PREVIEW

WORDS BYLINE: Sarah Ingram

The sore first appeared in Emma Byron’s mouth in May 2023. She initially thought it was due to a condition called lichen planus, a common, non-infectious, and itchy rash that can affect the skin and mouth.

But the sore was painful, and when it didn’t go away for a month, she called her GP, only to be told she couldn’t have one as her symptom was ‘non-urgent’.

“By the end of July, I was continually ringing them. I was eventually told to contact the hospital, who I was under for linchen planus, but was told the earliest I could be seen was the end of September. At that point I cried out of frustration and desperation”, the 45-year-old teacher says.

That September, Emma was diagnosed with stage 1 oral squamous carcinoma cancer and was admitted to the Queen Victoria Hospital in East Grinstead, where she had part of her tongue removed, alongside 42 lymph nodes.

Serious complications left her in intensive care for weeks, but the cancer had apparently gone into remission and Emma, from Rochester, went back to work.

However, in May last year, she found a lump in her neck, and that June was diagnosed with stage 3 oral cavity sarcoma cancer.

“It was such a shock. It was just not what I was expecting. As the cancer was so aggressive, I had to make a decision whether or not I wanted to go ahead with the surgery or choose instead to have chemotherapy to prolong my life. I felt like a train had hit me. I agreed to it and had the surgery two days later.

“Once again, I found myself in the fabulous care of the staff of the Queen Vic. This time however, the surgery was far more intrusive.

“I had 40% of my tongue removed - and replaced by the skin on my arm - more lymph nodes and part of my jaw removed and replaced with a titanium plate. I also needed a tracheotomy to enable me to breath after the surgery.

“I was in intensive care for two and a half weeks and then was moved to another ward on the head and neck unit. During this time, I then had a feeding tube fitted into my stomach, which I still have,” she says.

In September that year, Emma received the devastating news that the diagnosis had changed from stage 3 cancer to incurable stage 4 head and neck cancer.

“It had metastasised to my lymph nodes and my lungs and as I would later discover, my leg. My mum, Julie, came to the appointment when I received the news that it was incurable.

“I’m her only daughter, so the worst bit was for her really. I really felt for her. I think that must be a parent's worst nightmare. When they gave me the diagnosis, I turned to her and said: “‘I’m sorry.’ I was quite calm really. Then I went into shock.”

Julie has been raising money where she works at Chatham Marks & Spencer.

Her doctor told her patients normally live between a year and 18 months after such a diagnosis, but Emma says: “I intend to live longer than that.”

“I have been really lucky to have had such amazing love and support from my mum and partner Jorge and an amazing group of friends, without whom, I would not have got to this point. I’m so grateful to them,” she says.

Emma has now had five surgeries and a raft of radio and chemotherapy, which landed her in hospital twice due to side effects. Despite all this, Emma has committed to living her life as fully as possible, carrying out fundraising, and, while she is currently unable to teach as her speech has been affected, she’d like to work part time or do something to support Oracle Head and Neck Cancer UK.

She is also supporting her health through nutrition and trying to stay as fit and stress-free as possible, which she emphasises won’t cure her, but will help her body fight the cancer.

And she has just returned from a trip to Slovenia with her partner Jorge where she flew down seven zip lines over Lake Bled to raise money for Queen Victoria Head and Neck Unit and Maidstone Oncology.

“The challenge went really well, though it was tough because I have a tumour in my leg. There were points where it was quite tough. And while I’m not scared of heights, I do have a healthy respect for having my feet on the ground,” she says.

“I want to raise money because I can honestly say that every single doctor, nurse, dietitian, surgeon, physiotherapist and cleaner treated me with such kindness, warmth and made me feel safe at a difficult time in my life. Everyone went above and beyond and I am so grateful to every single person who helped me.

“I also want to raise awareness about this devastating condition. Head and neck cancer is on the increase and there really is not a great deal of research into this area. There has been a 47% increase in head and neck cancer between 2013 and 2020 and whilst mortality is reducing in most other cancers, it’s increasing in head and neck.

“This type of cancer has only just had its first breakthrough in decades, but unfortunately that was too late to help me. The average life expectancy for my type of head and neck cancer is 12-18 months. Grim.

“So if you've got sore in your mouth and it doesn't go after a couple of weeks, go to the doctor. An early diagnosis is absolutely essential with this type of cancer, because it's so aggressive.

“That’s the same advice if you have a continuous sore throat - get it checked out. And the same with any lumps or soreness in your neck that you haven’t noticed before, please, just go and see your doctor. Don’t put it off.”