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Mother had tongue cut out and rebuilt using her arm

 

A mother has spoken of how she had to have half of her tongue cut out and rebuilt using part of her arm during her agonising battle with mouth cancer.

Heather Johnson’s problems began with what she believed was just a small ulcer in her mouth. It later turned out to be a sign of a stage four tumour. 

It was only when, overwhelmed by pain, the 29-year-old, from Lichfield, Staffordshire, started crying in the street that she insisted on seeing her GP, who immediately referred to her to hospital.

There she was given the heartbreaking diagnosis, forcing surgeons to perform an eight-and-a-half hour operation to rid her of the tumour, breaking her jaw, removing her tongue and the glands in the neck – where the cancer had spread to – in the process.

They then cut a piece of flesh, about 2 inches, from her left arm, together with a small artery before grafting them on to what remained of her tongue, in her mouth.

Since the operation, the ‘chatterbox’ has endured the loss of her voice and has struggled to eat properly – losing over two stone and dropping from a size 12 to a six.

Despite the side effects, Mrs Johnson, speaking for the first time, said it was ‘important’ she had the surgery so she could see her daughter, Rose, two, grow up.

Heather Johnson's problems began with what she believed was just a small ulcer in her mouth. It later turned out to be a sign of a stage four tumour

Heather Johnson's problems began with what she believed was just a small ulcer in her mouth. It later turned out to be a sign of a stage four tumour

Heather Johnson’s problems began with what she believed was just a small ulcer in her mouth. It later turned out to be a sign of a stage four tumour

Mrs Johnson said: ‘Doctors told me they’d have to remove part of my tongue. My reaction was quite matter of fact. 

‘I just wanted them to cut the cancer out and for it to be out of my body. It was more important that I would get better to see my little girl grow up.’

‘It was a massive operation, but it is amazing what they were able to do – although they did warn me there was a risk that it might not take and that I wouldn’t be able to eat or drink again.’ 

She added: ‘I was completely unable to talk. I had to communicate through writing everything down, but after being under anaesthetic for so long, even that was really difficult to begin with.

‘As a chatterbox, losing my ability to communicate with people was really hard.

‘My new tongue was a bit disconcerting at first, too. It felt a bit like having a piece of ham in my mouth, instead of a tongue.’ 

When did her problems begin? 

Mrs Johnson’s problems began with what she believed to be a small mouth ulcer on the right side of her tongue, in February 2016.

In April, the ulcer had grown and was causing her unbearable pain. Her husband, Chris, 33, said she should demand an appointment with her dentist.

The dentist was just about to lock up, but he agreed to take a quick look. As soon as he saw it, he went pale, Mrs Johnson said. 

He told Mrs Johnson that she needed an urgent referral to the Royal Derby Hospital.

She then sought advice from her GP for the same reason.  

How painful was the ulcer? 

Mrs Johnson said: ‘It wasn’t very big but it was quite painful. It didn’t look any worse than a normal ulcer.

‘The doctor recommended salt water mouthwashes and didn’t seem too concerned, because mouth ulcers are so common.’

It was only when, overwhelmed by pain, the 29-year-old started crying in the street that she insisted on seeing her GP, who immediately referred to her to hospital (pictured with her daughter, Rose, two)

It was only when, overwhelmed by pain, the 29-year-old started crying in the street that she insisted on seeing her GP, who immediately referred to her to hospital (pictured with her daughter, Rose, two)

It was only when, overwhelmed by pain, the 29-year-old started crying in the street that she insisted on seeing her GP, who immediately referred to her to hospital (pictured with her daughter, Rose, two)

Surgeons performed an eight hour operation to rid her of the tumour, breaking her jaw, removing her tongue and the glands in the neck - where the cancer had spread to - in the process. They then cut a piece of flesh, about 2 inches, from her left arm, together with a small artery before grafting them on to what remained of her tongue, in her mouth

Surgeons performed an eight hour operation to rid her of the tumour, breaking her jaw, removing her tongue and the glands in the neck - where the cancer had spread to - in the process. They then cut a piece of flesh, about 2 inches, from her left arm, together with a small artery before grafting them on to what remained of her tongue, in her mouth

Surgeons performed an eight hour operation to rid her of the tumour, breaking her jaw, removing her tongue and the glands in the neck – where the cancer had spread to – in the process. They then cut a piece of flesh, about 2 inches, from her left arm, together with a small artery before grafting them on to what remained of her tongue, in her mouth

When it continued to grow, she then mentioned it to the dentist several weeks later, when she took Rose for a check-up.

She was told it was just an ulcer and she was told to go back to her doctor for pain relief – but they also referred her to hospital.

Suspected cancer 

On May 26, at the Royal Derby Hospital, doctors told Mrs Johnson that she possibly had cancer.

She said: ‘I had been googling and it had mentioned mouth cancer and I did think it looked like that. 

‘I didn’t want to say it out loud to any of my family, but it was in my mind.’

Results from MRI and CT scans confirmed she had a stage four tumour growing on her tongue, which had spread to her neck.

The proposed operation 

To keep her alive, they told her they would have to remove part of her tongue to cut the tumour out. 

Coming to in intensive care, her mouth was very swollen, her tongue was bigger than usual and she had a tracheostomy fitted to help her breathe.

A fortnight after being discharged, she began a month of radiotherapy (pictured wearing her radiotherapy mask), followed by two sessions of chemotherapy

A fortnight after being discharged, she began a month of radiotherapy (pictured wearing her radiotherapy mask), followed by two sessions of chemotherapy

A fortnight after being discharged, she began a month of radiotherapy (pictured wearing her radiotherapy mask), followed by two sessions of chemotherapy

A week after her operation, Mrs Johnson was able to make noises with her mouth and started to learn to speak again.

MOUTH CANCER: THE FACTS

Mouth cancer can develop in most parts of the mouth, including the lips, gums and occasionally the throat.

The most common symptoms of mouth cancer are:

  • sore mouth ulcers that don’t heal within several weeks
  • unexplained, persistent lumps in the mouth that don’t go away
  • unexplained, persistent lumps in the lymph glands in the neck that don’t go away

Mouth cancer is the sixth most common cancer in the world, but it’s much less common in the UK.

Around 6,800 people are diagnosed with mouth cancer each year in the UK, which is about 2 per cent of all cancers diagnosed.

Most cases of mouth cancer occur in older adults aged 50 to 74. Only one in eight (12.5 per cent) cases affect people younger than 50.

Source: NHS Choices

Just a week after surgery – the week before her daughter’s second birthday – she was able to go home.

She said: ‘I was determined to be there for Rose’s birthday. 

‘I didn’t want her to see me in hospital, because I looked quite scary, so she’d been staying with her grandparents.

‘I was really motivated and the doctors said I did really well to get out so soon.’

Gruelling treatment 

A fortnight after being discharged, she began a month of radiotherapy, followed by two sessions of chemotherapy.

She also had intensive speech therapy and physiotherapy, to help her learn to talk again and build up strength in her neck and upper arms.

Mrs Johnson said: ‘I have worked really hard and my consultant is amazed at how well my speech is coming along. I’m back to being a chatterbox.’

But she has struggled to eat properly – losing over two stone and going from a size 12 to a size six.

Initially, only able to consume liquids, she has recently started to eat softer solid foods, like white bread.

Hope for the future 

Mrs Johnson added: ‘I’m not sure how my taste buds will develop, but they are starting to work again. It’s about just doing a little bit at a time.’

Doctors believe they have now removed all of her cancer and she hopes, after a scan scheduled for December, that she will be given the all clear. 

She said: ‘We’re looking to the future now. I’ve been signed off work until February but, hopefully, I can go back before then.’

To donate to Mrs Johnson’s fundraising, visit here.  

 

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