Alive and glittering: lessons from 12 years living with terminal cancer

Newquay Harbor, Cornwall. Winter. There are no tourists. Dark skies above. Ocean pounding. A small fleet of weather-beaten trawlers, all tied to their moorings. And there, going up and down in the shallow water, a lone swimmer. Immersed, unconscious, content.

Kris Hallenga’s morning baths started a few years ago. She defies the cold regardless of the weather. It never gets easier, that first step. But once it’s done, the endorphins and adrenaline kick in, and you find the comfort you seek.

“There is something about the cold. It’s weird, but I love that feeling of being bold and going for it. The whole experience: it makes me feel much more awake, much more alive, ”she enthuses.

‘Alive’ is not, in Hallenga’s case, a throwaway word. At the age of 23, he was diagnosed with stage four cancer (“there is no stage five,” he notes). Doctors initially gave him two and a half years to live. That was in 2009. She attributes her longevity to excellent medical care, a mix of new and not-so-new medications, love from friends and family, and most importantly, a constant passion for life.

Much of that passion over the past decade and beyond has been turned into CoppaFeel!, a cancer awareness charity that Hallenga created just three months after her diagnosis. Their mission is simple: talk boobs. Or, more accurately, lumpy breasts. Schools, music festivals, social media platforms; CoppaFeel! Take your message to young people wherever they are, however you can.

For Hallenga, there is a permanent “what if?” behind their extraordinary efforts. Before his diagnosis, he knew something was wrong, but decided to ignore it. Young people don’t get cancer, right? A late trip to her GP suggested nothing to worry about.

Then eight months later, her nipples started bleeding. At that stage, the cancer had spread to her spine and liver, and then progressed to her brain.

The same eternal question haunts her. What if I had checked my breasts earlier? Would breast cancer be a thing of the past for me? “The answer, of course, is unknowable. Possibly, possibly not. She will never know, but she is doomed if others are going to be left wondering the same thing.

Join the 17-member CoppaFeel! team: young, energetic, breast-obsessed activists. Over the years, they have thrown themselves into everything from flash mobs and publicity stunts (they once projected cancer statistics in the headlines to the Houses of Parliament) to teacher training and policy advocacy.

Behind their serious message, there is a refreshing irreverence in much of what they do. “Spreading the love for boobs” is how Hallenga sums up his strategy. Compared to the generally sober world of medical charities, his upbeat tone helps establish CoppaFeel! Besides. It also resonates with your target audience, who, like many staff members, are primarily young adults.

“As young people ourselves, we knew that anything that scared them would put them off. We also knew the value of talking to them at a level they understood, ”says Hallenga, reflecting on the initial thinking behind the charity’s approach.

Looking back is something you’ve been doing more and more over the last year. Without wasting a minute, she took the opportunity to be locked up to write a book. Its publisher presents it as a memoir; Hallenga prefers the “eulogy”. The reflective account of her life with cancer will come out this summer with the tongue-in-cheek title, Glittering a Turd. (Your Instagram identifier is @howtoglitteraturd).

The writing process has turned out to be cathartic. On the one hand, it has given Hallenga the space to process the ups and downs of her cancer journey. Not someone who blows his own trumpet, he quickly skips his accomplishments: the awards, the honorary doctorate, the one-hour BBC documentary, the recent inclusion of cancer awareness in the UK school curriculum.

Instead, it’s the people you met along the way that come to mind. Like her close friend who recently had a malignant lump removed from her breast. She would have had her breasts checked if she hadn’t had a CoppaFeel! sticker in your shower reminding you? It’s an unnecessary hypothesis, because he did it and now he doesn’t have cancer. The same could be said of thousands more.

I hope I have done something extraordinary with my life even without cancer.

Hallenga adopts an equally modest tone when speaking of bass. His own illness, he hardly mentions. Nothing about full-body scans every three months, ongoing oral chemotherapy, almost constant pain, periodic seizures.

Even the brain tumor that required emergency surgery that he developed two years ago is quickly ruled out. Thanks to “very clever targeted gamma knife radiation therapy,” he is now tame.

Hallenga’s focus, again, falls on others. Those whom he loves and lost, especially. Her work puts her in contact with people with cancer all the time, many of whom become close friends. Every time cancer steals them, she promises herself that she will never be friends with anyone with the disease again.

“I always say, ‘Okay, I’m done. Never more.’ But when it comes to choosing your friends or the people you fall in love with, who really has a choice in that? “

Whatever the ups and downs, now at 35, she testifies to being happy. Happy to have survived so long; happy to have people around her whom she loves and who love her (her bond with her twin sister and confidant, Maren, is particularly strong); happy with the simple things in life, like reading, writing and, yes, even swimming in the frozen Atlantic.

“It took me a lot to get here, but I’m happy, in a rather simplistic way that I think is really achievable for everyone,” he reflects.

Shining a Turd has certainly helped in this regard, he admits. Among the outstanding truths that struck her during writing are the positive aspects that cancer presents. Despite her cruel injustice, cancer gave her life a purpose, a reason to get up every morning. Awareness about this disease, strangely and unexpectedly, has offered him a lifeline.

“On the outside, it seems like I’m helping people, but as I write, I realized that they have actually been helping me deal with cancer. I think writing the book is the first time that I really admit it. “

I want us to find our superpowers, our strengths, our ‘greatness’ without terminal illness.

His second reveal is even more remarkable. And it’s this: “I’m cool.” The claim is not a boast (although she immediately apologizes for sounding “a bit silly”). What’s remarkable, though, is realizing that it’s not the metaphorical shit that made it great. Her ‘greatness’, for lack of a better term, was always within her.

“What I mean is that I hope there was something inside me that would have prompted me to create something special and do something extraordinary with my life even without cancer. It shouldn’t take cancer to do great shit, I guess. “

None of this stops the cloud of death that lurks. More than a decade of living with cancer has helped Hallenga come to terms with its presence. On the one hand, death is a universal constant; The clock of life just ticks a little tighter for her.

Second, it is not here yet. She has a message saved on her phone from a now deceased friend. “You still have a long way to go,” it reads. “It’s silly, but I don’t want to feel like I’ve let her down,” says Hallenga. “We are all going to die. But one thing is certain: I am not dead yet.”

Tomorrow, next week, next month, they can take care of themselves. For Kris Hallenga, now, today, is to live, dream and be.

Looking up at the weak winter sun, which has just broken through the clouds, Hallenga reflects that cancer has helped her “be encouraged from the sidelines,” “to be allowed to be me.”

“We are more proud of the people who have made it through pain and suffering than we are of those who are simply unapologetic, proud, bright, wise and happy,” he says. “So, I want us to find our superpowers, our strengths, our ‘greatness’ without terminal illness. I am giving everyone permission to live fully cancer free. No snot. Just shine. “

Lead Image: James Bowden