Bella Johnson, 30, noticed she was suddenly losing weight when she was 14 but found herself on the “brink of death” with a huge tumour lump in her neck that needed to be removed
A woman who had a tumour removed from her throat needed to learn how to swallow again – but it has left her gag reflex in her ear.
Bella Johnston, 30, was 14 when she first started losing weight suddenly but says it took four years for doctors to diagnose her with anorexia and bulimia. After leaving home aged 18, Bella was on the “brink of death” and had a “huge” lump on her neck. But it was only when she visited hospital with a burn that doctors became worried and took her for an ultrasound. She was then told she had a 7cm by 5cm tumour in her neck and was told she needed a surgery to remove it.
Bella had a 10-hour operation where medics cut everything out from her right hand side as it was wrapping around her jugular nerve and vagus nerve – which controls the digestive system. They grafted part of her nerve to her ear – which means her gag reflex is in her ear.
This also meant Bella had to relearn to swallow so she could eat again – which she has now taught herself to do by putting her chin to her shoulder to close her wind pipe. Bella, a nanny, now living in Hackney, London, said: “They had to cut everything out of my right hand side.
“It was wrapped around my jugular vein and vagus nerve. They grafted part of my nerve to my ear. I have my gag reflex in my ear. It’s the most weird thing ever. I had a nasal gastric tube for a while and my original diagnosis was I’d only eat soft foods for the rest of my life.
“Doctors said I’d never eat a sandwich again. I love sandwiches so I thought ‘nope’. 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.”
Bella – who is originally from Sydney, Australia – was a teenager when she first started getting symptoms. She said: “I lost a lot of weight really suddenly. I had a horrible cough that wouldn’t go away. My parents started taking me to the doctors. Because I was presenting like it and throwing up and not being able to eat I was diagnosed with anorexia and bulimia.”
She underwent four to five years of treatment and she was sent to family therapy. Bella said: “I had regular weigh ins. I put paper weights into my pockets and wore ankle weights.” Bella moved to Melbourne aged 18 to be a singer and started to notice her vocal range was slipping.
She said: “I was 43 kilos. I was on the brink of death. 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.”
Bella was trying every alternative therapy possible and a huge lump had grown on her neck. In August 2014 she burnt her hand and went to the doctors. She said: “They said ‘that’s fine, but what is wrong with you?’ They sent me for an ultrasound.
“The nurse was all chatty and then immediately called in the doctors. I knew something was wrong.” Bella was told she had a giant tumour in her neck and needed a surgery to remove it. She said: “It was a relief. I was really comforting in a way. They were telling me I wasn’t crazy.”
Doctors thought Bella had a paraganglioma – a rare tumour in the neck – but didn’t think it would be cancerous. But when they opened her up the doctors said her throat looked like the “inside of a rotten fruit”. She said: “They said my neck looked like lychees but rotten. It was so gross.”
After her operation Bella had lost control of her right arm and half of her oesophagus was paralysed. She said: “My mouth stopped working. My eye dropped. I didn’t sweat on the right side of my face. Half my vocal cords are paralysed. Part of my tongue is paralysed on the right hand side. I can only chew on one side. I can’t lick all of my teeth.”
Bella’s biopsy revealed her tumour was cancerous and she had to undergo radiotherapy for six weeks. Doctors were convinced the cancer had spread to her brain – and told her she might only have months to live. But further tests revealed it had not spread. 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 since to try and repair her vocal cords, remove other tumours and 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.”
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.”
