Keen swimmer Emily Shattock, from Paulton, Somerset, was just 14 when she was struck down with dizzy spells and weakness – which was later diagnosed as symptoms of Langerhans cell histiocytosis
Image: Ellen McArthur Cancer Trust)
A teenager was shocked when what she thought was an inner ear infection was actually diagnosed – as a rare cancer.
Keen swimmer Emily Shattock was just 14 when she was struck down with dizzy spells and weakness.
Doctors originally suspected she had an ear infection as she was prone to getting them, reports Somerset Live.
But Emily was later diagnosed with Langerhans cell histiocytosis (LCH) – a rare disease that is classified as a type of cancer by the NHS.
She now wants to raise awareness of what the symptoms are and what support systems are available to help children and families going through cancer.
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Ellen McArthur Cancer Trust)
Emily, now 19, said: “I am a big swimmer and I remember feeling dizzy and I’d have episodes of feeling faint and weak.
“I used to train with Team Bath and I’d remember getting out of the pool and feeling so out of it.
“At first they thought it might be labyrinthitis, an inner ear infection.
“It was a very slow process to work out what it was from July to September.
“I had already had some surgeries on my ears because I was prone to bad ear infections and I went back to see my surgeon.
“They found what they thought to be a cyst in my ear that was destroying the balance on my right side and it was quite big.”
After a biopsy, Emily, of Paulton, Somerset, was informed of her diagnosis.
She said it was hard to comprehend at first, especially as some classify LCH as an auto-immune disease and others as a cancer.
The NHS inform website says: “LCH is an unusual condition. It has some characteristics of cancer but, unlike almost every other cancer, it may spontaneously resolve in some patients while being life-threatening in others.
“LCH is classified as a cancer and sometimes requires treatment with chemotherapy.”
Emily added: “At first the diagnosis was really confusing because of the lack of research into it.
“In the week before the news I just had one of those feelings, I knew it was going to be bad. It didn’t really hit me for a while. I just thought this is great, for goodness sake I’ve gone and got cancer.”
Emily then had to undergo gruelling chemotherapy treatment.
“It took a few days for it all to sink in, to think about it and then treatment started,” she said.
“They said I wouldn’t lose all my hair but it started coming out in chunks so I decided to shave it all off.”
Emily, has just finished her A-levels at Beechen Cliff School in Bath and is now in her gap year working at Lush in the Southgate Centre, before starting at Bangor University in Wales.
She said she couldn’t have got through it all without her “incredible family”.
“It was really hard for the other children at school to understand what was going on,” she said.
“I didn’t have close friends who understood as I was off so much.
“Not many 14-year-olds know what to say to a friend who is ill and I think I experienced that, the comments weren’t always great and I think that’s because they didn’t understand.
“Childhood cancer is such a taboo topic and people don’t know the right things to do or say. I think that needs to change.
“My family were amazing, especially my sister Georgie, 18, my parents and my Auntie Sam and cousin Alicia.”
Emily’s treatment lasted a year.
She added: “It was awful to lose your hair, it’s your safety blanket, something you can hide behind.
“It is such a prominent feature for anyone but slowly I started to notice my other features more and I learned how to love how I looked again.
“I remember my Nanny Pearl, who I adore, saying I looked like Sinead O’Connor and I just loved that. She kept telling me I looked great anyway and it really helped.
“Saying that though, getting my wig through the Little Princess Trust was the best day. I got to try new colours and styles and ended up loving this red wig. I still dye my hair red to this day.
“It took another six months after treatment to build up my strength again. I missed so much school and had to repeat a year to catch up.
“LCH isn’t something that can be cured completely – but it can be monitored and managed at the moment mine is now under control.
“Due to the position of the tumour – so close to my pituitary gland, had it been left any longer all of my hormones would have been messed up.
“My reproductive system and everything would have been destroyed.
“As to when I got ‘better’, I’d say that’s difficult.
“Physically, after the six months of no further treatment I felt strong but psychologically it’s just another thing.
“That is why the Ellen McArthur Cancer Trust is so amazing. They take young people aged eight to 24 on days out, like sailing, and they give you an incredible support system.”
The trust was founded by the record-breaking round-the-world yachtswoman, Ellen MacArthur, in 2003.
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The pandemic has meant children with cancer are more isolated than ever before which is why what the trust does is so important, Emily says.
“I couldn’t have done the last five years in remission without them,” she said.
“They help you pick up the pieces of a life which has been shattered.”
To mark her remission Emily celebrated by swimming 11 miles across Lake Windermere to fundraise for the trust.
She trained three times a week and completed the challenge in five hours and 40 minutes.
Emily raised more than £2,000 and counting for the trust and she is now training to become a graduate volunteer with them to help other young people going through cancer.
You can donate to her fundraising page here.