I have always looked after my mouth, going to the dentist for regular check-ups and eating 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, and my taste was the same – so what was this?
I immediately rang the doctor. They say you should 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, so I went home and started with the antibiotics. But there was always a thought in the back of my mind that something just wasn’t right. I checked my mouth every day, and 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 that maybe he was right; maybe I needed to give the antibiotics more time. But again, days passed and there was still no change in my lump.
I booked 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 finished the antibiotics, I returned to the doctor’s surgery and requested to see the same nurse. She looked in my mouth and could see that there was no change. I had photographic evidence which I had taken 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 that he was “sorry it’s taken seven times for you to visit, but you are 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 on 25th 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 or speak, and could only just manage drinking water. I returned home the same day ,and the waiting game began.
Waiting for the letter through the door or for the phone to ring, I knew in my heart something wasn’t right. I had a 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 sitting there looking at the consultant speaking to me, but in my head all I kept saying was “Cancer? What about my son?”
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 and photographs, and met with a speech therapist and dietician. I didn’t even get a chance to breathe – I felt so suffocated by it all, as there was so much information to take in.
I was only 23; I should have been hearing about my son’s day at nursery, not cancer.
My consultant explained my cancer. Depending on scan results it was treatable, but 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 my mind. I was constantly reminded about cancer, whether it was on the television or in the shops; there was always something bringing my mind back to cancer.
I had an MRI scan, CT scan, PET scan, and more blood tests. More 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 of being put into the coma, that I couldn’t sleep. I tried to enjoy myself, but 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 which I was over the moon about. However, 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 be safe they were going to perform a tonsillectomy as well.
9.30am came and I made my down to the theatre. It was the longest walk of my life. I said my goodbyes and I was put to sleep. I woke up eight hours later, but it only felt like 10 minutes to me.
I remember waking up and checking my arm; to my relief they hadn’t had to do the original operation planned as the cancer was small. I had laser surgery to mouth, a left partial glossectomy, a tonsillectomy, tooth exaction, and a neck dissection. I woke up looking like something out of NASA – I had neck drains, catheter, cannulas, and a feed tube.
It was so hard seeing my neck scar and my crooked smile for the first time, but I was so, so relieved that I didn’t have the first operation.
I recovered well and spent five days in hospital. It 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, as I had yet another waiting game to see if I needed radiotherapy.
On 17th December I received the phone call, and was told my surgery was a success and I didn’t need radiotherapy. I literally fell to the floor, I was so happy.
On the 20th December I was put into remission, and told that the cancer was caught very early and the lymph nodes in my neck were clear – that was the best Christmas present I could have asked for!
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 that early diagnosis is key! Check your mouth, and if you notice anything abnormal get it checked out, and make sure to visit the dentist .
Age is just a number; I’m 23, a non-smoker, and I don’t drink, yet I still got the mouth cancer.
It only takes 45 seconds to check your mouth, so do it – it could save your life!