OMFSAboutFace - Newsletter No. 3. Summer  2002

You would be forgiven for thinking that you had trespassed into the world of gastronomy and that Delia Smith and Margeurite Patten were co-editing this edition, but no, this really is the Aboutface Support Group presenting our third Newsletter and this time, sharing our thoughts on the eating problems that we all faced after our surgery for mouth cancer. As our consultations grow fewer we obviously see less of each other but we are still very aware of how much we owe to the surgical and medical teams at the hospitals where we were treated. Nevertheless, memories of our first excursions into "proper" eating still remain with us and might even be recalled as our most embarrassing moments. We didn't quite have to resort to high chairs and bibs, but we were only a few small steps away!
For the first part of our stay in hospital we were all fed intravenously and it was only towards the end of our treatment that we were introduced to more solid food. We are pleased to say that the coughing, gagging and spluttering has, in the main, now vanished and most of us have made such good progress that we are brave enough to eat out in public. Those of us who underwent post-operative radiotherapy faced the severest problems and indeed, one poor lady still does. Bearing this in mind, another member has kindly submitted a few helpful and nourishing recipes. We feel sure that visitors to our Website, as well as patients, will be trying them out.

Before we let you loose on the various articles and recipes donated by our members, we have received tremendous encouragement and support from none other than Sir Bobby Robson, former Footballer, England Team Manager and currently Newcastle United Manager. Sir Bobby writes: "The work you are doing via your website and Newsletter is certainly of tremendous value and benefit in terms of raising awareness about oral cancer and I extend my heartiest congratulations for this. I am delighted to support the work of omfsaboutface aims to raise awareness and provide information about oral cancer. Having recovered myself from oral cancer, the importance of spreading the word on the disease cannot be over emphasised. I wish all those behind the Newsletter and associate Website all the very best of luck in the future".
We thank Sir Bobby for his positive words and send him our own best wishes for continued good health, good luck and happiness in both his professional and personal life.

Ann Johnston
You never appreciate something until you lose it

"You never appreciate something until you lose it" - that certainly applies to eating, as anyone who has had radiotherapy involving the mouth knows only to well. Gone for ever are those years where I simply stuffed food into my mouth without wondering if I could chew and swallow it, though in fact I can eat almost anything now, a year after surgery and ten months after the end of radioptherapy. I've become a more dainty eater, avoiding pizzas, chewy meat, thick sandwiches and the like, but I was surprised to find salads remarkably hard to process now that I have fewer teeth.

The hardest time for me was towards the end ot the radiotherapy, when you need to take in lots of extra calories and yet you don't feel much like eating, especially if you have little or no sense of taste

(See some of Anns tasty recipes in various parts of this newsletter)

Frank Osborn

It is now fifteen months (when written) since I had my operation followed by radiotherapy treatment. At first I found it really difficult to chew and I really could only manage food which was minced up or put through a blender. This lasted for about four weeks and then gradually I found the soreness was easing and by eight weeks I was back to managing more normal food. My taste, even to date, has not returned fully and my tongue is still quite sensitive in the area of the operation, Chewing is still a problem at times and I always look for meals that have plenty of gravy or sauces to help with chewing. I also find that highly flavoured food is easier to manage than meals that are rather bland.
Improvements in my eating abilities have occured almost without me realising it. It was only recently that I found that I could eat a packet of crisps without too much discomfort. I hope that this brief insight into my condition is of some help to our readers. Everyones situation is different and special to that individual but sometimes it is helpful to have a yardstick by which to measure your own progress.

OMFSAboutFace - Newsletter No. 3. Summer 2002

Joyce Blake

When I first moved on from liquid food my initial attempt to eat naturally was to try out just soft things, but even these took me ages to eat. I still have to eat everything very slowly, because not only have I lost some of my taste for food, but there are sometimes when I don't even feel that it's in my mouth. Anything small, like rice I find very difficult to locate, especially if it's under my tongue, so I have to rinse my mouth out to get rid of it.
I still can't eat anything that's hot. If it burns the good side of my tongue I know that I have to let it cool down!
Sharp things like crisps or nuts are impossible and I no longer chew gum. Even biting into an apple is hard work so I don't bother with them now.

Joyce works at the United States Airforce base at Feltwell, Suffolk and they have included her story in their internal Newsletters, also mentioning the money that she raised for the Maxillofacial Unit at Addenbrookes when she held a Yard Sale. Joyce is hoping to hold another one sometime in the future.
Another point that Joyce has raised before is about her speech which is ok until she gets tired and it then becomes slurred. We would be interested to hear from any of our readers who have had similar operations and are suffering with their speech the same way as Joyce

David Williams -- Will I ever eat lettuce again?

"Could you do a little piece for the newsletter on eating problems after my tongue cancer surgery?" asked Marlene Gaunt. "What eating problems?" I thought. Then I remembered! I had surgery in January of 2000 so I have had (when this was written) eighteen months to get things under control.

The first few days in hospital after surgery were undoubtedly rough on the food front, even with the excellent care that I had from the nursing and other hospital staff. The only thing that I could face and make some semblance of was porridge. I liked porridge then, I also found it very difficult to eat in front of somebody. Learning to eat and speak again, and being sociable all at the same time is a stretch. Katy, my wife, and I quickly worked out that she should make herself scarce if she was visiting and the food arrived.

Coming home saw some return to normality. I found it easier to eat food that came in chunks that I could more easily move around in my mouth. Baby food was not on the menu. Lettuce and other leaves were almost impossible, but you can always have a salad sandwich. It was (and still is) essential to be careful about the temperature of the food - not too hot. Burning the tip of your less than sensitive, already sore tongue is not good. Also don't eat things straight out of the fridge, you are unlikely to be using all of your teeth, too many cold things will put the teeth that matter on edge for days. Work on eating with people and enjoying the social occasion that shared food is. Drink lots of water.

After a time you will recognise that eating becomes a real pleasure for a couple of reasons: The work that your tongue does when you chew food excercises it and makes it much easier to speak clearly. The food also seems to lubricate and sooth that sore tongue. Grapes, chunks of cucumber and fingers of mild Capsicum peppers make great snacks. Diabetic fruit gums lubricate and excecise the mouth without adding to the waist line. Another excellent thing for keeping your mouth in trim and soothed is to use peppermint free Weleda Calendula Toothpaste, brushing after returning from a hard day at work really makes the difference.

Things are largely back to normal now, eating out is a pleasure again, both socially and for business and a curry with the family is back on the menu. I can face porridge again after a year without it. I can also now eat lettuce-- if I must!

Recipe -- Soothing Banana Malted Milk

In a blender, mix two heaped teaspoons of Horlicks (not the instant kind) with a little hot water, add a soft ripe banana chopped roughly, a good dollop of vanilla icecream and some full milk (the amount of milk depends on how thick you want the milkshake to be). Whip together and serve. It can be sipped through a wide straw if not too thick.

OMFSAboutFace - Newsletter No. 3. Summer 2002

Jean Heslop

(Jean also had radiotherapy).. For breakfast I find most cereals, with the exception of meusli, are acceptable. For dinner most meat is ok if stewed or roasted but I still find grilled meat practically impossible. I cannot think of any vegetables that I cannot manage. I haven't tried rice yet but I do add pearl barley to my stews and that seems to be fine. I have tried bananas and satsumas in the fruit line and they too are fine. At teatime I find difficulty with salad items, lettuce in particular seems to stick in my throat. Peppers, cucumber, and raw carrots I cut into sticks rather than slices and they are then acceptable and so are cherry tomatoes cut in half. I add wafer thin chicken sometimes, also coleslaw, cottage cheese or grated cheese. I can drink tea, coffee, cappuccino although sometimes they seem too sweet, sometimes not sweet enough so I now use sweeteners. I still like my biscuits "dunked!"

Dave Allen

I had great trouble eating solids after my operation and had to take everything liquidised. I didn't enjoy anything much as things didn't seem to have any taste. For a while I was also biting my tongue. If I tried eating peanuts, crisps and minced meat I found that remnants would get under my tongue and become very uncomfortable and irritating, especially when I had to use my little finger to retrieve pieces that had become lodged. The extraction of seven or eight teeth during my operation also made things worse. I also found that I dribbled, particularly on the right hand side of my mouth. Unfortunately, this seems to have persisted.

Mavis Elmer

Half of my tongue was removed in October 2001 and since then I have been totally unable to eat "solids" as my mouth and tongue are still very tender.
During my operation several teeth were extracted and I now find my dentures a big problem. I manage at home quite well and am able to maintain my weight with various supplements.
When I go to friends for meals I take my liqudiser with me and laughingly compare this with taking the baby out with feeding bottles etc.!! the biggest problem is not being able to go on holiday or visit restaurants as I once did and which I really enjoyed. Hopefully I shall be able to resume these pleasures one day soon.

Marlene Gaunt

The days when I tackled my food with zest and cheerful abandon have now disappeared. I have now to behave in a far more ladylike and sedate fashion. When I was first discharged from hospital my sister was there to nurse me back to health and carefully liquidised my food, on reflection, perhaps longer than she should. I was really indulged and spoilt. it was only when I was told at the hospital that most other patients were already eating solids that my pride was challenged and I vowed, "Right, if they can, so can I!" Starting with a thin slice of bread and butter, creamed potatoes and steamed fish I have made remarkedly good progress and can now eat pretty well everything, albeit far more slowly. I also have to put less into my mouth and allow it to cool down. Neither do I try to talk while I'm eating unless I want to make a coughing spluttering fool of myself. So at last I'm adhering to my mother's admonishment of "Don't talk while your mouth is full."
Eating out at public functions is still rather embarrassing as when they are finished I am still plodding on. When I finally lay down my knife and fork I almost expect a round of applause and a burst of cheers!
Having fewer teeth probably hampers me as much as my re-constructed tongue but I am really very lucky as I can eat most things, even my favourite brazils and cobnuts. No longer can I take a large bite into a juicy apple, it has to be quartered, although I still keep the skin on. The biggest problem is salad and particularly lettuce. The first munch is "magic" but as the leaf becomes more fragile I haven't a clue where it is in my mouth!
My taste buds are not as keen as they once were, neither is my sense of smell. There have been a few burnt cakes and scones in the kitchen in the last few months. No one is allowed to attribute this to the ageing process unless they want to be banned from my Friendship Club!!

OMFSAboutFace - Newsletter No. 3. Summer 2002

Tongue Cancer

An article by Mr Leo H H Cheng Consultant Oral and Maxillofacial Surgeon and Support Group Advisor

Cancer of the tongue is one of the common cancers diagnosed and treated by Oral and Maxillofacial Surgeons. There is an increase in all mouth cancers in the western world but in particularly, there is an increase in tongue cancer among young women especially those below 50 years of age. The true causes of tongue cancer are not fully known but smoking and heavy alcohol intake have been shown to be major risk factors.
However this alone cannot explain why some young people especially some young women who develop tongue cancer when they have not been exposed to these risk factors. The other explanation may come from the genes which make some people more susceptible to the development of tongue cancer. The Genome 2000 project and many high powered research projects in human genes and cancer have shown a very complex system in each of our cells. Certain faulty steps in the system are required to change a normal cell into cancerous cells. Depending on the size, site and aggressiveness of the tongue cancer, lymph nodes in the neck may be involved in the spread of cancer.
The tongue is an important mouth organ because our mouth contributes to many of our life-sustaining and social functions. Speech, swallowing, chewing and sense of taste may be affected by the cancer and its treatment. Surgery and radiotherapy are the main lines of treatment for tongue cancer. Your Oral and Maxillofacial Surgeon will be supported by a multidisciplinary team to formulate the most appropriate treatment plan which is tailor-made to each individual.
The good news is that there has been some improvement in survival and better local and neck control of cancer development over the last 20 years. Early detection of tongue cancer is crucial for higher cure rate and better functional restoration after treatment. The important take home message is 'Any suspicious lesions (patch, ulcer or swelling) of tongue, face, mouth, jaw, head and neck which have not healed within three weeks should be seen by an Oral and Maxillofacial Surgeon. Early diagnosis and prompt management of small cancers is of vital importance to ensure a good survival rate and functional outcome. There is more information in our About Face patients' and carers' support group website, www.omfsaboutface.org.uk.

Mr Leo H H Cheng
Consultant Oral & Maxillofacial Surgeon
Clinic 8, Box 47, Addenbrooke's Hospital
Cambridge, UK CB2 2QQ

Recipe -- Cream of courgette and blue cheese soup

This variation on celery and Stilton soup can be eaten warm or chilled. I invented this when all of my friends who grow courgettes were keen to give them away!
The basic ingredients are courgettes or marrow (peeled if necessary, chopped roughly and either steamed in stock or fried gently in butter or oil), nutritious stock and/or milk, and grated blue cheese. Cook the courgettes until soft, add the blue cheese while the soup is hot so that it melts inthe liquid. Blend. Serve warm or chilled with a dollop of creme fraiche or a whirl of cream for extra calories.

Recipe -- Poached smoked fish

Smoked cod or haddock fillets poached in a little milk and served with creamy mashed potatoes turned out to be an easy main dish to eat, with more taste than any meat I could manage. Much more satisfying than scrambled eggs

For up to the minute details on Fund Raising and news on Cancer Research please see our website. have a happy and enjoyable Summer. Our next newsletter is due in Autumn of this year