The patient who lost patience with cancer care
Janette Byrne, founder of lobby group Patients Together, has written a book about her battle with cancer and her experiences on a ward for cancer patients, writes Áine Kerr
Memories of the cancer patient ward, where moments of acute sadness, despair and fleeting occasions of laughter were shared, remain to the fore of one of Ireland's best-known health campaigner's daily thoughts.
It is five years since Janette Byrne emerged from 95 days of chemotherapy. Of the 12 women she came to know in the cancer patient ward, only three are alive today. Every time she speaks of them, she chokes up in tears, both with sadness for their loss and anger at the type of health system in which they suffered.
As the full-time voluntary spokeswoman for lobby group Patients Together, Byrne is something of a celebrity within Ireland's hospital wards. Famed for wanting to "inspire vocal revolution" about the state of Ireland's health care system, she has turned a private journal recounting her battle with cancer and the infinite struggle with the health system into a book in memory of those no longer alive to recount their personal stories.
Her routine life as a business owner and mother changed forever on February 1st, 2001 when she was diagnosed with an aggressive form of non-Hodgkin's lymphoma.
Long before this diagnosis, she knew there was something wrong. "I was sick for a year and half, and constantly going back and forth to doctors," she says.
Following endless antibiotic prescriptions and increased chest pains, she was referred to a clinic in Dublin, which duly referred her to a speech therapist. Adamant that a speech therapist was not the correct recommendation, Byrne chose not to attend.
"Things just got worse and worse. I would constantly have swelling in my neck, but often by the time you'd get an appointment with the doctor, the swelling would have subsided and they couldn't judge the symptoms. Eventually two lumps appeared in my neck," she recalls.
When she awoke one morning to find her face swollen and bloated, her first trials with A&E commenced. The word "chaotic" summarises her experience.
"When they told me I had a tumour which needed to be examined, a lot of what the doctors said just went over my head. I had never thought about cancer before. I'd seen the lumps, but in my mind I just didn't want to go down the cancer route."
With a rapidly growing tumour wrapped around her windpipe, Byrne was moved to a high dependency ward. Within days she entered the cancer patient ward for the first time and met the women with whom she would share some of her darkest and most memorable days. Immediately, problems surfaced.
"The toilet-roll holder was broken, the floor was filthy, there was no soap, the sanitary bin was overflowing and stinking and there were no windows . . . most of us had just had operations and we were all so weak and ill and hated it all so much. Things got so bad that we started taking in scented candles, but the hospital found out and put an end to it."
As Byrne and her fellow cancer patients diligently cleaned everything in their ward with Dettol and took every step to ensure they wouldn't catch an infection, her family wrote endless letters of complaint to the hospital authorities about the poor hygiene. "We were all too aware that one of these bugs could kill us first before the cancer got to us. I finally bore the brunt of it when I got septicaemia . . . it nearly killed me, I was so ill."
But amid the despair and the unexpected setbacks, the group of cancer patients became each other's minders and confidants, particularly when a patient in their ward would die. No counselling was ever offered when a fellow patient died, much to Byrne's annoyance.
It was the second phase of chemotherapy, however, that propelled her to a new forum of rebellion and a high-profile court case.
When it took the hospital nine days and later three days to find a bed to enable her treatment, Byrne began calling politicians, health organisations, campaign groups and RTÉ's Joe Duffy show in an effort to highlight the fact that cancer patients could not access chemotherapy because of a bed shortage.
"It occurred to me then that we, as patients, had a right to life and that there must be some legal clause. I contacted one solicitor after another and none of them would deal with it. One solicitor took up the case and the next time I couldn't get a bed, the court case began the next day."
As the national media rushed to tell her story, the courts ruled that if a bed was not available at the hospital, then they were obliged to pay for Byrne to have chemotherapy at a private hospital.
While she conducted interviews from her ward, fellow patients would advise on points of information and listen to the radio in the hospital corridors.
Finally, in July 2001, when the doctor invited her family to hear the results of her final scan, he could never have expected six family members, her parents, partner and son converging in his small consultation room. Byrne was in remission.
But in April of this year, she suffered a relapse. "My mam does say that I got this [ cancer] for a reason, to do what I do with passion, energy, belief and real emotion. I do tell her I wish they'd just given me a pain in my toe, but she thinks that I wouldn't have fought this battle for other patients if I hadn't felt it so intensely myself."
Having sold her business and found support in a creative writing teacher, Byrne decided to put her experiences and insights on record in the belief that the "pen is the mightier sword".
"Some days I just sat and thought about the girls. I never stop thinking about the girls. There are so many good memories and so many bad.
"It's disgusting how they had to suffer . . . we used to look out at the guys in Mountjoy Prison and envy them because they could go outside and have their cigarette and get some fresh air."
In her work with Patients Together, which she established after her mother endured the A&E trolley treatment, Byrne speaks continually of the "epidemic of helplessness" and the failures of the health system.
Having earned the nickname of "The Rise a Row" as a cancer patient, her new book If it were just cancer: A battle for dignity and life can only serve to continue her role as someone determined to highlight the experiences of patients and their families in Ireland's hospitals.