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'I want to live and love'

'In De Profundis, Oscar Wilde is writing a letter to Alfred Douglas and he's talking about this new wonderful world that he has discovered and he can't wait to explore it when he gets out of prison. He says, 'Do you know what this new and exciting world is? It's the world I lived in all along.' That's how it was for me," says Lia Mills, smiling. Since she had cancer, she relishes her life.

Up until her illness, life had been pretty good for the Dublin writer; "a golden time", as she calls it. She was living in Killiney with her family, working as a freelance arts consultant, while her writing star was in the ascent. Her second novel Nothing Simple had just been short-listed for the Sunday Independent Hughes and Hughes Irish Novel of the Year Award. Shortly after the awards dinner, she went to see her dentist. This was in March 2006.

Lia had been to the dentist many times. She thought she had a troublesome abscess in her mouth. It was cancer. She went on to have major surgery, which involved removing the tumour from her lower jaw, her cheek and some of her cheekbone. She also had lymph nodes, muscle and nerve removed from her neck and shoulder. Then they took bone from her leg to re-build the right side of her face. This was followed by radium treatment.

Lia's mother was an anaesthetist and she herself had trained and worked as a radiographer many years before, so she was no stranger to hospitals; but being the patient was a different story. All during her illness she wrote in her notebooks; this was her way of keeping some semblance of normality. Being a writer, she had always jotted down her thoughts. Afterwards, she honed those observations and memories of that time. The result is her book In Your Face -- one woman's encounter with cancer, doctors, nurses, machines, family, friends and a few enemies.

While it is about her battle with cancer, the memoir covers so much more. Mills deals with hospital life -- something that we forget is going on all the time -- and although she does not flinch from hard facts, the book is also very funny in parts. Her beady writer's eyes give the book its depth.

Take when she is in a wheelchair and being pushed by a hospital porter. They queue for the lift in the hospital, along with several able-bodied visitors. (I don't think I will ever be able to take the lift the next time I visit someone in hospital.) She writes of an Italian doctor who waltzes into the ward one day and makes all the women swoon with his Mediterranean magnetism and delightful flirtations with the older women. "The state of me," says one female patient, as if she is meeting him on a date. After he goes, all the women blush and smile, as his presence lingers in the air.

Lia had some bone taken out of her leg to rebuild her face. One day, her young grandson Ryan came in while the dressing was being changed on her leg. She was worried that he would be horrified by the gruesome sight. Instead, he was impressed with her raw wound and asked -- "Did a shark bite you?"

However good a person's memory may be, nobody remembers everything. (Nor do they want to, sometimes.) Mills's recording of the events as she went along makes you feel that you were there with her, step by step. Not only was writing her occupation, but it proved to be her life-saver -- it gave her a purpose in hospital and became a very welcome distraction. She wrote her way through her sickness, her confusions, her anxieties, through the whole damn lot -- even if it was just to jot down which tablets she had taken. When she wasn't able to utter the line "I have cancer" she was able to write it. (Like many people, she had a block about saying the word "cancer".) Writing in those notebooks was a way of survival. And survive she certainly did.

On the day I meet Lia in her Killiney home, she tells me that she is still on tablets and has regular check-ups but her treatments are finished. In other words, she is out of the woods. Her leg has healed and no longer does she limp. There is a little flesh missing from her right cheek but it is certainly not half a face, which was what she had imagined and feared. Thanks to work with a speech therapist, she can speak clearly.

After her operation, the doctors told her that they didn't think she would be able to smile again. She defied them and now, not only is she smiling, but with the help of daily facial exercises and practising certain sentences, the muscles in her face are not stiff and her speech is no longer slurred. She thought that she would lose her sense of taste for good but it came back. And with reduced hearing, she wears a hearing aid in her right ear -- it works just fine. Then there is the huge achievement of producing this book in such a short time.

Lia Mills has come a long way since that day in April 2006 when she was diagnosed with "invasive non-differentiated squamous cell carcinoma" to give the official title. Right now, life is good. As she says in her book, "I am as alive now as I have ever been, maybe even more so."

She still remembers what it was like when she was told she had cancer. In some ways she says that there was a sense of relief, as at last she knew what was wrong with her mouth. (It had been troubling her for some time and the lack of diagnosis was a worry.) Finally, she had been given an answer.

"It was recognition," she says, "but it was like 'okay, let's get on with it now'. I did feel almost as if somebody had flicked a switch and I'd been shunted down some sidetrack, away from my real life. I was heading into this unknown other world -- the world of the hospital -- and I was just trying to stay calm. I was thinking, how am I going to tell the kids [she has three daughters in their 20s, Zita, Emma and Nessa] and Simon, my husband? Simon was away -- he works in London during the week (he's a geophysicist) and comes home at weekends.

"Emma was coming up to her engineering finals -- she had been in college for four years and had worked her ass off. My mind hooked onto the idea that this was going to blow Emma's chances because she wouldn't be able to concentrate. I didn't know what was going to happen. I thought I was going to die in the next couple of weeks. I know it sounds stupid but in a way obsessing about Emma's exams, thinking, 'How could I sabotage her like that?' was my mind protecting itself from the reality. It gave me something else to think about, a practical focus. I probably knew that I was spinning myself a yarn, a defence mechanism. Simon came home the same day and I was shocked. I don't know why I didn't expect that, as he was due home the next day."

Lia and her family have always enjoyed a close, loving relationship. Thinking about her family and how her illness would affect them was almost too much to bear.

"Any time I thought about any one of them, the thought of that brought so much pain because you felt you had to consider leaving each of these people individually and they mean so much to you."

Lia had known Simon as a teenager, when she was growing up in Dun Laoghaire, but it wasn't until she met him in London years later -- when she was working there as a radiographer -- that they fell in love. They married and went to live in America for 10 years. Their three daughters were born there. It was in the States that Lia began to write seriously. (With visa restrictions, she wasn't allowed to work, so she bought a typewriter and got cracking. She had always been writing, even as a kid at boarding school.) They came back to live in Dublin in 1990, and having completed a distance learning degree in the States, Lia went on do a Masters in Women's Studies in UCD. Her first novel Another Alice was published in 1996.

Everything went well until the cancer, when Lia surrendered herself to the doctors and nurses and vast teams of people who did magnificent work in treating her and supervising her recovery. It was a long and sometimes bumpy road and the book deals with it in detail.

In Your Face is incredibly honest. It tells of Lia's journey and chronicles the kindnesses she experienced and her coping mechanisms. For example, she was not allowed to have flowers in the hospital, so her family would take photos of the flowers and stick them onto a collage they had made. The wall in her room in hospital had photos of friends and family, notes and cards -- all reminders of a life she had outside hospital.

But the book deals with unvarnished honesty about her experiences in hospital. For instance, the way in which she was told her diagnosis -- a page was faxed in and the doctor, hesitant about reading it out to her, suggested that her consultant should tell her its content. In the end, she asked to see the page and was left to read it herself.

Later on in the book, as she goes to the hospital for further treatments, she writes of frequently having to limp from a distance in the car park, as the wheelchair parking spaces were illegally occupied.

After the operation, Lia was left to deal with her new face. When I ask her how this affected her, she explains the sort of woman she was before she had surgery. She was not the type who was pre-occupied with her physical appearance.

"If I ever caught sight of myself in the mirror -- and it's not something that I was in the habit of doing -- I didn't particularly like what I saw. I was the sort of person who'd get out of the shower and run my fingers through my hair. It was really short and for several years I never even had a hairbrush. I'd just go out the door, without even looking in the mirror. There was this whole thing about you're putting on weight and going grey, but that was nothing to do with me. I had a whole challenge about what I actually looked like. That woman was just as much a stranger to me as the face I have now."

Sometimes Lia sees people on the street looking at her new face. There was the time she was at a Holy Communion and a little girl in the seat in front turned around and stared at her, intrigued. But Lia can understand that, as she would have done the same at that age. However, some adults were almost childlike in their rudeness. One day Lia went into a restaurant and a woman stared at her face and kept on staring, so Lia stared back at her. "I think she thought I wasn't able to see her.

"But it's not just about how you look," Lia points out. "I had never thought about the mouth before. Is it an organ or a structure? I still don't know how you'd properly define it but you do so much with it. I was considering the possibility of not being able to eat, of not being able to talk; so really, it's not just about how you look. So many of our rituals, and so much of our social life is conducted around food. I can taste again but I didn't know that I was going to get my sense of taste back and not everybody does. I had never really thought about my voice, but when I was afraid that I was going to lose it, I realised how much it meant to me. I don't want to make a big deal about it but talking is tiring for me; even mechanically opening and closing my mouth is a lot more difficult. But I keep doing the exercises."

People are only human and many are clueless when faced with cancer. Lia came across some tactlessness, and I ask her to elaborate. What should we say or not say, when faced with someone with cancer?

"I think what you don't need is for people to tell you what you're going through. I don't know whether it's more the case with cancer than anything else, but for some reason people do seem to have an irresistible urge to tell you what's happening to you or to tell you how you're feeling, with the best will in the world. I think what you need is for people to ask you how you are and what you need. You want them just to be there and to be open and to hear whatever you have to say.

"I think it's really important that people are real with you. For quite a while, I think that most of my friends would park their own lives at the door and come in and prepare to sit with me -- and this wasn't what we were really like together, normally. You want them to make you laugh, to tell you stories about their own lives. I wanted to be not thinking about myself all the time. I got so bored living with the cancer 24 hours a day. Any kind of diversion was great.

"Every kind of cancer is different and everyone's experience of it is different and it's really important that I recognise this."

Some people told Lia that having a positive attitude was crucial. While she concedes that it helps, she is also somewhat sceptical about that line. "I don't think some people die because they have a defect in their ability to be positive or that other people survive because they have a brighter outlook. Cancer is a disease that some people die from through no fault of their own and other people don't die from it, but that's not because of any particular inner strength. On the other hand, if you have any disease you may as well be as positive as you can."

Lia's sister Lyn died of cancer at the age of 33 -- it spread from the breast to the liver -- and Lia says that she was an incredibly positive person. No wonder she doubts the positive attitude line. Ever since her illness, Lia is a different woman -- both physically and mentally. What did she learn from having cancer?

"The most fundamental and radical thing that I learned was that I want to live. It really surprised me --the intensity and the ferocity with which I discovered that. It's like having a life lifted out of some kind of mire that it's been stuck in and having it brightly polished and shining and handed back to you. My life wasn't in a mire but it's the way you can get pre-occupied with dramas, trivial or not so trivial, all the failures, real and imagined. It's like you've done something horrible and stupid and somebody forgives you for it and sorts everything out. It's like that feeling of relief and freedom and everything opens out. It made me realise that my life is something that I want.

"Now I pay much more attention to my life and the world around me. The fact of being alive is extraordinary and it's not going to last, for everyone. Now I think a lot more about doing what I want to do rather than what I feel obliged to do. It made me think of my family and friends, all the people I love. I think of all the time I've wasted, when I could have been putting my energy more whole-heartedly into writing. Having cancer made me realise that this is real and happening now. You're running out of excuses. I better pay attention to my life because life is short. What will I regret not having done ?"

And so, since having cancer, Lia Mills gets on with her life, living more intensely than ever.

'In Your Face' is published by Penguin Ireland (e19.99)

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