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'I remember being in hospital a lot - I thought it was normal'

As a special pop-up shop and gallery marks World Cancer Day 2020, which falls tomorrow, three survivors share their stories with Emily Hourican

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Lilly now, aged 10, and as a baby undergoing cancer treatment in the photo she is holding

Lilly now, aged 10, and as a baby undergoing cancer treatment in the photo she is holding

Milliner Sarah now and, in the photo, undergoing treatment for breast cancer

Milliner Sarah now and, in the photo, undergoing treatment for breast cancer

Stephen Bradley

Stephen Bradley

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Lilly now, aged 10, and as a baby undergoing cancer treatment in the photo she is holding

It's not so much what's in the pop-up shop and gallery set up by Breakthrough Cancer Research - although there are wonderful things to be seen and bought here - as what isn't.

Alongside the art, photography, books, crafts, clothing and sports gear made by cancer survivors of all ages, from all over Ireland, there is a part that remains empty - a stark physical reminder of all those lost to cancer, and of the need for research so that more might survive, and their quality of life be improved.

Currently, there are 190,000 cancer survivors living in Ireland (almost 4pc of the population), but the rates are very imbalanced - running at over 90pc for some cancers, such as prostate, and just 9pc for others. This year, Breakthrough Cancer Research aims to raise €2m to fund research into new and more effective treatments for poor prognosis or drug-resistant cancers, particularly ovarian, malignant melanoma, lung, pancreatic and oesophageal cancers.

As Breakthrough Cancer Research CEO, Orla Dolan says, "We make great strides every day, but cancer research in Ireland can move further and faster with increased public donations and serious commitment and investment from government."

The Shop That Nearly Wasn't is both a fundraising and an awareness-raising exercise. It's also a delightful shop. Among the many lovely things available at the Temple Bar pop-up are tote bags designed by 10-year-old Lily Burke, designs by RTE Super Garden winner Grainne Walsh, books by Peter Donnelly, Stephen Bradley, Nicola Pierce, a limited edition Michael Flatley fine art print, millinery by Sarah McGahon, sports gum shields by Cathy Robinson of Gum Shields 2 Go, fine art screen prints from Monika Crowley, photography by award-winner Kevin Griffin, and more. All these people are cancer survivors. Today, we share some of their stories.

Lily Burke, now aged 10

Lily Burke was just 20 months in 2011 when she was diagnosed with acute lymphoblastic leukaemia. "She was never sick at all," her mother, Jess recalls. "One weekend she was unwell. I thought she had the flu. I took her to the doctor on the Monday morning and he took her temperature. It was quite high. He was sending us out the door on Calpol and Nurofen, when he said 'actually, she could be dehydrated, because she's so tiny. She might need to go on fluid for an hour.'

"So we went to the hospital, in Cork, and they took bloods, and at 4pm those bloods came back and the consultant began explaining it all to me. But she didn't use the word 'leukaemia'. The way she was explaining it, I thought Lily had a bleeding disorder. And then she said 'lymphoblastic cells are also known as leukaemia cells, and we'll have to see is there a bed in Crumlin because that's the best hospital for kids with cancer'.

"In one sentence I heard 'leukaemia, Crumlin and cancer,' and I though 'Oh my God…' I assumed Lily was going to die. I was a single mam at the time, and Lily was my world."

Treatment started almost immediately, and continued for nearly three years. At one stage, Lily was getting chemotherapy every day, either intravenously in hospital, or in pill form at home. "I look back sometimes," says Jess now, "and there are parts I don't remember. It was a blur. After the first eight to 10 months, things calmed down a little bit, but every time Lily had a temperature, we were back in. There was no rest of my life. I had to be ready to drop everything. I'd be up taking her temperature in the middle of the night, and there were a few times where it would have gone up, and we'd have to just go straight in to the hospital. In a way," she says, "it was good that it was just the two of us. There were no other kids to worry about. I was able to just go."

Because Lily was so young, she didn't miss school - her chemo started in May 2011 and finished in November 2014, a month after she was due to start pre-school. "So she didn't miss much of that. But she would have missed out on other things," Jess says. "She had no immune system at all. At the time we were living in a lovely estate with loads of kids, and she couldn't mix with them. She was invited to a party and we had to explain, she couldn't be around other children."

Now, Lily is like any other child her age - though with a lot of extra fight. "She does everything," Jess says, "and she's good at everything. She's mad into sport - basketball and soccer - and art. She's so driven. She prospers at everything she puts her mind to. I'm just so proud of her; back then, I didn't think she was going to be there. Now she's here, and she has two younger brothers."

Lily herself doesn't remember much of those years - "I remember sometimes being carried out to the car in the middle of the night," she says, "and I remember all the nurses being really nice. I don't really remember any of the treatment. But I remember being in hospital a lot. I just thought that it was normal."

So what got Jess through that time? "I have so many pictures of Lily, and in 99pc of them, she's smiling. She was just so brilliant. Overall, she was the happiest little child ever. You couldn't not get through it, with the way she was. I'd have bad days or whatever, and then I'd look at her and she'd be happy out.

"When I was given the diagnosis, I was told there was a 90pc success rate for her. But all I could see was the 10pc. You never think it's going to be your child diagnosed, so now why would she not be one of the 10pc? In terms of research, getting that 10pc down even further would be great."


‘The meds badly affect my quality of life’

Sarah McGahon, milliner

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Milliner Sarah now and, in the photo, undergoing treatment for breast cancer

Milliner Sarah now and, in the photo, undergoing treatment for breast cancer

Milliner Sarah now and, in the photo, undergoing treatment for breast cancer

Sarah makes hats and headpieces that have been worn by, among others, Lady Gaga and Amy Huberman. From Bray, Co Wicklow, she was 41 when she found a lump in her breast in 2015. Her GP referred her to the Breast Clinic, where Sarah was diagnosed with breast cancer, underwent "a lumpectomy and then I did chemo and radiotherapy, and that would have been it - I could have put it in a box and said goodbye to it, except lots of other stuff happened."

Sarah finished radiotherapy "the day before Christmas Eve 2015. I had booked myself a celebratory week away in the Canaries on my own after Christmas, where I was just going to relax and try to process what had happened to me. We had a wonderful family Christmas, and then my lovely dad was killed in a car accident on St Stephen's Day."

Sarah's world, she says, "was turned upside down. It was such a huge shock. I was reeling. It was all so traumatic. I hadn't had time to process any of my cancer journey, and then this happened."

That summer of 2016, a routine mammogram found more lumps, "back by my rib cage. I knew that meant a mastectomy. And indeed, I had more surgery, but no chemo this time, thankfully, because chemo is awful. After the operation, I set myself up on the journey of getting myself better. But they had put a temporary implant in, before the proper implant, and it exploded. That set me back a year. I couldn't really 'get over it' until that was sorted out. I was in the public system and yes, I was a bit frustrated from time to time. I was trying to practice acceptance, but that didn't always happen."

This time last year, Sarah got "a lovely comfortable silicon permanent implant." However, she is not, as she says "completely out of the woods yet. I'm in a funny category, because my grandmother had a lump removed at 42. It was cancer, but she needed no other treatment. But because of that my mammograms have been increased to two a year, and they decided to up my medication, Tamoxifen.

"Best practise was five years when I started, now it is 10 years, and the fatigue is terrible. It badly affects my quality of life. Normally, I'm a very dynamic, go-getter type of person. My brain is now completely healed from the trauma and wants to get up now and start doing stuff, but my body is saying 'that's not going to work.' I run my own business, but not at the moment. I got signed off as disabled, because of the fatigue. My local cancer support in Bray are very progressive. I do yoga, I meet people there for coffee, there's a writing group, a choir, and they keep an eye on me!"

The Shop That Nearly Wasn't runs from tomorrow until February 11. See breakthroughcancerresearch.ie

‘At first I just thought I was exhausted — then the tests started coming back’

Stephen Bradley, film director and author

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Stephen Bradley

Stephen Bradley

Stephen Bradley

Stephen and his wife, actor Deirdre O'Kane had just moved back from London to Dublin, with their two children, in 2016, when he was diagnosed with stage four cancer. "At first, I just thought I was exhausted," he says. "We'd been living in London for 10 years, and I had to pack the house by myself because Deirdre was away working. I'd also just finished a big writing assignment, driven back from the UK with the cat, and as soon as I got to Dublin I had to go straight into a big TV shoot. I thought I was wrecked and in bad form and finding the move hard."

Initially, he went to A&E: "There was talk of a liver infection, antibiotics and so on, so I wasn't too worried. And then the tests started coming back, and I could tell by the amount of medical activity that there was something seriously wrong. I was in the public system but I got moved to a single room; more and more tests were being done, X-rays in the middle of the night and MRI scans."

The diagnosis, when it came, was in stages. "In the beginning it was the liver, but that turned out to be secondary to bowel cancer. At one point, I thought, 'it must be everywhere…'" Mercifully, one of his four consultants told him "'this is very serious, but it is curable.' When you hear those words, psychologically, you make an absolute switch into 'OK, I'm going to do this…!' I think as long as you have hope, you can find the strength. And you find the positives. If you're lucky, like I was, you're not going through it alone."

Stephen had "various treatments' - including major surgeries - in 2016, 2017, and again in 2019.

"It takes a long time," he says, "there were various stages and complications." As part of his drug therapy, he was given an immunotherapy drug that, at the time, was not available on the NHS.

"If I had been diagnosed and treated in the UK, I don't think I would have survived. And I know that if I had had my symptoms 20 years ago, I certainly wouldn't have survived."

In a "weird way," Stephen says, "the aftermath was almost harder. I had a psychological dip after I was given my first all-clear. I had been warned this might happen, so I knew it was an issue, something to get through, which I did with the aid of the people around me.

"What you're trying to do is get back to where you were, to the person you were. Because my treatment was so long, and I was so ill, I allowed myself to retreat into a childish state, as a coping mechanism. So I had to get back to being an adult. You've got to get back to real life, to work, and financially, cancer is devastating."

But, he says, "I do have moments where I experience deep gratitude. I don't worry about getting older and where I used to stress about, say, tax returns, I don't anymore."

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