Vicky Phelan seemed hard-wired to do the right thing

I first met Vicky Phelan at a hotel near Heuston station in 2018. Not long after that, we set about piecing together the story of her life, to commit it to paper in her memoir. And what a story she had to tell. At that point, she didn’t know how much time she had left. She had been given a year to live. We needed to move quickly, and so we did.

As with all stories, there is a beginning, a middle and an end. Vicky’s beginnings were very happy times – growing up in a loving family with her mother Gaby, her father John, her brothers Robbie, Lee and Jonnie, and her sister Lyndsey. Her first home was near the banks of the river Suir. Her father was a fisherman, practising the old traditional snap net fishing. As a family, their lives revolved around the fishing season.

From a very young age she had a natural curiosity. From her perch on the windowsill in her home, she’d watch the older children going to school. She longed to join them. And so, at the ripe old age of three and a half, she decided to take matters into her own hands. She convinced her mother to bring her to the principal’s office, where she jumped up on to a chair and began to read to him. He decided to enrol her there and then, and so her relationship with learning began. From that day forward, education would play a very important role in Vicky’s life. She believed fervently in its power and it would stand to her years later when she began researching treatment options after her diagnosis.

Her children were what sustained her, kept her fighting to stay alive, and yet, here she was living on the other side of the world, without them

The middle of her life brought various challenges. Vicky spent some of her teenage years visiting France as she loved languages. While there she was in a serious car crash. She was lucky to survive and had to teach herself to walk again. Although she was just a teenager at this point, she made a decision that seemed far beyond her years. Once she was well enough, after her recovery in Ireland, she made the decision to go back to France to try to find the fireman who saved her life, to thank him for what he had done. Even at this young age, Vicky seemed hard-wired to do the right thing.

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[ Vicky Phelan obituary: A courageous advocate who gave a voice to Irish women suffering in silence ]

The latter years of her life are the story we all now know – that of her cancer diagnosis, and her bravery in standing up to the system which had so brutally failed so many women, including herself. The image of Vicky outside the courts, the day she won the settlement against Clinical Pathology Laboratories, will be etched in our minds forever. They wanted to silence her, to keep her quiet for a lofty sum. That would have been the easy thing to do. But it wasn’t the Vicky thing to do. She refused to sign the confidentiality agreement. She knew there were other women out there who had also been failed by CervicalCheck. She wanted to speak out so that the truth would be heard and some kind of justice might follow for those women too. So that something like this could never happen again.

As writers we look for the patterns in things – the threads that weave through a story, the motivations that drive people, and make up the hero’s journey. From the outset of our conversations, it was immediately clear that Vicky’s children were undoubtedly that essential thread. Everything she did in life, she did for Amelia and Darragh. She wanted to ensure they would grow up in a country where the system wouldn’t fail them, where they could make informed decisions about their healthcare, where truth and justice mattered. Where women’s lives mattered. But most of all, she wanted her children to have their mum, for as long as possible. That is what drove her. They were the heartbeat to it all. Her reason for living. There was no question about that.

Her eyes would light up at the mention of her family – the rocks in her life – her mum and dad who were always by her side, her brothers and sister, her husband Jim and her close friends.

There was a kindness and pureness to her that everybody loved, which was immediately apparent from the moment you met her

In more recent times, life had taken another unusual turn, when during the pandemic Vicky took the decision to travel to the United States for treatment. She got on that plane, not knowing if she would ever come back – if she would ever see her family again. We continued to speak over the phone while Vicky was there. It was the lowest I had ever seen her. Her children were what sustained her, kept her fighting to stay alive, and yet, here she was living on the other side of the world, without them – watching tumours grow and shrink, while the sand continued to slip through the hourglass. Precious time slipping away, but all in the hope that somehow this trial, this treatment, might grant her a little more time with them when she returned.

[ Vicky Phelan: Even heroes need to rest ]

When we spoke, she talked of the friends she had made in US, people she had met, who were drawn to Vicky in that same way that we all were. There was a kindness and pureness to her that everybody loved, which was immediately apparent from the moment you met her. She was so impressive too in her intellect and her ability to do the seemingly impossible, all with a can-do, positive outlook, no matter what she was going through.

No sooner had she landed in the US than it seemed there were people reaching out to connect with her, mostly Irish people living in the US. They wanted to help her with the grocery shop and give her lifts to her treatments. Nonetheless, life was lonely there, in an apartment so far from home. As much as she appreciated deeply the kindness of strangers, it also served to remind her of what she was missing. It’s your family usually that you do this with, she said. Meanwhile, the messages from Ireland continued to flood in, willing her on, keeping her company, championing her.

As time goes on I know I will always wonder what Vicky would have said or thought about something. It seems impossible to think that she won’t be here to say it

This mattered to her. In recent months, one thing we spoke about a lot was a way for Vicky to say thank you to the Irish people. It’s what she wanted. She shared how much the messages from people meant to her. They kept her buoyant, hopeful. Maybe even kept her alive. Vicky Phelan stood up for the people of Ireland, for the women of Ireland, and when she needed it most, in her darkest hours, the Irish people stood up to the plate and were there for her too. She knew that, and she felt it.

Vicky knew how much those messages of hope helped her family too. She would often say how her father John would get in touch with a gentle nudge for her to post something on social media if she had been quiet for a while. She could see the strength he took from the community that grew around them as a family – the goodwill which emanated from all across the land.

[ The Irish Times view on Vicky Phelan’s legacy: a life that left an indelible mark ]

Vicky sometimes showed me messages that would arrive in her inbox – many every day, in most cases from people who had never met her but wanted to connect. They sent photos of their garden roses, or excerpts of songs they were learning on the guitar that they hoped to play for her one day, poems written just for her or notes about a prayer said and a candle lit. Somehow the message would arrive at just the moment when she needed it most. When she was feeling very sick, she would go to her inbox and seek them out. They would remind her of all there was to live for. And perhaps in some way it was her story that reawakened in all of us that sense of what it is to be alive. It reminded us of how special life is and how lucky we are to be here. And she did it through her honesty but also through her love of life – Vicky inevitably found the fun in things.

What can you do when there’s nothing you can do? You pour love into the moments, because at the end of the day that’s what matters

As time goes on I know I will always wonder what Vicky would have said or thought about something. It seems impossible to think that she won’t be here to say it. A chasm now exists – a void that she so beautifully filled. What began with a courageous move to blow the whistle on a scandal over time turned into something else – something we didn’t even know we needed as a country. We needed to talk. Vicky opened up essential conversations. She showed us how to have the courage to talk about things that matter. For all of us, it was cathartic.

And she was refreshingly down to earth in her openness. Vicky would tell you she had constipation, or that she’d had her head over the toilet bowl all morning. She talked about it because it was her reality. More often than not when it comes to cancer, this suffering happens quietly, behind closed doors, people and families exhausted from the relentless symptoms and side effects. She talked about facing death, about living life. It was real, raw, palpable.

When I first met Vicky, my own father was going through palliative cancer treatment. From the beginning she said she felt as though I understood, in some way, what they as a family were going through, because we were going through it too. My entire life, I had spoken to my dad about everything, but then, when it came to cancer, suddenly we found it hard to find the words. Because there isn’t a language for this kind of thing. For facing the inevitability of death. It’s too much to bear. It felt impossible to talk about what was really happening to us all – how helpless we felt in the face of it. Cancer can be lonely. It can be beyond tough.

[ Taoiseach pledges passage of ‘full disclosure’ Patient Safety Bill by year end amid tributes to Vicky Phelan ]

[ Death of Vicky Phelan throws into focus Government inaction on key promises ]

But it also wakes you up to the fragility of life – its beauty, and how lucky we are to live and breathe it, every day. What can you do when there’s nothing you can do? You pour love into the moments, because at the end of the day that’s what matters. And you live with all your might, because time is precious. And that is what Vicky did. That is what she reminded us all to do.

Some 45,000 people are diagnosed with cancer every year in Ireland. There isn’t a family in the country that isn’t affected in some way by cancer. A figure on the NHS website says that in the UK one-in-two people will be diagnosed with some kind of cancer in their lifetime. And yet we find it so difficult to talk about.

For someone who didn’t have much time left, she somehow managed to make time, for everyone

Sometimes we shy away from talking about things, because of the worry of saying the wrong thing, or in the wrong tone, or at the wrong time. Perhaps best to say nothing at all. And perhaps that is something we should take from Vicky – have the courage to connect. Lean into it, not out. Send that text, write that uplifting poem for someone in your life, or tell them a funny story to make them laugh. Because they are in it – they are in the thick of it. And we should be there with them – cheering them on – through the treatments, these champions. There is a kind of power that emerges when someone is facing cancer – a light that shines through them – a hope and strength garnered from some place within, but no one can do it alone.

[ Vicky Phelan: She didn’t want accolades or broken promises. Just action and change ]

So perhaps one thing we can all do for Vicky, in her memory, is not to let the conversation stop. Vicky started something, she filled our lives with her incredible energy and strength of spirit like only she could. For someone who didn’t have much time left, she somehow managed to make time, for everyone. Unbeknown to most people, she would quietly work away on the difficult administration that comes with research – as many people contacted her looking for help to find other treatment options for their cancer. In the depths of her own treatment, she would ask me about my kids; or send a voice note or a message. I’ve been looking at those messages lately thinking how surreal it is that we will never hear from her again. It doesn’t seem real. She seemed invincible. Capable of defying even the inevitable.

Some years ago, when we were imagining how her story might end, she said her spirit was in Doonbeg, in the waters that crash along the shore – the place she loved to be with her family

It is only in these past few difficult days that we now know how the story of Vicky’s life ends. Though I can only hope and trust that this is not the end of Vicky’s story. Her legacy and work, the incredible energy she exuded, the way she touched so many lives – that will and must live on. My life was changed by knowing Vicky, and I know this is true for countless others.

When I heard that Vicky had passed away, I went to the sea. It’s where I thought I might find her.

Some years ago, when we were imagining how her story might end, she said her spirit was in Doonbeg, in the waters that crash along the shore – the place she loved to be with her family.

[ Vicky Phelan: Whistleblower and outstanding patient advocate ]

As the sun was setting that evening, on her last day on earth, I thought back to those words:

“I look back at my footprints in the sand. Tomorrow the sea will have washed them away. Ready for new footprints to take their place, to make their mark in the sand. I think of my promise to Amelia that night. A promise I keep every day. To be here as long as I can.

“Though recently I feel that black horse chasing me again, getting ever closer. I can hear the clip clop of his hooves, the tick tock of the clock as each sacred day passes by. Every sunrise, every sunset, every blessed day. They all count. Every one.

“And I know that the day will come that is my last day. My last sunrise, my last sunset.

“And then I will be at peace. My ashes will be scattered in the water, on the silver sands of the beach at Doughmore.

“And I will become part of the sea once more.

“Part of the wild Atlantic Ocean…where only the white horses can catch me.”

Naomi Linehan and Vicky Phelan co-wrote Phelan’s memoir Overcoming