Ciara Relays Her Survival Story

Clare’s first Relay For Life, in aid of the Irish Cancer Society, took place in Tim Smythe Park over 24 hours from 2pm last Saturday. It was an event for the whole community to remember those lost, to support those who continue their fight, and to celebrate survivors. In an interview with The Clare Champion Lissycasey woman Ciara Lynch speaks about her cancer journey having just graduated when she was diagnosed with oral cancer. 

“THERE is something powerful about walking in silence and in solidarity”, cancer survivor Ciara Lynch said, after participating in Clare’s first Relay For Life in aid of the Irish Cancer Society.
The soon to be 30-year-old said the event was an emotional but inspirational one.

Ciara, a national school teacher who survived oral cancer in her early 20s, is the new chairperson of Ennis Musical Society and was joined by society members who held a strong presence on the Fair Green for the 24 hours.

“It was a great team bonding experience for us. It was immense. I didn’t think I’d have as many people come, it was extremely emotional on the night.” she said.
Indeed, many in the society had experienced their own losses and the group was there to lend that shoulder and listening ear.

“To see the survivors start out on the lap by themselves was inspirational, and it gives hope that there are some of us that do survive. It was great to see, because many of the survivors were quite elderly and for some of them it was their first or second time going through it, so that is obviously hard. While there were others younger than me, most of the survivors were over the age of 40,” Ciara said.

The Kildysart National School teacher’s brief encounter with cancer came at that vibrant time in a young person’s life. “I was in college. When it started first it wasn’t obviously cancer. I started to get sick in second year. I was going out on teaching practice and I wouldn’t be able to talk when I’d get home because my tongue was in so much pain. It started as a small ulcer and gradually took down the whole side of my tongue,” she said.

Initially she thought, “everyone gets mouth ulcers, or everyone gets sick in college”. She took no notice of it for a while, but as it got more painful she went to Shannondoc and her GP.

“They gave me steroids to suck on it which was the most painful thing. The whole side of my tongue was constantly bleeding. I was going in and out of the doctor and they didn’t really know what to do with me. It was a year on that my GP said there is something wrong here.”

Following a referral to two ENT specialists, it was thought Ciara had Behçet’s disease, a rare disorder that causes blood vessel inflammation throughout your body.

“They put me on an infusion treatment, but nothing was happening, I was getting worse, if anything. They didn’t know what to do with me because it was taking over my whole tongue and it was causing me to not be able to eat on that side of my mouth, and I was holding half of my face in a funny way. It would be swollen after a day of teaching because you are talking all day long. I had several biopsies but they weren’t showing up anything, even though it was presenting as this really angry-looking thing. The ENT in Limerick then referred me onto Dublin Dental and that’s where I met a Professor Stassen, who also worked in St James’.

“Professor Stassen didn’t like the look of it and took another biopsy. He took a rather large strip of my tongue, or so I thought at the time, and it turned out that there were cancerous cells in that, so I was diagnosed with oral cancer.”

Having received the diagnosis, Ciara said she was glad to finally have an answer. The course of treatment was a surgery to remove more of her tongue. To avoid it spreading to lymph nodes in her neck, they conducted a second surgery, which removed lymph nodes from the her right side of her neck, leaving her with an obvious scar.

“I think I’m naturally optimistic and I didn’t think there was anything I could have done to prevent it or improve the situation really. I wasn’t extremely emotional about it. It was just what it was and you just had to deal with it. You had to get it cut off because you can’t have radiotherapy on your mouth”.

During this time, Ciara had finished college, securing her primary education degree and continued working as a substitute teacher until her first surgery, which was in March 2012. She didn’t return to work until September of that year because she was unable to talk .

“The first time I was in for St Patrick’s Day and I was like a demon inside in the hospital because everyone was outside having the craic and my friends were sending me pictures on Facebook. I was in for about two weeks the first time, and then another two weeks the second time. Thankfully I wasn’t in hospital that long, but to me it seemed like ages, but in comparison to others I was lucky,” she said.

Following the surgeries, Ciara said she thought she was “banjaxed”.

“I had 52 staples in my head. It was really gross and people were shocked when they saw it, because that is a lot of metal. It was a six-hour operation and I’ve seen pictures of the surgery, they open you up like an envelope so it’s pretty cool,” she said.

Part of Ciara’s recovery involved a year of speech and language therapy to relearn how to speak.

“The first three months were very hard. I had a voice but I couldn’t make coherent speech. I didn’t have great speech until the September or October. I thought it was awful. I had to learn how to say a lot of things again because you are using all of your tongue for talking and when you lose part of it then it creates a lisp and you can’t form part of different words, I lost a lot of my S’s and my Sh’s, which probably wasn’t a bad thing,” she laughed.

Asked if her attitude has changed post-cancer, Ciara said, “I am more about, ‘What will be will be’ now. I thought life was going to go a certain way. My outlook on life now is, do as many things as you can to make yourself happy because you are only here for a while”.

After the surgery in April, Ciara went inter-railing in July. “I was 23-24, so I went and did that for a month and then I went back to work. People thought I was mad, but the doctors said there was no reason not to go. I needed to live my life and not to worry. If something is going to happen it’s going to happen whether you are sitting at home watching Love Island, [or on a train in Eastern Europe],” she said.

The Lissycasey woman added that she is lucky she didn’t have to experience chemotherapy and says in a way she feels as though she hasn’t really been through cancer in the same way that those who have had chemo or radiotherapy.

“What they removed the second time didn’t have any cancerous cells so thankfully I didn’t have to have chemo.”

However, Ciara has been left with a constant reminder of her brush with cancer. “My scar is really obvious, and not every cancer patient has a physical reminder so obvious as mine, but I don’t really care about it. I’d have caught people blatantly staring at my scar and I just had to get used to that. What could I do about it?

“It was weird to look at for the first while, and a lot of friends were more bothered about it than I was. They would say things like, ‘How are you going to cope now putting on the tan?’ and normal things that young girls in their 20s want to do. I guess people try to cover their blemishes, but this was a big thing, I couldn’t cover it up.”
Starting out as a substitute teacher, Ciara found her pupils constantly asking her what happened to her and to try to minimise the impact on them, while making herself sound “cool” she had a witty reply.

“I used to tell them an alien came out of my neck. They would say, “Woah, Miss!” Some would ask again, what happened, and I’d say I had a surgery. There is no point in sugar-coating it, especially with the older children,” she said. She explained it was important to her to just get up and carry on with life, while maintaining a balance, and offered some words of advice for other young people.

“You have to recuperate, but you have to live your life as well, and I was 23 and I was missing birthdays, 21sts, and I thought I have to go to them, but at the same time, I knew when I was wrecked that I needed to take time off for myself. When you’re not well, you shouldn’t be forcing yourself.

“You need to live your life for yourself rather than giving in to the FOMO – fear of missing out. It is hard when you’re young. You ignore pain or a bruise. In your 20s you feel invincible and you don’t think something like this will happen at that age,” she said.

She said naturally her family and boyfriend Brian are a great support to her and she recognises that it was hard for them, as she is the youngest in the family.

“They wouldn’t have expected it to happen. It’s such a random thing, especially the type of cancer I got. You’d often hear of cervical cancer and prostate cancer, and the more common ones.”
Although statistics would show that smoking and alcohol are tre main contributors to oral cancer, Ciara said she was never a smoker, and this was one of the reasons it was so surreal.

“None of my lifestyle choices would have created it. I think it was just what life had in store, but look, I was lucky. The vast majority of people with oral cancer are aged 60 and upwards and they are usually people who smoke or who drink heavily. I wasn’t drinking heavily but I was going out in college. I probably socialised in the smoking area of places, which probably didn’t help, but I wasn’t a smoker at all. Every time I drank I knew it didn’t help, but you want to go out with your friends and have the craic but afterwards I’d drink maybe two litres of water to counteract the effect of the alcohol. However bad a hangover is for a normal person, for me it was just horrific,” she said.

One of the main reasons Ciara was determined to do the Relay for Life was because her niece did her first relay for life two years ago. “My niece had leukaemia. She got it two years after me, so I was quite cross because I didn’t understand why someone so young would get it, she was only two-and-a-half. She had done the relay two years ago in Letterkenny and walked her survivor lap at four years old. She’s six now. So when I was asked to do it, I wanted to do it. She’s living with it now and getting on with life now and we are so close,” Ciara said.

She really felt connected to her niece and to all those who had lost someone close to them during the relay. “I think Relay for Life was great and our group were so willing to volunteer. Why there was such a big response from our group was, everyone knows someone. The Irish Cancer Society does great work. They did help me out when I was in hospital.

“I went to the daffodil centre in St James’ and they were really nice. I was fortunate that I didn’t need them again. I thought it was great, they gave me nail varnish and shower gel and things I probably didn’t think I needed in hospital, but it gave me a bit of a boost, I was delighted with myself. When you are in hospital for something like this, your confidence and self-esteem wouldn’t be the best and I popped down to them. I probably wasn’t able to talk but they gave me a bag of stuff so it was lovely,” she said.

She said, the relay really reminds you that every statistic is a person, a family, and has a ripple effect on a whole community.

“My time with cancer was short – hopefully, and hopefully it won’t come back again. The reality is for many people they have it for years and they are battling it at every turn and some don’t make it. That’s why for me sitting in the survivors’ tent was strange, because everyone in there had a story and every story was different, and fingers crossed all their stories will be positive,” she concluded.