Inchworm (2 page)

I have the same hallucination as I had before. It’s so scary. I hate it. I’m having an anti-psychosis drug to make the horrors go away.

Mum brings in some music for me, with ear phones. I don’t know what it is, but Alistair sent it. It’s Handel’s Arias for opera or something, very soothing. He said to listen to it when I go to sleep and then the horrors won’t come back.

I sleep and dream I’m running along Porthmeor Beach, with my cats following me. The sky is pink and the sea flat. Suddenly an elephant appears, swimming majestically, then another and another. They form a circle and raise their trumpets and squirt water into the sky, like an illustration in a Babar story. I wake feeling wonderful, sore but happy. I can breathe, fill my new lungs; soon I’ll be able to run along the beach again.

I can’t wait to go home to my cats, my darling Charlie and bossy Flo and scaredy-cat Rambo. To see Brett and my new family: Claire and Moss, Gabriel, Troy and Phaedra, and Fay, my great Aunt Fay. I’ll be able to go to school. I am so grateful to my donor and his/her family. Without them I would not be alive. And suddenly I am in tears for that dead person and her grieving family and friends.

It rains every day but I love the raindrops running down the hospital window, the blurred bones of leafless trees. I love the starlings waddling across the grey grass; a robin’s red breast the only colour in the January landscape, like a still from
Doctor Zhivago
, the sky a khaki grey-green; I’m growing fond of the muffled sound of a helicopter landing with someone arriving for a transplant, or maybe the transplant coordinator delivering an icebox with organs in.

Today’s biopsy shows no signs of rejection, no inflammation.

My first walk: I’m helped, of course, but to be vertical and walking is marvellous. I don’t feel as breathless as I did
BT
(Before Transplant). A whole load of tubes, like a milking machine, accompanies me. The cardiac monitor has been unplugged, so I can move about but I feel woozy and have to get back to my bed, my safe island.

Later I find myself talking to my new heart and lungs as if they are visitors and I want them to feel at home. In fact they are more like adopted children, who will settle down and learn to love me as I learn to live with them, hopefully. Otherwise – disaster! ‘Now I hope you don’t miss your other body too much, though I’m sure you will for a while, until you get used to being inside me. I promise to look after you. I’ll do plenty of exercise and have my teeth checked regularly so I don’t get infections. I’ll eat all the right foods and never eat smoked salmon or unpasteurised cheese.’ (I will have to avoid food poisoning as I am immunosuppressed owing to all the antibiotics etc that I have to take. At the moment I am pumped full of painkillers, Septrin, cyclosporine, all sorts of drugs with long names.)

‘I can’t take you to a foreign country for a year,’ I tell my new organs. ‘I can’t remember why, but that’s all right because we’re going to live in Cornwall, and that’s like a foreign country. It’s got banana trees and palm trees.’ I press my hand against my chest and say, ‘I promise you you’ll love it. I’ll never eat shellfish or blue cheese or rare meat. And no soft eggs.’

Bloody hell, am I going to have to survive on vegetable soup?

If the heart cannot feel why do we say heartfelt? Deep in my heart? Heart throb? Heartache? Heartbroken? Fainthearted? Eat your heart out? Lose my heart to…? Set my heart on doing something? Braveheart? With all my heart? (I am told that because of some surgical procedure I will feel no pain from my new heart, so no heartache then.)

I’ve asked Daddy to lend me a camera – I left mine in Cornwall – so I can record what goes on here in hospital. He gives me one of his own precious cameras – an old Leica. It’s fiddly to load the film but it’s smaller than my Nikkormat and not as heavy. It has to be sprayed with disinfectant before I can use it. Hope it doesn’t harm the works. I make portraits of all the nurses and doctors who come into the room, the cleaner, the physio, my pale-blue room, the machines behind my bed, the view through the window, and Mum. Mum has lots of grey hairs. Shall I tell her? She looks older and anxious, but she’s always looked anxious.

I’m not allowed out of my room yet. It’s like being in prison. But I have mail!

Der Gussie,

How ar yu? I am good. My rabits and duks are good. My cats are good. Zennor is good. She et wun ov Claire’s best shoos. I hope you will get beeter and I will sea yu sooon.

Luv,

Gabriel xx

(He has drawn a picture of his puppy chewing a shoe. It was in the same envelope as Fay’s Get Well Soon card that had a lovely drawing of a tabby cat on it by an artist called Gwen John.)

My dearest Gussie,

I hear you are doing very well and making a good recovery. It will be lovely to see you again – my little great niece! We will have great times when you come home. Do you like the ballet? I can take you if you like, with Phaedra (if she’s not surfing). There’s a good Dutch dance company performing in Truro in the spring. Hopefully you will be back by then. My naughty cat Six-toes killed one of the chicks – the black one. She is banished from the garden now and has to stay indoors. She is very cross as you may imagine.

Get well quickly, my brave little darling, we are all thinking of you,

Lots of love,

Fay xxx

PS
Claire, Moss, Phaedra and Troy all send love and kisses.

They had all put messages on the card:

Masses of love, thinking of you, Claire and all the Darlings. xxx

Be good, love Phaedra. xxxxxxxxxx

YAY GUSSIE
!!! – Troy x

Looking forward to seeing you soon, lots of love, Moss. xxx

On a home-made card covered in stuck-on silver stars and pink hearts:

Dear Gussie,

I hope you are feeling better. I can’t wait to see you again. When are you coming home to Cornwall?
SCHOOL IS HORRIBLE. MY SISTER IS HORRIBLE
. I am feeling dark night blue without you.

Can’t wait to see your scar, is it brill?

Love, Bridget xxxxxxx

(Bridget lives in colour, thinks and feels in colour. Not like ordinary people who see red, feel blue, are yellow-bellied. She has an existence made up of an artist’s palette of vivid colours. A weird and interesting child with a purple pain in the neck of a sister, Siobhan, who has her eye on Brett, and anything in trousers.)

Bridget has put a small gold paper star inside the envelope in a separate folded up piece of tissue. When I unfold the tissue there’s a message that says:

To my gold star best friend Gussie. xxxxxxxxxxx

A card with a print of a Matisse bluebird paper cut-out:

Howyadoin Guss?

It’s cold here and there’s lots of rain so we haven’t been birding lately and I can’t use the big telescope. Buddy has flown. He came back once or twice to visit. Made loads of racket so’s I’d go out and see him, but I think he’s truly independent now. Probably joined the large flock up the road. Will you be able to start school when you come back?

Hope you’re not feeling too crook.

Miss you Guss,

Brett x

On the back of a picture postcard showing the harbour, St Ives:

Dear Gussie,

Forgive my poor handwriting. It is because I cannot see very well.

You will be happy to hear that Charlie, Flo and Rambo are all eating well and not moping too much without you. They are getting on quite well with my Shandy, so don’t you worry about them. I am having my eye op soon and the cats will go to the Darlings until you come home.

That’s all for now dear, but I hope you are getting on well and I’ll see you soon,

Love,

Mrs Thomas

It’s strange seeing Daddy after all this time. He looks thinner than I remember and he’s going grey at the front and sides. He’s more handsome than ever, even with his chin all bristly. I make a photo of him, finishing the roll of film.

‘My best side,’ he insists. He brought a huge bunch of red roses but wasn’t allowed to give them to me. Flowers aren’t allowed, or cards. Germs. Mum has to read my cards, then take them away.

Daddy has taken my film to be processed.

Alistair has to go back to Cornwall to work soon, but Mummy will stay in a hospital flat to be close to me. Daddy said she could stay in his flat but she declined. I don’t think he has a girlfriend at the moment, or not one he’s mentioned anyway, but Mum says she’d rather be here so she can be close to me. He’s off on one of his business trips soon and so we can stay at his place for at least a couple of weeks when I get out of hospital. We have to stay near the hospital for three months so the doctors can check on my progress, make sure I don’t reject the organs, and ensure the drugs are working. There are lots of drugs to take, five times a day at first. If you shook me I’d rattle. I’m going to have to be very careful to take them at the same time each day. Mum will take charge of my medicines and has a chart so she can tick them off as I swallow them. My scar is sore, of course, and it will take about a year before it fades. Maybe by the time I’ve grown breasts and can wear a bikini on the beach it won’t be so bad. Or maybe I’ll start a fashion of wearing loads of clothes on the beach, hiding my body completely, The Mystery Girl. Actually, if I wore a one-piece swimsuit you couldn’t see the scar at all. Anyway, I like scars: they’re like badges of honour or medals showing how brave you’ve been, and how experienced in the knocks life gives you.

There’s a quote from someone in one of the hospital leaflets that says about a transplant patient,
‘You have traded death for a lifetime of medical management.’

I am allowed to have a bath today. I can’t believe how easy it is to breathe. It makes me realise how ill I felt before the operation. I do exercises to strengthen my heart muscle. I hold up my hands and admire my newly pink fingernails. So lovely! Maybe I’ll stop biting them now. Pink – my favourite colour.

But the best thing is feeling energetic. I can’t believe how well I feel.

There was a little boy on
ICU
– Jordan, he was six – but I didn’t get to know him. His operation wasn’t successful; there were complications and he died last night. The nurses were crying.

There was also a boy of about fourteen, Precious. What an unusual, beautiful name! He’s too hunky to have a name like Precious. It’s no stranger than Bonny, River, Sky or Summer, though, or Hope, Joy or Faith. He had his transplant (heart only) the day after me so he is in a similar state of recovery.  We see each other most days in physiotherapy sessions and clinics and support group meetings.

He is from Zimbabwe and his mother is staying in a hospital flat. Precious speaks excellent English in a soft whispering voice. He was born healthy but developed life-threatening heart problems last year and needed a transplant to survive. He has some family in England luckily and was able to wait here for his donor heart. His skin is the colour of treacle toffee and he has a wide-open face and smile. He is a good runner, or used to be, he tells me, and hopes to be again.

I have offered to teach him to play Scrabble. Mum is delighted that I have found a friend. It takes the pressure off her. She spends a lot of time talking to Agnes, his mother. She told my mum that his father, a doctor, is still in Zimbabwe with their two daughters and she worries about them because there are food and fuel shortages there and the people are rioting.

I sleep and dream I am unable to walk or run; I am in a wheelchair, strapped in and cannot move. I cannot breathe. I wake sobbing, relieved.

My cardiac surgeon, Mr Sami is very good looking. He’s Egyptian and is like a Pharaoh, with a hooked nose like my cat Charlie, dark eyes and thick lashes. Mum thinks he’s hunky and she practically salivates whenever he visits me. He’s pleased with my progress.

‘My star patient’, he calls me. I bet he says that to all his patients. There’s usually about six other doctors with him but I don’t know their names.

My fingers and fingernails look normal – not clubbed any more and no longer blue. I’m pink all over!

Mummy reads to me each day from
The House at Pooh Corner,
which is the book I chose to bring with me to hospital,
or tells me stories about when I was little or when she was a child. It is one of the compensations of being post-operative. I can’t get enough of it: being read to is my favourite thing in the world. Mum is particularly good at it – reading out loud. She does the voices and really gets into the heart of it. She also likes Winnie the Pooh even though we both know most of the stories off by heart. By heart – what a strange expression. Will my new heart be a good learner?

She’s reading me the first story where Winnie the Pooh is trying to look like a small black cloud to fool the bees, and he rolls in mud and then uses a blue balloon to float up as high as the honeycomb. Oh, you have to read it.

A WEEK AGO
I woke with a high temperature, palpitations, swollen ankles and legs and felt very breathless and as if I had flu. I was having acute rejection. I was put on a different drug regime and given an
IV
line into my arm. I spent the week feeling awful and having loads of tests – biopsies,
ECG
(electrocardiogram) and echocardiogram (an ultrasound picture of the heart) and blood tests. I’m better now, but feel rather weak and tearful. Also, the intravenous steroids have made me look like a hamster, with huge round cheeks.