OMFSAboutFace - Newsletter No. 5. Spring  2004

Our fifth Newsletter is one of great hope and optimism, illustrating how members of the Support Group have returned to their old life-styles and, in most cases, resumed the pleasure of familiar hobbies and pastimes. First, we have an article from Leo Cheng, director of the Support Group.

Tongue and facial transplants. Leo H H Cheng MBChB BDS FRCS FDSRCS FRCS(MaxFac)

Recently, high hopes have been generated by articles and media interest in tongue and facial transplantation. When there is significant loss of facial skin and/or mouth organs like the tongue, tissues from other parts of the body from the same patient have been the established form of reconstruction for appropriate patients after trauma or removal of cancer. The removal of tissue from one person and grafting it into another of the same species is called allotransplantation, and has created much interest and enquiry from patients. Allotransplantation requires suppression of the recipient's immune system in order to prevent transplant rejection. However suppression of a healthy immune system to increase acceptance of transplant often increases the risk of infection and further malignancies. The first human tongue transplant was reported to be successful by a group of Austrian surgeons at Vienna in July 2003. However it is important to assess the long term success in terms of oral functions (e.g. eating, swallowing, speech, articulation, etc), level of immunosuppression required, infection risk and further malignancies. A working party from the Royal College of Surgeons of England produced a report on facial transplantation in November, 2003. The report concluded: 'The working party believes that until there is further research and the prospect of better control of these complications it would be unwise to proceed with human facial transplantation.the work should take a much more incremental approach than some of the current hype surrounding it has suggested.' The same conclusion can be drawn for tongue transplantation as the procedure remains highly experimental. It is also uncertain about the ultimate risks and benefits such a transplant may bring. Other issues that need to be considered are the long term effects of immunosuppression, the psychological impact of such transplant surgery and the ethics of tongue transplantation.

Now, take a glimpse into our members' lives. We hope our stories will encourage others to feel that having cancer can add to the pleasures of life.

Dave Allen - tongue cancer

I have quite a long working day and usually get up between 5.30 and 6 a.m. After a cup of tea and a quick shower, I'm out of the house, on my bike and off to work. I've made a trailer to go on the back of the bicycle and I use this when I do the weekly shopping on Thursday evenings. I pride myself on being a bit of a handyman and have done quite a lot of DIY jobs for friends and neighbours. I also do child-minding and babysitting and, in the summer, take the children for a nice walk. Once a week I join with several friends for a game of dominoes. We play "fives and threes", and I enjoy the company and the socialising as well as the game. I have two cats of whom I'm very fond and, together with my wife Heather, really enjoy my life.

Joyce Blake - tongue cancer

Doing a full-time job for over 20 years has kept me fully occupied. Now, at last, I've retired and can get back to the hobbies I once enjoyed. I haven't forgotten them.
My hobbies started when I was very young. My poor Mum couldn't always afford to buy my socks so I had to learn to knit them. When my baby brother came along, out came my knitting again for all his baby clothes. Later on, at school, I was taught how to crochet, and this subsequently became very helpful as all the family wanted dressing-table sets and doilies. I was also asked to make lots of squares out of coloured wool so they could be sewn together for one big bed cover.
On leaving school I went into the sewing trade and made blouses among other things. Once I could master a pattern I made most of my own clothes - so much cheaper. Then it was curtains and my children's clothes. I also like painting and decorating, but I find I cannot paint and drink a cup of coffee at the same time as I end up dipping the brush in the coffee!
The real love of my life is my garden and I spend hours outside in the summer.
A few years ago I started to dabble in poetry and sent one of my poems off to a book company. They asked me for more but there was no mention of a fee! I didn't hear from them again.
Last but not least, I make bakewell tarts for weddings and funerals - sad, but true. Who knows? They may turn out better now that I can spend more time on them.

OMFSAboutFace - Newsletter No. 5. Spring 2004

Ann Johnston - jaw cancer

After an operation in June 2001 and a course of radiotherapy, my life returned almost to normal, apart from trouble with eating certain chewy things. I soon went back to playing tennis and kayaking, despite having had skin removed from my right arm to be grafted into my mouth, and I had the energy to go for my usual strenuous walking holidays in the Alps in July 2002 and again in June 2003. The best flowers as well as the best views are high up, which often means climbing 3,000 feet before lunch - and coming back down again is very hard on the old knees! But the gentians and the clear air are well worth the effort.
Unfortunately, the cancer returned, so instead of walking in the Pyrenees in August as I planned, I was back in hospital. This time I had to have the whole right side of my lower jaw removed because the cancer had spread through the bone. The problem then is to find suitable bone and tissue to put in its place. One solution is to use the fibula from the leg, but luckily for me as a keen walker, my circulation turned out to be too sluggish. Instead, Mr Cheng and Mr Hutchison were able to use bone from my right shoulderblade, which meant cutting a lot of muscles. The operation was complicated and lasted 16 hours; afterwards I was kept sedated in intensive care for another three days, and - not surprisingly - I was pretty feeble for a week, but after a total stay in Barts of only three weeks, I was able to go home.
Before I left Barts I asked the physio whether it would be all right for me to ride a bike, since that is how I usually get around town. She was surprised but gave me the go-ahead, so I tried the day after I got home and next day pedalled triumphantly over to the surgery to have a dressing checked. The nurse laughed when I told her I had cycled, and said "That's Cambridge for you. People say 'I had a major operation three weeks ago - but I can ride my bike' or 'I'm nearly 90 - but I can still ride my bike!'" So that was a major step on the way back to normal life and very good for my morale.
Because of the surgery to my shoulder I'll need to work hard at my exercises to get back the full use of my right arm, but I'm determined to kayak and play tennis by next summer. I thought longingly of the river on those balmy days we had last autumn, but I knew I'd just paddle in circles if one arm was weaker than the other. In the meantime I have enjoyed going for long walks with friends most weekends, very thankful that the surgeons could not use bone from my legs. East Anglia does not offer much in the way of hills, but you can find some good views, and I need to keep in shape so as to be ready for the Alps next June.

Marlene Gaunt - tongue cancer

I wish I could say that I had now returned to "lion-taming, bare-back riding and fire-eating" but, alas, all my pursuits are sedentary and rather dull. Getting back to singing was my main concern, and it was remarkable how quickly I was able to return to my ladies' choir. My solo voice is not of the same quality it once was, but I'm still invited to perform with a local barbershop group and I share duets with another soprano in its associate Concert Party.
When my husband died 17 years ago I learned to drive and now gain a great deal of joy from the independence this has given me. I also run a "shuttle service" for friends who need transport and I'm pleased to be able to help.
Looking after the house and garden doesn't leave much spare time, but I love reading and crossword puzzles, and I enjoy the costume dramas and classic serials on TV. In this area there is a superb acting company who stage outdoor theatre productions of Shakespeare in the summer. It's a bit like a poor man's Glyndebourne as you can picnic by the river in the grounds of the beautiful country manor house and then watch the play on a stage set before the ruins of an old abbey. In the winter, the company presents indoor productions of plays such as Dylan Thomas' "Under Milkwood" and Alan Bennett's "Talking Heads".
All this and the quality time I spend with my family and friends adds up to a rich and enjoyable life for which I am very grateful.

OMFSAboutFace - Newsletter No. 5. Spring 2004

Mavis Elmer - tongue cancer

The news that my cancer had returned was given to me in February 2003 and I decided then to make "the best of a bad job" and do what I was able to for as long as possible. As another member of the group has said, what matters isn't the timespan of years ahead, but feeling well and able to do the everyday things like household chores and gardening while the time is left.
Fortunately, I have a small but very close family who give me a great deal of support, and also some very true friends. I have two grandchildren, Kayleigh and Harry, who was born in March this year, so I was able to attend his christening in June.
On a beautiful sunny afternoon in August, a family friend piloted me in his small aircraft over my bungalow and surrounding villages. It's something I've always wanted to do and the experience was wonderful. A family holiday in Wales, trips to the seaside and the zoo, child-minding when necessary, coach trips to Norwich, Bury St Edmunds and King's Lynn have all been greatly enjoyed. Now I am looking forward to my annual visit to Thursford Christmas spectacular, together with Christmas in the company of my family and the grandchildren I adore.
Lastly, but very importantly, I should like to pay a great tribute to the Support Group. They have been a great comfort to me and have helped me more than they know.

Jean Haslop - tongue cancer

I love writing and reading. I have lots of American penfriends, all of whom I've now met, and I've been corresponding with one of them since I was sixteen, in 1947. We have been through a lot together. I have several English penfriends, too.
I try to get to the theatre or cinema at least once a week, and I also frequent the Cambridge Corn Exchange - it's a rock venue, but they also put on lots of other things, such as ballet, light opera, symphony concerts, Christmas productions and Paul McKenna's Hypnotic Show. I really enjoy them. For more serious plays, I go to the Cambridge Arts Theatre. I watch quite a lot of TV and read a lot. At the moment I'm reading one of Alan Titchmarsh's novels (he's a gardener turned novelist).
I used to do a lot of knitting but do less now as the grandchildren aren't so keen on Grandma's handknitted jumpers and prefer a shop-made sweatshirt or a fleece. Neither can I knit quite so fast these days as my fingers are not so nimble.
At present I'm beginning to think about making my own children's and teenage birthday cards out of all the trial CDs that keep dropping through the letterbox. I need to get together a few more bits and pieces before I can make a start.
Lastly, I do as many crossword puzzles as I can, just to keep the old brain going.

Frank Osborn - tongue cancer

After the discovery of my cancer and subsequent treatment I decided that I should make an effort to lead as full a life as possible. I realise that everybody's interests and life-styles are different, but I do feel that trying to make the most of life helps to keep a healthy mind and body. I try not to have a set routine as I know I would find this boring, so as long as I have enjoyed some time pursuing my hobbies, I am quite content. My two main interests are painting (using all types of medium: watercolour to pastel and oil) and playing golf. My favourite pastime is the one that is going the best at the time. Both interests allow me to meet and socialise with like-minded people. Although my abilities in these pastimes are about average, I have learned that just being able to pursue them again is the greatest reward. There are many outlets for these hobbies in this area, and most local colleges and golf courses offer a variety of training. So who knows, perhaps I will meet some fellow patients of Mr Cheng's on the local golf course or at the local art centre!

OMFSAboutFace - Newsletter No. 5. Spring 2004

Finally, to end this Newsletter edition we have another article by our own Leo Cheng

The benefits of the About Face Patients & Carers Support Group website
The surgeon's perception
Leo H H Cheng MBChB BDS FRCS FDSRCS FRCS(MaxFac)

Over the last 3 years, About Face Patients' and Carers' Support Group and its website have gone from strength to strength. Many patients and carers both within the United Kingdom and abroad as far as Australia, Africa and American, have contacted the website master and myself. Many have expressed the encouragement and valuable information that they gained through the website.
As a Consultant Maxillofacial Surgeon, I have found the Support Group and its website allows one-to-one support to individual patients and carers provided by members of the Support Group. The support varies from sending a card/email or having a chat on the phone to visiting at home or in hospital. Whenever I see a patient with oro-facial cancer or trauma, I give both the patient and his/her carers credit-card sized cards about our Support Group's website. This is the most non-intrusive way of providing information and support to anxious patients and their loved ones after breaking bad news. Some patients feel unable to contact the Support Group immediately due to what the English call a 'stiff upper lip'. However when the bad news has sunk in, patients and carers can access information on the website 24 hours a day without the feeling of being intrusive or disturbing the peace of other patients.

The case studies in the Support Page of the website have been an important part of the Support Group as the patient's own perception and first-person's account of the treatment provides invaluable information and tremendous encouragement to patients who are waiting for unpleasant treatment.

General medical and dental practitioners have also found the patient information pages helpful by printing the relevant pages for patients and carers in their consultation rooms. Some have also found the patient information and case studies very useful as they form part of their continuing medical education.

For those patients and carers who would like to donate money to the Support Group, the money will go directly to the Facial Surgery Research Foundation - Saving Faces headed by Mr Iain Hutchison, for research and the setting of a Clinical Trial Centre for Facial Surgery.