Wednesday 16 January 2019

'Yes, there's a chance I could die, but we're fighters. And we'll fight this'

After a string of traumatic life events, Vicky Phelan's strength has effected great change, writes Maeve Sheehan

STRENGTH: Vicky Phelan with her husband Jim and children Amelia and Darragh. Photo: Fergal Phillips
STRENGTH: Vicky Phelan with her husband Jim and children Amelia and Darragh. Photo: Fergal Phillips
Maeve Sheehan

Maeve Sheehan

Vicky Phelan's little girl Amelia knows all about survival. She was diagnosed with congenital toxoplasmosis weeks before she was born and four years ago suffered serious injuries in an accidental fire at their home. She is now 12 and doing just fine, according to her mum.

When Vicky read a moving statement on the steps of the Four Courts last week about her terminal cancer and the failure to detect it, she choked back tears as she said she hoped that clinical trials would keep her alive to spend more time with her children. Her powerful words resonated with the nation, with the great and the good, and have already effected political change. But the most poignant impact of Vicky's words was on Amelia.

"Well, we had a conversation only yesterday [Thursday] because she had seen my statement and she got very upset over that, because I was upset. I mean, your children don't like to see you upset," says Vicky.

"'Mammy, you were even talking about you dying,' she said. 'You always said that the papers were only sensationalising...' - I had to explain to her about sensationalism, with all the headlines - '...but you could die'.

"'Yeah, there is a chance that I could die, but me and you, we're both fighters,' I said."

She reminds her daughter of all the things doctors said Amelia would not be able to do when she was small. She says to Amelia: "Has any of that happened? No, it hasn't, so you can't believe everything the doctors tell you. We're both fighters. We'll fight this. I'll go on every treatment I can go on."

After an hour-long conversation with Vicky, it's not hard to see why the judge in her case, Mr Justice Kevin Cross, remarked that if anyone can do it, she can.

She is speaking on the phone from her car in Limerick, where she lives in Annacotty with her husband Jim, Darragh (7) and Amelia. She has picked up a dress to wear on television - she is due on Ray D'Arcy's chat show - and laughs about never normally being one to get "dolled up".

She jokes that she asked: "Who?" when her solicitor told her that Tony O'Brien, director general of the Health Service Executive, had emailed a heartfelt apology on Friday via her solicitor.

She is alternately funny, sad and strident, utterly candid and unremittingly resolute.

The whole country knows that Vicky was wrongly given the all-clear from cervical cancer and has been told she has six months to a year to live. She settled her High Court action against Clinical Pathology Laboratories of Austin, Texas, for €2.5m last week. It later emerged that not only was her smear test result wrong, but CervicalCheck took two years to inform her doctor of what she calls her "misdiagnosis" and a further 15 months elapsed before she herself was told.

Read More: The wrong was so great, her message so powerful - Vicky's story has saved lives

It was always her intention to go public to hold the authorities accountable for what happened, not just to her but to another 14 women identified in the court documents. She railed against the confidentiality clause that Clinical Pathology Laboratories wanted her to sign as part of a settlement of the case.

"There was no way I was shutting up," she says. She had no idea, until the HSE announced it last Thursday, that the number of women who may or may not have been told about their incorrect smear tests was 206.

"I'm relieved that all of this is coming out. The worry I had was the other women who had to be told," she says. "I really do hope that the Minister for Health, Simon Harris, does what he says he is going to do and sends letters out to all of the 206 women so that all of them know about it."

Vicky could not believe it when cancer came to her door. "I never smoked. I'm not a huge drinker. I had always been fairly healthy. I ran marathons. You kind of think: 'Jesus Christ, why am I getting cancer?' It took me a long time to get my head around the fact that I had cancer," she says.

"I suppose, in hindsight, I think a lot of it in my situation was stress - the traumatic event that had happened." I assume she is talking about cancer. But she's not. When I ask her later on, she unfurls three traumatic life events, any one of which alone would fell the strongest and the bravest.

She was in a horrific car accident when she was a 19-year-old student. Vicky, who grew up in Kilkenny, was at the University of Limerick and on a work placement at the time, travelling in a car with colleagues. "There were five of us in the car and two of them died. It was horrendous," she says. "It was a horrible, horrible time and it took me a long time to get over it." Her body was "broken". She spent four months in hospital and many more months on crutches.

Ten years later, she endured an agonising pregnancy with Amelia. She went to a routine check-up at 28 weeks to discover there was something wrong with her baby. It took many more tests before she was diagnosed with congenital toxoplasmosis. Vicky was warned that her baby could be blind and brain damaged. She is fine, thanks to a team of early intervention professionals and the dedication of her parents. Although Amelia is visually impaired, the doctors' dire predictions did not materialise. "That pregnancy really took its toll on me," adds Vicky.

But the worst was to come. In January 2013, Amelia was seven and prancing around in front of the television in a long dress, while her mother made tea in the kitchen. A stray spark escaped from the fire, through the fireguard, and onto the back of Amelia's dress. Amelia, who doesn't have peripheral vision, didn't see the flames taking hold. By the time she realised her dress was on fire, it was too late.

"I was making a cup of tea before she went to bed and all I could see was a fireball coming at me. She was screaming. Oh... I will never forget her screams. That was worse than any cancer, to be honest, having to watch her like that," says Vicky.

"She was in hospital for six weeks. Dressing changes were just horrendous. She had to get very strong painkillers before her dressings were changed. It was awful, and that's all I'll say."

Amelia has recovered but is scarred, and Vicky, it is clear, remains traumatised by that tragic accident to this day. "That was the worst part of our lives really, both myself and Jim, and it put a strain on our marriage because Jim couldn't talk about it.

"When I look back on it now, I believe that accelerated my cancer, because I was very traumatised after that."

Having endured personal hardship of that scale, it is unbearably sad to think that Vicky's life could be very different now had the smear test that she had in 2011, shortly after her son Darragh was born, been reviewed correctly. Instead, she got the all-clear.

By the time she returned for another smear three years later, she was already experiencing symptoms.

"I was bleeding between my periods," she says. She had been "keeping an eye on it" for several months but she worried when she bled after sex. "That really freaked me out, to be honest. I spoke to other women who've had this diagnosis and nearly all of them have told me the same thing: that that was one of the symptoms they had. I think it's important to say it. Some people get embarrassed but unless someone comes out and says this is not normal, if you bleed after sex that's one of the classic symptoms of cervical cancer."

It turned out that Vicky had a substantial tumour of about four centimetres, the size of a golf ball, in her cervix. Further tests showed that the cancer had spread to two lymph nodes. She started a course of gruelling chemotherapy for five weeks. Vicky had no idea that at the same time, in October 2014, she was included by CervicalCheck in a look-back audit of women who had smear tests and went on to have cervical cancer. She had no idea that the auditors reported back that December that the review of her 2011 smear indicated "squamous cell carcinoma" - far from the all-clear she initially received. She had no idea that her doctor was informed about the incorrect smear in 2016.

The first she heard about the audit was in September last year - 15 months later. She was at her doctors for a check-up when he broke the news. "He told me that one of my prior smears in 2011 was reported as normal at the time, but they retested it; there was a query that it may have been cancerous," says Vicky.

She asked him how many women were involved in the audit. "He told me there were 10. I asked him were any women who had been included in this audit - had any of them died? He told me that he knew of three," she says.

"So, I was there in shock to be honest. I thought, Jesus. My mind was going back. So you're telling me that I may have had cancer when I had my son, when I had a small baby at home, that I had cancer, back in 2011, three years before I was actually diagnosed. I could feel myself getting really angry. But I said: 'I'm going to have to park this.'"

It was a year since Amelia's accident, since Laura was plunged into depression, and she had work to worry about and a looming interview for the job that she has now - manager at Waterford Institute of Technology.

Two months later, in November, she received news that her cancer was back with "a vengeance".

"The second time around, I knew I was in a worse position, but I also knew, 'no, I am taking charge of it this time."

Vicky told a friend and her husband but delayed telling her family until after Christmas. But in January, she was told her cancer was terminal and her prognosis was a year with palliative chemotherapy, or up to six months without.

Against this bleak outlook, Vicky's resolve kicked in. She found Cian O'Carroll, her solicitor, and went to court, fighting for answers for herself, for other women and for her family's future.

The case sped through the High Court in record time because of her prognosis - for which she credits her "wonderful" solicitor. Days before her case was settled, her solicitor got discovery of a file of internal documents. The records confirmed her original smear test should have detected the squamous cell carcinoma that later developed into the 10cm tumour that has now invaded her body.

She was shocked to learn that she was one of 15 women whose smear tests had been misread by the US laboratory, and one of 10 in Limerick and the Mid-West. It was also in those files that she found the consultants' letters arguing over who had responsibility for telling women about their inaccurate smear test results.

"And that really pissed me off," she says.

One of the letters questions whether telling the women would be of benefit. "My first thought was who do they think they are to make that decision for me? A lot of clinicians would probably say that wouldn't have made a difference at that point in my treatment," she says. "But for me it would have made a difference. If I had thought: 'Oh my God, I actually don't have cancer since 2014, I actually had cancer since 2011', alarm bells would have started ringing with me and I would have thought this is far more serious. Because we know that it takes between nine and 10 years for this very invasive cancer to develop - so I would have thought I had this for four years but really I actually had it for eight years, so for far longer and much more invasive than I thought I had. I would definitely have been looking for more scans and I would have questioned a lot of my care more. So I definitely would prefer to have been told."

She is critical of CervicalCheck clinical director Dr Grainne Flannelly, who last night stepped down from her role. "I don't think she should be in the position she is in," she says. "She has not explained adequately at all why it took two years for the review. Two years. She didn't answer that question. And a further 15 months to tell me about it."

Another of Vicky's battles over the past two months was to be put on an immunotherapy drug. She started on it last week and is feeling good. "If you're told you're terminal, and especially if you're told you're terminal with 12 months or six months, you would think you'd be sick at home on bed on a morphine drip," she says. Before her cancer, she was a "fitness fanatic" who "ran and ran and ran". Now the pains in her back and down her legs make running impossible. Instead she relaxes by meeting friends, doing reiki, meditation and reflexology. She loves reading and going to the cinema, which she does once a week. "So that's what I do, that's how I keep myself going, you know."

Despite everything, she believes that she still has "choices". "I have been down that road where you go to bed and you don't get up out of bed, and you're depressed. I've been down that road, after Amelia's accident, in particular, before I was diagnosed with cancer the first time. And it was a trauma following her accident," she says, adding that she constantly worries about her daughter.

"But you can't keep doing that to yourself, because you'll make yourself sick for a start, and you just have to learn, I suppose, that you have to take life one day at a time. And that's the way I live my life at the moment."

Sunday Independent

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