Mouth cancer survivor Kelly recalls her experience – a true story

Kelly has a lot to celebrate! Every year, on her birthday, Kelly’s young daughter, her sister and family, share in her happiness that her cancer diagnosis was made in good time. Mouth cancer survivor Kelly shared her story with me.

Kelly hopes her story will encourage other people to check for symptoms and take action because, without checks, not everyone is as fortunate.

I learned Kelly is:

• Brave – she knew she had to be for her daughter.
• Appreciative – grateful for the support of her family and the skills of her medical team.
• A survivor – and every day is valuable to Kelly because of that.

I learned that mouth cancer:

• Is easy to overlook.
• Can happen to young people too – Kelly was only 23.
• Needs us to check for it, and then check again.
• Has to be taken seriously, so if we notice a possible symptom we must ask a healthcare professional.

First symptoms

At 23 years old, Kelly was excitedly looking forward to the birth of her baby. As there were so many changes going on in her body, she didn’t pay much attention to a little discomfort in her mouth. Then, around the seventh month of her pregnancy, Kelly became more conscious of a small lump on the right side of her tongue, but it still didn’t seem like much – just the sort of thing that would sort itself out with time and go away. But it didn’t. Eating became more difficult, and she couldn’t manage hot tea anymore. Slowly it continued to grow and become more painful. But Kelly was never a complainer and didn’t want to make a big deal about a little pain.

On August 11th, the day Kelly’s baby was due, she had a doctor’s appointment. She mentioned to him that her mouth was hurting. He examined her tongue and immediately organised an emergency appointment at the hospital.

But there was a complication – the little matter of a baby due to be born. A baby who didn’t seem to be in a hurry either. While Kelly waited, the lump on her tongue felt bigger, and more painful. Her joyful anticipation of her baby’s birth was tempered by fear for her own health.

The diagnosis

Just a few days after Kelly was safely delivered of a healthy baby girl, she was back in the Oral and Maxillofacial Department of her local hospital for further examination. A biopsy was scheduled for the removal of the lump on her tongue which, by this time, was the size of a 20 pence piece. The operation took 4 ½ hours.

After a nerve-wracking week waiting for the results of the laboratory analysis, Kelly was back at the hospital with her tiny baby. Recalling the moment Kelly says, ‘It was so hard to process. My mum was there with me, but I was a single parent. I had a new baby. And a tongue cancer diagnosis. What was I going to do?”

The operation

Less than six weeks after giving birth, Kelly underwent a 9 ½ hour operation on her tongue. Reacting to medication, she stopped breathing twice but her amazing team pulled her through.

Kelly explains, “Not all of my tongue went. But they lasered off the right side, up to the middle of my tongue – took a chunk out of it. The tongue grows back, so some has. Most people have a tongue that’s shaped like an ‘n’. Mine is like an ‘r’. I also had a neck dissection as the lymph nodes were swollen. That means I have a scar around my neck and chin. The operation took so long because they had to pull layers of skin back across my face. Fortunately, the biopsy on that tissue showed the cancer was limited to the tongue, which was good news. It had been caught ‘early-ish’.”

Mouth cancer survivor Kelly’s advice:

“Have a feel! Put your finger in your mouth – feel around and see if there’s anything. When you clean your teeth, check any little bumps. If they don’t go, then visit the doctor.”

Life after cancer

Kelly is so thankful to her medical team that she’s cancer-free now. She’s so appreciative of the support of her family too. And her emotions about cancer are forever intertwined with the lifechanging experience of having a baby. “My daughter,” Kelly says, “is an angel!”

Yet, talking to Kelly I understood her recovery wasn’t easy. It still impacts on her life.

Of course, the initial recovery was tough. In hospital, she couldn’t have her baby with her all the time, just during visiting hours. But seeing her “angel” was something to look forward to, something to keep her going.

Post op, she’d expected talking to be hard with so much of her tongue missing. At first it hurt a lot. Even now, when she’s tired, she begins to lisp a bit.

Kelly didn’t realise, however, how much her attitude to her health would change. The feeling that her body had let her down and could do so again. Because she felt self-conscious about the scars around her neck, Kelly took to wearing a scarf all the time, unaware that she was making them even more of a thing. A year after her operation she went with her family to Disneyland Paris, a celebratory trip that gave her the freedom to throw her scarfs away.

“Now,” she says, “I don’t mind if people can see the scars. But rather than staring, I’d rather they spoke to me. I’d like people to ask me how I got those scars, so I can explain to them. People need to know about mouth cancer.”

The challenge of life as a mouth cancer survivor

Kelly still takes each day as it comes. Even though her diagnosis was thirteen years ago, she suffers from anxiety about her health. She still has dark days when it’s a struggle to get out of bed.

Over the years there have been other scares. A lump in Kelly’s neck required another biopsy. And a breast cancer scare turned out to be exactly that, a scare.

A side-effect Kelly believes all cancer survivors need help with is health anxiety. She hopes that these days there’s more mental health support available. When Kelly was off work for three months her need for additional support was recognised and she began a course of cognitive behavioural therapy to help her manage living after cancer. Even though the course was ten years after her initial diagnosis the therapy was helpful.

“Depression and anxiety go hand in hand with cancer.” Kelly told me. “My reason to get out of bed each morning is to look after my daughter. I’m still a single parent, so it’s me she has to rely on.” Kelly pauses, “It’s her who keeps me going.”

Through it all, Kelly is so appreciative

Kelly could not praise enough the team in her local doctor’s surgery, and the teams in the hospital. Everyone did so much for her. Every new day she  lives as a mouth cancer survivor she’s grateful to them for their dedication and skill.

Most of all, she’s grateful for the love of her family and each new day she’s lucky enough to spend with her angel daughter.

Please take Kelly’s advice!

Protect against oral cancer and check for any lumps, bumps or sores in your mouth, on your face, head and neck.

Related articles:

•  I think I have an abscess? What do I do?
•  What is gum disease and how do I treat it?
• Take action to reduce the chance of mouth cancer.
•  Help and support from the Mouth Cancer Foundation.

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