When Kris Hallenga was diagnosed with Stage 4 breast cancer — the most advanced form — at 23, questions swirled through her head: “Why didn’t anyone tell me to check my boobs? Why didn’t I know I could get breast cancer at 23?”
If she hadn’t known that she could have breast cancer so young, there was a very good chance that others were equally uninformed, she said in a 2021 interview with The Guardian. She spent the next 15 years educating young people about early detection through her nonprofit organization, CoppaFeel, and in a 2021 memoir, “Glittering a Turd.”
On Monday, CoppaFeel announced that Ms. Hallenga had died at 38. A spokesman for the organization said she had died at home in Cornwall, England, and that the cause was breast cancer.
“Survival was never enough,” she said during a publicity tour in 2021. “I don’t just want to survive, I want to be able to really look at my life and go, ‘I’m glad to still be here, and I’m getting the most of what I want from life.’”
Kristen Hallenga was born on Nov. 11, 1985, in Norden, a small town in northern Germany, to a German father and an English mother, both of whom were teachers, according to The Times of London. When she was 9, she moved to Daventry in central England with her mother, Jane Hallenga; her twin sister, Maren Hallenga; and their older sister Maike Hallenga, all three of whom survive her. Her father, Reiner Hallenga, died of a heart attack when she was 20.
Ms. Hallenga first felt a lump in 2009 when she was in Beijing working for a travel company and teaching on the side. During a visit back home in the Midlands in central England, Ms. Hallenga went to her internist. She told The Guardian that her doctor had blamed the lump on hormonal changes associated with her birth control pill.
But the lump grew more painful, and bloody discharge developed. Another internist gave her a diagnosis similar to the first — hormones and the pill. But because Ms. Hallenga didn’t know what would be considered normal, she didn’t have anything to judge by.
“I wasn’t touching my boobs at all,” Ms. Hallenga said in 2021. “I didn’t know anything about them.”
But Ms. Hallenga’s mother, whose own mother had breast cancer at an early age, insisted that her daughter obtain a referral to a breast clinic. By the time she was diagnosed, eight months after finding the lump, Ms. Hallenga’s diagnosis was terminal. It had also spread to her spine.
After an aggressive round of chemotherapy, a mastectomy and hormone therapy, tests in 2011 revealed that the cancer had spread to her liver, she later told The Huffington Post. A year later, doctors found that the cancer had spread to her brain, and she underwent intense radiotherapy to remove a tumor.
But she continued to work through her illness. She wrote about her cancer diagnosis and her advocacy work in a column for her local newspaper, The Northampton Chronicle and Echo, and The Sun. But it was her work with CoppaFeel that reached her target audience: young people.
The organization has sent thousands of reminders for breast self-exams via text message, organized a group of women known as the Boobettes who go into schools to talk about their experience with breast cancer at a young age, helped add cancer awareness to the education curriculum in Britain and aired what was believed to be the first nipple in a daytime television advertisement that encouraged people to get to know their chests.
All of it was done in the hopes that others could avoid a diagnosis like the one Ms. Hallenga was navigating.
“Cancer so often comes with a package of terms — survivor, thriver, warrior — and it’s great if someone wants to hang their existence on those words if it helps them get through the day — if it helps them get perspective, great,” Ms. Hallenga said when her memoir was released. “But for me, I couldn’t really resonate with those words ever. Because I say, unless I’m happy being alive, then what is the point in surviving?”
In 2017, Ms. Hallenga stepped down as chief executive of CoppaFeel to move to Cornwall and spend more time with her sister Maren. Last June, she threw herself a living funeral at the Truro Cathedral in Cornwall. The dress code was YODO — you only die once. Dawn French, who played a village priest in the BBC sitcom “The Vicar of Dibley,” led the celebration of life.
“I’ve never felt love like it,” Ms. Hallenga wrote on Instagram after the event. “I’ve never felt joy like it. I’ve never felt such kinship with mortality. I’ve never felt so alive.”