Paul's Story
Mouth Tongue and Teeth - a personal account
You would probably not be reading this if you or someone you know did not have a mouth problem. (I don't just mean talking too much - that is a common condition). I was asked to write this in case my experiences might be of some help to others. Of course no two experiences will be the same, but they may be similar. Here briefly, is what happened to me.
It began in 1997 when I was 59. I live in Yorkshire, England, and I had tongue cancer. This was treated by surgery and radiation. I think I am now cured.
Getting Cancer
This is not difficult. Almost anyone can do it, especially if they smoke. In my case it started as a sore spot on the tongue. I assumed I had bitten it, and it would clear up in a day or two. It didn't. My doctor examined it from the safe distance of about two feet, and thought it was nothing to worry about but sent me for blood tests anyway (he had a theory). The tests revealed nothing much. Fortunately I had a routine dental appointment. My dentist was not very worried, but referred me to St. Luke's Maxillofacial Unit in Bradford, where it was rapidly diagnosed as cancer, not very far advanced. Lesson: If anyone has a mouth problem they should consult their dentist as well as their doctor. Some doctors have little idea about what goes on inside peoples' mouths.
None of this hurt. Diagnosis required nipping off a tiny bit of tongue with a small instrument and sending it to be examined under a microscope. It didn't hurt and healed up in no time. The worst thing at this time was the uncertainty. Would I be declared incurable? Would the cancer spread? It seems that there is a likelihood that such a cancer, if left unattended, might spread to somewhere above the shoulders. But it's unlikely to reach the nether regions. So you can relax about that. An inconvenience was the frequent requirement to travel to the hospital, sit in waiting rooms, wait for prescriptions and so on. I seldom had to wait very long, but I've always hated that kind of thing.
Treating Cancer - Surgery
There are various ways of treating cancer depending on where it is, what type, and so on. After extensive consultations at the specialist cancer hospital in Cookridge, Leeds, it was recommended that the best way to tackle this one was to remove the tumor surgically, maybe followed by some radiation treatment. Rather reluctantly, I went along with this because they had been so thorough and seemed to know what they were talking about. If you have a small tumor on your tongue you can't just remove the bad bit. Everything directly below that down to the tip has to go as well (something to do with blood supply). So I ended up having most of the right side of my tongue taken out. The thought of this being done to you is horrendous, and I would not recommend it as a recreational activity. But it wasn't nearly as awful as I had feared. First, it is done under a general anesthetic. Second, surgery has progressed well beyond the days of butchers' knives. For this sort of thing they use lasers. One benefit is that the wound won't bleed much and should not need stitching. Did it bleed? Yes a bit. I had to keep rinsing my mouth from time to time, but only for a couple of days. Did it hurt? Yes, but much less than you'd imagine. I used painkillers for about a week, but could have managed in some discomfort without them. Was there anything good about this experience? Well, my two days in hospital were comfortable, the nursing and medical staff pleasant and competent. But it wasn't like being on holiday.
And the bad things? At first my tongue was
bruised and swollen and I felt I had no control over it.
When I thought it was pointing straight ahead, I would find
it was lying sideways between my teeth and likely to get
bitten. For a time I couldn't move it about very far or
very accurately. I had to eat soft, mashed or liquefied
food for a while. It is remarkable how quickly I (and what
was left of my tongue) adjusted. My speech, indistinct and
slurry at first, quickly recovered to the point that I was
able to hold telephone conversations three days after the
operation without much trouble.
Do you still smoke? Not on your life (or mine, to be precise).
I love smoking and envy my wife the comfort of lighting
up whenever she feels like it. I have frequently quit in
the past - three months was the record - but this time it
has been for good. There's nothing like sheer terror to
make the impossible seem achievable.
Treating Cancer - Radiation
My small tumor might have scattered cancer cells beyond
the bit of tongue that had been removed. It was thought
wise to stamp these out before they caused further trouble.
The answer was radiation. This means beaming strong doses
of X-rays at the affected part for a minute or two at a
time over an extended period - in my case a month. This
is much, much more than is involved in a routine hospital
X-ray. Aiming the Rays: It is important that the rays reach
the parts they are intended to reach and as few others as
possible. (The military phrase is limiting collateral damage.)
With the mouth this can be difficult as there are so many
complicated and delicate bits and pieces in the area that
a misdirected beam could cause quite a lot of harm.
The answer lies in keeping the patient's head still and in the same place each time. This is done by making a Perspex facemask that fits the head precisely. It looks a bit like the headpiece of a transparent suit of armor. With this, his or her head can be kept immobile on the treatment bench. The exact direction of radiation beams and settings for the machine can then be established. None of this is painful or unpleasant. Just a bit tedious. Before I could be treated, I had to have a number of teeth removed. Once treatment began, I had to attend the hospital every day (except weekends) for four weeks. The machine used looked a bit like those large mechanical robots that they use to assemble cars. It had a flexible head so it could be positioned in just the right place.
After I was fastened to the bench with the mask, the machine was positioned and I got a minute or two of radiation from two different angles. Each session took about fifteen minutes. More time is spent positioning than radiating. You don't feel a thing. Having your head held still can be a bit uncomfortable but it doesn't last long. Radiation kills cells. The idea is to kill cancer cells. But it also kills normal cells. The gamble is that cancer cells, being abnormal will not recover, but normal healthy cells will manage to re-establish themselves, more or less.
It was two weeks into the treatment before its effects became evident. Though you don't feel radiation while it is happening, I gradually began to get a very sore mouth. My beard started to fall out.
The nursing care and support during this period was of the highest quality and included emergency phone numbers that could be used to get help or advice. From the very beginning of my treatment my wife was able to attend all consultations and join in discussions, even once watching the radiotherapy. This enabled her to support me far more effectively than if she'd been kept partly in the dark, as sometimes happens. I was given cream for the parts of my face that became inflamed as a result of these death rays, and increasingly strong painkillers for my mouth. The last week of the treatment was no fun at all. The skin on my face and neck most exposed to the radiation more or less gave up and started to weep. My face exuded a not very pleasant fluid and required special dressings that made me look like the Creature from the Swamp for a short while. I kept indoors so as not to frighten children or animals. But it cleared up pretty quickly once the radiation ceased. However, the worst aspect of the whole business was the teeth.
Teeth
I'm told that teeth and radiation don't mix. Because radiation
weakens the parts it affects, any lurking infection in teeth
could spread to the jawbone (also weakened) and lead to
huge problems. The Consultant Radiologist insisted that
all my lower teeth and a couple of upper ones be removed
so that the rays could be directed to where they were needed
without hitting teeth, and from angles that would avoid
damaging the left salivary gland.
Tooth extraction is routine. Thousands of teeth are taken
out every day. Under a local anesthetic it doesn't normally
hurt, though there might be some unpleasant cracking noises.
I have particularly tenacious teeth. Some of mine that are
supposed to have two roots have three, for instance. So
more than usual time and effort were needed to remove them
(short of using gelignite). But for anyone with normal teeth,
having some taken out should not be a big problem.
The real problem
Without a lower set of teeth you can't crunch your way through toast, apples and many other kinds of food. If in addition gums, lips or tongue have been made fragile by radiation, the problem may remain for quite a long time. Eating soups, liquefied meals, yogurt, mashed avocado and so on, however delicious, begins to pall after a while.
I'm told that upper dentures are seldom much of a problem. Lower dentures should ideally be anchored to something solid to stop them sliding around. A remaining tooth or two is ideal; otherwise metal implants can be inserted in the jaw as anchor points. The false teeth clip onto these. In my case I had no lower teeth and a possibly radiation-damaged jawbone that might not support the implants. So finally after two years, as my mouth became less fragile, I was issued with a lower set of teeth held in place by a superglue-like adhesive and will power. The teeth were a minor cosmetic improvement, but for eating they were less useful and were apt to come loose halfway through a meal. Not good in polite company, or on a first date. I never quite mastered the art (if there is one) of using them. I sometimes preferred to take them out before (rather than during) a meal. I persevered for about a year with the damned things, experimenting with different adhesives and chewing strategies. Sometimes I'd manage a normal meat and vegetable meal without anything coming adrift. But mostly they came loose. They were also a pain in the proverbial to keep clean, sterilize and store. Finally, as my gums toughened up and I found I could make a pretty good job of mastication with gums tongue and remaining top teeth, I gave the denture up as a bad job. My speech, none too bad to begin with, is somewhat better without them. I think my appearance is OK; I don't look too sunken-faced. The teeth sit resentfully in my sock drawer.
Aftermath
I've had a few other problems worth mentioning. Right at the end of the radiation when my face and mouth were at their worst, I got severe itchy bumps on my chest and back. This was put down to an allergy to morphine which was then discontinued. The bumps cleared up. But for a couple of months I suffered from dry itchy skin in various places (but not my face), and used up tubs of soothing ointment before it went away.
I can only assume that this skin trouble was an indirect result of the treatment. The medics didn't seem sure what to make of it. Maybe it's not in the textbooks, or outside their specialties. I suspect that unexpected side effects are not uncommon in many illnesses. People shouldn't be scared to ask the doctors questions or be fobbed off with vague answers.
Parts of my mouth remained tender, damaged by radiation, for a long time. This is one reason it took so long to get false teeth. Dentures are likely to rub against the tender bits and make them sore. But the tenderness has receded to a point where I can cope even without false teeth. At one point when I was still using the denture, the most irradiated bit of lower gum split, exposing the jawbone (only just). My consultant had a look, and with a pair of tweezers snapped off a small piece of bone that had gone necrotic (medical-speak for "dead") because of the radiation. It didn't hurt and the gum closed up immediately.
Things keep improving, but slowly. I try to follow the Dog-Latin
tag, attributed to Asclepius the Greek and Roman god of medicine,
Nolle illegitimati carborundum (Don't let the bastards grind
you down). I still need to keep my lower lip and other heavily
irradiated parts out of the sun to which they are unduly sensitive.
So I use sun-block cream on the lip and wear a floppy hat
in the summer. This makes me look like an Australian cricketer
on holiday. Local folk regard me as harmless.
My beard (my pride and joy for nearly thirty years) has grown
back as normal on the parts that got fewest death-rays. On
the bits that got heavy doses, recovery can only be described
as patchy. So I still have to shave unless I want to go about
looking as though I have mange. I used to get a dry mouth
at night because of damage to salivary glands. It didn't occur
in the daytime. But I now no longer need to keep water at
the bedside. Another sign of slow but steady improvement.
Stop the press
I've been getting so that I don't regard myself as disabled in any way! My reluctance to eat in restaurants has been forgotten. I've become quite cavalier about munching (or gumming) my way through most foods as though I were fully equipped. A sharp reminder otherwise came in July 2001. The day after demolishing some rather tough bread rolls I noticed a small sharp something poking through my lower gum. It is not uncommon for splinters of tooth to appear even quite a long time after extractions. This one proved unexpectedly resistant to being removed and I had to get a firm grip with tweezers. It came away with a chunk of the jawbone attached. About 10 by 5 millimeters, it looked like a piece of coral. Yuck! Another necrotic bit of bone. No pain, a mere trace of blood. The dentist sent me to the consultant who put me on an antibiotic. This was in case it was not just a bit of long-dead bone, but the result of a quietly simmering infection. I was on tablets for two months. A covering of gum soon grew back over the bone. There is a distinct indentation at that point but no real problem, though I'm still a bit nervous when chewing. I feel fine. But I've been reminded not to push my luck. So despite the steadily improving trend setbacks are still possible.
What was the worst thing about all this? Surprisingly, not the really scary-sounding bits like having a large part of your tongue cut off or the radiation. These were not pleasant but didn't last long. The worst long-term discomfort has come from having teeth out (in combination with the scarier things). This has given me eating problems as I have suggested above. These have not completely gone away four years later. Not helped by damage to taste buds. I'm a person who enjoys food; I'm even quite a good cook. Eating anything too hard, too crunchy, too hot, too cold, too salty, too spicy (such as an over-hot curry or chili con carne) can give me problems. It is a constant reminder that things aren't quite as they used to be. What was best about it all? Are you joking? The fact that I'm still here and in pretty good health. I like being alive.
OCF Note: We have posted Paul's story just as he has written it. The original can be viewed on his own web site. We have reprinted it here with his permission. As with all the stories that have been submitted to us, they each contain a few technical inaccuracies, after all, none of the posters are doctors or authorities on cancer. So we ask that you always consult you own physician regarding questions that you have, and not consider these anecdotal stories medical advice, or that your experience will be the same as theirs. Technical inaccuracies aside, they bring something very important to all of us. They are the stories of those who have fought the beast and are still here to talk about it. In Paul's case with an amazingly positive perspective. We believe that his positive attitude and adjustment to his cancer experience as well as the difficulties which accompanied it, show him to be a man of significant personal strength. Perhaps more than most. One caveat we offer readers: If you find a bit of something (like the remainder of a piece of necrotic bone) perforating your soft tissues, have a professional doctor take a look. While Paul is cavalier enough to take matters into his own hands, (or should I say tweezers), this is probably not a good idea for the average person.