'I'm teaching them how to look after themselves as girls. I'm teaching them how to live without me while I'm still here'... The heart-wrenching life lessons Leona Macken is passing to her children one year after her HSE apology

Published: 22:07, 10 July 2026 | Updated: 22:07, 10 July 2026 There are life lessons every mother passes on to her daughter — how to do her hair, talk about her changing body, and remind her she is strong, independent, and should never be afraid to use her voice. These ordinary things carry a deep, heartbreaking poignancy for Leona Macken. Leona, 39, has taught her nine-year-old daughter Quin how to double shampoo and condition her hair — wisdom from her years as a hairdresser.  Her younger daughter, Drew, starting first class this September, has just been allowed to walk a bit further to the school gates alone while Leona hangs back to blow her a kiss. ‘These are things all parents do for their kids,’ says Leona, originally from Cork but now living in Dublin with her husband Alan and their daughters.  ‘Maybe it’s just a little premature in our house. I’m teaching them how to look after themselves as girls. I’m teaching them how to live without me while I’m still here.’ It is a sentence no mother should ever have to say. Nor is it a life she should be living. At just 39, Leona is fighting for her life, living with incurable stage four metastatic cervical cancer after abnormalities in her smear tests were wrongly reported as negative.  Last year, the HSE apologised in the High Court for these failings, after experts concluded the delay in identifying pre-cancerous abnormalities led to her dire prognosis. Now, instead of planning milestone birthdays and everything she imagined motherhood would bring, Leona plans her life two or three weeks at a time —because that’s all stage four cancer allows. ‘I don’t plan too far ahead anymore,’ she says. ‘My 40th birthday is in January, but that’s too far down the line. I don’t know what that will look like for me.’ When doctors told her last September she had only ‘short years’ left, the future she imagined with Quin and Drew, all those precious milestones of their lives, disappeared instantly. She was left reeling in such shock she couldn’t speak for days. ‘I couldn’t look at the girls without crying,’ she says. ‘All I could think of was everything I wouldn’t be there for, and how much they needed me.’ The tragedy is that long before cancer was mentioned, Leona did everything right. She attended every smear test, even paying privately before she was eligible for CervicalCheck, understanding the importance of early detection. Like many women, she was aware of Vicky Phelan’s devastating diagnosis and campaign, and believed that keeping up with screening meant anything wrong would be caught early. When doctors told her last September she had only ‘short years’ left, the future she imagined with Quin and Drew, all those precious milestones of their lives, disappeared instantly  ‘I had every one of my smears,’ she says. ‘I was very aware of cervical cancer and everything with Vicky. I thought if you kept up with your smears you were safe — that anything would be caught early.’ For a while, everything seemed to be going well for Leona and her husband Alan. Very much in love, they welcomed Quin in 2017 and Drew two years later.  But after having her children, Leona began experiencing irregular periods and pelvic pain. Like many women, she initially shrugged it off as hormonal changes after pregnancy. At one point, she wondered if she was entering early menopause at just 33; her GP reassured her she was too young.  Then, despite worsening symptoms, her 2020 smear came back normal and because her smear history showed no abnormalities, cancer was never a consideration. ‘I was never once asked to repeat a smear,’ she says. ‘Part of me brushed it off, but I knew something didn’t feel right. As women, we’re tough- it takes a lot to say, actually, I need this checked.’ By the end of 2022, Leona began tracking her symptoms, which were now ‘stacking up’ and noticed more warning signs with irregular bleeding and pain. Still, tests like ultrasounds came back clear. Then, at her next smear in early 2023, everything changed. The test showed abnormalities and activated Leona’s deepest fear. ‘I had googled cervical cancer symptoms and I just knew — I had every one,’ she says. When she attended her colposcopy appointment, she says she sensed something was wrong before anybody spoke. ‘I could feel the tension in the room,’ she says. ‘Something was gravely wrong.’ During the procedure she began bleeding heavily, and doctors told her she’d hear back within three weeks instead of the usual six. ‘I was going on holidays and I told them to wait to ring me. I knew I was going to get bad news.’ The call came the day Leona flew home. She was told to come to the hospital the next morning and bring Alan. She started to cry and couldn’t stop. ‘When I got to the hospital, my face was swollen, but I entered warrior mode,’ she says. ‘I was like—OK, it’s cancer. What’s next?’ Initially, scans suggested stage 1B2 cervical cancer and she would need a radical hysterectomy. Doctors removed two lymph nodes, and she was told with treatment she could ‘live her life.’ But two weeks later, her diagnosis was revised to stage three cervical cancer. ‘That’s when I was thrown into I was into a different world of Hospital appointments, chemotherapy, and radiotherapy became her new normal. Leona finished treatment in November 2023, and though scans looked encouraging, she suffered debilitating pain. Again, though, she was told this was to be expected. ovaries, so I thought maybe this was just life now,’ she says. ‘The hospital told me the pain was from treatment.’ Leona, who had already stopped working, found simple jobs like bringing the girls to school or shopping increasingly difficult. Then, she felt a lump beneath her belly button. ‘I couldn’t live with the pain. I was getting private injections and nothing was working,’ she says. In January 2025, Leona called the hospital herself and insisted on being seen. Though reassured by previous scans, she asked to see a consultant. The examination lasted moments. ‘The consultant felt my stomach and said immediately, “We need an urgent CT scan for Leona.’ And again, I knew.” The cancer had returned—this time, stage four. ‘I just cried and cried,’ she says. ‘I couldn’t look at the kids, I kept thinking about everything I was going to miss. They’re two girls, and they’re going to need me.’ The diagnosis marked the darkest point of Leona’s journey. The next phase of treatment would be tougher than anything she had faced before. She was to undergo what’s called quadruple therapy in a desperate bid to shrink her tumours — directly attacking her aggressive cancer with targeted chemo and immunotherapy. Physically and mentally this was her toughest fight yet, leaving her tiny 4 feet 11 inches frame not even six stone; losing all her hair, eyebrows and eyelashes. ‘I didn’t care. I would have given my limbs. You just want to stay on this earth,’ she says. Rather than trying to shield Quin and Drew from what was happening, Leona decided they would face it together. She asked them if they would help her cut and shave her hair before treatment, as she didn’t want them to be shocked by her appearance. Before they did, the girls put two little plaits into her hair — and they still have them. ‘The youngest one cried, but I wanted them involved so my appearance wouldn’t shock them,’ she says. Like every mother, Leona’s thoughts immediately turned to how her daughters would cope. ‘I wondered if the kids would be embarrassed when I collected them from school. I’ve always tried to be honest with them about my life expectancy,’ she says. ‘I tell my eldest I’m not always going to be here. They know what cancer is and that it can result in death, but I keep saying I’m trying my best. I never say everything will be OK because I can’t promise that.’ Her family’s support, especially her daughters’ resilience, has been astounding. ‘Sometimes they just forget Mammy is sick; they’re wrapped up in their own lives. I love that. I want them to forget this happened to me,’ Leona insists. ‘I can’t spend what time I have left being bitter. I want to enjoy being their Mammy.’ She praises Alan, who has been both mammy and daddy. ‘He’s been my husband, my carer, and everything in between. Thank God we’re strong together — cancer can rip relationships apart. ‘I have lost friends through this. People find it hard to deal with it every day. Sometimes I think maybe I remind them of death.’ And while she was fighting for her life — Leona had also taken on a legal battle. In June 2025, herself and Alan settled legal proceedings against the HSE arising from what they said were failures in the CervicalCheck screening programme after smear tests in 2016 and 2020 were reported as negative. Medical experts concluded those abnormalities should have been identified years earlier and that the delay directly resulted in Leona developing cervical cancer. The HSE apologised in the High Court and the case concluded with an undisclosed settlement. For Leona however, the apology was never about compensation — it was about knowing she had been right to question what had happened. ‘I was the only one not crying. I just felt relief because people would know I wasn’t exaggerating. Sometimes my story sounds so unbelievable, I wonder if people think it really happened,’ she says. The quadruple therapy seemed to be managing the tumours, and she had finally got the apology she waited so long for — but any relief was short-lived. On holiday last September, she felt a lump in her abdomen and once more her intuition kicked in. ‘The scan showed the tumour was growing again. Immunotherapy had stopped working. We were running out of road,’ she says.‘I had done everything - every smear, every appointment, asked every question. What more could I have done?’ But in true Leona style, she wasn’t ready to give up just yet. She had been researching clinical trials from around the world and knew that possibly there was one that could offer the one thing she needed most of all, hope. And in October, doctors told Leona about a clinical trial involving a new chemotherapy drug, but getting onto the trial was only the first hurdle. Patients were randomly assigned either the trial drug or standard chemotherapy. She had to make a nearly impossible choice: join the trial and forfeit her last round of radiotherapy, which might have given her a few more months. ‘I had everybody praying,’ she laughs. ‘Lighting candles and begging everyone to help me.’ When the phone rang, she got the best news of her life: she was selected for the trial treatment. ‘I just fell to my knees. It felt like someone saying, ‘Here’s more time, here’s more of your children’s lives,’’ Leona says, adding that the experimental chemo started to help her symptoms almost overnight. ‘The day after the first treatment, I felt the pain reducing. I told them I could feel the tumour getting smaller—I know, because I feel it 100 times a day.’ Scans proved her right—the largest tumour shrank from 4cm to 3cm, and the smaller nodules are stable. Leona now has chemo every two weeks. While nothing is guaranteed, life has become about more than hospital appointments again. The family have just returned from a few days on a boat on the Shannon. Last month all four went to see Katy Perry and, on Monday morning, Quin and Drew will wake up to two new Liverpool jerseys before heading away for a few days with their mum and dad. ‘The worst symptom is mouth sores, so I try to eat when I can to keep my weight up for treatment,’ says Leona. ‘I’m living my life with cancer, but right now it’s a good life,’ she says, still making memories and campaigning for change. Leona believes more cervical screening should be done in Ireland, not sent abroad — more than 83 per cent of CervicalCheck samples were processed in private international laboratories last year — and wants the CervicalCheck audit extended to women like her. CervicalCheck home. We can scrutinise cases and ask questions better here,’ she says. ‘I know we need backup plans, but we should do most screenings in Ireland. Our labs — especially the new one in the Coombe — are capable with proper funding and staff.’ More than anything, she wants women to keep asking questions if something doesn’t feel right. ‘I almost felt embarrassed going back with the same symptoms, but I knew my body. You can question your doctor. Nobody knows your body better than you do,’ Leona says. ‘The best thing I did was question it myself and look into it. I don’t think I would have got answers anywhere else,’ she adds, regarding her decision to seek legal help. Before her own diagnosis, Leona watched Vicky Phelan fight for women affected by the CervicalCheck scandal. She never imagined she’d be speaking out herself, but hopes to continue Vicky’s work in some small way. ‘I could never fill Vicky’s boots,’ she says thoughtfully. ‘But if I do a tiny bit while I still can, maybe I’ll help another woman.’