Shadow in Tiger Country

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 (#ulink_cb774fa5-f123-5474-bd45-6db56945c416)

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.

Two months or so later, Caitlin was born. What a birth that was! It all started off badly because we hadn’t prepared at all, so when Louise woke me up one morning to tell me she’d gone into labour I could still hear in my head our ante-natal tutor telling us ‘Make sure you’ve packed your bags well in advance of the birth date, just in case.’ Well, it was a couple of weeks after our due date and we hadn’t even thought about the bag. So we ran around like blue-arsed flies trying to gather all the stuff we needed. As is my wont in times of need, I headed for the fridge. All I could remember was that it might take a long time and a packed lunch was recommended. Louise came into the kitchen as her second contraction hit her. ‘Oof, there’s another one. You know what though, it’s not too bad.’ Off she wandered to find something or other and I delved back into the fridge for the ingredients of a Scooby Snack size sandwich. I saw Louise coming towards me down the corridor when her next contraction struck, only this time it was somewhat more powerful. In fact, it was powerful enough to floor her. The thump was loud enough to spook our cat, who bolted out of the cat-flap.

‘I knew it was going to hurt,’ she screamed, ‘but not this fucking much.’

It was then I realized that we were in for a bumpy ride. Louise grew up in a family where swearing is considered to show a lack of vocabulary, while in my family swearing isn’t even considered, it’s just what we do. Not that much, you understand, I don’t want to give you the impression that my folks are foul-mouthed in any way, it’s just that we can swear if we have to, with marvellous aplomb and panache. The point is, if Louise was swearing, it meant it really hurt.

We rushed off to hospital and after driving the wrong way for twenty minutes I eventually worked out where we were meant to be going, turned the car round and arrived there just in time to be told to go home for a few hours.

‘You’re hardly dilated at all, go home, have a bath and take some paracetamol,’ the sadistic midwife said.

‘Will the paracetamol help?’ a desperate-looking Weeze asked.

‘No, not really.’ And on that happy note we headed off for home.

It was whilst back at home that I made one of the biggest mistakes of my marriage. I put Louise in the bath and phoned up my dad to tell him we were on our way. He then came over. It was at this point that I thought it might be nice for posterity’s sake to get a photographic record of the birth. In her writhing agony Louise didn’t put up any particular objection to this. However, when the photos came back from the chemist two weeks later she was somewhat stunned at quite how intimate these pictures were. She was particularly gobsmacked when she realized that I was actually in half the pictures, holding my naked wife’s hand. ‘But, Tim, if you’re in this picture, who took them?’ For some reason knowing that they’d been taken by the man who’d been responsible for me being in the world didn’t appease her at all.

Anyway, when we eventually got back into the hospital the contractions were coming thick and fast and Louise’s howling was getting worse with every one. It’s strange how horribly useless you feel at times like this, times of pain and desperation, but I kept reminding myself and her that this was a good pain. Something I would have given anything to be able to tell her four years later. Weeze had always said she fancied trying to have the baby naturally without any anaesthetic. A neighbour of ours, Dorothy, heard about this a few days before Louise went into labour and said, ‘Why on earth would you do that? You wouldn’t have your leg cut off without anaesthetic.’ As it turned out, she had a good point. Louise put up with the pain for eight heroic hours and then eventually screamed for an epidural. I reminded her of her previous convictions and she looked at me with dagger eyes. So I called in the nurse and we got her nicely drugged up.

After this it was all plain sailing, we put some mellow music on and she still managed to push the baby out on her own. By 9 p.m. in the evening I was holding my little girl. Holding her like a cracked egg I expected to break at any moment, but holding her nevertheless, and I fell in love. I fell in love with this warm, snuffling creature in my arms and I fell in love all over again with my exhausted, serene wife. I was and still am in awe of the sheer ordeal that childbirth is. It is amazing, frightening and unbelievably exhilarating. I was one of those men who was flipped upside down by the whole experience. Watching Weeze feed Caitlin for the first time is an image that is somehow seared on to my soul. It was one of those moments that moulds and forms you into the person you become after it. From that second onwards your life changes, you go from being a boy and girl into a mum and dad. It’s a big step, bigger than anything Neil Armstrong took. Well, it blew me away, anyway. And then we were three, and at that time I still thought we’d be three for ever. But that wasn’t to be. There were other events about to enter our lives which would shatter our world.

We faced everything, we got through the twelve-hour operation, we got through the numerous treatments, Weeze even managed to kick her addiction to the heroin-like painkiller she’d been put on, we got through it all. And what’s more, we’d laughed, danced, hugged, made love, watched our child grow up and start school, and then it came back. Only this time there was nothing we could do about it. Our surgeon, Professor Gleeson, one of the most lovely men I’ve ever met, had to tell us both that that was it, there was nothing more anyone could do. We walked out of his office, walked down the corridor, walked down to London Bridge station, sat in a bar, quickly knocked back a brandy, went on to the platform, held each other, sobbed, then got on the train home, back to our daughter, our family, with the kind of news that is as painful to pass on as it is to receive.

Chapter 2 (#ulink_8c5df84c-a508-5b6b-8104-d781a6d47d30)

There was a strange sense of relief that went with the horror of the news. Every time we went up for one of the meetings every four months or so, both of us felt sick and nervous. We’d spend the hour-long train journey torturing ourselves about the best or worst case scenarios. But that day had surpassed anything we’d come up with. We suspected it was bad, that we were facing more chemo or radiotherapy. But Prof told us we had a year to a year and a half and that we should go off and try to enjoy the time we had left as much as we possibly could. And that’s exactly what we did.

We spent very little time feeling sorry for ourselves. We concentrated mainly on the things we wanted to do and how we wanted to achieve them. Louise wanted to travel a bit, which meant I had to get over my fear of flying, and she wanted to have some special days eating in restaurants she loved, wearing nice clothes, spend as much time with Caitlin as she could and, perhaps more difficult to achieve, she wanted to make her mark. Leave something behind that would be a lasting epitaph to who she was. It was about this time that we hit on the idea of the Internet diary. I had become an Internet convert several months before. One of our best friends, Gavin, had just started designing websites, Louise had always been fascinated by diaries and so we all put our heads together and came up with ‘Shadow Diary – a diary of terminal cancer’. Weeze was very specific about what she wanted from the site: she wanted it to be a place where she could vent her spleen and give an honest account of how she was feeling at each and every stage of her illness. She also wanted a place where she could exhibit her photographs and a place where others could come to talk about the illness and start a kind of web community. I think she achieved everything she’d hoped and a little more. By the time she died her website had had somewhere in the region of 300,000 hits and it still continues to go up daily.

She kept it up nearly every day and, as you’ll see, it became her way of sorting through what was going on in her own head. She was over-protective of me in many ways and so used the diary like a counsellor or a partner to chat things through with. She would examine things inside it that she didn’t want me to have to face, a thing I regret a little. Although we talked a lot and got through the experience together, I know there were bits of her that were frightened and anxious, bits which I let her keep inside or sometimes let her tell the whole world on the Net rather than talk to me. That may be why I rarely read the diary while she was alive. The things she wrote in her diary were the things her internal voice was saying, and I was afraid it would be too painful too handle. I couldn’t bear to know the mental torture that she felt at times. Physical pain I could handle, there were things I could do about that – I could call doctors in, I could give her more morphine – but sometimes I didn’t want to know where she was in her head, I couldn’t handle it. Weeze was my rock. I needed her to be strong and there for me, I couldn’t think of her not being my anchor. That’s not to say we couldn’t talk about the illness, we did, a lot. In the last few months when she stopped writing and became very depressed, we talked and talked, and that was the toughest time for me. Because what do you say to someone literally weeks away from dying, ‘Cheer up, it could be worse’, or ‘Come on, why the long face? You never know, it might never happen’? But, of course, it was going to happen and it did.

Weeze had a great ability to learn and it only took her a couple of hours with Gav to work out how to load her own entries on to the website and then, that was it, she was off. She sent her soul out into the ether and captured a world.

1 February

Big girls, they don’t cry-y-y (they don’t cry)

Big girls, they don’t cry.

If one more person tells me categorically that I’m not going to die I shall punch them. Now, I’m aware that this is probably misdirected anger and that I should be angry with the cancer, if anything, but honestly, it makes me want to scream. So – a friend of a friend of yours had cancer and they were written off by doctors and then they saw a homeopath and it just disappeared. Well, that’s just fabulous. A friend of a friend of mine won the lottery. But I don’t tell people who are in debt that a rational answer to their problems is to spend all their time buying lottery tickets. Yes, it may just go away. But the odds are that it won’t. And I’m damned if, having been given this warning, I’m going to die unprepared. I figure if I do a load of practical preparations over the next couple of months, then I can relax and live however long I’ve got left TO THE FULL. So. A recipe book for Tim. A few letters for Caitlin – ‘For When You Miss Me’, ‘For When You Get Married’, ‘For When You’re 27, Like Me’ – that kind of thing. ‘Dear Caitlin, please disregard all the times I read you Cinderella. Be nice to your stepmother.’ Weird. The usual wills and money stuff – ‘Please assist me (wink, wink) should I go bonkers when it enters my brain.’ Then once my ‘affairs are in order’ I can get on with the all-important tasks I have set myself:

To cuddle Caitlin as much as is humanly possible – how many memories do I have from when I was three?

To do as much photography as possible – TO MAKE MY MARK.

To try to make Tim as happy as he makes me.

Sometimes it’s so awful that I can’t bear to think at all. But sometimes it really is like the Travolta film, Phenomenon – life has such a wonderful intensity that I feel as though it is a gift, not a disease.

And with that simple entry she started a remarkable document. The last sentence was to become a theme of Weeze’s illness. She was very split between the higher state of reality she gained from facing death and the hard evidence of the price she’d have to pay for it. I remember walking around our local shopping centre, a hideous cathedral of consumerism. I had just been thinking how appalling the place was, how it sucked the life out of people, sending them into a shopping coma, when Weeze grabbed my arm and kissed me.

‘This orange juice, is unbelievable.’ She sipped again at the drink I had just bought her from M&S. Her face was lit up. ‘I can’t tell you what it tastes like, it’s just so – mmmm. Everything is so fabulous. Kiss me.’

She could find beauty in everything in life. I would occasionally find her crying and when I’d put my arm round her she’d just look up at me and say something like ‘It’s all so wonderful.’ I’m not sure how usual this kind of response to a terminal illness is. Although I was grateful for this for her, for me it just made the divide between us seem all the more wide. Dying is a lonely business, not just for the one dying but for those that love them. Because each person has to face the journey in their own way. I got none of Weeze’s optimism or joie de vivre. For me it was all bleak and dark and impenetrable. All I got out of the experience was the pain of watching and waiting.

5 February

I’m so tired. Yesterday I felt so tired that for a split second I thought of death in terms of rest. I doubt I’ll win any positive thinking points for that one. I got pretty down on Wednesday and thought – oh, here it comes, this is how you’re supposed to feel about dying, I must have been in denial up to now – but then it turned out that it was just PMS. I feel much happier now. Mind you, it doesn’t seem strictly fair that I should have terminal cancer and PMS.