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Copyright
Fourth Estate
An imprint of HarperCollinsPublishers
1 London Bridge Street
London SE1 9GF
www.harpercollins.co.uk
Published by HarperCollinsPublishers 2000
Copyright © Tim Arthur 2000
Tim Arthur asserts their moral right to be identified as the authors of this work
A catalogue record for this book is available from the British Library
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Source ISBN: 9780006532422
Ebook Edition © MAY 2016 ISBN: 9780008193317
Version: 2016-05-05
Dedication
For CAITLIN
Contents
Cover
Title Page
Copyright
Dedication
Prologue
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10
Chapter 11
About the Publisher
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.
Chapter 1
In the summer of 1993 I was a svelte – well, OK, not quite svelte, but not as big as I was to become with Louise’s excellent cooking – long-haired recent graduate. As I looked out on to my future life it all seemed clouded in an exciting mystery. I started working with a group of local misfits in a comedy impro outfit called ‘The Bucket Cabaret’. Each week we’d spend hours sitting round drinking wine and lager, trying to come up with more and more ludicrous sketches. Naked chefs, freakish gameshow hosts, twisted rappers, became part and parcel of my everyday life. We played to audiences of varying size and varying enthusiasm. There were, however, some devoted regulars, most of whom knew or were going out with someone in the show. Louise was one of these. Her ex-boyfriend Lewis was one of the performers and because of him mainly she came down to lend support.
This quiet, shy, pretty lady always sat somewhere near the front and always smiled rather than laughed out loud.
I’d known her vaguely for years. When we were fifteen or so she’d been on the other side of the group of friends I hung out with. She was at that time a Goth chick who dressed in black make-up, short skirts and fishnet stockings that attempted to hide her magnificent long legs. She always scared me – she was a woman with older men for boyfriends up in London, while I was a geeky guy whose whole life revolved around a very poor rock band and playing various Shakespearean characters in school plays. Whenever I spoke to Weeze then I got tongue tied, felt incredibly short and ugly, and was generally relieved when it was over, although I fancied her more than any other girl in our town. Funny how we perceive ourselves. I was always convinced that she didn’t really like me. She later told me that she was just shy and that she saw me as this confident pop singer – she liked me, but as I always had a girlfriend she never thought it was worth pursuing. Not that she fancied me at all, as she would often say during our relationship. ‘I didn’t fancy Tim at all until we kissed then I instantly fell in love with him.’ It’s a strange backwards compliment. On the bad side she hadn’t fancied me, on the good side it must have been some kiss.
So let me tell you about the kiss. After one of the shows, Louise invited the whole team back to her house for an after-show soirée. We all sat round in the kitchen and I made a shameful attempt to impress. Over the past few weeks I’d been talking to her ex about all the things she liked, from books and films to music and behaviour in men. That night I used all my accrued knowledge to win her over. Whatever subject came up, I made sure I was the first to speak about it, saying exactly what I thought she’d like to hear. ‘Ian McEwan is probably the finest writer of our time.’ ‘Wasn’t punk a fantastic period for music?’ ‘You know what, I may be weird but I love ironing and hate watching sport on telly.’ After half an hour or so, Weeze looked across at me and said, ‘Should we just go upstairs now?’
I was convinced this transparent ploy would fail miserably but it worked a treat. Perhaps because most of the things were true – nearly every book I had ever read and loved so did she, nearly all the films that formed my early mind had had a similar effect on Weeze. OK, the ironing and sports stuff was rubbish, but you’ve got to go with what you feel. Just after two in the morning I thought it was time I should be going and I made a move for the door. Weeze said she’d walk me out and as we stood – corny as it was – in the moonlight of the front path, I leant forward to kiss her goodnight. What should have been a quick peck on the cheek became one of those embarrassing missed kisses where both thought the other was going for the other cheek and end up actually kissing on the lips. Now, what should have been the briefest of kisses lasted possibly only a millisecond longer than would have been decent, but it was enough. It was enough to make us both pull back in surprise. I started to stutter and stammer and Louise just smiled. I ran all the way home and jumped into bed and spent a restless night wondering what on earth to do.
Next morning I got up early, as I was meant to be leaving for a male bonding trip with one of my best friends, Ben, around Britain. Before I went, though, I thought it was only right and proper to go round and apologize for the previous night’s indiscretion. On the off-chance I might get a similar indiscretion. I found a CD we’d both mentioned the night before, Thank You World by World Party, and thought this would be a good excuse. As I knocked on her front door I could see her bounding her way downstairs in a pair of leggings and a very small tight white t-shirt. I would later find out that she’d put this on specifically on the off-chance that I might turn up, as the night before I mentioned something about liking tight t-shirts on women with great breasts. Well, who doesn’t? She opened the door and I started jabbering on.
‘About last night, I’m really sorry, I mean I’m just, you know, I’m not sure what happened, I’m just, I shouldn’t have done it. Well, I mean I’m not sorry it happened, it was very nice and everything, it’s just, I mean, I’m sorry if you didn’t like it.’
If I’d been two feet taller, a lot better looking and had an upper class accent I could have been Hugh Grant, such was my fumbling incoherence. She leant forward and kissed me, I think as much to shut me up as anything, and we kissed and we kissed. Quite unbelievably, we kissed for three hours in her corridor and in her kitchen. Halfway through she told me she had a friend upstairs who she’d been doing T’ai Chi with when the doorbell rang. ‘Do you think it would be rude if we went upstairs and had sex, while he’s in the next room?’ she asked. We agreed it probably was and, besides, I really had to go. I gave her my bracelet as a keepsake and I left.
‘I can’t believe I only just found you, and now I’ve got to leave,’ came out of my mouth from absolutely nowhere and I think that was the line that finally did it. She would repeat that line to me over our whole marriage as being one of the sweetest things anyone had ever said to her. Well, it’s nice to know that out of the million and one crap things that came out of my mouth over our relationship, at least I said something right.
When I got back from my week-long voyage of discovery around the British Isles I headed over to see Louise. She opened the door, dragged me in, straight upstairs and I emerged three days later in a state of ecstatic bliss and engaged.
Basically for those three days we did nothing but drink champagne, make love and massage each other. In fact, it was during one of these massage sessions that we had our magic experience. Now, I am fully prepared to accept that whatever happened could have been due to lack of sleep, exhaustion and alcohol, but I should say that I believe it to be one of the only true experiences that has ever happened to me. I’ll describe it for you and those of you with a New Age spiritual bent can read all sorts of things into it. Those of you with a more objective point of view may see it in a different way. Anyway, what happened was this: we entered Louise’s massage room – she was an aromatherapist at the time – and as we got naked we slowly massaged each other, until it felt as if touching each other was too much to take and we began to massage each other’s auras. Then it happened. I felt my heart chakra open, as did Louise, and something left my chest and passed into her and something from her came and joined with me. We sat there in silence for the longest time, unable to talk or verbalize the experience. It was the middle of the night before we managed to leave the room and went and lay holding each other in bed. I can remember saying, ‘Wow, if this isn’t love then I don’t know what is. And I don’t think I could take it if there’s anything more intense than this. I think that’s it. I think we’ve found each other. I think we should get married.’
This didn’t phase Weeze at all. She just nodded and said, ‘Yes, I think you’re right. Maybe we should just check it with the I Ching.’
For anyone who doesn’t know, the I Ching is a Chinese form of divination, which helps you to look into the future. Basically, you flip a coin six times and depending which way it lands each time will help you build up a hexagram, which you then look up in a book for some words of wisdom. We did this and it came up as the I Ching H’sien, which our book simply said was ‘beautiful marriage’. Considering none of the other hexagrams mention marriage and a lot of them are downright depressing, this was enough of a sign. I got out of bed and knelt on one knee, naked, and proposed. She giggled and simply said, ‘Let’s.’ We kissed and made love again and that was it, the deal was done, and three months later we were married.
As I read through all that, it seems like a ridiculous dream. Why on earth we were so certain it would work, I’ve no idea. It was just right, and that was it. I remember talking to Louise’s father about the wedding – this being the first time he’d met me – and he wasn’t at all phased but simply asked us whether or not we would mind waiting just a few more months so that he could get some money together to help us. At the time I thought he was mad, didn’t he get it, this was love, this was real passion, of course we couldn’t wait, we had to get married straight away. Now, though, I look back on it and wonder how he didn’t just look at me and say, ‘You’ve got to be kidding. You’ve only really known each other three or four days and you want to get married in three months. Are you crazy?’ But he didn’t say that and when we said we couldn’t wait he accepted it and I was one of the family, a family I’m very privileged to be in.
The wedding was a blast (but more of that later) and the honeymoon in Egypt was a fiasco on near biblical scale (but again more of that later). Over the next couple of years we packed a lot in. I managed to have a nervous breakdown after we lost a baby very early in the pregnancy, then Louise found out she had endometriosis and went through a series of operations and we were told we might never have children. But after all that was behind us we got pregnant, or rather, Louise got pregnant with some help from me. A thousand and one things went through my mind over the first few months of the pregnancy. Will I be a good father? Should I be strict or soppy? Do I want a boy or a girl? Boys can play rugby, but girls are cuter. That sort of thing. The one thing that didn’t occur to me was what if my wife discovers she has cancer just a month after our daughter is born?
Louise was incredibly sick all through the pregnancy, throwing up eight or nine times a day, and very nearly got taken into hospital several times because of dehydration. For the first five months or so, she was more or less bedridden. Far from gaining weight, she lost it, and as her little belly filled out the rest of her got thinner and thinner. I had a play at the Edinburgh Festival in August of that year and miraculously she got better for the week we were up there, but almost as soon as we were home again she was back to the sick bucket, which in our house was a silver champagne cooler. As Louise said, ‘If you’ve got to be sick into something, it might as well be nice.’
The sickness gradually subsided, though, as we entered the third trimester and it was about that time that Louise got her drooping eyelid. It started off as a slight thing that only happened when she was particularly tired and I think at the time all of us presumed it was something to do with the traumatic times she’d had over the last few months. We went to see our doctor and he referred us to a specialist. We sat there and he looked Louise over and told her she had this thing called Horner’s Syndrome. I can remember all the tests he did very clearly, mainly because I would see them repeated over and over again by many many different doctors over the next few months and years. She was asked to follow his finger as it moved around the periphery of her vision, he lightly touched her skin with a piece of cotton wool to test for sensitivity, he looked into her eyes with one of those torch things. All in all it went on for some time and did nothing to ease our minds. At the end of it he said he’d quite like Louise to have a scan soon after the baby was born as they couldn’t do it before because it might hurt the child. I remember asking him in a jovial manner, ‘It’s not a brain tumour or anything is it?’ I smiled at my over-dramatic and paranoid question. And then he said, and I’ll never forget this, ‘No, in all the cases I’ve seen of Horner’s Syndrome over the last twenty years not one of them has been caused by a tumour.’ Well, you know, you win some, you lose some.