Oral & Maxillofacial Surgery

Support Group - Case Study - Ann Johnston

I never expected to have cancer - I had never smoked and led a healthy life - so I was stunned to discover that I had a tumour in my jaw, following the extraction of an impacted wisdom tooth at Addenbrooke's in April 2001. Originally I'd been mildly concerned about a swollen gum, and I'd had toothache only once.
It was sheer bad luck to get the cancer, but in every other way I was incredibly fortunate - that the cancer was found and that I liked and trusted Mr Cheng and the whole team from the outset. They encouraged me to go on holiday before the operation, so I had a blissful week in the French Alps, climbing 1000m most days, and returned well prepared both physically and psychologically for a summer of surgery and radiotherapy. In a long operation on June 1, the surgeons removed several molars and part of my lower right jaw, as well as the lymph glands in my neck, in case the cancer had spread. They then plumbed in tissue and an artery taken from my right arm to patch and replace what had been removed. You would never guess now that my lip, chin and jaw had been cut open because my face is unscarred and I have full movement of my mouth and lips.
I left Addenbrooke's after only 11 days of superb care, feeling extraordinarily well. I then had five weeks to enjoy my convalescence, being indulged by friends, before undergoing 33 sessions of radiotherapy. It turned out that the cancer had reached the lymph glands in my neck, and although these had been removed, a high dose of radiotherapy was needed to ensure that any remaining malignant cells were destroyed.

Radiotherapy is much less unpleasant than it once was, and far less devastating than most chemotherapy, but it's still not much fun. Patients tend to suffer from mouth ulcers, a sore throat, burns on their skin and tiredness. Eating becomes a struggle rather than a pleasure, yet you should aim to take in 500 extra calories per day. Despite all of this, and sustained by homemade banana milkshakes, I was able to cycle the 7-mile round trip from home to Addenbrooke's right to the end of the daily treatments, clocking up over 200 miles. I was able to do some work (as a freelance translator) and even kayaked to Grantchester several times during the treatment. Still, I was glad when it was all over. The nasty side-effects wore off quite quickly, and a week in Paris in late September did wonders for my recovery, especially what I was able to eat.
Looking back on Summer 2001 I feel that, although I would obviously prefer not to have had cancer, it has been a strangely enriching experience. For a fit person, it is humbling suddenly to be looked after by so many highly trained surgeons, doctors, nurses and other healthcare professionals. It wasn't difficult to maintain a positive attitude because I couldn't have asked for better care and my friends have been fantastically supportive in all sorts of ways. I hope I can now help others who have to travel the same road.

Coping with Recurrence

For me, until three years ago, cancer was in the same category as dogs - something that other people had and that I never expected to have myself. Then I discovered that I had a tumour in my jaw, which meant a major operation in June 2001 followed by six weeks of radiotherapy. I made a very good recovery and was soon pretty much back to normal except that there were a few things I found troublesome to eat because I could only chew on one side of my mouth. My speech was not affected and (thanks to the skill of the surgeons) nobody would have known that anything had been done to my face. I felt perfectly well, so it was easy to put it all behind me and get on with life, almost as if nothing had happened.

I say "almost" because I knew that the cancer could come back at some stage, so when friends asked how I was, I tended to give the cautious reply: "Fine, as far as anyone knows." I think it helps to be mentally prepared, but it was still a shock that the disease returned so quickly - as it did, in spite of the surgery and radiotherapy. Luckily for me, Mr Cheng and Mr Hutchison thought it was worth undertaking the long and complex operation to remove the tumour and the diseased bone and to rebuild part of my jaw with a piece of my right shoulderblade. I was warned that afterwards my appearance would be altered, and that I would have greater difficulty in eating and speaking, but the alternative was to die in a matter of months and I didn't feel ready to die just yet.

For me, it was surprisingly easy to cope with the run-up to the operation and convalescence afterwards - maybe the endorphins come to the rescue. Also, I was physically fit and I wasn't having to deal with other health problems at the same time. Oddly enough, it helps to feel that there's not much I could have done to prevent the disease - if I had smoked, been a heavy drinker, neglected my teeth, I would have really kicked myself.
Obviously it makes a huge difference to like and trust the surgeons and all the other health care professionals who are looking after you. Part of that is indefinable - whether or not you "click" as human beings. Fortunately for me, we did, because I cannot imagine allowing a surgeon I didn't trust anywhere near me, especially my face! In practical terms, I have been impressed by the way so many doctors now spend so much time and effort on listening and explaining. I realise some patients prefer not to know too much, whereas I find it easier to have some sense of what needs to be done and why.
Another incalculable factor is the support of family and friends. Again, I have been very lucky because my friends have been marvellous, not just when I was in hospital but all the way through. I'd like to share one practical idea. Because I have friends scattered around the world, e-mail has been a great blessing because a message can be sent to dozens of people at the press of a button. You don't even have to have a computer - some friends picked up messages at their local library - and it looks as if e-mail (or something like it) will soon become as standard as conventional mail. I got the idea from a friend in Cambridge who eventually died from a very nasty type of leukaemia. Through all the treatments, she or a close friend kept us all informed with e-mail bulletins, so that we didn't agonise over whether or not to phone her home or the hospital and ask for news. I did something similar and, to judge from the feedback I've had, it has been a great success. For one thing, it takes the pressure off carers (and the hospital), who don't have to keep answering the same questions. It's a quick way of letting people know whether visitors or phonecalls are welcome or not, and of reassuring them that all's well. Many friends have told me that they feel that sharing my experience would help them cope if their turn came one day.

Of course, too, I have had the benefit of the Patient Support Group, which unfortunately didn't exist at the time of my first operation. There is a special bond amongst those who have been through similar experiences, and I'm sure outsiders are struck by the real warmth when we meet up at a clinic or occasions like today's. It's immensely reassuring to talk about common difficulties and see how others are coping. When I was in hospital and during my convalescence, I particularly appreciated the cards and notes from other members of the Group, especially as I knew that some of them were not in the best of health themselves.
In Britain it seems to me that such groups are all the more desirable because people are reserved: as I know from radiotherapy, you can see the same people every day in the waiting room for weeks and yet it's rare that anyone speaks. I'd be interested to know what the official position is about confidentiality, which can be a problem, as I found out on a couple of occasions. I had talked to fellow-patients on the phone and promised to seek them out for an encouraging word, face-to-face, but failed to ask what they looked like. At Outpatients, even when I explained about the Support Group and said I'd already talked to the person, the receptionists apparently were not allowed to point them out. I can understand the need to protect patients from unwelcome intrusions and I wonder what is the best way to handle this issue.

Finally, a word about "brave faces". For me, so far, it has been a matter of common sense rather than courage: either you decide it's all hopeless and give up, or you get on and make the most of life. My parents brought me up with the sensible attitude that weeping and wailing won't make things any better but will only make them worse - use your energies to get on with life as it is rather than as it might have been. I am very conscious that I have a lot of support and I have none of the problems that really do take courage, like living with pain, or with major impairments that affect your mobility and your everyday life. That said, I must admit that it is much harder to be as optimistic about the future as I was after the first operation. I find I am living in two dimensions all the time, thinking in terms of having another 20 months or another 20 years ahead of me. For all practical purposes, I have no family, so I know that I must rely on my friends to deal with my possessions when I die and the least I can do is to leave everything as shipshape as possible. At the moment these concerns are uppermost in my mind and I'm reluctant to make longer term plans. On the plus side, I'm really savouring the things I enjoy, like the coming of spring. I don't know what shape I'll be in next spring, so I'm making the most of this one.