News

Living with Mesothelioma

Warren, a resident of the Upper Hunter Valley in NSW, shares his journey living with mesothelioma. His wife, Christine, a recently retired primary school teacher, and their two university-enrolled children provide unwavering support. Despite losing one lung, Warren maintains his independence, cares for himself, and even enjoys a round of golf.

Warren’s career began as an apprentice fitter machinist in 1979, where he was exposed to asbestos in power stations and his workplace. He recalls a lack of education about asbestos at the time. After completing his apprenticeship, Warren spent the rest of his career working in coal mines and on his family’s dairy farm.

One day in June 2018, feeling unwell after working at the coal mine and the farm, Warren visited a doctor. A chest examination and X-ray revealed a collapsed left lung and fluid build-up. He was subsequently transported to Newcastle Private Hospital for surgery. The medical procedures included draining the fluid and a pleurodesis to prevent fluid reaccumulating in the pleural space. His lung was successfully re-expanded, and he felt well after the surgery.

However, this is how Warren discovered he had mesothelioma. “That was the start of it for me; I had no idea,” he recalls.

Warren was admitted to the hospital in 2018 while overseeing projects in the local coal mines. Due to his illness, he had to step down from his work. Many of his colleagues and managers reached out to offer support. While working in the coal mines, Warren underwent regular lung screenings. However, as he transitioned to contracting and working for himself, the frequency of these screenings decreased.

Warren connected with Professor Brian McCaughan, a cardiothoracic surgeon specialising in cancer treatments in Sydney. Professor McCaughan, a pioneer in this field, discussed the option of extra pleural pneumonectomy (EPP) surgery to remove the diseased lung. Warren decided to wait until his daughter returned from an overseas exchange before undergoing the complex surgery, which requires extensive preparation and testing. In the meantime, Warren underwent chemotherapy and made financial arrangements with the help of his legal team.

In 2019, with his daughter back home, Warren underwent the EPP surgery. “I was told in 2018 that with chemotherapy I would have 18 months. It’s been over 6 years and I’m still here,” he says.

Around this time, Warren was introduced to the Support Nurses at ADDRI. He soon joined an ADDRI support group for individuals with malignant mesothelioma and their families. Warren found solace and camaraderie in these groups, connecting with others who shared similar experiences. ADDRI’s experts also provided valuable information and resources, helping Warren navigate his diagnosis and treatment options.

Along the way, Warren has had some setbacks – a few recurrences of mesothelioma which involved more surgery, and then surgery to remove a brain tumour. He now comes to Sydney every few weeks to attend appointments and receive his immunotherapy.

Warren and his wife continue to attend the ADDRI support group, both online and in person in Sydney.

“Through all this, Jocelyn, Pam, Carmel and the team at ADDRI have been amazing support for us. They are so important to my wife and family. They’ve been the common denominator of support throughout my experience. They’re all very special”.