Rachel Parsons - I Don’t Want People to Go Through What I Went Through: Raising Awareness of HPV

Rachel Parsons, from Coventry, the UK, spent six months with a painful ulcer in her mouth before she was finally diagnosed with oral cancer at the age of 37 years. Her surgery was successful but a year of complications and side effects nearly ruined her marriage. 

She explains how her cancer was repeatedly missed by her dentist, and how she helped her five children understand that their mother would need treatment. 

She also recounts the help her and her husband had to rebuild their relationship, and how they have dedicated themselves to breaking down the stigma around human papilloma virus (HPV)-related cancer and raising awareness about HPV vaccination.

I was always fine  

I am a mum to five wonderful, beautiful children. 

Before my diagnosis, my life revolved around my firefighter husband Tim and our five very small children. Although they’re not so little anymore. I’m the smallest now!  

I had some mobility problems, but I smoked only three cigarettes a day and I didn’t drink alcohol. I was always fine. 

There’s nothing to worry about 

Then on Boxing Day 2007, I found a lump in the right side of my cheek. It was like an ulcer, so I didn’t think anything of it. It was Christmas, and life carried on. 

Come January, however, the lump was still there. Around 8 January, I went to the doctor and had showed him. He said I needed to go to the dentist. So I made an appointment and he said it’s fine, you don’t need to worry about it. 

So, life carried on. But the ulcer continuously got bigger. I kept biting it and the bigger it got, the more I bit it. 

In June, I went for a six-month check-up. He did the children first and then me, and again he told me everything was fine. I said: “What about that thing in my mouth? It’s been there since January.” He just said: “Yeah, yeah, it’s fine, it’s fine. There’s nothing to worry about.” 

But I insisted. I said: “I’m worried and I’d really prefer it if you’d refer me to the hospital.”  He sighed and said: “Okay, fine.” 

Wow, that was quick 

I went back to see my doctor at the end of July. He said: “I thought I told you to go to the dentist.” I told him I did, and he told me he was going to refer me but I’d heard nothing. So, the doctor took one look at my mouth and picked up a piece of paper with the letterhead of a local cancer centre, and I knew it was serious. 

That was the Monday, and I had a phone call that afternoon to come into the hospital on the Thursday. I thought: “Wow, that was quick.” 

At the hospital, the doctor told me they needed to do an emergency biopsy. They gave me an appointment to get the results the following Monday. Somewhere in the back of my mind, I just knew it was cancer. 

The night before I went to get the results, I couldn’t sleep, and I was lying in bed thinking I’ve got five small kids and what if it really is cancer. I sat up in bed and had this kind-of premonition of what would happen the next day. 

In the morning, Tim had gone shopping because he ran a youth group for young firefighters and was taking 100 children plus my own camping for a week. 

In the meantime, I got a letter saying I needed to go for a computed tomography (CT) scan, so I rang them and said I’m coming in that afternoon anyway, is there any chance I can have the scan done then? My oldest son Jake, who was 11 at the time, asked: “Mum, why do you have to go into the hospital earlier?” I just turned around and said: “Because I think I’ve got cancer.” 

I phoned Tim and said you need to get back, I need to go to the hospital earlier. It took him about another hour and a half and by then I was on the ceiling, full of anxiety, just needing to go. 

I went with my mother, and had coffee with a friend who worked at the hospital. It was all happening just how I’d seen it in my mind the night before, and I wasn’t scared to see the consultant anymore. When the nurse called us in, the doctor said: “We’ve got your results.” I said: “It’s cancer,” and he said: “Yep.” 

A shark attack 

My mum broke down and cried but I didn’t because I thought: Thank God for that, something is going to be done now. This thing in my mouth was just horrible. It was very ulcerated, very nasty. 

The doctor explained what he was going to do but obviously when you’re told you’ve got cancer you don’t really listen to anything at all. You just hear the word ‘cancer’ and you shut off. 

When I left the hospital that day, the cancer nurse came out with me. She used to be my orthodontist nurse when I was 15 or 16 years of age and I asked her: “Am I going to die?” That was my biggest fear: Leaving Tim with the kids and me not being there. She said: “I’m really sorry, I can’t answer that.” 

I phoned up Tim and, because he’d annoyed me, I told him I’d got cancer and put the phone down. Looking back, I think: Oh my God, how heartless. By the time I got back home, he was a broken man. 

My three older kids were aged eleven, seven and five years and they knew a little bit of what was going on, but the other two were just tiny. They didn’t understand at all. So, we told them my poorly arm was going to be attacked by a bear and my neck was a shark attack. My tummy, because that was where they would take the skin from, was to be attacked by a jellyfish. 

Cancer nearly destroyed us 

Two weeks later, I went in and had a nine-and-a-half hour surgery. Fortunately, I didn’t have to have radiotherapy but the year after the surgery was horrendous. I kept having infections and had to go back into hospital nearly every month for the whole year, either for that or to have the skin flap inside my mouth shaved. 

It was absolutely awful, and Tim and I didn’t really talk to each other. I didn’t tell him how I felt and he didn’t tell me how he felt. So, we drifted apart to the stage of thinking: You know what, I don’t want to be with you anymore.  

The Minister who married us all those years before came and spoke to us. I told him I’m not interested in staying with Tim. I said he’d not helped me, he’d not supported me and he wouldn’t speak to me.  

Tim broke down and said: “I’m a fireman, I’m supposed to be able to help people, and there’s nothing I can do.” 

Then we started speaking, and we were very fortunate. The firefighters’ charity gave us a few days away just for Tim and me. It was the first time we’d been away from the children, apart from going to the hospital. 

That was sort-of the making of us getting back together after cancer nearly destroyed us. I know so many people where cancer has literally ruined their relations, so we were very lucky we didn’t let cancer beat us. 

Working tirelessly to raise awareness 

Since then, Tim and I have continually helped to raise awareness about mouth cancer. When I was diagnosed, there was unfortunately nothing apart from really horrible photos of old men with oral cancer. 

The only thing I found was the Mouth Cancer Foundation. They were my first port of call, and for the first time I felt there was somebody there for me. 

It was only around two years after I was diagnosed that HPV became more prominent. I went to see my consultant and asked whether my cancer was HPV-related, as I had precancerous cells in the cervix when I was 21. 

He said he didn’t know, and my cancer hadn’t been tested for HPV. He told me I would have had the same surgery, so it’s not worth finding out. 

But then I went for a gynaecological appointment and I was diagnosed with HPV, so my mouth cancer is either due to HPV or it’s very coincidental. 

It’s very important that people are more aware about HPV and I am very active in trying to get people to listen. I work on the helpline for the Mouth Cancer Foundation and I had a phone call with a lady who had been diagnosed with HPV and was absolutely devastated because she thought her husband would leave her.  

We need to try to get that stigma away from the idea of it being only transmitted via sex or oral sex. 

What about protecting my boys? 

My daughter has been vaccinated against HPV, so at least she’s protected. But what about my four sons? It’s really important that boys get vaccinated too. They could get cancer elsewhere but head and neck cancer is so invasive. It’s right there in front of you, you can’t hide from it. 

I don’t want my boys to have to go through what I went through, when there isn’t any need for it. There’s a vaccine out there that can help protect them. Why can’t they be vaccinated against HPV?