Lockdown was challenging for the best of us, but for one woman, Vijaya Varilly, it brought about a non-COVID related, life-changing cancer diagnosis. But, she says, she feels incredibly lucky to have had her disease picked up during this surreal time – especially as stats show a significant drop in cancer diagnoses throughout lockdown. Rather than the usual estimated 30,000 people diagnosed with cancer in April, this year there were 7,500 fewer people diagnosed. In England, urgent referrals for suspected cancer are down 60% from pre-pandemic levels, and 600,000 people missed their smear tests, clearly showing what a drastic impact the coronavirus crisis has had. Here, V tells her story…
Swallowing down another paracetamol, I willed the cramps in my stomach to ease up and the pounding in my head to relax. I’d suffered with severe period pains and headaches for years and had finally been referred for tests, having convinced myself it was endometriosis (a gynaecological disorder that causes intense pain to sufferers, but is notoriously hard to diagnose). I was told that as my smear test wasn't due until later in the year, I'd be sent for biopsies and a colposcopy, with the results arriving in two weeks.
Then all of a sudden, the world was tipped upside-down. Boris Johnson held a breath-holding press conference and told the nation that due to coronavirus, we would be entering into lockdown. One of my first thoughts was, ‘At least I’ll now be near a toilet next time the heavy bleeding starts’.
Just six days after my tests, a letter arrived asking me to attend an appointment accompanied by “one other person” to review some “mild to moderate changes” found in my results. My first instinct was to call the hospital and ask if it was really necessary for me to attend in person. I was picturing invisible COVID-19 germs lining the hospital floors and walls. I was told that, yes, I did need to be there in the flesh, as this wasn’t something that could be discussed over the phone. Somehow, though, at that point I still wasn’t worried. I just thought it was the next step to dealing with endometriosis.
Driving to the hospital with my husband, Owen, I turned the music up and rapped along, my mind more preoccupied with all the emails I needed to answer that afternoon rather than my impending test results. In the waiting room, Owen and I sat two chairs apart to observe social distancing rules, until the nurse popped her head out of the door and said, "You’re our last one for the day, you can bring your plus one in." After a few quick pleasantries were exchanged, the doctor uttered the sentence that changed everything. "Your results came back unexpected; you have cervical cancer."
It was like something out of movie, the room became a blur. Everything sounded distant. I couldn’t take anything in, and my chest physically hurt as my heart split in two. I was then shocked again when the doctor explained it was only by chance that I’d been diagnosed, as the type of cancer I have, adenocarcinoma, doesn’t always show up on a smear test. It was a complete and utter fluke that it’d been picked up during my biopsy and colposcopy.
My only symptom – painful periods – the doctor later told me, was also wholly unrelated to my cancer. I felt both lucky and devastated simultaneously. They couldn’t pinpoint the stage my cancer was at yet, which of course sent my thoughts spiralling ever further. The words that kept ringing in my ear were "radical hysterectomy" – the doctor wasn’t saying I needed one necessarily, just that it was "a possibility". But it didn't matter. I had cervical cancer.
I always thought that if you regularly attended your smear tests and they came back clear, that you’d be absolutely fine, so to say that I was floored by the news was an understatement. I’d also never realised that there’s more than one type of cervical cancer. Overall, there are two main types: squamous, which develops from a type of cell that covers the outside of the cervix at the top of the vagina; and adenocarcinoma, which develops from a different type of cell found in the cervical canal (the endocervix). The research shows that only around 13-20 in every 100 cervical cancers (13-20%) are adenocarcinomas.
The medical staff left us to have a moment alone. I saw my usually stoic husband cry for only the second or so time during our relationship. I was completely silent during the car journey home, thinking 'I've had the period pains for so long, the cancer must have been there for years'. Not knowing the staging was torture. As was thinking about telling my family, in particular my twin sister.
Calling them, I felt numb. The responsibility of wanting to protect them weighed heavily, as I wondered if it would be better or worse had I been able to deliver my diagnosis in person. I knew my twin would feel as though she had been diagnosed too, we're so close. Without hesitation, she pledged she'd shave her head with me in solidarity and carry my children, if it came to it. We’re identical and she joked we'd both look like two brown boiled eggs without hair.
We decided not to tell Owen's family until we had more information and, knowing that many of my friends were having a tough time, I didn't want to share the news with them either (COVID had shaken everybody, key workers were putting in shifts around the clock, Black communities were battling against racial inequality – I felt guilty sharing my own problems). By the end of the day, I was exhausted from crying.
The next day, I took deep breaths before logging onto a Zoom meeting, a stiff smile plastered on my face. I only told three people at work, who needed to know. Like many companies, the PR agency I worked for had a furlough system in place, meaning we'd each be signed off for a period of time on a rotational basis. Luckily, I'm close to our business director, who let me choose when I wanted to be in or out of work depending on my mental state.
Lockdown felt like both a blessing and a curse at this point – it offered a safe, quiet bubble for me and Owen to retreat into as we digested the news and waited for test results. I didn't have the pressure of having to explain to people why I was less chatty in the pub after work (or have to worry about getting drunk, blurting it all out and crying in front of my colleagues). I could feign normality during virtual quizzes and pretend everything was fine for an hour or two. But the long stretches of time in the evenings and on weekends felt unbearable; I couldn't travel to see my sister or distract myself with.
At the same time, I also found myself growing frustrated listening to people complain over Zoom some days, about not having a garden or being able to see their family for Easter. I know everybody's problems are relative, but I did just want to scream at the screen, "You don't know what kind of week I've just had!"
My husband was amazing at running to the corner shop to fulfil my chocolate demands and buying me pity takeaways. At holding my hand. Talking about the cancer when I wanted to, changing the subject when I didn’t. He was relentlessly positive. Google became my enemy, whisky a great medicine.
Finally, testing day came. The CT scan went smoothly, as I made awkward small talk with staff about house prices. Then came the MRI scan, which was to be conducted in the cancer centre across the road. Owen wasn't allowed in because of contamination, so I ventured there alone. In some ways it was better going alone, it made me feel more in control. Sitting in the waiting room I felt like a fraud, seeing others clearly with a later stage cancer, whereas I looked totally healthy.
After it was all done, I had to wait another week for my actual results telling me how advanced the cancer was. Again, it was supposed to be an in-person appointment. I was fine for a few days, managing to push it to one side... but then my period came. Although doctors had said it was unlikely to be related to the cancer, I was still convinced that the pain must be linked. I sobbed on the floor between emails, once again shovelling down an obscene number of painkillers. Moments later, I got a call from the doctor telling me that the plans had changed; I'd hear my results over the phone. My first thought was ‘Amazing! The news can't be that bad’, but then my heart sank as I thought, ‘Oh my God, what if it's so bad that I'm at risk going in.’ In an effort to take my mind off of it, Owen and I watched 'easy' TV shows to fill our time – Friends, Peep Show and The Office. I felt a tugging in my chest every time there was a baby reference.
When the day of the phone call came, a soothing voice asked how I was and then, miraculously, confirmed that my cancer was stage one. My heart could have exploded, and I could see that Owen felt the same. They explained that I'd need keyhole surgery, with a chance of chemo, radiotherapy and a hysterectomy in future. He informed me I may have problems conceiving and carrying a child to full-term, but that was okay. I felt able to emotionally manage that, knowing that the cancer had been caught early.
Unbelievably, after two operations (the first being unsuccessful), I got the all the clear just as shops, cafés and gyms began to re-open. As I was still deemed high risk, at first I found myself still making up excuses to avoid meeting friends in the park for a socially distanced catch-up. A few weeks ago, I came clean, telling them all about my lockdown experience.
Lockdown afforded us all a chance to evaluate what really matters in life, and having the possibility of mine being cut short definitely only further cemented that. Thankfully, it left me feeling sheltered rather than imprisoned; I'm grateful for the privacy, connection and intimacy I experienced in my little London flat with my husband, during this draining, warped and difficult time.
I'm now eager to speak up and address women everywhere, along with some shocking statistics relating to cancer and how we talk about our intimate health issues: one in eight say they're less likely to attend their smear test now, than they would've been before the pandemic. That is in addition to a backlog of 1.5 million appointments missed annually, the main reason being ‘embarrassment’. We can't let feeling uncomfortable stop us from seeking the healthcare we need. Although my particular type of cancer doesn’t always reveal itself on a smear test, if I hadn’t have pushed for a biopsy, following my gut feeling that something was wrong, who knows how long it would have taken for that diagnosis to be made.
The NHS were – and are – amazing. While it would’ve been great to have had more regular check-ups (and to have consistently been able to speak with the same doctor), my cancer diagnosis in lockdown truly showed me how hard they work. Seeing it in person, during a pandemic, was a wake-up call. I still experience a sense of dread when the phone rings, but everybody on the other line (doctors, nurses, admin staff) were always kind and patient with me – a real mix of pragmatic and sensitive doctors. Each and every one invaluable.
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