The MCA BlogConnecting with others one story at a time
Charlotte Hughes and her siblings recall a wonderful childhood in Rayleigh, England. Their mother Claire worked from home making realistic dolls, so she could also be a stay-at-home mom and spend time with her children. But when Charlotte was just 20 years old, the family learned the most devastating news: Claire had peritoneal mesothelioma.
Asbestos has been banned in the United Kingdom since 1999, but even with a ban in place there are still around 2,500 mesothelioma diagnoses in England each year. Mesothelioma develops slowly over many years, meaning many citizens exposed even 50 years ago may still be diagnosed for years to come. Even with a ban, old uses of asbestos remain in thousands of buildings and homes, putting even more at risk of exposure.
“It was gutting to think that she would have been between the ages of 2 and 12 when she was exposed, and she was but an innocent child,” Charlotte recently told the Mesothelioma Cancer Alliance, “the same age as my little sister when potentially she contracted this disease, and that we had lived a life of not knowing that this was slowly taking her away from us.”
The Horrible Diagnosis
Claire was 41 years old when the family first learned she had cancer. Because of how mesothelioma develops and begins showing nonspecific symptoms, it can be difficult to diagnose the rare cancer accurately. Regardless of the type of mesothelioma, it is often confused for even common illnesses, like the flu, or other types of cancer initially.
For the Hughes, the family initially believed Claire had ovarian cancer and peritoneal cancer. It wasn’t until four months later that she was officially diagnosed with peritoneal mesothelioma, which develops in the abdominal cavity.
“Of course the whole experience of being diagnosed with cancer is hard enough, along with being misdiagnosed was just terrible for her and all of us,” Charlotte recalled. “She was always so brave though.”
Upon learning her official diagnosis, the family was in shock and wondering how this could have happened. “None of us could really get our heads around how a 42-year-old woman was exposed to asbestos, bearing in mind the time it takes for symptoms to show after exposure, when it was banned in the UK in 1999,” Charlotte continued. “After learning about the disease, I was so angry that this substance was continued being used after the discovery of the danger of asbestos became apparent.”
As the family began to research more about asbestos and mesothelioma, they began to realize the awful truth. Mesothelioma has no cure and a notably poor prognosis. Given the difficulty to diagnose the disease early, it is often not diagnosed until a later stage, which can also limit the types of curative treatments. Many patients only have palliative treatment options by the time they are properly diagnosed.
Unfortunately, Claire also faced limited treatment options and a poor prognosis. “She knew that mesothelioma would be the disease to take her life, but she truly did not believe it would be 2 months after diagnosis,” Charlotte recalled.
Dedicated to Raising Awareness
After her mother’s devastating passing, Charlotte decided to dedicate her efforts to raising awareness around asbestos and mesothelioma to help prevent other families suffering like theirs. She realized her lack of knowledge around the toxin and the diseases it causes, means many other young adults also probably know nothing about it. She writes about the disease and her family’s personal experience on her blog to help educate others, and hopes to get involved in other awareness efforts in the future.
“If one person from my blog learns what mesothelioma is then I’m helping already,” Charlotte said. “I plan to do so much more to raise awareness in the future, but I am only 1 year on without my mum, so small steps; but my goal is that one day, mesothelioma will be as well-known as other cancers and there will be money for research, and maybe somewhere way down the line, there will eventually be some life prolonging or even curing treatment available.”
Charlotte also wants to help be an emotional support for anyone else who faces mesothelioma or other similarly devastating diagnoses. Having a support system and knowing you don’t have to face the disease alone is an important aspect of the battle.
“I also hope to help other people affected by this disease, either by going through it or by standing beside a loved one going through it, by bringing inspiration and comfort to know that you aren’t on your own in this horrific journey,” Charlotte said. “I have felt so incredibly down at times in the past year without my mum. She was and will continue to be my hero and my inspiration. It's a scary world to adapt to, it hurts and it’s not fair.”
But through her blog and finding her support system, Charlotte just wants others to know they’re not alone. She continues, “Reach out to me. Let’s talk, let’s share, let’s comfort one another and learn new things about the disease. Let's talk about your loved one and let’s talk about my mum. I just want people to know that you don’t go through this alone.”