After three surgeries in three months, Susannah understands the importance of research in developing better treatments for ovarian cancer. She decided to help us raise awareness of our research by sharing her story in our BBC Lifeline Appeal...
I’ve had so many challenges through my diagnosis and treatment – but my husband Daniel and kids Ese and Uyi have kept me going.
Long road to diagnosis
I started feeling unwell early in the year and visited the GP with pelvic pain and bloating. I was told it was IBS and was prescribed some medicine to treat it, but the symptoms didn’t go away. The pain got so bad I went to A&E and this time they said it was constipation. I really felt I wasn’t being listened to. Finally, after I brought up the possibility of it being a gynaecological issue (I’d had a fibroid during my first pregnancy), I was sent for a scan.
It was summertime. The scan appointment took weeks to come through, but once I’d had it, things moved very quickly. The GP called to say they’d found a mass. I was promptly referred to the hospital and had lots of other scans. I also had a CA125 blood test, which came back very high. Doctors started using the word “cancer” and I was booked for surgery immediately. It was like riding a rollercoaster. In the early autumn I had extensive surgery, with a radical hysterectomy. Finding out I needed that surgery was really difficult because we’d been trying for a third child. Now I realised I’d wouldn’t have that same chance again.
Our lives turned upside down the day we found out that this was stage III ovarian cancer. I had severe bowel problems after the first surgery, which led to a second surgery six weeks later resulting in a stoma, and then a third surgery to reverse the stoma. Things were very difficult at that time because I was finding it very difficult to eat or drink anything and I lost a lot of weight so I was fed through my veins for a while. But eventually things returned to normal after the third surgery, and I could eat my favourite foods again – including fruit and vegetables which I could not have whilst I had the stoma. I was discharged home from hospital after three and a half months.
After recovering from surgery, I had six rounds of chemotherapy, and also found out I have a BRCA1 mutation. My younger sister Temilolu, who was going through breast cancer treatments at the same time, was told that she most likely also had the mutation. When we spoke about this we realised our mother may also have had it – she died from cancer of unknown primary, but it affected her abdomen with fluid in her lungs and we think it could have been advanced ovarian cancer. Sadly, my sister’s breast cancer relapsed and she died in 2017 and now I’m determined to set up a foundation in her name, to raise awareness of ovarian cancer and the BRCA gene mutation at home in the UK and back home in Nigeria.
After months of hospital visits, I began adjusting to my new normal and went back to work. I was still being monitored by the doctors with blood tests every three months initially and then every six months when things became stable. I had a recurrence in 2020, during the pandemic. It was devastating to hear the news. I had to have another surgery and some more chemotherapy. Now I’m on olaparib, a maintenance drug that should stave off the need for further chemotherapy and help me live well for longer. After my last surgery I wanted to get my strength back, so I used Target Ovarian Cancer’s yoga and relaxation online sessions as a way to rehabilitate myself. They were a lifeline during the pandemic months.
Target Ovarian Cancer’s research into newer and better treatments for ovarian cancer has never been more needed. It’s so important to me to be able to take olaparib, one of the newer maintenance treatments, and I want to see more women get access to this type of treatment. Research is the only way we’ll find more of them.
If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: firstname.lastname@example.org. We're open from 9am until 5.30pm, Monday to Friday.