Personal Stories

John’s Story

Hi, my name is John, and it’s now eleven years since I was first diagnosed as a ‘head and neck’ cancer patient.

I don’t know why, I never thought this would happen to me. In 2009 I was 54 years old, self-employed, a non-smoker, occasional drinker, and married with three children. I had never been ill before and thought I was ‘invincible’….so I thought!

It all started with what I would describe as a dry throat. I wasn’t too concerned about it initially and thought it was maybe a Summer cold. Then overnight a large ‘lump’ appeared on the side of my neck; I didn’t like the look of this and went immediately to my GP. I was eventually sent to an Ear, Nose and Throat (ENT) hospital.  At the time I had no idea of the seriousness of all of this.

The following day the hospital consultant told that the ‘lump’ on my neck and a tumour on my tongue were ‘linked’. The prognosis was not good. The plan proposed was chemotherapy to reduce the neck (lump) lymph swelling, radiotherapy to the lower tongue followed by a neck lymphectomy.  Following the cancer treatments I had neck surgery.

In my mind there weren’t options and I had complete confidence in my medical team based in a cancer ‘centre of excellence’ hospital.

One of my coping strategies during this time was counting down treatments; a quarter, a half, three quarters etc. until completion and finally the day arrived.

Recovery was slow, my body was physically exhausted from the intensive cancer treatments, surgery and probably anxiety; fatigue set in. With the help of the hospital speech therapist I learned to swallow again and get back to eating and drinking orally.

In an effort to help relieve the fatigue I slowly started exercising. This was difficult in the beginning as I was so unfit. Finally I started to build up strength and started running which I find is not only great for physical fitness but also for mental wellbeing.

It is a real shock and scary when the word cancer is first mentioned. But I am so grateful now to be back on my bike; to be back at work. I realise that I am one of the lucky ones. I now know I am not invincible.  I am fairly certain that it was because my cancer was detected early that I am here today. That is why it is so important to consult promptly with your doctor if you suspect any ‘lump’ on your neck or dentist if you notice anything different within your mouth.

Thanks so much to all the hospital medical teams at St. James’s Hospital, St. Luke’s and the Dental Hospital in Dublin. I am also indebted to ARC Cancer support and the Irish Cancer Society for their support. I am now a peer supporter in the ‘Survivor supporting Survivors’ programme with the Irish Cancer Society. I am a member of Mouth Head and Neck Cancer Awareness Ireland (MHNCAI), I want to do all I can to raise awareness of Mouth Cancer.

Lia’s Story

My story began with a rogue wisdom tooth that made me bite my cheek, especially in my sleep. The cheek got sore and inflamed. I put up with this for a while, as you do, then I went to a dentist, who removed the tooth. Good riddance, I thought.

Before long the sore area in my cheek was back and growing. I saw two dentists, over a period of about 8 months, while the sore grew and spread. I thought it was a mouth ulcer gone mad. One of the dentists thought I was chewing my cheek again. The second thought I had erosive lichen planus, a stubborn condition that’s notoriously hard to treat. He tried to treat it (steroid tablets, antibiotics, replacing mercury fillings), but no joy. In the end, I went to my GP, who referred me to the Maxillo-Facial clinic at Saint James’s Hospital in Dublin. By that time I couldn’t stretch my mouth to a full yawn, I couldn’t eat on that side, the pain in my cheek kept me awake at night and I had a hard lump under the angle of my jaw. They did a biopsy. A week later, I went back to get the results and was admitted.

My diagnosis was that I had a squamous cell carcinoma in my right cheek. Further tests would show that it was in my gums as well, and had spread to several lymph nodes in my neck. The treatment was radical surgery, followed by aggressive radiotherapy.

In surgery, they removed part of my jaw and my cheekbone and the lining of my cheek. They replaced them with bone, skin and fat cells taken from my leg. A radical neck dissection removed the lymph nodes, nerve and muscle from the right side of my neck. Then they stitched and stapled me back together and sent me back to the ward via the Intensive Care Unit.

I had a tracheostomy. I breathed through one tube, was fed through another. I had to learn to walk again. Not well enough, as it happened – the leg fractured later and I had to be readmitted, to have it re-set. I was in plaster and on crutches for months, which made the rest of my treatment hard to coordinate, but as a friend of mine said, that may have been a bonus because I literally had to sit still and rest, which I needed to do. Otherwise, I’d have been running around trying to pretend there was nothing wrong with me at all.

I had various complications: issues with medication, pain, infections, two re-admissions, blood transfusions ... but in the end, I muddled through to the slow process of recovery and adapting to the new me.

It’s tempting to gloss over all of this, but it’s important not to, because it shows that even if you have a late diagnosis like mine, even if the treatment plan seems unimaginably extreme when you hear it first, people get through it every day, and there is life beyond it.

The challenges and issues you might have to face beyond treatment are the great unknown. No one can tell you what it’ll be like because no two people have the same experience. Some people face enormous difficulties, while others sail through it with no trouble at all. Most of us have some residual issues we learn to cope with. For me, it was definitely worth it, although there were times, going through it, when I wondered if it would be. But time was what I needed, and time was what I got. Seven years, now, and counting. 

The most important things I’d say to someone who’s facing into treatment, are:

1.     Sometimes the treatment can seem to do more harm than the disease had time to do. Don’t ever forget how aggressive and destructive it would have been, if left unchecked.

2.     Don’t panic. It doesn’t happen all at once. Take every single thing that comes along one step at a time, and break each step into manageable bits.

3.     Statistics don’t mean anything when it comes to your individual case. They don’t know you, or anything about your personal history, how healthy you are, what your diet is, what genetic factors are at play, what other stresses or motivators you’re exposed to. Statistics don’t know a single thing about luck.

4.     I could say don’t go on the internet, but you will. Be careful of what sites you visit, and be aware that you don’t have all the information you need to process the statistics that you find. Some reasonable sites are listed in the reference section of this handbook.

5.     Don’t drive yourself mad wondering how you got this disease, or how different things might be if you’d caught it sooner. You can’t change it now, and you’ll need every scrap of energy for what’s ahead.

6.     Every small thing that you can do for yourself helps. Initially, I could only manage to open my mouth wide enough for three tongue-depressors, but I kept at it and slowly, one stick at a time, it improved. It’s still not great, but every little helps, and it was a thing I could do. I hated being helpless.

What surprised you?

I felt as though I’d been sleepwalking through my life until the diagnosis shocked me awake to the blunt truth that it ends, whether we’re ready or not. I was more than surprised by how hard it was to face that – it’s not exactly news.  But it’s different when it’s real.

I was taken aback to discover that my own response to everything that happened was fundamentally practical and optimistic – I’d fancied myself as a card-carrying pessimist and cynic, before.

And I was blown away by the loving, generous response of my family and friends.

Here’s another thing:  I used to have a pathological fear of two things: dentists and flying. We’re talking full-on panic attacks, here. The fear of dentists had to go, out of necessity and due to constant, extreme exposure to the cheerful efficiencies and great staff of the Dublin Dental Hospital. But when treatment was over and it was time to get on a plane again, I was astonished to discover that I’d lost my fear of flying.

How are you now?

Mostly well. I have less energy than I did. I’m less able to concentrate. I have issues with pain, deafness and tinnitus on that side, Frey’s syndrome, restricted mouth opening and tongue mobility, and related problems with speech and eating, although I can usually manage (I like to think) so that other people don’t notice. I will admit, because it’s not fair not to, that living with facial disfigurement has its challenges, especially during these Covid times when so much is done by video-link of one kind or another. Some days need courage. But the most significant, astonishing, gratitude-inspiring thing about my experience of mouth cancer is that I am still here, fourteen years later. No one could have predicted that, back when it started. And every single day, I’m grateful for the extraordinary people I have encountered along the way – medical and dental personnel, friends I have made in waiting rooms, online and at meetings, patients and survivors, and all the people who’ve worked on – and continue to work on – mouth cancer awareness campaigns.

Tony’s Story

My name is Tony Buckley and I hope that this brief account of my experience will help those who are worried about mouth cancer so that they will understand that taking action early can result in a positive outcome.

In September 2014 during a routine dental visit, my dentist noticed a white patch in my mouth. I was not aware of any change in my mouth and as I had neither drank nor smoked throughout my life, I always thought my mouth was healthy. My dentist suggested I see a consultant and gave me a letter of referral to Dr Michael Freedman, a specialist oral surgeon based in the Blackrock Clinic. I attended Dr Freedman who examined my mouth, he took samples from the inside of my jaw and my gum and asked me to return the following week for the results. He suggested I bring someone with me on my return visit, which concerned me as I felt then it could be something serious.

On my return turn visit to the Blackrock Clinic, it was confirmed that I had cancer in my right jaw and lower right gum. Arrangements were made of me to visit Professor Leo Stassen in the Dublin Dental University Hospital in Lincoln Place. Professor Stassen was very helpful; he explained everything to me in detail, in layman’s language. He said that he would operate on my mouth in St. James’s Hospital and he seemed confident that the operation could be a success, which was reassuring.

There were two steps involved in the operation, the removal of seven teeth and the removal of a section of my gum together with a portion of my inner jaw.  The jaw was then repaired using a skin graft. Following the operation, I spent four days in intensive care and a number of weeks in St James’s Hospital.

I left hospital in April 2015 and thankfully, I didn’t need any chemotherapy or radiotherapy. Professor Stassen said he would monitor me for a period of five years. The five years ended in April 2020. I have been in great form since and celebrated my 80th birthday in June.

I am very grateful to all those who cared for me so well during that stressful time- my consultant, doctors, dieticians, physiotherapists and in particular the nurses who couldn’t have looked after me better. Had my dentist not been so quick to spot the changes in my mouth, it may have been another 12 months before my next dental visit, and that may have been 12 months too late. I thank God that I am alive and healthy today.