OMFSAboutFace - Newsletter No. 4. Summer  2003

We are delighted to report on our new alliance with the Facial Surgery Research Foundation, "Saving Faces" formed by Maxillofacial Surgeon, Iain Hutchison, with whom our own surgeon, Leo Cheng now works at St. Bartholomew's and the Royal London Hospitals. This enables Mr. Cheng to maintain his close contact with us and also retain his position as Director of the Support Group.

Fund Raising

Our first fund raising event for the Foundation was a concert at the beautiful ancient listed Chapel of St. Nicholas in King's Lynn, Norfolk, England where an appreciative audience enjoyed a musical programme by three choirs - King's Lynn Male Voice Choir, a second Male Voice Choir from Alfreton, Derbyshire and the ladies choir, The Phoenix Singers from Swaffham, with whom one of our members sings. Several Support Group members were in the audience, together with Mr. Cheng and his wife and family.
A cheque for £250 was presented to Mr. Cheng during the interval and, with money still coming in, it is hoped to top the £500 mark. Sir Bobby Robson, himself a mouth cancer survivor was unable to be there, but he sent his good wishes, coupled with a signed football which has been placed on an Internet Auction Line. We are disappointed that, so far, little interest has been shown, but King's Lynn choir is exploring other avenues and has promised to keep us posted on further developments.
The audience also learned a lot more about the Foundation during a short talk by Mr. Cheng and he generously paid a warm tribute to the valuable contribution made by the Support Group. (See Mr. Cheng's speech on page 2 and 3).

A Reminder

We would reiterate our earnest commitment to assisting anyone needing help or advice wherever and whoever they are. Existing members of the Group continue their close association with each other and are only too happy to talk or write to others and share their experiences. If you live within a reasonable travelling distance they might also pay you a visit. One of our members already maintains a regular correspondence and telephone calls with a lady in Oxford who has grown to be a good friend and they have even met on one occasion in order to put "faces to voices". We are always willing to pass on our telephone numbers or addresses so please don't be nervous or reluctant to get in touch with us.

New Database at Addenbrooke's

We are pleased to tell you that a recent letter from the Medical Director of Addenbrooke's Hospital, Robert Winter, informs us that our earlier fund raising efforts have enabled their Maxillofacial Department to put in place a computerised database containing "significant information about all patients with head and neck injuries." They say that the database has enormous value in both clinical management and research. They send us their best wishes for the continued success of our Website and Support Group and we, in turn, re-acknowledge our own gratitude to their surgical, medical and clinical teams and also the excellent post-operative care they still extend to us. For those interested, the department can arrange for an inspection of the database.

OMFSAboutFace - Newsletter No. 4. Summer  2003

It is really nice to be in the company of 3 super choirs. Thank you for inviting my family and I to share the joy and to give our ears a special treat. I remember well when you produced a similar concert 2 years ago in Swaffham's Catholic Church raising funds for Maxillofacial Surgery. You would also remember that the journalists and camera men were also there too, publicising the success of the concert, but more importantly, the courageous and remarkable recovery of Marlene Gaunt, your soprano singer, after her major tongue cancer surgery. Against all the odds, Marlene had two different cancers, major reconstruction of her tongue with tissue from her forearm and intensive hospital treatment, Marlene regained her soprano voice within 6 months and returned to take her rightful place in the Phoenix Singers. The press, the radio and television reporters including those from ITV and BBC local news all rushed to report this amazing human story. Marlene did not stop there, she enthuses my other cancer patients (for instance Joyce and her husband, Gordon and Frank who are here with us this evening) to raise money and to go to the media to raise the awareness of mouth cancers. She also set up the About Face Patient Support Group and its own website with the help of Peter Young and other cancer patients. Over the last year, she has also received support from a fellow oral cancer patient, Sir Bobby Robson. The About Face Support Group has been tremendously helpful to countless patients and their carers. Through their own website, it provides user-friendly information, case studies of patients' own experience and newsletters for others to read and access 24 hours a day worldwide. I have had patients from Australia and America coming to see me for advice. Many people in the UK benefited from their effort including many 6th formers in secondary schools when Marlene and other patients came with me to schools sharing their experiences on cancer treatment and raising the awareness of mouth and facial cancers.

Now that I have moved to Barts and the London Hospitals joining Iain Hutchison, the founder of Facial Surgery Research Foundation, it is logical now what started as a great idea with Marlene, her unique human story and the About Face Patient support group, it is now turning into a national project and what we hope to do is to set up a national patient resource, linking with the national research charity.

Iain Hutchison, my close colleague, and I are acutely aware of the little funding available for research into the face and mouth. Our aim is to improve the outcome of mouth and face cancer and injury, and through research into their causes, prevention and treatment. As I am the director of the Patient Support Group, Marlene, her fellow patients and I will be concentrating in the individual aspects of patients, supporting them with information, friendship and advice.

Isn't it amazing, that as you look around in this chapel, you can see everybody's face, you can't see their hands, their bodies. Mouth and facial cancer can be the most mutilating disease and not only it is mutilating, but it also interferes with people's ability to lead a normal social life because they can't speak or sing well, they can't eat or chew well afterwards. We must find better treatments, we need your help. Why is it that a disease which is so visible and so disfiguring, people are not funding research into. I tell you why - it is because it is mainly a surgical disease at the moment - we are working to improve the outcome.

The treatment of mouth cancer is probably the most expensive treatment in the Health Service at the moment because of the length of operations and the sophistication of the operation. Although I, the surgeon, can do the surgery, I would like to see at the end of my career when I come to retire, that the surgery is no longer necessary. The only way to do that is by research to improve treatment. We therefore need funds.

The Facial Surgery Research Foundation is the only charity leading national research into this disease. We need your help.

There are millions of facial injuries in the UK, some of them may be trivial, but to each person who gets them because it affects their face, it is dreadful and traumatic to that particular person. Whilst we can achieve very great results to some people, there are still some people we do not achieve perfect results. We want to achieve perfect results in everybody.

OMFSAboutFace - Newsletter No. 4. Summer  2003

On behalf of the About Face Support Group, the Facial Surgery Research Foundation, Singers and organisers, I thank you all for supporting us here tonight. I know that people don't want to hear a long winded speech from a surgeon because you have come along to listen to the super music. But I do want to tell you a few things:
First of all - we are raising funds for something which affects people dramatically - disease and injury affecting the face and mouth - isn't is amazing that hardly any money is spendt on research in this area - our face is our stage to the world, you can't hide it.

You can see here, a classical and unique example of somebody who's power and spirit has risen above it and that is Marlene Gaunt. She has recognised the need for more support for patients and carers, and for better research.

I want you to help as well, help us to strengthen the About Face Patient Support Group that would provide support for individual patients. But also help us to conduct research.

We aim to treat patients better and we need to continue to strive. Iain Hutchison and I, the surgeons will do this for nothing, but we need help from people. We need statisticians, research nurses, psychologists, supporting us in collecting data and conducting research.

Finally may I thank each singer here today, haven't they given us a super and roof-raising performance us and we have got the 2nd half to enjoy, and most important of all, may I thank you all for coming to support and share in this special concert raising fund to support research in cancer and injury affecting the face and mouth.

World's First Tongue Transplant

Did you read the miraculous news of the world's first tongue transplant carried out in Vienna? What an incredible feat!! We hope to give our surgeon's comments on this ground breaking achievement. In the meantime we "take off our hats" to the skill and brilliance of all maxillofacial surgeons in this and other countries. Cancer research teams often report on advances in the treatment of cancers but this piece of news is breath taking and surely unparalled in oral surgery.

Further information on the Facial Surgery Research Foundation can be found at their website at www.savingfaces.co.uk Registered Charity No. 1081214