The HOPON clinical trial: a patient’s view

In the final post in our series about the HOPON clinical trial, we hear from a patient who recently took part in the research, Mr Gerard Dean.

Gerard takes us through his cancer journey, why he decided to join the HOPON trial and what his experience of being involved was like.

Gerard

I had a feeling something serious was wrong even before my throat cancer was diagnosed and I remember feeling extremely tired all the time.

But it still came as a shock when the doctor gave me the bad news and confirmed it was throat cancer. My first thought was how sorry I felt for my wife, who was standing next to me. She’d already lost her dad and three of her brothers, who were all quite young, to this terrible disease. I worried how she’d cope if it took me too.

I went for my first surgery around 10 days later, and the surgeon thought he’d got it all. But when I returned a couple of weeks later the surgeon took me back to the theatre to have another check. After I woke up from my second operation I thought everything was fine, so I dressed and was on my way home, when a doctor stopped me in the corridor.

He asked: “Are you Gerard?” and I told him I was, feeling cold fear set in. He told me they’d found a big mass in my throat on the base of my tongue. The doctors said I’d needed specialist laser surgery.

So I went back into the operating theatre again. It was worse this time round because I had a tracheostomy which meant fitting a tube in my neck to help me breathe after the tumour had been removed. It was painful and meant I couldn’t talk, which was very annoying. I had to write everything down. But it only lasted a couple of days.

Good news

Overall I was in the recovery ward just over a week. As I was leaving to go home, one of the nurses gave me some advice. She said that the euphoria of a successful operation can be short lived, and it’s quite common to feel depressed after returning home. And this was exactly how I felt. It was very painful and I just stayed in bed. So my wife rang the GP who was a great help in dealing with the anxiety and depression that had set in.

I started radiotherapy almost as soon as I was discharged from my surgery. The radiographer said I’d need six weeks of radiotherapy, and then that was me, done.

Now, I’ve always been a big lad, and I started radiotherapy at a good weight. I was told that patients lose up to half a stone on radiotherapy, because it can damage your tongue and taste buds putting you off food. So I tried to look after myself – eating well, and sticking to the aftercare from the surgery (creams, tablets and mouthwashes). The radiotherapy flew by, it just made me tired.

After my treatment ended, I had to return every two months for a check up. It was an extremely worrying time: every time I saw the doctor I thought he was going to say “it’s come back”. But every two months soon became every three months, then six months, until finally after five years he said it was over.

On that final check up he said: “It’s good news, you’ve got the all clear, now go and enjoy your life.” I thanked him so much, I was so happy to hear those words.

Joining the HOPON trial

What are clinical trials? Watch the animation

A couple of months ago, my dentist noticed a tooth was coming loose, and he referred me to a specialist dentist at Liverpool hospital because of my cancer treatment. That’s when the dentist mentioned the HOPON trial. He told me about the risk of osteoradionecrosis, which can happen following dental work if you’ve had radiotherapy to the jaw, and how the HOPON trial was finding out if there was a way to help stop it.

One of the research nurses talked me through the HOPON trial. He gave me all the information I needed and told me exactly what my involvement would be. The nurses were all very supportive. I wasn’t just left alone in the wilderness, I knew exactly what to expect.

I immediately agreed. It was four weeks of hyperbaric oxygen treatment in a chamber before my tooth was taken out and then for a couple of weeks afterwards. The chamber itself was comfortable and not at all frightening and the staff kept me company during the treatment. I didn’t even notice that the oxygen was at higher pressure.

I wanted to take part in the trial mainly because I wanted to give something back. After all the care I’ve had, if I can help in any way I’ll do so. And after my experience with HOPON, I would recommend clinical trials to anyone if they have the chance, without doubt or hesitation. I tell people to go for it. It’s something I strongly believe in.

I’m so glad I took part. I hope that hyperbaric oxygen becomes available to all cancer patients like me if the trial shows it works. I knew that Cancer Research UK funded the HOPON trial and so I still carry on supporting cancer charities too.

Getting support and staying positive

Every single check-up appointment I had was stressful. Even now there’s a small part of me that still worries. But you’ve just got to try and stay positive and not dwell on the past. I’m lucky my wife was by my side the whole time, keeping me going through the tough times.

As for the staff at Aintree Hospital, they all looked after me so well – the doctors, the nurses, the porters, everyone. People at the hospital could not have done more for me; the care I got was fabulous. They were always there to answer questions or give me an encouraging word if I looked down or worried.

The way my scars have healed is fantastic. The only problem I still have is no saliva, but with pastilles I manage.

People need to know how important it is to give money towards cancer research and support Stand Up To Cancer – cancer will take a baby, a King, or a poor person. It can hit anybody, and if it does hit you, your whole outlook on life changes. The things I used to worry about don’t bother me anymore. The silly little things don’t matter, because I’m here and I’m alive. Cancer has touched me, but I’ve beaten it.

I’ll live with cancer, but I won’t die from it. I’m not ready to go yet.

Gerard

Read more

• Here’s the doctor’s perspective on the trial
• Find out more about the research nurses’ role in the study
• Visit the clinical trials pages on our website to find out more about other trials we fund