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‘WEIRDEST THING EVER’
I can only swallow by twisting my neck after doctors moved my gag reflex to my EAR – it could have killed me
She was first diagnosed with anorexia
A WOMAN now has her gag reflex in her ear after a “rotten lychee” looking tumour was removed from her neck.
Doctors cut a “huge” lump out of the nanny’s neck and grafted part of her nerve to her ear.
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This restricted her ability to swallow and paralysed her right side.
Bella Johnston, 30, now has to turn her head and use just her left muscles in order to swallow.
"I can't swallow straight," she said in her video.
"I choke all the time. I am always coughing thing up from my lungs and I get chest infections all the time," she added.
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Bella was told she was "on the brink of death" after doctors discovered a 7cm by 5cm tumour in her neck which required urgent surgery to remove it.
The operation cut through all the nerves in her throat, leaving the right side of her tongue and oesophagus paralysed.
Bella, a nanny, now living in Hackney, London, had to relearn to swallow after the operation "cut everything out of her right side".
The tumour, she said, was wrapped around her jugular vein and vagus nerve.
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She added: "They grafted part of my nerve to my ear. I have my gag reflex in my ear.
"It's the most weird thing ever.”
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The 30-year-old added she had a nasal gastric tube for a while and was originally told she would only ever be able to eat soft foods again.
"Doctors said I'd never eat a sandwich again. I love sandwiches so I thought 'nope',” she said.
She added: "Through a lot of trial and error and with a speech phycologist I now touch my chin to my shoulder.
"It closes my wind pipe and uses the left muscles that are strong to push the food down.
"I can't swallow face head on."
The nanny, from Sydney Australia, was 14 when she first started getting symptoms.
These included extreme weight loss, which saw her weigh a staggering 43kg at one stage.
But because of her frequent trips to the bathroom to throw up and inability to keep any food down she was diagnosed with anorexia and bulimia.
"I was throwing up three to four times a day.
"I was only able to eat a piece of toast. I was living on Red Bull and painkillers.
"I had accepted I was going to die."
She underwent four to five years of treatment and was sent to family therapy.
Bella said: "I had regular weigh ins. I put paper weights into my pockets and wore ankle weights."
After leaving home at the age of 18 Bella said she was on “the brink of death” but it was only when she visited hospital with a burn that doctors became worried and took her for an ultrasound.
What are the symptoms of throat cancer?
Throat cancer is a general term some people use to describe a cancer that starts in the throat. Doctors do not generally use this term. This is because there are different types of cancer which can affect the area of the throat.
Signs and symptoms of throat cancer depend on the specific type you have.
Some of the possible symptoms of throat cancer include:
- a lump in the neck that does not go away
- sore throat that does not get better
- difficulty swallowing that is not improving
- changes to your voice, such as hoarseness.
It was then that they discovered the cancerous lump on her throat, which required a 10-hour long operation to be removed.
She said: "They said my neck looked like lychees but rotten. "It was so gross."
After her operation Bella lost control of her right arm and her oesophagus was paralysed.
Her mouth stopped working, eyes dropped, and she didn’t sweat on the right side of her face.
Part of tongue paralysed too, meaning she could only chew on one side and couldn’t lick all of her teeth.
Bella was able to go home in September 2014 and has been getting MRIs every six months for the last 10 years.
She has had 15 operations to try and repair her vocal cords and plastic surgery to help with her dropped eye and right side of her face.
Bella said: "I felt like I lost my entire identity.
"I had cancer but it's never stopped affecting me.
"Surgery cut me out of my body.
"I've been spending the last 10 years trying to get into the body - it feels foreign to me still."
Bella had been convinced her cancer could come back for the last decade - but now she has just turned 30 she excited for her future.
She said: "It's only now that I have realised that I actually want to live.
"I never really planned life in my thirties.
"I thought it [the cancer] was going to come back."
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Bella met her partner, Harri James, 24, this year who has helped her changed her view on herself and life.
She said: "I'm accepting I'm alive."
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