A national study into the financial hardships people incur following a cancer diagnosis, was announced last week. Marese McDonaghtalks to patients about their own experiences
MARY WALSHE remembers bursting into tears outside Dunnes Stores in Waterford one day as she stood with a trolley full of shopping and no money for the taxi fare home.
Euphoria that her social welfare cheque had allowed her to fill the trolley, quickly turned to despair as the unrelenting grind of having to live on a shoestring while her husband battled cancer briefly dented her courage.
Research currently under way by the National Cancer Registry of Ireland (NCRI) is expected to expose a gritty financial reality for many cancer sufferers and their families who find that soon after the initial sickening jolt of the diagnosis comes the added burden of new financial worries.
The findings of a preliminary NCRI study of 21 patients and 21 oncology nurses are stark. Some patients have to take out loans or dip into their savings to cover day-to-day expenses directly as a result of their illness. Prolonged periods out of work mean that childcare, home help, household bills and items such as wigs and dressings place an unbearable burden on reduced family incomes.
The NCRI has now begun a survey of 400 patients throughout the State in an effort to see exactly how widespread the problem is and which categories are most vulnerable. The results will be published before the end of the year.
John McCormack, chief executive of the Irish Cancer Society which funded the study, is acutely aware of the burden money worries place on patients and their families. The society makes payments totalling €450,000 every year to people who struggle with a range of bills such as transport costs, accommodation, childcare, heating, phone and fuel bills and even money for clothes for those who find that their weight fluctuates as a result of treatment.
Payments range from €300 to €1,000 but the society is aware that not every needy case comes within its radar just as a lack of awareness about entitlements and how to access them condemns many people to added stress.
The nightmare for John and Mary Walshe of St John's Park, Waterford began in February 2003 when John, then aged 55 and an employee of Waterford City Council, was diagnosed with bowel cancer. "We went though very dark days," Mary recalled as she remembered how John's condition worsened after surgery and they were told that another operation was needed.
Initially money was the least of their worries as John battled for his life and underwent a gruelling treatment programme involving chemotherapy and radiotherapy.
He was out for work for a year and suddenly Mary, on disability benefit herself because of a hand injury, was facing financial meltdown. The household income was down from €700 to €280 at a time when the Walshes had one daughter doing the Junior Cert and one in college who recently had a baby.
After an initial blind panic of being afraid to open the bills Mary, determined that John should not know how grim things were at home, sought advice from the Money Advice and Budgeting Service (MABS). "They did a budget for me and I had to put €140 in the credit union to pay the rent and the bills and then we had €140 for food and anything else we needed."
When John was attending St Luke's Hospital in Rathgar, Dublin, Mary insisted on giving him €40 out of the €140 every Monday morning as he got on the train to Dublin. "His weight was down to six and a half stone and he was too weak to get the bus from the station to the hospital. The taxi cost €25 - the hospital provided the taxi on Friday evenings when he was on his way home."
Like many cancer sufferers John qualified for a medical card but Mary remembers the cold terror of waiting for a few months for their application to be processed.
"It was tough going, especially at Christmas," she said. She remembers that "sweat poured off me" in the pharmacy when she was told that John's dressings were not covered by the medical card but after a bit of tooing and froing with application forms these costs were also covered.
The family did do without things. "I remember one of the girls asking could she go on a school trip to Belfast which cost €200 and it was the first time we had to say 'no' but she understood," said Mary. "Treats" like hair appointments and make-up were also off the agenda. "You do let yourself go," said Mary. "You feel guilty if you spend money on yourself."
Desperate to build up her husband's strength she struggled to buy food like steaks and salmon for the "bacon and cabbage man" who could no longer eat greens.
Her message to those going through a similar fog of worry is to seek help and take advice from the Irish Cancer Society or the oncology social worker at the hospital.
"John's family and my family were very good to us but you don't like calling on people all the time. The day I came out of Dunnes with my trolley full and no money for a taxi, my sister happened to come along as I was standing there in tears and she couldn't understand why I didn't just ask for help."
John is back at work now and Mary's oldest daughter has a law degree. "The council were very good to him and he has a less physical job now," explained Mary. "The day he did go back I did not owe anybody a shilling," she said.
John McCormack said the results of the national study would be used to inform policy and help the society act as advocates for families "going through a cancer journey".
He said the people left reeling by the financial reality of cancer were often those who never had to depend on social welfare and were too intimidated or too embarrassed to navigate their way around the support system which is there.
While the society already has a helpline to deal with a range of issues, he said he hoped that after the study, someone would be appointed full-time to deal solely with money-related queries.
"This year we have 24,000 people in Ireland with cancer but as our population ages the figure will have jumped to 44,000 in 2020," said Mr McCormack.
He pointed out that for years the society had provided welfare grants and cash assistance to help people meet costs directly related to cancer.
"Older people often have increased fuel bills as they feel the cold and have to leave the heat on all the time," he said. "Self- employed people can suddenly lose their income and we can help with bills. We can also help people pay for wigs, childcare, complementary therapies such as massage and even a short break for people who need it."
Once armed with the results of the study, the society will make a number of recommendations to Government. "We think the Department of Social and Family Affairs should have a presence in each of the designated centres, someone who can sit down with each patient and help them navigate the system," said Mr McCormack.
"Filling out forms can in itself be a chore for elderly people and we think there should be someone on the spot in each centre who can make it easier for people to access their entitlements."
He also wants easier access to community welfare officers for those looking for funding for projects such as house alterations if their mobility is restricted.
Dr Harry Comber, director of the NCRI, is reluctant to draw too many conclusions from the qualitative study which was done between December 2006 to August 2007. But he said the large-scale study of 400 people with bowel, breast, prostate and lung cancer would allow them to draw clear conclusions about the financial implications for patients and their families .
The initial study suggested that groups who are particularly vulnerable to financial hardship as a result of a cancer diagnosis are those with young children, lone parents, self-employed patients, those living alone or in rural areas, elderly patients, those with little family supports, farmers and immigrants.
"When talking about the economics of cancer it is very important to know, not just what the costs are, to the HSE but also the costs to the patients themselves," said Dr Comber.