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Prologue

In January 1999, Louise began the diary on her website.

When I was fifteen I spent about six months in bed with a vague, undiagnosed condition described at the time as a post-viral infection by my GP. In retrospect I think this was a symptom of my condition, although it was not diagnosed for another nine years. From the age of eighteen I suffered from pretty appalling headaches and turned to alternative medicine for the answer, having had little help from my then GP. I was treated by acupuncturists, homeopaths, osteopaths, nutritionists, reflexologists, aromatherapists and various spiritual healers. No one suggested I had a brain scan or even intimated that they might not be able to sort out the headaches. During this time I was vegetarian and did copious amounts of yoga and T’ai Chi. I also spent a great deal of time searching for a reason within myself or on some spiritual level as to why I was in pain.

In 1993 I fell dramatically in love with Tim, who proposed two days after we first kissed. We were married three months later and are still blissfully in love. In November ’95 we had Caitlin, our gorgeous little girl. During the pregnancy I developed Homer’s Syndrome (a drooping eyelid), so when Caitlin was six weeks old I had a brain scan. What it showed was a very large ‘shadow’ in my sphenoid sinus in the centre of my head. I had a biopsy soon afterwards. A week before the biopsy results were due the hospital phoned at 8 a.m. and asked me to come in. I overheard the surgeon asking a nurse to ‘come in while I tell her’, and at that point I knew I had a malignant tumour.

He told me it was slow growing and I had had it for years – also that it was very likely to be inoperable as it was in ‘tiger country’. A couple of weeks later I met a fantastic surgeon, Professor Gleeson, and after a load of tests and scans he and a brain surgeon called Mr Strong did a twelve-hour operation to ‘debulk’ the tumour. After some recovery time I had a very intensive course of radiotherapy and chemotherapy.

That was all two years ago. I made a fantastic recovery, discovered photography, made a darkroom in our house, rediscovered all the important things in life and generally assumed I had learnt what I could from the experience of having cancer, that I was a happier, more fulfilled person and that I was in remission. I wrote in an article for Marie Claire magazine ‘I think the cancer has given me more than it has taken away …’

Just after Christmas I lost feeling in the right side of my face. At first I thought it might just be the result of a bad cold I had had recently, but when it hadn’t gone after a few days I rang up my GP, who told me to go back to Guy’s. After a meeting with Professor Gleeson again I was in no real doubt that the cancer had returned (or rather, never really gone away), but when I went for my scan results meeting I was expecting to discuss chemotherapy dates. What actually happened was that Professor Gleeson met Tim and me and took us into his office as opposed to his consulting room and told us, in a very caring and clear way, that I was going to die. He showed us the scans and told us that there were one or two people he could talk to if we wanted him to about the possibility of treatment of some kind. However, preliminary enquiries he had made indicated that no one thought they could do much more than slightly extend my life, and that at great cost to my health.

My memories of chemotherapy were not good, to say the least, so we decided to see if anyone thought they could help, but to reserve the right to decline if it looked too painful. In the event there was only one doctor who thought he might be able to do something and after he saw the scans he decided he couldn’t. The tumour is currently residing in the main vein in my head (which makes surgery impractical) and around the back of my nose (which is somewhat bloody). My face (well, half of it) is still numb, but I am in no pain and do not look any different.

I am rather deaf on my right side – although strangely enough the ticking of clocks I find almost unbearably loud.

This was what Louise (or Weeze, as I called her) put up by way of a background page on her website which was to be a diary of her last year of life. I’m not sure when we started out on the extraordinary journey that the last year was to be that either of us had any idea what it would really be like to go through such a traumatic experience. Her tone seems very jolly, very upbeat, and writing this as I am only a few days after she has died it seems almost ridiculous to imagine that we could even try to document such a tragedy. But that was Weeze, she was and is one of the most positive people I have ever come across. Not blindly positive though, and indeed in the last few months her moods swung desperately from despair to elation, but as you’ll read from her diary she managed to find things from this terrible disease which gave her an insight into life and living which few people ever gain.

Louise always wanted to be a writer – the people she most admired were writers, poets and artists – and her diary was really her last chance to join the ranks of those that so enriched her life. As with all of us, she always thought she had time to do things later, a novel perhaps or a collection of poetry or something. She had an artistic spirit and in her final year she blossomed. Nothing focuses the mind like a deadline, I guess. She wrote and wrote, and took up photography with remarkable results and basically knuckled down to working. Without the cancer I’m convinced she could have spent the rest of her life saying ‘I must get round to writing something soon’. As it was she was desperate to get everything out of her. For the first time in her life she felt like she had something to say, things she wanted to communicate to people, and indeed she did. This book contains some of that, something of her, but not all of her, of course. We were interviewed by the Independent about Louise’s website a few months before she died and the lady interviewing us over the phone asked me, ‘What one thing will you most miss about Louise, Tim?’ At the time I remember wanting to throttle her for such a stupid question, but I took a few deep breaths and said, ‘There’s not one thing, it’s all of her, it’s every single thing of the billions of things which make her what she is that I’ll miss.’ And that’s still the truth. And with this book it will only give the reader the tiniest insight into who she really was, but that’s good in a way because that means that there’s lots of her that’s still mine and not for public consumption.

Why write the book? Good question. Louise always wanted to write a book, and when she started the diary she always hoped that one day it might get published. So when the nice people at HarperCollins approached us about writing a book Louise was over the moon. I remember her dancing around the kitchen then getting dizzy and falling into a chair laughing. ‘I can’t believe it – a book, a book! And they want you to write half of it, can you believe it?’ It made me laugh that she was so excited about sharing the project. She loved sharing things. At the time when we were planning the book it was going to be somewhat different to the way it has turned out now. It was going to be less a book based round the diary and more a book led by subjects which have come to the fore in our lives since Louise was diagnosed. It was going to be a book about us, our lives, our love, the cancer, being parents and loads of other stuff. Louise was very interested in the reactions her illness caused and how people responded to us, from religious friends who set up prayer groups, some of our younger friends who cut themselves off from us and we haven’t seen since she was first diagnosed, and a thousand other responses, some lovely, some less so. She also wanted people to start talking about death and dying – she hated the taboo nature of the disease. She couldn’t believe that people still referred to it as the Big C or called it ‘It’, as if merely saying the word cancer would somehow give it power.

She also wanted to shake people out of complacency. Life is about living and she couldn’t bear to see people wasting their lives, or whingeing about them. ‘Life’s too short not to be doing something you love,’ she would often be found saying over dinner to any number of our friends who had simply mentioned in passing that they weren’t quite as fulfilled at work as they might like to be. Her illness made her reckless with her evangelical advice. She was unafraid of telling people to change, to take control of their lives, and several people we knew ended up leaving their jobs and even partners after a particularly good session with Weeze. This wasn’t to say that she wasn’t kind and gracious and understanding, because she was all of these things, which meant that when she told you something you tended to listen more readily and really take it to heart.

Unfortunately, just a few days after we’d negotiated the contract for the book, Louise’s condition took a turn for the worse. What we’d at first envisaged the book to be became impossible. There was no way as she got weaker and weaker that she could write and the mental energy needed to talk thought the issues made it harder and harder. Eventually it became clear that Louise’s input to the book would mainly be entries from the diary she’d already written, with me fleshing out some of the issues with a kind of commentary. So this is what I’m going to do. I only hope I can do justice to her, but we’ll have a go.

Before we start I’d just like to say one thing about Weeze. She was no saint. This isn’t an account of a perfect woman, whose noble heart and pure soul brought light into the world. Weeze was a funny, strong, beautiful lady who made my whole life worth living, but I’m not going to idolize her or put her up on a pedestal. She would have hated that, so I promise I’ll try to be as honest as I can be. It may sometimes be painful and sometimes I’m sure I’ll fail, but as I set out it’s important that I intend to tell it as it was and is. If we are to learn anything from our experiences it’s important that we are truthful about them and the things that happened. Having said that, even now I can feel my mind working overtime trying to rewrite and alter the images of the last few months to protect me, so I’ll write fast and try to get everything down before Time the great healer begins to mess around with my already unreliable memory.