Inchworm (5 page)

Today I leave hospital. I can’t believe it. Some of the transplant team are here to wave goodbye – the ones who aren’t too busy. I cry a few tears. It’s been like an unusually long holiday at a hotel with lots of staff, a good gym, but no sunshine. Alistair has taken more leave and comes all the way from Cornwall to collect me and Mum but he refuses to put the flashing light on top of his car like he did when he drove me here. Mum says he’s a spoilsport. We are going to stay at Daddy’s flat and Alistair will be with us for three days. He looks less like a horse these days, more bovine and sweet looking. He’s being gentle with me, and with Mum, who keeps bursting into tears. Anyone would think I had died instead of surviving.

It is scary that I won’t be surrounded by nurses and doctors who know what to do if anything goes wrong, but I’ll still have to go back twice a week for check-ups and physiotherapy and once a week I’ll have heart and lung biopsies,
ECG
s and other tests. I think that’s right, it’s complicated, but Mum has all the details. I was lucky to have my transplant the first time I was called. Katy says some people have as many as five ‘shouts’ or ‘dry runs’, even getting as far as having a general anaesthetic before the operation is cancelled. That would be pretty bad, waking up without anything having been done and having to go home and wait to go through the whole thing again. That sort of thing happened to me once, with my operation to build a pulmonary artery. When I was opened up, the surgeon could see I had no vestige of an artery to build on, so they had to close me up again without doing anything. That was when I went on the transplant list.

I don’t remember much about the preparations on the night I came in for the transplant. I had lots of blood taken, along with loads of other tests, and I had to bathe in disinfectant. The oxygen I was given made me feel light-headed and giggly. Mum wasn’t allowed to kiss me but I remember blowing her kisses as I was wheeled into the theatre. I don’t think she saw, she was crying onto Alistair’s shoulder. The last thing I remember is that I felt cold and wished they’d let me keep my socks on.

I feel I’ve been imprisoned for years and now I’m free, out on bail anyway. All the people with no worries, laughing and chatting, kids running and playing – they don’t know how lucky they are.

London is grey after Cornwall. I miss the big sky and the blue bay. But there are yellow and purple crocuses under the bare trees, a promise of spring. So many people walking briskly in the wintry wind, healthy people with hearts and lungs working properly.
I’ll
be able to do that soon.

Dad’s flat is large and expensive looking, the garden floor and ground floor of a Victorian house in Southend Green, a couple of minutes to Hampstead Heath. Great for my new exercise regime: walks building up to twenty minutes or more a day. Mum and I will know the Heath well by the time we leave. I have Daddy’s bedroom and Mum sleeps on one of the two enormous sofas in the sitting room – actually, it’s a sofa-bed. I feel rather guilty about having the double bed while Alistair is here, but he is being nice about it. I’m glad he’s here for Mum. At the same time I’m sad that Daddy isn’t here, and we aren’t one happy family. I light a candle for the donor of my new organs. ‘Whoever you are – thank you.’ We celebrate my new life with a carrot cake from the patisserie in the village.
It’s a Wonderful Life
but I’m tearful, I don’t know why; the counsellor at the hospital says it’s normal, and I mustn’t worry. One of the drugs I’m taking makes my mood swing wildly, one moment I’m euphoric and the next in despair. I must remember that it isn’t permanent depression; it will pass when I eventually come off this particular drug.

Alistair has done loads of shopping. He got me lovely fresh fruit, strawberries and raspberries, plums and peaches – all out of season. We are having an Indian takeaway, but I’ve gone off curry. I seem to have lost my sense of taste. I wonder if my donor didn’t like spicy food? Mum says I shouldn’t have anything too hot anyway, just gentle food. So in the end I have only plain rice with pappadoms and dhall and a lovely tomato salad, made by Alistair, and chopped banana. We have to eat at the dining table, not sitting on a sofa watching
TV
, as the furniture is upholstered in cream suede and we’re sure to spill something on it. Mum suggests throwing blankets over it all so we won’t have to worry. But Daddy only has duvets.

We watch a movie on Daddy’s home cinema screen, which takes up one wall of the sitting room. He works in the movie industry. Well, actually, he works at a film archive, but he is still trying to make movies. He did make one once, but it wasn’t released. We watch
The Wizard of Oz
. I have seen it about six times. The first time, I was five and I screamed the place down and had to be carried out. It was the wicked witch, of course, with her horrid, green face.

Mum and Alistair are sitting at one end of the enormous sofa, cuddling and drinking sparkling wine – Mum is scared of even
opening
a bottle of
red
wine in case it spills – and I’m at the other end, tucked up with a duvet and Rena Wooflie. She is looking smart, as Mum washed her when I was in
ICU
. I had no idea her checked dress was such a bright pink.

I miss my cats. I wonder – if I phoned Mrs Thomas, would she get Charlie to meow to me? Cats have no understanding of time and distance. Will they forgive me for leaving them? They might have forgotten who I am when they see me. They might prefer to be with the Darlings in their huge garden, with chickens and rabbits and ducks to chase. They won’t want to go back to Bowling Green and the tiny garden there.

My first bath outside hospital: Mum helps me in and out. My scar is quite sensational. Still a little bit weepy, the incision – and me. We have to keep a close watch to make sure there’s no infection. My left arm hurts when I lift it; and my right leg, for some reason. I had been told that having the clips out would be painful but it wasn’t too bad. Fear of pain is often worse than the pain itself, in my experience.

First night in a civilian bed. It’s so soft and comfortable. No machines humming and lights flickering. It feels strange.

I was in danger of becoming institutionalised.

Mum’s travel clock says
4
a.m. I get up for a wee and sit on the lavatory, simply enjoying the fact that I’m alive. A small, beige moth drowns in the puddle of damp by the bath plug. Another flings itself again and again at the ceiling light.

I look at my hands. The skin is torn where I bite my nails. The central heating is off but the towel rail is heated and I don’t feel cold. London at night is quieter than Cornwall, but then there’s the far off siren of an ambulance. I wonder who is sick, and will they die? In Cornwall there’s the wind fighting to get in the windows and doors, the waves crashing on the beach, gulls calling to each other in the dark. If I was there, Charlie would be on my lap. She doesn’t allow me to go to the bathroom without her.

A line from one of Mum’s bathroom books – ‘Poetry is truth seen with passion.’

And from my bathroom reading: ‘Moth caterpillars and larvae have very particular food needs. Some live only on nettles, some on elm leaves, or oak, some on chestnut.’

Perhaps I’ll be a lepidopterist. It sounds such fun – You are a night creature like fox, badger, bat. You have a large white sheet spread out on the leafy floor of a wood or wherever and a powerful mercury vapour lamp. Moths are for some unknown reason attracted to the light. They arrive on the sheet like dancers and clowns tumbling into a brightly lit circus ring, fluttering their papery wings, quivering and shivering their furry bodies.
‘
Moths… live in a world of smells. They also have tympanal organs, sensitive to sound, which are situated on their abdomens or thorax. The moth “hears” vibrations
.’
(That’s from
Wildwood
by Roger Deakin.)

More cards today, from Ginnie and from Brett’s parents, who’ve sent me a video of bird behaviour and song. Mum won’t let me watch it until Dad shows us how to work his equipment as it’s all so professional looking. But I can easily do it. Adults are useless at modern technology.

Daddy phones from some foreign place with sounds of partying going on behind him.

‘How’s The Great Gussie?’ He’s referring to
The Great Gatsby,
of course, one of his favourite movies. He has a huge collection of old movies.

‘I’m good, Daddy. I like your flat, it’s ace. Lurv the cinema screen.’

‘Yeah, yeah, good, good. Make yourselves at home, that’s right. Give me to Lara, honeybun.’

Mum takes the phone with a sigh, goes into the other room and listens.

He always wanted me to call him Jackson and Mum Lara, but I prefer to use Mum and Daddy. It makes me feel safer, somehow. I don’t want him to be a friend – I need him to be my father. He’s never been good at that, though. Alistair is much more father material. He’s a family doctor and Mum is keen on him. He’s kind. I think he’s a bit embarrassed at sleeping with my mother in the next room, but I’m broad-minded. At least he is nearer to Mum’s age than Daddy’s girlfriends are to his. Daddy seems to only want trophies half his age.

PREDICAMENT: A CONDITION; AN UNFORTUNATE OR TRYING POSITION

THERE’S A SAD
and sombre atmosphere in the cardiac rehabilitation clinic today. Two people have died this week waiting for donors – one was Pete, a window cleaner I met about three times when we were both in wheelchairs, waiting around. He was always attached to oxygen tanks but still looked really grey. He has – had, three small children. He was forty-one. The other person was an eighteen-month-old baby girl. The team are all subdued and sad, but were really pleased to see me. It’s awful how guilty I feel at being alive, like the only survivor of an earthquake or a plane crash. I do stretching, stationary bike and arm ergometer exercises. It feels so good being able to breathe.

I hear one of the patients asking a physio, ‘Have you got a dog?’ and she says, ‘No, but I’ve got a horrible son.’

I didn’t see Precious today. I missed him. Hope he’s okay.

I have to be careful not to get viruses or infections, as I am immune-suppressed and will get ill. So I have to stay away from people with coughs and colds. I hope that doesn’t mean that I’m not going to be able to go to school.

On the way back to the flat, Alistair has to stop the car so that I can open the door and vomit. I’ve never been carsick in my life. Mum and Alistair discuss whether to take me straight back to hospital.

My incision is sore and my chest hurts from the retching.

‘I’m fine, don’t take me back there, please.’

‘I think she’ll be okay,’ says Alistair.

With the windows open, I do feel better. Mum finds a tissue, dips it in bottled water and cools my forehead and pulse points.

‘Don’t fuss, Mum.’

I take the tissue from her. I’m clammy, but I don’t think I’ll be sick again.

I think it’s the drugs. They all have side effects but they’re necessary to stop my body from rejecting my new organs. I’ll have to take them for the rest of my life, but that’s all right – I wouldn’t have a
REST OF MY LIFE
without my new heart and lungs and all these drugs.

‘If she’s no better when we get there, we’ll phone the hospital and see what they say.’

‘Okay.’ Mum looks relieved.

I’m glad Alistair is with us. He phones anyway, even though I feel fine, and they say to wait and see how I feel in an hour or two, but I feel absolutely okay so there’s no panic.

When Alistair goes back to Cornwall, we use Daddy’s car to get to and from the hospital. It’s swish – a black convertible sports car. Shame it’s too chilly to have the roof off.

Precious is at the clinic today. He’s looking well and smiles broadly when he sees me. ‘Guthie, Guthie,’ he calls from the other end of the corridor. It’s good to see him. We work side by side at physio. Dolores is my favourite physiotherapist. She is a slender beautiful Ghanaian who never stops talking and laughing. She makes me work hard and I hate it at the time but feel grateful afterwards.

I watch Precious do his exercises, his arms the colour of conkers just out of the shell. The sight of the pale soles of his large flat feet somehow make me feel happier. Precious has heard from his father. He’s trying to get a job in England. They have a big house in the best part of Harare, but if it is sold they won’t be able to take that money out of the country. So they must think hard before making a decision.

Afterwards, in the café, Agnes tells Mum more about their predicament. There are food riots in Harare, as well as other towns in Zimbabwe. People can’t afford to buy their staple foods – mealie maize, cooking oil. Government troops are using tear gas to disperse protestors. Doctors and nurses aren’t getting paid. Drugs aren’t available for the sick.

‘It’s a nightmare. I think many people will starve,’ she says. ‘My husband is in danger because he vociferously opposes Mugabe and Zanu-
PF
. Members of the
MDC
and Mugabe’s political opponents are arrested and tortured. He must leave…’ she is sobbing, ‘he must bring our girls here. If he cannot work here we will go to Australia or New Zealand. They must leave…’