Shadow in Tiger Country

A couple of times last week people have been over for dinner and the conversation has turned to how cynical the world is now, or how terrible politicians are, or how we’re destroying the earth, and I’ve felt really detached and almost bored – as though I can’t muster any strong emotion about it, because it’s not really my problem any more. I suppose I could be concerned about the world for Caitlin, but what will be will be, whether I sit and worry about it or not. I suppose that’s the case with everything really – and that’s why I’m not too depressed by this dying thing; I’ll either die or I won’t (well, in the near future), but whatever happens I will cope in some way, because that’s what happens – people get ill and die all the time and life still goes on for everybody else. I don’t see that it’s such a huge thing, really; everyone dies and just because we as a society can’t deal with it or even talk about it, doesn’t make it any less natural.

I spent most of today waiting for a phone call from a doctor in Sheffield who has something called a gamma knife. So far he’s the only person who has shown any signs of wanting to talk to me about treating me – but he didn’t ring. He’s got all my scans and treatment history, but he’s going to Australia next week for a month. I really hate waiting for news. In a way I’d rather he rang and said he couldn’t treat me than just didn’t ring.

Song for the day: Who Wants To Live Forever?’ By Queen.

Waiting for results or phone calls was the hardest thing over the years of her illness. When she was first diagnosed we had the agony of waiting to see if anyone could do anything. After the operation we had the anxiety of waiting for the re-scan results. Then every three months we would have to travel up to Guy’s Hospital in London where Prof Gleeson would examine her and give us the all-clear or not. These regular check-ups were the worst. Weeze and I would both know we were getting close to one because we’d start getting nervous and we’d stop talking about her cancer. As if, if we talked about it, it might be there next time the Prof looked up Louise’s nose.

During her remission we must have been up to Guy’s twelve or so times, and it never got any better. In fact, the further away we got from the operation and the further we were into her remission, the more frightening the trips got. Partly because we knew that they’d been unable to remove all of the cancer and so it was only a matter of time before it came back and also because the longer it went on the more we got back to a normal life and the more precious that became. Enjoying watching Caitlin grow up, Weeze’s amazing flourishing of her photographic talent, me getting on with writing and directing – life was good and neither of us wanted that taken away. I personally got very jumpy and hyper before the meetings, wanting to bounce around like a rubber ball, but Weeze would get very calm. This was always the way with us in times of stress, I got loud and over-excited and Louise turned into some kind of Zen master.

My bowels were the thing that always took the full brunt of my nerves. I have suffered from IBS ever since this thing started. I remember one time with absolute horror. We were waiting in the hideously depressing old waiting-room to get our results from the Prof. We’d timed it badly again, as we always did. The Prof is a marvellous man who takes his time with his patients, which when you’re in with him makes you feel like you’re the most special patient in the world and that he’s there just for you. However, when you’ve been waiting for three hours, because each appointment is five minutes long but he takes half an hour with each, it is difficult to keep your nerves in check.

‘I’m just popping to the loo, won’t be a sec.’

Weeze nodded sagely at me and got back to her Cosmo.

Now, the toilets at Guy’s are somewhat less than pleasant and as I pulled down my trousers to evacuate my bowels – by the way, skip forward a bit if you’re of a nervous disposition, this does little to further our story, it just made me and Weeze laugh. Well, Weeze laugh really. Anyway, I looked down at the toilet seat and somehow couldn’t bring myself to sit on it. I’m a hypochondriac on a minor level, and looking down at that seat and knowing all the potentially disease-ridden people that had sat on it, I just couldn’t bring myself to. But I knew that I only had seconds to go before I exploded. So I decided to perch somewhat precariously above the seat. What I hadn’t expected was the force with which my nerves would project my bowel movement. I swear there was a bang as it left me. I turned round and there it was, all over the seat, the cistern, the back wall of the toilet. As if I wasn’t feeling bad enough, this had to happen. I spent twenty minutes in there cleaning it all up. I nearly threw up a couple of times. The only good thing was it took my mind off the meeting, but that was small recompense. When I eventually emerged, I was weak and pale, and Weeze asked me what had happened. When I told her in my best pathetic voice, expecting a hug and some sympathy, she howled with laughter, and the more I tried to explain the horror of it to her, the more she laughed. So when we eventually went in, both of us were giggling like kids and Prof Gleeson said, ‘Nice to see you two in such fine form.’

That was a bit of a pattern in our relationship. I’d make a fool of myself, she’d laugh, then I’d laugh, then we’d keep laughing until we’d forgotten what we were laughing about. Damn, I miss that.

6 February

I’m floundering somewhat. It’s like: ‘Ladies and gentlemen, your world is about to end. In the meantime do not panic as normal service will continue. Kindly go about your daily grind and restrict your “freaking out” to designated times and places. Do not request more information, as none is currently available. We thank you for your attention and have a nice day.’

I was cooking dinner this evening and desperately wanted to just leave and walk away from everything. As though if I don’t see another doctor ever again I can’t die, or as though if I don’t have to die in front of Tim and Caitlin it won’t hurt us.

For days I’ve been wanting a rest from the constant stream of visitors and going out to dinner, but tonight it felt so strange to be in. I kept hearing clocks ticking. All I could think of was that I really ought to do some ironing, but it just seemed so ridiculous to even consider spending one of my precious evenings ironing that I … watched nothing in particular on TV, too tired to get up and go to bed. But here I am now, in bed 11.16 p.m., feeling as though writing this is the most constructive thing I’ve done today. At least here I’m attempting to unravel my feelings and make sense of – well, at least some part of it all.

Maybe Glen Hoddle and his ilk are right and I did something ghastly in my last life or my soul chose to have cancer in this life to learn some vital lesson that will help me grow as a whole, or maybe there is no reason and it’s just how it is. Or even if there is a reason, we don’t/can’t know it, so it doesn’t matter. Probably I should just learn to be with whatever this throws up and enjoy the rollercoaster (man).

Well, that’s worked off some of today’s angst. Over and out.

When Louise got ill first time someone told us about Deepak Chopra, a New Age guru who believes that we can heal ourselves. No sooner had we been told about him than we found out he was speaking in Kensington. This we thought was obviously fate, it was too much of a coincidence – maybe this man would show us the way forward. We sat there and listened to him talking for two hours. He sure is some speaker – no notes, charisma coming out of him like a steam train, washing over the audience of devotees – and every single word he said drove Weeze and me crazy. It is entirely possible that we were what our New Age friends would call ‘unreceptive’ and possibly we were ‘blocking’, but the message that came over loud and clear made us furious. If you love yourself and those around you enough, you will live. And you cause your own illness. Now, let’s get this straight right up front. This is rubbish, shit, and it’s evil. Louise didn’t hate herself, didn’t have any deep-seated self-loathing, wasn’t abused as a child. She just got ill, her body just did it itself. All this kind of thinking does is set up a pattern of guilt and accusation. People have got to realize that people die, sometimes they die young, and sometimes no matter how sorted and spiritually in tune they are with the universe they still die. We all die. Frightening, isn’t it? More of this as we go on, but I thought I’d just put in my first firing shot across the bows of this kind of stupidity.

7 February

Today was a far, far better day. Possibly because it was sunny. When I stare into a blue sky I can feel myself lifting – it’s the best drug – especially after it’s been dark and gloomy for a while. Also a nice walk with Tim and Caitlin and then some photography work – press pictures for The Cherry Orchard – where I felt in control and comfortable. Got offered three more jobs – one of which I turned down – but great – people really seem to think I’m a good photographer now. Typical. I finally discover something I adore doing and am good at and then I have to go and die. If I really want it enough, will that keep me alive?

9 February

Yesterday Prof Gleeson called to say that ‘The Doctor’ in Sheffield had looked at my scans and decided that he couldn’t do anything. It felt really odd. This guy had told Gleeson that he would definitely talk to me and was really sure he could help. Then he looked at the pictures of the tumour and realized he couldn’t. I feel like it is definite now, confirmed. There is nothing that can be done. And I just don’t believe in alternative medicine. I am taking the vitamins recommended by the Bristol centre to keep me as healthy as possible and to help me deal with the extra stress, but I don’t expect them to cure me. I shall live or die as fate decrees.

Yesterday Tim bought me a book of love poetry and I cried a little whilst reading it. We haven’t had enough time together yet – seeing old couples makes me sad.

I spoke to the hospice today for the first time in two and a half years. A counsellor is coming over to talk to me and Tim on Thursday – mainly to talk about Caitlin. He was very nice on the phone and said I was being a really good mother by thinking about it now – apparently a lot of people can’t bear to think about dying until the last minute when they then blurt it out to their family and it is more traumatic than it could have been.

Last night I was convinced I could feel it, growing inside my head. I’m sure I can’t really – I don’t think there are many nerves there. I think I was just imagining it.

This morning I woke up and it was snowing. I got to see Caitlin’s face when she looked out of the window and then dragged me out of the house to play in it. Each day of my life is worth a year of a life with no one to love. It is 5.30 now and I’m looking out of the window and it’s so quiet. I think the sky is the most beautiful thing; it’s the thing that can always lift me out of myself, no matter where or what. When I die I want to be looking out of the window.

Snow is a beautiful thing, which wraps the world up and makes everything look new and fresh and different. We both loved it. Before Caitlin came along, when we could still just leave the house in the middle of the night and go for long walks, one of our favourite things was walking late night in the snow. I remember taking Weeze out for a Valentine’s meal the year after we got married and while we were in the restaurant a really heavy snow hit Tunbridge Wells. We were lucky to get the car home. We sat on our balcony, all wrapped up with hot chocolate in our hands, and watched it silently cover the town. It was perfect.

At about two o’clock in the morning we decided to walk round the town. The whole place was deserted, pavements and roads were indivisible under the whiteness. The parks became featureless and muffled. The whole experience was ours and ours alone. We didn’t see one other person, not one car, and for those couple of hours we owned the whole town. It was a magic Winterland. We held gloved hands and then, needing the touch of skin, faced the cold and took them off to hold each other without any interference from cloth. We kissed, we laughed, we ran along the roads having sliding competitions to see who could slide the furthest. Weeze always won, because she had little regard for her own safety, and she would hurtle along the road before planting her feet and skidding yards. More often than not she’d go flying over on to her bum, but she didn’t mind that – that’s the advantage of snow, it cushions the blow.

We had done a huge circuit of the town and were just about to turn into our road when we met our only fellow traveller that night. A beautiful deep red fox poked its head out of a hedge not more than ten feet in front of us. Neither of us spoke, worried we’d spook it, we just followed it in silence up the road as it darted from one side to the other looking for something – food I suppose, but it felt very like a scene from Alice In Wonderland or one of the Narnia books. It could have been looking for treasure or a magic key, its curiosity and considered nature making it look quizzical, very human. It headed in and out of people’s gardens and finally, just a few feet away from our house, it turned, looked at us and lifted its head, sniffing the air. It then lolloped away across the park next to our house, disappearing into the night. Still without talking, we made our way to bed and made love until the dawn light crept in through the window and we slept.

14 February

So. We were going to be in New York now. Valentine’s Weekend with the coolest reservations in the coolest restaurants, tickets for the Late Show, Woody Allen’s jazz club, backstage tours of Broadway musicals … it really couldn’t have been more exciting. And instead a morning at Heathrow hearing about striking pilots of American Airlines. We were offered a flight that left ‘at least’ eight hours later and no guarantee of getting home on time. Squandered half of our re-converted dollars on a really marvellous meal at the Criterion – foie gras and Dom Perignon. Then wandered around miserably for hours before returning home, flatter than the proverbial pancake.

I really can’t believe our luck I mean, what the hell am I doing wrong?

This was a big blow. I am notoriously frightened of flying and travel, ever since our honeymoon, and it took all my strength to face this trip. It was one of the things that Weeze really wanted to do, one of the things she wanted to tick off before dying, and because of a stupid airline fuck-up it was screwed up. I think it was the disappointment and the anti-climax which led to my minor meltdown that night. As we walked round London at night the enormity of what we were facing slowly dawned on me. We walked down through Whitehall and down to the river, just chatting about it all, about how strange life was and how sad it was, and then I was crying, crying and crying, and Weeze was cradling me in her arms, the smell of her soothing me. She stroked my hair and kept telling me it would be all right.

‘Who knows, maybe I won’t die. Although I’ve got to be honest, it doesn’t look that great, does it?’

I wanted her to promise me she wouldn’t die. Stupid, I know, but I felt like if she would just say it, just swear to me that she wouldn’t die, then she wouldn’t. But, ever the grown-up, she looked at me and said, ‘I can’t promise that, my sweet, I just can’t, but I promise you, you’ll be OK whatever happens. You won’t collapse, you won’t have another breakdown, you’ll be fine. You have to be for Caitlin. It’ll be OK’

That was enough to calm me, as it always was, whatever happened to us, however I felt. Weeze would just tell me it was OK and I’d believe her. Talk about a mug. But it’s these words that are keeping me going now, after she’s gone. I can hear her telling me I’ll be OK. I pray she’s telling the truth.

21 February

Yesterday was my little sister’s birthday. She won’t speak to me unless I apologize to her husband for asking her if he hit her. Bearing in mind the fact that she had bruises on her face and her husband refuses to meet any of our family, I figured it was a legitimate question and can’t quite bring myself to apologize. I have asked her to make peace with me because I am ill and she said my illness wasn’t relevant and she wasn’t interested. I worry that if I die she’ll feel bad for the next sixty years because she wouldn’t speak to me, but I don’t really miss her in my life. It’s strange because when we were young we were really close.

25 February

I read something that helped me to feel all right about my sister. It was in an interview with Oprah Winfrey, of all people. She said that for years she had thought forgiving people meant ‘embracing them and inviting them to dinner’, which she just couldn’t bring herself to do. Then she was told it meant to let go of any hope that the past could be different. I think that’s the key with my sister. Forgiving her just means letting go of the hope that she will change.

I have recently read something else – this time something that made me really, really angry. Someone sent me a book called Mind Over Cancer by Colin Ryder Richardson. The person who sent it to me is very nice and wanted to help, and hadn’t actually read it, but anyway, here are two choice quotes:

‘Young children with cancer are only young persons with stresses similar to adults. Here one should look towards the parents for the cause of the cancer. Has the child been rejected or fought over by the parents? Is the home or school environment bad? Is the child bullied or torn emotionally in some other way? A husband or wife may be locked in an endless war at each other’s throats. They are the cause but the child suffers by being unable to live a healthy life in such an acidly cancerous place even though it is called home.’

‘Perhaps you are young and have breast cancer – so why have you got this illness? Have you been on the pill? Have you had affairs of the heart too often? If you are a mother, have you naturally breastfed children? Has your past life been totally blameless? Haven’t you somehow abused yourself sexually? Most cancers are preventable and are found mainly in persons guilty of self-abuse.’

Can you believe it? Can you imagine having a child with leukaemia and being told it’s your fault? Or being told you’ve got cancer because you didn’t/couldn’t breastfeed your children? Amongst my friends I know that those who have problems breastfeeding feel guilty enough as it is, without this kind of judgemental crap being bandied about. It is true that the author tells people not to feel guilty for past mistakes, but then writes things which seem specifically designed to inspire guilt.

A word of advice here for anyone who knows anyone with cancer or any other illness – really think about the stuff you give them. Read any books or leaflets you give them. Take time to think about how they will receive them. It is far better to just not give them anything than feel like you have to help and give them the wrong thing. I know from time to time Weeze did look at her life and tried to see if there was something in there that could have given her cancer, something she’d done, or hadn’t done, even though she was a totally rational good human being. I hate all those who put this crap out for just this reason – I wouldn’t have had her feel bad about herself for one second.

To be fair to Mr Ryder Richardson, I understand that all his writings come from the fact that he believes he cured himself of cancer and that he believes he has a responsibility to pass on the valuable insights he’s gained. And that’s fine and so here I feel it is important for me to tell the world the insights I’ve gained. All these people who produce such nonsense are either liars, fraudsters or severely delusional. That’s what I honestly believe and I think it’s empowering for people with an illness to face up to this possibility. If you can’t and you need the support that you can get from these people, then that’s great. You must do whatever you can do to feel good about yourself and feel as positive for as long as you can. But whatever you do, don’t beat yourself up, don’t examine your life looking to apportion blame. No good can come from that. The past is the past – if you’ve only got a limited time, then live it, and that goes for everyone.

26 February

My mother was talking to me about God the other day, saying that if I believed in God it would make me less afraid of dying. But I’m not really afraid of dying – it’s all the stuff beforehand I’m worried about. Besides, I find the idea of a secular sleep a lot less scary than judgement.

Chapter 3 (#ulink_e376d0a7-7c49-5e58-b8b0-4103aa3cf0d2)

10 March

A strange week. Since I last wrote a lot has happened. A meeting with my surgeon went well – we talked about cameras, cancer and God – you know, the usual stuff.