How CoppaFeel! Founder Kris Hallenga Is Changing The Face Of Breast Cancer To Include Young Women, Too

22/10/2015 15:57 | Updated 23 October 2015
Kris Hallenga in 2014

"I hate the word 'breasts'," laughs Kris Hallenga, rolling her eyes. "It just sounds so clinical. They're just 'boobs' really, aren't they?"

As a woman who has spent the last six-and-a-half years living with terminal breast cancer and subsequently set up the award-winning charity CoppaFeel!, it's a word she has given a lot of thought to.

Her charity is run by young women, for young women, and aims, through its straight-talking but light-hearted approach, to raise awareness around breast cancer and show it isn't just an older women's disease.

This is something that Kris found out the hard way, when she was diagnosed with breast cancer aged just 23. Now aged 29, the cancer has spread to her spine, pelvis, hips and liver. Her cancer is in stage four and, as she often says matter-of-factly, "there is no stage five".

Kris first noticed a lump on her breast when she was 22, but it was dismissed by her GP who said that, at her age, it was probably just hormones. Six months later she returned to the GP with the same issue, only to be sent away again and told to come off her pill.

It was only after Kris' mum, Jane, told her to demand a referral that she was eventually diagnosed with secondary breast cancer.

And so began months of gruelling chemotherapy and radiotherapy, signalling the end of her carefree twenty-something life. But it was while in hospital, growing increasingly frustrated by her ridiculous situation, that Kris decided to turn her story into something positive. And so she set up CoppaFeel! with her twin sister, Maren.

One of the first things people usually say about her is that she "doesn’t look like she has cancer". With a short blonde pixie crop, dazzling blue eyes and brown leather jacket over a gym kit, she is a far cry from the typical image of what a cancer patient looks like - but therein lies the problem.

“I’m tired of being told I look well," she says. "Am I supposed to look sick too?

"I'm just trying to change the face of breast cancer."

Part of the problem, she believes, is the language we use around cancer. Kris refuses to use the word "fight" and "battle" to describe her cancer experience, and winces at being described as a "victim" or "sufferer".

"I don’t using those terms because they are simply not true," she explains. "I’m not suffering or fighting right now.

"I'm simply living with cancer. I'm just living."

Kris believes that employing such negative terms simply creates fear around the disease. In turn, that means people won't take a proactive, positive approach to treatment and prevention.

CoppaFeel! hopes to change that through bold campaigns that encourage behavioural change so that more women "check their boobs", to use the charity's favourite turn of phrase.

SEE ALSO:

Breast Cancer Awareness: Do You Know What Normal Feels Like?

Naked Breasts Appear In Shopping Centres For The First Time Thanks To CoppaFeel!

Joanna Forest, Boobette For Breast Cancer Charity CoppaFeel!

Since it began in 2009, the charity has grown to employ eight full-time staff and a team of volunteer ambassadors, known as 'Boobettes', who tour the country - often wearing large boob costumes - visiting universities, schools and music festivals to encourage women to get into the habit of checking their breasts regularly.

Through its innovative campaigns such as 'Check 'em Tuesday' with The Sun's Page 3 or 'bra hijack' that calls on lingerie companies to sew reminder labels into garments, the charity has picked up numerous awards. Kris herself has received a Pride of Britain award and, most recently, been named Outstanding Young Campaigner at Woman Of The Year awards.

But Kris says there is no greater achievement than knowing the charity has helped to save lives.

The first "eureka moment" came in 2010, when Boob HQ (as the charity headquarters is affectionately known) received an email from a young woman named Jenny, who was diagnosed with breast cancer thanks to CoppaFeel!'s awareness campaign.

On hearing Kris' story, Jenny marched back to her GP and demanded a referral, where she was later diagnosed with breast cancer. "I wouldn’t have done that if I hadn’t heard your story," Jenny told Kris.

Since that day, the team have received countless emails with similar stories.

Annual research conducted by the charity shows that their influence has made people more likely to self-examine. The 'Check 'em Tuesday' campaign alone meant that The Sun readers (of which there are 1.7 million women aged between 18-35 each day) are now four times more likely to self-examine, and at least 6 women have had their breast cancer diagnosed as a direct result of reading Kris’ column.

But Kris says it’s hard to measure the impact just now.

"I wish I had a crystal ball that shows the impact in 20 years time," she says.

"All these people will check their boobs and recognise any symptoms in time. The people who we are talking to right now, aren’t going to get breast cancer now. But in years to come they will know their boobs, recognise that something isn't right and hopefully get diagnosed early."

But despite the colossal achievements, Kris remains modest and humble.

"I think my situation is the reason that I’ve been able to achieve what I’ve achieved. Looking back I genuinely don’t think I had a choice," she says, before adding that she didn't think she was "in any way extraordinary".

Her twin sister, Maren, disagrees: "Kris thinks anyone else her position would do same, but I don’t think that would necessarily be the case. There is something special about her, something that sets her aside."

The pair are practically inseparable and have found endless strength in one another over the past six-and-a-half years.

kris and maren

Kris (right) and her twin sister Maren in 2014

"I love working with Maren," says Kris. "It means we get to spend so much time together. We both feel so passionately about the cause, because it sucks just as much for her as it does for me."

"We always say that both of us have breast cancer," she adds. "I have it physically, but we both have it emotionally."

Maren got married in May and Kris walked her down the aisle as their father, Reiner, passed away from a heart attack when the twins were 20. "It wasn't in place of my dad but it just felt right. Kris has been by my side all my life," says Maren.

Kris was also part of the first dance, joining the newlyweds for a rendition of Romy and Michelle's 'High School Reunion'. Maren says: "We didn’t really care if the dance didn’t mean anything to anyone else, because it meant everything to us. Kris was on cloud nine."

The sisters describe the day as the "happiest of their lives". Maren says it was important for the family (including older sister Maike and their mum) to have a day away from boobs and breast cancer.

"My mum worries about Kris more than anyone," says Maren. "I think she finds it really hard. She saw Kris through her toughest times, when she was physically sick from the chemo, and that's probably one of the worst things for a mum to do."

Underneath the boob costumes and cheeky slogans, the reality of CoppaFeel!'s mission and Kris' illness is serious.

Although Kris says her cancer is now "really, really stable", she still has regular treatment and check-up. Each month, she visits Charing Cross hospital to meet with her consultant to discuss any concerns or pains and have three injections - one to strengthen her bones and two hormonal injections to keep her in the menopause "because the cancer feeds on oestrogen". Thankfully, she is no longer reliant on daily pain killers, opting instead for Pilates to help with her aches and pains.

After her diagnosis in 2009, Kris had intense chemotherapy to shrink her avocado-sized tumour so that she could have a mastectomy to remove her breast. During treatment, her hair fell out and she was so weak that she was practically bed-ridden and cared for by her mum.

"Chemo was really shit," she recalls. "It had an accumulative effect on me. By the end I was really rough and couldn’t get out of bed and even going to the loo was a mission. That’s when it hit home that I was sick, but because of the chemo, not the cancer."

She then started the hormone treatment that brought her to early menopause. In 2011, the treatment was increased - or in Kris' words: "they brought out the big guns" - because the cancer had spread to her liver.

But in 2012, a three-day headache told her something was wrong, and doctors found the cancer had spread to her brain. She had intense radiotherapy that removed the tumour. "And touch wood I’ve not had anything else since then," she says.

kris and maren

Kris (right) and Maren in 2009

Now, Kris visits a hospice where she goes for massages and to see a counsellor, but she remains frank about her illness.

"A hospice is not just a place to go and die, it helps me survive and live," she says. "And if it is where I die, it is where I die. There's no need to sugar coat it."

Although Kris is fully aware that her cancer is terminal, she doesn't speak to her consultant about her prognosis.

"I don’t need him to bullshit me that going to be here forever and I don’t need him to tell me that I might die tomorrow," she says. "I like the facts to know what is going on with my body and then have the options laid out for what we are going to do next."

Maren says she "hates it" when her sister goes to the hospital. "We’ve become desensitised to a lot of news about her health. But I still hate it when she has to go to hospital, I always dread that we could hear bad news."

She says finding out that Kris' cancer had spread to her brain was particularly tough. "I thought that might change her as a person," she reveals.

Still, Maren takes her emotional cue from her sister: "If Kris isn’t on the floor crying, then I don’t have a right to do that either. If she is strong and focused on sorting out treatment plan, all I can do is be by her side and make sure it happens."

Although Kris has always faced her cancer head on, she says she still has dark moments. "I have shit days," she says. "I just don’t talk about them as much."

If it’s really bad, such as when her good friend died of breast cancer recently, she goes to Cornwall to walk the dog, Rambo, on the beach with her sister. "That is my escape," she says.

While neither sister likes to look too far ahead, they hope that the charity will be able to go on without Kris.

"I think legacy is quite a self-indulgent thing to talk about," says Kris. "But I'd like the charity to have longevity and to be sustainable."

That’s why CoppaFeel! launched Rethink Cancer, a campaign that calls for cancer awareness to be added to the curriculum.

"If we can get cancer in education, it would be such a big milestone," she says. "I know that what the charity has made ripples that will last a long time. But it's stuff like legislation that sticks long after someone has died."

Kris says she's trying to get her story away from the charity, to ensure it goes the distance.

Most recently CoppaFeel! teamed up with ITV's Lorraine for Breast Cancer Awareness month to launch a campaign called #Breastmates, which encourages people to get together with their friends and family to look out for signs of breast cancer.

"The other day I was in the green room watching my friend Laura on the sofa telling her story, not mine. I had been on the sofa the week before but watching her tell her story made me so proud," she said.

"It made me think that maybe, just maybe, there is a way that the charity can go on without me."

To find out more about CoppaFeel! and support them, visit their website.

Also on HuffPost:

Suggest a correction
Comments

CONVERSATIONS