Raising vital funds for research into primary bone cancer.

Darren's Story

Some have said I'm brave and courageous, but at the moment that's not the case. My fear comes from the unexpected and I can't do anything about that. I have a fantastic wife who is going to be tested in how to cope with the severe changes, but I wouldn't want to do this without her.

In August 2019 I was persuaded by my wife, Mel, to go for a routine dental new patient check-up following some tooth ache. I hadn’t been to the dentist for about 27 years but Mel insisted that I go and get checked out. The dentist did an X-ray and said she’d “never seen anything like it before”.

On the 19th December 2019 I was referred to Charles Clifford Hospital for a biopsy and two teeth extracted. Following this on the 16th Jan 2020 I had a review at Charles Clifford Hospital. It was discovered that the first biopsy did not get enough tissue for a full diagnosis, but it definitely wasn’t just a cyst. The very next day I had a second emergency biopsy, this resulted in having my tooth extracted and some removal of my jawbone.

On the 30th Jan 2020 I went to find out my diagnosis, it was then that I was told that I had Ameloblastoma.

On the 13th Feb 2020 I went back to hospital and saw Ian Varley and Mohamed Ali where it was arranged that I would await surgery on the 20th March which would involve the removal of my full lower jaw.

The surgeons have been amazing, they answered all our question and showed us a 3D model of jaw built from my CT scan.

Something I found to help me through this diagnosis was by joining an Ameloblastoma Facebook group. Of which then lead me to starting my own blog on Facebook called ‘Humour with a Tumour’. Knowing that there are groups like the Bone Cancer Research Trust and Ameloblastoma groups to confide in and share knowledge of this condition really takes the weight off your shoulders. I have contacted some people who have experienced what I am going through, their advice is priceless.

I am now being particularly careful to not break my jaw before surgery, as apparently this has been experienced by quite a few others.

I am unable to eat solid food at the moment as the tumour has made my jaw so fragile. And for weeks after the surgery I will have to be fed through a nasogastric tube and also have a tracheotomy to help me breathe. Some people have a bone graft from their fibula bone to replace the missing jaw, instead I am undergoing something called bone distraction osteogenesis. It is hoped this will encourage my jaw to grow back.

They will remove my jaw below the hinge joint and then insert what looks like Meccano to the bits of the jaw that is left. There will be two screws out of the back of my neck and we will have to turn them twice a day as the new bone grows.

My advice to others would be to talk to people and don’t be scared to face it the way you want to, not how you think everybody else would. It's your diagnosis not anybody else’s. Its personal to you and having a good support network around you is important. I'm raising funds for the Bone Cancer Research Trust as a way of raising awareness and helping me cope.

I feel after being diagnosed with a benign but aggressive tumour that there should be more support available to patients when visiting the dentist. I believe that dentists should incorporate a 12-monthly appointment with an X-ray for every patient, so that things like slow growing tumours could be discovered before they take over someone's life and be potentially life threatening.

I still have moments of anger and hurt at the cards that have been dealt and it is the unknown that particularly worries me. But me and my wife Mel are determined to take on the challenge head on and plan to continue with fund-raising events. We recently held the St Paddy's Day Purgatory 5km & 10km, which was a great success. We have lots of plans, including our very own mascot!

If I can reach out to one person through bringing my story to life, then I'll be certain I did all I could. If I can be as inspirational to others as they have been to me, then I'll be happy. I'm determined to get out there as soon as I can, to show people that we are going to beat this thing."






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