I'd been to see my doctor week after week with mouth ulcers, I was repeatedly told I had an oral infection and that antibiotics would knock it out. I was finally referred to a specialist when the doctors admitted that they didn't know what it was. In hindsight, maybe they did. The appointment was set at the maxillofacial clinic, August 11th.
With a lamp strapped round his forehead, the specialist looked into my mouth.
"Do you smoke?"
He felt my neck and glands, my wife told me later that this was the point when he gave a serious look to the nurse behind the desk.
"Do you have pain in your ear?"
The fact he was asking the question told me he had diagnosed me, I had terrible pain in my ear, one doctor had diagnosed me with trigeminal neuralgia.
"It's not trigeminal neuralgia," he sounded disgusted with the misdiagnosis.
"Do you know what it is?"
He nodded his head and closed his eyes.
"Can you tell me what it is?" I asked the question but I knew the answer, the look on his face had told me everything, the one word that cripples.
"I'm almost certain you have cancer," it wasn't that but the cry of my wife that hurt more. She rushed towards me and put her arm around my shoulder as I asked questions, monotone.
"Is it aggressive?"
"It is aggressive."
"Could this be terminal?"
"This is why you should go to hospital now to have it scanned."
He went on to tell us that he had worked in a ward in Fazakerley for years, he would phone ahead.
We stopped off at our house on the way to hospital, my wife, Vik, went to ASDA, she said I needed new pyjamas, I stayed at home to pack: I put a Harry Potter book and a teddy bear in a bag, I was 32. I wanted my Mum and Dad. I remembered the time I went to a village fete and asked my mum if she could fix the tombola so I could win.
We told family and friends on the way up to the hospital, I had an awful feeling of guilt. I had ruined summer.
In the hospital, I was examined more and the diagnosis was confirmed, we spoke to another specialist, who had a model skull on her desk, I stared at it as we spoke, it felt like a piece of memento mori.
Over the next few days I had an MRI and CT scan. The results were relayed to me: I had an 'extensive tumour', I had no idea of its significance at the time but the tumour was classed as a type 4. Vik had studied biology and, unfortunately, knew exactly what that meant. If it was any bigger then they couldn't offer any treatment. If it was ten years earlier then they wouldn't be able to attempt a cure. Even as recently as a year and a half before, they didn't have the technology to overlay a CT with an MRI scan.
There were options: surgery and chemo/ radiotherapy or just chemo/ radiotherapy. Surgery would mean a 'significant change in quality of life', they always had carefully selected phrases. This surgery option would mean removing most of my tongue, epiglottis and lymph nodes. I would be left with a tracheotomy and effectively no voice. The meeting of specialists was on a Wednesday morning. They discussed all cancer cases on the ward and the best options. My wife and I sat on the hospital bed, waiting for the click of high heels of the surgeon to reveal the result of the meeting. The decision was unanimous, I was to receive radio and chemotherapy only. The odds for each option were the same but this option would have the better quality of life at the end. I had a meeting with the oncologist in an hour to discuss treatment. We were so relieved to hear that the aim for the treatment was a cure. For the first time in a week, we smiled, it would all be fine.
After a short taxi ride and wait, we walked into an office full of specialists and a wonderful nurse, Sally. I was told there were 4 options:
1) do nothing
4) radiotherapy and chemotherapy
We were still smiling and failed to pick up on the serious approach of the man telling us this. During his explanation, he said that the choice of chemotherapy alone would have a success rate of 5%. Well, I thought, the option of both treatments is bound to be much higher so I asked for the success rate of chemo/ radio.
"You'd like to know your odds?"
"Yes," I answered immediately, expecting a high number, I don't know why.
"35%," it hit me like a brick wall.
"That's not very high," I managed to say.
"No, it's not very high," he agreed solemnly.
The oncologist would spend hours studying the MRI scans and put together a course of radiotherapy, it was important that the doses weren't too high and accurate, there was a risk of paralysis if a mistake was made. To ensure accuracy, a mask of my face was made, this would be bolted onto a table to keep me perfectly still during radiotherapy, after having this made, it was tried out, I couldn't move a millimetre.
As a result of treatment, there would be significant swelling, doctors foresaw me being unable to swallow at some point. I therefore had a feeding tube inserted. This was a plastic tube that stuck out of my chest, it meant that liquid food could be inserted directly into my stomach.
There were complications, the tube was rubbing against an artery. On around 10 occasions this meant severe bleeding. A few of these times, I was blue lighted in an ambulance as blood poured out of my stomach and I threw up around a litre, meaning I was bleeding internally as well. I remember one time, watching my blood pressure drop to around to 50 over 30. I was later told that this meant I was 'critical'. I was critical twice. The point at which my wife became worried was when I stopped panicking and became very calm, serene and, oddly, happy. I was singing and hallucinating. I remember not caring about what was happening to me. This might sound odd or even unbelievable: I hardly believe it myself as I write it, but it happened.
Treatment began. Things were looking up. I was glad to have the chemo flowing through my veins but the bleeding returned. This was serious. The decision had to be made: the only way to stop this bleeding was through an operation but operating on someone on chemo is not something surgeons like to do. I had a powerful drug in my body that prohibited cell growth, the very thing I'd be depending on to recover from an operation. If I didn't have the operation then I could receive no treatment. The decision was made to operate.
There was an argument between my oncologist and the head of gastro, my oncologist wanted radiotherapy to continue immediately, the head of gastro warned that this could result in... well, it wouldn't be good news. He suggested a week's wait but a week's wait would reduce my odds by 20%. As there was a disagreement, I was given the choice. I decided to have the radiotherapy immediately. Fortunately, I felt no pain in my stomach for the next week; I had dodged another bullet.
Treatment continued, I lost a lot of weight and slept, and slept, and slept. My Dad drove all the way from Norfolk to Liverpool to see me often, I remember trying my hardest to stay awake for him but couldn't manage it, I fell asleep for most visitors, often holding their hand.
I need to mention that my wife was the strongest, most supportive, wonderful woman throughout. There were plenty of occasions where I needed someone to fight for me and she did that fiercely. She was, and still is, my Patronus: slaying a horrible enemy. I owe her my life. She dragged me through so much of this.
The staff that helped me along the way: the nurses, doctors, radiologists, oncologists, surgeons, psychiatric nurses, dieticians, paramedics and chemo nurses were ultimately professional, caring and went above and beyond their job spec. I'm humbled and grateful. I'm just in awe of some of the amazing staff we have working for the NHS.
I continue to have monthly check ups, I'm still waiting to hear those magical two words and I know I will spend the rest of my life with my head looking over one shoulder, scared I'll be attacked again.
I was busy feeling sorry for myself at one point a month ago when I heard the news that a friend of mine from school had just lost his battle with cancer. At his funeral, his uncle gave the eulogy where he said the following words that I still can't repeat because it chokes me with tears, 'He died with a sword in his hand and love in his heart.'
Cancer doesn't care who it strikes, it's an evil, powerful enemy and it turns me into a scared little boy. Before I became too weak, I drew cartoons in hospital, this makes sense to me: a stupid comic raising money to fight cancer.