Fight for life that turned to fight for justice

THERE was a time Janette Byrne couldn’t bear the thought of people seeing her bald head. Now she has put it on the cover of a book for all to see.

What is inside the covers exposes her even more. There are intimate details of physical suffering, emotional pain and psychological trauma. Even her sex life gets an airing. The bald head is only the start — it is her soul that is laid most bare.

The woman who decided to tell her story in the book, If It Were Just Cancer: A Battle for Dignity and Life, published last month, is articulate, extrovert, passionate, yet collected — the consummate campaigner.

She is a long way from the sick, frightened woman who was once so desperate for help that she phoned Women’s Aid. She was no victim of domestic violence, however. As she saw it, her abuser was State incompetence and inefficiency.

In 2001, Janette, 44, from Finglas in Dublin, was diagnosed with non-Hodgkin’s lymphoma, a cancer of the lymph nodes, after several bouts of unexplained illness left her run down and exhausted. She was running her own catering and hygiene supplies business at the time and the diagnosis was devastating. “We were caught up in a whole whirlwind of terror. We had an aunt who died of cancer at 32, and an uncle who had cancer died in his early 40s. It was like, here we go again,” she recalls.

The diagnosis was only the start of her ordeal. Janette was referred to the Mater Hospital for surgery in February, to be followed by chemotherapy, but when the time came for chemotherapy, there was often no bed available.

By June, Janette had only received sporadic, delayed treatment and was in despair, convinced that the tumour removed from her chest was regrowing with every cancelled appointment.

“It was mental torture. Every day you have to ring to see if there’s a bed there. When you’re told you have cancer but the doctors think they can cure you but you need this treatment in a timely fashion and then told you’re told sorry, you can’t have it, it’s too hard to take. I was trying to be strong but it was very emotional and very upsetting.

“I contacted patient services, the Irish Cancer Society, the Department of Health, but I was stonewalled everywhere. I tried the Ombudsman. I got to the stage I was ringing Women’s Aid. I went through the phone book and said ‘who can help?’ People were very sympathetic but you have enough sympathy from family and friends — you need help.”

Janette was convinced by a friend to contact Joe Duffy’s radio show on RTÉ and her story quickly attracted attention. “I was sitting at home, not a blade of hair on my body, very weak and ill, pouring my heart out on the radio and I was so embarrassed.

“Then I saw the nine o’clock news and there I was with my bandana and my face bloated and I was mortified. You don’t want people to pity you but you can imagine them looking at you and thinking, poor thing.

“I felt very sorry for my family because I knew they were upset and I wondered ‘Am I making things worse?’ But then I just felt it’s my life and I have a right to life and treatment and someone is denying me this.

“I had two tumours in my chest and they were ‘rapid growing’. Those words I kept hearing were resounding in my head. You have too much time in your head when you’re sick like that and it’s very open to negative thoughts if you allow them in.

“All I could think was I didn’t want to be telling my personal details to the world, but you have to stop thinking about what the people in work will think, or what the woman next door thinks. You have to think about yourself.”

Janette’s plight was raised in the Dáil. More sympathy but still no bed. So she decided to go to court. In an unprecedented action, she sought a High Court order directing the Departments of Health and Finance to provide her with the medical treatment she was legally entitled to receive and they were legally bound to provide.

While the case was still being thrashed out, the Mater Private Hospital stepped in and offered her a bed. It wasn’t a fully satisfactory solution but Janette needed her treatment so she accepted.

That should have been the end of Janette Byrne the public figure. But in 2004, she found herself at the Mater again, only this time her mother was the one being made to wait.

Kathleen Byrne had collapsed with a series of mini-strokes and was brought to the hospital’s overcrowded A&E department, where she was left on a trolley.

“Mammy spent five days on a trolley. There was no toilet paper, no soap, no bed, vomit on the floor, blood on the trolley. We had to bring in pillows and blankets from home because there was none.

“I thought, ‘can this really be happening in a major hospital, in a capital city, in a wealthy country where the Taoiseach has his jet and the Luas flies across our streets?’ We seem to be so cosmopolitan and with it, and then people struggle to get a bed in a hospital. It boggled me.”

Gathered around the adjacent trolley, banging elbows with the Byrnes and worrying about their own mother, the Mulreaney family from Ballymun were feeling equally exasperated. A chance conversation spurred the two sets of siblings into action.

“We went home, took the kids from school, rang the aunts and uncles, made placards and stood outside on the North Circular Road with signs saying ‘Get Granny Off A Trolley’ and ‘Beep If You Support Us’. The North Circular is a busy road and suddenly we had the media coming out to us and politicians were on to us and other families came out from the hospital and supported us. We were blown away.”

Patients Together was born and Janette was the obvious choice as spokesperson. “It’s that thing again of not being embarrassed or not caring that maybe my face is on a newspaper or my voice is on the radio. So what, if it makes things better?

“We are still a bit closed in Irish society. We talk about ‘The Big C’. We need to stop talking about things in hushed tones. Silence changes nothing in this world.”

Patients Together has been anything but silent. The group has become a constant, vocal reminder of the hospital beds crisis, the hardship and distress it imposes on some of society’s most vulnerable people and the shambles it makes of the country’s accident and emergency services.

Through protests, continuous lobbying and media appearances, it strives to keep the problem in the public eye and on the political agenda.

Sometimes, Janette admits, it is hard to find the stomach and strength for the task.

“It boggles you, to see what goes on. No matter how many times I visit an A&E, I am still emotionally upset by it. I walk out and cry my eyes out.

“On hot summer days I’d be keeping an eye on the figures and there might be 150 patients on trolleys. I’d see people out walking and the sun shining and have a pang in my heart for patients stuck on trolleys in corridors — no sunlight, no ventilation. It just seems so wrong.”

Patients Together grew out of family concern, and family remain a huge support to Janette. Her partner, Declan, and her son, Graham, 25, are used to the never-ending phone calls and the drawers full of paperwork, and are proud of her efforts.

The group funds its activities from members’ own pockets.

Janette says there have been approaches from all political parties to join their ranks but she has turned them down.

“We have to try and stay neutral and be ordinary people fighting for the rights of ordinary people.” She does, however, wish the public were more political in the purest sense. “What we want from the public is support — their visible presence at protests, their letters to Government, their questions to TDs at the front door.

“It’s very disheartening when people say: ah no, it doesn’t affect me, I have VHI. A&E doesn’t discriminate. People who assume that because they have VHI or Bupa, they’ll be ok, could be in for a nasty shock.”

A rest for Janette would just get in the way of her plans.

“Nothing would have ever changed in life and in this country if some women did not say: ‘I am not taking this crap any more’. Women would not have the vote. Women would not be allowed in pubs!

“We are made of good stuff...God doesn’t make junk. People underestimate the power they have but if we all got together, you never know what we could do.”