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‘I’m the proof it can happen to you’: my life with mesothelioma

Posted on: 28/04/2017

Simon Clark was an electrical engineer who ran a successful contracting business, starting out, like many of his generation, as an apprentice. Some 35 years later, he experienced chest pains. This was the first sign he had of mesothelioma, a fatal cancer, which up until his diagnosis in hospital, he had never heard of.

“The pain, which started in the lower right hand side of my rib cage, increased over the next few months and spread across my chest and back. I became breathless and broke out into sweats,” Simon recalls today.

Despite several chest x-rays, bone scans, CT scans and biopsies, Simon’s local hospital wrote to his GP to say they couldn’t find anything wrong. By this time, he was unable to run his business, a firm employing a small, dedicated workforce who had been with him since its very start. Owing to his breathlessness and discomfort, he spent a month sleeping upright in a chair.

One day, after nine months of these distressing difficulties, things reached a crisis point and he was found collapsed on the floor by his wife, Zana. As she tells movingly in the video recently made of Simon’s story, published by the Construction Industry Training Board to raise awareness of asbestos dangers to workers: “I came home and he was on his hands and knees and you couldn’t hide the pain. And that was when he was taken into hospital and it was the paramedic who said, ‘have you worked with asbestos?’”

Asbestos is a category 1 carcinogen, which kills around 5,000 workers each year, according to HSE’s statistics. This is more than the number of people who are killed on roads.

Once, it was thought that ship and dockyard workers were the most vulnerable to historic exposures to asbestos. This is because asbestos was used in UK dockyards, where it was known as the ‘magic mineral’ for fire-proofing and insulation. At its peak, asbestos was imported at over 180,000 tons a year in the 60s into the UK. Coastal towns where it was offloaded in hessian sacks by workers, have also recorded higher than the national average of the disease in the past.

But recent research has proved it’s a bigger problem for a huge swathe of tradesmen roles. The first study to quantify the relationship between mesothelioma risk and lifetime occupation, by HSE and Cancer Research in 2009, found that ‘a significant’ number of occupations are associated with asbestos cancers. It found the risk of mesothelioma is one in 50 for electricians born in the 1940s who worked in their trade for more than 10 years before they were 30. Asbestos-related cancers kill 20 tradesmen each week.

Today, half a million non-domestic premises and around a million homes still contain asbestos. Asbestos-containing materials (ACMs) can be found on lagging on pipes and old boilers; asbestos cement in the form of roofing, water tanks and corrugated sheets; insulating boards; tiling, as the All-Party Parliamentary Group on Occupational Safety lists in its 2015 report, the Asbestos Crisis. If ACMs are disturbed, such as through refurbishment, or any property maintenance work, and if that person is unprotected, they are exposed to the real risk of contracting asbestos-related cancer later in life.

For Simon, none of this risk awareness or information about asbestos was part of his training. He explains that as a young, keen apprentice learning his trade in the late 70s he was sent into the heartlands of ACMs. “We got all the crappy jobs like cutting the insulation off pipework to fit earth straps, we would crawl in loft spaces full of insulation and service ducts, with piping covered in lagging,” he recalls with grim clarity. Here they would install and clip cables, cut and drill holes into walls. “Finally, at the end of each day we had to sweep up all of our mess, and everybody else’s rubbish, which caused enormous clouds of dust and fibre.”

The lethal dust that Simon describes was shockingly visible, but asbestos fibres themselves cannot be seen and they cannot be detected by smell. They are also toxic in just small amounts. The control limit set by HSE is 0.1 asbestos fibres per cubic centimetre of air (0.1 f/cm3). But this low-sounding measurement is still not a ‘safe’ level, according to HSE’s guidance on working with asbestos.

Asbestos is dangerous when it is disturbed or in poor condition, which causes the fibres to be released into the air. If they are breathed in, they can settle in the lungs and damage the pleura, the body’s delicate mechanism for breathing. The mesothelium is the lining, which also surrounds the heart, lungs and intestines. Fibres breathed in can emerge as mesothelioma, invading any of these areas, typically up to 40 years later. This is why it is such a frightening and forceful form of cancer.

After Simon’s collapse that fateful day four years ago, he was transferred to Leicester Glenfield hospital for a biopsy. The consultant told he and Zana the shocking news: he had mesothelioma. “Like most people, I had never heard of it,” he says.

“Straight away I was thinking, well people live with one lung and most cancers, if caught early enough, can be kept at bay or cured.” He was given a choice to have an operation, which had a 60% survival rate and hope to live for two years longer; chemo, which people can react differently to; or do nothing and expect to survive for three months.

He chose the six-hour operation. Surgeons removed as much of the tumour as they could, as well as the lining of his heart and oesophagus. Today, Simon is beating the odds and taking each day as it comes with his wife and two daughters supporting him. But life is hard.

“I cannot lift heavy objects and struggle to walk upstairs and inclines. Because my diaphragm is partly missing, even bending over I become breathless. I cannot enjoy the sports activities I used to, like cycling, walking, golf. Most of all it is so very frustrating and believe me, from my experience being breathless is horrible, horrible. Having cancer is a very lonely place to be,” he says.

His focus now is on putting right the wrongs that gave him cancer and, as well as speaking at conferences and working with the East Anglia Construction Group, on whose behalf he recently had the honour to receive an award from the House of Lords for outstanding contributions to safety, he has lent his story to a new training video.

The CITB film Asbestos and Construction: how to protect yourself is now incorporated into courses at several National Construction College campuses across the UK. Alison Rodgers, health and safety strategy manager at CITB, says it has resonated with young construction workers who empathise with his story. “We hope too that younger viewers will take away a clear message that is ‘protect yourself at work today to protect your health for tomorrow’.” The video is on YouTube and also has been played through health and safety groups like Working Well Together.

Simon is determined to help because he says asbestos are still being ignored: “There is still a gung-ho attitude — from workers that don’t think it’s going to happen to them; I’m the proof it can happen to you.” His mission is to get companies to help eradicate asbestos and other breathing-related diseases from workplaces.

“The only way this will happen is by removing the dangers, educating ourselves and our workforce,” is his heartfelt message.

Watch Simon’s story here

HSE asbestos guidance for tradesmen here

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