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Nola: I ignored my symptoms, but a research trial discovered I had ovarian cancer

05 October 2023

Nola - In Hospital

Before Nola was diagnosed, she experienced many symptoms but didn’t realise they were associated with ovarian cancer. She was diagnosed with stage 3c serous cancer in May 2022 - after taking part in the NHS-Galleri trial.

Nola shares her story to raise awareness of the importance of early diagnosis and ovarian cancer research trials. She also talks about how she has found strength and positivity along the way.

“I first experienced symptoms when I was 60 years old. I was a teacher but felt exhausted and stressed and I thought it was because of the extra work that the pandemic had forced onto me. I decided to finish teaching and became a care worker. I loved my new job but looking back now, I was extremely achy around my pelvis. I put this down to the job and nothing sinister.

Unfortunately I had to stop working because my parents became unwell and I became their carer. During this time, I experienced more symptoms like constipation and I had what could only be described as a ripping pain in my tummy. I had tried to lose some weight during this period, and I managed to from everywhere but my tummy. I had some overhanging weight which was a strange shape - it looked constantly swollen.

I ignored my symptoms and didn’t visit a GP, because I was so busy caring for my parents.

I became very constipated and I experienced a ripping pain in my tummy

Nola

Whilst looking after mum and dad, I received a letter inviting me to take part in the NHS-Galleri trial. The trial was looking into the use of a new blood test to see if it can help the NHS to detect cancer earlier.

They took a sample of blood and said that I would either be put in the tested group or the non tested group. Fortunately for me I was put in the tested group.

The test identified that I had ovarian cancer, and I was referred for a hospital appointment in two weeks time. Here they identified a tumour on my left ovary, and a biopsy discovered that I had a high-grade serous ovarian cancer stage 3c.

When I found out how terrible my cancer was, I was sat at home with my partner and daughter. The doctor told me that it was terminal and I had three years to live. I just sat and cried and screamed when I put the phone down.

I didn’t want to die so soon. The anxiety interrupted my sleep. I woke up in the middle of the night with poems I’d created about my cancer and I couldn’t settle until I’d written them down and got the anxiety out of my head.

My first visit to the Christie Hospital in Manchester made me realise just how bad things were. I was desperate to go to the toilet by the time I arrived and I just wanted to cry because the need was so great. This was a symptom of my cancer which increasingly got worse as time went on.

I did not expect to discover that the cancer had spread, including into my fatty stomach tissue, my appendix, and my womb and both ovaries.

Nola

I underwent four cycles of chemotherapy. The treatment was hard, but it worked well and the tumour shrank enough for me to be operated on.

I had a huge nine hour operation followed by a hot chemo wash, where the chemicals were heated to 42 degrees and pumped in and out of my stomach. I was placed in critical care for four days but was out of hospital within a week because of the excellent care I received.

After six weeks I was back on chemotherapy which totally drained me, and I kept picking up infections - because my white blood cell count was so low.

Nola - during treatment

Initially, I was in remission and taking 200 mg of niraparib a day. A CT scan showed no evidence of cancer, but unfortunately my tumour marker has continued to rise.

Unfortunately six months on, my cancer has reared its ugly head in my stomach lining. The doctors said I need to go back on chemo for six months. It will be a very strong chemo and not the same as last time as it was so severe on my white blood count - it was, barely existent.

I’m living in hope that I will cope with the chemo and that it will work. I have stopped taking the niroparib and have been told to enjoy a holiday before the chemo resumes in 3 weeks time. I won’t stop fighting this horrible disease but I’m also not as scared of death as I was when I first found out.

If it wasn’t for the NHS-Galleri trial, I wouldn’t be alive and here writing this now.

Nola

I am so grateful to the NHS-Galleri trial, the doctors and nurses at the Christie and the support of my son, daughter, partner and friends.

I’ve had the time to enjoy a few months of actually feeling well and I enjoyed being flown to Edinburgh by my son who has just become a pilot. I’ve had a lovely mini break with my daughter and a lovely holiday with my partner too. I appreciate everything so much more.

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I have recently experienced the deaths of two friends, one of whom had cancer. They didn’t have time to say their goodbyes or make memories like I have done. I’m very grateful for waking up each and every morning.

I’ve really taken a step back and I no longer feel like a hamster on a wheel. I appreciate the smallest things in life - like food and spending time in nature.

I’ve found that always having a sense of purpose encourages me to face the days ahead. I like making things for people and giving them as thank you gifts. It’s sad to say that cancer has actually resulted in me experiencing some of the happiest moments of my life.

Everyone dies at some time but I am planning to try and live as long as I possibly can."

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Persistent bloating, persistent stomach pain, needing to wee more frequently and difficulty eating are all key symptoms of ovarian cancer – but are commonly linked to other, less serious illnesses.

Other ovarian cancer symptoms might include indigestion, back pain, changes in bowel habits, unexplained weight loss, postmenopausal vaginal bleeding and extreme tiredness.

It's vital that you take action and visit your GP if you are experiencing any of the symptoms. If left undiagnosed and untreated, ovarian cancer can become more serious over time.

Download and use our downloadable symptoms diary to help you keep track of your symptoms.