Authors: Jean Ure
He means children like me.
When you were ten years old, something happened
and you had to go into hospital.
T
he same as Bryony. I have got what Bryony’s got. I suppose, really, that’s what made me write the book.
Uncle Eddy is the only person who has read it. I can’t show it to Mum because she would start crying. Mum cries very easily. And Sarah wouldn’t like it because she doesn’t like anything to do with illness. She likes to pretend it isn’t happening.
I can’t even show it to Zoë. Zoë is the same as Chloë in my book. Chloë is her.
Zoë was the one who told me right at the beginning that you have to stay in remission for five years before you are properly cured. If you come out of remission before that time, then you probably won’t ever be cured.
The sooner you come out of remission, the worse the prognosis is. That is what Zoë told me.
Prognosis is just a word which means outlook. Like, the outlook is good. Or the outlook is bleak.
If you come out of remission in the first year, then the outlook is very bleak.
That is what Zoë told me. Right at the beginning, when I didn’t even know what chemo was.
I don’t know how she found out about all these things. Asked the doctors, I expect. Zoë always wants to find out about everything. She’s ever so much braver than me.
She’ll come on my programme for sure!
Zoë is like a lion! The only thing that really upsets her is not seeing her dad.
The first time Uncle Eddy came to visit me, Zoë went and buried herself under the bedclothes and wouldn’t come out. When he’d gone I heard her crying. I’d never heard her cry before. Not even when they stuck a tube in her chest so that the drugs could be dripped straight in without having to be injected. She really didn’t want them to do that but she still didn’t cry. But she cried that day when Uncle Eddy came.
When I asked her what the matter was she said, “It’s all right for you, you’ve got a dad!” She thought Uncle Eddy was my dad! I didn’t know then that Zoë’s dad never came to see her. Her mum came as often as she could but even her mum couldn’t come every day because she lives out in Essex and she couldn’t always afford it. So that was when I decided to share Uncle Eddy with her. I think it cheered her up a bit to know that I hadn’t got a dad, either.
We were in hospital for ages together, me and Zoë. They couldn’t get us into remission. With some people it happens almost at once, but with me and Zoë it took weeks. And then Zoë went and got sick with this infection, which was the only time her dad ever came to visit her.
It was horrid when she had the infection because they separated us and I wasn’t allowed to see her in case I caught whatever it was. I missed her so much! We always told each other everything, Zoë and me. We used to compare notes about what the doctor had said and what the results of our blood tests were and how we were both doing. And now I was on my own!
They put another girl in Zoë’s bed. She was only little, only about seven years old; she didn’t know what was happening. She kept screaming whenever the nurses came to take blood samples.
I felt sorry for her, but she was too young to talk to the way I could talk to Zoë. I was terrified in case Zoë didn’t come back. Or in case she died and they didn’t tell me.
I knew that people died. There was this little boy called Kris that was only a baby. He was only about Danny’s age. He died. A girl that was there, a big girl called Amanda, she tried to tell us that he had gone home. I believed her. It was Zoë found out what had really happened. She found out that he had died. Zoë always finds things out. She’s like a magpie. Inquisitive. But she says it’s better to know than not.
I suppose she is right.
My favourite nurse is Carol. I’d want her to be on the programme!
She used to be on nights, but now she’s on days so I see more of her.
When Zoë had her infection, Carol knew that I was frightened. She told me not to worry, that Zoë was going to be all right. And she promised to make sure she was put back in the same bed.
I wanted to believe her! But Zoë had already warned me about them not always telling the truth. She said that when she first came, there had been someone else in my bed. There had been a girl called Trudi. One day she had disappeared and not come back and Ellen, who is another nurse, told Zoë that she had gone into remission. It was only later Zoë discovered she had died. So I still went on worrying, until one afternoon I woke up and there was Zoë, grinning at me from the next bed. She said, “I’m back!” and Carol said, “I told you so,” and I felt mean for not trusting her.
Zoë said, “Why feel mean?” She said, “They lie all the time. I can’t stand being lied to!”
I don’t think they lie, exactly. I think they just want to protect us. They don’t want to tell us bad things unless they absolutely have to. They think we will find it upsetting, knowing that people the same age as us are dying. But as Zoë says, we’re not babies. When you’re eleven, you know what’s going on.
I think personally it would be a comfort if you knew you could always rely on them, the doctors and the nurses. And parents, as well. If you knew that they would tell you the truth. That way it would mean you wouldn’t get to worry quite so much.
This is why Zoë and me made a pact that we would always tell each other what was happening and not smile brightly and say everything was all right if it wasn’t. Like if we’d just had a bad result from a blood test, we would tell each other. Which we always did.
When we had been having chemo for a few weeks, our hair started falling out. Zoë’s started first, because she’d been having chemo longer than me. She said, “It doesn’t happen to everybody. Maybe you’ll be lucky.” But then I woke up one morning and found bits of hair all scattered about the pillow and I knew that it was happening.
I kept trying to pretend to myself that it wasn’t but every time I brushed my hair the brush would be all full of it, and I kept looking at Zoë and seeing these bald patches and I just couldn’t bear it, the thought that I was going to end up looking like that.
Zoë did her best to make me brave. She said things like, “It’s only temporary,” and “It’s only hair,” and “What does it matter so long as we’re going to get
better?” She said that lots of children with leukaemia get completely cured. “But they have to lose their hair first.”
I wailed, “But I grew mine long, specially! Specially for ballet! It took me ages!”
Zoë said, “It’ll all come back again. Mine did.”
At first I didn’t realise what she was saying, but then I said, “What do you mean, yours did?” And then she told me, she’d had chemo before. She’d had it when she was seven years old. She said, “I’ve been in remission all this time. Almost five years! If you’re in remission for five years, they reckon you’re cured.”
Another few months, and Zoë would have been cured. But she said she wasn’t worried. She said, “The longer you stay in remission, the better your chances are.” She said if she’d only been in remission for a month or so, then she would know that she was probably going to die. But as it was, she was going to go back into remission and this time she was going to stay in remission and when she grew up she was going to be a nurse and come and look after other children that had leukaemia.
“Because then I’ll be able to tell them that I’ve been through it.”
We talked a lot about what we are going to do when
we’re grown up. Zoë said that when I was a famous dancer I would have to come and visit her in her hospital ward and talk to all the children with leukaemia and tell them that I’d been through it, as well. I promised that I would. We agreed that it would be nice if some well-known person that had had leukaemia and their hair had fallen out would come back and talk to us. It would cheer you up.
There must be
some
well-known people that have had it.
Mum told me that there is a famous singer called something I can’t remember, something Spanish, and that he has had it, but it is not the same because he had it when he was grown up, not when he was a child. And I don’t know whether his hair fell out or not. Maybe it doesn’t if you are grown up. Or maybe it had fallen out anyway, like Mr Tucker’s at school, simply because he is old. It wouldn’t be so bad if you were old. It is horrid when you are still young.
It’s not only hair falling out, it’s other things, too. Like your mouth getting sore and your gums bleeding so you can’t clean your teeth properly. And people sticking needles into you all the time to take samples or give you drugs. Some of the drugs are foul, they make you feel really ill, and some of them make your
skin burn. Zoë said she didn’t have to have these ones when she was only seven but they were giving them to her now because of her having relapsed, which is what it is called when you come out of remission.
These are the ones that made me cry. I told Uncle Eddy I didn’t want them any more and he held me and let me weep over him and said that I was his brave girl. But I’m not! I’m not in the least bit brave! I haven’t any bottle at all. I hate it!
Even Zoë hated it when her skin got burnt. It’s really painful. But Zoë never cries. She just gets cross and swears. I wish I was more like Zoë.
Something that happened to me and not to her was nosebleeds. I’ve had dozens of them. I’ve had so many I’ve sometimes thought they’re never going to stop. Once I bled all over a picture of Darcey, in a book that Mum gave me for Christmas. That made me cry again, when that happened. It seemed so terrible, to nosebleed over Darcey. Zoë tried to rub her clean for me but there were still all these horrible browny smears.
When mum came to visit me she couldn’t understand why I was so weepy, and when I showed her the picture she said, “Oh, darling! Don’t worry about that. I’ll buy you another copy.” But I still felt
awful. I hate my body doing all these horrible, disgusting things and me not having any control over it.
I’ve tried explaining this to Mum but all she says is, “That’s the problem with being a dancer. You expect too much of yourself. You ask the impossible.”
She says there are times when you can’t expect to have control. She said, “Like, for instance, when I was pregnant with you … there you were, growing away inside me, and me getting fatter and fatter, and not a thing I could do about it except just wait for you to get big enough to come popping out.”
That is true, but Mum
wanted
to have me. I didn’t want to have AML. I didn’t want to get sick and bald and bleed all over Darcey! Mum had a baby to look forward to, but what have I got?
Mum says that I’ve got the future. She says, “That’s what you must hold on to. You’re putting up with all this now, so that in the future you can be well and strong. Whenever you feel low, you just keep reminding yourself.”
I do try, but sometimes it’s not easy. Sometimes it seems as if I’m just saying it to myself and it doesn’t really mean anything. Sometimes I think I’ll never be well and strong.
It was better when Zoë was here. I felt braver when I had her to talk to.
Zoë got out of hospital before me. She went back into remission and they let her go home. She promised she’d come and visit me, and she did for a little while, because she still had to come back to the hospital once a week for tests, but then I went into remission as well and we didn’t see each other very much after that. Only just now and again when we had an appointment on the same day, except once when Uncle Eddy had to drive down to Essex and he took me with him and left me at Zoë’s and we spent the day together.