A woman says she’ll ‘never French kiss again’ after having tongue cancer.
Jamie Powell, 39, was diagnosed with the disease in March 2020, after discovering a raised bump on her tongue.
She had half of her tongue removed – replaced with leg tissue – and had to relearn to talk and eat.
She then endured 30 rounds of chemotherapy before finally being given the all clear three months later.
Jamie, a special education worker, from Orange County, USA, said: ‘It was unbelievably sad when I realised I couldn’t kiss my husband, Jonathon, again.
“I didn’t realise it until I was healed and starting to feel like my former self, but all of a sudden, I just realised I wouldn’t be able to kiss him again and I couldn’t remember the last time we kissed.
‘I cried about it. I was sad. I was sad for him too – that I wasn’t going to be enough.’
It was one morning in December 2019 when Jamie woke up and noticed a bump on her tongue.
She said: ‘I thought it was just from biting my tongue.
‘I asked my dentist if I should be worried about it and they said “no, you’re fit and healthy, it’s not big deal”.’
But weeks later, the lump was still there, and it had grown in size.
Jamie continues: ‘I go to the urgent care, and they said ‘woah, we need to send you to a specialist’ and I suddenly thought this was worse than I initially thought.
‘They make an appointment with the ENT doctor for the end of February, so I had to wait a whole month.
‘I had the ENT and she immediately sent me for a biopsy straight away which had lots of needles going into my tongue which was very painful.
‘They told me they’d get back to me with the results.’
A week later, Jamie was told she had cancer of the tongue.
She says: ‘I didn’t even know you could get cancer of the tongue.
‘It was a massive shock to the system.
‘I had to meet with 11 doctors who all told me that I didn’t fit the profile for this cancer as I didn’t smoke or drink and in that time, it had grown, and it was aggressive.
‘If you have a tongue cancer or any type of mouth cancer it usually spreads very quickly because of the lymph nodes in the neck.
‘It was devastating, but it was either have this surgery or I’m not going to be around.’
Jamie was told she had stage three cancer. After the operation – where lymph nodes in her neck were also removed – she remained in hospital for 10 days. She was on a feeding tube, and couldn’t talk.
‘My entire sense of who I was being taken away,’ she explains.
‘They told me I wouldn’t be able to eat or talk the same way again.
“My husband took care of me and helped with the bandages. When I began to heal up, my tongue felt like a foreign object in my mouth.
‘I had to train it to be in the right place to talk and connect it with my brain.’
Unfortunately for Jamie, the removal of part of her tongue was not enough to give her the all clear and she had to undergo radiotherapy in April 2020.
After finally being told she was cancer-free, Jamie’s focus turned to recovery and learning how to use her tongue again.
She said: ‘In the months after radiation was done it was terrible, I still couldn’t eat.
‘I had to talk it through with a therapist and I had a hard time being around my family when they were eating.
‘I was realising everything I’d been through, and I’d have to think about the words and if I swallow or eat.
‘I had to do a lot of speech therapy and there are a lot of life long side effects from neck and head radiation – food will never taste the same and it changes your outlook on food and how you eat.
‘The tongue still feels like a foreign object, but the doctors are amazed I can talk this well for how much I had of my tongue removed.’
Jamie says she does still have some down days.
She said: ‘Eating can still be hard and I have flare ups. I’ll always have to be cautious but I’m still working through it.’
Now, she’s decided to share her story in the hopes to raise more awareness about tongue cancer. She also hosts a podcast with fellow tongue cancer survivors talking about the reality of the disease.
She said: ‘I thought it was important to share as I know how I felt.
‘There was nobody out there that looked like me and I don’t want anybody to have to feel like I did.
‘I make sure to post and talk about it because the more that I share, the more I can answer questions. There aren’t really any resources out there.
‘You think about how dynamic that muscle is and how it affects so much of your daily life.
‘Your dentist should be checking your teeth and your tongue – I didn’t know that was something they should be doing.’
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