OMFSAboutFace - Newsletter No. 6. Summer 2005

Welcome to this, our 6th Newsletter since forming our Support Group back in 2001. In this issue we tell you about a Study Day event held by the King's Lynn Soroptomists in 2004, a sad event, a happy event, an article by Anne O'loughlin on Oral Health Care and few words from Peter Young who runs our Web Site. We always welcome feedback from our readers on our newsletters and web site content. If you have any comments, ideas etc. please email us at info@omfsaboutface.org.uk or ring Peter on 01760 724120.

King's Lynn Soroptomists Study Day

Our Support Group and the charity we champion gained good publicity at a Study Day held earlier in 2004 by King’s Lynn Soroptomists. Together, with a concert in the evening, the event, entitled “Brave Faces,” raised over £I,000 for the Facial Surgery Research Foundation. The Charity’s founder, Iain Hutchison and our own surgeon, Leo Cheng, spoke about their work as maxillofacial surgeons and their enthusiasm for the Charity’s aims and ambitions. They were joined by two members of the support group, one speaking of her jaw cancer and its subsequent return and the other of her tongue cancer. Both mentioned the complexities of learning to speak and eat as being the two main problems face cancer patients have to come to terms with. The Study Day was comprehensive in its format and also included talks from a speech therapist, dietician and oral hygienist, thus proving of great interest to both lay people as well as those involved in medicine and dentistry. The whole mood of the day was very upbeat and positive. Mr. Cheng met many of his past patients and there were firm commitments of support, both financial and in other ways from members of the public.

It was a really good day and we are most grateful to the ladies of the King’s Lynn Soroptomists for highlighting the problem of facial cancers and diseases in such a wonderful way.

The evening’s concert was provided by Springwood High School Concert Band, together with the Phoenix Singers , the ladies’ choir with whom one of our members sings and also the King’s Lynn Male Voice Choir, both conducted by Marcus Harley. In the interval Mr. Cheng accepted cheques from Ann Wells, the Soroptomist president and Ivan Gerstel of Wootton Bridge Club.

ACKNOWLEDGEMENT We should also like to thank Stephen Fry, actor, writer and broadcaster, for his message of support to the Group and also his special gift of an autographed selection of C.D.s of his reading of a Harry Pottter book which helped to raise funds at the Study Day.

Mavis Elmer

On a sadder note, we record with great sorrow, the death of our dearly loved friend, Mavis Elmer, at the age of 68. Mavis had battled with her mouth cancer for eight years and, in that time, never regained her ability to eat solids. She bore her disability and pain with enormous courage and dignity, tinged at times with wonderful humour and she would often joke about having to take her liquidizer with her in much the same way as a mother would take her baby’s bottle with her when going out.

The Support Group was represented at the funeral service by one of its members and Mr. Cheng, Mavis’ surgeon, gave a very moving eulogy, paying tribute to the brave manner in which she bore her illness. Mavis was a lovely lady - all of us feel very privileged to have known her and our thought and prayers are with her son and daughter in law, Jonathan and Sally, and her two grandchildren, Kayleigh and Harry.

Generosity

Some news of a generous contribution to our charity. Cy Payne‘s "Swing Band" of Downham Market (Norfolk,) presented a cheque for £200.00 to Support Group member Frank Osborn and our picture shows him receiving the donation at an official ceremony. A further cheque for £50.00 came from the Retired Tenants of Vicarage Court, in Poole, Dorset and we are most grateful for their kindness and generosity.

OMFSAboutFace - Newsletter No. 6. Summer 2005

A Carer’s Story
By Sally Elmer (Mavis's Daughter in Law)

Mavis Elmer 1935 – 2004. Caring for a loved one with a terminal illness is something you dread. We did. But, somehow, reality takes over and you have to become a carer. We cared for Mavis throughout her illness. We didn’t always get it right; we didn’t always say the right thing; we didn’t always do the right thing, but we always did what we thought was best for Mavis. If we got it wrong then we were told so in no uncertain terms

Mavis was strong throughout the six years she lived with cancer. She needed our opinion and she needed our reassurance frequently but didn’t always take it! But that allowed her to make an informed choice. We laughed with her and we cried with her. She needed some very wide shoulders to share the load and I hope we made her feel less isolated.

Later in her illness we became more “hands-on” for her but Mavis was very independent and needed very little help with her chores. She needed reassurance as much as anything.

We made informed decisions together about Mavis’s care and only did what she wanted. Mavis always said when she couldn’t look after her home she wanted to go into hospital and we could only carry out that wish for her.

We’ve learned that carers do just that------------ they care what happens to you and they respect the patients’ wishes. I believe we did this and so did the excellent nursing team. Mavis had both at home and in hospital. Our practical help was minimal compared to the care we gave to Mavis to empower her to live her last days with courage and dignity.

END

Dear Readers,
I am sure you will agree this is a very moving story. Friends and hospital staff who saw Sally with Mavis, always believed they were mother and daughter as their unique bond of mutual love and respect was always so evident. Thank you for sharing your story with us, Sally. In spite of Mavis’ death, Sally shows a continuing interest in our Website and we are so grateful to her for this. Sally’s charitable interests reach out ever further as she and her six-year old daughter, Kayleigh, also took part in Tesco’s sponsored "Race 4 Life" event in June this year. Kayleigh was one of the youngest competitors and together they raised £152.70 for Cancer Research. They are eagerly awaiting next year’s event when they hope to beat this amount. At the time of the race, little Kayleigh said, "I still remember my Nan and I want to raise money for people like her". On the back of her shirt was a sticker saying "In memory of my Nanny" and our picture, taken for the Peterborough and Evening Telegraph (issue 17th June 2004) shows just how much the whole family enjoyed the day.
For several years Sally has participated in the Macmillan "The World’s Biggest Coffee Morning" and this year she held one in her own home and raised the magnificent sum of £411.18. Well done, Sally. We applaud you for your wonderful work and thank you for maintaining your close association with our Website.
Nearly four years ago, another of our members was befriended by a mouth cancer patient living over 100 miles away. She had read the national publicity associated with our member’s surgery and offered her valuable experience how to handle it, as well as boosting her morale at a time when it was most needed. Our About Face member recently heard of her friends death in a telephone call from the daughter who also added how much her mother had gained as well from the exchanged letters and phone calls and one rare, delightful meeting when they were able to put faces to voices. It was really uplifting to know there were such positive benefits on both sides.

Isn’t this what our Website is all about? We believe so, dear readers, so if anyone has problems and feels the need to talk, please don’t hesitate to contact us. If it’s a problem that we, as lay-people, cannot help you with, then we will pass your concerns on to others who have the training and experience to deal with it.
We are here for you. Please don’t forget this. This is YOUR Newsletter.

OMFSAboutFace - Newsletter No. 6. Summer 2005

ORAL HEALTH CARE

Anne O'loughlin Oral Health Educator Queen Elizabeth Hospital Kings Lynn

As the mouth is the entrance to the digestive tract, it is open to bacteria from food and the air. Although saliva has some control over bacterial growth by washing them away and down to the stomach, where they are destroyed by stomach acids, there will be some left behind, these are the ones that we need to remove to promote healing and stop infection.
So good Oral care before during and after treatment can prevent and reduce the incidence and severity of Oral complications, enhancing both patient survival and quality of life.
Mouth care is an individual thing as we all have different needs, and no two treatments are the same, these needs will differ according the age, general physical well being and can also be influenced by medications, and treatments such as Chemotherapy and Radiotherapy.

Side Effects Of Chemotherapy:

These can be bacterial and fungal infections giving the patient a sore mouth. To help with these problems you should rinse your mouth with a mouthwash after meals (chlorhexidine mouthwash is good as it inhibits the formation of bacteria).
Use a soft toothbrush to clean your teeth, a soft baby's toothbrush can be used as it has a small head which will help with access.
If you wear dentures these should be cleaned after each meal and left out at night to allow the mucous of the mouth to breath.
Use any medication prescribed regularly to alleviate soreness.

Side Effects Of Radiotherapy:

Can be, depending on dosage, the reduction or cessation of saliva production. This affects swallowing, chewing and speaking.
The name for this is Xerotomia (dry mouth) and the symptoms of Xerostomia can be helped by:
Frequent sips of water/milk or other sugar free non acidic drinks.
Saliva substitutes that lubricate your mouth.
Chewing sugar free gum or sucking sugar free sweets.

With the reduction of saliva there is an increased risk of caries (decay), so a daily fluoride(non-alcohol) mouthwash at a different time of day to toothbrusing will help prevent caries and promote enamel remineralisation.
Normal twice day toothbrushing is still advised with a fluoride toothpaste, but spitting out afterwards rather than rinsing should be advised as this increases the maximum affect of the fluoride toothpaste.
It is necessary to avoid strong flavoured toothpaste,hard spicy and acidic foods,alcohol, and tobacco, fizzy drinks and sweets as these may traumatise and irritate the gums.

What is the purpose of saliva?
Saliva has six main functions:
Lubrication:facilitating chewing,swallowing and speech.
Cleansing: washing away food debris from the mouth and teeth.
Buffering: Neutralising acid produced by the plaque bacteria.
Digestive:Starting the breakdown of carbohydrates.
Remineralisation: Helping repair the early stages of tooth decay.
Protection: Antimicrobial protection against oral infections.

Web Site
Back in early 2001 I was introduced to "Marlene", who needed someone who could create a Web Site for a Cancer Support Group that she and Leo Cheng were setting up. I met Leo and we were soon exchanging ideas and the Web Site was born
Whether it be a friend or relation who has died of, or is suffering from, cancer, we're all affected by it. I feel very proud being associated with such a worthy cause and enjoy doing what I can to help the Support Group.
What started out as a relatively small Web Site has grown into some seventy pages of data with over sixty images. We get queries from people all over the world and send them advice where possible or recommendations where applicable.
The Web Site is now almost four years old and could do with a complete overhaul and modernisation to bring it's coding up to the current standards. I think I might have enough work to keep me going for a few years yet! If enough of our readers are interested, in another article i'd like to explain some of the workings of the Web Site. Peter Young

OMFSAboutFace - Newsletter No. 6. Summer 2005

From Sally Elmer, daughter-in-law of Mavis Elmer

EULOGY

MAVIS ELMER 17.6.1935 - 16.3.2004

Mavis was a lady of great resolve and fortitude, which was tested to the limit by her receiving the news that her tongue cancer had returned in Feb 2003. This was just six weeks before the birth of her second grandchild, Harry. Mavis died two weeks before his First Birthday. She adored Harry and his big sister Kayleigh who is six and it was the children who gave Mavis her great determination to carry on and remain in full control of her life and emotions. Her bravery in front of them has been an example of self-control and respect for other peoples’ feelings, which will live with us forever.

Mavis was first diagnosed with tongue cancer in May 1998 when she received radio-active Rod treatment; then in October 2001 she had surgery to remove part of her tongue and a graft taken from her forearm followed by six weeks of radiotherapy. A brave feat all told.

Mavis enjoyed relatively normal eating skills until her major operation when she had to take a liquidised diet__her eating really never returned as a pleasant and socially acceptable experience. Mavis wore dentures and she was never able to use them again. Although much was done to help her. Mavis bore this circumstance with dread and also joy that she was still alive. She tried lots of ways to compensate and lots of different foods but she never was able to manage the fish and chips she longed for. “Some things are never the same mashed up” she said.

Mavis died in Addenbrookes Hospital where everyone had become great friends to her, a place of safety amid the dark days of surgery and a place of peace at the end of her life.

CRANIO-MAXILLOFACIAL CANCER & RECONSTRUCTION DAY

Towards the end of October, several of Leo Cheng’s patients travelled to the Royal London Hospital to take part in an all-day conference, entitled a CRANIO-MAXILLOFACIAL CANCER & RECONSTRUCTION DAY. It was organised by Mr. Cheng and directed specially at Surgical Trainees, Nurses, Theatre Staff, Physiotherapists, Dieticians, Speech and Language Therapists, Social Workers, Occupational; Therapists, I.T.U. Nurses and Oral Hygienists in London. It was extremely well supported and there were also Anaesthetists, Dentists and Dental Nurses as well as Doctors, Oncologists and Restorative Dentists among the audience, some of whom also spoke of their work. As you can see, it was not a Study Day for the general public but for the complete Multi–Disciplinary Team involved in the treatment of facial cancers and diseases.

Some of the medical terminology was a little beyond the patients and several of the slides somewhat daunting but nevertheless, they gained a great deal of enjoyment from the day. It was especially rewarding for them to hear some of the Professional Team tell them how good it is to listen to the patients’ perspective of their experiences as it was not something they normally learned in their training and day-to-day work.

A lunch-time break and meal at a nearby Chinese Restaurant was the “icing on the cake” with the Study Day Team completely taking over the establishment and enjoying superb food. Great Fun.

Travelling home, members said how uplifting it was to see so many skilled and dedicated professionals working with such commitment and dedication to improve the outcome and treatment of Maxillofacial patients. It was vividly apparent just how important their work was to them and we feel both inspired and humbled.