Raising mouth cancer awareness

Ken’s story

When Ken Mulhall was told he had throat cancer on 1 April 2008, he hoped it might be an April fool’s joke, as he had never heard of mouth cancer! But it wasn’t. Feeling scared, the first thing he did was search the internet. Reasonably experienced with searching the web, he nonetheless had trouble finding the information needed. Eventually, thinking he had discovered something worthwhile, Ken started reading about the ‘11 strategies to cure cancer’. He read through 16 pages, thinking he had found a good source of positive information, but then got to the last page, where it asked for $1,000 for the definitive answer; a distressing con for anyone to come across, let alone someone in a vulnerable state searching for support. Fortunately, soon after that upsetting episode, Ken found Dr Vinod Joshi’s Mouth Cancer Foundation website, which turned out to be very helpful.

This experience planted a seed in Ken’s mind that something more needed to be done to help raise awareness of mouth cancer in Ireland and provide suitable information and support for mouth cancer patients.

First, however, Ken had his own personal fight to win. Following some uncomfortable surgery, Ken started radiotherapy at St Luke’s Hospital in Dublin on 9 June 2008. With 35 gruelling sessions over a seven-week period ahead of him, Ken had another big issue on his mind – he was still smoking. Ken is adamant that he needs to share this part of his story because, in his own words: ‘I was a fool’. The truth was, just half an hour after being diagnosed, Ken lit a cigarette. He had gone through all the surgery and preparation for the radiotherapy, including having the mask made and the scans, still hooked on smoking. During that first week of radiotherapy in the hospital he sneaked out for a cigarette in the evening. The first weekend he returned home he smoked about 60 cigarettes in one day, which made him sick. He was addicted.

He says despite analysing and talking to himself all the time about how ridiculous it was that he was smoking and also having radiotherapy, he had been unable to stop. In the end, it was only when his daughter told him that he shouldn’t be having the treatment if he persisted in smoking that he was able to stop. Somehow, hearing his own logic from someone who loved him dearly was the catalyst for him. From the Monday he went back into hospital for his second week of radiotherapy, he stopped and has not smoked since. He used patches for the first week or so and the staff were all very supportive.

Over the weeks of treatment, Ken went through many ups and downs. On 1 September 2008, his first examination following completion of the cancer treatment, Ken was advised that it had worked and the throat cancer had gone. But it was just a milestone on the long journey towards getting better, if such a thing is possible after the battering the disease inflicts. He has suffered from mouth ulcerations, difficulty with speech and swallowing, a dry mouth, fatigue and depression, as well as the inevitable false alarms of the cancer returning. You can read more on his blog here. 

Throughout his treatment Ken wrote a blog, which can be read here

The Mouth, Head & Neck cancer group

The Mouth, Head & Neck cancer group (MHNC) started life as an idea of two people: Lia Mills, another mouth cancer survivor, and Dr Denise MacCarthy, a consultant at the Dublin Dental School and Hospital. They wanted to increase awareness of mouth cancer and provide information for patients. Ken met Lia at the local head and neck support group at St Luke’s hospital, while Denise was Ken’s dentist throughout treatment. Ken joined them, and the three of them met with Deirdre Sadlier, Pheena Kenny, Etain Kett and Patricia Gilsenan-O’Neill of the Dental Health Foundation. They also received great support and advice from June Nunn of Dublin Dental School and Hospital. The core group met once a month to discuss what they needed to do. They were full of ideas but soon realised that achieving what they wanted would take longer than they had first supposed.

As Ken says: ‘Reality sets in a little bit when you have to deal with the various organisations; sometimes we found that we made one step forwards only to then take two steps backwards.’ However, the organisation’s key goals never changed – namely to raise awareness and make mouth cancer information available in Ireland. 

The group decided to take three steps. First, they held an inaugural event on 13 November 2009 at the Dublin Dental Hospital with Dr Vinod K Joshi, founder and chief executive of the Mouth Cancer Foundation in the UK, Lia and Ken as speakers. This was a great success, with feedback from the delegates indicating a strong level of support for, and interest in, establishing a mouth cancer awareness campaign in Ireland.

Pictured at the mouth cancer awareness seminar held on 13 November 2009 are: (l-r) Etain Kett, Dental Health Foundation; Tina Gorman, Irish Society for Disability and Oral Health; Ken Mulhall; Deirdre Sadlier, Dental Health Foundation; Vinod Joshi, Mouth Cancer Foundation; Lia Mills, mouth cancer survivor; Denise MacCarthy, Dublin Dental Hospital; and Pheena Kenny, Dental Health Foundation

Next, they are producing a mouth cancer leaflet, something that can be given to patients, carers, doctors and dentists that will detail the causes and the symptoms, what to do, how to get checked and what might happen.

Dr Denise MacCarthy took the lead in producing the leaflet, along with Dr Eleanor O’Sullivan of Cork University Dental School and Hospital. However, it is essentially a collaborative group effort. They sought the assistance of the Irish Cancer Society (ICS) and the ICS has agreed to distribute the leaflet. The Dental Health Foundation is going to pay for the production of the leaflet, which the ICS will add to its normal distribution process. This means that when ICS sends out leaflets, that of MHNC will get sent out too. On it there will be the ICS logo and the helpline number. This means that if somebody has the brochure – they could be a professional, carer, sufferer, it doesn’t matter – they can then ring the helpline, which is manned by specialist oncology nurses, who can assist the caller to get the help they need. There will also be a link on the ICS web page to the Dental Health Foundation’s website, which hosts the MHNC web pages for the time being.

Ken has high hopes for an MHNC website in the future, intending for it to provide all sorts of helpful information, and perhaps even hosting a forum one day. One thing Ken does want to see on the website as soon as possible is information about support centres. He feels strongly that this aspect of information needs to be provided. Ken tells the story that a couple of weeks after he had finished the treatment, he had woken up with a swollen neck full of fluid. His neck was so bloated he couldn’t do his shirt up. Naturally, he panicked; he just didn’t know what was going on. Remembering that a woman he had met at the St Luke’s head and neck support group had advised him about a particular support centre, Ken made his way there. He discovered that, for them, dealing with someone with mouth cancer was new. The centre had historically dealt predominantly with breast cancer patients and Ken was one of the first men to attend there. However, the Cuisle Centre, Portlaoise, was able to provide Ken with the treatment he needed: manual lymph node drainage. 

Ken says that most men would have walked away, thinking it was not a place that could help them. Beyond providing necessary medical treatment, Ken found the staff there to be a great support. Ken relates the story of how he had been unable to get any jobs soon after completing his treatment. Ken attended a number of job interviews. He says: ‘Imagine me as white as a sheet, basically a dead man walking, with a suit on. I could hardly talk and I was on strong medication. When I did talk it was absolute nonsense! So, I didn’t get any of the jobs. I found it very difficult to cope with the rejection; these guys provided fantastic support.’ Ken feels that mouth cancer patients need to know about the wonderful services these support centres can provide.

MHNC’s third step is to officially launch the organisation in November 2010, when it is Mouth Cancer Awareness Week in the UK, but this is still being discussed. MHNC hopes to mark the launch with a short mouth cancer awareness event of perhaps a couple of hours’ duration tailored for patients, carers and professional people, as well as to get the attention of the media. The MHNC team is also hoping to get permission from the hospitals in both Dublin and Cork for an open day for the public to come in and have a free mouth check on a Saturday morning. 

One step further

Another idea of the MHNC team is to have a sponsored mouth cancer awareness walk. When Ken was undergoing radiotherapy in St Luke’s hospital, he was in contact with the Mouth Cancer Foundation in the UK and learnt about its 10k walk for September 2008 in Hyde Park, London. Ken had wanted to participate then but he wasn’t well enough. Not one to be easily defeated, Ken promised himself that in 2009 he was going to get to Hyde Park and do that 10k walk, and he did. Ken went with his partner, Ann, and his daughter, Ann-Louise, who lives in London, who were both armed with yoghurts and rice pudding pots for him to eat on his way round, as well as lots of water to help combat his dry mouth around the 10k course. Candidly, Ken says: ‘I did it but had to go back to the hotel and sleep for 24 hours!’ He raised about £700 in the process.

Ken, along with his partner, Ann, and daughter, Ann-Louise, completed the Mouth Cancer Foundation sponsored walk in Hyde Park in September 2009

Following that experience, Ken wants to do something similar in Ireland. He is organising a walk in Phoenix Park, Dublin, on Saturday, 2 October 2010. Ken says everyone he has spoken to about it is keen to take part, and so he is hopeful that a good few hundred people will attend. ‘It will be a fun day for all,’ he says. He is now creating a poster to publicise it and says he hopes many dental practices will want to participate.

The final words must go to Ken: ‘I am probably the happiest I have been in my life for a long, long time. I have three wonderful children and been lucky enough to have lived and worked in many different countries, experiencing many different cultures. Even though there have been really dark days, right now, today, I am doing okay. When you are facing death, you do look back at your life and learn to value the simple things and other people. Without the love, care and support of my partner, Ann, none of this would have been possible. I just feel I want to help other people and leave something behind. It gives me a real drive and passion that has been missing for some time. As long as I stay healthy, it’s great even to do a few days a week. It’s great to be able to do something!’

For further information or to help support the Mouth, Head & Neck cancer group, please contact Ken Mulhall by email at kenmulhall@gmail.com.