Clinical Ambassadors

MR MAHESH KUMAR FDS RCS (Eng), FRCS (Eng)

Mr Mahesh Kumar is an Oral and Maxillofacial Surgeon. Since completing his study in dentistry from Kings College in London in 1990, he has undertaken a number of courses and continued to develop his career in medicine to acquire practical skills and essential experience in ear, nose and throat surgery; accident and emergency medicine; and general surgery.

Mr Kumar currently works as a Consultant at the Hillingdon and North West London Hospitals. He is committed to raising awareness of mouth cancer.

DR PHILIP LEWIS

Dr Philip Lewis qualified in London in 1977. He has worked in general practice and as a clinical assistant in the hospital service. Philip takes a keen interest postgraduate education, development of the dental team and public awareness of dental issues. He is on the Editorial Advisory Board of both Private Dentistry and Aesthetic Dentistry Today magazines, has received awards for commitment to postgraduate education, belongs to the American Academy of Cosmetic Dentistry and the British Dental Bleaching Society and is a former board director of The British Academy of Cosmetic Dentistry.

In addition, Philip is a long-serving member of the British Dental Association and acts as a media spokesman. He has made many television and radio appearances and had numerous articles and interviews published in the Dental and and Consumer press. He has been short listed in the Dentist of the Year Awards and has lectured to other dentists on clinical innovations and practice management issues.

For the past 8 years he has been closely involved with the early detection of mouth cancer, lecturing regularly and training dental teams. Philip continues to publish regular articles on equipment and products, clinical techniques, patient care and reviews of professional textbooks. He lectures both to the profession and the public on a variety of dentally related topics. Philip also runs a single-handed private dental practice on the Isle of Wight.

DR HISHAM MEHANNA PhD, BMedSc (hons), MBChB (hons), FRCS, FRCS (ORL-HNS)

Hisham Mehanna is a consultant head and neck and thyroid surgeon, at the University Hospital, Coventry and Heart of England Hospital, Birmingham. He is the Director of the Institute of Head and Neck Studies and Education (www.InHANSE.org). He is also an Honorary Associate Professor at Warwick Medical School. He is the Chair of the Joint Arden Head & Neck Cancer Centre, and the Lead Clinician for Head & Neck and Thyroid Cancer, University Hospital, Coventry.

His clinical interests are reconstructive microvascular surgery for head neck cancer and thyroid and minimal access parathyroid surgery. Hisham is on the Council of the British Association of Head Neck Oncologists, the Council of the Royal Society of Medicine Laryngology section, and the Council of the International Association of Oral Oncology. He is also the Secretary of the Otorhinolaryngological Research Society.

Hisham has a keen interest in clinical research, heading a research team of 10 researchers, and holding approximately £4.5m in research grants. He has published over 40 articles and book chapters, and has given numerous presentations and invited lectures. He also sits on the UK's National Cancer Research Institute head and neck group, and is the Chair of its Surgery and localised therapies subgroup.

MR BHAVIN VISAVADIA BDS (Lond), MBBS(Lond)

Mr Bhavin G Visavadia is a Consultant Oral and Maxillofacial Surgeon. He qualified in medicine and dentistry at King's College London and undertook specialist surgical training at Queen Victoria Hospital East Grinstead, Royal Surrey County Hospital Guildford and at Guy's and King's College Hospitals London.

Mr Visavadia currently works as a Clinical Director for Head and Neck Cancer Services at London North West Healthcare NHS Trust and West Herts Hospitals NHS Trust. He is committed to training junior staff and senior surgical trainees. He has also established a rapid access clinic for suspected neck lumps and oral cancer referrals from GPs and Dentists.

JOCELYN HARDING CEB DipDH 1992, GDC 4276

Joss is a dental hygienist based in Stroud Gloucestershire and has been at Confident dental and Implant clinic for 11 years. Joss has been in dentistry since 1987 and qualified whilst serving in the royal navy.

Her passion for helping the mouths of cancer patients on their journey started three years ago as she started investigating what products were available.

After writing her first article, two helpful leaflets for both healthcare professionals and patients were created by the charity Brushupuk and have been downloaded all over the world. She has now published further practical articles for the dental care of cancer patients and dry mouth.

Joss have spoken at many events and conferences nationally since being published for both patients and medical and dental professionals. Her helpful website, created this Summer, www.mouthcareforcancerpatients.co.uk is regularly updated as new products become available.

Joss is thrilled to be invited to be an Ambassador for MCF and is looking forward to helping more patients and professionals with this area of care.

CHLOE LEWIS

I qualified as a dental nurse in 2005 and spent the first eight years of my career working at my father's dental practice on the Isle of Wight. During this period, I took lots of postgraduate education in the UK and abroad which culminated in me being invited to attend a work placement in one of Germany’s leading specialist dental practices.

Throughout my career I have maintained a commitment to further study, developing a range of extended management and clinical duties. I have been involved with numerous dental societies, have served on the events committee for professional organisations and travelled to conferences throughout the world. This has led to me becoming well-known both among professionals and the dental supply industry. I have written for the dental press, presented series of lectures and provided clinical tips for colleagues. More recently I have gained my qualification as a dental nurse assessor.

I have been involved with the early detection of mouth cancer since the beginning of my career. I really believe every member of the dental team has an important part to play. While no-one wants to see mouth cancer, I am proud to say I discovered one case myself some years ago and hopefully saved the patient the misery of additional treatment that might have been necessary if the tumour had been left unnoticed.

It is the sort of feeling you get from things like that which makes all the effort worthwhile and makes me determined to continue this work!

Patient Ambassadors

RACHEL PARSONS

I am 47 years old, married to Tim who is a firefighter and we have 5 beautiful children.

On Boxing Day 2007 I found a lump on the inside of my right cheek, but it was Christmas, so I didn't have much time to think about it. I was advised by my GP to see my dentist, who told me it was lichen planus, a common mouth infection and not to worry. But six months later the lump still hadn't gone away. Instead it had become enlarged, ulcerated and painful when I bit it. My mum was worried, so I visited my doctor again, not only to put my mum's mind at rest, but mine too. My doctor inspected my mouth and referred me to Coventry University Hospital for a biopsy. I received the news that I had buccal mucosa, a cancer of the lining of the cheeks.

On 5 September 2008 I underwent a nine-and-a-half hour operation to remove the cancer from my right cheek, and replace it with muscle and a vein taken from my left wrist and forearm. Skin was then taken from my tummy to replace the skin from my arm.

I was allowed to leave the hospital six days later, but my battle was far from over. I was unable to open my mouth more than an inch and had to be fed intravenously. I had to exercise my mouth and could eventually eat baby food. Even now I can't open my mouth wide enough to eat a burger, and part of my face is still numb. As well as suffering infections, I underwent follow up work at Birmingham Dental Hospital. The first year was incredibly tough.

I started to raise awareness of mouth cancer 10 weeks after surgery and was invited to start the Launch of Mouth Cancer Action Month at the House of Commons in 2013.

I have very recently been appointed a Macmillan Cancer Carer Support Worker.

Five years on and life is good, although every pain or lump can be scary. I've met some amazing people and been able to support them with my experience. I am glad that I got mouth cancer, as I appreciate everything now. I am determined to raise awareness about the condition that could have taken my life. Our Family Motto since being diagnosed is: "Everything in Life Happens for a Reason" and I certainly believe that is the case.

STUART CAPLAN

Stuart lives in Marylebone with his wife Susan. He is a business consultant at St. James's Place Wealth Management. He was diagnosed with tongue cancer in May 2012 after suffering with a number of symptoms for a year which four of the doctors he consulted failed to diagnose as cancer. His dentist also failed to pick up on his condition.

At that time he was told that surgery was not an option, and so he commenced chemotherapy in June 2012 followed by radiotherapy. An attempt to install a RIG feeding tube failed so the procedure was attempted a second time. This was abandoned when the radiologist realised that due to his anatomy it would have been impossible to successfully insert the tube. All attempts to complete this procedure were abandoned. This meant that Stuart had to struggle through the radiotherapy which destroyed his ability to eat and drink. The first chemotherapy drug he was given combined with the fluid in his abdomen caused by the failed RIG tube insertion caused renal failure. This could have meant that Stuart faced dialysis for life or requiring a kidney transplant.Stuart also underwent intensive radiotherapy. The side effects included severe nausea and various infections one of which attacked his eyes and devoured the skin on his neck and chest. All this meant that he was hospitalised for most of the second half of 2012.

The four months post-treatment PET/CT scan showed that although the cancer had not spread, the combined chemotherapy and radiotherapy had failed to destroy it. At this point he was offered surgery. The surgery offered was a glossotomy which could potentially have had a devastating impact on his life. He was therefore referred to a psychiatrist to assess his suitability for this procedure. Prior to surgery Stuart married Susan, his partner of eighteen years. Following a short honeymoon in Paris he had a PEG feeding tube fitted followed by the surgery on 19 February 2013. The ENT surgeon removed 2/3 of his tongue and the maxillofacial surgeon built a tongue flap with tissue taken from Stuart's thigh. A neck dissection was also performed to remove lymph nodes.

Over a year post-surgery Stuart is active, speaking, eating and drinking. This has involved a lot of hard work and focus but shows the determination to overcome obstacles is typical of him. Life is slowly returning to normal, and in addition to his professional career he also does voluntary work for Mouth Cancer Foundation, The Rarer Cancers Foundation, Macmillan, Cancer Voices and as a Patient Representative at London Cancer. He is also piloting a Skype based buddying and mentoring project. He believes that he may have cancer but cancer hasn't got him. Or to put it another way, in prizefighting there is an expression: "Everyone has a plan until they've been hit." Well my friend, you've just been hit. The getting up is up to you.'

PAUL ROEBUCK

Paul Roebuck As a Talking Therapist, being told "Yes Mr Roebuck, it is Tongue Cancer" did test my mental strength and emotional resolve.

I often say that I pay attention to people for a living; I think about what people think about, especially the "thoughts behind the feelings". Suddenly on August 10th at 11:43am it was my mind, my emotions, my fear, my uncertainty and my doubt which become my preoccupation.

That day changed my life . . .

I felt what I can only described as "disintegration anxiety":
Would I be able to talk? would I be intelligible? Would anyone want to visit a mute Counsellor? What about my wife and kids? What about the bills and debts? What about my hopes, dreams and my life's work? I am 55, at the pinnacle of my personal, social and professional life. And now today, it's in ruins.They're going to cut my tongue out!

The surgery (partial tongue removal and flap, luckily without radio or chemo) was on October 3rd, 2017. Physically it proved to be more challenging than I expected, however I was back in the gym 6 weeks after the Operation, and back at work, in my Counselling chair, talking to people after 12 weeks.

That day did change my life, and for the better, I'm healthier happier, busier and more fulfilled, and I have found my mission: "To provide mental and emotional support to other Oral Cancer patients, survivors and their loved ones "at the point of need" whilst helping to increase global awareness of Tongue Cancer.

By chance, or maybe by design, I recorded my entire journey on social media, from first diagnosis through treatment and recovery and here is the link, and my email address:

https://www.facebook.com/TongueCancerJourney/
Email:TongueCancerJourney@gmail.com

As a Patient Ambassador for the Mouth Cancer Foundation I will never claim to represent other patients or speak for them. However, I will be here for them and their loved ones "at the point of need", to give them their voice, and always ensure they are heard.

EVA GRAYZEL

I'm a stage IV survivor or oral cancer at the age of 33 in the United States. I never smoked and rarely drink. Why was this obvious sore on the lateral border on my tongue not investigated properly? I believe it's all about education. Dental professionals need to take continuing education on the current research on mouth cancer. This is not about cosmetic dentistry; this is about saving lives. The general public needs to be educated, too, so they know what a dentist is looking for when they do a mouth cancer screening. If I knew some of the signs, a non-healing sore being one of them, I would have been more proactive in finding a solution to the pain and discomfort I felt on my tongue. Instead, I just followed doctors' orders, which was, "If it doesn't get better, come back." Actually, by saying this, they were asking me to self-diagnose myself. They should be the ones checking the symptoms and deciding what the next step should be to find a solution.

Having two young children watch me endure the devastating and public effects of treatment, I wrote two children's books, everything I wished my children had during that time to empower them with understanding and how to make a difference. 'Mr. C Plays Hide and Seek' is written in first person by Mr. C the cancer cell himself. Check out the books at Talk4Hope.com.

It's been 15 years since my late stage diagnosis. I beat the odds. I can't ethically live this beautiful life without doing what I can to prevent this disease from happening to others. I've developed an oral cancer awareness campaign called, Six-Step Screening, six steps to a thorough oral cancer screening. SixStepScreening.org. Due to the new association with the HPV virus, I've written a 'Rap' to raise awareness among young people:https://www.youtube.com/watch?v=448ah5QS4rY. I am proud to associate myself with The Mouth Cancer Foundation who works equally as hard educating the British public about mouth cancer, and in turn inspires dental professionals to stay up-to-date on the latest discoveries about this disease. Keep up the great work!

STEVE HARRIS AKA HAGG

Steve, who is better known as Hagg, is 43 years old and has been married to Hazel for 21 years. He was diagnosed with mouth cancer in 1997 when he was just 28 years old. He had extensive surgery and Radiotherapy followed by reconstructive surgery.

Steve has been a patient ambassador for the Mouth Cancer Foundation for a few years now. He frequently attends patient events on behalf of the charity.

Steve says "The Mouth Cancer Foundation has helped me and also, helped me to support other cancer patients when they most need it. I'm into motorcycles, tattoos, tortoises and music. I worked as a Health Care Assistant for a while and I'm now a Physiotherapy Assistant at the hospital that gave me such brilliant care and ultimately saved my life."

People's Ambassadors

PAT JONES

Pat Jones and her family are tireless campaigners for the Mouth Cancer Foundation. Pat admits that before her daughter, Clare Jones, fell victim to tongue cancer at the age of just 23 years old in April 2007, she knew little about the disease. Now Pat is on a mission to raise as much awareness about this lesser known cancer as she can. She says "25% of mouth cancer cases are not associated with any known risk factor, hence the need for vigilance. If you notice a lump in your mouth that wasn't there before or a mouth ulcer which lasts for more than 3 weeks, you should see a dentist or doctor immediately."

Clare was a student at Loughborough University when she was first diagnosed in February 2003. 5 months later she became a member of the Mouth Cancer Foundation's Forum after an operation to remove the right side of her tongue, reconstruction with a flap from her right forearm and a neck dissection. Clare joined the Mouth Cancer Foundation initially to find out how others coped. In Clare's words "I would like to discuss my feelings with people who have experienced the same operation as myself".

In June 2005 Clare graduated from Loughborough with a first in Information Management and Business Studies and got a job at the Swansea NHS Trust. Within 12 months Clare had secondary bone cancer and bravely went through the treatments offered. It was a difficult time for her and she was very, very scared. She worried about the effects of chemo and fertility but finished her chemotherapy and was looking forward to a better 2007. Unfortunately, the MRI scans showed no change in the size of her cancer, which eventually spread to her brain and Clare passed away peacefully with her family by her side.

Clare and her family have always been valued members of the Mouth Cancer Foundation and are happy for her story to be heard to educate and inform others about Mouth Cancer. The charity is indebted to the fundraising and awareness campaigning that Pat does in memory of Clare. Clare would be hugely proud of her family.

TIM PARSONS

Tim Parsons and his Wife, Rachel - who is a Patient Ambassador - have worked continuously over the last 10 years, to raise awareness of mouth cancer. Rachel was diagnosed with mouth cancer in 2008, and underwent radical surgery. Tim was her caregiver during this time and for the following two years, balancing caring for her, whilst looking after their 5 small children, keeping house - and working full time as a Firefighter!

He is painfully honest about this time. "We were left on our own following Rachel's operation. I received little support from my work - I was entitled to one day off - yes, one day - to care for Rachel. Firefighters make things right for people, but I couldn't make things right for her, and felt helpless. Cancer nearly ended our marriage and nearly led me having a breakdown."

Thankfully, they pulled through the dark times and have since strived to raise awareness of mouth cancer and regularly lecture professionals telling their story. "People think that Firefighters are brave lifesavers" Tim says. "I don't think of myself as a lifesaver. But those who deal with the patients - the Dentists, Doctors, Dental Nurses, Hygienists, Consultants, Nurses, Medical and Dental Staff - and those who educate others - they are the lifesavers through their work, and they are in the front line in the fight against mouth cancer".

He continues "And the brave, well, they have got to be the patients and survivors of mouth cancer, who bear their suffering and scars with courage and fortitude and pride. The Mouth Cancer Foundation carries out amazing work to support sufferers and their families and loved ones, as well as educating others and I am honoured to be a People's Ambassador"