Below he tells of his multiple surgeries and how his fighting spirit has helped with his recovery.
In August 2019 I began to suffer with severe toothache, which became so bad I eventually went to the dentist. I hated going to the dentists and had not been for over 27 years.
As I was being examined the dentist noticed a dark mass as she removed a wobbly tooth. She said that she hadn't seen anything like it before and wanted to take an x-ray for a closer look. She also referred me to a specialist.
I waited five months before I received an appointment with the specialist. During this time, I became extremely anxious, but tried to convince myself that "no news is good news".
Finally, on 19th December 2019, I was referred to the Charles Clifford Dental Hospital in 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 17th January 2020, when I had two more teeth extracted and my jaw bone scraped.
After waiting for two weeks, I received a call from the hospital saying that 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 30th January 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.
The surgeon said there was a good chance or 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 has grown through the nerves and possibly wouldn't return. I just wanted the floor to open and swallow me. I'd thought of everything it could be, but never once imagined it could be a life-threatening disease.
I was healthy and strong and apart from a bit of toothache, there was nothing wrong with me. How could this be happening to me?
My surgeon thought the tumour had been growing for over 15 years undetected and was amazed that I hadn't felt it or had problems in my jaw before now. He said that a knock to my chin or biting into something hard could cause my jaw to break. I was unable to eat solid food before my surgery as my jaw had become so fragile.
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 it was the best option for removing all the tumour with a shorter recovery time.
I knew I had to do something to help me cope and understand what was happening to me. I found The Bone Cancer Research Trust (BCRT) who said they would support me through my diagnosis and surgery and suggested that I join the ameloblastoma Facebook group.
Knowing there are organisations like The 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 30th April 2020. The procedure involved fitting a distractor to pull two pieces of bone apart. Over the next few months, new bone develops 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 osteogenesis distraction failed. I spent 115 days in hospital during the first COVID-19 lockdown, was unable to eat or drink, or see any family and friends. I developed sepsis which nearly killed me and I had 12 surgeries in total.
On 1st July 2020 I made the decision to change my surgeon. 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 has failed, I was offered the fibula free flap surgery, where part of the bone in my lower leg (fibula) was removed and used to reconstruct my jaw. On 5th 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 first 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 still need more surgery with dental implants and some plastic surgery to straighten my face, but I'm fit and strong and much more equipped to deal with things now. I'm looking forward to seeing what comes next in my future consultations with my medical team, but I know its 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 persons. 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 that my tumour was growing for over 15 years, and now I'm paying the price.
I hope when people read my story they will realise they're not alone in dealing with their diagnosis. I'm determined to get out there as soon as I can and show people that we are going to beat this thing together.
I'm raise funds for the Bone Cancer Research Trust and have set up a Special Fund, called Darren Wilkinson's Ameloblastoma Warrior Fund, as a way of saying thank you. I hope my story and fight for survival will help others and raise awareness of this horrific and very rare disease.
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