Living with Mesothelioma: Claire Cowley Shares Her Husband’s Journey logo

In 2012, Paul Cowley was a working dad living a normal life. He lived in Ely, Cambridgeshire, with his wife Claire and their 20-month-old son, Ethan. Paul was just 34 years old, and seemed perfectly healthy and active. So when the doctors told him and Claire that he might have cancer, they couldn’t believe it. Learning he had pleural mesothelioma, the family was completely shocked and devastated.

“When we actually heard the diagnosis and that it was a terminal, incurable cancer, I think we all just went into autopilot,” Claire recently told the Mesothelioma Cancer Alliance (MCA). “Of course, we had a very young child at the time and he kept us going.”

Now, Paul has been surviving with mesothelioma for over 4 years. There are good days and bad days in regard to how well Paul feels, but the Cowley family doesn’t take a single one for granted. They are committed to raising awareness for mesothelioma and its known cause, asbestos.

The Dangers of Asbestos in Schools

Paul grew up in Ely and completed his schooling in the area. Although the Cowleys aren’t entirely sure just how Paul was exposed to asbestos, given his age at diagnosis, they believe it happened from exposure at school.

Asbestos was widely used in construction all over the globe because of its fire resistance and durability. Its health risks were realized as early as the 1920s, though it still took many years for countries to begin banning the toxin. Still today, about 70% of the world allows its use, including the United States.

The U.K. completely banned asbestos in 1999. But even with a ban, asbestos remains a threat in many schools and older buildings. While asbestos is technically not a health risk as long as its left intact, any damage to materials containing the mineral can cause the dangerous fibers to become airborne.

“We know that all the schools Paul attended as a child did and do still contain asbestos,” Claire explained.

After exposure, it can take anywhere from 20 – 50 years for symptoms to appear. When the fibers are inhaled, they can become lodged in the lining of the lungs. The body can’t break down the foreign toxin, and over time it irritates the lining and causes scarring. This irritation gradually leads to tumors that can develop into mesothelioma.

Secondhand exposure is also a serious risk, especially with certain occupations. Claire mentioned Paul’s father worked as a maintenance engineer and could have unknowingly brought asbestos home on his clothing.

Regardless of how the exposure occurred, the Cowleys never really thought about how this mineral could turn their lives upside down.

An Unexpected Diagnosis

“Before Paul was diagnosed I’m not sure I had even heard of mesothelioma,” Claire said. “I am sure I must have known that asbestos was dangerous, but I suppose until it happens to someone you know or you are made aware of it, you never think it will happen to you.”

Paul went to the doctor for a completely different appointment. The family never even suspected he had cancer, let alone a rare cancer. After the initial biopsy, Paul was diagnosed with pleural mesothelioma, meaning the tumors grew in the lining of his lungs.

Mesothelioma has different types depending on the location in the body, but pleural is the most common. The types of mesothelioma can be broken down further by cell type. The Cowleys learned Paul had epithelioid, the most common cell type. About 70% of pleural mesothelioma cases are epithelioid, so it is the most studied cell and has a better prognosis.

Although Paul’s type of mesothelioma has a better prognosis, the life expectancy of mesothelioma patients is generally very short. On average, patients are given just 12 – 21 months to live. “He felt like his life was going to end there and that he wouldn’t see the next day, week, etc.,” Claire said.

After receiving his diagnosis, Paul underwent some standard treatments for mesothelioma . He had two surgeries and six rounds of chemotherapy in the six month period following his diagnosis. “Those six months were the hardest six months of his life,” Claire told MCA. “But I believe it has made him stronger and more resilient and able to cope with whatever else this disease has to throw at him.”

Following his treatment, Paul’s disease has remained stable with no evidence of progression. Though he isn’t cured, the family is relieved he’s been able to beat the odds so far and watch his now 6-year-old son Ethan grow. Paul no longer works and Claire stays at home with her family as well, taking on the role of his caregiver.

“Paul worked for two years after diagnosis, but it became too much as he suffers with severe fatigue,” Claire explained. “He also felt that he wanted to be able to do what he wanted in the times he feels able and well enough, before it is too late.”

Advocating for an Asbestos Ban

The Cowleys are very passionate about raising awareness for mesothelioma and the dangers of asbestos. They participate in fundraisers for Mesothelioma UK and appear in local newspaper articles and television programs to get their story out. Claire also writes a blog documenting their journey with mesothelioma.

Claire hopes to continue raising awareness in other ways in the future. While Claire is thankful asbestos is banned in the UK, she worries about its use in the United States. She wants to help support organizations fighting for a ban however she can.

“This is scary enough for me knowing that children in the UK who attend schools built before the year 2000 could and probably are being exposed on a daily basis,” Claire told MCA. “It really scares me that asbestos is not banned in the United States. This is really something that needs to be sorted as soon as possible. While asbestos is still being used, there will always be people diagnosed with mesothelioma.”

The Cowleys hope their story can help affect change and better prevent exposure to asbestos. Claire wants everyone to realize exposure can happen to anyone at any age as long as the toxin is still around.

“Unless asbestos is banned in the US and removed from all schools and buildings in the UK, mesothelioma will never be a thing of the past” Claire insisted. “It can affect anyone.”