Posted on Tuesday 3 March 2020
Sinead from Belfast was just 21 years old when she was diagnosed with ovarian cancer and had both her ovaries removed. Treatment caused her to experience early menopause and she was unable to spend time with her friends and be financially independent. Here, she tells her story.
“I was a normal 21 year old student at university when I became ill. With classes and working a job at night, I was so busy I didn’t really recognise intense bloating as being a symptom or the other warning signs. I just put it down to my hormones. But after a few weeks, I looked as though I was 8 months pregnant, and was admitted to A&E.
At first, I was told it was an infection; that they would drain some fluid to take tests and so they decided to keep me in overnight. They came back to me the following day and I had a CT scan and told me I was being transferred to the gynaecology ward in another hospital.
After my consultant re-looked at my scans they determined it was ovarian cancer and drained the fluid as it was close to going around my heart. They rushed me in for an emergency biopsy the following day and to drain the rest of the fluid as it kept building up. All in all, I had 14 litres of fluid drained.
They did more tests and scans to start prepping me for surgery. It was about a week before my operation that they warned me that if they might not be able to save any healthy parts of my ovaries and there was a chance I would experience early menopause. I was the youngest person in the ward, with only one nurse being around the same age.
Surgery day came, and I still didn’t know how much of my ovaries could be salvaged – if any. The surgery took twice as long as scheduled, and they told me afterward that they had removed both of my ovaries and fallopian tubes, meaning I would start menopause and be unable to have children.
I’d never heard of ovarian cancer in young people and all of a sudden I was diagnosed. I had only just turned 21. I felt like I should really be starting my life, but it was all being taken away before I could even think about it. It was really upsetting and overwhelming.
The doctors said they could connect me with counsellors, but it was hard enough to process myself, I didn’t want to sit and talk about it when I didn’t know how to feel. Meanwhile, all my friends were going on day trips, posting pictures to social media. Instead of being with them, I was stuck in hospital with a cancer diagnosis.
“But having my CLIC Sargent Social Worker Laurena really helped. She was more like a friend than a social worker. It was so nice to know that someone’s there to talk if you need it; just the support and having someone texting you to ask how you are and how you’re coping.
Along with the emotional support, Laurena also helped me regain a bit more financial independence. I had to stop work because of my treatment, so I was left with no money at all, and I felt lost. I felt like I was back to being a child, asking if I could borrow money from my parents or even my brother to go out with friends. And I felt really bad because they would spend £20 a day for parking at the hospital to spend all day with me during treatment, or for check-ups. With the petrol and everything, it adds up quickly.
Laurena helped me apply for grants – having money there so I could buy things for myself was brilliant, it made a huge difference. I’d lost so much weight during my treatment that I didn’t have any clothes that fit anymore, but because of Laurena I was able to go out and get some for myself.
Laurena has continued to help me and my family even though the surgery is in the past; my mom knows she can always call her for a cup of coffee, and she also looked into finding help for my sister who is coping with my cancer now.
Without CLIC Sargent I honestly don’t know how I would’ve coped. Laurena’s been there constantly, I can just text her and she’s able to help me, or she’ll find a way to help me.
I still have days where I think ‘Oh my god that happened to me’ and I can’t get my head around it. People will say ‘You’re so strong, how did you cope? You’re amazing’, and so on, but you don’t feel it. You have no choice other than coping with it.
I know from experience that going through cancer, whether for other people my age or even younger, is heart breaking. If there’s just one other young person with ovarian cancer who feels like they’re on their own I want them to know that I was in the same position and it gets better. I’ve since changed my goals, and put a new perspective on life.”
Sinead is sharing her story for Ovarian Cancer Awareness Month.