Mouth Cancer Action Month

I have always looked after mouth, always gone to the dentist for regular check-ups and eat a normal diet.

Wednesday 27th September 2017 was just a normal morning, I was eating my cereal and I bit down on what I thought was my tongue, but when I went and checked in the mirror I noticed the lump under my tongue. I hadn’t had any pain; my mouth didn’t feel any different, my taste was the same, so what was this?

I immediately rang the doctors, it’s true what they say, ALWAYS get a lump checked out so that’s just what I did. I visited my surgery and saw the Ear, Nose and Throat specialist who looked in my mouth briefly and said… “it’s a mouth infection”.

I was given antibiotics and a mouthwash to take for seven days, I went home and started with the antibiotics. But there was always something in the back of my mind that something just wasn’t right. I checked my mouth every day, after three days of taking the antibiotics and using the mouthwash nothing appeared to be changing.

I booked a further doctor’s appointment and saw a different doctor. This doctor didn’t even look in my mouth and told me to give the antibiotics chance to work. I questioned the doctor and asked, “could it be mouth cancer?”

I had done research and was showing some symptoms. The doctor laughed at me and said, “you’re 23, you CAN’T get mouth cancer.”

After that appointment I thought to myself, maybe he’s right, maybe I need to give the antibiotics more time. But again, days went passed and there was still no change in my lump.

I booked a yet another appointment, with a nurse this time, she looked in my mouth and could see the lump, but because I hadn’t seen her on my previous appointment she couldn’t see that there wasn’t any change, so again I was sent home to “give the antibiotics a chance”.

Finally, after I had finished the course of antibiotics, I returned to the doctor surgery and requested to see the same nurse. She looked in my mouth and could see that there was no change. I had photo evidence, which I took every day, this was so important in my case as I had to prove to the doctors that there was no change and the antibiotics hadn’t worked.

The nurse called a doctor, who also looked in my mouth, he said: “I’m sorry it’s taken seven times for you to visit, but you going to have to be referred for a biopsy”. They sent the referral as fast track and within a week I was sent to the Musgrove Hospital in Taunton for a biopsy (25 October 2017).

I had the biopsy, where they took two areas of tissue for testing. It was originally meant to be one, but the nurse said a part of the lump looked abnormal and asked if she could take a further biopsy to which I obviously agreed.

I had seven stitches to the side of my mouth, the pain was so intense I couldn’t eat, speak and could only just manage some water. I returned home the same day and the waiting game began.

Waiting for the letter through the door or the phone call I knew in my heart something wasn’t right, I always had that gut feeling and they say you know your own body. The letter arrived on the 8th November, I was called back to Musgrove and myself and my family went into the room where I was diagnosed with Squamous Cell Carcinoma (SCC) of the tongue.

I had no words, I was sat there looking at the consultant speaking to me, but in my head all I kept saying was “me, cancer, what about my son”.

Well it very much was real, my family sat, distraught, not knowing the outcome of what was going to happen to me, it was a day I will never forget.

I was sent for a further biopsy on my neck, as I had a lump, and fortunately the biopsy came back clear.

I was then sent for bloods, photographs and met with a speech therapist and dietician. I didn’t even get chance to breath, I felt so suffocated by it all, so much information to take in.

I was only 23, I should be hearing about my son’s day at nursery, not cancer.

My consultant explained my cancer. Depending on scan results it was treatable but it’s a major operation, they planned to remove the left side of my tongue and perform a radical skin graft from my arm onto my tongue and then from my leg onto my arm.

I didn’t really consider how severe the operation was going to be, I was just willing to do anything to be around for my son.

I returned home and tried to act “normal”, whatever normal is, but it was always in the back of mind, constantly reminded by cancer on the television or in the shops, there was always something bringing me back to cancer.

I had MRI scan, CT scan, PET scan and more blood tests and importantly I made sure I enjoyed every day with my son and family.

I had a pre-op assessment in Exeter, where I underwent more tests to make sure I was fit for the operation which was planned to be a 14-hour op where I would be put into an induced coma until the next day. I was declared fit for the operation and was given the date -- 30th November at 7.30am.

I was so petrified of the outcome and being put into the coma that I couldn’t sleep. I tried to enjoy myself, but like I said, the cancer was always there, and I was never my true self.

Soon enough the 30th November came, and I made my way to Exeter hospital, I met with my surgeon who brought some good news, the PET scan showed the cancer was smaller than they thought and they might not have to do the operation as previously planned, but instead do a laser surgery to the tongue to which I was over the moon about.

But, I wouldn’t know what procedure they had done until I woke up, I was also told my tonsils had flashed up as a hot spot on the PET scan so to be safe they are going to perform a tonsillectomy as well.

9.30am came and I made my way  down to the theatre, the longest walk of my life. I said my goodbyes and I was put to sleep. I woke up eight hours later but felt like 10 minutes to me.

I remember waking up and checking my arm and to my relief they hadn’t had to do the original operation planned as the cancer was small. I had laser surgery to mouth, left partial glossectomy, tonsillectomy, tooth exaction and a neck dissection. I woke up looking like something out of NASA, I had neck drains, catheter, cannulas, feed tube.

It was so hard seeing my neck scar for the first time and my crooked smile, but to me I was so, so relieved I didn’t have the first operation.

I recovered well and spent five days in hospital, which was so hard being without my son for that long, but it had to be done. I returned home on the 5th December and nothing felt the same, I had yet another waiting game to see if I needed radiotherapy.

On 17th December I received phone call and was told my surgery was a success and I didn’t need radiotherapy.

I remember the phone call, I literally fell to the floor, I was so happy.

On the 20th December I was put into remission, I was told the cancer was caught very early and the lymph nodes in my neck was clear that was the best Christmas present! 

I have monthly reviews and so far, so good, I’m recovering well but I’m mentally scarred and seeing councillors for this.

The whole point of my story is EARLY DIAGNOSIS is key! Check your mouth, if you notice anything abnormal get it checked out, visit the dentist more.

Age is just a number, I’m 23 a non-smoker and don’t drink yet I still got the mouth cancer, it only takes 45 seconds to check your mouth, DO IT!!

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.