Last week we shared Mavis Nye’s story as she fights pleural mesothelioma. In that article we shared the humor and love of life that has kept Mavis going strong. However, she also has a fighting spirit and works tirelessly to spread the word of the dangers of asbestos. In Part II of Mavis’s story, we talk about her efforts to educate the public.
Mavis Nye said that sometimes it feels like she lives her life in three month blocks. That is the length of time between each of her CT scans where her oncologist can determine whether her treatment is effective. Prior scans showed she was keeping the cancer at bay. However, her last scan showed some regrowth of the tumors.
“I have had so many scans and tests that I know that mesothelioma is the only thing wrong with me,” Mavis told Mesothelioma Help in a recent e-mail interview. If not for the cancer, “I could have lived to 99 like my mother did. That makes me so sad.”
It is this sadness and frustration that leads Mavis to do all she can to let everyone know that asbestos is extremely dangerous and to fight to shield future generations from this “nasty cancer” — a cancer she developed by inhaling microscopic asbestos fibers that clung to her husband Ray’s clothes that he brought home from his work at the dockyard.
The Prolific Writer
Within months after Mavis’s diagnosis she began to connect with other patients who were also struggling to make sense of the disease. Through social media, Mavis found a support group of mesothelioma warriors who had been through treatments and had joined forces to educate the public about asbestos and this terrible cancer. Via Twitter, @GrandmaMavis slowly began to post articles about newly discovered asbestos hazards, safety violations and medical breakthroughs. On Facebook she “liked” articles sent by others, sent affirming thoughts to patients struggling through treatments and the side effects, and shared information about clinical trials and upcoming medical conferences.
During this time Mavis became more knowledgeable about the disease, and she became more frustrated. She was determined to capture her story, as it unfolded, and what she has learned along the way. She became a prolific writer and she and Ray have made virtually every step of her diagnosis and care available to the public.
Mavis and Ray both maintain a daily blog. They leave their readers both laughing and crying as they follow their ups and downs, struggles, and highlights of their days. Mavis’s trademark humor and Ray’s adventures as a caregiver, and sometime patient himself, present a clear picture of how mesothelioma affects more than just the patient.
The two also created and manage OneStop Mesothelioma, a website that contains information they have gathered about asbestos, mesothelioma, medical resources, and even heart health. (Ray suffered a heart attack this year, and he offers readers information about angioplasty and stents.)
In 2010, Mavis published her book, “Meso Warrior” to share her story and to “give other mesothelioma sufferers the insight that it’s not all doom and gloom.” All proceeds of her book go to Mesothelioma UK to help raise funds for research.
My Name is Mavis and I Have Mesothelioma
The first time Mavis spoke publicly about her story and about the disease was at the 2010 Mesothelioma UK Conference in London. There, she was able to tell her story of her mesothelioma diagnosis and treatment.
“I was nervous in case I made a mistake,” said Mavis, “but I got through it and I was surprised by the clapping.”
Once Mavis got started there was no slowing her down. She has been interviewed by national magazines, including Yours, a UK women’s magazine, and by local newspapers, local radio and TV stations, national papers, and international organizations. She has spoken at many more conferences, and starred in a safety video by the British Lung Foundation. She has even taken her fight to the British Parliament.
Mavis has also been awarded for her efforts. Among her honors is the 2013 Asbestos Disease Awareness Organization’s Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families.
Her proudest moment was when she was awarded the 2013 Independent Asbestos Training Providers’ Meso Warrior award. Mavis spoke for just a few minutes when she accepted the award, but her heartfelt words about her journey earned her a standing ovation, and left the room in tears. It was having Ray, her son, Terry and his wife, Nicky, in the audience that moved Mavis the most.
Now, one of Mavis’s favorite and most rewarding advocacy efforts is that of a patient representative at the Cancer Network in East Kent. As a multi-year survivor, Mavis has been called on to discuss mesothelioma treatments available, or soon to be available to the community. Others in the group include doctors, nurses, and pharmaceutical representatives.
“I have to fight for mesothelioma to be heard, as they discuss other cancers,” said Mavis. “At the Lung Disease Orientated Group (Lung Dog) I have to keep asking about clinical trials as there are so many for lung cancer, but our cancer is not really lung cancer as such it is the cancer of the pleura that cover the lung.”
Mavis knows there is no cure for mesothelioma, and she believes there may never be, but through her effort to support and promote the implementation of improvements in cancer care at Kent, she hopes to make a difference for other patients.
“We all hope there will be a wonder drug come out and save us like a knight on a white stallion,” Mavis wrote in a recent blog entry.