'There were days I could not pay the parking fees in hospital' - The cost of terminal cancer
When Avril Campbell’s husband was diagnosed with cancer, the family went from financial comfort to being on the breadline, relying on the generosity of friends and relatives to pay the bills. Arlene Harris looks at the monetary toll of serious illness
There is little more devastating than the diagnosis of a potentially terminal illness — the destruction it wreaks on the physical and mental wellbeing of both the patient and their family is hard to quantify.
And there is another aspect which is often overlooked — the financial reality of trying to keep bills paid when the main family breadwinner can no longer work.
Last month the Irish Cancer Society revealed the results of a report entitled ‘The Real Cost of Cancer’ which demonstrated the struggles faced by people going through the disease — some experienced drastically reduced incomes, others struggled to pay their household bills, while many were reduced to living on welfare or relying on the kindness of family and friends.
Avril Campbell is just one member of our society who knows first-hand how incredibly difficult life can be when struggling to cope with a life limiting illness.
In 2014, her husband Eugene, an otherwise fit and healthy man aged just 48, was diagnosed with blood cancer, and their entire world fell apart.
“Eugene never smoked, was a pioneer all his life and was always very active,” says Avril, who has three children (Aoife, Matthew and Kevin). “A proud Tyrone man, he was very involved with his local community and people turned to him for help whenever they needed something fixed or wanted to borrow some tools.
“He was a very burly, strong man so when he complained of an unbearable pain in his stomach at the beginning of January 2014, I thought he was probably passing a kidney stone as he was rolling around on the floor with the pain and usually he would be able to withstand pretty much any kind of pain or discomfort.”
Avril rushed Eugene, a carpenter, to their local hospital in Dublin and after several tests it was discovered that he had CLL (Chronic Lymphocytic Leukaemia) and would need immediate treatment.
“Hearing the news was like being hit by a tsunami — we were both shocked,” she says. “I was utterly devastated, particularly when we discovered that his whole pelvic area was filled with tumours. He had the worst form of CLL and needed to begin treatment straight away with three bouts of chemotherapy before starting a trial drug.
“It was a very difficult time for him, but he never complained and continued working until August 2015 when he just couldn’t go on anymore. He fought it for so long as he was a proud man and wanted to be able to provide for me and the kids, but he just wasn’t physically able for it.
“Then in November of that year, he was due to have a bone marrow transplant but needed five days of chemo beforehand. This took its toll on him and on the third day he collapsed and ended up having emergency surgery to have his spleen removed. The transplant was put off until the following month — and not long after, he became wheelchair-bound.”
Eugene was in a very bad way physically so Avril, who ran her own catering company, had to give up her job to look after him — so they had suddenly become reliant on social welfare and were practically destitute.
“Eugene was on sickness benefit, which included €54 weekly for his spouse, and because of this I was only allowed to have half of the full-time carer’s allowance — €104 — so we had to live on a combined total of €323.30 to cover mortgage, heating, food, petrol and the awful cost of parking at the hospital,” she says.
“Some days Eugene would be there for the entire day and I wouldn’t be able to pay for the parking; once I was €2 short and the parking attendant wouldn’t let me leave as I couldn’t pay for the ticket. It was really awful because no matter how close you are to someone, even your best friend, it’s so hard to say you can’t afford petrol or the price of a parking ticket.”
Eugene and Avril had taken a cut of over €50,000 a year and they had a two-year wait before qualifying for a medical card. But while she tried to hide the reality of their financial strain from friends, people began to realise and did all they could to help.
“My brother Alan is my rock — our mother died when we were teenagers and our father had Alzheimer’s at the time, so we always relied on each other — but I didn’t even want to tell him how bad things were,” she says.
“I took in students to try and pay the mortgage and that was quite horrific as we were going through such a hard time.
Eugene became diabetic and also lost his eyesight and on top of that he was in incredible pain every day, so having to worry about lodgers was very difficult.
“I would dread meeting people if I was out shopping because I was constantly counting and trying to figure out what I could buy with the money we had. This was particularly difficult as Eugene needed good food, but only the junk food is reduced in the supermarkets.
“Although I tried not to let people see how hard things were, our friends and family could see and did everything they could for us.
“Sometimes after people visited, I would get a text saying they had left an envelope (with money inside) on the bathroom shelf or in the kitchen, and so many people left food, firewood and groceries on the doorstep (to this day, I don’t know who half of the stuff was from), and someone even taped a Smyths voucher to the door so we could get some Christmas gifts for Kevin who was 11 at the time.
“Eugene’s work colleagues also fundraised each Christmas (while he was ill) and whatever amount they raised the boss would match it. And I remember once, a group of his friends from the village of Clady turned up to see him – they went upstairs and sat on the bed chatting and then when they left, slipped him an envelope with €1,000 in it. It was just incredible how kind people were.”
After four years of suffering, Eugene passed away in August 2018 at the age of 52. Avril and the children are still reeling, and she is attempting to get back on her feet financially. But despite the hardship the family suffered, the Dublin woman says the experience they endured while her husband was critically ill highlighted one crucial truth: that most people are extremely kind.
“Eugene went through a really horrific time, but he never complained,” she says. “Even when he was crippled with pain, had lost his sight and mobility, he still maintained that there were other people worse off then us. Of course he was right, but it just goes to show what sort of a man he was.
“I tried to shield him from the worst of our financial problems as he would have been devastated if he knew how hard we were struggling — so I would always leave €10 or €20 in his pocket so if he needed to pay the milkman or someone else, he would find money there.
“I also used to bake buns to cheer him up (sometimes my friends would give me the ingredients) as the smell of baking made him feel happy and prosperous — it’s the little things which make the difference.
“And this also goes for what others did for us — everyone we knew tried to help in some way and it proved to me that people are beautiful. I’m not exaggerating when I say this — I believe most people are kind and good and do what they can to help others through life.”
Having experienced the financial and emotional trauma of cancer, Avril urges others to do what they can to help people in similar situations.
“Cancer is crippling in so many ways, particularly if the main bread-winner is sick,” she says. “If anyone knows someone in this situation they should reach out to them if possible — even if they just want to leave something like briquettes or firewood on the doorstep, drop a casserole or even a cake around whenever they get the chance; these little things make such a huge difference.
“But official help needs to be given also. The parking fees in hospitals are horrendous,
particularly if, like us, you have to be there for entire days at a time.
“Also we shouldn’t have to wait for years for a medical card, and only getting half a carer’s allowance is dreadful — I spent many days crying on the phone to health officials, pleading for help as I couldn’t afford the medicine and creams Eugene needed.
“This sort of stuff needs to be addressed, fast — we are not looking for blood, we’re just looking for a means of coping.”