Dan (pictured above), known on the site as Defiantlydisfigured, was diagnosed with squamous cell carcinoma in the ethmoid sinus in 2012, which is a very rare type of cancer. He underwent surgery, radiotherapy and chemotherapy. Dan found support from sharing his story online in blog posts and on social media, and he continues to raise awareness for facial cancers.
I was 34 and told that I had a large tumour growing inside my head and it was not long before it would invade the space where apparently my brain was.
In order to make sure I had a chance to live, they would have to take out my eye to make sure they got it all. Well as shitty as it sounds, it was an easy decision: "whatever it takes,” I said.
The wheels moved swiftly after that and before I knew it, I was nervously twiddling my thumbs in my hospital night gown panicking about whether it ties from the front or the back, waiting for the Instruction to go to theatre.
The call came, it was time. On my journey I caught a reflection of myself. It would be the last time I saw myself with 2 eyes.
The road map was presented to me in simple terms:
Surgery + recovery + radiotherapy + chemotherapy + recovery = life returns to normal.
WOW how I wish it worked out like that.
As the fog cleared and I felt the dressings, I felt a sense of achievement... The first step taken, but what did I look like? I staggered to the bathroom, I saw myself for the first time, it was done.
“As the fog cleared and I felt the dressings, I felt a sense of achievement... The first step taken, but what did I look like?”
However, reconstruction showed immediate signs of failure, as small area was weeping and went onto form a small hole. There was no time to wait, Radiotherapy was next on the menu, 6 weeks to heal as best I could and get that face mask made.
Radiotherapy began as a fascination, being led through doors and corridors to a room with contraptions straight from a science fiction movie. I was laid down on the slab and the face mask clamped down with a breathing tube inserted into my mouth, definitely not a nice place for the claustrophobic. Room cleared, the wizardry began and as quick as it started it was over. Painless, silent, only a slightly funny smell. This would be my ritual every weekday for the next 6 weeks, a piece of cake.
I later wrote about my experience of radiotherapy and described it as "the shittest way to lose weight."
As the days turned into weeks, the sleeping giant, Godzilla the radioactive monster was unleashed on me and inflicted horrendous burns, nausea and fatigue. The delicate skin on my face which was already scarred was now purple, and the thin tissues died exposing my eye orbit (if you could call it that as there was nothing there). Before my eyes (well, eye), my face fell apart.
No time to falter though, let's have some chemo now...
The following weeks and months after are a blur. I woke every morning to fall back to sleep, exhausted... I lost so much weight, I was so weak, but as the weeks passed I slowly recovered.
It took a long time to be able to not fear every check-up, knowing that every day was like borrowed time, and the fear I would get the news that cancer was still there, and all of this was for nothing. Thankfully that day never came, it worked.
I write this 9 years later, and I've not had one instance of re-occurrence.
I started to write my blog as my background story was as crazy as my surgery... Finding out I had cancer the same day I found out I would be a dad, and then my son being born on my birthday which is Christmas Day. I started to write to tell the story, but then I developed it into a road map of my journey, one which many others like me would follow silently and lonely in their own journey with facial cancer. Reading my journey became their ray of hope when they couldn't face the world because of their altered face. Writing became my therapy and treatment.
“Reading my journey became their ray of hope when they couldn't face the world because of their altered face. Writing became my therapy and treatment.”
That wasn't the end of my treatments, the adventures had only just begun...
The next few years saw me go under the knife many times, I think I did the A to Z of flaps (skin and muscle transplants) in the vain attempts to repair and reconstruct my face, which eventually led me to the realisation that I am thankful for what I have, I hate hospitals and I've got my life to live.
No two cancers are the same, but many share similarities. Thank you for reading my short story of my treatments, I look forward to reading yours.
We’d like to thank Dan for sharing his story here on the Online Community. If you’re affected by sinus cancer or another type of facial cancer, you’re not alone. Why not reach out for support in the Head and neck cancer forum?
