Vicky In her Own words
You may think you know Vicky Phelan’s story but what happens when she closes her front door?
Norah Casey reviews a new documentary which offers an intimate glimpse into her life since she was given just one year to live back in 2018 and the terrible roller coaster of her journey to pursue change and raise awareness while tirelessly campaigning and advocating for women’s health.
Vicky Phelan told me once that she was just an ordinary woman who was forced to take on the mantle of leadership and advocacy through the injustice of what happened to her and the realisation she was not alone. But for me, the woman who changed Ireland and captured the hearts of a nation is extraordinary in so many ways. Once she found her platform, she began to use her power to ignite the power of others.
She stood up and spoke out for those who didn’t have a voice - all of the women dead before their time, the children and partners whose lives were changed forever, and so many more going through treatment and side effects they might never have needed.
She took that power. She didn’t wait for someone to offer it to her. Her faith at all times has been her unfaltering belief that she will overcome (no surprise the title of her memoir is Overcoming).
In the words of Nora Ephron, she is definitely the “heroine of her own life and not the victim”.
In the film, Vicky, she talks openly about some dark and difficult events in her life which may well have laid the groundwork for that leading role. She has a brilliant mind, analytical and curious – honed by her academic career. She is fiercely determined while being a vessel of compassion for her fellow sufferers. Then there is the purity of her message and her ability to stir others with her words. And nothing sounds as good as the truth.
I have heard her speak loudly and with passion and sometimes softly and tearfully. Vicky, the film, captures her in all those ways, her spirit and the essence of what makes her extraordinary.
BEHIND THE SCENES
This film was her passion project, in partnership with director Sasha King. It’s her story and an intimate glimpse into her world as some tumultuous events unfolded during the past four years. There are magical moments of love and joy with her children, Amelia and Darragh, and lonely anxious moments on her medical journey. Her own phone videos during some terrible times are heartbreaking, her pallid face and wavering voice talking to us just before receiving news of her tumour that could have devastating consequences for her treatment. And all the while there is wave after wave of terrible news about the women, fellow travellers she grew close to on the cervical cancer journey. She pours her heart into those videos, just her and her phone often alone in the car at the end of a long journey for treatment.
We are bystanders to her tears and upset in the immediate aftermath of receiving a call about Julie O’Reilly’s stroke and subsequent death on October 6, 2018. Then the following day the terrible news that fellow campaigner and mother of five, Emma Mhic Mhathúna had passed away. And just two years later the tragic death of Ruth Morrissey who endured 36 days in the high court while terminally ill, as the HSE and the US laboratories fought her tooth and nail. Even when she won her case the state dragged her to the Supreme Court on appeal. The decision was upheld. Vicky’s solicitor, a hero in all this, Cian O'Carroll, subsequently represented Ruth and slammed the terrible ordeal forced upon her as deathbed litigation.
The film brings a context to the story most only know through the lens of the media. Vicky faced a huge limitation of her life with the realisation that it could have been prevented, a travesty that was further compounded by the double injustice of what the HSE and the two laboratories put her through in the courts. She was the first, but sadly not the only, woman in the CervicalCheck debacle that faced that courtroom ordeal.
Back in 2011, if the cancer cells had been detected, Vicky would be leading a full life. Instead she is now undergoing palliative care. She has, so far, been given more years than her prognosis back in 2018, which was six months to a year. Incredibly and thankfully she is still with us.
And during that time while she was trying to save herself, she was saving so many others.
TAKING CONTROL
While we were getting to know about Vicky’s legal fight on the steps of the courts four years ago, behind the scene she was battling severe side effects of her first Pembro (Pembrolizumab) infusion, a drug she had to relentlessly fight for once she realised it was her only hope.
Subsequently she fought for all women, who could benefit from Pembro, to have access to it.
But her story goes back further to when she was told her cancer had returned and there were no options available to her other than palliative care.
“I’m taking back control,” she tells the camera at that time, revealing that her experience up to that point had unsettled her faith in doctors always ‘knowing best’.
Taking control of her own treatment was literally a matter of life or death, she says. That kernel of mistrust in her medical care and her suspicion that other women might also have had their slides misread lit a spark in Vicky.
She retrieved all of her medical files and one day while waiting for a biopsy she started leafing through the notes and found this one sheet of paper – she holds it up for the camera. She reads it again and again. It reveals starkly that when she was diagnosed initially in 2014 following a cervical smear test, it sparked an audit into the previous smear in 2011. The result of that review is there in black and white - cancer cells were present and missed. In the film we hear from an expert who reviews that slide from 2011. It was incomprehensible, he says, as to how the cancer cells - which were ‘plentiful’ - could have been missed. But Vicky also spots that the page is one of two pages and the other one is missing. Who was it sent to? Who knew and when did they know? She has to fight all the way to the courts to find the truth.
FACING THE COURTROOM
There is some hope that her case could be settled through mediation.
She tells us that on that day there were three rooms. Her and her lawyers in one, the HSE in another and the two laboratories in the third. The mediator was going from one room to the other trying to find a settlement. ‑ e log jam was due to one crucial issue - she refused to sign a non-disclosure agreement.
They (the lawyers for the other side) knew I was very ill during those long hours of negotiations, she says, and they hoped I would buckle under the pressure. She was in pain, couldn’t sit for long and had to lie down at times.
And still they tried to push her to sign.
“I knew at that point that there were other women who were in the same boat as me... clueless,” she says. That realisation, that this was not just her story, changed everything for Vicky. She didn’t know how many or the shocking extent of the debacle. She jeopardised her own settlement and her health to stand with those women - as yet unknown. That is true heroism.
What courage it took to get herself into that courtroom to tell her story with such brutal honesty. She tells us she almost didn’t make it. The physical and emotional toll of sharing such intimate and devastating aspects of her life while so ill is etched on her face as she relives it. Like women who came after her, it was only Vicky, the seriously sick woman at the centre of this atrocity, who had to stand in court and bare her soul. ‑ e HSE and the laboratories involved dodged the stand by settling, but only after they put her through that ordeal.
“My reason for blowing the lid on the CervicalCheck scandal was to ensure that my daughter inherits a healthcare system that won’t fail her as it did me,” she has explained in the past.
She is that fearless warrior who became a champion for women but she’s also a mother, sister and daughter, whose life has been cruelly limited. How she found that steel to rise from the devastation of her prognosis to become one of the most incredible catalysts for change in Ireland is almost incomprehensible – but she did.
Over the past decade some 221 women in Ireland were impacted by smear test readings that missed abnormalities. Those women, their families, all of us women and our girls are better off because of her brave stance. But what a price to pay.