As a normal 22-year-old University of New Brunswick student in 2008, Matt Ralph’s life suddenly changed one day while he was taking a nap.
He had a seizure and woke up surrounded by paramedics preparing him to be taken to hospital.
Tests led to the diagnosis of a brain tumour — a malignant ganglioglioma — and surgery followed two weeks later in St. John’s. Ralph, from Grand Falls-Windsor, wanted to be treated in his home province.
“I thought it was just a setback,” said Ralph, now 33. “I think I was in shock, and I just tried to get back to my life as soon as possible.
“It was difficult, but I don’t think I processed it until I had a recurrence five years later.”
Even with the grim words from his doctors that, with his diagnosis, statistics show that only one in five survive more than five years, he kept thinking positively.
Yet, being a young adult, Ralph felt alone and isolated in trying to come to terms with his terminal illness.
Family and friends just didn’t “get it,” Ralph said. And he found there were few resources and professional supports available to him through the health-care system.
The only person in whom he did find comfort talking to was his grandmother, who died after battling breast cancer three months before his re-diagnosis in 2013.
It’s not since connecting with other young adults facing life-threatening illnesses that Ralph realized he wasn’t alone, and that they felt the same way he did. And by talking to each other, they’ve become their own support network.
Last week a new website “Living Out Loud” (livingoutloud.life) was launched, in which Ralph and others facing life-threatening illnesses tell their stories to help support teens and young adults all over the world with advanced metastatic cancer and other life-limiting illnesses.
The website is a partnership between the Canadian Virtual Hospice, young adults with advanced illness, Young Adult Cancer Canada and Team Shan. Funding was provided by the Canadian Partnership Against Cancer and the Thomas Sill Foundation in Winnipeg.
A number of health experts from Canada and the United States have also contributed content.
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Simone Stenekes, a clinical nurse specialist with Canadian Virtual Hospice and Living Out Loud project team member, said the project began because of the lack of information available for teens and young adults living with serious or life-threatening illnesses.
“The young adults who were part of this project were the ones who drove the entire project,” Stenekes said. “They talked about what was important to them, about what topics needed to be discussed.”
Stenekes noted the participants share deeply personal information and often humorous stories through video and text. They share their experiences of pursuing education and work, and the impact of their disease on sexuality and fertility, and on relationships with family, friends, partners and health-care providers, and discuss topics of raising children and confronting end of life.
“We wanted them to be able to share their stories and be brutally honest about what their life is really like living with the fact that they are also dying,” Stenekes said. “We really wanted to bring their stories, their experiences, forward so that others would not feel as alone in their illness experience and maybe not feel as frightened to maybe talk about advance-care planning, to talk about what it might be like to plan my funeral, what it is like to lose your fertility as part of your treatments — those sort of things that all kind of stop somebody in their tracks when they get ill.
“This is a place they can link to see they are not alone, that other people are going through this, and that pieces of another person’s story may be helpful to them.”
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Ralph said he feels extremely lucky to be a part of the project.
“I feel like it is giving back,” he said. “Having those connections has made my life a lot better.”
Ralph is currently working for an international jazz magazine and is preparing to pursue a master’s degree in theatre. He credits Living Out Loud with helping ease dealing with a life-threatening illness.
“My parents are in their 50s and 60s now and at those ages they are now starting to think about mortality, and things like that,” he said. “It seems to them to be a bit of a shock that they are just realizing that, ‘I’m going to die someday,’ and I am amused by that because I have had that in my mind since my 20s.”
Ralph said dealing with the stress and impact on his life from the illness is just as important as fighting the illness.
“The illness itself is out of your control, you put your life in the hands of health-care professionals,” he said. “You can’t do that with the rest of your life, your mental state and dealing with family and friends.
“It’s common and sad that some friends seem to disappear when you are going through this. Some friends and romantic partners simply aren’t able to deal with these types of issues. It’s too real for them to talk about and offer support.
“But I’d just like to say that all efforts and outreach, all arms extended, are appreciated and valuable to survivors. I strongly encourage everyone to make that little bit of effort to reach out and talk to anyone who is remotely close with you and simply ask how they are doing.
“I feel that my life as a cancer survivor has really shaped who I am and my identity. Along with all the frustrations and fears it has given me, it has also brought a lot of good to my life. I’m more appreciative of life on a day-to-day basis. I enjoy the small pleasures of life, like a cup of coffee or the arts.
“I’ve been able to interact with dozens or potentially hundreds of other people who I would never have met. They are completely different from me, have completely different life paths, but we all feel connected and unity, and it’s really an amazing feeling.”