As we mark World Immunization Week (24th to 30th April 2023) highlighting how HPV vaccinations are a key component of the roadmap to Cervical Cancer Elimination, Fiona Ness tells her personal story of cervical screening over two decades, and recalls her feelings of “grief and relief” that her experiences will not be those of the next generation, as she drove her daughter to get “a wonderful gift” - the HPV vaccine.
I’m in the Mater hospital in Dublin in 2009 discussing Scotland’s complex relationship with North Sea oil with a very nice man who is taking a chunk out of my cervix. I’m embarrassed and humiliated and sore. But not really. Is it over?
That wasn’t so bad, was it? Yes it was.
I’m having a LLETZ procedure for high grade cell changes in my cervix. It’s my second of three – and third time around, I’m no more sure of what a LLETZ is for, than I was when I had my first one in Scotland in 2006. Back then I’d gone to my family doctor with irregular bleeding, believing myself to have symptoms of an extremely early menopause. She’d taken the opportunity to grab me for an overdue smear test instead. My first test had been so awful that I’d never gone back. The name of the thing didn’t help. Have you had your smear? A horrid little word.
My parents had opened my hospital appointment letter and called me in a panic – something about me having cancer cells and needing to come home. I wasn’t yet 30.
The smell of burning. A doctor with expressive eyes and my mother crying in the waiting room. Me rolling my eyes and not wanting to talk about it. Done. Sorted. Don’t look back. I go for some yearly smears before lapsing back to shoving invite letters in a drawer. Not understanding that this thing could come back.
A few years later at a pre-natal check-up in Ireland, I am convinced by my practice nurse to have another screening test with the new Irish service, CervicalCheck. And because she is very nice and I don’t want to be rude, I hop up on the table once again.
My result, when it comes back, has me rattled. I need a second LLETZ. Whatever I’d had back in 2006 is back. In retrospect, my ignorance of what was going on in my own body was astounding. But I did at least start to really worry about cervical cancer. I had two children to consider so when I got my Irish invitations for yearly tests, I became fastidious about attending.
When the news comes that I need a third LLETZ I begin to ask serious questions of my body. What am I doing wrong? Why does this keep recurring? Am I going to develop cancer? When I turn up for my LLETZ, I pluck up the courage to ask the doctor some of my ‘why me’ questions.
She asks me if I smoke; I don’t. She asks what I do for a living and when I respond that I’m a journalist, she nods and says prosaically that it’s a stressful job. And that’s it. The nurse colposcopist takes over and I’m up on the table, having my hand held, again.
When I become pregnant for a third time I have a miscarriage and haemorrhage at home. I am in hospital for a while. Another pregnancy follows and I’m brought in for an extra scan at 19 weeks to measure the length of my cervix. The doctor tells me this is standard for anyone who’s had multiple LLETZ, because every time you have a procedure, a bit of your cervix is taken away. If your cervix is less than 3cm you’re at high risk of miscarriage. This is something I hadn’t heard of before; or maybe – given my track record – when I was told I just wasn’t paying attention.
At the scan, amongst other things, I find out I have Just Enough Cervix to hold in the baby.
When I next return to screening post-childbirth it is for a HPV test. I am told this will give the best picture of whether my abnormal cells are a problem. If I don’t have HPV, I can stop worrying about the abnormal cells and stop the yearly tests. Sometimes cells are just abnormal, but without HPV they rarely become a problem and usually change back. The test shows I do not have HPV and can be reassured at this point in time that I do not have problematic cell changes. Good news.
And then the wave of CervicalCheck 2018 breaks over my head.
I decide that if the screening programme won’t continue yearly screens, I will pay for a private, yearly test. But now my cervix is playing hide and seek. The doctor can’t scrape away enough cells to be tested and the results are inconclusive.
I double down my efforts to have another private smear. But now there are waiting lists for cervical checks, and the government is offering every woman a free smear. I take the free CervicalCheck test and wait over six months for my results. I’m losing weight, am anxious, terrified. No cell changes found.
I have to make a conscious decision to believe the result. It will be three more years before I have my next screen and when it happens, in 2022, it returns the same result.
In the same year, the baby who prompted my entry to the Irish cervical screening programme back in 2009 receives her HPV vaccinations invites.
We drive to the testing centre where months previously we had queued for Covid jabs. I bring her inside and feel waves of grief and relief. Thanks to vaccination, the experiences of my generation will not be hers.
“This is a gift. A wonderful gift.” I choke out.
I’m an embarrassment. She glares and sighs and rolls up her sleeve.
This is going to sting a little.
Fiona Ness is currently General Manager of Communications with the National Screening Service.
Cervical cancer could be the first cancer ever to be eliminated globally. Screening, vaccinations and treatment are key to getting us there and in Ireland, we have all the tools we need. There are many ways to support Ireland’s efforts to eliminate cervical cancer. Everyone can play a part and thousands of people are already doing so. Find out more about the part you can play.
Do you want a share your personal story about supporting Cervical Cancer Elimination? Would you like to be an ambassador for the Cervical Cancer Elimination initiative in Ireland? The National Screening Service Communications team can support you to tell your story and offer expertise. Email us to arrange a chat: communications@screeningservice.ie