‘I’ve messed everything up,’ I told her. ‘And I’ve been told off twice. I know when I’ve ruined things.’
(I’d actually only been told off once by Dad, but I thought Mum was going to as well when she came in to see me so I added that in.) But then Mum told me not to worry and that Dad was fine – everything had been cleared up and no harm had been done – which is when I got angry again. I knew Mum was trying to make me feel not too bad, which was nice of her, but everyone has to feel sorry sometimes and so do I. It annoys me when people treat me differently and that’s why I didn’t like Mum doing it because one of the best things about my family is that I’m normal to them which makes up for all the people who give me the Chitty Chitty Bang Bang look. Remember how scared the baroness was when the children took over her castle? How she screamed at the sight of them? Well, that’s how some people look at me and it’s the worst – worse even than when Dad gets a face like thunder if we interrupt his rugby game on TV – and the reason I hate it is because I know the person giving it to me doesn’t see me as a normal teenager.
Now I know I’m not exactly average: I’m thirteen and I’ve been in and out of hospital all my life. But the Chitty Chitty Bang Bang look tells me I’m abnormal, and while I know I’m a bit different I’m not a total weirdo. That’s why I like my mates so much because they never look at me like that, and that’s why I got so angry when Mum tried to make me feel better because it made me feel like it does when a teacher gives out homework at school before saying to me: ‘Do as much as you can.’ They usually say it quietly but even if everyone has left the class I reckon people are still in the corridor so they can hear. When a teacher says that I’m like, ‘Whatever! I can’t run a race but I can do my schoolwork.’ (Actually, I don’t say that but I shout it in my head.)
It’s not that I want to do homework or anything. In fact, I hated homework from the moment I started going to school when I was nearly ten. I had not been to school since I was sick as a little girl, and me and homework didn’t get on because when I got home it was dinner time, TV and bed. There was no time for homework and I don’t understand why kids have to do it anyway because we’re at school for more than half the day which should be enough. But even though I hate it, I hate it more when a teacher makes out that I don’t have to do it because I don’t want to be treated any differently to anyone else.
So I was still angry when Mum left my bedroom and Dad came in to say goodnight. But then he told me he’d had a nice time and I promised I wouldn’t throw napkins again when we went out, so I felt better. And I know it’s good that Mum and Dad tell me off even though it’s bad, if you see what I mean. It shows that they’re not going to tiptoe around me like some people do. It’s always been that way, and although I can’t remember much about being in hospital with leukaemia Mum has told me that she even got cross with me back then because I kicked a doctor. I couldn’t believe I’d done that! But she’s right to get angry sometimes because if people were nice to me all the time I’d have them wrapped around my little finger. I’d be able to do exactly what I want and there have to be rules otherwise I wouldn’t get anywhere. Things would also fall apart in our house because there are four kids here.
It’s a bit like Wind in the Willows when Badger tries to get Toad out of his obsession with cars. Toad is doing all sorts of stupid things and Badger tells him it’s got to stop. But Toad doesn’t listen so they lock him up in his room and he climbs out of the window, escapes and ends up in prison. It’s not until near the end of the book that he realises Badger was right and he was wrong.
The problem is that Toad doesn’t have any discipline, and look where he ends up. He has to learn that there are different kinds of discipline too: the bigger one that stops you from chucking napkins around because other people will get angry and the smaller one that stops you from doing things which aren’t good for you. I had to learn that one when I first came out of hospital after saying no to a heart transplant because while I was in bed most of the time at first, my energy got bigger and bigger as I got stronger. But then I realised that if I did too much I’d feel ill again, so I had to learn not to even though I wanted to go mad. I had to save my energy so I could do stuff later like wind Phoebe up otherwise my blood pressure would drop and I’d see funny lights in front of my eyes.
It was really hard because sometimes I wanted to get up so much that I almost had to ask Mum to pin me down. But eventually I taught myself to stay still even though being bored and tired is the worst thing in the world for me. Being bored and tired is worse than salmon, swordfish, prawns in mayonnaise, my computer crashing or even getting cold when I go outside and knowing I have to go back in again because I’ve had it.
Being bored and tired is worse than all of those, but I’ve had to learn that I must lie down until the tiredness goes away because that’s the only way I’m going to feel better, even if it takes days. That’s why discipline is important, that’s what Toad didn’t learn until it was almost too late and that’s why I’m glad Dad told me off last night.
If he didn’t do it sometimes then I’d run rings around him and Mum like I’ve seen some children do in hospital. I knew one girl who refused to eat anything except crisps and I realised that it’s easy to get spoiled if you’re sick and I’m glad I haven’t been. My mum and dad have made me happy but I don’t think I’m a spoiled child. Getting told off occasionally makes me feel normal, and I like that. It’s really important.
‘I don’t want any more medicine,’ Hannah whispered as I bent towards her.
‘You must, Han. It will make you better.’
‘I don’t want it,’ she said with a sob. ‘I’m tired.’
‘I know, Han, but soon you’ll have had enough medicines and then you’ll be able to play again.’
Hannah’s eyes were uncertain as she looked at me.
‘Would you like me to read you a story?’ I asked softly.
‘No.’
‘Are you sure?’
‘Yes. I’m busy.’
‘Doing what, Han?’
‘Fighting all the bugs.’
Hannah had regained consciousness soon after New Year, and days later we’d learned that she had gone into remission. It was wonderful news because it meant there were no cancer cells in her blood. But remission isn’t a cure and in a way there’s no such thing when it comes to the unpredictable foe that is cancer. Like every other patient, it was simply a question of time for Hannah – five years of remission was the benchmark of true hope, five years before we could believe with any certainty that she was really well – and even though her remission was a good start, we could not draw quiet confidence from it because the problems with Hannah’s heart had still not been solved. In fact, they had worsened during the second chemo cycle and were only just being controlled by medication as the doctors tried to decide what was happening.
They knew for sure that a virus wasn’t causing the problem and had adjusted Hannah’s medications to keep her stable. But she had developed septicaemia which was putting extra pressure on her heart and still needed to complete all six chemo cycles to maximise her chances of being well in the long term. Andrew and I had been shown charts mapping the recurrence rates of leukaemia and seen for ourselves in black and white the lines on the graphs which dived down dramatically the more chemo a patient had.
I knew Andrew found the situation very hard. He struggled with the fact that we were not being given definite answers about Hannah’s heart, but I understood that medicine was often more of an art than a science, a piecing together of clues before coming to a conclusion based on instinct instead of certainty. It takes time to make a diagnosis in such a complex situation, and I trusted the doctors to do all they could to find out what was wrong.
In the meantime, we’d stayed in the high dependency unit for Hannah’s second round of chemo to allow the doctors to keep a close eye on her, and this time the