By Alison O’reilly,Irishexaminer.com

Copyright irishexaminer

She had explained to her girls Quin, aged 8, and Drew, aged 6, that “mammy was losing her hair because of the medicine she had to take’” and she needed help shaving it off.

Understandably upset at first, the girls then had fun as they plaited the longer parts of their mother’s hair with her help, before chopping them off with scissors.

“And then we shaved it together and Alan helped smooth it out,” said Leona, who is a hairdresser by profession. “It was actually a really funny moment and we were all having a good laugh doing it, I just wanted to help them not to feel afraid.”

This is one of the happier memories Leona is determined to create for her children while she battles stage 4 cancer. Up until her diagnoses in 2023, following two misdiagnosed smear tests in 2016 and 2020, Leona said she enjoyed the “perfect life”.

“Alan and I had such a great life, we had it all, two perfect kids and a lovely set-up at home, next door to his mother and sister in Dublin,” said Leona, who is originally from Fairhill in Cork.

“Anyone who knows us knows the way we are – and knows how grateful I felt for living this lovely life.

“Alan and I, we met when we were young and we hadn’t a penny, we just loved going out and having fun with our friends. I don’t know how we got a mortgage, but we made it work.

“When people say you just know, well we knew, we just clicked, and we just got on so well and just had a laugh. We were so young. And I was like, with no kids, what’s stopping me moving to Dublin, so I just moved up.”

Leona’s content continued when she became a wife and mother.

“Then we got married and had the girls, and I loved it. My two pregnancies were perfect, and I worked around the girls and really focused on my quality of life.

“I can’t even express how content I was in my life. I didn’t want anything else. I love being a mom and doing things with my girls and Alan, then this happened.

The bubble burst and it was like, OK, that’s what our thing is going to be, it’s cancer, so now I just try and get through it.

“It does make me angry and upset for my kids,” Leona says. “I am not afraid of dying, but I am afraid of the damage it will do to my children and memories it creates in their childhood watching me being sick.

“I never had to see that with my mam. You only have one mother, nobody loves you like your mother and that’s what upsets me, it’s worrying about the children because your childhood stays with you forever.”

In June, Leona’s story made headlines after the Health Service Executive apologised in the High Court to her and her family for her misdiagnosed smear results in 2016 and 2020.

A letter of apology from the chief executive of the National Screening Service, Fiona Murphy, said on behalf of the service and the HSE it wished to apologise to Leona, and her family “for the failings that have occurred and led to your diagnosis”.

The case was fast-tracked through the courts system because of the urgency of Leona’s diagnosis. She also received an undisclosed settlement.

Looking back, Leona said: “When I see myself in court, I was going through chemo, I had no hair no eyebrows, I was about six stone, I never really realised how sick I was until I look back. I didn’t realise it in the moment”.

Leona recalls how she had to talk to her family and explain they were going to hear things in court that was going to upset them.

“It was difficult for them, they see me just getting on with it, but when you hear about the situation in court, in that environment it suddenly becomes so serious.

“I was a bit overwhelmed myself when I came out of court and the reaction to it. I have all the papers; I have the apology. I have loads of little bits that I hope my girls get to a stage where they’re like, oh my god, my mom has done this.

“The settlement also means we can go to the US for treatment if we want to, but really, you look at it and say, ‘is that what my life is worth?’”

Her counsel, Jeremy Maher SC instructed by Cian O’Carroll solicitors, told the High Court it was a truly tragic case. He said Ms Macken has now a limited life expectancy and “what should have been stopped in its tracks was not.”

Leona’s second smear was conducted after the CervicalCheck scandal broke in 2018 following Vicky Phelan’s landmark court case. A review found that 221 women with cervical cancer had not been informed that their cancer had been misdiagnosed.

Misdiagnosed smear results

During this time Leona went through two healthy pregnancies, unaware that abnormal cells in her cervix were developing.

Leona says that from 2020-2023 she knew she was unwell; she had all the symptoms of cervical cancer, including discharge, pelvic pain. But despite all the scrutiny around the testing process, she struggled to get doctors to take her concerns seriously.

“Nobody said ‘maybe your smear is wrong, and we’ll do it again’. I did everything I could to be well in my life, I did all my smears and looked after myself,” she explains.

“I began to think people just thought I was complaining about nothing, but I knew something was not right.

“There was discharge and I was in a lot of pain, my cycle was off, I was always getting what I thought was thrush. I had an ultrasound and that came back fine too. I was getting to the stage where I felt embarrassed going to the doctor all the time.

“Then I had unexplained bleeding, and I just knew no way this is right. I kept going back to my doctor.”

Another smear test was done in 2023, and Leona was diagnosed with stage one cancer. She underwent surgery to remove all of her reproductive system, but even after all that she knew that things were not right.

“I was in pain and going through so much, but the doctors were telling me I was well, but I couldn’t even stand in a queue because of the pain I was in.

“I was referred to the pain clinic, I thought, well, maybe this will work if I get the pain injections, this is the answer to it, you know? But nothing changed.”

When further tests in January uncovered a tumour, Leona said she felt “relief” rather than distress. She has now been diagnosed with stage 4 cancer.

“I knew I wasn’t going mad and there was a reason for my pain,” she said. “In Ireland we are just so limited in our treatments and most of the time it is me telling the doctors that I know something is wrong and pushing them to listen.”

Life with cancer

While Leona’s chemotherapy treatment has finished, she still undergoes immunotherapy every three weeks, which will continue until next year, but says she can “never switch off”.

“Before I eat anything I always ask myself, ‘what will this do for me, will it be good in the long run?’, you can’t help it you are trying to do everything right,” she said.

She is also in touch with several hospitals abroad about alternative treatments. “You are always researching, and I feel in Ireland there is so much treatment we don’t do, and we are looking at other options.”

Leona says her cancer also means her role in her family has changed.

“I was the mammy. I had my part-time hairdressing job, I was always so independent, and I wanted the girls to see me like that. I was happy in my job, I loved it, I had beautiful work and a balance of home life. And then that was just all gone.”

She has asked to meet the health minister Jennifer Carroll MacNeill to help highlight issues she would like to see changed for women.

“I want to talk to her about the audit [CervicalCheck Clinical Audit] and to reopen that.”

Leona says since her smear test in 2016 missed the presence of abnormal cells, she would like the audit to be extended to include women like her.

“I would like to shine a light on this again and help make changes to the system for other women going through this because I do feel we are very behind and it’s not good enough, women deserve better, and we know our own bodies.”