In 2019 Kris Hallenga posted a letter addressed to her past self on the CoppaFeel website, recognising a decade since she had been diagnosed with stage 4 breast cancer. Reflecting on everything from successes to failures, she muses at one point “you’re going to like the idea of writing a book but probably never get on with it”. A year on and she is writing her book How to Glitter a Turd after successfully crowd funding for it. Based on her blog of the same name, the book follows Hallenga through her diagnosis and the process of learning to live with a life limiting disease whilst founding a charity. She recognises that her experience of breast cancer is “extraordinary” because “I’ve survived with this for such a long time, which is obviously rare so I really wanted for people to know that a story like this exists. So if someone is diagnosed they know that actually there is someone who survived it for a long time, and it gives people hope.” When I mention the uncertainty she expressed a year ago as to whether or not she would ever write a book she laughs: “Yeah, I shouldn’t doubt myself like that”.
It has now been eleven years since Hallenga was diagnosed with cancer, and since CoppaFeel was founded. “I had no knowledge of breast cancer and didn’t know I should be checking my boobs, so I didn’t”, she tells me. When she was 23 she found a lump in her breast, “I got it checked out and after 8 months of going back and forth to the GP it was diagnosed as stage 4 breast cancer.” The late diagnosis meant that the cancer had spread from her breast to her spine, and whilst it could be treated it couldn’t be cured. A couple of months later she decided to found CoppaFeel alongside her twin sister Maren, a decision borne in part out of “the frustration and the anger, the whole situation got me really baffled about why no one was telling young people to check their boobs”.
From its early beginnings, spreading breast cancer awareness amongst young people was the drive that pushed CoppaFeel forwards. “We wanted to start a conversation with young people about their boobs,” she says, “to normalise that subject of checking your boobs, touching your boobs.” One of their first steps, before even receiving their charity status, was to go around music festivals and initiate a conversation with young people about breast cancer. From this, the motivation to educate young people about the importance of checking themselves for symptoms grew, even though “we didn’t know how we were going to do that or what success looked like to us, but we had enough evidence from going to festivals and speaking to young people about their boobs that showed that there was a severe lack of knowledge and understanding.”
One of the charity’s big aims which continues today is “to stamp out late detection altogether”, Hallenga tells me, and she expresses the determined belief that “cancer doesn’t have to be diagnosed late”. I’m curious as to how she learned to define success during the early stages of the charity’s foundation, and particularly as it began to slowly grow in the public’s consciousness. For her, it was when the first person who informed them that their message had helped her to be diagnosed early which “became the indication that what we were doing was having some impact”. As individual stories began to flood in, “success suddenly became evidence, anecdotal evidence from these young people saying ‘I was diagnosed early because of you guys’.”
Alongside talks at schools and universities, CoppaFeel have maintained their campaigning work at festivals, have hosted flash mobs and they’ve launched a number of successful social media campaigns with numerous companies. Throughout it all the charity has maintained a positive tone in their education, since “the truth of the matter is you’re talking about boobs and getting to know your boobs isn’t a scary conversation”, Hallenga suggests. “Cancer, the realities of cancer, are obviously. But people don’t even have to consider what life with cancer is like they just need to check their boobs.”
The organisation’s work at festivals across the UK has been enormously popular, and they have launched their own event “Festifeel”, which Hallenga describes as her “baby”. The annual comedy and music gig takes place during October for Breast Cancer awareness month, yet planning for the event this year has been subject to deliberation amidst the pandemic. “The idea that it might not happen this year is really sad”, Hallenga tells me. The event has been part of CoppaFeel’s fundraising and awareness activities for years now, but “coronavirus has interrupted a lot of events and a lot of things, so Festifeel is perhaps a small fight in comparison to something.”
Avoiding the topic of coronavirus would be impossible, and charities are particularly struggling with the challenges the pandemic has created. However, CoppaFeel has continued to find new ways to spread awareness and continue key aspects of their work. “I think we are really lucky cause we are quite a digitally savvy organisation anyway” Hallenga acknowledges, “so it means that we can put a lot of our services online. So our boobettes who usually go out to do talks in schools or workplaces we’ve now set them up to do webinars online instead.” They even have a Boob Bot, a programme on facebook messenger which informs you on how to check your boobs and what to look for in real time. Whilst the organisation has adapted to the challenges posed by going entirely virtual “in terms of fundraising that’s a far bigger challenge. Because a lot of events have been cancelled and a lot of people are obviously thinking about money, so it’s a real challenge for all charities right now.”
Especially as a relatively small charity, the long term implications of the pandemic present a concern. But Hallenga has worked to create a strong voice for CoppaFeel since founding it, and in 2014 she was asked if her life and work could become the focus of a BBC documentary. Opening up about her experiences of living with stage 4 cancer whilst running a charity on camera presented its challenges. “At first it was quite hard to do”, she tells me, “I found the video diaries the worst, I just found them so awkward.” However the process of filming and building rapport with the crew allowed the film to become therapeutic, and speaking to a camera “sort of became really natural and I think that’s what has made the film so successful because it’s been very authentic, and very real and very raw.”
Hallenga has also spoken openly about breast cancer and the reality of living with the disease in various newspapers and magazines. But it was the Check ‘em Tuesday campaign she ran with CoppaFeel in The Sun in the form of a weekly column which truly propelled the charity into the national consciousness. This “was monumental” she says, because “it kind of got a health message into a paper every week for eight months”. The column focused on the charity’s breast cancer awareness message, but also allowed Hallenga to share her story of living with the difficulties of a life-limiting illness. She’s previously described how the column became a kind of therapy for her, because “it allowed me to express what it was like living with cancer, and that’s not something you tend to read about in newspapers. It was just a normal person with a very abnormal story, sharing what life was like.”
The campaign faced a level of criticism for its association with The Sun, but this was something they were prepared for, Hallenga tells me. She is still strong in her belief that voicing the message of the column was the most important thing: “we were quite firm on how we believed it was going to make a difference, given that 6 million people read the paper everyday.” As the column progressed, its impact began to parallel the early success of CoppaFeel, and people began to send in anecdotes and stories of how the campaign encouraged them to get symptoms checked. By the end of the eight month campaign, there had been a real movement in national awareness of breast cancer. “We saw such a huge shift in the checking behaviours of the people who read The Sun compared to other papers,” she comments, “and we can kind of go “do you know what, we can prove that this has made some change”. The eight month campaign not simply drove forward the charity’s central campaigning message, but also gave a rare opportunity for CoppaFeel to embed itself in the national consciousness; as Hallenga explains, “small charities don’t get opportunities like that very often.”
For a charity such as CoppaFeel, whose central intention is to spread a message of awareness, publicity such as this is important. National attention from the film “Kris: Dying to Live’ and the charity’s column with The Sun only propelled the organisation’s message further, and in July 2017 cancer awareness and education was put on the primary and secondary school syllabus. “I mean that was amazing,” Hallenga recalls, “the day we realised that getting something written up in the curriculum that was potentially going to really help people was incredible.” Achievements like this should be celebrated, but she is quick to remind that the work is never done. She moves onto new projects quickly, but she suggests that the celebration is important in maintaining the drive: “I guess in a way you’re more motivated to keep going and it keeps the momentum going, which is great.”
Given the current circumstances, judging what the future holds for CoppaFeel is challenging. Hallenga stepped down from the position of CEO of the charity in 2016, a move which she describes as “a dream come true”. Since founding it in 2009, she affirms that the charity has grown to a stage where it no longer requires her to lead it, and for her, the combined role of founder and CEO is not always a helpful position. “I just don’t think the founder should run charities forever, I think it can really hinder them”, she explains, “and I also wanted to be able to step away at my own choice, at my own decision and not as the result of a new cancer progression.” However, she still works closely with the charity and continues to work around breast cancer awareness and education. For Hallenga, it’s a message that continues to be incredibly vital, and continuing education confirms her optimism that in the future “I really believe that cancer will be looked at as this thing that happened, that doesn’t kill people anymore”.