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When Claire felt a sudden pain in her leg while walking across a beach in 2016, the thought of cancer didn’t cross her mind. Having already faced primary breast cancer in 2013 and completed her treatment, Claire was ready to return to her job as an IT director at a healthcare company. She thought her breast cancer journey was behind her.
Receiving the diagnosis of metastatic breast cancer, however, was different the second time round. Treatable but not curable, she had to confront the harsh reality of living with a life-limiting illness. “When I had my initial primary breast cancer diagnosis, my kids were only 10 and 12 at the time. It was so terrifying, but I worked in the healthcare industry and I told myself to just believe in the science. I’m going to do what my oncologist says, take the drugs and I’m going to be fine. We’ll get through this.”
The initial treatment Claire was put on didn’t work, and the tumours in her pelvis and ribs grew by three centimetres in just three months. “That was really scary. I was just very aware of the need to find something that worked – otherwise, for want of a better phrase, it would be curtains. I felt a lot less hopeful telling my kids the second time.”
After a decade of treatments, Claire has learned a powerful truth: while she can’t control the cancer, she can control her mindset. She starts each day with a choice: how will she approach it? “If I wake up and decide that I’m going to be fed up, then I allow myself to do that. But most of the time, I make an active choice to be positive. When I’m feeling well enough, I volunteer locally. I also love photography, so try to do that as much as I can.”
Having studied languages, travelling is another hobby that Claire enjoys. “I just love meeting different people and seeing new places. So I spend a lot of time planning and thinking about where I want to go next.” Claire’s experience has dramatically shifted her perspective on life and relationships. Her philosophy on life has become clear: don’t put things off. “I never have a meeting with friends without putting another date in the diary. We always have a plan to get together; we don’t put things off. Because you just never know what’s going to be around the corner.”
commercial editor: lEONIE EASTWOOD ART DIRECTOR: MICHELLE EDWARDS WRITER: NIAMH MCCOLLUM PHOTOGRAPHY: SARAH SEAL
DIRECTOR: ELIZABETH HERRIDGE production manager: matt gibbs FASHION Stylist: lauren franks HAIR: ami fujita make-up: laura onea
Producer: daniel gould Project manager: eloise tilbury
I
n a world full of clutter and chaos, it’s often the small moments that cut through the noise and add life to our years. Here, sharing their remarkable stories with Marie Claire UK, Claire, Laura, Jo, Juliet, and Lisa unpack the reality of living with secondary and primary breast cancer – and reveal the moments that define them.
Every moment is big in the lives of women with breast cancer – from the minutes spent asking questions in your oncologist’s office, learning more about what’s unfolding inside of you, to summoning the strength to sit up in bed some mornings or laughing with a friend on the sofa. These are the moments that count; the defining moments that muster the resilience required to see you through darker days.
Here, remarkable women reveal their unpolished realities of breast cancer, as well as the memories they look forward to making.
- CLAIRE
‘THE SHOCK OF RECURRENCE STRENGTHENED MY RESOLVE’
Women who have experienced the life-altering diagnosis of breast cancer share their stories
The Moments That Count disease awareness campaign has been developed and funded by Novartis Pharmaceuticals UK Limited (Novartis) with insights from breast cancer patients. This film has been funded by Novartis and created by Marie Claire with direct input from Novartis and participating breast cancer patients November 2023 / 313984
Moments
THAT COUNT
‘LIVING ON THE EDGE HAS BECOME MY NEW NORMAL’
- LAURA
- JULIET
‘I HAD TO PESTER THE DOCTORS FOR A DOUBLE MASTECTOMY’
Laura, who was diagnosed with secondary breast cancer at the age of 28, likens her experience to living on a rollercoaster. “I know there’s ups and downs, but I don’t know when they’re coming and I can’t get off. Eventually, the track is going to run out.”
Living on the edge has become her new normal. Every three months there’s a new scan, each a harbinger of potential upheaval. “You just learn to accept that things are going to change. I’ve had a lot of friends pass away and then you live with this survivor’s-guilt feeling. I sometimes find the mental toll of having cancer more challenging than the physical side.”
Laura remembers the personal sacrifices she made when first diagnosed, too, including leaving her beloved career as a hairdresser and forgoing the chance to start a family.
Another mental challenge for Laura was not knowing anyone else at her time of diagnosis that was also living with secondary cancer. When she met Nicky, a fellow secondary breast cancer patient, at an awareness event for women, they realised they had a lot in common. “Unlike most of the other women there, we didn’t have kids. We just wanted to get a glass of wine and have a nice time. We met up again and decided to start an Instagram account for other women like us.”
From there, Laura and Nicky’s modest feed turned into an account with 20,000 followers. Their campaign went viral and appeared on the front of newspapers; their stories connected with patients across the globe – from the Philippines to New Zealand. The premise? To create a network of fun – a respite from doom-and-gloom discussions about treatment and how to cope with cancer. Tragically, however, Nicky passed away in September and the community held their first event without her recently. “It’s been a really tough few weeks, because obviously I lost Nicky. That [event] was really hard. We all got together and there was just this slight cloud hanging over the day,” says Laura.
Despite this, Laura’s sanguine attitude has inspired what she fondly terms her “living list” – a list of experiences to look forward to between treatments. One of her most recent additions was enjoying afternoon tea at The Ritz in London. “Having this list has been like a motivational kick when I’m having a tough day,” she says, adding it’s a way to share her journey with friends.
- LAURA
‘I ALWAYS WANTED TO BE A MOTHER, BUT
MY ILLNESS MEANS I CAN’T HAVE CHILDREN.
IT’S CHANGED MY DREAMS; I’VE HAD TO ACCEPT A WHOLE DIFFERENT FUTURE [TO THE ONE]
I’D IMAGINED FOR MYSELF’
Jo was 38 and on maternity leave when she first received a primary cancer diagnosis. Seven years later, secondary cancer came into the picture, too. Now, 14 surgeries later, she knows all too well what living on a knife’s edge feels like.
A recent round of unexpected treatment side effects prevented Jo from joining our shoot, but she remains a vital voice in the campaign and, for her, exercise is what’s helped to keep her feeling strong and resilient during the daily uncertainties of living with cancer. In fact, she was inspired by a woman she saw on the news with secondary breast cancer who was still running marathons and raising funds for charity: “I just remember thinking, if she can run marathons with secondary cancer, I can do the same with primary cancer.”
Sixteen years later, with a new diagnosis, Jo still champions the message that movement can be a powerful tool for mitigating the side effects of chemotherapy and lives a life of constant treatment every three weeks. “There’s this historical idea that if you’re doing chemotherapy, you can’t do anything but sit on the sofa with a box of chocolates. But, sometimes, that can lead to issues down the road.”
As a result, Jo now organises motivational exercise retreats for breast cancer patients attending from across the UK, plus Nordic walking – an exercise that helps move the lymphatic system and reduce lymphedema-related swelling caused by chemotherapy – for groups in Greater Manchester. But Jo’s advocacy work for those living with secondary breast cancer extends far beyond physical activities: she has also founded METUPUK, a patient group that tirelessly campaigns to improve outcomes for those diagnosed with secondary breast cancer.
- JO
‘FINDING COMFORT IN EXERCISE INSPIRED ME TO ADVOCATE FOR PATIENTS’
‘FOR THE 30% WHO HAVE THEIR CANCER METASTASIZE, FAR TOO MANY OFTEN DISCOVER IT TOO LATE. THAT AWARENESS NEEDS TO CHANGE’
- JO
Jo has also developed infographics to help patients identify red flag signs and symptoms – a first-of-its-kind visual tool illustrating how the disease metastasizes based on different breast cancer types. Signposted by NHS England, the tool has now been translated into 12 languages, gaining global reach.
Thankfully, this dedication to the cause hasn’t gone unnoticed, and Jo’s been nominated for a prestigious This is Manchester Award in recognition of her local, national, and international contributions to improving the lives of fellow breast cancer patients.
Jo counts herself lucky in identifying her secondary breast cancer early, thanks to an offhand conversation with a friend on Twitter about a lump in her neck. “I’ve had a good outcome because mine was [detected] early, and I’ve lived with it for nine and a half years. But for the 30% who have their cancer metastasize, far too many often discover it too late. That awareness needs to change.”
According to Juliet, there’s no right way to navigate the complex terrain of breast cancer. When Juliet was diagnosed in January, 2016, the process was a steep learning curve; she didn’t know anyone who had battled breast cancer before. Today, she’s cancer-free, thanks to chemotherapy, a double mastectomy, and a year of targeted therapy. One roadblock, however, was convincing her surgeon to give her a second mastectomy.
“I had the second [mastectomy] 18 months after the first one. Truthfully, I had to keep pestering the doctors because they seemed hesitant. They thought that, because I was a woman, I would obviously want reconstruction and to get my breasts back. But everyone’s different and everyone has the right to make their own choices.” Before doing her own research, Juliet didn’t realise that opting out of reconstruction was a possibility. “Being informed enough to make an informed choice is key. So much focus is put on reconstruction when there’s a lot of other women out there like me. I wanted to increase that visibility.”
When it comes to offering advice on supporting partners, friends or family members dealing with cancer, Juliet is firm in her belief that actions speak louder than words. “A lot of people text to say, ‘Let me know if there’s anything I can do”, but I think that’s looking at it the wrong way round. Whether it’s taking their dog for a walk, doing some cooking or taking their kid down to the playground, doing rather than just asking is really helpful,” she says.
All five women agree that there’s still a lack of understanding around what secondary breast cancer is. Lisa, diagnosed at the age of 33, in 2017, continues to grapple with misconceptions – from acquaintances and journalists to healthcare professionals. Her condition, while incurable, is far from terminal. “There’s been a number of times I’ve been referred to as being terminal. At this point in my diagnosis, I am not terminal. There are still options. There are still treatment lines.”
Lisa feels passionate about spreading more public awareness around the correct terminology, as well as what secondary cancer means. At the point of her diagnosis, she found there was little information for secondary breast cancer patients and decided to turn her experience into positive action by raising money for research and education. “People are starting to talk about metastatic (or secondary) disease, but generally it’s reported incorrectly. If you read an article about somebody that has metastatic disease, nine times out of 10, it’s not referenced as metastatic disease, it will say they lost their fight to breast cancer. No, there’s a difference between primary breast cancer and metastatic breast cancer.”
Six years into her own diagnosis, Lisa has witnessed her son’s transformation from a four-year-old boy, who knew little about her condition, to a more aware, inquisitive and curious 11-year-old. “He was five when I had brain surgery. He came in to see me and I was cut from ear to ear. We tried to laugh and joke about it like, ‘Mummy looks like humpty dumpty’ and that was hard. But now at 11, we’re finding it even more challenging. He really knows me; he sees the days I’m not feeling well. He has Google so can do his own research.”
Although Lisa’s son knows that she has cancer that’s incurable, she and her husband have made the decision not to use terminology around him. “As he gets older, I’m sure the questions will keep coming, but I think one thing we’ve done right is keeping an open dialogue whilst still normalising life as much as we can for him. I don’t think there’s a textbook on how to deal with it. Every parent parent’s [their child] differently, regardless of whether they have cancer or not.”
- LISA
‘I HAVE INCURABLE CANCER, BUT I’M NOT TERMINAL – USING THE CORRECT TERMINOLOGY MATTERS’
“As he gets older, I’m sure the questions will keep coming, but I think one thing we’ve done right is keeping an open dialogue whilst still normalising life as much as we can for him. I don’t think there’s a textbook on how to deal with it. Every parent parent’s [their child] differently, regardless of whether they have cancer or not.” Talking about their own experiences brought back memories of their friend Mary Huckle, a Pilates teacher and mother of three who passed away in June this year, eight years after being diagnosed with secondary breast cancer.
Mary played a pivotal role in opening up the conversation around end-of-life experiences for cancer patients, sharing her own journey in the weeks just before her passing. “She was the epitome of making moments in your life count,” says Lisa. “Even when she was so poorly, she was still holding her head high.” It’s a sentiment shared by Claire, who adds: “I feel like I’m standing on the shoulders of giants. The community around breast cancer is so strong.” For these women, the moments that count keep coming. Jo looks forward to her weekly sessions as a qualified Nordic-walking instructor in Greater Manchester. Lisa was proud of turning 40 and being able to see her son start Primary Seven: “I didn’t think I was going to see him finish Primary One – I’m so proud my body got me there.”
Juliet has started growing flowers in her garden and loves going out every morning to check which ones have opened. Laura went to Croatia with an old friend who lives in Australia: “I hadn’t seen her in five years. I thought the last time I saw her that would be it.” Claire raced a speedboat across the water to an island she was staying on with her friends: “It was just fantastic. At that moment, I wasn’t thinking about cancer at all.”
For women living with Secondary Breast Cancer, Every. Moment. Counts. Learn more about secondary breast cancer and get support at the Novartis UK campaign website momentsthatcount.co.uk. Share your moments that count living with breast cancer on social media using #momentsthatcount
The Moments That Count disease awareness campaign has been developed and funded by Novartis Pharmaceuticals UK Limited (Novartis) with insights from breast cancer patients. This film has been funded by Novartis and created by Marie Claire UK with direct input from Novartis and participating breast cancer patients, whose knowledge and insights have informed the content and direction for
the film.
- CLAIRE
‘I FEEL LIKE I’M STANDING ON THE SHOULDERS OF GIANTS. THE COMMUNITY AROUND BREAST CANCER IS SO STRONG’
Juliet
Laura
Claire
Lisa
metupuk.org.uk 2023
