When tragedy found her family in 2022, Carron woman, Saoirse Rafferty, decided that the best tool she had to help her cope was writing.
Having trained as a journalist and creative writer, Saoirse leaned heavily on these skills following the death of her brother Rohan from a brain tumour. As part of National Brain Tumour Awareness Week, Saoirse will be hosting a ‘Write Your Story’ workshop series for the carers of people diagnosed with a brain tumour at the Clare Cancer Support Centre in Kilnamona from Saturday, October 26.
“I loved English at school but I really started writing more when I went to college and studied Journalism, English and Psychology in Galway. I was doing a lot of newspaper writing and writing for radio, but slowly I found myself getting more interested in creative writing,” she told The Clare Champion.
“I studied in America for a year and there I discovered literary journalism, which is a more creative form of journalism.
“I did a lot of creative writing and creative non-fiction at that time. I was also away from home for the first time ever and I found that I was journaling quite a lot. I found that it helped me a lot with my mental health and wellbeing.”
Rohan was diagnosed with a brain tumour in 2018, when he was just 24 years old. A healthy and active young man, the diagnosis was a shock to the whole family.
“His eyesight started to bother him and he just seemed tired. We were thinking of everything that it might be but we didn’t think of a brain tumour,” she said.
“I remember he went to football training one day and he said he was struggling to solo and to keep up, which wasn’t like him.
“My mom decided to bring him into Galway hospital and they thought there was something on the brain. We were all in shock then, but it made sense given the different symptoms. It was a massive shock for all of us. I couldn’t believe it.”
Two weeks after his diagnosis, Rohan underwent a successful surgery in Beaumont Hospital in Dublin. Because of the positioning of the tumour on his brain stem, the surgeons were not able to remove all of it.
After a second operation, Rohan underwent radiation therapy in late 2018 and was back to work and living something approaching a normal life early in 2019.
“For four years things were okay. He did annual check-ups and, with the radiation, the tumour continued to shrink. It was a bit of a relief each time he went to an appointment. You’d be scared before hand, but we kept getting positive news,” said Saoirse.
“In March of 2022, he started to feel unwell. He was travelling in Brazil at the time and he wasn’t feeling right. As soon as I heard that, I had an awful feeling. He flew back from Brazil and went for a scan and they found that the tumour had grown back and it had grown large. He needed immediate surgery.
“It was a difficult time, it was very scary. We didn’t know what the outcome was going to be. I think we all had more hope the first time around. After the second surgery, he lost a lot of mobility in the right side of his body. He was in hospital for a few months and we were travelling up and down between Dublin and Clare.
“He began to regain a lot of his strength and mobility but unfortunately his tumour started to grow again, but it was growing very fast. We were told that, realistically, there was little more that they could do.”
At this point, Rohan became part of a trial chemotherapy treatment and returned home to Carron.
“The community really came together to fundraise for us and our family. We were so grateful for that, it helped us to get Rohan home,” said Saoirse.
“He came home that summer and passed away in the autumn of 2022. We were just so happy to have him at home.
“We were able to spend time with him, his friends could come over and see him and he had the comfort of home.”
Throughout all of this, Rohan always encouraged Saoirse to write and explore her creative side.
“I was at a loss at what to do with myself. Rohan was our main focus and I became one of his main carers. So I started writing more and it gave me a therapeutic outlet,” said Saoirse.
“In addition to that, I started a blog online called A Good Kind of Scary. When Rohan became unwell, it made me realise how life can change in and minute and how it is worth taking a chance while you can.
“This was a way for me to write about fear, and overcoming fear through my life. Rohan was really supportive of it. It was a way for me to share my writing and my creative writing. It really helped me through that time while I was at home with Rohan.
“It gave me a space to focus on me and my writing and a sense of purpose. Rohan encouraged that a lot. He would sit with me and I would read to him. He would tell me to keep doing it. It became something I could share with him.
“When he passed away, it slowly became a space where I could talk about him, about my grief and the difficult emotions that come from having someone you love that is gone.”
Starting this weekend, Saoirse will host a series of workshops at the Clare Cancer Support Centre where other people can learn to deal with grief, stress and loss through writing.
“Writing and creating can feel lonely, something that you do in private. So I wanted to find a way that it could be of more service to people,” she said.
“It is a workshop for people who might be going through things and might want to come into a group setting to write, to create and to share if they want to. It is important for people to know that they are not alone in it.
“It can really be a help if you are caring for someone. You can nearly lose yourself in that, so it is nice to have a space for a creative outlet, to make sure that you are caring for yourself in some way.”
Saoirse’s blog and podcast are available on agoodkindofscary.com while more information on her workshop is available from braintumourireland.com.
Andrew Hamilton is a journalist, investigative reporter and blogger who has been working in the media in Ireland for the past 20 years. His areas of special interest include the environment, mental health and politics.