Tongue cancer survivor ‘can never kiss husband again’ after surgery

Jamie Powell, a 39-year-old special education worker from Orange County, California, was diagnosed with tongue cancer in March 2020 after noticing a raised bump on her tongue. She underwent an eight-hour operation to remove half of her tongue and some lymph nodes in her neck, followed by 30 rounds of radiotherapy.

Although she has been given the all-clear, Jamie says she will never be able to kiss her husband again and has had to learn how to talk and eat again. She now hosts a podcast with other tongue cancer survivors to raise awareness about the disease.

Jamie said: “It was unbelievably sad when I realised I couldn’t kiss my husband, Jonathon, 40, 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.”

Before her diagnosis, Jamie said she “didn’t even know you could get cancer of the tongue” and explained how when she “began to heal up” her “tongue felt like a foreign object in my mouth”.

Jamie’s journey began in December 2019 when she noticed a bump on her tongue.

Initially, her dentist assured her that it was nothing to worry about, but when the bump grew bigger, she sought further medical advice. After a biopsy, she received the devastating news on March 5, 2020, that she had tongue cancer.

Jamie said: “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.

“They scheduled me for surgery on March 23 and the US went into lockdown on March 16 and I wasn’t sure it was going to happen.

“It was stage 3 cancer, and I was in hospital for 10 days. I was on a feeding tube and I couldn’t talk.”

Following the surgery, which involved removing half of her tongue and replacing it with tissue from her leg, Jamie faced a long road to recovery. She had to undergo speech therapy to train her tongue to function properly again.

Unfortunately, the surgery alone was not enough, and she had to undergo radiotherapy in April 2020. Despite the challenges, Jamie has made impressive progress and has been declared cancer-free.

Jamie 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 decided to share her story to raise awareness about tongue cancer and provide support to others going through a similar experience. She believes it is crucial for dentists to check not only teeth but also the tongue for any signs of cancer.

She explained: “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.”

She added: “Your dentist should be checking your teeth and your tongue – I didn’t know that was something they should be doing.”

Although Jamie has made significant progress, she admits that she still has “bad days” and experiences difficulties with eating. However, she remains determined to work through these challenges and continue her recovery.

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