Читать книгу Hannah’s Choice: A daughter's love for life. The mother who let her make the hardest decision of all. - Hannah Jones - Страница 8

It’s Easter 2009 and I’ve just got back from holiday. It was brilliant. We went to Cornwall for a week and I really enjoyed myself because there have been loads of times in the past when I haven’t got to go away with Dad, Oli, Lucy and Phoebe during the school holidays. I went last year but didn’t enjoy it much because I was ill so I spent most of the time in my wheelchair and kept getting cold, which meant Mum had to put me back in the car with a rug. We spent ages sitting in there together while the others did stuff, which really annoyed me.

But this time I felt much better and wondered what my doctors would say if they could see me playing on the arcade machines and eating candyfloss. You see they thought I wasn’t going to get any better when I left hospital nearly two years ago after saying no to a transplant. I knew that not having the operation would limit my life but I just didn’t want to have it. Instead I was given a pacemaker, and although my heart still doesn’t work properly and I have to spend a lot of time in bed, I’m stronger now and no one expected that. I like the fact that I’ve proved the doctors wrong. I did it the first time when I was little and had leukaemia. Now I’m doing it again. I don’t know if I’ll be so lucky a third time, but I bet those doctors are amazed I’ve made it this far.

We left Mum at home so that she could have a rest while we went to Cornwall. With all of us, the animals and the horses, she gets pretty tired so she wanted to be by herself for a bit. But it didn’t work out like that because my great aunt Kitty got ill as soon as we left so she came to stay and Mum didn’t have the holiday for herself that she’d planned. But she didn’t mind because that’s just how she is. If anyone gets sick, then she’s the person who looks after them.

If you ask me it was brave of Dad to take us all away on his own, though. Oli, Lucy and I can look after ourselves most of the time but you have to keep an eye on Phoebe, which is hard because she never stops and Dad’s not used to it like Mum is. We stayed in a caravan in a town called Looe and went to the arcades, played bingo, ate fish and chips and even went gold panning in a river. I found a tiny chip but not enough to make a ring or anything.

Dad also took us shopping and bought me a purple and red checked jacket with a furry hood and a pair of boots for Phoebe. But she didn’t want to let go of them after Dad had paid and the girl in the shop needed to put them in a bag. So I had to chase her around the shop because I knew someone might think we’d stolen the boots if we walked out without a bag. That’s what I mean – Phoebe is a terror.

I was a bit worried before we went away because my wheelchair didn’t fit in the back of the car. But I was also happy we weren’t taking it because although it’s pink which means it’s as nice as it can be, I still like to walk. I shouldn’t have worried, though, because I didn’t need my chair in the end. That’s what seems to happen when I’m really excited about something – somehow I find the energy to do it. It’s only afterwards that I feel ill.

I think that’s why I managed to go on a rollercoaster in Cornwall. I really wanted to do it because I’d never been on one before. But as we queued, we saw a sign which said, ‘Don’t go on if you’ve got a heart complaint,’ and I felt worried that Dad was going to stop me from going on. But then he smiled and said we wouldn’t tell Mum so I knew he was going to let me. It was amazing. Flying through the air and laughing as the wind rushed by. It was so fast. I screamed my head off.

Now I’m home again but I’m still not back at school. I’ve been trying to go for months but it hasn’t gone that well because I’ve been ill or something else has happened and I’m missing my mates. Simone’s been telling me what’s going on and the latest news is that she and Tiago have split up. I don’t think she’s that bothered about it.

I wish I could be at school, though, instead of hearing about it on the phone and one of the reasons why I like being with my friends is because they don’t look at me all worried or go quiet as they wonder if I’m tiring myself out. They know that if I’ve done too much the colour will drain from my face, I’ll see spots in front of my eyes and have to lie down until I pick back up again. They trust me to know when I need to slow down and leave me to get on with it, which is what I really like.

But since I came out of hospital after having the pacemaker I haven’t been able to get to proper school a lot of the time. Instead I go to the one at Hereford Hospital where the day only lasts the morning and we have our lessons in a classroom at the end of the children’s ward. There are usually four pupils and two teachers, which is great because I get help with maths which is my hardest subject. I don’t get numbers and my mind wanders easily when I don’t understand something so I usually end up staring out of the window. But it’s not so easy to daydream when you’ve got a teacher sitting right next to you.

I like going to hospital school, though, because at least it means I’m well enough to do something. When I first came out of hospital nearly two years ago, after saying no to the transplant, I just lay in bed all the time because I was so ill that the doctors had said I wouldn’t get any better. But I knew I would, even though my heart wouldn’t, if you see what I mean. I had the pacemaker and a drug called Dobutamine to make my heart beat stronger. Most of all, I knew I’d get well because I hate being in hospital so much that being at home always makes me feel better.

The Dobutamine gave me really bad headaches, though, and was a real pain because I had to have it through a central line attached to a syringe driver that went everywhere I did. It was like Hansel and Gretel but with a syringe driver instead of bread. So even though it kept me going, I was really happy when I stopped taking the Dobutamine last year and I’ve been getting stronger ever since. At the moment I seem to be doing OK with just my pacemaker.

I know exactly where it is because it’s underneath a scar on my chest, just across from my heart. It’s got four wires, one going into each chamber of my heart, and sometimes I can feel it zapping. The worst, though, is having it tested because when one side of the pacemaker is switched off, I can feel my heart beating really hard against my chest until they turn it back on and I can feel the difference immediately.

Most of the time, the problems with my heart mean that I just have to make sure I don’t get too tired because that’s how a bad heart makes you feel – so tired you can’t even lift your head off the pillow sometimes. It’s because there are four chambers in everyone’s heart – two on the left and two on the right – and the ones on the right side of mine don’t work properly. Think of it like doors that are blowing in the wind instead of being locked shut. The blood in my heart does not pump properly so my heart needs all my energy to keep going, which doesn’t leave much for the rest of me.

The pacemaker has helped, though, because if my heart gets tired and slow it says, ‘Jump to it.’ My heart can also beat too fast and the pacemaker slows it down as well. It’s a bit like a schoolteacher telling the class to sit still and start working. Occasionally I can feel it when I’m ill in bed and my blood pressure has dropped. Sometimes it’s like a vibration but at others it’s more like a ping! I know it’s the pacemaker because before I had it fitted I never felt like that. Sometimes it stops me going to sleep but most of the time I can’t feel it.

The doctors know what’s going on in my heart because they do scans like the ones women have when they’re pregnant. They’re weird because I can see my heart and the blood going in and out of it in different colours on the screen – red and blue. That’s when I can see the valves aren’t closing properly and one of the sides of my heart is leaking which I know isn’t good. Even though I feel better now, the doctors have told me my heart has not improved, which upsets me a bit because I think I’ve been doing OK.

Now we’re back home after our holiday and Oli, Lucy and Phoebe have started school again, which means the house is quiet. I get lonely sometimes because there aren’t many other ill children around here so there’s no one of my age to talk to. But I also quite like being quiet because although I love my brother and sisters, they can really annoy me at times too. Oli and Lucy know all the best hiding places in my bedroom so if I try to keep something secret they’ll always find it. Phoebe is also in and out all the time and if I’m feeling tired I just want her to leave me alone even though I know she doesn’t understand. When I’m really ill it’s as much as Mum can do to get her to come down the stairs in the morning without screaming, and so it’s not surprising that she doesn’t get it when I’m just ordinary ill.

Being on my own again means I’ve got lots of time to think and I’ve been wondering why people are still so interested about me not having the transplant. Sometimes I get sick of talking about it because I think there are other more important things to say. But everyone went mad when they found out about my decision after a newspaper did a story about it. That was last year but journalists still ring up to see how I am and ask the same things over and over again. Why didn’t you have the transplant? What made you decide not to? Will you reconsider? One even asked me once how I wanted my funeral to be. Questions like that annoy me. I’m thirteen and I’ve had to talk about dying. It’s not that I hate mentioning it but I don’t like going on about it. No one does. I can talk about it to a certain extent but then I go quiet.

I just wish people would accept that I don’t want the transplant. I want to be at home even though I know the doctors have said I won’t get better. It was a big decision but I wanted to make it even though I felt scared and sad and anxious all at the same time. Mum and Dad said they’d choose for me if I wanted them to but I didn’t because I knew they might feel guilty if something went wrong. It was my decision. No one else’s. And I made it for the right reasons.

Now the summer term at school has started, I’m looking forward to September because I hope I’ll be well enough to start Year 10. It’s scary because it only seems like yesterday that I was in Year 7. I’ve already picked my GCSEs and I’m doing the five main subjects plus ICT and something else I can’t remember. I’m trying to do a bit of everything because I’m at a crossroads about jobs and need to learn as many different things as I can. At the moment there are three jobs I’d like to do: mostly I want to be like Cheryl Cole but I also want to be a fashion designer and make pink clothes because there aren’t enough of them, or be the boss of a company like Alan Sugar in The Apprentice – really rich and in charge of everyone.

To keep myself lazy busy now I’m home and everyone else is back at school, I’ve been watching my new favourite film – Mamma Mia! It’s brilliant, cool and fab all at the same time. I like the dancing and the jokes but most of all I love the singing and can’t decide which is my favourite song. It’s great when the lady sings ‘Does Your Mother Know’ to her boyfriend on the beach, but I also like ‘Honey Honey’ because it always makes me laugh when Sophie sings ‘You’re a doggone beast’ and giggles.

The songs are cool and I’ve been sitting in my room reading the words on the CD cover and singing along. Sometimes I get up and dance a bit too. Head banging is my favourite thing because it makes me feel dizzy, although I sometimes have to sit down if I do too much. But it feels great while I’m doing it, and that’s what counts, isn’t it?

Of all the systems, processes and cycles that make up the miracle of human life, perhaps the most amazing is the heart – the power house of the human body which keeps the brain and organs fed with blood. An adult heart beats on average between 60 and 100 times every minute of every hour, day, week, month and year of a person’s life, however long – a feat of natural engineering that has never been surpassed by the bridges, rockets or machines built by people.

Since New Year we’d known Hannah’s heart wasn’t pumping as effectively as it should have been. But as time had passed it had become increasingly clear that the problems were not being solved by medication. Hannah was still tired, weak and out of breath – the classic symptoms of heart abnormalities – and I was terrified when the doctors told me she was suffering mild heart failure. I tried to stem my panic by telling myself the term was a catch-all which covered a huge range of possibilities from sudden, severe and fatal heart failure to temporary symptoms from which a patient can recover. Heart failure can mean anything from a weakening of the muscles of the heart to a virus which disrupts its electrical signals or a glitch in one of the valves. No one knew what was causing Hannah’s problems and I simply didn’t dare consider they might be anything other than temporary.

But as she rested after her second round of chemotherapy, Dr Williams and her cardiologist Dr Wright decided they needed to do a more in-depth scan to give them a fuller picture of what was happening. Hannah had had scans including ECGs to measure the electrical activity of her heart and mini echocardiograms which used sound waves to create a picture of it, but now the doctors needed to know more.

‘Is my heart still poorly, Mummy?’ Hannah had asked when I told her she was going to have a special X-ray.

‘The doctors aren’t sure so they want to look very closely,’ I told her.

‘Has my heart got bugs like my blood?’

‘We don’t think so, but Dr Wright will use his special machine to find out.’

‘Will he make my heart better?’

‘I hope so, Han.’

A couple of days later we were taken to the X-ray unit, where Hannah lay on a bed as Dr Wright smeared gel onto her chest before pushing a probe across it. Working around the central line coming out of her chest, he guided it until a picture appeared on the monitor beside Hannah’s bed. Before now the scans had only contained blurry outlines and shadows but this one was giving us a far more concrete image of what was happening inside Hannah’s body. Andrew stood close to me as we watched her heart expanding and contracting, the blood rushing in and out of it in waves of blue and red across the screen.

Pressing buttons as he moved the probe across Hannah’s chest, Dr Wright freeze-framed images to take detailed measurements. Lines and shapes, trapezoids and rectangles appeared on the images to give an exact assessment of Hannah’s heart rate and function. Numbers popped up on the screen and I stared at them, willing the figures to give us good news, praying that it wouldn’t be bad.

When the scan was over the doctors went away to talk before calling Andrew and me back to see them. Their faces were serious as we sat down.