Trina Cleary isn’t entirely sure what she was doing the week of Daffodil Day last year, although, like most of us, she can hazard a guess. “I’m pretty sure I was at home,” she laughs. A check of the diary later confirms it — she was in bed, ill, last year. “Polar opposites compared to this year,” she adds, smiling.
Polar opposites, indeed. Far from being in bed, this year, she plans to be scaling Croagh Patrick. In fact, when we chat over the phone, she’s a little out of breath as she’s out on one of many hikes that have formed her training for the big climb on March 26. it’s not the Croagh Patrick climb, the call to arms launched by terminally ill former RTÉ broadcaster Charlie Bird during his appearance on The Late Late Show in January, which now includes everyone from cervical cancer campaigner Vicky Phelan — who recently shared she will not now be doing the climb due to ill health, but is continuing to support it — to singer Daniel O’Donnell.
“I’m sure there’ll be a great buzz around it, but it’s ticketed and you’re told when to do it — that wouldn’t be for me. I’d just like to do it and do it in my own time and potter along, rather than have a group of people surrounding me.”
‘Climb Croagh Patrick’ has long held a place on her ‘life list’, an impressive list of experiences Trina — who has breast cancer — wants to tick off in her time on the planet. But she does thank Charlie for giving her a reminder to get on with this particular challenge.
Daffodil Day is on Friday, 25 March. Use the button below to make a much-appreciated donation to the Irish Cancer Society. Anyone with concerns or questions about cancer can contact the support line on freephone: (1800) 200-700.
“I’d already decided that this year I didn’t just want to live from scan to scan and that I’d do something off my life list in those in-between months,” says the 37-year-old from Co Wexford. “I saw Vicky Phelan [at the time] and Charlie were going to climb Croagh Patrick and I was like, ‘Right, this is after giving me a kick in the bum, it’s something I want to do and if they’re going to do it, so can I!’”
Since then, she’s been going hell for leather, training — hiking around Wexford to build stamina. No small feat when, not long ago, cancer was eating away at her bones so badly, she had to have hip surgery.
“My poor little legs,” laughs Trina. “We climbed Mount Leinster a few weeks ago and I was so tired, my legs were like lead and I was close to tears. Stuuy [her husband] was talking to me and I just had to say, ‘Stop it!’ I just got into my head and told myself: ‘There are people who would love to be able to do this and can’t, so just cop on Trina — put one foot in front of the other and just go’.”
For those who know her, this ‘get on with it’ mentality is pure Trina. And yet, this positivity, always so prevalent in her, also comes tinged with admissions of vulnerability. When we last spoke, a year ago, she talked of her desire to ‘get living’ once the pandemic was over. But now that moment has come, she’s not found the emotions around the lifting of Covid-19 restrictions quite as clear-cut as she expected.
“I’m trying to get back to seeing my friends but I’m struggling a bit, I’m not going to lie,” confesses the mum-of-one. “I don’t even know what you’d call it, but I’ve gone really into myself and I don’t want to leave my house, other than to get out for a walk.
“It’s almost like you’ve been held hostage or kidnapped or something for the last two years and you’re trying to learn to integrate back into the real world. It’s a bit daunting.”
It’s this unfiltered honesty that makes Trina such a popular hit online. Her nearly 18k followers on Instagram regularly get treated to quirky reels that carry a serious message — whether that’s the importance of early detection; how to check for lumps; body positivity and, most recently, menopause and its effect on sexual intimacy.
One of the many drugs Trina must take as part of her cancer treatment is Zoladex, an injection she has every 28 days to combat her hormone-driven cancer. It has plunged her into a medical menopause, something which has negatively impacted on her physically when it comes to having sex.
“It’s embarrassing because you can’t do anything without there being a big production beforehand,” she pauses, contemplating exactly how much detail to share. “I don’t know if this is too much information, but, like, having to put a towel down in case you bleed because it’s so tender down below.”
Frank sex-talk is not something she’s comfortable with — “my mam will be reading this,” she says, cringing — but she reckons our national prudishness around the subject is part of the problem. “We don’t talk about sex and so, when sex is taken away from you because of your illness, people tend to suffer in silence. They don’t want to take that first step and talk to a doctor because it is embarrassing — and it is embarrassing. I had to do it — but I think if I can break the ice and open a door for others, if they think, ‘Well, Trina has spoken to her doctor, maybe I can too and get a solution’ — then it’s worth it.”
On October 1 last year, Trina and her partner, Stuuy Lawlor, married in a magical weekend of family festivities and fun. In the photos from the day, Trina is radiant and, despite mere months having passed since the big day, she already talks wistfully of wanting to do it again. Perhaps a vow renewal could take place in a few years, she muses.
But the impact of menopause on their sex life is something that rankles with her. “We’re both young enough and you kind of feel you’re a newlywed and can’t really perform the acts that society deems normal for newlyweds.
“I get in my own head sometimes. Just worrying: Is he thinking that I’m not attracted to him?”
However, the logical side of her brain knows this isn’t true. “He’s so understanding. He’s just like, ‘It just is what it is and it’s fine. We’re comfortable and affectionate and we show our love in other ways. I have you and that’s all that matters’.”
Which is wonderful, but support in the system would be good too. “This is all very new to me, but there’s nothing out there support-wise that I’m aware of. My drugs are doing what they are supposed to do and this is a side effect, but I do think it’s a side effect that is way down the bottom of the list compared to my bone pain or fatigue and nausea, which would be deemed ‘important’ side effects. When you’ve had so much taken away from you, through drugs and so many changes in life, it would be nice to have that one little bit of normality.”
The response on social media to her post on the issue was hugely supportive, with many other people, post-cancer treatment, empathising with the authenticity of her experience.
Social media has been a constant go-to for Trina since being diagnosed with breast cancer, first in October 2018 and again in April 2020. From the outset, she was determined to share her story, not only to help make sense of it for herself but, more importantly, in the hope that others would know how to check their breasts and quickly investigate any lump. In 2020, the prognosis was that Trina’s cancer was stage four and terminal. But happily, the treatment has been working and the cancer is stable.
Last month, Trina took to her Instagram to announce the “best news we’ve had from scans in almost two years”; that her doctor feels confident enough in the stability of her illness to push the time between scans from three months to four months. “How incredible is that!” Trina posted. “I’m responding so well that I get an extra month of LIVING.
She feels a certain sense of responsibility to her Instagram following. “What happens is, if you don’t post for a while, you start getting loads of DMs saying, ‘Are you OK?’ ‘What’s going on?’ People are genuinely concerned when they don’t see you posting or on your stories, so I think it’s just easier to put up a post than reply to all the messages.”
“They’ve been there for me and they’ve sent their support and well wishes and that means so much. You nearly do feel obliged to let them know how you’re going because they obviously worry if you’re not online or haven’t posted, especially loyal followers.”
Her words remind me of a recent post by Vicky Phelan, where, despite the fact that she was dealing with the devastating personal news that new tumours rendered her current treatment plan untenable, she was still online, apologising to followers for not posting sooner.
Like so many of us, Trina has been following Vicky’s story, but there’s obviously an extra layer of understanding and empathy there which can sometimes make it even harder to watch.
“I feel so sad. It’s not just Vicky, there’s a few girls I follow and one girl, she’s similar to me, has breast cancer and it’s in her bones as well, and seeing them getting their scan results, and the various results coming in… I can’t see any more sadness,” she pauses. “It just reminds me that, as well as I’m feeling right now, the rug can just be pulled from underneath you.”
What others are going through reminds her how short life is, she says. “That’s why I’ve kind of kicked myself in the arse and said, come on, get moving and get some of these things ticked off that you want to do instead of just waiting.”
She managed to tick a few off last year. Ahead of Daffodil Day last year, Trina was featured on the cover of the Sunday Independent’s Life magazine, an appearance which prompted several groups and people to reach out, wanting to help her achieve some of those life list goals.
Building on the buzz, a friend set up a GoFundMe page to help raise money for Trina to travel to a Mexican hospital for experimental cancer treatment. The page exceeded its €50,000 target, raising €53,433 before closing to donations. But despite its success, the fundraiser provoked mixed feelings for Trina.
“I wasn’t expecting it and it just took off.” Then she started reading negative reviews about the place she’d been considering for treatment. “That really stressed me out, because I was like, ‘What if I go there and they end up making me sicker?’ I thought, ‘That’s it. I just want to refund all the money. I don’t want to go at all if I have to decide right now’.”
For now, the money is staying in the fund until she can decide the best course of action. “Right now, I feel I’m where I’m supposed to be. I’m stable, I’m feeling the best I’ve felt in a long time and I’m just doing so well that I don’t want to do anything that’s going to upset that right now.
“It’s hard, though. I’m always torn between two mindsets of, ‘go now and get ahead of the game’ and ‘why fix what’s not broken?’”
She’s looking at other options too, in Germany and Spain. “Just trying to decide where I feel will be the best fit for me. But whatever happens, the fundraising was done for my healing and it will be used for that.”
It infuriates her that accessing treatment should ever come down to who has money and can travel for it. “It just shows how far behind our health system is. We literally have the basics here and obviously the basics will work for some people, but it’s not enough for others. It’s disappointing, and it makes you wonder how many people are slipping through the net and not being given a fair chance.”
Whether it sits comfortably with her or not, she knows she’s in a privileged position being able to raise such a sum, thanks in part to her public image. It’s a public image that might soon reach new audiences. After several years, an amateur documentary crew has just wrapped on filming her story and the hope is that the finished product, The Life of Tri, can have a premiere down the line
“Hopefully we can get a venue and everyone can get dressed up. I don’t know what will happen with it but it’s a nice little memoir to have, all the big moments over the last couple of years and interviews with my friends and family.”
It’s a sign of our growing willingness to talk about illness, particularly terminal illness, that has led to certain people becoming the ‘face’ of various causes. Just as Charlie Bird has become a face for motor neurone disease, and Vicky Phelan for cervical cancer, Trina Cleary has, to some degree, become recognisable as the face of breast cancer in Ireland.
“I cringe when people say stuff like that to me. I’m just Trina from Wexford, sharing my story in the aim of getting someone else to go and get their lump checked. When someone messages me to say, ‘I went and got my appointment’ — it makes my heart spin.”
It’s a fickle fame, she says, noting if she were to close her Instagram she could very easily slip off the radar. Ultimately, it’s a fame she’d obviously rather not have.
“Sometimes, I wish people didn’t know my name, particularly for the reason they do. It would be different if I was talented, like a singer or something. But if they know my name and if they remember why they know my name, and they think, ‘Oh, I need to check myself’ — then that’s amazing. But I’d never consider myself to be a celebrity and I don’t do it for any clout or gain.” She smiles. “I’m just doing me.”
Instagram: @tri_cleary. Photography by: Nikki Stix. Make-up by: Emma Ryan.
Daffodil Day is on Friday, March 25, 2022. Take part and take back from cancer any way you can this Daffodil Day at cancer.ie/daffodilday.ie Anyone with concerns or questions about cancer can contact the Support Line on Freephone: (1800) 200-700
https://www.independent.ie/life/daffodil-day/i-didnt-just-want-to-live-from-scan-to-scan-trina-cleary-on-living-with-breast-cancer-climbing-mountains-and-why-she-shares-her-story-41449602.html ‘I didn’t just want to live from scan to scan’: Trina Cleary on living with breast cancer, climbing mountains and why she shares her story