When you’re told you have cancer, you ask yourself a lot of questions. How did this happen? Is there a reason? Why me? But when I was diagnosed with cervical cancer when I was 44, I faced another, unexpected question: how was I going to tell everyone I had cancer because of a virus I got through sex?
The first time I had ever heard of HPV was when the doctors told me I had cancer. HPV is a really common virus, usually passed on through sexual contact. My cancer was staged at 4b, meaning I was diagnosed very late, meaning that the cancer had already spread to one of my ovaries. I was devastated and convinced I was going to die, yet while I was trying to process the idea of having cancer, I was trying to understand what HPV even meant. At least I had heard of cancer before.
I knew about smear tests and cell changes which can be cancerous, but beyond that I had no idea what HPV was, or meant. Immediately, I believed I was going to be judged or ridiculed, thanks to those three little letters.
“Honestly, I was scared of having sex – I knew HPV could be passed through sex but didn’t really know how it all worked”
I experienced that stigma first-hand, sooner than I expected. When I told my partner of my diagnosis, needing his support and love, I instead heard back: “that’s an STD. I’ve not given you that. Who gave you that?” In the back of my mind I was wondering if he had given it to me too, but the truth is I was going through the toughest time of my life… and yet my partner and I were arguing about whether one of us had cheated. That’s what HPV stigma looks like.
Neither of us could make sense of what was happening, and my condition put a huge strain on not just our relationship but our sex life. Honestly, I was scared of having sex – I knew HPV could be passed through sex but didn’t really know how it all worked. The last thing I wanted to do was put my husband at risk.
From that point – going through the hardest time of my life – instead of turning to others, I shut myself away. I was scared of the questions, scared of how people would react. Lots of patients meet friends or get mutual support from the people that they meet during cancer treatment, but the shame I felt about my condition meant I kept myself to myself out of fear of what people would think. I wish I hadn’t kept all my feelings bottled up. I felt so alone. Looking back, I wish I had spoken to people more instead of keeping it all to myself. I found it hard to even tell my children.
I had a radical hysterectomy, which removed my womb, my cervix and ovaries. But, as my cancer had spread, I also had radiotherapy, chemotherapy and brachytherapy (internal radiotherapy), which took place over the course of two months. A friend told me recently I was “quietly dignified” through my treatment. But in reality, that wasn’t how it felt – inside, I was screaming and shouting.
Even though I’ve returned to some normality, I struggle with depression. I felt like I didn’t recognise myself, mentally or physically. The emotional impact of cancer is something you don’t think about when you are diagnosed. This hit me quite a long time after the diagnosis, which made recovery even more complicated. It’s still hard to talk about, but I’m trying thanks to some counselling. I try to talk especially with important people in my life, asking them what they know about the virus and whether they know it can lead to cervical cancer.
I’ve seen first-hand how so many people don’t know anything about HPV, and I know we need to get the facts out there, so no one has to feel as isolated as I did. It shouldn’t be the case that the first time you hear about what it means to live with HPV is when you’re being diagnosed with cancer, and face being blindsided by both of these things, just like me.
“If I’ve learned anything from my experience, it’s that you are told you have HPV, please don’t panic. And please don’t blame yourself.”
Although I was able to beat my cancer, I can’t say I feel totally at ease with my post-cancer body. I’ve gone through the early menopause due to my surgery, which forced me to get used to a lot of changes, and I still don’t have all the answers to the complicated questions HPV brings up, such as whether or not I can still pass it on. Not to mention the thought of cancer returning is never far from my mind.
It would have been that bit easier if I hadn’t had to contend with HPV stigma throughout my experience with cancer. It totally changed me emotionally and physically. I had no idea how I was going to get through it at times. If I had felt able to be open, I might have been able to talk to people who understood what I was going through and share the burden.
Thankfully my story is rare, and most people will get rid of HPV infection without it doing the body any harm. Smear tests mean that any changes caused by HPV can be treated before they have a chance to turn into cancer. But if I’ve learned anything from my experience, it’s that you are told you have HPV, please don’t panic. And please don’t blame yourself. It’s not dirty, it’s not embarrassing and it’s definitely nothing to be ashamed of.
20-26 January is Cervical Cancer Prevention Week and Jo’s Cervical Cancer Trust is running its #SmearForSmear campaign to smear the myths and stigma around HPV and smear tests and get the facts out. Search for #SmearForSmear or visit their website to find out how to get involved.
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