News | Feature

“Living with mouth cancer, every day is a bonus”

24 Jun 2022

Over 8,700 new mouth cancer cases are diagnosed in the UK every year. Too often, they are not detected early enough. Our patient Alan Gilbert generously shares his story to help people understand this life-threatening disease.

alan gilbert and his sister, susan

“The other day, I’d been carrying my fold-up bike down an escalator. Someone pushed past me and I ended up falling three or four steps backward.

“But I survived! Surely, nothing can happen to me without God’s permission.”

Alan Gilbert has been a patient at The London Clinic since 2018. His good-humoured optimism is much admired by the nurses and clinical teams caring for him.

He was diagnosed with tongue cancer in 2018. Despite having a glossectomy to remove the cancer, and a course of radiotherapy, the cancer returned in November 2019.

Alan was given just six months to live and was offered immunotherapy, he believed, “while on his deathbed.”

It’s now over two years since he received that crushing news.

“I’m not quite out of the woods, but I’ve much to be thankful for,” he says.

Against all odds, his body responded positively. The tumour shrunk in answer to the treatment.

While the cancer went on to mutate and regrow another time, Alan underwent a course of chemotherapy, which further improved his condition.

All subsequent scans have indicated that the cancer is dormant, and Alan attends fortnightly appointments to receive a dose of chemo-agent to keep it at bay.

“When you’re living with mouth cancer, every day’s a bonus,” Alan says. “I might not die of cancer, I might not die of Covid. I could get knocked down by a bus. Right now, I am living in the moment and I’m thankful to be here.”

alan eating lunch in the duchess of devonshire wing cafe

Each year in the UK, over 2,700 lives are lost to mouth cancer. Earlier detection can improve prognosis and there are a number of common symptoms to look out for.

These symptoms include ulcers or white or red patches in the mouth that don’t heal within several weeks; persistent lumps or swelling in the mouth, jaw or neck; teeth becoming loose; persistent numbness of the tongue and/or mouth; and changes in speech, such as a lisp.

In Alan’s case, a small cancerous ulcer was identified on his tongue during a routine trip to the dentist. Due to the position of this ulcer, Alan’s tongue needed to be partially removed.

This caused his mouth and throat to become disabled, his speech is distorted and eating is difficult, with a daily struggle to maintain his weight.

Meanwhile, chemotherapy came with side effects including podiatric problems and chemo rash.

“The point is that I’m no longer in pain,” he says. “In fact, I have taken no painkillers whatsoever for 18 months.”

Alan’s recovery has amazed and inspired his family and clinical teams alike. Christine O’Brien, Radiotherapy Team Leader at The London Clinic, was responsible for delivering Alan’s radiotherapy in 2020.

“It feels like a long time since I treated Mr Gilbert,” she says. “He’s come such a long way.”

The radiotherapy treatment took place each day Monday-Friday over seven weeks, with a rest on the weekend. For most patients, having radiotherapy is a gruelling experience, with many negative side effects. This is added to the fact that Alan had already had quite complicated surgery.

“Despite this, he was always so inspiring, with such determination. It’s an incredible achievement to get to the quality of life he’s enjoying now. He should be really proud of himself, as we all are,” Christine adds.

Dr Amen Sibtain, Alan’s consultant, is an expert in clinical oncology. He, too, has been impressed by Alan’s response to treatment.

“It has been an absolute pleasure to look after Alan, who has consistently been very motivated and positive. He has not let his illness affect his quality of life and he has taken ownership of the difficulties that it has thrown at him,” Dr Sibtain says.

Along with his sister and carer, Susan, Alan is keen to raise awareness for mouth cancer via the Swallows Head & Neck Cancer Support Group, for which they are the London ambassadors. Their aim is to help people better understand this potentially deadly disease and how people can support each other.

“Alan didn’t drink or smoke, which you often think might be the cause of mouth cancer,” says Susan.

“He’s always been so healthy, particularly with food and exercise, so the diagnosis came as a shock to all of us.

“It shows that anyone can find themselves in the grip of this awful disease, so we want to make people aware of the signs.”

“Alan’s achievements and accomplishments have been extraordinary,” continues Dr Sibtain. “His case is an example of how treatments can be very successful even when the probabilities are against us.

“He has been amazingly well-supported by his sister, Susan. Together, they have worked very hard with Swallows to help others dealing with this difficult disease.”

Now, Alan is keen to share that, even when faced with a statistically challenging prognosis, there is hope.

As well as resuming volunteering at his local foodbank and charity shop, and joining a fitness course for people with cancer recommended by his oncology nurse, Fiona, Alan has been able to keep up one of his greatest passions – cycling.

“Both physically and in terms of emotional support, the team at The London Clinic has helped me get back on my feet and back to doing what I love!” he says.

“The care I have received has been incredible. Their Executive Head Chef, Paul, held an ice cream cooking tutorial and there was also an art class, all in my hospital room.”

alan enjoying a cooking class with chef paul

Moving forward, Alan and Susan’s aspiration is for people to be cognisant of what others might be going through. Today, he enjoys activities that he could never have imagined doing when living with cancer.

“When people walk past you on the street, you never know what they might be struggling with,” says Susan.

Having completed a cycling trip in Berlin in 2021, his next route will be the Parkland Walk around London.

“I had hoped retirement might be more relaxed and less demanding,” Alan says. “But life seems as crazy as ever and I’m never bored, even during lockdown.”