The cost of living with cancer - 'It ripped my life apart'

Surviving cancer is the new normal. But cancer patients face an increased cost of living, and the finance world hasn’t caught up with the prognosis
The cost of living with cancer - 'It ripped my life apart'

Katie Boylan on her cancer: "My surgeon said it was one of the worst cases he’s ever seen so I know how lucky I am to be alive." Photo: Moya Nolan

Almost 45,000 people in Ireland get cancer each year. There will be a diagnosis every three minutes and every hour a person will die from cancer. But, there are now more and more people surviving the disease.

Survival rates of cancers vary hugely, but there are more than 190,000 people living with and beyond cancer today in Ireland.

While our cancer conversations focus on the illness and the treatment, far more than the person's health is affected, with everything from housing to heating bills being impacted by a diagnosis.

We talk to three people who survived cancer as well as organisations who help people when their entire lives have been impacted by the disease.

In today's special feature:

  • Nicky Donnelly: 'Childcare was our biggest issue' - The trained midwife and "stay-at-home mum" found a lump in her breast the day after schools closed at the start of the pandemic. Childcare difficulties subsequently added another difficulty to her hair loss, medical menopause and chemotherapy.
  • Katie Boylan: 'The financial impact of cancer has meant I'm still living with my parents and I’m 40' - The Dubliner found out she had a tumour two days after her 35th birthday when she had already moved to her parents to save "for a year" for a house. Now, cancer has affected her plans for work, savings, housing and her overall life.
  • Vicki McGrath: 'I definitely think it was my mental health that's been most affected' - Vicki found a lump on her breast at an airport terminal returning from a holiday. While her life is not the same, counselling and a change of scene is helping with her mental health.

Money matters: Cancer patients can't afford to heat their homes

St Vincent de Paul (SVP) told the Irish Examiner it has received 1,400 requests for help since 2019, from people struggling financially because of a cancer diagnosis, unable to cover heating bills for their homes or transport costs for treatment.

"This is likely to underestimate the true need as requests may be taken locally or someone may request help initially with food or fuel and it will emerge during the visit by SVP members that a cancer diagnosis within the household is causing the financial difficulties," Rose McGowan, national president said.

Ms McGowan said that a loss of income, due to being out of paid work, in combination with costs associated with treatment cause stress, strain and "compound an already very difficult situation for those struggling with a cancer diagnosis".

A survey of patients and carers by the Irish Cancer Society showed that people, on average, face a loss of income of over €1,500 a month, at the same time their expenses rise by more than €750 a month.

St Vincent de Paul National President Rose McGowan says they have been asked for help by people diagnosed with cancer 1,400 times over two years, and that might be an underestimate.  Photo: Fennell Photography
St Vincent de Paul National President Rose McGowan says they have been asked for help by people diagnosed with cancer 1,400 times over two years, and that might be an underestimate.  Photo: Fennell Photography

"As well as health- and hospital-related charges, SVP would also receive many requests from people who have extra heating costs during their cancer treatment and are struggling to keep their homes warm," Ms McGowan said.

Another major issue is when a child receives a diagnosis, especially within a one-parent family.

St Vincent de Paul shared the following story of an Irish family currently managing life with a sick child.

"We recently began supporting a one-parent family, mother and three children. Her second youngest is being treated for cancer and is required to attend weekly appointments in Dublin. The parent had no childcare so all three children traveled with her costing over €90 with petrol, tolls, parking and specialist snacks for the daughter. Before we met the family, the car broke down so she took out a loan with a moneylender and is still paying it back. The weight of the debt on top of the stress of taking care of a sick child by herself was overwhelming".

The above experience of how cancer treatment has a wide-ranging financial knock-on effect, is echoed by findings from the Irish Cancer Society too.

"The financial impact of a cancer diagnosis is broad-ranging and includes everything from medical expenses, hospital charges, travel to and from treatment and appointments, car parking charges, one-off purchases like wigs or fitted bras, paying a private health insurance excess, and increased energy and heating bills," the cancer society's spokeswoman said.

The end of treatment leading to a full recovery doesn't stop the bills with people needing to take out further loans to pay off debts incurred during the period of their illness.

"Unfortunately, the financial impact of a cancer diagnosis does not stop once people have finished their treatment. Some need to take out loans to pay off bills and other expenses due to the financial impact of cancer, which they can be paying back for years," said the spokeswoman.

If you or anyone you know has questions or concerns about cancer, contact the Irish Cancer Society Support Line on 1800 200 700 or visit cancer.ie. To contact St Vincent de Paul call 01 884 8200 or visit www.svp.ie

Housing: People have lost homes due to cancer 

By far the biggest financial impact of cancer is on housing, be that if the person is in rented accommodation or in a private property. The Irish Cancer Society told the Irish Examiner that it has even cost people their home. 

And it is not just things like monthly rent or mortgage payments that are affected, but longer term things like survivors being unable to access a mortgage years later.

"Inevitably, this limits people’s ability to cover their mortgage payments or rent, and can leave people in very vulnerable situations. Through our support line, we hear of cancer patients and their families who struggle to pay their rent and mortgage.

"One respondent to our 'Real Cost of Cancer' survey said they lost their home as a result of the financial strain caused by a cancer diagnosis," a spokeswoman for the charity said.

David Hall from the Irish Mortgage Holders Organisation said they have helped a number of people over the last 10 years who are in arrears due to cancer.

Meanwhile MABS, the Money Advice and Budgeting Service has been assisting people with a cancer diagnosis for years, for free.

Their help is extremely practical and ranges from dealing with banks to landlords and electrical suppliers, as well as seeing if there are extra tax credits or benefits available to increase income.

Michelle O'Hara from MABS told the Irish Examiner that the only thing a person needs to do is "pick up the phone".

"The doors are open for everyone. We have supported people going through cancer.

"We examine where they are now, if they are out of work we see if they are on the correct social welfare entitlements based on family make up, like with a spouse or not, or have children or not, and we can support them in the application too. If you're not able, we do it for you, we're your voice when you're not able," said Ms O'Hara.

David Hall from the Irish Mortgage Holders Organisation said they have helped a number of people over the last 10 years who are in arrears due to cancer. Photo: Sasko Lazarov/RollingNews.ie
David Hall from the Irish Mortgage Holders Organisation said they have helped a number of people over the last 10 years who are in arrears due to cancer. Photo: Sasko Lazarov/RollingNews.ie

"We'll also look at tax credits and see if you are making the most of tax credits," she added.

For when people are in actual arrears, or unable to pay mortgage requirements, MABS can deal with the various banks, and have done so with consistent success.

"If there are issues with creditors, or if there is a mortgage in place, or if a child has cancer, and a parent has to take time off and apply for carer's payment and carer's leave, we can write to your financial institution, and can get a six-month break.

"There's nothing we haven't seen before, they (the financial institutions) do play ball. My staff have 30 years experience doing this," Ms O'Hara said.

"With mortgage payment breaks - our experience in MABS of supporting people going through this in their lives is that the financial institutions are very open to short-term support, to alleviate additional worry," she added.

When it comes to private renters, MABS have a good relationship with the Residential Tenancies Board (RTB).

"Many landlords are not professional landlords, and they are reliant on rent for their own income or they could be in mortgage difficulty for that property. So we would have very strong links with RTB, and we often negotiate with landlords," Ms O'Hara said.

Along with actual housing issues, be it mortgage or rental payments, household bills is another area in which MABS successfully assists people with cancer.

"People have been trying to pay the mortgage or the rent, and in paying those bills they haven't been paying the electricity bill, and then they get the disconnect notice and it's panic stations.

Ms O'Hara explained: "But we've a direct line in with the electric suppliers, we can negotiate out your arrears. We're trusted and respected, and we're seen as the honest broker."

She believes there are far more people out there with cancer than they are currently working with and it may be as simple as people not knowing the help is available.

But there is another deeper issue at hand too - the fact that when it comes to financial worries people tend to put their head in the sand.

"When you are in trouble with money, regardless of why, it's not the same as being in trouble with other things. There are a whole host of emotions: 'How did I manage to get myself into this trouble?' or 'Why can't I manage this money'?

"Your mind gets consumed with shame and embarrassment and the complete and utter gut-wrenching terror of it. There's a particular psychology about being over indebted.

"There is absolute hope, we are getting excellent outcomes every day of the week, but we can't unless you're with us," she said.

The MABS Helpline 0818 07 2000, Monday to Friday from 9am to 8pm or visit www.mabs.ie

Nicky Donnelly: "Childcare was our biggest issue"

The day after the schools closed in March 2020, was the day Nicky Donnelly, 42, found a lump on her breast. The trained midwife would spend the next nine months navigating cancer, chemotherapy and the homeschooling of her three young children, then aged seven, five and three.

Just before the pandemic hit, Nicky had hit her stride in life. In March 2020, she was a "stay-at-home mum", a role that had taken her time to get used to.

"After my third maternity leave in 2016 and 2017, I went back to my job in a fertility clinic. In December 2017, the childcare juggle, exhaustion, and no financial gain forced us to take the decision for me to take some time out from working and stay at home full-time with my kids. I really struggled with my role as a full-time mom for most of 2018.

"But by 2019, I had settled into my role, I loved that I was around for my kids and appreciated that time with them and felt privileged and content in my role. I also started doing some sporadic midwifery work.

"My husband was working a very busy full-time job and was also very supportive and involved with all the decisions and family life. Life was good. I even joked that something was sure to happen, as life was too good," says Nicky.

The "something" turned out to be a "small hard lump" on her right breast - discovered while showering. She immediately went about getting it investigated and days later had a mammogram, ultrasound and biopsy.

"March 20, 2020, the day etched into my brain forever, we set out for the hospital after an anxious week. My husband came with me not knowing if he’d be allowed into the hospital, he wasn’t, but was snuck in a different door by the lovely staff who knew the bombshell that was about to hit," recalls Nicky.

"So the biopsy revealed the lump was cancer, I was told I had cancer. It was triple negative, invasive ductal carcinoma, grade 3 - active and growing fast. I would need surgery, chemotherapy and radiotherapy as this type of cancer was the hardest to treat," says Nicky.

We sat silent, numb - my husband looked at me in shock - I had known but he had not. 

"We were later handed a booklet ‘how to tell your children you have cancer’, this was the moment of devastation and panic - how would my husband and kids make it without me?" she adds.

For some people, the gruelling nature of chemotherapy renders them unable to work and things like rent, bills and mortgages are grossly impacted, for Nicky and her family - the biggest life issue was childcare.

In a locked down world, Nicky would have to go through multiple surgeries, further news that the cancer had reached her lymph nodes, chemotherapy and radiation treatment, while managing homeschooling and childcare.

"We arranged for my chemo to be on a Friday so the worst side effects, the first few days post chemo as we thought, would be on the weekend so my husband could mind the kids when he was not working.

"Four days after the first chemo I was hospitalised. The medications didn’t agree with me, and my mental health was suffering. The diagnosis and the impact of the chemotherapy treatment hit me hard emotionally and I realised I couldn’t do it all alone," explains Nicky.

"My husband brought the kids to their grandparents in Galway for a few days after all the subsequent three AC (adriamycin cyclophosphamide) chemos. I was exhausted physically and emotionally having had no physical outside help or support with childcare," she adds.

Nicky Donnelly with her husband Colin and three children Sam, Theo and Sophie. "We arranged for my chemo to be on a Friday so the worst side effects, the first few days post chemo as we thought, would be on the weekend...Four days after the first chemo I was hospitalised." Photo: Eva Blake
Nicky Donnelly with her husband Colin and three children Sam, Theo and Sophie. "We arranged for my chemo to be on a Friday so the worst side effects, the first few days post chemo as we thought, would be on the weekend...Four days after the first chemo I was hospitalised." Photo: Eva Blake

What followed was hair loss, a decision not to get a wig, medical menopause and then 12 more sessions of chemotherapy from July 2020 to the end of October 2020. Nicky rested in bed on the weekend of the treatments so that she could mind her children for the rest of the week.

"By the end of October I was pretty exhausted to say the least, but so glad that chemo was over," says Nicky.

She had a break from treatment in November 2020, followed by 20 daily radiation sessions that started at the end of November. On December 18, 2020, she finished treatment and felt "ecstatic". By March 2021, she had taken on work one day a week in an antenatal clinic.

"My midwifery work schedule increased in September and October and I really started to feel like myself again," says Nicky.

While her recovery has not been without its scares, Nicky is starting to live a life where every conversation is no longer about cancer, however, she is extremely mindful of the financially "privileged" position she was in while going through treatment.

"Many people continue to work through cancer treatment because they have no choice. This is so sad, knowing how hard treatment is. 

There are still workplaces that give no paid sick leave and I can only imagine how devastating this would be for many families who end up with a cancer diagnosis.

"Our only issue really was childcare, and we managed. The ages of our kids helped, and they had each other and my husband was amazing. I can’t imagine how it would have worked for single-parent families," says Nicky.

She now urges everyone to be health aware.

"I never thought: 'Why me?' But why not me? Cancer can happen to any one of us.

"I urge everyone to be body aware, mental health aware and always get things checked and keep advocating for yourself if something doesn’t feel right. Our health is our wealth, and in our country we are so privileged to have free healthcare," she says.

Katie Boylan: 'The financial impact of cancer has meant I'm still living with my parents and I’m 40'

Dubliner Katie Boylan, 40, found out she had a tumour on her colon two days after her 35th birthday. Working in radio advertising and living in the capital, she had just moved home to her parents to save "for a year" to buy her own house.

What she thought was another irritable bowel syndrome (IBS) flare up around the Christmas of 2016 and the New Year of 2017, would send her on several years of treatment, and surgeries.

She began chemo for her tumour in 2017, but a scan a few months later showed it was having no effect. Katie was given a more "aggressive" form of chemotherapy for another five months, alongside radiation therapy. While it worked to shrink her colon tumour, further scans showed the cancer had spread to her liver.

"So I was officially stage 4. My surgeon said it was one of the worst cases he’s ever seen so I know how lucky I am to be alive," says Katie.

What followed for 35-year-old Katie was a very serious nine-hour operation.

"In October 2017, they opened me up from my breastbone right down to my pubic bone so the recovery was pretty nasty. 

I spent six weeks in hospital after that operation and waking up in the high dependency unit after it was probably the worst day of my life. 

"I was in so much pain and I couldn’t move because of the incision down my front," says Katie.

Four months after that major operation she was given further chemotherapy "to make sure". She was officially cancer free, but not without additional impacts.

"I had to have three major operations following this due to complications and damage from treatment. My last operation was in February 2021," says Katie.

She describes her life and its plans as having just "stopped overnight" in her thirties.

"I didn’t leave my parents’ house bar to go to the hospital and back. I was really, really ill. I went from being a very busy, active, highly-motivated 35-year-old to a couch potato overnight. It was very tough mentally and physically for a long time.

 Katie Boylan with her dog Rocky. She has started a creative writing course and has had a story published, she regularly does yoga and is training to be a mindfulness teacher too. Photo: Moya Nolan
Katie Boylan with her dog Rocky. She has started a creative writing course and has had a story published, she regularly does yoga and is training to be a mindfulness teacher too. Photo: Moya Nolan

"I spent chunks of time in hospital over the last four years," says Katie.

Aside from the vast physical, mental and emotional ramifications of her cancer, subsequent surgeries and treatment, there was another aspect of her life that was affected too.

"The financial effect of cancer is something that is not spoken about. I was off work for two full years. When I went back to work, I was only working two days a week and built up from there, so my savings were completely depleted.

"The financial impact of cancer has meant that I am still living at home with my parents and I’m 40. I thought I’d own a house by now," says Katie.

"And as I am single there are no prospects of me getting on the property ladder any time soon. I don’t know what I would have done without my parents there to move in with," she adds.

Housing aside, the actual cost of treatment, all while having private health insurance, set Katie back tens of thousands over the last few years.

 Katie Boylan: "Cancer took so much from me, but it also made me so much closer to certain people in my life and I don’t want that to change. I tell people I love them more." Photo: Moya Nolan
Katie Boylan: "Cancer took so much from me, but it also made me so much closer to certain people in my life and I don’t want that to change. I tell people I love them more." Photo: Moya Nolan

"I worked out recently that I spent almost €24,000 getting better over four years, which is just insane. I was charged an excess (on health insurance) every time I went in for chemo, every time I had blood tests, every time I went to the dressing’s clinic, there’s an excess every time you go in for an overnight stay or for a day procedure and I had a lot of overnight stays and a lot of day procedures," says Katie.

With cancer affecting everything from her work to her savings, and from her property plans to her health insurance costs, it also just affected her overall life plan.

"Cancer took so much from me, it came along and ripped my life apart and completely derailed the journey I thought I would take," says Katie.

Watching beloved friends marry and start families of their own was another hard part.

"Every milestone they hit was a just a reminder that I wasn’t in that place and that it could have been different," remembers Katie. 

Six months after I was diagnosed, my best friend got married, I planned her hen from the chemo ward, which was so wrong, and then I was so sick I couldn’t make the hen. Worse still I never made the wedding for the same reasons.

While she has missed loved one's key milestones, she is now rebuilding a different life for herself than the one she previously imagined.

She started a creative writing course and has had a story published, she regularly does yoga, has a dog and is training to be a mindfulness teacher too.

"People are so stressed these days and I was completely stressed out before I got sick. I’d also love to try to help people who are going through cancer treatment like I was," says Katie.

"I also try and spend more time with the people I love. Cancer took so much from me, but it also made me so much closer to certain people in my life and I don’t want that to change. I tell people I love them more.

"I don’t know what I would have done without my parent’s support, my employer's support and the support of Purple House (cancer charity)," adds Katie.

Vicki McGrath: 'I definitely think it was my mental health that's been most affected'

Vicki McGrath, 36, found a lump on her breast while sitting in an airport terminal returning from a holiday in Croatia in 2019.

Two years of treatment and an interrupted life later, she is in a new relationship and moving to Portugal for several months for a much-needed post cancer reset in early 2022. However, in September of 2019, she was just about to embark on a different path to the one cancer brought her on.

"I had broken up with my ex-boyfriend a year before and the plan was to move out of home. I was looking at places on Daft.ie, and the plan was to be gone before Christmas, but thankfully I was at home and didn't have to pay €700 a month on rent when I was in treatment," says Vicki.

While the plan was to move in with friends, her airport discovery put a pause on that.

"I found a lump when I was on holiday in Croatia, I was lying on the seats in the airport and I had a bite in the middle of my chest, and I grazed my chest. It was 2am in the morning. It felt like a small chocolate easter egg and I ran to the toilet with my friend - that was early September 2019," remembers Vicki.

On October 2, 2019, she was told she had cancer. On November 13, she began chemotherapy, the "red devil where you lose all your hair", and then just before Christmas 2019, she tested positive for the BRCA2 gene, meaning she was at a high risk of developing breast and ovarian cancer.

This diagnosis now meant not only chemo, but a double mastectomy and a full oopherectomy for preventative purposes.

Vicki McGrath in treatment. On November 13, she began chemotherapy, the "red devil where you lose all your hair"
Vicki McGrath in treatment. On November 13, she began chemotherapy, the "red devil where you lose all your hair"

The plan was to get her strength back after treatment and have the surgeries and reconstruction in March 2020. However, the pandemic meant the surgeries got pushed out and pushed out, leading Vicki to have a single mastectomy in March 2020 and another single mastectomy just before Christmas 2020, but she is still waiting on her oopherectomy.

"So every six months I have bloods done to track for ovarian cancer," says the 36-year-old Dubliner.

While she considers herself fortunate to have had health insurance and to have been living at home, she did incur ongoing expenses and hefty admin associated with her treatment.

"You're busy, you've so much to do. When you're diagnosed with cancer you've all these things going on, you could do with a PA. It would be amazing if they did a course about the amount of admin you need," says Vicky.

Costs wise, many things added up over time that insurance didn't cover.

"My wig cost me €1600, which the VHI paid towards and then I paid towards too. For illness benefit I got paid €200 from the State and then my employer topped it up, so I was very lucky to be on full pay with Guinness," says Vicki.

Aside from her treatment, she needed an injection of Zoladex every three months - used to suppress reproductive hormones especially during the treatment of breast cancer. She had to buy all of her weekly medication — including things like anti-nausea tablets and mouthwash — which amounted to "a big bag of medication". The cost of this alone was €120 every two weeks.

Vicki celebrating the all-clear. "Another thing I see is people whose stories of recovery I was following are now getting re-diagnosed. I've to deal with the fear that any ache or pain might be a return (of the cancer)."
Vicki celebrating the all-clear. "Another thing I see is people whose stories of recovery I was following are now getting re-diagnosed. I've to deal with the fear that any ache or pain might be a return (of the cancer)."

Then there was the ongoing cost of transport to and from appointments and treatment sessions.

"One of my good friends lives nearby and he'd drive me to chemo, but sometimes I'd have to get a taxi back as the sessions would end late and I'd be spending €30 to €40 if there was no one around for a lift as you don't want to be a nuisance to people," says Vicki.

However, money and work aside, Vicki estimates that her mental health is what was most affected by her experience over the last two years.

"I definitely think it was my mental health that's been most affected. I swam and trained through treatment but by the summer of 2020 it hit me when the surgeries kept getting pushed back.

"My serotonin levels were depleted, and I went onto antidepressants. You're no longer who you were and you've got sh*t hair, you're emotionally drained and you terrified you'll get sick again," says Vicki.

"The darkest point was August or September 2020. I've started doing counselling to help cope, covered by ARC Cancer Support. I did face-to-face counselling when I first finished chemo and I thought I was bullet proof, but it's now I need the help - figuring out what my purpose is.

"Another thing I see is people whose stories of recovery I was following are now getting re-diagnosed. I've to deal with the fear that any ache or pain might be a return (of the cancer). Life is not the same," adds Vicki.

She returned to work for Guinness in March 2021.

Vicki now has the all clear. She feels wider society would do well to check in with people regardless of how things look on the outside and regardless of whether they have cancer or not.
Vicki now has the all clear. She feels wider society would do well to check in with people regardless of how things look on the outside and regardless of whether they have cancer or not.

"Guinness is amazing, but my whole team has changed in the few years I was out. It's so busy, and there are still days I struggle to think of the words," explains Vicki.

In order to find something that will give more work-life balance, she is moving to Lisbon in the New Year for some time away to figure out her next move.

"I'm going to Lisbon in January one-way, and I'm going to do some remote work online and get into a new routine, find a new coffee shop, go for nice swims, and just get a breather after cancer and Covid," says Vicki.

"I think for the first time in ages I'm excited again," she adds.

While she is extremely grateful for the support of her family, friends, GP and local ARC cancer support centre, she feels wider society would do well to check in with people regardless of how things look on the outside and regardless of whether they have cancer or not.

"People might look fine but you don't know what things are going on behind the scenes, just being kind and just check in with friends, even if they don't have cancer. The persona people put online is very different to what's really going on," says Vicki.

You can follow Vicki on Instagram @vikkimcgrath

More in this section

IE_logo_newsletters

Select your favourite newsletters and get the best of Irish Examiner delivered to your inbox

Execution Time: 0.236 s