Finally on the 19th of December 2019 I was referred to Charles Clifford Dental Hospital, Sheffield for a biopsy and had two teeth extracted at the same time. Unfortunately, there was not enough tissue taken for the biopsy.

I had a second emergency biopsy under anaesthetic on the 17th of January 2020, when had two more teeth extracted and my jawbone scraped.

After waiting for two weeks, I received a call from the hospital saying I needed to come for a consultation regarding the results of the biopsy. I knew it wasn’t good and started to fear the worst. 

On the 30th of Jan 2020 I met with a surgeon and my fears were realised. I was told that I had a large bone tumour called ameloblastoma, a very rare, slow growing, non-cancerous (benign) tumour that can occasionally become aggressive and affect tissues surrounding the jaw area. That's why early diagnosis is so important. 

The surgeon said there was a good chance of removing all the tumour in one go, but that the surgery would be aggressive, and I could lose full or part sensation in my chin as the tumour had grown through the nerves and possibly wouldn’t return.

My surgeon thought the tumour had been growing for over 15 years undetected and was amazed that I hadn’t felt it or had any problems before now. Two surgical options were given to me: distraction osteogenesis or fibula free flap reconstruction surgery. After discussing the pros and cons of both surgeries with my surgeon I decided on the osteogenesis distraction as I felt this was the best option for removing all the tumour and with a shorter recovery time.

I knew I had to do something to help me cope and understand what was going to happen to me. I found Bone Cancer Research Trust (BCRT) who said they would support me through my diagnosis and surgery and suggested I joined the BCRT ameloblastoma Facebook group. Knowing there are organisations like Bone Cancer Research Trust and other ameloblastoma groups to confide in and share knowledge of this condition really takes the weight off your shoulders. I spent days contacting people who have experienced what I was going through, and their advice was priceless.

I had my first surgery on the 30th of April 2020. The procedure involved fitting a distractor to pull two pieces of bone apart. Over the next few months new bone grows to fill the gap. I was left with two screws out of the back of my neck which were turned each day with a small screwdriver, enabling the new bone to grow. I was in surgery for over 8 hours, and the tumour was completely removed along with 90% of my jaw and all the teeth on my lower jaw, bar one.

Unfortunately, although the tumour was successfully removed, there were complications and the distraction osteogenesis failed. I spent 115 days in hospital throughout the first COVID -19 lockdown, was unable to eat or drink, or see any family or friends. I developed sepsis which nearly killed me and had 12 surgeries in total. 

On the 1st of July 2020 I made the decision to change my surgeon as I was frustrated with my recovery and the advice being given to me was not reassuring enough to keep me positive.

As the first procedure had failed, I was offered the fibula free flap surgery, where part of the bone in my lower leg (fibula) is removed and used to reconstruct my jaw. On the 5th of August 2020, I went back into surgery under the watchful eye of my new surgeon. Again, there were complications as my body was weak and not strong enough to deal with the things it had endured, but I am pleased to say the surgery was successful and after a few months of PEG feeding (where I was fed through a tube inserted directly into my stomach) I started to feel like my recovery was going in the right direction. With hindsight I’d have no hesitation in choosing the fibula free flap surgery as my 1st choice of surgery. The recovery has been a lot less traumatic, and it turns out that you can manage to walk on two bones instead of three! Who knew? 

I’m looking forward to seeing what comes next in my future consultations with my medical team, but I know it’s not going to be a quick fix.

Not having teeth has bothered me at times, but when I think how close I was to not being here it’s nothing. My diagnosis and surgeries have changed my life forever but I’m still here and fighting for all I’m worth.

My advice to others would be to talk to people and don’t be scared to ask as many questions as you need to. This is about how you want to deal with it, and not how you think everybody else would.

We are all different and your journey will never be the same as another person’s. It’s personal to you and having a good support network around you is important.

I hope my story inspires people to speak up and go and get themselves checked out at the dentist. It may feel like nothing in your mouth, but don’t take the risk. I had no clue my tumour was growing for over 15 years and now I’m paying the price.