Mouth Cancer Action Month

Amanda from Bolton was diagnosed with mouth cancer when she was just 34. Here, in her own words, is her powerful and heart-breaking story of her experience with being diagnosed and undergoing treatment and why she feels it is best to see your dentist if you are concerned about anything.

“In early 2008 I had an ulcer on my tongue, which didn't go with over the counter medication. I went to my doctor's several times, but they just prescribed me ulcer medication. I eventually saw a doctor in April/May who sent me for biopsy. 

“I'll never forget sitting on the bed showing the doctor my tongue, before she had even taken the biopsy she said when I come for the results to bring someone with me. In the back of my mind I knew what she meant. At this point I still hadn't told my husband as I didn't want to worry him.

“On May 20th, 2008 at 3pm I was due to go to the hospital for the results. I received a call in the morning to say they had had a cancellation and could I come in at 11am. 

“I took a friend with me because I still hadn't told my husband. We sat in the doctor’s office and he looked at me and said I'm sorry there is no easy way to say this 'you have Mouth Cancer'. Right there is where my whole world fell apart. All I could think was I'm never going to see my boys grew old, get married have children, I'm not going to grow old with my husband. My heart was broken. 

“He then proceeded to explain what the reason they brought my appointment forward was, so I could have the MRI and CAT scans and various other tests needed. My friend at this point rang my husband, Simon, to tell him. I just remember him coming running down the corridor and sweeping me up totally heart broken.

“The first thing we did when we got home from that appointment was throw our cigarettes in the bin. We then told our son which was just so difficult. Then my parents. I can't tell you how many tears we shed in this week’s up to the surgery.

"Move forward 3 weeks to my pre-op. I remember sitting in the ENT waiting room on a Tuesday at Royal Blackburn Hospital and I was called in to be weighed and I just lost it and broke down saying I shouldn't be here, I was 34 years old, every person in that room was over 60 with some horrific facial disfigurements due to the results of mouth and throat cancer. I was petrified this would be me.

“I then met my surgeon and the nurses, and they explained what would happen during the surgery. Four weeks from the date of being told I was in surgery expected to be in around 7-8 hours. They were to remove the cancerous part of my tongue and use flesh and a vein from my left wrist/arm to graph onto my tongue, and use flesh from my stomach to cover the hole in my wrist, also removed my lymph nodes from the right side of my neck.

“I was in surgery 11 hours, I spent two days in intensive care. And a further 3 days on the ward. Determined to go home I walked around that ward all day to show I was fit enough to go home. But until I could prove I could eat I wasn't going anywhere. I'll never forget the blue gel I had to eat so I could go home but I did it and was released with a huge bag of medication and bandages. Simon was taught how to clean my tracheotomy safely and change my dressings, the dressings on my wrist where stapled to my skin.

“I then had a 4 week wait to see if I needed chemo or radiotherapy.

“I was told to avoid sneezing which is a lot harder than you might think, I was healing well, until one day I sneezed and blew my partially healed tracheotomy wide open again, I was totally devastated. I was sick of eating puréed food I'd lost around 3 stone. I felt so down, and this was in under three weeks whilst waiting for the results.

“Finally, the day came to see if I needed treatment and, thankfully, I needed no further treatment. The relief we felt was unbelievable, I had to go to the hospital for the next 6 years and was finally signed off in 2014. Simon was over the moon at me being signed off but for me it didn't quite feel the same, those appointments gave me peace of mind, so I had very mixed emotions when I was discharged.

“After all I had been through all if this I learned that it’s actually best that you see a dentist, not a doctor, if you are concerned about anything.”

For more information about mouth cancer, including how to spot the disease early, how to reduce your risk and what to do if you notice any of the early warning signs, visit www.mouthcancer.org.