OMFSAboutFace - Newsletter No. 1. Autumn 2001

Welcome to this, our first newsletter. As a new Support Group we are only just emerging from the embryonic stage, still uncertain into which directions the signposts will lead us. We know from whence we came, but only time will clarify the exact format of future newsletters. It may well be that visitors to our website, or readers of our newsletters, will tell us what they would like to see. We will be happy to receive your ideas and suggestions and perhaps, in future issues, share some of your experiences. Until then may we first make you aware of some of the facts that we already have available.

DID YOU KNOW THAT

1. Over the past three decades the incidence of oral cancers has increased in both the UK and the USA. The increase relates in particular to the under 50 years age group in the USA and for women in both countries.
2. Cancers of the tongue had previously been regarded as a disease that affected more men than women. The highest incidence occur after the age of 60. It rarely occurs below the age of 20.
3. In England and Wales between 1962 and 1967 and again in the early 1980's, registration of tongue cancer increased by 6.5 percent for men and 15 percent for women, a 10 percent increase overall.Despite the efforts of the cancer registry, oral cancer may be under reported by up to 25 percent in the UK.
4. GOOD NEWS:  The widespread application of the microscope and the development of micro instrumentation means that surgeons are now able to join blood vessels together that have an internal diameter as small as 0.88mm. When these techniques are used on the tongue, in most cases, almost full functionality and form is restored.
5. As with all cancers, early detection plays an important role in the recovery success rate. Members of this Support Group who have already had successful surgery urge readers to realise the importance of regular dental check-ups. In Marlene, Karen, and Joyce's cases, the abnormalities were first detected by their dentists. VISIT YOUR DENTIST FOR A CHECK UP AND GO REGULARLY

POST OPERATIVE CARE

All oro-facial cancer patients are concerned about regaining their ability to speak after surgery. Communication between us greatly enhances and enriches the quality of our lives, therefore speech therapists play an important role in the patients post-operative cure. Joyce , Karen and Marlene have vivid recollections of their first attempt to speak and the depression that crept in when they failed to speak as fluently as they previously had.Marlene recalls the supreme effort of will and 100 percent concentration required to say the word 'CATERPILLAR', bringing up the back of the strange new alien tongue to the back of the mouth to form the 'K' sound. Then pushing the tongue tip to the back of the upper front teeth to say the 'T' and finally lifting the whole tongue completely for the last syllable.
Over the weeks, patients continue their lip and tongue exercises at home and gradually, as the fluency returns, they become more intelligible to others and a lot less frustated in themselves.

A QUALITY OF LIFE SURVEY

A Quality of life survey has recently been circulated to ex-patients of Addenbrooke's 'Maxfac' Unit that, after study, will allow the team to further understand:  (1)   patients perception of their preparation for the operation;   (2)   the operation itself;   (3)   the post operative and after care service.
From the patients point of view, it is difficult to see how the Addenbrooke's Medical and Surgical teams can improve on their current quality of service, but as dedicated members of their profession, continuous improvement remains their aim.

OMFSAboutFace - Newsletter No. 1. Autumn 2001

FUND RAISING

The Phoenix Singers, a choir from Swaffham in Norfolk, to which Marlene belongs, held a special concert at the Roman Catholic Church in Swaffham and raised £1500.
Joyce, and her husband Gordon, staged a 'Yard Sale' and raised a brilliant £500.
Karen's husband Paul is aiming to run in the London Marathon next year. We wish him good luck and at a later date we will be requesting generous sponsorship from as many sources as we can find!

FINALLY

Not for nothing did we choose a "Smiling Face" for our official logo. There is much to smile about as modern cancer research moves forward and new technology and techniques further enhance the surgeons considerable skills.
Although facial and oral cancer is a terrible disease and post-operative recovery is long and arduous, the prognosis rate is good and in the majority of cases the patients can be restored to a rich and full lifestyle.
So Be of good of heart and take encouragment from the success stories that we have illustrated in this, our first newsletter.
Please contact us with your ideas. Your suggestions will greatly add to the success of the AboutFace Support Group. Until the next newsletter:- good luck, God bless you and be happy...

NB Not eveyone has access to the Internet, therefore copies of this newsletter will be distributed to Doctor and Dental Practices, Cancer Research and Imperial Cancer Charity shops.

The Phoenix Singers in concert where they raised over £1500

Joyce and her husband Gordon at their Yard Sale where they raised over £500