Tuesday 12 November 2019

The cost of cancer: 'I went hungry so the kids could eat'

Sonya Byrne: Following cancer diagnosis she went hungry so the kids could eat.
Sonya Byrne: Following cancer diagnosis she went hungry so the kids could eat.
Martin Fox: his income and lifestyle deteriorated drastically after his prostate cancer diagnosis. Photo: Dylan Vaughan.

Ailin Quinlan

After the initial shock of a cancer diagnosis, many sufferers and their families go on to face devastating financial difficulties resulting from loss of income, treatment costs and additional hidden expenses

Imagine seeing your life's savings swallowed, your credit cards maxed out or finding yourself going without food so you can feed the children.

All because you have cancer, a disease which causes not just deep physical suffering, but brings with it a barrage of crippling financial problems.

The average cost of cancer to a patient and their family is more than €800 a month - even for those with a medical card or private health insurance - according to a shocking new nationwide survey commissioned by the Irish Cancer Society.

Read more: Revealed: Cancer is costing sufferers up to €1,200 a month

According to The Real Cost of Cancer, carried out by Millward Brown, additional costs such as travel to and from hospital, hospital car parking charges, extra home heating, childcare, medication and services such as physiotherapy, specialist equipment and even dental care, add to the heavy financial burden.

Martin Fox: his income and lifestyle deteriorated drastically after his prostate cancer diagnosis. Photo: Dylan Vaughan.
Martin Fox: his income and lifestyle deteriorated drastically after his prostate cancer diagnosis. Photo: Dylan Vaughan.

None of this comes as any surprise to taxi driver Martin Fox, whose income and lifestyle deteriorated drastically following the discovery in 2011 that he had prostate cancer.

The self-employed man's family income nose-dived as a result of the two operations which followed his diagnosis.

The first, which took place in 2011, left him out of work for four months.

Subsequent bladder problems meant his eventual return to work was so slow and difficult that a year after the first surgery, the Kilkenny father of two had a second operation, this time on his bladder, which left him unable to work for another three months.

His wife Ann had given up her job to care for him following the first operation, and the financial consequences for the couple were devastating.

Although they were in receipt of some social welfare support, Martin says the amount they were given was just €46 a week - so the couple were forced to rely on financial support from friends and relatives.

"We were depending on loans from family and friends to tide us over," says the 65-year-old, adding that in addition to the fall in household income, the couple had to contend with additional costs.

"We had the cost of transport to and from Dublin.

"The cost of the heating went up because I felt the cold a lot since the operations."

However, they can no longer afford central heating and are now depending on a traditional coal fire: "We cannot afford to replace the boiler which broke down and we can't afford to buy oil anyway.

"Now we buy a bag of coal and some briquettes and try to stretch it as far as possible, but the house is old and cold - it dates from the 1940s."

The savings Martin had squirrelled away for his retirement were quickly swallowed up by the couple's change in circumstances: "All my savings were used up on the living expenses when I was not able to work, plus I had to make the payments on my taxi.

"We maxed out two credit cards during the cancer treatment. I had to take out a loan to cover that, which we are now paying back."

Up to the operation, he says, he and Ann were financially quite comfortable. "We were both working but my wife gave up her job to look after me because I needed 24-hour care after the operation.

"She had to look after me and bring me to appointments at the hospital. She got a carer's allowance for about six months, but that was it."

They are now in receipt of €106 a week in Jobseeker's Allowance, says Martin, who is working a few days a week in preparation for a full-time return to his job.

Sonya Byrne: Following cancer diagnosis she went hungry so the kids could eat.
Sonya Byrne: Following cancer diagnosis she went hungry so the kids could eat.

"Ann is currently looking to re-enter the workforce," he says, adding that he now expects to have to work for an extra 10 years to make up the loss of the savings swallowed by his illness.

One thing which Martin believes would have made life a little easier for the couple, would have been the availability of a website and helpline number offering comprehensive information on the specific entitlements available to cancer patients.

"There's a certain amount of support out there but we found out about it very late.

"I got such a shock at the diagnosis that, initially, I didn't take in the useful information I got about the available supports.

"I think it'd be great to have a central information service for cancer patients where they could go for information, and go again to check they understand it, because when you are given a cancer diagnosis, all the other stuff tends to go over your head.

"You don't initially retain anything except the fact that you have cancer," he says.

For Ballyfermot mother-of-two Sonya Byrne, the news - which came on her 33rd birthday on November 10, 2008 - that she had aggressive, advanced cervical cancer was only the first in a series of major shocks. Up to then, she says, she had been a happy working mum with a steady job and two children.

Now aged 39, Sonya recalls how she had a radical hysterectomy in January 2009.

Six weeks later, she had to have a follow-up procedure. Following both operations she was out of work for a significant period of time and suffered severe financial difficulty.

"I was on sick pay benefit, but it was a reduced income and I couldn't keep up with my rent and my bills.

"I was in and out of hospital," she recalls, adding that in 2011, some months after her return to work, she was diagnosed with lymphoedema.

"I also had clots in my lungs and legs," says Sonya, who has been out of work since. "I have been on different social welfare benefits since then.

"At times, I went hungry so the kids could eat - that's how it was."

At the moment, she says, she's in receipt of invalidity pension and a carer's allowance for her son who has special needs. The allowances are worth a total of €325 a week, which, Sonya says, is not enough to manage on - her 10-year-old son has special needs and her 19-year-old daughter is in college.

She also lost a crucial support network following the deaths of her partner in 2013 and her mother the following year. "The cancer completely disrupted my life financially and I have not recovered. I still owe money for my rent.

"I'm not working at the moment but hope to return to work part time in the future," she says.

RTE’s Miriam O’Callaghan and TV3’s Triona McCarthy have each lost a sister to cancer and will ‘Paint it Pink’ during Breast Cancer Awareness Month. To join the fight against breast cancer this October, visit www.paintitpink.ie
RTE’s Miriam O’Callaghan and TV3’s Triona McCarthy have each lost a sister to cancer and will ‘Paint it Pink’ during Breast Cancer Awareness Month. To join the fight against breast cancer this October, visit www.paintitpink.ie

Such stories are not uncommon among the patients being dealt with by Alison Grainger, senior medical social worker at St James's Hospital.

Cancer causes serious financial problems, warns Grainger, who has worked for several years with both inpatients and outpatients suffering from breast, ovarian and colorectal cancer.

"Cancer would have a major impact on the lives of the average person, primarily through loss of income.

"People can face a reduced income because they are not available for work.

"A lot of people wouldn't have the luxury of job security so that they can become unemployed as a result of cancer.

"Some employees would not even have paid sick leave, which means they'd just be entitled to basic social welfare illness benefit of €188 a week, which would be based on a PRSI contribution.

"I've had patients who have had to go to St Vincent de Paul because they could not afford food," she says.

"If you're self-employed, there's a major bureaucratic process to go through.

"This can be difficult as there's a lot of paperwork plus additional expense involved in getting the right documentation in order to be considered for social welfare support," she says.

"Cancer hits people in terms of income but there are also increased expenses such as medication, and inpatient hospital stays," she says.

Grainger points out that if you don't have a medical card, and do not have health insurance, you'll be subject to a €75 a night overnight charge for hospital to a maximum of 10 nights in the year.

"A lot of people are not aware of that inpatient charge, and people may require admission for surgery or for complications or side effects of the treatment," she says.

Medication costs, transport, car-parking charges and childcare are all additional costs which must be borne, Grainger adds.

"This financial issue is a huge stressor," she says, adding that people become extremely worried about their ability to make mortgage repayment, meet their rent obligations or pay bills.

"In terms of engagement with the social welfare or medical card systems, these are often unfamiliar to patients, and there can be lengthy delays in getting information and in having their details processed."

What supports are available from the state?

There is no simple answer to this question, as there's no standard package of supports or entitlements available to cancer patients.

You may qualify for a range of benefits provided by the State through the Department of Social Protection and through the Health Service Executive (HSE), but those benefits will depend on the personal circumstances and needs of each individual.

To address the many practical and financial questions posed by a cancer diagnosis, the Irish Cancer Society has produced a booklet on the available supports and how to manage the financial impact of a cancer diagnosis.

Managing the Financial Impact of Cancer; A Guide for Patients and their Families addresses a range of issues, including types of health cover, general hospital entitlements, social welfare supports, disability supports, nursing care and living supports, both at home and in hospital.

It also gives advice about tax reliefs, waivers and refunds of medical expenses and how to appeal social welfare decisions, while also providing information for carers, about travel expenses, and tips on how to cope if you find yourself in financial stress.

Discussing your circumstances with a medical social worker in the treating hospital can also help.

More information is available from the ICS cancer nurses by calling the Cancer Nurse-line on freephone 1800 200 700 or through any of the Society's 13 Daffodil Centres across the country.

The booklet can be downloaded from cancer.ie/sites/default/files/content-attachments/managing_financial_impact_web.pdf or made available by calling 01-2310500.

* Call the Cancer Nurseline on freephone 1800 200 700 to talk to a cancer nurse. It's open Monday-Thursday from 9am to 6pm and Friday from 9am to 5pm.

How Irish Cancer Society can help you

* Visit a Daffodil Centre - staffed by cancer nurses and trained volunteers, who provide both practical information and emotional support, these are available in 13 hospitals across the country.

* Cancer treatment often involves much travel for patients and the ICS may be able to help through its Volunteer Driver Service.

∂ If you'd prefer to stay at home when you are very ill an ICS night nurse can stay with you at night time to provide nursing care, practical support and reassurance in your own home.

* If you'd like to talk to someone who has been on your cancer journey, the ICS can arrange that through its Survivor Support programme.

* Free professional counselling is available through ICS-affiliated cancer support centres across Ireland.

* The ICS may be able to help with financial problems. The society provides information on entitlements, advice and also financial support in coping with financial hardship caused by having cancer.

* For more information, call the Cancer Nurseline freephone at 1800 200 700 or go to cancer.ie

Health & Living

Editors Choice

Also in Life