Who would ever think a mouth ulcer would be a sign of cancer? The novelist Lia Mills has written an acute and insightful memoir of her passage through the cancer ward. She talks to Kate Holmquist.
Deep down we all know we're heading for it - that moment when the diagnosis changes everything and suddenly there's not enough time. It throws every dull moment of ordinary living into relief, making even a fly buzzing over our head around the hospital bed seem almost sacred.
It's people such as the novelist Lia Mills, who was only 48 when a painful mouth ulcer turned out to be a devastating and rare form of cancer, who learn to appreciate that wayward fly. They take the journey towards discovering what's really important and use some of their precious time to share it with us. As she writes in her account of surviving mouth cancer, In Your Face, one's definition of time changes after a 50/50 prognosis of survival.
The wait for the green man at the pedestrian crossing seems too short and the prospect of a week in Annaghmakerrig to work on a novel is no longer enough when you need another 25 years to write the novels living in your head. In Your Faceis so affecting because it's completely honest and written in the present, without the editing of retrospect. "Some of the things I go back and read, and I surprise myself that that's how I felt at the time, because I didn't remember it that way," she says.
Certain information she just didn't take in, even when doctors did their best to explain it. Mills learned that doctors know the process of discovering how bad things really are can take time. The truth had to be repeated or drip-fed until the whole, terrifying picture became clear.
Mills is the author of two highly regarded novels, Another Aliceand Nothing Simple. She was in the middle of writing a third novel when she ignored a niggling mouth ulcer, despite the fact that her father and a sister died of cancer. (Another sister had survived it.) We worry about our breasts, our skin and everything else, but who's alert to changes in their mouths? Yet a worrying number of younger women are getting mouth cancer, a disease previously associated with heavy drinking and smoking in older men. Mills says her doctors have likened it to the cervical-cancer epidemic.
Mills's dentist referred her to Dublin Dental Hospital, where she was told she would have to wait seven months for an appointment. If she had waited, she'd be dead. Fortunately, Mills consulted her GP, who referred her to specialists who immediately saw the urgency of the situation. Eventually, surgeons cut away half her lower face and built it back again with a titanium jaw filled in with grafts of bone taken from one of her legs. The multidisciplinary team worked magic, planning how they would rebuild her face at the same time as they were analysing how much they would have to take away.
It was only the night before surgery that Mills realised they might have to remove an eye as well. Before then, the information hadn't sunk in.
In hospital Mills discovered a parallel universe of people living with illness, some of whom were far worse off than she. "Now when I hear about a road accident, or hear an ambulance siren, I think: There's someone's life that has completely changed in a nanosecond. I think about the people who have to look after them. I think, someone has thrown this person into another world, and they have no choice about it."
Mills might have lost half her face, but she had her mind, her private thoughts and her writing, and, in some fundamental way, she felt lucky. But her greatest fear was losing her ability to communicate. For years Mills has been involved in writers' groups and has given talks about the experience of writing. Although public speaking used to terrify her, she learned to enjoy that jumping-off-a-cliff feeling of sharing with an audience, come what may. It was hard won, this knowledge that she could stand up in front of a crowd, and losing that ability to communicate was the thing she feared most.
Today, sitting in her kitchen in Killiney, in south Co Dublin, and offering a plate of delicious home-made chocolate-chip cookies, Mills is a miracle. Not just because she speaks so well but also for the simple fact that she survived. She has two eyes, she chews those scrumptious cookies in a normal way - even though she may still feel a little self-conscious. Most magically, Mills can smile.
"I wasn't supposed to be able to smile," she says. It's unheard of, she writes in her book, for nerves cut away by surgery to somehow spring back to life. But it happened for her. This set her thinking about that elusive thing called hope.
"Hope is something you can't always feel," says Mills, "but I also think you can lead yourself towards it even when you don't feel it, by taking everything as it comes, minute by minute, and by appreciating small changes as they happen. Even a simple thing like opening my mouth started out as a near impossibility.
"But over time, through seemingly endless - and sometimes seemingly pointless - exercises, I stretched it out so that now I can eat and talk more easily - and it's not over yet. My range is still increasing so long as I keep working at it. If I skip a day, it begins to stiffen up. I think that was a huge lesson for me not to give up, in anything. And that to persist with the smallest things that move you towards recovery can feel empowering."
Although it was the bone structure and skin of her mouth that had to be rebuilt, the pain and disability in her leg as a result of having bone and tissue sculpted out of it were almost as shocking. Mills has three daughters, 25-year-old Zita, 23-year-old Emma and 20-year Nessa, a six-year-old grandson, Ryan, and a husband who has lived and worked in London during the week for years, and she wasn't accustomed to having to ask anyone for help.
"I'm so much stronger now than I could have imagined last year," she says. "Which brings me to another thing I learned: patience. I had to befriend my own limitations and slow down to keep pace with them, just as my friends and family slowed down to match mine."
Becoming weak and accepting it brought Mills a new kind of strength. "As far as changes go, there have been extreme physical changes, but despite the physical discomfort I'm more comfortable with myself," she says. "I know that's bizarre . . . I'm a Libran, so while I am constantly aware of mortality and the fragility and miracle of life, I'm also fundamentally optimistic."
Mills's family were used to relying on her, but they also had to change to provide support and daily care. And yet nobody has been harmed by it. Everything has worked out.
"For someone who might be facing into a similar situation who might read the interview, I'd love to have something solid to offer by way of hope . . . It's a bit like writing a novel. You don't sit down and write it all at once. You do it word by word. Getting through this was like that for me. Breaking everything down into single digestible facts, single events, single encounters. Taking it one breath at a time. I think that's it."
No doctor ever told Mills how many breaths, days, months or years she had left. Her husband read on the internet that she had a 50/50 chance, but Mills, having discovered hope and patience, doesn't think about numbers. She says: "Statistics are absolutely meaningless when it comes down to individual cases. Every cancer is different, and every person's experience of it is different. And if everything seems to be stacked against you and there is only a 1 per cent chance in your favour, there is no reason why you can't be lucky enough to fall into that 1 per cent.
"The bare statistics can't take everything into account, like how old you are when you are diagnosed, or what environmental factors - good or bad - you've been exposed to and whether or not you have other strengths and weaknesses and what those might be. In my case, for example, I have to put my hands up and say that I was a vicious, determined smoker for a lot of years, but I had also given up smoking - often, but sometimes for significant lengths of time - and every day as a non-smoker was a potential point in my favour."
Being a writer, Mills is starting to think once again of finishing the novel she began before her diagnosis. Of course, after what she has been through, its characters have been changed by their author's experience.
Mills considered changing her ambition to write the great, time-consuming novel that has been living in her head for years and, instead, going for something shorter and simpler. Then she thought, What would I write if I had all the time in the world? Can't I just go for it? Why should I change my ambitions?
Mills once heard Seamus Heaney on the radio, talking about having lived a working life that he now feels content with and fulfilled by. Mills wants to have that feeling. She's not going to let cancer stop her. The next novel is going to be the big one no matter how much time there is. That's what Mills learned about hope.
In Your Face: One Woman's Encounter with Cancer, Doctors, Nurses, Machines, Family, Friends and a Few Enemies by Lia Mills is published by Penguin Ireland, £12.99