“Mar, can you feel this weird thing in my boob?” Kris and I were in Barcelona on a short and sweet summer trip with our mum. We were 22, the year was 2008. I had just graduated with a first class honours degree in Garden Design from Falmouth university, Kris, having completed an HND in travel and tourism was shortly heading off to China to work and explore.

Being identical twins, we communicated in a language that was often devoid of words. There was a knowing, a deep understanding, an intuition that we would depend on throughout our lives. When it came to sharing worries and intimacies about our bodies, however, we had little to no experience and so when she asked me what I thought about this strange change to her left boob, I was floored. I didn’t have anything like this lurking in my boob, but I also hadn’t felt mine to really know for sure. Mum and I did our best to sound reassuring yet insisted it would be worth seeing her GP.

This would be the start of Kris’s 8 months journey to eventually being diagnosed with secondary breast cancer. The stage at which the disease is treatable, not beatable.

On initial examination, her doctor put the lump down to hormonal changes, likely related to the contraceptive pill and prescribed evening primrose oil for the tenderness. On her return from China, when the lump had become painful and hot, a different GP insisted that it was still likely hormonal and recommended changing her pill. At this point our mum stepped in, encouraged Kris to return to the GP and demand a referral.

As she waited for the appointment to the hospital, her symptoms developed. Alongside a searing hot painful breast, her nipple discharged an orange-tinged fluid. In February 2009, when Kris was told she had breast cancer, it had already spread to her spine.

Breast cancer is the leading disease-related cause of death for women under 50 in the UK. This sobering and alarming statistic should be enough to ensure that when a 20-something year old woman presents with a symptom, they are taken through a system that acts promptly, not discriminatory.

And yet, still, nearly one in 3 people with breast cancer say they had been dismissed as too young when they first presented with a symptom.

The moment she called me to share her diagnosis, I remember thinking that my life as I’d known it, mere seconds before, was over. It wasn’t just her life we were now fighting for but mine too. I had so many questions and nowhere I could turn for answers that would quell my despair and satisfy my need to understand why this happened to her. Why, at 23, we hadn’t ever been made aware of changes to look out for and why doctors failed to pick it up sooner. We created CoppaFeel! as a call to arms.

Fuelled by anger and disappointment, we channelled our energy into a campaign which gives young people the power to demand action. For them to understand the signs, to check regularly and have the confidence to act on concerns. But awareness is not enough when we’re faced with a system that still turns young people away.

No-one's outcomes should depend on luck, confidence or whether someone believes they are old enough to have the disease. Kris lived for 15 years with breast cancer.

In that time, she navigated new medications, new doctors, new hospitals, scan results, protocols and pathways. Living with cancer is exhausting, relentless and all-consuming. If you look away and not pay it attention, it will find ways to move, grow and out-smart.

As the cancer found its way into her brain, she was offered radiotherapy treatment to her whole brain. Not because her whole brain was consumed by the disease - in fact, the sum of the extent was compared to the size of a sugar cube, but because this was what her hospital offered. And for many, this treatment is effective at obliterating large scale tumours. But in its wake it can cause destruction of a perfectly healthy, functioning brain. To preserve this, Kris sought out targeted treatment at Queens Square Neuroscience centre in London, which she was able to receive on the NHS, alongside her care in Cornwall. She would go on to access this treatment several times and become the poster girl for the company that makes the machines.

I remember sitting in on the appointment with her neurosurgeons as they discussed her case. I remember the desperation and the hanging on their every word. And the relief that followed when they agreed to treat her. I watched her relax into her chair, safe in the knowledge that there was a plan, one that she felt in control of.

‘Perhaps survival means more than not dying’ Kris wrote a few years ago. Not dying was very high on her agenda but she always strove for more than that. Accessing the care she deserved, fighting for better outcomes for her and others, pushing boundaries and demanding change. And beyond that, striving for the best quality in the life she had left.

After Kris’s first brain seizure in January 2024, it became clear that treatment options were running out. Kris had always maintained that she would be the one to decide when treatment would stop. While her confidence in medical professionals had grown in the 15 years, she faced this disease, the autonomy she needed in the decision process remained steadfast. This extended to the care and support she sought in her palliative care team.

In March, the chemo showed no signs of offering the relief we needed from the seizures and with advice from her brain team in London and her trusted oncologist in Cornwall, the decision was made to halt treatment. Caring for Kris became my priority as her cognitive health rapidly declined.

Dying at home was always her wish. A simple request that comes with meticulous planning, trust and time. Thankfully I had the attributes required to ensure we could grant her this wish.

But I couldn’t help but think of the many people who don’t have the privilege of choice or don’t have the capacity to communicate their true needs. I was able to manage medications, navigate new symptoms, organise nurse visits and still remember to be her sister. I was supported by a supportive palliative care nurse who took the time to understand both of our needs. I had to learn how to communicate not just my needs but the needs of my sister.

As Kris took her last breath in May 2024, I sat beside her, safe in the knowledge that I did everything I could to give her the end that she wanted.

We will never know for sure if Kris’s cancer had been found sooner whether she would still be here today. But what I do know is that the lessons she learnt, the meaning she cultivated and the wisdom she imparted came from learning to trust herself.

We know our bodies better than anybody else. Let’s stop apologising for that and start demanding more.