloths; no precautions at all," offers Reenie. "Only in the last three or four years I was there," interjects Bob. On washing days Reenie would dutifully turn out the pockets of Bob's blue work trousers and shirt, give them a light shake and shove them into her top-loading washing machine. "We've gone over everything and that has to be how I contracted it," she says. (In the course of researching this story, I came across a startling number of women who developed mesothelioma from this kind of second-hand exposure.) Their medical bills have now topped $30,000, and the couple are tossing up whether to pursue legal action. But litigants have far more difficulty proving their cases when asbestos poisoning has occurred in the home. "The injustice of all this is that I've been unable to claim any compensation because I didn't work for Bob's company," complains Reenie. Member of the 'one-lung club', Anthony Biddle, who was exposed to asbestos while renovating a family farm in the 1970s. Credit:James Brickwood These are mighty dilemmas (whether to proceed with radical surgery, whether to risk the family home with costly legal action) that Anthony Biddle is grimly familiar with. After a lifetime of being fit, Biddle was in shock after being diagnosed with mesothelioma in 2011 at 61. "I agonised over having the surgery [a pleuropneumonectomy]," he says, sitting in the cluttered living room of his north shore apartment in Sydney. "Losing a lung was like losing a leg." So tormented was he that on the day of the operation at Strathfield Private Hospital, just as he was about to be wheeled into the theatre, he changed his mind. "I was convinced I'd die during the surgery. I kept thinking about my partner, Sue, and my son, David."

After receiving a second opinion in Melbourne, Biddle returned to Sydney, where he underwent surgery a month later. While he still can no longer cope with stairs, he's been able to continue leading a normal life, including a recent trip overseas. "We call ourselves the 'one-lung club'," says Biddle, of those who have had a similar operation. Biddle was able to trace his exposure back to asbestos on the family farm north of Goulburn, which he'd visit on weekends in the early 1970s, sanding back and painting the fibro walls and ceiling with an electric sander, sleeping on a camp bed amid all the dust. (Luckily, the farm is now owned by his brother and he was able to secure photographic evidence of the asbestos.) What has enabled Biddle to afford some quality of life is compensation from the company, formerly owned by Wunderlich, that produced the asbestos sheeting, through proceedings lodged with the Dust Diseases Tribunal of NSW (NSW is the only state with a separate tribunal for dust diseases). While a dollar value on a fatal illness may seem inhuman, particularly when someone only has months to live, mesothelioma sufferers will tell you it can mean being able to afford chemotherapy and palliative care without losing or mortgaging their house. Compensation lawyer Tanya Segelov: some of her clients' hearings take place at their bedside. Credit:Jessica Hromas

Lining one wall of compensation lawyer Tanya Segelov's office in a towering office block in Sydney's CBD are multiple shelves of ring-binders, filled with the affidavits and documents on her cases, almost all of them asbestos-related. Somewhere among these are the files for the doctor, nurse and intern from Sydney's Royal Prince Alfred Hospital, who successfully sued for damages after developing mesothelioma from the asbestos-sprayed steam pipes in service tunnels running under the hospital. Last year Segelov won the case of speech therapist Annabel Crouch, who worked at Royal North Shore Hospital, and used the tunnels many times a day. "Even Westmead Hospital, which was built in the late '70s, is full of asbestos, in the fire doors, ceilings and tunnels," she says. (Westmead closed its service tunnels in 2014.) In her 23-year legal career, she's witnessed asbestos knife through countless lives. Her first case as an intern was Vivian Olson, who as a baby was exposed to the deadly dust in the company town of Wittenoom in WA, immortalised in the 1990 Midnight Oil song Blue Sky Mining. But the case that really affected Segelov was that of Belinda Dunn, who at age 29 was shell-shocked to learn she had mesothelioma weeks after giving birth. "I sat with her for hours and interviewed most of her family members," says Segelov, folding her hands. "We finally traced it back to a garage with an asbestos roof, and even tracked down the builder, who recalled Belinda as a little girl jumping up and down on the cut pieces of asbestos roofing, singing that she was queen of the castle." A pause. "I was close to Belinda; we both had our second child at the same time and they used to play together. Her whole drive was to be there for the first five years of her son's life, and the youngest had turned five when she died. That was two years ago." Segelov compares asbestos manufacturers to cigarette companies that covered up the dangers of nicotine to protect their bottom line. Medical studies reporting the risks of asbestos date back to the 1920s, and internal memos between James Hardie executives in the 1960s reveal a high level of awareness ("Dust is dust and denial only stirs things up. Keep quiet," declared one.). Other companies such as CSR and Wunderlich were also involved in asbestos manufacture.

Another sore point: those who insist the dangers of asbestos have been overblown because they've been directly exposed themselves and not gone on to develop cancer. "Well, that's wonderful," says Segelov, "but mesothelioma isn't so different from other diseases: some unlucky people get it, others don't." The 46-year-old projects an air of unflappability that must serve her well in hearings, which in some cases take place at the bedside of dying patients. What really disgusts her are the company lawyers who try to drag out a case, knowing her client is dying. "Some come from central casting. They'll approach my client after a case and wish them all the best, to make themselves feel better – then get into their BMW and drive away." Tanya Segelov isn't the only lawyer who has made it their personal mission to represent the victims of asbestos. Queensland-based Sean Ryan became a compensation lawyer after watching his carpenter father Robert die from mesothelioma back in 2003 at the age of 58. "That moment when Dad sat me down to tell me he was dying from mesothelioma is still too raw and upsetting for me to recount," reflects Ryan. "Every case is tragic in its own way. Your clients have only months - and in some cases weeks - to live." Sean Ryan, director of VBR Lawyers. His father Robert died from mesothelioma at age 58. Credit:Paul Harris On a foggy Friday afternoon late last month, I catch a train to the Blue Mountains to meet one of the few long-term survivors of mesothelioma. Karen McCarroll contracted the disease from fibro dust in the travel agency where she worked in mid-1980s. The shopping centre underwent an extensive renovation, and she'd arrive each morning to find a thin film of dust covering her desk and floor, which she wiped and swept up. "They tore the whole shopping centre apart while we were there," she recalls. Her husband Warren noticed the first symptoms: "She was making a rattling, wheezing sound in her sleep."

Karen McCarroll is a very rare long-term survivor of mesothelioma, diagnosed more than 11 years ago. Credit:James Brickwood Diagnosed more than 11 years ago, McCarroll has refused any courses of chemotherapy or radiation. "I was told the growth in my lung was as hard as cement, that I had nine months to live," she says. For years McCarroll, who continued to have regular lung scans, baffled doctors, but over the past year or so the tumour has engulfed much of her left lung. That hasn't stopped her from spreading the word about the dangers of asbestos on her husband Warren's community radio program in the mountains. "That blasted dust," she says. "If only we had all known." National Asbestos Awareness Week runs from November 27. A summit will be held in Canberra from November 26.