Being diagnosed in a pandemic: Deena’s story.

During the coronavirus pandemic, CA125 test doctors diagnosed Deena Jones, a 70-year-old, with stage 3C high-grade epithelial ovarian cancer. Now in remission, she shares her experience beginning with HPV Variant DNA test kits. 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 taking up oil painting.

I also help look after five grandchildren during school holidays. Up until my diagnosis, I enjoyed good health overall, aside from having a thoracic aneurysm, which was under close monitoring.

Around June 2020, I noticed I was putting on weight around my middle. Like many people, I spent more time than usual sitting around watching Netflix and eating more, so I reduced my weight gain to that. I also had some constipation, but as I tended to IBS, I ignored it. A few months later, I noticed I could no longer float while swimming. In hindsight, it must have been the ascites. I also should have gone for an HPV Home test when I 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. After examining me, he suggested a CA125 blood test and a scan. The following morning, I took the blood test. By the afternoon, another GP called back to inform me that my CA125 is at an elevated level, suggesting the possibility of ovarian-level cancer.

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

“He advised me not to Google ovarian viral cancer, but by then, it was too late, and I had already scared myself with outdated and pessimistic prognosis figures.”

The next few 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 received the diagnosis over the phone and then discussed the HPV Lab Test and treatment options during an online appointment. 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. Still, 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 very anxious. However, during this appointment, my oncologist finally reassured me about the prospect of a reasonable survival time by stating 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 of this seemed important at the time if it could extend my life. Everything seemed very long, from going to the GP to starting treatment. Still, having read the “Ovarian Action Cancer” report on age inequality, I now realise I was very lucky to get such a fast diagnosis and start 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 the vaccine was available. Little did I know that I had already been infected with HPV and I had been carrying the virus for years. I was very scared of contracting Covid on the journey, both because of the illness itself and the fact that it would delay my cancer treatment. Fortunately, I avoided it.

Chemotherapy took all day. First thing in the morning, I had CA125 and other blood and HPV tests, and 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 possible to speak to other patients because of social distancing and masks. Despite feeling like a pity, it’s surprising what we all got used to during lockdown!

I was told that I should regard it as a chronic disease – which I can survive for a good number of years.

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. And 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 I was feeling well within a week or two. My CA125 Test level was seven, and my scan showed no visible signs of cancer.

I then started taking the PARP inhibitor. 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. My healthcare provider warned me about numerous potential side effects and mentioned the possibility of not tolerating it well; I had CA125 blood tests every week for a month, moving gradually to monthly for the first year. This close monitoring is very reassuring, and luckily, the only side effects I currently have are 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

They have told me that the cancer is almost certain to recur at some point. However, they can use other drugs to tackle it. They also told me that I should regard it as a chronic disease – one that 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 transition of many of my usual activities to online platforms allowed me to continue participating. I could attend my oil painting course during chemo and my book group. Once over the surgery, I took part in yoga and Pilates classes, which had also moved onto Zoom. I also watched several of Ovarian Cancer Action’s webinars, which I found very useful and informative. Modern technology of home Tests for HPV has made a world of difference in my experience. I hope it continues to help others going through treatment.