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

Newquay harbour, Cornwall. Winter. No tourists. Skies dark overhead. Ocean pounding. A small fleet of weather-beaten trawlers, all fastened tight to their moorings. And, there, bobbing up and down in the shallows, a lone swimmer. Immersed, oblivious, content.

Kris Hallenga’s morning dips began a few years ago. She braves the cold whatever the weather. It never gets any easier, that first step. But, once made, the endorphins and adrenaline start kicking in, and she finds the solace she seeks.

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

‘Alive’ is, in Hallenga’s case, no throwaway word. At the age of 23, she was diagnosed with stage four cancer (“there is no stage five”, she notes). The doctors initially gave her two and-a-half years to live. That was in 2009. She credits her longevity to excellent medical care, a concoction of new and not-so-new drugs, the love of friends and family, and, most importantly, an abiding passion for life.

Much of that passion over the last decade and more, she has poured into CoppaFeel!, a cancer awareness charity that Hallenga set up just three months after her diagnosis. Her mission is simple: to talk boobs. Or, more accurately, boobs with lumps. Schools, music festivals, social media platforms; CoppaFeel! takes its message to young people wherever they are, however it can.

For Hallenga, there’s an abiding “what if?” behind her extraordinary efforts. Prior to her diagnosis, she knew something wasn’t right, but chose to ignore it. Young people don’t get cancer, right? A belated trip to her GP suggested nothing to worry about.

Then, eight months later, her nipples began to bleed. By that stage, the cancer had spread to her spine and liver, later progressing to her brain.

The same perennial question dogs her. “What if I had checked my boobs sooner; 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’s damned if others are going to be left asking themselves the same.

Enter the 17-strong CoppaFeel! team: youthful, energetic, breast obsessed campaigners. Over the years, they have thrown themselves into everything from flashmobs and publicity stunts (they once projected headline cancer stats on to the Houses of Parliament) through to teacher training and policy advocacy.

Behind their serious message, there’s a refreshing irreverence to much of what they do. “Spreading the boob love,” is how Hallenga sums up their strategy. Compared to the usually sober world of medical charities, their upbeat tone helps to set CoppaFeel! apart. It also resonates with their target audience, who, like many of the staff, are primarily young adults.

“As young people ourselves, we knew that they were going to be put off by anything that scared them. We also knew the value of speaking to them on a level they understand,” says Hallenga, reflecting on the initial thinking behind the charity’s approach.

Looking back is something she has been doing increasingly over the last year. Not one to waste a minute, she took the opportunity of being locked down to write a book. Her publisher pitches it as a memoir; Hallenga prefers ‘eulogy’. The reflection-rich account of her life with cancer is due out this summer with the characteristically tongue-in-cheek title, Glittering a Turd. (Her Instagram handle is @howtoglitteraturd).

The writing process has proved cathartic. For one, it’s given Hallenga the space to process the highs and lows of her cancer journey. Not one to blow her own trumpet, she skips quickly over her achievements: the awards, the honorary doctorate, the hour-long BBC documentary, the recent inclusion of cancer awareness on the UK school curriculum.

Instead, it’s the people she’s met along the way who jump to mind. Like her close friend who recently had a malignant lump removed from her breast. Would she have checked her breasts if she didn’t have a CoppaFeel! sticker in her shower reminding her? It’s an unnecessary hypothetical, because she did and now she’s cancer-free. The same could be said of thousands more people.

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

Hallenga strikes a similarly self-effacing tone when talking of the lows. Her own illness, she barely mentions. Nothing about the full body scans every three months, the ongoing oral chemotherapy, the near constant pain, the periodic crises.

Even the brain tumour requiring emergency surgery she developed two years ago is quickly dismissed. Thanks to “some very clever targeted gamma knife radiotherapy”, it’s now tamed.

Hallenga’s focus, again, falls on others. Those she’s loved and lost, especially. Her work brings her into contact with people with cancer all the time, many of whom become close friends. Every time cancer steals them from her, she promises herself she won’t befriend anyone with the illness again.

“I always say: ‘Right, I’m done. Never again.’ But when it comes to choosing your friends or the people that you fall in love with, who ever really gets a choice in that?”

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

“It’s taken a lot for me to get here, but I’m happy – in a pretty simplistic way that I think is really achievable for everyone,” she reflects.

Glittering a Turd has certainly helped in this respect, she admits. Among the salient truths to have struck her during writing are the positives presented by cancer. For all its cruel injustice, cancer brought purpose to her life, a reason to get up every morning. Raising awareness of this disease has, weirdly and unexpectedly, offered her a lifeline.

“On the outside, it looks like I’m helping people, but, while writing, I’ve realised that they’ve actually been helping me deal with cancer. I think writing the book is the first time that I’ve really admitted that to myself.”

I want us to find our superpowers, our strengths, our ‘big-ness’ without a terminal illness

Her second revelation is more remarkable still. And it’s this: “I’m great”. The assertion is not a boast, (although she immediately apologises for sounding “a bit of a knob”). Yet the remarkable bit is coming to see that it isn’t the metaphorical turd that made her great. Her ‘greatness’, for want of a better term, was always within her.

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

None of this stops the cloud of death lurking. More than a decade of living with cancer has helped Hallenga come to terms with its presence. For one, death is a universal constant; life’s clock just ticks that bit louder for her.

Second, it’s not here yet. She has a message saved on her phone from a now-departed friend. ‘You’ve got a long way to go yet,’ it reads. “It’s silly, but I don’t want to feel I’ve let her down,” Hallenga says. “We are all going to die. But there’s one thing for sure: I’m not dead yet.”

Tomorrow, next week, next month, these can look after themselves. For Kris Hallenga, now, today, is for living, dreaming and for being.

Glancing towards the weak winter sun, which has just broken through the clouds, Hallenga reflects that cancer has helped her to be “cheered from the sidelines”, “to be allowed to be me”.

“We’re more proud of people who’ve achieved through pain and suffering than those who are just being unapologetically loud and proud and brilliant and wise and happy,” she says. “So, I want us to find our superpowers, our strengths, our ‘big-ness’ without a terminal illness. I am giving everyone permission to exist fully without cancer. Without turds. Just glitter.”

Main image: James Bowden