Being diagnosed with ovarian cancer in a pandemic: Fiona's story

70-year-old Fiona Jones was diagnosed with stage 3C high grade epithelial ovarian cancer during the coronavirus pandemic. Now in remission, she shares her experience.

I used to work as an academic psychologist, lecturing on topics like work stress, until I retired about 10 years ago. Since then I have spent my time volunteering, going to the cinema, doing Pilates and recently I have taken up oil painting. I also help look after five grandchildren during school holidays. I was generally pretty healthy up until my diagnosis, with the exception of having a thoracic aneurysm, but that was being closely monitored.

Around June 2020, I noticed I was putting on weight around my middle. Like many people, I was spending more time than usual sitting around watching Netflix and eating more, so I put my weight gain down to that. I also had some constipation but as I had a tendency to IBS I ignored it. A few months later I noticed I could no longer float when I was swimming. In hindsight, it must have been the ascites. I also noticed I did not have much appetite. The day after I got back, I rang the GP. They have a triage system but they rang back the same morning.

A swift diagnosis

When I described my bloating, the GP gave me an appointment the same day and, after examining me, he suggested a CA125 blood test and a scan. I had the blood test the next morning and by the afternoon another GP had rung back and told me my CA125 level was raised, suggesting the possibility of ovarian cancer. 

This was a shock particularly as the only person I knew with ovarian cancer was a 32-year-old who died within three weeks of diagnosis, over 20 years ago. I was under the impression that if I had ovarian cancer, I would probably not live much longer.

The next couple of weeks were a blur and it seemed a long anxious wait for a scan and its results. During this time, I became more bloated, nauseous and in pain. I was diagnosed over the phone and then had an online appointment to go over the treatment options. I had the choice of seeing him face-to-face in the hospital but this would have been with PPE and with no possibility of having anyone with me. So I opted for Zoom, with one of my daughters present. He told me that chemotherapy followed by debulking surgery was the way to go, and advised me not to Google ovarian cancer, but by then it was too late and I had already scared myself with outdated pessimistic prognosis figures.

Words matter

I met my oncologist in early September. Because of Covid rules I was on my own and very anxious. However, at this appointment I was finally reassured that I had some prospect of a reasonable survival time when my oncologist said that I would need to see her for the next ten years. She warned me of all the side effects of chemo, including hair loss, but none to this seemed important at the time if it could extend my life. This process from going to the GP to starting treatment all seemed a very long time but having read Ovarian Cancer Action’s latest report on age inequality, I now realise I was very lucky in getting such a fast diagnosis and start to treatment.

Chemotherapy during the pandemic

One of the worst aspects was travelling to the hospital (which had no car parking) during the worst months of the pandemic and before vaccine was available.  I was very scared of getting Covid on the journey both because of the illness itself and the fact it would delay my cancer treatment. Fortunately I avoided it. 

Chemotherapy took all day as I had blood tests first thing in the morning then I had to wait for the results before they put a drip up which took four hours. I could not have anyone with me and it was not really possible to speak to other patients because of social distancing and masks. That felt a pity but it’s surprising what we all got used to in lockdown!

The surgery was an ordeal, involving a day in intensive care and several days without food. I was in hospital for a week and could not have any visitors. I was told to completely isolate after surgery for at least three weeks, including over Christmas. I live alone and my bathroom is on the top floor. It would have been impossible. Fortunately, my oncologist supported my plan to go to my daughters. I finished chemo in March and within a week or two I was feeling really well. My CA125 was seven and my scan showed no visible signs of cancer.

Niraparib

I then started taking the PARP inhibitor, Niraparib. This is a drug that has only very recently been available for people in my position. It continues to treat the disease by preventing cancer cells from repairing so that they die. I was warned about lots of possible side effects and that I might not be able to tolerate it. For a month I had blood tests every week moving gradually to monthly for the first year. This close monitoring is very reassuring and luckily, the only side effect I currently have is aching joints and constipation. I will stay on this as long as it works and I can tolerate it. 

For now I feel better than I ever expected to feel again. I have been told the cancer is almost certain to recur at some point but there are other drugs they can use to tackle it. I was also told that I should regard it as a chronic disease - which I can survive for a good number of years.

Like most people during the pandemic, I was extremely grateful to have Netflix and Zoom. The fact that so much of my normal activities went online meant that I was able to carry on being involved. I was able to attend my oil painting course during chemo, and my book group. Once I was over the surgery, I took part in yoga and Pilates classes which had also moved onto zoom. I was also able to watch a number of Ovarian Cancer Action’s webinars which I found very useful and informative. Modern technology has made a world of difference to my experience and I hope it continues to help others going through treatment.

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