Victor’s story – My battle with mouth cancer

  • Victor Middleton (70), from Brighton, was diagnosed with mouth cancer on 23 December 2014
  • Traditionally linked to smoking and excessive alcohol use, Victor was shocked to discover that the Human Papilloma Virus (HPV), transmitted through oral sex, is also a major cause of mouth cancer. Victor presented with all three risk factors.
  • HPV affects up to 80% of the adult population and is expected to overtake smoking as the leading cause of mouth cancer in the coming years.
  • Victor is now using his experience to raise awareness of one of the few cancers that is seeing an alarming increase in cases.

Victor Middleton has the prodigious honour of being one of Brighton’s oldest post war babies, born VE day 1945 amongst jubilant celebrations. A Brightonian through and through, Victor’s battle with cancer started with a simple car trip over the South Downs on a sunny weekend morning. Ahead of Mouth Cancer Action Month in November and to help raise awareness of mouth cancer, Victor had decided to share the journey he took in his fight against mouth cancer. Here, in his own words, is Victor’s story.

Through my story I want to share with you one simple message, mouth cancer can affect anyone. Although largely having a public perception of being caused by smoking and drinking, it is also linked to the human papillomavirus or HPV which is a sexually transmitted virus that can be transmitted through oral sex.. HPV is a virus which is so common within sexually active people that 50 to 80 % will contract it in their lifetime.  It is a virus which will lay dormant in most people, but one which can kill indiscriminately.

VictorI want to start by telling you that I am a fit man, I go to spinning classes five times a week and keep myself active whenever I can. One day on a car journey up and down the South Downs I was aware of pain in the back of my mouth which occurred with altitude changes. I knew something was wrong.

Later that day, I was helping my son to pressure wash his drains and jokingly said to him, as all the dirty water flew around, if I got an infection it would be his fault.  Little did I know what was in store for me over the coming months.

A few weeks later, in December, I awoke with a sore throat and swollen glands so visited the doctor expecting the regular course of antibiotics. After his examination I was immediately referred to the Ear, Nose and Throat department at the Royal Sussex County Hospital with an appointment a few days later, I knew something was seriously wrong.

I remember reading at the time the story of a young woman who had recently lost her battle with tongue cancer, it struck a chord with me and I went to the specialist with more fear than I could imagine. Losing my tongue was my worst fear, I love to talk and suddenly it dawned upon me that so many things we all may take for granted could potentially be taken away from me with what was to come.

The specialist confirmed my doctor’s fears a couple of days before Christmas; he found a lump at the base of my tongue. I asked if it was cancer, he said it was. I asked if it was life threatening, he said it was unless I received treatment. It’s amazing what effect one word can have on you, as soon as the ‘C’ word was mentioned my world melted, nothing had prepared me for that and in an instance my life had become a battle to survive.

One thing which I discovered along the way was that very little was known about the specifics of HPV. By chance one day I saw Factor 16 on my medical notes I asked my doctor if the virus was sexually transmitted and had it caused my cancer. He told me it was more to do with smoking and drinking but little was known on the link to the HPV virus. Much of the knowledge which I collected about HPV was through my own research and I knew this was a likely contributory cause. At this point I knew that people needed to know more to enable them to be more forthcoming when it came to HPV and its relationship with mouth cancer.

I went into my treatment soon after with many things in my mind, the most important goal which I set myself was that I had to stay alive to see my son reach 60. The primary cancer was confirmed as in my right tonsil, something which I had had problems with throughout my life, and soon after I had a tonsillectomy.

The treatment was long and hard, but what did I expect.  My doctor had warned me that nobody with cancer gets a ‘free ride’ and he was very right. I agreed to follow a proposed course of chemotherapy and radiotherapy and a few days later we began.

My treatment consisted of six doses of chemotherapy, which I received every Monday morning, in tandem with thirty doses of radiotherapy, five doses a week for six weeks.

The worse part of the treatment was radiotherapy, for which I had to wear a plastic face mask which fitted tightly over my head and fixed me to the bed of the radiotherapy machine to ensure the dose of radiation was accurate to 1mm. On one occasion I forgot to prepare myself for the mask and found myself gasping for air inside the machine, thankfully the nurse could see my panic and it was soon sorted, but this was another reminder that I could not take this journey lightly.

As I was sat in the oncology room with a needle in my arm receiving my chemo, I took inspiration from the people I saw around me, especially the breast cancer survivors. I thought to myself that if they could beat cancer then so could I, that thought gave me real strength.

I carried on with my normal life as per doctor’s orders, even continuing my spinning classes for two weeks. The sickness from the chemo then meant I was unable to use the gym.  I was offered steroids but refused due to adverse side effects and my appetite disappeared. I lived on liquid supplements for eight weeks.

During this time I lost 12 kilograms and had to use artificial saliva spray to compensate for the dry mouth caused by the loss of my lower salivary glands. My taste buds were also partially destroyed meaning I derived no pleasure from food as it had very little taste and it was often painful to eat at all.

After intervention from my oncologist to stop the rapid decline in weight, I was soon on the road to recovery and started to eat solid food and to drink the required amount for my recovery.

Eight weeks after my treatment had ended I was seen by my oncology team who told me I was recovering at a very healthy rate.  Appointments were made for an MRI scan to assess the results of the treatment and I soon found myself in the hospital again waiting for what could be the most defining point of my life.

After the consultant inspected the base of my tongue I was pronounced cured.  My relief was palpable.  For seven months my world has been a continuing daily battle against cancer and with just a few words that was all ended, little did I know that there were still major battles to be faced, not least with myself.

Within 24 hours I was overcome with feelings of depression and anxiety.  Who would have thought that winning my fight with cancer which consumed me for such a long time would leave me feeling without purpose.

I decided to give myself a new drive and from that moment I have used my experience to increase awareness of HPV and its relationship with mouth cancer.

Surviving mouth cancer has given me a new outlook on life.  I am able to look back on my experience as an positive  phenomenon – one which I have learnt from and can use to educate people about a mouth cancer and its causes,  which can include HPV,  of  which awareness remains frighteningly  low.

When I talk to my friends or family about my cancer there is a very consistent pattern, which I believe is repeated regularly across the country, a need to explain it to them.

The questions; what is mouth cancer, how is it caused, what is HPV, do I have HPV, how is it transmitted, did you give me it, can I be vaccinated against it? An ex-girlfriend even asked me if I could have given it to her, I responded with the truth; yes you probably have it, I may have given it to you but you may have given it to me, there is no way of knowing. Even kissing carries a potential risk of spreading the virus.

All of these questions have one common theme; there is a lack of common knowledge about a subject which in fact everyone should have in order for changes to be made and lives to be saved.

The biggest change that needs to happen relates to the current HPV vaccination programme.  As things stand, the vaccination is only given to young girls aged 12 and 13 for protection against cervical cancer but this must be extended to boys too, before they become sexually active.  A gender-neutral vaccination programme is the only chance we have of fighting mouth cancer by eliminating HPV.  My oncologist has even got his two sons privately vaccinated as a result of his own concerns.

A drive across the South Downs may have saved my life, but I am one of the lucky ones, I survived but every year thousands of people don’t.  We need to take the luck factor out of it and I want everyone to use my story to change the course of mouth cancer in the future.

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