Shadow in Tiger Country

There is a guy at Bart’s Hospital who has agreed to talk to me about radiotherapy treatment, so Tim and I are going up to London on Friday to talk to him.

Meanwhile I’ve started getting a few symptoms, which has knocked me a bit. I get a sharp stabbing pain in my head and some balance problems. The most disheartening thing is my loss of taste, as chocolate and champagne have been my main sources of consolation for the last couple of months. Still, maybe I’ll lose some weight, as food is far less interesting to me at the moment.

It’s far easier to be flippant about dying when you don’t feel ill. Since the weekend I’ve been a little down. I think I had thought I would have no symptoms for a little longer, and don’t really feel ready to start getting ill yet. So, I thought I would get some of the practical details done quickly and I re-wrote my will yesterday. Slightly more freaky is what I’m doing tomorrow: visiting our local crematorium/cemetery to check out what kind of funeral I want and possibly even to book it or pay for it or whatever you do. It’s something I want to do so that Tim doesn’t ever have to sort out the details. I thought I’d do it now because if I wait much longer I think I might lose my nerve. I’m going with a friend, as I think going with Tim might be too heavy.

12 March

Yesterday I booked my plot at the cemetery. Very strange, but I got quite excited. Not like buying a house or anything, but still, location, location, location. The old stone chapel is very picturesque, if a little small, and the plot I’ve chosen is great – between a huge tree and a bench, so Tim and Caitlin can sit and talk to me. The guy said for an extra £60 I could have it dug deep enough for two, which sounded reasonable so I went for that, which I think freaked Tim out a little. I’ve decided on a burial instead of a cremation. I’ve been to both and I always think cremations are a little like registry office weddings – ugly buildings, no sense of occasion and another load of people queuing up to go in as soon as you leave. Also, on a more serious note, I think seeing a coffin being lowered into the ground is so final that it is easier to let go and grieve. When I was six my grandmother died and I had a dream about her being burnt in our sitting-room fireplace that was so vivid I can remember it now.

I’m currently on a train going up to Bart’s Hospital to talk to the radiologist there. I have no idea what he thinks he can do for me, but I’m trying not to get too excited. My mood is a little suspicious, though, too ebullient for my liking, so if this meeting isn’t any good, I fear the next entry may be somewhat miserable. I came out of the house this morning singing ‘We’re off to see the wizard, the wonderful wizard of Oz’, so goodness knows what my subconscious is expecting today. Oh well, Tim wants a go on the computer to play ‘Snood’, so I’ll sign off. Pip, pip.

Unfortunately, or perhaps fortunately for my lawyer and publishers, I can’t remember the doctor’s name that we saw at Bart’s that day. If I could, I’d plaster it all over here in big letters, give you all his address and phone number and warn the world about him. But as it is, I haven’t got the foggiest idea what it was.

We got a taxi from the station and held hands all the way. However much you try not to get excited about these things, you always do. In the face of death you find yourself grabbing desperately at anything which might help. There’s also a large area of denial – as you walk through the doors of the hospital with your wife, you just know that someone somewhere will be able to help. They have to be able to. The person you know, love, hold, kiss, can’t just die on you, someone has to be able to do something. But sometimes nobody can do anything. There was some kind of record sale in the foyer of the hospital and I flicked through the world music stuff while Weeze found out where we had to go. She came and dragged me away and we were led to a waiting-room. Doctor X was on the phone in his little cubicle.

‘I know, I know, it’s amazing how many of them come over here and then get ill. You’d think they do it on purpose, they get here, get all the privileges of diplomatic immunity and then they want us to pay for them to be ill, I mean really. Anyway, this one’s got a nasty shock coming. Ha ha, yeah, it’s terminal. Nothing we can do about it. Look, gotta go, yeah, yeah, sure, see ya Saturday.’

More laughter and then the conversation was over. A middle-aged greying man in a white coat appeared from the door and beckoned us in. I don’t know why, it may be my own prejudices, but I took an instant dislike to him. It could have had something to do with his last conversation, but it was more than that, something to do with demeanour. He was what I’d call an old-fashioned doctor, not a doctor who believed he worked in partnership with the patients but who believed that he was the boss and you were lucky to be seeing him and he’d do whatever he thought was best for you. Worst of all for me, he had no knowledge of Weeze’s case. He asked her a whole host of questions before saying, ‘You had radiotherapy before, and at that level, well, you can’t have any more. I don’t know why you’re here to see me.’

He then proceeded to look, for the first time, at her scans. He flicked the large plastic sheets up on to the light box and gave them the quickest of glances, shaking his head all the time. ‘No,’ he said, in a very matter of fact way, ‘it’s very bad, multi-site disease, I can’t help you.’ He then took the scans down, put them back in their envelope and handed them over to Louise.

‘You might as well keep these, the NHS will only lose them’.

Then, shell-shocked, we wandered down endless corridors, back out into the light. Weeze looked at me and said, ‘Well, I guess that’s it then.’

I was destroyed. A lot of people over the year kept saying to us ‘You must have hope, hope will keep you going.’ The fact is that hope can be incredibly painful, especially when there is no real hope.

Of all the doctors we met during this process, and there were a lot of them, this guy was the only duff one. But, boy, was he an arsehole. And in one ten-minute meeting he nearly tainted all our experiences with the medical profession. Nearly, but not quite. The doctors we got on with the best and still look on as great physicians were the ones who treated us like equals, like intelligent human beings capable of understanding what was going on and capable of making decisions for themselves about what treatment to accept.

Our GP, Clive, and the Prof made that last year and the whole time Weeze had cancer so much easier because they made us feel part of the team looking at her illness. Her opinions were as valid as any other member of the team. She was allowed to weigh up the pros and cons of treatments and procedures. It should also be said that this was largely due to Weeze’s attitude herself. She always respected the doctors she had but was never in awe of them, never thought of them as being anything but people with specialized knowledge which could or couldn’t help her. A very healthy attitude to have towards your doctors. I was at college with enough medical students to know what they’re really like. Let’s not put them on a pedestal, they’re just people doing a job – it’s your body, your illness, don’t be pushed or bossed into anything you don’t want. That having been said, our guys went over and way above the call of duty for us. They gave up private time, they were always available and they did everything humanly possible to make Weeze comfortable. For that I will always be eternally grateful and will always hold them in my heart. There’s not an ounce of me that thinks any more could have been done for Weeze, and if it hadn’t been for that idiot at Bart’s I’d have had nothing to complain about at all.

14 March

Mothering Sunday

A really great day but tinged, as they say, with sadness. Like, possibly my last Mother’s Day, another day on the calendar for Caitlin and Tim to miss me lots, etc., etc., etc. It was a great day, though. Tim’s brother, Jay, his wife Lou and their children, Rowan and Holly, came down from London and all of us and Dave, Tim and Jay’s father, went to the Ashdown Forest for a picnic. The girls were excited because it is the Hundred Acre wood of Winnie-the-Pooh fame and had a great time because it was so warm and the views are great – so much space, you feel yourself relaxing and breathing more deeply.

15 March

It’s a sunny day and I feel fabulous. Have decided that today, for one day only, I don’t have cancer. I have been singing and spring cleaning and remembering the countless times I have cleaned this kitchen whilst listening to the Mamas And The Papas or some other such sing-a-long music, back doors open and sun streaming into the house. I could be twenty or sixty and the day-to-day of my life would probably be the same. However long you live, if you’ve had a life, it’s OK. That doesn’t sound like it makes sense, but I mean that I think I’ve lived long enough to know what life’s about.

This was my Weeze! This was how I hope to remember her in the years to come. Not cleaning – because however many times she said she did it, neither of us were brilliantly tidy people – but in the kitchen, dancing. It was our favourite pastime. The hours we spent kitchen dancing must run into weeks. Kitchen dancing for any out there not familiar with it is the kind of dancing you do on your own, only you do it with your loved one in the kitchen with the music playing very loud. You do all the movies you’ve seen John Travolta in or ballet moves or slow smooching or anything you feel like. I can’t recommend it highly enough – it’s one of the most life affirming things I can think of.

22 March

Looking back over this diary, I am worried that it might look as though I spend most of my time brooding on dying and feeling irritated by people. It’s like when I wrote diaries in my teens – when I am busy and happy I don’t think about writing, or I am too busy to write, and then when I look back it looks as though I was miserable for six years, which isn’t remotely true.

So in this entry I want to set the record straight. Now is a good time to do it, as I am sitting in Caitlin’s room waiting for her walls to dry and feeling fabulous. Tim and I are painting her room while she’s at school. It is a really sunny yellow – like Cornish ice-cream. Painting it feels like slapping custard on the walls. I want to make her room really fun – we’re doing handprints of all three of us on the walls next and writing our names and odd happy words around the edges.

Today I spoke to an old school friend whom I haven’t seen in years and she couldn’t think of anything to say to me. She said, ‘Normally I would say look on the bright side, but there isn’t a bright side. There just isn’t a bright side, is there?’

Well, Amanda, yes there is.

I have a really cool life. I live in a big house next to a park with a playground in it. I have tons of the most supportive friends I can imagine – friends who do so much for me (Jane and Uschi, I’m so lucky I have you) – friends who I know will look out for Tim and Caitlin always. My family is also fabulous – I would trust mine and Tim’s parents with Caitlin for ever, and I have two lovely sisters who are great to talk to.

If I died tomorrow I would have still known more love in my life than most people experience in eighty years. I still consider myself a really lucky person. And, weirdly enough given the circumstances, I think a lot of my friends still consider me lucky. To be honest, I would rather be dying than be married to someone else or have a different child. So I can’t be unhappy with my lot. If I had the chance to throw away my cards and get a new deal, I’d still play the hand I’ve got, because highs and lows are better than a healthy life without love or the ability to appreciate the wonder of it all.

Now that’s enough schmaltz for now, so I’ll sign off.

One last thing, though – if people can’t (and they generally can’t) think of anything to say to me, I wish they’d say ‘supercalifrajilisticexpialadocious’. I would laugh my head off if someone said that to me.

And loads of people did say that to her. As soon as that message went up on the website she got loads of guest book messages and emails which said exactly that. And she did laugh. By this time the site was really taking off and she was bowled over that people wanted to read what she had to say. Although she always wanted to write and leave a mark, for a few weeks when she started writing her diary it was very much for her, a cathartic process. But as time went on and more and more people were logging on daily to check on her progress, she began to write for her audience. She felt she had a responsibility to continue it and to be honest about how she was feeling. We had long debates about what the website was for and whether or not she could really be honest on it, and whether or not it was a valuable thing to be doing or mere voyeurism. It was a debate that continued right up until the end of her life and when she got particularly depressed towards the end she sometimes regretted she had ever started it. She looked back on previous entries and felt so different, so somewhere else, that she began to doubt how truthful she’d been earlier on in the diary. But going through it now I know she was honest about how she felt on any particular day, and I am proud of her for it.

24 March

First evening alone for ages. And I can’t stop crying …

Chapter 4 (#ulink_beaff116-3d28-5b03-bba0-46476c9055ee)

1 April

Tim and I returned from New York the day before yesterday, having had an amazing three days. As our original Valentine’s weekend had been cancelled by the airline (strike), we were compensated with first-class upgrades on the flights and a suite at the hotel (overlooking Central Park). Talk about how the other half lives. It was great. We saw a huge Broadway musical, Ragtime, went backstage at the Late Show (halfway round the world to see Blur!), and saw Woody Allen playing with his jazz band in a club – the highlight of the trip. Tim bought an entire suitcase of clothes and I discovered that my bum is the same size in England as it is in Saks Fifth Avenue, so bought things like stationery and camera stuff – some gorgeous paper from Cartier and playing cards from Tiffany’s.

Although I got pretty exhausted and my ear hurt on the flight, one of the best things for me was that I really felt that I was having a holiday from having cancer. I felt like a tourist having a really romantic weekend, far too busy to think about much at all.

Caitlin had a great time here visiting new-born lambs and things and apparently didn’t cry once! So no guilt either! Home to something of an anti-climax, but at least the weather is nice here. Next holiday is France – all together.

One strange thing: flying back from New York I was looking out of the window and saw us flying from sunset to darkness. We were high above the clouds and over the sea and could see nothing but golden orange fading into deep blue, then blackness. I suddenly felt stifled and desperate to turn back into the sun, as though I were dying.

New York was an incredible time for me, I loved it. Yes, it’s true, I love New York. Just overcoming my fear of flying to get on a transatlantic flight was quite a big step, but actually getting in the limousine at the other end at JFK and driving across the bridge into Manhattan was a buzz and a half. As Weeze said, as compensation for the last aborted attempt, we’d had nearly everything on the trip upgraded. For those of you who haven’t flown business class or first class, it is simply fabulous! Especially, I guess, for a luxury travel virgin like myself. Why? It’s the big seats – they’re like beds. I swear I felt refreshed when I got to New York, not tired and filthy as if I’d just travelled in a cattle truck, as I normally do. But why the fear of flying?

OK, picture the scene if you will. Weeze and I are on our honeymoon, nearly everything that could go wrong has and we’re both sick as parrots. We cut short our cruise down the Nile and decide to fly back to Cairo to just rest up in a nice hotel. Well, on the way from the boat to Luxor airport the taxi breaks down in the middle of the desert. This I should have spotted as a bad omen. The massive fat man driving us turns round and says, ‘I don’t know what’s wrong, you better push.’ And he’s saying that to a couple who’ve been throwing up non-stop for ten days, for whom just staying conscious was a difficulty. But being a good English couple, rather than saying ‘Sod off, you’ve got to be joking’, we crawled out of the cab and began to push. It was so hot, and such hard work to push this taxi and this huge man that I thought one of us was going to collapse. I had visions of us pushing all day and night and having to drink the fat man’s sweat as a method of survival. Luckily, none of this came to pass. Within two minutes another taxi passed us, we hailed it and jumped ship, leaving the fat man to fend for himself. For all I know he’s just a skeleton sitting in a taxi in the middle of the desert now.

So we eventually got to Luxor airport only to find that there was no air-conditioned waiting lounge – people just sit round in the heat and get sun stroke – and to be informed that there was no plane for us. Apparently, and I quote, ‘The engine fell off your plane in Cairo, so we are without a plane.’ Well, call me an old stick-in-the-mud if you like, but I didn’t find this terribly reassuring. And I didn’t feel a lot better when they told me that there was a plane going up to Cairo that wasn’t scheduled to be taking passengers but we could hitch a lift on it if we wanted. Louise had just come back from the toilets for the third time and said she just needed to get out of there, so we headed for the plane. From the outside it looked like a normal plane, but on the inside it was a different story. There was food and litter everywhere and the air hostesses looked at us in horror as we boarded, desperately trying to tidy themselves up, applying make-up and buttoning up blouses.

‘I don’t like this, this doesn’t feel right at all,’ I said and, as if to put a further jinx to the whole flight, I added, ‘That’s exactly what people say on the telly – there’s always two people who decided not to get on Death Flight 110 because they had a strange premonition about imminent disaster.’

Weeze shook her head and said, ‘It’s this plane or the old woman who won’t give me enough toilet paper back in the hell hole of a toilet. I’m taking the plane, you do what you like.’

So off we set and everything was going fine for a good twenty minutes. I was looking down for the first time at the beauty of the desert. Images of Peter O’Toole on the back of a camel floated through my mind and then we suddenly dropped five hundred feet out of the air. One second the engines and the wings and all the little flashing lights and knobs had been keeping us airborne, the next minute we were heading for the sand. My stomach, which I’d left some five hundred feet above, took a good few seconds to catch up with me. I turned to Weeze and managed to say, ‘Fuck me, that was a bit scary, what …’ when we hit another series of turbulence pockets, the plane dropped and bounced all over the place and I started to freak out. Singing and laughing as loudly as I could, I tried to remember all the names of the Egyptian gods we’d heard about on our travels. ‘Horus, erm … Horus, ermm, Amon, Ra, ermm, look any of you, help me and I’ll believe, I promise, I’ll believe, and I’ll make others believe, please oh gods, please help …’

Weeze, on the other hand, always became calm in the face of adversity and with Zen-like peace she whispered to me, ‘Tim, we’re all frightened, now keep it down a bit.’

At this point the captain came on the tannoy. This was what I wanted, news from the man in charge that things were OK. What I’d hoped for was a very upper-class BA pilot saying, ‘I’m terribly sorry, ladies and gentlemen, it’s the teensiest bit choppy up here, but we’ll soon pass through it and Jeeves will bring round the Earl Grey tea.’ But this was not BA and what we got was an Egyptian pilot who sounded more scared than I did: ‘It very bad, we try to get out of it.’

At this point the plane went into a severe dive. I could see the dunes getting closer and closer and closer and at what I assumed must be somewhere near the last minute he pulled out of the dive, levelled off and we proceeded on our way more or less without incident. I was so petrified by the experience that when we landed I found myself not only unable to clap and cheer along with the rest of the passengers, but unable to walk. I stood up and found my legs had turned to jelly. Much to Weeze’s amusement, I weaved my way down the aisle like a drunk man.

Ever since then, flying has been a somewhat nerve-racking experience. Except in first class on the way to New York. That was a dream and Weeze was stunning all weekend. She was radiant, gorgeous and – most importantly – alive, really alive, glowing, absorbing every experience. We did the whole Big Apple thing, we went up the Empire State Building at night, wandered round Times Square in the rain, went to the Metropolitan Opera House – it was all so New York.