“Looking back now, I had symptoms in January or February 2020, but it wasn’t until July when I received my diagnosis,” explains Deirdre O’Raw, who at the age of 44 was diagnosed with ovarian cancer. “I put on a lot of weight quite quickly – I put on about 10kgs (a stone and a half) in the space of two weeks. I continued to put on weight over the following weeks and months, but I just put this down to middle age and thought no more if it really. Now that I know the signs and symptoms of this cancer, I know the importance of raising awareness and that’s why I want to share my story.”

After months of persistent bloating and weight gain, one evening in July, Deirdre came down with severe pain on the right side of her abdomen. The next morning, she went to her local Emergency Department. “The pain was so striking. I knew something wasn’t right. I thought it might be appendicitis. On Friday I had the pain, Saturday I went to hospital and on Tuesday, I was told I most likely have ovarian cancer. It’s very hard to describe what goes through your head when you hear the word ‘cancer’. I’d never even heard of ovarian cancer let alone know the signs or symptoms.”

“They checked my CA-125 levels when they did my blood tests. I’ve learned now that it should be between 0 and 35, but mine was 700 or 800. That, combined with the sudden weight gain meant that doctors were very confident it was ovarian cancer, but I needed more tests and scans to get my diagnosis confirmed.”

As this was in the middle of Covid-19, Deirdre received her diagnosis alone in the hospital. “I think I went into absolute shock when I got the news. It was a very scary time. It was early on in Covid, which meant I had to go into hospital alone. Your head immediately starts to go straight to the worst-case scenario – how bad is it, am I going to die, how difficult is the treatment going to be? I had to ring my parents from the hospital and give them the news over the phone. One of the hardest phone calls I’ve ever had to make. I’m a member of the Defence Forces, and I was due to go on tour to Lebanon in the November – I was thinking, am I still going to get to go? I was in the middle of my chemo by then, so I didn’t go!”

Once more tests had been done, the extent of Deirdre’s cancer became clearer. She would require surgery, which took place in mid-August. “The cancer had spread up from my ovaries to my liver and up as far as my diaphragm. This was terrifying to hear, of course, but in the middle of receiving that bad news, my mind went to thinking at least it hadn’t reached my lungs or my heart. My surgery was extensive, I had a hysterectomy, lymph nodes were removed, my appendix was taken out, they removed tumours from my liver and tumours from my diaphragm. It took me a week to be able to walk for 5 minutes after my surgery. I was told that for the next 3 months, I shouldn’t lift anything more than 1kg – that’s a bag of sugar. Four weeks later my chemo began.”

While recovering from her major surgery, Deirdre recounts receiving a call from the Irish Cancer Society’s ‘Chemo Education’ support service following a referral. “This call was the best thing that could have happened. I was so overwhelmed following the surgery and focused on my recovery and then the next thing was chemotherapy, which I knew was going to be tough. My medical team were brilliant, but when the doctors and nurses are giving you information, it’s hard to take it all in and think of questions on the spot. The cancer nurse from the Irish Cancer Society had a medical background so could answer any of those questions I had, but what really helped the most was the practical advice of how my life would go on during the chemotherapy – basic things like creating an exercise plan, advice around diet and what to eat, how to eat, even things like advice to move away from an electric toothbrush to a softer brush. All of this practical advice was so invaluable, and I can’t thank the Irish Cancer Society enough for this support.”

Deirdre’s chemotherapy journey was quite difficult with specific side effects. “During the chemo, I experienced harsh side effects and nerve damage to my finger and toenails. This isn’t very common but can happen with the particular chemotherapy I was on. It basically meant that my finger and toenails were lifting off and causing me enormous pain. I had to wear plasters on my fingers and toes to protect me from banging off things. You take for granted how much you bang your nails off things. Even basic stuff like opening up my medication tablets caused me a lot of pain. Because of these side effects, a decision was taken to stop my chemo early. So instead of finishing out my 18-week course, we stopped after 16 weeks.”

Prior to beginning her chemotherapy, Deirdre had an appointment with her oncologist who asked her if she would be interested in allowing her tumours and genes to be studied as part of a cancer trial. “They were out of me now so if they could be studied and help future patients in some way, I was delighted to be part of that. Post-chemo then, she came back to me and explained that after they had studied my tumours, they found that I had what is called a BRCA1 somatic mutation in my genes which occurs in approximately 5%-7% of ovarian cancer patients. It basically means that this cancer was only in my genes and not in my familial line but the problem was, there is a very high likelihood of this cancer returning and growing in me. I needed to get on these ‘PARP inhibitor’ tablets for two years, which would hopefully break the cycle and reduce the chances of my cancer coming back. My chemo finished in January 2021, I went on those tablets in March and just came off them in March 2023. With that gene mutation, there was an 80% chance of my cancer returning, but that reduced to 50/50 after the medication.”

Through meeting other people affected by ovarian cancer, Deirdre became involved in an Irish Cancer Society-funded research project led by Adele O’Connor, a PhD student at University College Dublin. One aspect of this project, entitled Involving patients in healthcare research is well documented but can it work in lab-based research?, focused on patient involvement  in lab-based research. Public and patient involvement (PPI) refers to involving the group under study in the decision making throughout the research project. For example, PPI contributors, like Deirdre, can help researchers when selecting a research question. “I was delighted to get involved and one of the main aspects I was able to bring to the table was when they were looking at personalised cancer treatments, meaning individual therapies to treat individual tumours. The researchers wanted to examine PARP inhibitors, which I was on and had experienced, but they were only going to look at one type and I encouraged them to broaden this to a number of different drugs because the side effects can vary and impact that patient’s ability to stay on those drugs. It was a great feeling to have a meaningful impact like that on a cancer research project and I think it really highlights the importance of talking to patients and us being involved.”

Deirdre has decided to share her story with the Irish Cancer Society to raise awareness of ovarian cancer and encourage women to know what the symptoms are and to look out for them. “I think back to my own diagnosis and the time that was lost because I simply didn’t know what to be looking out for. It’s the experience of so many women who get this cancer, so that’s why I think talking about it is so important and getting the word out there that we need to be looking out for the signs and symptoms. The BEAT Campaign is simple and effective, and we have the spread that word: B is for Bloating that doesn’t go away, E is for Eating difficulties, A is for Abdominal pain and T is for Toilet, any persistent changes to your toilet habits. I had a lot of these symptoms, but it wasn’t until severe abdominal pain that I went to the doctors. If you notice any of those symptoms, or any persistent changes in your body – don’t wait, don’t regret not going to see the doctor earlier.”