Edinburgh woman launches campaign to raise awareness of killer disease

Julie Roberts in her dad's seat at Easter Road. Picture: Julie Bull

Julie Roberts in her dad's seat at Easter Road. Picture: Julie Bull

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IT took just eight months. Thirty-two short weeks for Gordon Roberts’ lungs to slowly stop their automatic gentle rise and fall; 270 days from diagnosis for the retired joiner to stop breathing.

The illness which killed him had taken root long before then – decades past, when as a joiner working for one of Edinburgh’s biggest house building firms, tiny, deadly fibres of asbestos were innocently inhaled, embedding themselves in the lining of his lungs and slowly, surely, poisoning his body.

It was only after retirement that a shortness of breath became pronounced, a tiredness that had little to do with physical activity laid him flat. A secret visit to his GP, a gamut of tests done without his family’s knowledge brought the answer: stage three mesothelioma, a cancer of the lungs.

His devastated wife mentioned it to her brother Jim Hamilton – he’d been a plumber in the city’s building trade for years. Suddenly the pain in his back which he’d written off as a golf swing problem became more urgent. The tests were done. They, like Gordon’s, were positive.

In February last year 68-year-old Jim died. Then on April 5 – Easter Sunday – 69-year-old Gordon, a grandad and lifelong Hibs fan, passed away at St Columba’s Hospice.

“He basically suffocated to death,” says his daughter Julie. “It was awful to see him like that. It was awful that he’d seen uncle Jim die and knew what would happen to him… but he was so brave, he never complained about it once.

“He had time to think about us all – wrote letters for us to open afterwards. He even wrote a speech to be read if I ever get married,” she smiles, her eye filling with tears. “Those months from diagnosis were precious to us all, but we do feel robbed of the times we now won’t have with him. I just wish he’d been diagnosed earlier.”

Mesothelioma is a cancer of the cells of the lung that has had little publicity and yet it is one which kills 2500 people every year, usually within a year of diagnosis. The number of people affected is expected to rise sharply over the coming years as the disease begins to make itself apparent in the many men who worked with asbestos in manufacturing or the building trade during the 1970s and 1980s.

In the Lothians, councils have paid out almost £700,000 to employees affected by asbestos-related diseases like mesothelioma in the last five years because of historical exposure. But Julie Roberts believes that mesothelioma needs much more exposure. The 37-year-old is determined to have it added to the Scottish Government’s cancer strategy, where there is currently no mention of the disease.

“As a family we’d never heard of it before – nobody seems to have. But thousands are diagnosed every year and that number will rise dramatically. The problem is that there are no symptoms before it’s too late to do much about it. If people were more aware of the disease – especially those who worked with asbestos – then they could look for symptoms much earlier.”

She adds: “I do think the government could start raising awareness – letting people over 50 perhaps know that if they worked in certain trades they could be at risk and to keep an eye on their health.”

Julie says that her dad had never smoked and was generally fit and never let himself be idle. “He was a glass half full man,” she says. “Always had something to do, somewhere to go. He loved his football, friends and family. Probably in that order,” she laughs.

“I would go to watch Hibs with my dad from the age of 13. It was our thing. About a year after he died I heard about the GameChanger scheme Hibs had launched and I wrote to Leann [Dempster, the club’s CEO] and told her dad’s story.

“I really believe that football clubs can help with men’s health – they’ve a captive market every weekend. I think what Hibs are doing is ground-breaking.”

GameChanger is a partnership between Hibs and NHS Lothian to tackle physical and mental health problems among the club’s fans; the initiative aims to deliver better health for the club’s supporters and community.

“Leann wrote back to me and told me about losing her dad when he was in his 50s,” says Julie, who works for a marketing agency. “Then I was asked by the club if I would make a video for them about dad, our life with Hibs, and about what happened to him. It’s really taken off and been viewed loads of times. My hope is that it raises awareness of mesothelioma, but more needs to be done.”

To that end she’s won the support of Scottish Labour leader – and Hibs fan – Kezia Dugdale, who has written to health secretary Shona Robison asking what plans the government has to tackle mesothelioma.Julie is determined to raise awareness of the illness - so much so that she’s prepared to launch a crowdfunding campaign to get leaflets printed and handed out outside football grounds.

“I’ve been back to watch Hibs since he died. The first time I’d been in the ticket office because he always bought them. I’ve such precious memories of my dad but I should have more. I’ve been robbed of those because of a disease we knew nothing about. I don’t want others to go through that, people have to know about mesothelioma.”

Follow Julie’s campaign at thehoneycombconjecture.net