When the going gets tough, the tough get shaving

Losing her hair to cancer absolutely terrified then 23-year-old graduate Áine O’ Connell – until her boyfriend found a way to brighten her daysWith her chirpy demeanour and a growing mop of wavy hair, Áine O’ Connell does not look like somebody recovering from months of fortnightly chemotherapy. This month marks the 1 year anniversary of her “official” diagnosis with cancer.“There was a lot of backing and forthing,” she says. “You know, ‘it’s nothing to worry about.’ Then, ‘you might have cancer, but you might not.’ Then, ‘okay, you probably have cancer.’ That was March – it wasn't until the April that I was officially diagnosed with stage two Hodgkin Lymphoma.”“Stage one?” her boyfriend, Niall Thompson, wonders.“Stage one and a half,” she compromises with a laugh. “I had to undergo a bunch of tests, but it wasn't until I had surgery identifying the tumour that the cancer was confirmed.”Hodgkin Lymphoma is a cancer of the lymphatic system. This system is composed of tubes, vessels and organs that help the body to fight infection. While Hodgkin can start in any part of the body, it most commonly starts in the neck, armpits or chest.“I had a small lump on my neck and sort of thought it was nothing,” Áine says. “But then my mum was like, ‘It might not be nothing, please go to the doctor.’ So I went to the doctor, had an ultrasound and it took the surgery to confirm it was cancer.”“Hodgkin is the second most ‘beatable’ cancer,” Áine informs me. The Irish Cancer Society state that despite an estimated 146 diagnoses, treatment success rates are high, even in cases where the cancer has spread to other parts of the body.“They made it out to be an 80-20 thing, saying that 80% of Hodgkin patients go through chemo, are fine, and carry on with their lives as normal. I was determined to be in that 80%.”“Yeah, we had it in our heads that she was gonna be part of the majority,” Niall adds.“This was gonna be your run of the mill cancer experience,” Áine agrees. “So, from the outset, death wasn't really a fear. I probably wasn't going to die. But I was, for sure, going to lose my hair.” She currently has a full pixie cut, her hair in thick, healthy-looking waves.

Worst Fears

“At first, I was holding out hope. I remember asking my consultant, and he said my hair would go. So I said, you know, certain chemos don't cause mass hair loss. And he looked at me and said, ‘Áine, it's all going to go.’ That was the end of that.”She hesitates, almost guiltily. “I know I'm really lucky to be able to sit here and say that I wasn't going to die so I wasn't afraid of death. But the idea of losing my hair was really the kicker. It absolutely terrified me.”“Before I was diagnosed, I had really long, thick, jet black hair with a peroxide blonde streak in it. I had gotten that dyed in after my Leaving Cert, and I was diagnosed at twenty-three. So after five years, it was really part of my identity. In college, I was ‘the girl with the hair,’ and when I worked in retail I was always asked about it.” She smiles at the memory and mumbles, “I miss my hair.”“It's probably worth mentioning I didn't have the nerve to shave it off. I started chemo in late May. My hair managed for the first round, but after the second round it started coming out. It was less so in clumps, like you see in the movies, but more so you'd run your hands through it and loads would come out.”She sucks in air. “It was completely terrifying. I don't think I've experienced anything so terrifying in my whole life.”“I got it cut into a chin-length bob at first. Then I got fitted for a wig. That was fairly traumatic; it just resulted in me and my mum sobbing for an hour and a half. I hated the wig, she hated the wig, granny hated the wig – did you hate the wig?” She turns to Niall.“I liked wearing it,” he says.Áine breaks into a smile. “Yeah, Niall used to wear it. It didn't work, it was terrible! He looked like Tommy Wiseau. It was horrendous.”She laughs. “So anyway, I cut it into a pixie cut. I still couldn't deal with the idea of being completely bald. It wasn't until I was two months post-chemo that I worked up the nerve to shave it.”“It was during Storm Ophelia! Niall and I were just here and Niall was like, ‘your hair, it's bad,’ and I was like, ‘I know…’ So we just cut it off in the bathroom. And it looked way better then, actually.”“Even before I fully shaved it, I was feeling pretty crap about being bald. Then Niall came to me with the best idea ever.”

Bright Idea

“I decided I was going to shave my head within the first week or two after her diagnosis,” Niall explains.“And because it was so soon after diagnosis I was kinda like, ‘okay, sure,’” says Áine. “My brother had offered too, and so did my dad - not that my dad has much hair anyway!”“But then I was talking to someone, and I said, why not try fundraise, too?” Niall continues.“I had a significant following online,” Áine says. “I had started a blog sharing my experiences, naively believing I would blog my way through cancer. No. I sat watching TV and eating nachos for six months.”And rightly so. The Irish Cancer Society states that fatigue can result from both cancer and its treatment. Side effects of chemotherapy are not limited to tiredness and hair loss either. Nausea and vomiting, cancer pain, sensitive skin, and a weakened immune system are just some of many side effects commonly experienced. These all affect a patient’s energy levels and mobility.“But the Journal had published one of the pieces I blogged at the start. So people would Tweet their support and stuff, and I knew they'd probably support a fundraiser if I shared it online.”“It was funny actually,” says Niall. “We were initially like, ‘€500: it’s a bit high but we’ll see if we get that.’ So we put it up on gofundme, and then we were looking at it like, ‘no one’s gonna donate to this!’ And then we woke up the next morning and it was more than halfway there. Within 18 hours, it had hit the €500. I couldn’t believe it and wished I had put a higher goal.”“Niall had promised to shave his eyebrows off if we reached €500, thinking ‘ahhh, no, we might get two, three hundred tops’- nope!” Áine laughs.“We ended up with €1,500 for the Irish Cancer Society,” Niall adds. “It was amazing.”“It was so nice to be able to do something constructive while I was doing chemo,” says Áine. “It was a real boost for me to help people who were sicker than me. It was also wild to see Niall shave his head - he looked really sick! We looked like two chemo patients.”“Yeah, then I grew a beard,” says Niall. “A really terrible beard. But if it wasn’t for that I would have looked even more ill.”“It's kind of cliche, but it was nice to have something good come out of the whole cancer thing,” says Áine. “The fundraiser idea was just so typical of Niall – it’s getting mushy now, but it's so him to want to comfort me and help others at the same time.” They exchange a look and an awkward laugh.“But it is, it's just textbook you,” she tells him. She turns back to me. “I think a lot of 20-something-year-old lads would run from the situation completely. It's a lot to handle, it's huge – I even had to get my eggs frozen because they didn't know how chemo was gonna affect my fertility.”“So for Niall to one, stick around, two, follow through on shaving his head and three, raise a bunch of money to help others with the same thing I had...it was just incredible. He got me some great presents around that time but that is definitely up there as the best thing he’s ever done for me.”The couple now share an apartment in Dublin City Centre and are still extremely grateful to those who donated to the fundraiser. Áine has recently returned to full-time work and campaigns for TogetherForYes in her spare time. She's also back to being an avid reader and an enthusiastic swimmer. You can catch her Tweeting about RuPaul’s Drag Race, books, society and more at @himynameisaine.I had expected to make significant use of the tissue pack in my bag during this interview. While the conversation turned somber at times, both Áine and Niall share an ability to bring a lightness to a heavy subject. Never have I laughed so much while talking about something so grim. But, to quote Áine herself, “cancer is weird.”