• 11/7/2007
  • London, England
  • Lia Mills
  • Daily Mail (www.dailymail.co.uk)

Novelist Lia Mills put off seeing a dentist about a sore tooth for months. Even then, the true nature of her condition was missed and it took a year before she was diagnosed with oral cancer. Here, Lia – who is 50 and lives in Dublin with her husband, Simon – tells her harrowing story…

The receptionist at the Dental Hospital looks about 12. She is completely indifferent to me and to the painful open sore in my mouth. She takes my referral letter and says it could be seven months before I get an appointment.

But my GP says this is too long and gets me an appointment with a maxillofacial surgeon ten days later.

When I see him, I explain this is all a mistake. The swelling in my cheek has gone down, and I’m sorry for wasting the consultant’s time. He says it’s better to get these things checked out. He begins to poke around and at first says what other people have said. It looks like a trauma, I’ve probably been chewing my cheek.

He pokes around a bit more and says: ‘Mmm, maybe not.’ He does a biopsy; he says he’s sorry, he knows it hurts. The biopsy request is marked as ‘urgent’. The pain in my cheek throbs and swells.

I’ve been on the internet again, and now I’m sleepless with pain and sudden anxieties. I return to the hospital a week later. The doctor studies my results and make notes in my file. He says the consultant will give me the results.

The nurse says the consultant has left the clinic. This doctor starts to look uncertain. He tries to track down a person who will relay the contents of a document which he holds inches away from me.

‘Can I see?’ I ask. He hands over the sheet of paper. My eyes skim through layers of unfamiliar language to the key phrase near the bottom of the page; invasive nondifferentiated squamous cell carcinoma.

I have to be admitted for more tests. I ring husband Simon; right now, I don’t feel anything. He hurries off to check out oral cancer on the net. Don’t censor anything, I say. Half an hour later he rings back to say I have a 50 per cent chance of surviving.

But first doctors must discover the extent of the cancer. Scans show the disease hasn’t spread beyond the localised area. It’s in my cheek and gums, underneath my teeth and in at least one lymph node in my neck. It’s not in the tongue.

They plan to operate to remove the tumour and a clear margin around it. I’ll lose part of my lower jaw, together with the cheekbone, half of my salivary gland near the ear and all the lymph nodes on the right side of my neck.

During the same operation, a plastic surgery team will take bone from my calf, along with fatty tissue, arteries, veins and nerves, which they will use to rebuild the inside of my mouth.

I will be left with facial nerve damage resulting in a droop to that side, paralysis, scars and an inability to smile. Surgery will be followed by radiotherapy.

Listening to the prognosis, all the things I’ve done wrong plague my thoughts. Why did I not pursue this more vigorously? Sooner? There is a terrible instinct to find someone to blame.

I don’t fit the normal profile of a sufferer – oral cancer usually affects middle-aged smokers, but it’s increasingly common among younger men and women, and is often not detected until too late.

But I put up with pain in my mouth that I wouldn’t have endured in any other organ.

Early in 2005, I went to the dentist to have a wisdom tooth removed as I’d been chewing on my cheek in my sleep. Going to the dentist is not fun, so I put it off for a long time.

Months later my cheek became sore again, with whitish patches, which my dentist put down to cheek-chewing again. The next time I saw him, he recommended mouth-ulcer gel. A further visit was no more helpful.

Meanwhile, the sore area spread and changed colour. A second dentist diagnosed erosive lichen planus. He replaced some fillings and prescribed antibiotics and steroids. It did no good.

I went on the internet, as you do, and read that erosive lichen planus can be a pre-cancerous condition. If it persisted I should see my GP to get it checked. Not at all, said my dentist, adding that he was glad I’m not the kind of person who runs to my GP at the first suggestion from the net.

I quite like not being that kind of person, too. However, when the sore area in my cheek got worse, I went to my GP.

And so that brings us to the night before the operation. It’s time for the tumour to go, even if it does take half my face with it. This may be unreal, but I feel OK about it.

My operation takes 14 hours. The first days pass in a fog of pain and panic, the latter because of discomfort with the tracheotomy – a breathing tube attached to a ventilator has been inserted into my throat to help me breathe – and the dryness of my mouth.

I can’t drink for ten days, to avoid infection and promote healing. Although I am on intravenous fluids, I crave water. I often wake up fighting for air, begging for water, so I am frightened to sleep.

I am catheterised, I can’t speak because of the tube in my trachea and I can’t walk. I am also hooked up to neon-green bags of ‘feed’ that hang from a drip stand. It makes me nauseous and I am frequently sick. A week later, I see my face for the first time. My daughter brings me a pocket mirror.

I can see only bits of me, in stages. It’s probably just as well.

I clock the staples, the stitches, a deep gouge where my cheek used to be, my swollen chin; I look like Desperate Dan from The Beano, with stitches for bristles.

There’s a whispering voice in my right ear. The deafness in the left one is permanent. My throat hurts. My tongue burns. Speaking is a huge effort.

A fortnight after the operation, the tracheotomy tube is removed and I take short walks on a Zimmer frame. People turn away from my awful face as I shuffle around. I feel self-conscious.

Bad news. Two cavities have opened in the incision wound under my chin. They weep pus and hurt like hell. Then we discover another cavity behind my ear, where the bone is exposed. Three weeks after the surgery, I meet the radiotherapy team. They say there were cancer cells in 11 of the 49 lymph nodes removed during surgery.

I definitely need radiotherapy, but it’ll be delayed until the wound heals. It hits me that I’m sick in a significant way, that there’s an element of danger in it. I keep forgetting. Then I think: ‘But I can’t die. I have books to write.’

A week later, the wound is clean and shrinking, but the pain is bad. Six weeks after the operation, I do a swallow test – sterile water slips down my throat, a joyful sensation. I’m allowed to drink and eat semi-solids.

But my tongue is out of practice, stiff and awkward, and my weak lips sag and drool. I burst into tears while eating scrambled egg with Simon. I hate my family seeing me like this. I don’t want to be fussed over. At the same time, I know I couldn’t survive without them. They visit every day without fail.

They help with my feeding regime, my leg exercises and they take me to the hospital’s café for a break. Those visits keep my spirits up.

But I wonder if I’ll ever smile again. I think I feel a twitching at the corner of my mouth. But when I look, my face still has that frozen droop. If I’m out, people respond to a slurred word or my unsteady gait by assuming I’m the worse for wear.

If despair has a taste, this could be it. Strange sensations play across this non-face. I hit it, to see if I’ll feel the blow, but I don’t.

Doctors tell me to get on with normal life. But life has been taken away. I can’t do things myself, and I live on an impossible regime of diet and exercises, medicines and appointments. It’s a full-time job.

POSTSCRIPT A year later the pain in my face comes and goes. It’s tiring, but manageable. I’m a slow, messy eater but I enjoy food again.

I wake with a sulky, stumpy leg that has to be coaxed to the stairs and wheedled down; but I can walk, and it doesn’t usually hurt.

People don’t usually recognise the new me the first time they see me, but I’m used to it. Don’t we all go around in a disguise of one form or another? Well, this is mine.

Adapted from In Your Face by Lia Mills (Penguin Ireland, £12.99). © Lia Mills 2007.