Six years of being batted away by doctors finally led to a devastating diagnosis that ‘changed everything’ for Kris Hallenga – but gave her life a new purpose, too. This is her remarkable story.
‘I am sorry. It’s not good news. You have breast cancer.’
In an airless consultation room, I was given the results of the mammogram and biopsy I’d had a week before. I felt detached, like a surveillance camera hanging from the corner of the room, capturing a life being shattered. My mum burst into tears. I remember her first words like I’m still there: ‘It should be me.’ I was 23 years old and I’d just been told I had stage 4 cancer.
Around 150 women a day in the UK (one every ten minutes) are diagnosed with breast cancer, I was told, and how I describe that moment would probably be no different from the way they would. I was baffled that this was the first time the word ‘cancer’ had come up, and my journey to this very moment made this all the more bewildering.
That day changed everything.
I first noticed that my left boob was smaller than my right when I was 17, but my GP said it was ‘normal’ – and a few years later told me my lumpy boob was ‘normal’, too. Two years later I was forced to notice my boobs again, as they’d left a little orange mark on the inside of my bra. This is known as nipple discharge. Yes, it is one of the symptoms of breast cancer. No, I did not know this at the time. I presumed it was normal, that this stuff happened to girls my age. But it doesn’t.
I lived with a lopsided chest and a leaky boob for two to three years. Writing that makes me feel embarrassed, but without someone telling you differently, how would you know it wasn’t right? I refuse to blame myself – it wouldn’t change anything, and my reality is hard enough without the guilt.
It wasn’t until my boob started to become painful that I booked another appointment to see the GP. She declared it was ‘probably hormonal’ and recommended I take evening primrose oil to help with the tenderness. It was exactly what I wanted to hear.
But the lump was still there. Some nights I noticed some discomfort when lying on my front. My left boob would sometimes even feel like it was burning up. Six months later, after two further appointments, my GP reluctantly referred me to the breast clinic at Northampton Hospital. She warned that, because I was under 30 and thus a non-urgent case, it could take six weeks for the appointment. But I managed to get a cancellation ten days later and the consultant, Mr Dawson, confirmed the lump was a hard, non-liquid one.
He asked me to come off the pill to see if it would make a difference and come back in three weeks. When I did, I took a T-shirt covered in orange fluid which had leaked from my breast overnight: I didn’t want anybody to convince me this was ‘nothing’.
At last there was a shift. Looking at an ultrasound screen he said, ‘I can’t tell you this is nothing to worry about.’ One week later, I was back receiving the results.
I walked out of the room clasping a blue folder full of pamphlets about breast cancer, the surgery, support groups. The folder signified my membership of a club I hadn’t applied to nor wanted to be in. The breast cancer club. I stared at myself in the mirror and for the first time I didn’t recognise the girl I was looking at. This girl had cancer.
Worse was to come. My back had been giving me all kinds of grief and my consultant ordered a CT scan to investigate the cause. It showed that the area in my back that had been causing me so much pain for the past three months was cancer on my lumbar spine, taking up two vertebrae.
When cancer has already hotfooted from the primary site (my boob) to another part in the body (my spine), it makes removing the original cancer site not the cure they initially hoped. One moment you’re focused on cure, the mirage of a life beyond cancer, the next it’s ‘sustain life for as long as possible’, otherwise known as palliative care.
I knew that now the cancer was incurable. But I didn’t know what having incurable cancer really meant. Not until I googled it, at 2am, of course – why wouldn’t you scare yourself in the middle of the night, when your life already feels like it’s caving in? As soon as you type ‘secondary breast cancer’, you nosedive into a black hole. In bold letters it said: ‘average survival time: two to three years’. I shut my laptop and took some deep breaths. I tried to convince myself that wasn’t going to be my reality. Statistics were just numbers. I was not a number: I was a human. A human who believed in endless possibilities.
I knew that telling my twin, Maren, would make it real. Maren and I are so close that we spoke a twin language for a while – in some ways we still do. I wanted to shield her from the pain, but also knew I couldn’t face cancer without her. Once it was out there it couldn’t be untold, and just as my life had somehow changed that day, hers would too, and for that I felt overwhelmingly guilty. ‘Let’s do the crying now. Crying is good. But then we crack on and deal with this, OK?’ I insisted.
I had palliative radiotherapy for my spine so I could walk without crying, followed by chemotherapy – an aggressive approach that left me infertile. Even so, it was pointless telling me to rest. Being ill only made me want to feel more alive than ever. I gave myself no time to grieve the loss of the former me. I was fixated on creating something that could hopefully help others not end up in the same sticky spot.
I had no clue how to make it a reality. I was just little ol’ Kris stuck at her mum’s, jobless, with a body that was fighting the biggest fight of its life. Yet along with that sad reality another came forth: I had nothing to lose. It was strangely liberating to have already experienced some of the worst things that can happen to you at the age of 23. I allowed myself this thought: perhaps survival means more than not dying?
Two weeks after my first of eight chemotherapy sessions, I was sitting at my mum’s dining table with my friends, plus Mum, Maren and our other sister, Maike, talking about ways in which we could start a campaign that might encourage people – our people, all our friends and people of our age – to check their boobs. ‘Cop a feel. What do you think about that for a name?’ I asked sheepishly. ‘We could turn what some might think of as a bit of a risqué, inappropriate turn of phrase into something that makes people check their boobs – giving it a whole new meaning. A life-saving meaning.’
We needed to get our message out there. We started at festivals – where better to speak to young people? I had no hair, but I did have stickers with our logo, a tent, my friends and some face paint. We’d start talking about CoppaFeel! as if we actually knew what we were doing. Using me as the hook helped make people understand it much better. I came alive with every conversation I had.
We applied for more festivals that summer of 2009 and found ourselves in more fields, with more friends, painting more faces and having more conversations about boobs. But as our activities ramped up, so did the effect of the chemotherapy on my body. Still, I did an advert for Cancer Research UK because I had nothing to hide – hiding had got me into this mess – and they nominated me for a Pride of Britain award. As a result, I found myself at 10 Downing Street, where Sarah Brown helped me get CoppaFeel! registered as a charity. We’d raised the funds (£5,000) and sent our application to the Charity Commission, but we hadn’t heard anything. I doubt Sarah was expecting me to take her up on her offer to help, but I did, and the morning after the reception, I received a call from Number 10, informing me we’d hear from the Charity Commission soon.
On 28 October 2009, I came around from the mastectomy to remove my left boob and saw Maren. She was muttering something that included the numbers 1132366. It took me a while to understand that she was telling me our charity registration number. That we had, on that day, been granted charity status. There I was, recovering from an operation that was ridding my body of cancer, albeit not all the cancer, and at the same time something was about to begin. (Eleven years later, I had an elective mastectomy on the right breast, for symmetry.)
It was clear from sharing my story so publicly that I was not the only one who had been diagnosed at an early age. So Maren and I recruited a group of young ambassadors we called the Boobettes, who encourage people to check their breasts and talk about cancer. They don’t have to have had it but might know someone who did – or have had a scare. The Boobettes swiftly became a force for good. What I noticed in them all was something I found in myself, too: a need to focus on the positive while also portraying our depth of relief to still be alive.
In 2011, I had a vertebroplasty – a procedure where four pins were drilled into my spine to inject a medical cement to stabilise and strengthen the vertebrae that were crumbling after being zapped so aggressively with radiotherapy two years earlier. Yup, it’s as brutal as it sounds. Afterwards, a CT scan picked up tumours in my pelvis, hips and liver. Since then, routine scans have picked up numerous symptomless tumours in my brain which have been zapped with targeted radiation, ensuring less long-term damage to the rest of my brain. (There are four places breast cancer really loves to go more than others: liver, bones, lungs and brain. Three out of four now achieved. But not quite at the bingo call yet.)
It only fed my need to ride the momentum of CoppaFeel!: I took on every opportunity that came my way. Half marathons, Race for Life, our own event, Festifeel. I hijacked Lorraine Kelly’s boobs live on TV and projected boobs on the Angel of the North. I got the green light from BBC Three for a documentary. Kris: Dying to Live [broadcast in March 2014] was viewed by 500,000 people on the first night, and thousands more on iPlayer. Cancer was finally added to the school curriculum in September 2020, thanks to hassling by us and other parties. Collective power at its best.
But my plan was never to run the charity for ever. The best thing I learned was to have an exit plan, because that means you have got the organisation to a place where it can exist without you. I wanted to be the one who decided when I stopped working for CoppaFeel!, not cancer. I needed to make space for other stuff, too. In 2016, I moved to Cornwall, where Maren lived.
The longer I have cancer the more I realise that the small things in life are actually the big things. If there was a moment that I stayed alive for through all those years of scans and results and treatments, it was 16 May 2015, when I walked Maren down a sandy aisle on a beach in Cornwall. In that instant I understood what being alive meant. If I had ever been anywhere near ‘grateful’ for having cancer, this would be the time.
Huge spotlights are shone on occasions in your life with cancer, and this was one of those times. Fast-forward four years from the wedding. Little did I know that seeing the birth of my nephew Herbie Ray William Sheldon would give me a new meaning of life and love. When I held Herbie, he confirmed something reassuring that I sort of already knew: life goes on. ‘Kris, I’ve got this,’ I read in his eyes.
Who I am today, as I write this, is the sum of 23 years of self-doubt + a cancer diagnosis + 12 years of learning and discovering who I really am. And I like who I am. Cancer gave me permission to start being who I wanted to be and doing what I wanted to do. CoppaFeel! helped me to gain my voice. I needed a label to hang my existence on – survivor, fighter – but now that I’ve found myself, I can shed that safety blanket. I am enough.
This is an edited extract from Kris’s book Glittering a Turd: How Surviving the Unsurvivable Taught Me to Live, which will be published by Unbound on 19 August, £12.99. To order a copy for £11.69 go to mailshop.co.uk/books.* You can get to know your breasts better with CoppaFeel!’s Self-Checkout, at self-checkout.coppafeel.org/onboarding.
*Or call 020 3308 9193. Offer available until 31 August. Free UK delivery on orders over £20.