'Mouth cancer left my face like a train wreck, but was I going to hide for the rest of my life? No, because I'd been given another chance'
Ten years ago Lia Mills was diagnosed with mouth cancer, and survived a gruelling round of surgery and treatment. Ahead of Mouth Cancer Awareness Day next month, the well-known Dublin-born writer talks to Emily Hourican.
For anyone unlucky enough to be diagnosed with mouth cancer, along with all the horrible and terrifying new information thrown at you, one name crops up again and again: Lia Mills. "Have you read Lia Mills' Word of Mouth? You should." "Here's a copy of Lia Mills' In Your Face. You might find it helpful."
Because Lia - writer, much-admired novelist and mouth cancer survivor - has been there, and been there in a way that was both devastating and dramatic. Ten years ago after being diagnosed with advanced-stage cancer, she had major surgery to her face that involved removing a large section of her cheek, part of her lower jaw, a smaller part of the cheekbone and all the lymph nodes on the right side of her neck.
At the same time, the jaw was reconstructed using bone taken from the fibula in her leg, then patched up with fatty tissue and skin taken from the same spot. Post-surgery, there were numerous complications, including infection - "you could see the bone, I looked like something out of a horror show" - and an undetected broken bone in her leg. And then she started radiotherapy.
It's not just that Lia survived the surgery and treatment - her odds of staying alive were a pretty stark 50-50 - what is remarkable is the way in which she has thrived and emerged victorious. Before being diagnosed in 2006, she had published two acclaimed novels, Another Alice, and Nothing Simple. Since treatment, she has published In Your Face, described by Anne Enright as "a life-changing book for me", and, most recently, Fallen. She has also done significant work for mouth cancer awareness, in recognition of which she was recently awarded an honorary doctorate from Trinity College in Dublin.
When I was diagnosed with cancer of the tongue base last November, I skim-read Lia's In Your Face. I was too scared to read it in much detail - sometimes a kind of wilful ignorance is preferable to too much knowledge - but I got the essence of it. And so, when we meet, even though Lia is now 10 years out, I am ready for what I assume will be the very visible physical legacy of all that surgery, the subsequent infections, the many weeks spent in hospital and months of painstaking, often uncertain, recovery. In fact, all I can really see is what looks like a very deep dimple on her right side.
"I have a lot of hair," she says with a laugh, when I remark how little there is to see, then adds: "I found that very often, people barely notice. Everyone has their own preoccupations. Sometimes people will look again, I would myself, it's just curiosity and it doesn't hurt. Kids can be really curious - and that's okay, too. But some people can be very rude."
She has a lovely voice, low and gentle, full of humour. "Mine was a really late diagnosis," she says, "and that put an enormous strain on me, but also on the health service. If I had known about mouth cancer, I would have been a lot more proactive. I would have followed it up more intently. I was going to two different dentists, and they missed it. It's a cancer that has a genius for disguise. I had a sore in my mouth that wouldn't go away; I thought it was a mouth ulcer that had gone crazy. By the time I was diagnosed, I was not able to open my mouth properly."
Despite a family history of cancer, Lia didn't fit the established profile for mouth cancer.
Lia's sister Lyn tragically died of breast cancer, and her other siblings have known more than their share. "Between six of us, we've had seven cancers," she says. "We're riddled, genetically.
"I was in my 40s, I had given up smoking seven or eight years before, I was a social drinker. I didn't fit the profile, and that's why they missed it."
Given how associated she is, through the remarkable work she has done, with mouth cancer, does she ever get sick of being, essentially, the poster girl? "I'm never sick of it, but I do feel that because I'm 10 years on, what I have to say is less relevant to somebody who's in the middle of it now." As for the ways in which she feels the cancer changed her: "I would never have chosen this, but it is so much a part of who I am now that I can't imagine it not having happened. Because, too, I engaged with it as much as I did. I wrote the book, I got involved with the campaign. And I've met extraordinary people. Some of them have made it through, some of them haven't."
There are things we say about life-changing experiences like cancer. Things about finding out what's truly important in life, about the astonishment that comes with discovering the depth of love that holds a family and community together. They are cliches, perhaps, but for a very good reason. So often, they are true.
And for Lia, despite the undoubted trauma, the on-going challenges, there has certainly been good too. In fact, her response is surprisingly resilient and upbeat.
"I feel that I was sleepwalking through my life before this happened," she says. "And really, it was like being shocked awake. I swear, before that, I thought that at some point somebody would wave a magic wand or open a door and I'd step through it and find myself inside my life. Do you know what I mean? I was waiting for the bell to ring. Instead I realised, 'Oh my God, it could be over.' And I couldn't talk my way out of that. I couldn't reason my way out of that. I had no real control over what happened anymore. I was either going to live, or I wasn't. It was 50-50, either-or; live or die. But I found that liberating.
"Statistics," she says, "know nothing about you. They know nothing about your health, about luck, they know nothing about your genetic and medical history. And that's really important. When people get a diagnosis like this, they go straight to the internet and start amassing all these figures. But you don't understand what you're reading and you don't know what all the implications are."
Was there anything that surprised her, about herself, as she went through the treatment? "I discovered that I was an optimist, and I was really shocked," she says with a laugh. "I thought I was a card-carrying pessimist before that; cynical, hard-bitten - that was my view of myself.
"Actually, I discovered I wasn't that at all. I'm fundamentally an optimistic person. Not that I hope for the best, but that I could see good things where I wouldn't have expected to see them. 'Better to light a candle than curse the dark', I discovered was my attitude. I was all about the cursing before. That discovery was a good thing. And that probably also helped to get me through. My face was like a train wreck, but was I going to hide for the rest of my life? Or was I just going to go out? I had been given another chance."
And that, of course, is the nub of it. Another chance, to be alive, to be in the world. And to discover the depth of goodness in people around, too. "My three daughters - they really were genuinely fantastic. I knew they were fantastic before, but I didn't know how fantastic. They went out in public with me, they did things, they saw things that I'm not sure I would have been able to handle at their age. My sisters, my husband, my friends; everyone was terrific. It surprised me, how much love there is. It's really amazing."
Did she feel a responsibility to keep trying, keep battling, for their sake? "No, I think I'm more selfish than that," she says. "I wanted to get on with my life and live for my own sake. I wanted to be around for them, I wanted to be there in their future, and I'm really glad that I am. I have four grandchildren now, with two on the way. I only had one when I was ill, so that's three brand new people I wouldn't have met if I hadn't survived."
But back now to Lia the writer, before cancer entered her life. She grew up in Dublin where her mother was an anaesthetist, and her father, who died when Lia was six, worked for the Electricity Supply Board. "I ran away to London when I was 17 or 18," she says. "And trained as a radiographer in St Thomas' hospital. A friend of mine was going, and she was studying radiography, so I went too. I was desperate to get out of Dublin." Why, I ask? "I just was. I had a real love-hate relationship with it at the time - the way you couldn't go anywhere, do anything, without eyes being on you. I did my Leaving (exams) when I was 16, and had to repeat it, then I did a year in UCD, Arts, and dropped out. I was a really bad student. So I went to London, came back here, worked, got married to Simon, and we went to live in America, in Texas and California."
The couple stayed in America for 10 years, during which time their three daughters were born. Because Simon is a geophysicist, he is often away, meaning Lia was often alone. "I felt that I had landed on another planet and I was surrounded by aliens," she says, of the experience of first becoming a mother. "We were in America, I didn't know anyone, I had no friends, I didn't know anything about children. I didn't know what I was doing. I was lonely, homesick, and I was missing my job. My solution to that was to leave my door open and fill the house with neighbourhood kids, other mothers who were at home, and just be really gregarious. It meant that life was really busy, there were always people in the house. And it was fun. That's how I got through it. I think that the model of a young woman being home alone with small children is very difficult and isolating. It's lonely and pressurised and frustrating, when you are picking apart the Lego for the 99th time that day."
During those 10 years, Lia couldn't work, because she had no permit, "so I did all the things I could, like look after other people's kids". But the itch to write was already under her skin. "I had always wanted to write," she says, "but I was in my 30s by the time I started. I had wasted a lot of time." Did it feel wasted? "Yes, it did. It was frustrating. Looking back on it, I think I had no one to blame but myself. I was telling myself all kinds of things - 'you have nothing to say,' 'you're looking for notice', all those voices from your childhood. It was really inhibiting." So what was it that finally got her past those cruel voices? "With my first novel, Another Alice, it was the power of the story itself. I really felt it had to be told. It kind of burned its way out of me. It silenced the voices, because the novel was bigger, louder than them."
Writing, she says, "is hard. If it was easy, everyone would do it." It is also, clearly, a lifeline, and a reward. Asked what got her through the worst days of treatment, she doesn't hesitate.
"Writing. Absolutely. I brought notebooks into the hospital with me. I found that I had to write everything down, because there is a completely new vocabulary coming at you all the time, new names, new faces, new specialities - there were so many of them. I was writing all of this down, and I suppose because I'm a writer, I was putting everything in there - what I was thinking, what I was afraid of, what I wished. It was a place I could be myself, in the middle of all of that defining that goes on in a hospital. That was where I wasn't the disease, where I was still living my own life. I learned a lot about myself, and what writing means to me."
"I know this sounds really corny," she laughs, "but it was absolutely how I felt - that writing was the thread that guided me through it and brought me back out into the world." With dignity, with grace and humour. A worthy poster girl.
- Fallen, published by Penguin, is out now. Mouth Cancer Awareness Day is on September 21