Short story: Home Alone – or Into the Unknown?

Rose Bay is a leafy, upmarket suburb in Sydney’s eastern suburbs.  My grandparents live there, on a hilly street leading away from the coast road. Under glass-clear cobalt skies, houses dot the cliff leading down to the sea from their home; when, at the end of summer, the cooler breezes finally break through the suffocating heat, the bridge and opera house can be glimpsed across the jade-and-white waters of Sydney Harbour as the tall trees begin to sway once again. The suburb offers a lifestyle that’s the envy of many a Sydneysider, and frequently features on those Kirsty-and-Phil-type property programmes. My aunts live in nearby Coogee, my cousins in reclaimed brick and steel apartments in edgier, more central neighbourhoods jostling for position with hipster coffee bars and pop-up restaurants serving the latest trend in Vietnamese street food. The few visits to the city that we’ve made as a family since I was a young child have been the best possible advertisement for all the contemporary Australian lifestyle has to offer.

But that doesn’t necessarily mean I want to live there.

And there’s the problem you see, because over dinner a couple of weeks’ back, my Mum (British), and Dad (Australian), announced their intention to move there, now that my Dad has retired and my grandparents could use a little more help. Mum was an only child, of parents who aren’t around anymore, so what’s to stop them? And there’s me, just shy of 27, a Brit in most ways, but with this funny Australian bit bolted on, suddenly wondering, well, if my parents head off to Australia – where does that leave me? Do I stay here, in the country I’ve known as home my whole life? Or do I – as they suggested, rather strongly in fact, last night, move there with them and away from everything that’s familiar to me for a completely new life?

It can be strange having parents from two different countries. Often you don’t quite fit in in either. Or maybe it’s more accurate to say that you kind of half fit in each. You spend a childhood acquiring a random selection of habits, knowledge and customs from both sides to become a sort of hybrid. In Australia, my uncles say I talk like I’ve got a plum in my mouth. I say ‘cool box’ instead of ‘esky’, ‘hostel’ instead of ‘hostELL’; and I’ve never learned to share my cousins’ nonchalance in dealing with red back spiders lurking on the back patio. Then again, my so-called Britishness is diluted by a preference for Lamingtons over mince pies, and while I managed to get through my childhood without reading a page of The Wind in the Willows, my bookshelf contains a well-thumbed copy of ‘Harry the Hairy-Nosed Wombat’ and a box set of the adventures of Blinky Bill the Koala.

My parents met when my Dad (restless ex-law student who came here as a 20-something in the early 1980s) and Mum (hospital pharmacist) bumped into each other at a friend’s housewarming party. They bonded over a mutual loathing of those smug ‘Year in Provence’ books and, presumably, Wham and mullet hair dos and in time settled in Windsor. Eventually they produced my sister, now 30 and still living nearby and then me, now living in rather less classy but considerably more affordable Brentford.   Sydney not exactly being a short hop across the channel, we visited whenever annual leave and family finances allowed it – maybe 4 times during my childhood – and when that didn’t happen our years were punctuated by return visits from grandparents, aunts, uncles and cousins. The family photo albums variously catalogue these visits as sunbleached, relaxed and carefree against the white sands and vivid turquoise seas of Sydney’s many beaches; or as attempts to entertain our shivering visitors in the drizzle at Hampton Court, the British Museum or the Tower of London.

At the end of university, I did the whole ‘6 months in Oz’ thing, spent some time working, travelled around, hung out with the folks, but at the end of it, I don’t know, I was just….ready to come back here and get my life started really.  Like Dad, I’d studied law, and 4 years in things are really going well. I’ve got a great bunch of friends, I get out hiking at the weekends with my walking group, I’ve got my first flat in the pipeline…life here’s really shaping up for me. And I kind of thought I was here to stay.

Isn’t the real essence of your home country in the tiny details, the everyday certainties, the shorthand forms of communication with the people around you that you don’t even notice until you’re abroad? Post boxes, I know, are tall, round and red; emergency services can be reached by dialling 999, the Telegraph is to the right, politically speaking, Guardian to the left, and you get on the bus at the front. I know that if someone bumps into me in the street, the right thing to do is to say sorry, just in case. I know, too, that when someone hands me, say, a biscuit, or a document at work, and says “Here’s one I made earlier”, with a slight smirk and raise of the eyebrow, they’re not really trying to tell me how super-organised they are. For all that I’m an amalgam of things both British and Australian, this is the place where I feel most at home. Do I really want to leave it behind just now?

Then again, I don’t much fancy being separated from Mum and Dad – possibly my sister too – by thousands of miles either. You know what someone asked me the other day? “Are you going home for Christmas?”  And much as the almost 27-year-old don’t-you-realise-I’m-a-full-grown-adult-now pedant in me wanted to reply, “What, you mean Flat 1, Cameron Lodge, Lingfield Gardens, Brentford?”, I knew what they really meant was, was I going to my parents’ place. And how long, I wonder to myself, do people go on considering your parents’ house as your home once you’re an adult?  And, like it or not, how long do we carry on doing it ourselves? More than that, where will ‘home’ be once my parents are no longer in the same country?

So that’s the dilemma, really. Stay here, on my own and carry on with the life I’m building for myself? Or go with Mum and Dad to Australia, a country I like but which definitely isn’t ‘home’, and start life again from scratch?

Well, what to do. I decide first I need to talk to my friend Eloise. We go back a long, long way – to junior school in fact. She’ll give me a straight answer, if no one else does.

“You must be bloody mental! I’d give my eye teeth to move to Australia. Why’re you even thinking about it? And Sydney – it’s frigging gorgeous there – I’d come and visit you in a heartbeat! What’s the problem?”

I explain about the post boxes, the newpapers and the children’s TV references, but she’s having none of it. “Yeah, but Australia’s not that different is it? They speak English, and you’ll get a new job no problem. And you’ll be able to see your family, like, all the time instead of just visiting. It’ll be awesome!”

I come away feeling more confused than when I arrived, and so the next day I decide to Skype my cousin Simon in Sydney for a different point of view. We’ve always got on pretty well despite the distance, and he let me stay in his flat for a while when I was over there.

“You must be bloody mental! I’d give my eye teeth to live in the UK. I don’t know why you’re even thinking about it. London’s unreal – and you’ve got Europe on the doorstep. Over here you’d be surrounded by the relos – they’d never leave you alone! Stay right where you are, I reckon.”

I explain about Mum and Dad, the chance to get to know the rest of the family, start a whole new life in a beautiful city, but he, like Eloise, is having none of it. “Look – it’s a small world these days. You can come over and visit any time. But stay in the UK and you’ve got the best of both worlds – keep your life over there, and family a safe distance away.” Eventually I give up the fight and log off.

In search of some sanity, a couple of days later I Skype my grandma in Sydney. We talk about some of the options – do I have do decide straight away? Could I come over for a year, see how I get on? In the end, she sighs. “Well, it’s not an easy one love, not for you or your sister, that’s for sure. I mean, I know they say the world’s got smaller these days, and you’d only be a 24-hour plane ride from the UK even if you did move here.” She laughs a little. “It wouldn’t be like when my poor Mum and Dad came out – 6 weeks by boat if you were lucky, and that’s if you had the money for the fare! They knew they might never see their parents again, and they never did. Then again, in some ways maybe that made it easier – you made your choice, and you had to stick to it. This was your new home, you had no choice but to make it work.” She pauses, before going on, “But even these last 30-odd years, with planes and phones and visits, it’s still been hard being so far apart from you all.” She stops and contemplates me, her face distorted fuzzily by the webcam. “But this is the thing, love. We’d all love it if we could see more of you, and I’m sure your Mum and Dad would find it tough if you decide not to come here with them. But at the end of the day, you’re an adult now with your own life to live. You’ve got to make the decision that’s right for you.”

The weekend comes, and the walking group and I head off for one of our easier routes around Virginia Water and into Windsor Park. For all my Australian family’s teasing about the British weather, the late November day is cold and crisp, the sky a clear, pale blue and the ground crunches satisfyingly under our feet. The path loops through ancient parkland as we climb to the Copper Horse monument where we stop for hot coffee and chat and enjoy the view. Below us, the Long Walk stretches down to the Castle, and beyond that the town, still hung with the mist of the early morning. Beyond this still, the Chilterns, and over it all, a never-ending cycle of planes departing from Heathrow, the sound of their engines muted by distance, a reminder of the choice I have to make; to stay, to continue to invest in the life I’ve begun to create here; or to go, to seek out new adventures and new beginnings.

It’s a few days later now. I’ve made my mind up, and tonight I’m heading off to meet Mum, Dad and my sister for dinner so we can discuss our various plans. So there we are, reader, I’ve made my decision. Now it’s your turn – what would you do?

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Short story: Khatyn

We found the envelope among my grandmother’s things when we were clearing out the house. The rough, brown paper was addressed with slanted, Cyrillic handwriting, and so worn with age that the paper inside poked out through the edges.

Mum and I carefully spread the contents on the kitchen table. The official-looking paper bore a hammer and sickle seal in the letterhead, and we took it to be some kind of government record or certificate from Belarus, as that’s where grandma was born.  It was dated, if our guess was correct, 24th October 1955. Tucked inside the document was a creased black-and-white photograph, probably pre-war, which bore the signs of much handling. It was a village scene and showed, standing by a rough log hut, a man and a woman, aged perhaps in their late twenties or early thirties, and a girl and boy aged around 7 and 9. The man wore loose trousers tucked into boots and a smock, the woman and girl faded cotton dresses and flowered headscarves. They all stared solemnly at the photographer and their gaze, less hostile than disinterested, seemed to say, “You don’t know us; and we don’t know you.”

Neither of mum nor I could read Belarusian, so two days later we took the envelope and its curious contents with us when we visited my great uncle Stepan, grandma’s younger brother. In his tiny flat, mum sat on a dining chair next to Stepan, while I perched on the end of the sofa.  He read the document, and, when he reached the photograph, spent a silent ten minutes contemplating the rural family. Finally, he put the picture down, and ran a rough, shaking hand across his face.

“I never thought I would see these faces again,” he sighed.

We gave the old man a moment to collect himself, and then could restrain ourselves no longer. “But Stepan, who are they? What’s the document about?”

After a moment’s pause, he took up the photograph again, and pointed.

“This is the Maskyevich family, they were good friends of our parents in Belarus. The little girl here, she was Olga – Olenka. Your grandma Lyena’s friend,” this last he directed at me. “In Belarus, you know, Chashniki, our village, was only tiny with no school. But the Maskyeviches, they lived in Khatyn’, which was a bit bigger and had a school. Lyena would live with the family during the week so she could go to school there.”

Stepan paused again, looking past mum and I, through the window of his room. It was a gusty, damp spring day. Outside, the trees bowed and waved, as if trying to get our attention.

“When the Germans invaded Belarus in during the war, at first the grown-ups thought we might be all right – living in a village, far from anywhere. Why on earth would they bother us? But then stories began to reach us….” Stepan’s voice tailed off momentarily, as he grasped the arm of his chair tightly. “They were coming to villages like ours, burning them to the ground, killing everyone who lived there. We were lucky – we went to distant relatives in the city and then – well, you know what a long story it is, but eventually we ended up here.”

“Once we left Belarus, it was hard to get news from back home. But bit by bit, news began to reach us, and, well,….. what we heard was that the people of Khatyn’ hadn’t been so lucky. Early in 1943.…..” Stepan’s voice trailed off, and he stared at the floor. Mum stroked his hand, until he suddenly seemed to gather himself together, and continued. “Early that year, some partisans blew up an enemy convoy, so as a punishment enemy soldiers forced the villagers of Khatyn’ into their barn, and set fire to it.”

Mum and I stared at Stepan, horrified at what we were hearing, but he, having begun to unburden himself, now seemed unable to stop. He picked up the document and, after reading it, went on, “I don’t know how Lyena managed to get this, but the document is from the authorities in Belarus. It’s about what happened to our friends, the Maskyevich family.”

I crouched next to Stepan’s armchair, and he began to translate, running a finger beneath the lines as he read aloud.

“The Lahoisk Regional Soviet acknowledges receipt of your enquiry of 25 April 1955 concerning the whereabouts of the family of Maskyevich, Mikahil Leonidovich, (born 19 August 1909) of Khatyn village, Lahoisk region following the period of fascist occupation of the Soviet Socialist Republic of Belarus 1941 – 1944. We regret to confirm that following citizens perished during the destruction of Khatyn’ village on 22 March 1943:

Maskyevich, Mikhail, age 34

Maskyevich, Nina, age 31

Maskyevich, Timofei, age 12

Maskyevich, Olga, age 9”

Stepan leant back in his arm chair, weary with the effort and emotion involved in his task. I picked up the photograph again. My grandfather’s explanation and his translation of the document had breathed life and personality into its subjects. “Now you know us,” they seemed to say, “though we’re far apart, we’re connected.”

*************************

Back home, I flicked open my laptop and began searching. After a few blind alleys – how do you spell ‘Khatyn’’? –  I came across a raft of websites that confirmed Stepan’s story. In fact, the village had, in the 1960s, been chosen as the site for the national war memorial, as well as a memorial to the destruction of Khatyn’ itself. Photographs and video footage showed school parties and dignitaries visiting the site and newlyweds laying flowers there. And something else caught my eye too: an advertisement, flashing at the side of the screen. Belarus tourist information! It declared. Visa support! Group tours! Getting up to make a cup of tea, I thought about my family’s relationship with its past. No one from mum’s generation or mine had ever been to Belarus; in Communist times, it had just been too complicated, but even since then, I’m not sure the thought had ever occurred to us. Belarus? Nobody went there.  And anyway, we were British now, weren’t we? But with Stepan’s revelation, it was as if a gauntlet had been thrown down. Should we go there? Could we? I set my mug down, and clicked on the link to the travel site.

*****************************

Three months later, mum and I were in a minivan in the depths of rural Belarus. The previous day, we had called at grandma and uncle Stepan’s home village, Chashniki. Were it not for the one or two rust-spotted Ladas in evidence, it might have been a scene from a previous century.  We’d wandered along narrow, unmade lanes of tiny, brightly painted wooden homes, each decorated with carved wooden lace. The place was deserted, save for a scattering of very elderly ladies. With the help of our guide, a young English language student from a nearby town, and a few photographs that we’d brought, we approached each of them until we found one who remembered Stepan as one of her childhood playmates. A tiny woman in a flowered housecoat and wrinkled, woollen tights, her eyes brightened and she clasped at mum’s hand as she saw the photographs.

Though the memorial site at Khatyn’ had seemed a hive of activity online, today was evidently a quiet day for visitors, with only a handful of cars visible as our minibus crunched over the gravel. We emerged into the fresh air, and stood quietly for a moment. We had mixed feelings about making this visit, mum and I. Our feeling of loss at finally visiting grandma’s birthplace without her was intense and we both felt an acute sense of opportunities missed. Worse than that was now knowing the devastating news that she had received all those decades ago and had felt unable to share with her family.

As we entered the site, we were first struck not by what we could see, but by what we could hear. It was a warm day, and the breeze that rustled the pine and birch trees surrounding the site was benign and gentle. On that breeze came the occasional distant snippet of conversation, or call of a playing child, from one of the other visiting groups. Most curiously, though, those sounds were punctuated, every minute or so, by the sound of many single bells striking in unison.

We made our way down a flower-lined path towards the site. Ahead of us, and over the entrance loomed a giant statue of a haggard, bearded man bearing the body of a child. “The statue here,” our guide explained, “is called ‘The Unconquered Man’. It shows a man called Joseph Kaminsky. He was the only adult who survived of the massacre at Khatyn.”

Walking a slow circuit of the main site, we passed a memorial to each of the villages destroyed during the war. Soft toys and red carnations had been left in alcoves, and candles guttered in crimson glass jars. As we walked, the regular chime of the bells punctuated our thoughts. How on earth, I wondered as I walked, had the survivors in this country, who had witnessed such horror meted out to their own neighbours and loved ones, managed to pick themselves up and carry on with their lives?

Now, the path looped around the site, and into the memorial to Khatyn’ village itself. Our guide had promised to help us locate the memorial to the Maskyeviches – if there was one – and I fished in my bag for the copy of the document and photograph that I’d brought with me.

The sound of the bells had grown louder as we drew near to the Khatyn memorial, and the source of the striking bells now became clear. The boundary of each home in the village – perhaps some 20-25 of them – was marked by a low, concrete wall, and, at the front of each, a small gate stood ajar, as if the occupants might return at any second. And, in the middle of each home, stood a simple bell tower, perhaps some 8 feet high, and on each tower were listed the names and ages of the people who had lived there.

We walked between the homes, and the dense summer grass, studded with meadow flowers, tugged against our calves. I had been trying to master the Cyrillic alphabet since discovering the documents at grandma’s house, and so with some effort, I could make out the names on the bell towers, but none were the ones that we needed. Our guide had walked on ahead though, and when she called us, we found her, document in hand, standing before a house towards the end of the row. “Here it is,” she said, “I think it’s this one – take a look.”

Mum and I stepped through the open gate and looked up at the bell tower and gradually, like a light emerging through fog, the list of names emerged:

Maskyevich, Mikhail, age 34

Maskyevich, Nina, age 31

Maskyevich, Timofei, age 12

Maskyevich, Olga, age 9

“It’s them,” I said to mum. “This is the one.”

I took out the photograph, and we matched each person to each name on the memorial, from the young parents right down to little Olga, grandma’s friend. “Here we are,” they now seemed to say. “You found us.” We had promised Stepan to leave flowers at the memorial, and these we now lay at the foot of the bell tower. And then, we sat for a while on the low wall of the house, and the breeze ruffled the petals of Stepan’s flowers, and tossed the branches of the trees behind us, and the bells struck in unison, and then struck again, and again.  The sound would stay with us long after we had left the place.

Transplant diary 3: not a very patient patient

Once I get home, the biggest problem is still the excess fluid that I’m carrying. I have to travel from the hospital to my home in my pyjamas, as I can’t get my trousers back on, and my sister buys me several pairs of leggings so I have something to wear. I weigh 8-9kg more than usual and I can’t bend my knees properly because of the amount of fluid in them. Once home, any tasks that involve standing up for any period of time – cooking, washing up or having a shower – make all the fluid pool in my legs which then become even heavier.  I do some brainstorming and come up with a few projects that I can work on over the coming weeks while sitting down with my feet up:  one of these is my blog. Naturally, I also succumb to quite a bit of daytime TV as well – possibly too much, I realise, when I wake up at 2 o’clock one morning and all I can think about is the current plot of Home and Away. Friends and family visit and call, do my cleaning and shopping, bring me books and take me out and about and so I am kept occupied.

Even as I say goodbye to the hospital, I know that I’ll be back in 2 days’ time: a key part of my recovery will include visits to the transplant clinic, with urine and blood tests and sessions with the doctors or the transplant nurses, 3 times a week for the first 3 or 4 weeks:  if my life wasn’t already dominated by having to pee in those teeny tiny containers  – which I’ve personally always suspected were designed by men, for men – it certainly will be for the foreseeable future.  Clinic visits will drop to twice and then once a week as I (hopefully) improve over the next 3 months or so.

At my first visit to the transplant clinic a week after the transplant, the doctor removes the dressing over the surgery site and reveals a scar of some 20cm which starts under my navel and curves up to the right like a crooked smile. They don’t remove one of your own kidneys when they do a transplant but graft the new kidney on so you end up with 3. My new kidney is on the right side, and initially I feel slightly constricted, which makes putting on my right shoe a bit tricky.  I raise the subject of the fluid on my legs with the doctor, and my impatience at what I feel to be my slow progress. He points out that I have just had major surgery, and that expecting to bounce back within a week is perhaps a little unrealistic.   Although I know that I can’t have any direct contact with the donor family, I ask if I can send them a card and find out that I can: it needs to be written anonymously, and can be passed on to the family via the transplant coordinators.

Eventually, around 3 weeks after the transplant the fluid has started to come off:  I take my first ‘proper’ walk of around 10 minutes in the streets near my house, and realise things are suddenly feeling a lot easier.  The next day I walk for around 20 minutes, and every day after that I make sure I get out of the house for a while, usually to the local high street. Now that I am moving again things improve much more quickly.  I start taking the train to my hospital appointments, as although this feels like an effort, I think it’s important to introduce some ‘normal’ activities back into my routine.

Even in the early days of my recovery, there are signs of transition: around 3 weeks in, the medical supplies company collects all my unused dialysis fluid along with the dialysis machine. I am given a date in mid-March for surgery to remove the peritoneal dialysis tube (known as a Tenckhoff) from my abdomen (a link below gives information about the different types of dialysis). The decision to have the tube put in last summer was probably the most difficult I’ve ever had to make, and I think I’ve only grudgingly got used to having it in. As the date approaches for the surgery, I find I’m increasingly excited as I look forward to having a ‘normal’ stomach once again – albeit one which now bears an interesting patchwork of scars.

I am aware that these blog posts, written as they were in the grim early days post-transplant, have probably been a bit of a misery memoir so far. So I am glad to report that as the days go by the benefits of now being off dialysis do start to filter through to me.  Although dialysis marked a huge change in my life, once I had adjusted to the new routine and worked out how to manage any glitches that occurred on the way, I did get used to it. I was able to return to work full-time, go out hiking, have weekends away and a social life. That being said, there are things I definitely won’t miss about it – these are just a few:

Having to worry about constipation all the time – (did I mention how glamorous being a kidney patient is?), as this can obstruct the dialysis tube or even cause it to move.

Not being able to just jump in the shower without having to change dressings, clean exit sites, worry about hygiene etc (ditto swimming).

Having to watch my phosphate intake (on dialysis I had to restrict my intake of phosphate-rich dairy products, eggs, nuts and other foods).

Being woken up abruptly in the small hours by the alarm on the APD machine because of an obstruction or because I’ve rolled on the tube.

Not being able to jump out of bed to go to the toilet in the middle of the night, but having to wait until the machine reaches the right stage of the cycle and then detaching and re-attaching myself to the machine.

Not being able to go away for weekends or holidays without having to take or organise dialysis supplies.

Having to give myself EPO injections into my leg to treat anaemia – surely the least fun you can have in your bedroom with your trousers off!

I could go on, but you get the picture.

In closing this third diary entry, I would like to say one more thing. For all that this has been a gruelling experience, and not one I’d be keen to repeat any time soon, I would never want to forget how unbelievably fortunate I am to live in a country with a highly developed system of healthcare that – while not ‘free’ – this is one of the things our taxes pay for, after all – is free at the point of need.  Not only was I able to access the treatment that I needed in the form of dialysis, I was able to choose the type of dialysis that was best for me and the way that I live.  There are an awful lot of countries in this world where such services simply aren’t available, and where a person with my health needs would either have been left to die or would have only a limited range of treatment options. My personal view is that paying taxes is part of the privilege of living in what is, despite its problems, a relatively stable and well-developed country, and I pay them gladly. Moreover, the system for organ donation and transplants in this country is highly developed and well thought out. Organs are allocated according to a number of criteria, but these don’t include your ability to pay or who you know.  The system that we have reflects what can be achieved when the compassion and kindness of strangers – the donors and their families – a high level of medical expertise and ethics, and a well-developed health service combine. It is definitely something to be grateful for.

Types of dialysis: http://www.nhs.uk/conditions/Dialysis/Pages/Introduction.aspx

Information about organ donation: https://www.organdonation.nhs.uk/

Beth’s story www.rememberbeth.co.uk

Goodbye, dialysis machine and supplies…what will I do with all the space?

Short story 1: Moving on, fitting in

I’m not sure if creative writing is my thing, so this short story is a bit of an experiment. I wrote it towards the end of 2016 as part of a short story writing course – getting it on paper was a bit tortuous!

James took the jacket from his new suit from the hanger, and slipped it over his shoulders. Contemplating himself in his wardrobe mirror, he seemed to see an entirely different James to the one that had been standing in his faded boxers a few minutes earlier. Business-like. Someone to be taken seriously. The kind of person who makes serious, grown-up decisions about serious, grown-up things.  The dark navy fabric set off the paleness of his newly-shaven chin, and his hair, cut Action Man-short the previous week for the first time in 4 years, barely brushed the collar.

With a final glance at his reflection, he took off the suit and hung it back on the hanger, taking care to shake out the folds so that it would not be creased on Monday morning.  With significantly less care, he grabbed cargo pants and a turquoise t-shirt from the chair where he had dumped them the previous night. The t-shirt sported the slogan ‘Adopt a Puppy – ask me how!’ in white printing on the front, and the charity’s logo of a sad-eyed terrier on the back. Grabbing his bag, a pile of the charity’s sign-up forms, clip-board and pen, James headed downstairs.  Pausing only to dump his cereal bowl in the kitchen and shout a quick ‘See you!’ to his housemates, he headed out of the house for his final ever shift.

Damp, cool morning air stung James’s eyes a little as he made his way down the street to the bus stop. For the last year or more, his journey into the city centre had been a time for him to pursue his job hunting activities, a never-ending round of emails, checking the day’s job advertisements and calling companies to follow up on his applications. This morning, he relished the sudden freedom that came with finally having a proper job on the horizon. He allowed his mind to wander instead to the events of the past year. Since the time of his own graduation, another round of happy, excited new graduates in their black gowns and hats had spilled from the town hall, disoriented-looking parents in tow.  It had been a year of endless visits to the Careers department, browsing racks of leaflets called Get that Job! illustrated with photographs of intense, ambitious-looking types, their faces illuminated by the glow of a computer screen.  One by one, his university friends had shaken off the camaraderie of all-nighters in the library and sharing tips about where to get the cheapest loo roll and moved on with their lives. They had got jobs in Cardiff, Birmingham, even London, and with those jobs had come the first prized trophies of adulthood: moving out of shared houses into flats with girlfriends and boyfriends, a car that wasn’t borrowed off their parents, incomes which allowed them to do more than just subsist, and, more than anything, a sense that life was actually going somewhere. Once or twice, he’d met his old housemate Baggy for a drink after work.  The first time they’d met up, Baggy had been only three weeks into his role as a trainee accountant and seemed anxious to portray himself as the adult he didn’t yet feel himself to be. He looked self-conscious in his new suit, like a 15-year-old trying to sneak into the pub undetected. Baggy had covered his lack of confidence up with bluster, referring to the chief executive by his first name and dropping the names of the company’s better-known clients into the conversation.  James suspected that it was no accident that he still sported his work ID card slung fake-casually around his neck, that he was waiting for James to notice it and be impressed. Over the following months, his friend had stopped signing his texts ‘Baggy’ and started using his real name, Tom.  The next time they met up, some six months later, Baggy had dashed into the pub late, laptop bag in tow, full of apologies for the meeting that had overrun. Later in the evening they were joined by his new girlfriend, a trainee management consultant, and they told him their plans for their upcoming holiday in Thailand. James had left the pub that night feeling like someone who was still tying his trainers at the start of a marathon, while the rest of the field had set off without him and were half way to the finish line. Suddenly, his ancient, tatty rucksack and greying trainers marked him out not as a member of a cool and happening group of fellow non-conformists but as an outsider among his peers.

The doors of the bus hissed shut behind him, and James headed up the hill to the place that had been his patch for the last year.  He wondered what it would be like no longer to walk this stretch of pavement every day. Its quirks and flaws were as familiar to him as the pattern on the patch of wallpaper next to his pillow at home: the set of wobbly paving slabs outside the charity shop where he’d once tripped and spilt takeaway coffee all over the woman in front of him; the pavement by the bus stop dotted with dark spots of discarded chewing gum like a grubby dalmatian’s coat; the Big Issue seller with red-rimmed eyes and acne-scarred cheeks who greeted every passer-by who dared make eye contact like an old friend.

As he approached his patch, James wondered whether he had the energy to spend this final afternoon trying to persuade complete strangers to engage in conversation with him, much less to get them to commit to donating cash to a charity in which they had zero interest.  He had always known that, in spite of his training, his fake bonhomie and cheesy opening lines barely concealed his discomfort at having to approach complete strangers.  For the most part, passers-by responded with a glassy-eyed stare that went just past his right ear and a stiff, fixed half-smile as they kept on walking.  If he was less lucky, they would just tell him to sod off.  When he did manage to persuade someone to stop and listen, he felt a brief spike of relief. But then nine times out of ten the person would shift from foot to foot while he began his pitch, gradually backing away from him before confessing that, sorry, they weren’t really interested thanks, or that they already supported another charity.

By the end of his shift, James had managed to stop a grand total of two women and one couple. The couple turned out to be French tourists, who, in halting English, informed him part way through his pitch that they only needed directions to the city’s art gallery.  He had more success with the two women. The first wore a raincoat in a luminous, Dairy Milk purple which caught his eye while she was still at the top of the hill. As she got nearer, he could see that she also wore black patent heels and had a bouffe of dark, backcombed hair reminiscent of Joan Collins. Crucially, she was also accompanied by a tiny dog of the kind that Paris Hilton might keep in her handbag, and which she held by a matching black patent lead.  Her willingness to sign up to donate was, he suspected, the result in part of several glasses of wine over lunch, and her signature wobbled across the bottom of the signup form.  Lady number two was that rare surprise, someone who seemed genuinely interested in the charity’s work and who allowed him to reach the end of his pitch uninterrupted. The small, practical-looking woman introduced herself as Jean. She had, she said, worked herself as a dog breeder. From her outfit, James could almost have guessed that she still did: a grey, cropped, no-nonsense hairstyle was topped by a khaki cotton hat with a wide brim. The face was ruddy from being outdoors in all weathers, a deep groove on either side of the mouth giving her the appearance of an elderly ventriloquist’s doll. A brown and cream checked flannel shirt poked from beneath a padded gilet, also khaki, and she wore wellingtons despite the dry day. She poked around in the pockets for her glasses so that she could read the material and the form, and managed to produce both an old packet of dog treats and a lead before finally locating them. Jean asked a number of searching questions about the charity’s work, far more than anyone had before, and James inwardly rolled his eyes at the old person’s need to have all the facts before signing on the dotted line.

His shift finally over, James headed back down the high street to the charity’s tiny office. He had stuck out the job for longer than any of the other chuggers, and the administrator stopped to ask about his new job as he handed over his ID card, spare signup forms and clipboard. Emerging back on to the street, rather than heading straight home James took his time sauntering through the city’s early evening streets. The sense of dread and failure that had accompanied his job hunting, the hundreds of applications that had led nowhere, the hours of networking and phone calls and research, began to crack and shift like tectonic plates in motion.  He observed the commuters that brushed past him, intent only on getting home and leaving the working day behind, and relished the thought that, come Monday, he would be one of them.  He was almost beyond caring if the job turned out to be boring, or didn’t live up to his expectations. At the very least, with a regular wage, he could now make plans for his life, feel as if he were moving forward, join with his peers in talking about office politics, holiday plans, maybe even buy a car. He would, finally, fit in.

Arriving back home, James called a quick hello to his housemates, grabbed a beer from the fridge and headed up to his room.  He pulled off the charity t-shirt and shoved it in the washing basket – he would wash it later. For now, all he wanted was to crash on his bed, gaze out of the window and watch the sun set on his old life.

 

Transplant diary 2 : Sleepless in ward 8b

There is little I can do the day following my transplant beyond lying prone and observing the comings and goings of the ward. I have a catheter, so my urine output can be monitored (the glamour!), and a neck line through which drugs and fluid are administered. In addition, I have a drain into the operation site, a blood pressure cuff on my arm which takes periodic readings, and a pulse monitor is attached to my finger.  I have a morphine pump for the pain which I can administer myself, and this, although effective, also sends me into a doze every time I use it. I am not used to being so inactive, but attempts even to push myself up the bed need to be undertaken with care and cause a lot of pain. I manage to speak to my sister on the phone, and suggest that she visits the following day when I will, hopefully, be more awake.  At least I am able to eat and drink now, having been nil by mouth from 5.30 the previous morning, but my appetite is severely dented in the aftermath of the anaesthetic. However, I do have a thing for tea, and drink lots it served in a sippy cup.

Various members of the medical team visit throughout the day, and inform me that thus far things are looking good: the new kidney went pink as soon as it was attached to the blood vessels, and my creatinine levels have already fallen.  The nurses and doctors are, for the most part brilliant – professional, approachable and willing to answer all my questions, even if most of the doctors are so young and fresh-faced they look like they should be in school uniform (evidently I have reached that stage in life).  Each day one of the devices or tubes will be removed from my body, with the last being the catheter. Following an ultrasound the morning after the surgery to check that there is no build-up of fluid around the new organ, the drain is removed – one down, several more to go.  There is to be no driving for the next 6 weeks, and then I all being well I will have a second operation to remove the dialysis tube from my abdomen.

Apart from boredom and inactivity, my biggest problem while in hospital is the inability to get a good night’s sleep.  A number of factors combine to make this a problem. Not only is the ward stiflingly hot, but some of the new drugs I’m taking cause hot hands and feet; even throwing off the thin hospital blanket, I can’t seem to get to a comfortable temperature. I am on an acute ward just opposite the nurses’ station: the lights never go out completely (and periodically someone will switch them on and forget to switch them off again), and voices outside the ward are easily audible.  All in all, the biggest problem is noise. The aforementioned monitors periodically ding and ping their way through the night – I am never sure whether they are supposed to do this, or if the noise is some kind of alarm. A busy nurse might take 10 minutes or more to get to you to stop the noise, only for it to start up again another 10 minutes later. Further down the ward, another patient calls out to the nurses throughout the night, and won’t stop until someone pays him some attention.  From time to time, a patient will press the call button which sounds an intermittent alarm in the corridor – quite understandably the nurses can’t always attend immediately, but this in effect means yet another alarm which can go on for 10-15 minutes before someone is able to switch it off.  I begin to wonder whether medical staff become so used to these sounds that they become a kind of white noise for them. However, for the patient, the incessant noise is absolutely infuriating, and I find myself becoming increasingly frustrated and angry. On day 3, I have had so little sleep – and therefore so little opportunity to recover from the anaesthetic – that I start the day with a headache and nausea and a severe sense of humour deficit.  I have to fight to keep the bitter-tasting steroid tablets down during the pre-breakfast drugs round, and lie in bed tearful and generally feeling very sorry for myself.

Eventually on the Sunday I am able to get out of bed for a while. I am still in surgical stockings, but now have a build-up of the additional fluids that I’ve been given to help kick-start the new kidney. I am normally a size 10, but my now enormous upper legs bulge over the tops of the stockings, and the skin from my waist downwards is hard and tight. Determined to start shifting the fluid, I very gingerly try taking hourly walks up and down the corridor and the flight of stairs outside the ward. The catheter is still in, so this is a delicate operation to say the least, and I keep away from the public areas of the hospital where a woman waddling around carrying a bag of urine is likely to attract unwanted stares. For all my attempts at activity though, the fluid refuses to shift until, around 2 weeks post-surgery, it begins to fall away in tiny increments.

Five days after the surgery, all still appears to be going well, and I am deemed fit enough to be discharged from hospital.  Gradually all the bits and pieces of equipment that I’m attached to have been removed, with the horrible neck line and the catheter the last to go.  All the medication that I was taking on dialysis has been stopped, and I am sent home with a carrier bag  of new drugs, the names of which sound either like a Roman leader (Tacrolimus was surely a contemporary of Caesar Augustus) or a holiday resort in the Balkans (ski break in Aciclovir, anyone?)  These drugs are my new best friends, and I neglect to take them – or simply forget – at my peril; without some of them, my body could reject the new kidney and so I will take them permanently. There is a steroid and an anti-rejection drug, anti-virals, aspirin to prevent blood clots, a blood pressure tablet and a tablet to protect my stomach, along with 2 types of painkiller – 9 items in total, although some of these will be phased out in the first few weeks. I live on my own with no family close by, so the hospital calls a taxi to take me home, and even though I have mixed feelings about going home to an empty house, I can’t wait to get back to my own space.  Once home, I unpack, make a cup of tea and collapse on to the sofa with a massive sigh of relief. It is bloody marvellous to be back.

Summer school, Novosibirsk State University 2011: Novosibirsk to Tomsk by bus

In the summer of 2011, I spent 3 months at the Russian language summer school at Novosibirsk State University in western Siberia to work on my language skills prior to starting an MA in translation. This short account describes the bus journey from Novosibirsk to Tomsk that I took one weekend.

It is a hot, sticky afternoon in Novosibirsk, and I am pushing my way through the crowds at the bus station.  We assemble on the dusty, melting tarmac beside the bus to Tomsk, and the crowd surges as we start to board.

In front of me, a lady is helping her elderly mother onto the bus.  The old lady is wearing the archetypal country babushka outfit of flowery nylon dress, woollen tights and galoshes.  Straggles of grey hair emerge from beneath her headscarf.  She is shaky on her feet, and the daughter helps her heave herself up the high step onto the coach.  I climb on behind them and find my seat.  Settling myself in, I notice that the coach’s windscreen is extravagantly decorated with swags of flowered material edged with tassels, the overhead shelves with lacy, blue curtains.

The bus pulls away, and we cruise the suburbs of Novosibirsk. First, the factory districts of crumbling concrete and red-and-white chimney stacks.  Then, over the railway lines to dacha country: the clusters of tiny, wooden houses and kitchen gardens where this nation of apartment-dwellers escapes to for the weekend.   Occasionally, there are new additions to the landscape: the detached houses of Russia’s new rich. Incongruously, the Russians have borrowed an English word for these substantial dwellings, calling them ‘kottedzhi’.

My previous experiences of the Russian countryside have been depressing: country lanes and river banks littered with discarded beer bottles, cigarette butts and old tyres.  However, today, when finally we make it into the open Siberian countryside, it is a delight: an endless, rippled sheet of teal and bottle-green pine forest, alternating with the mottled silver and khaki of birch trees.  We pass villages of weathered log cottages, and, once or twice, old signs for collective farms in the clean, curved typeface of Soviet times: once proud but now barely noticeable, faded and coated with dust from the passing traffic.

After two-and-a-half hours, we stop at what could loosely be called a service station.  There is no WH Smith, Costa Coffee or amusement arcade, but there is a petrol station and a self-service cafe and some surprisingly OK toilets, which we each pay ten roubles to use.  Once toileted, fed and watered, I join the other passengers milling listlessly around the car park.  The truck stop evidently provides an income for those living close by, and weather-beaten locals in cheap nylon tracksuits and flip-flops have set up low tables displaying goods for sale:  mustard-yellow, forest-picked mushrooms and birch venki , the bunches of twigs that Russians use to beat themselves in the banya.  A grey-haired man stands next to a dusty Lada. The car’s bonnet doubles as his shop window and is covered with buckets of tiny wild strawberries.

While stretching my legs, I look around.  The surrounding landscape is devoid of signs of civilisation, the truck stop itself a tiny dot in the Siberian vastness.  I wonder if this is the closest I’ve ever been to the middle of nowhere.

journey-to-tomsk

Transplant diary 1

On January 27th this year, I was fortunate enough to receive a kidney transplant after just over 2 years on the waiting list and 6 months on dialysis. This is the first part of my record of the experience.

No one likes the middle-of-the-night phone call, do they? You jerk awake and shoot out of bed to answer, all the while running through your mental tick list of potential scenarios involving serious illness, accident or death.  That being said, when my own phone rang at 4am one Friday at the end of January 2017, my first thought was ‘Better get that,’ swiftly followed by ‘Oops, I can’t.’  I was on overnight dialysis, and although I was well versed in the routine for detaching myself from the machine, it wasn’t something that could be accomplished within the 8 rings before the answerphone kicked in.  The caller hung up, but as I lay there with my heart thumping, I noticed that the light from my mobile next to the bed was also flashing.  The news that followed was, thankfully, not about accident or death: the caller was one of the transplant coordinators at my local renal unit telling me they had a kidney for me. Could I get myself ready to be collected by 5.30?

It helped a little, I suppose, that this was not the first such call that I had received. A similar call the previous September, albeit at the more sympathetic hour of 9 in the morning, had led to a day of waiting around, tests, and yet more waiting around in the renal ward before being told that the kidney was not good enough for transplantation.  Nonetheless, this time I spent a good 10 minutes staring blankly at the ceiling and mentally working through the things I ought to have been doing that day before moving into action. Work was at a frantically busy stage, and my team mate was about to go on maternity leave, so I even briefly considered saying ‘Thanks, but no,’ before realising just how dumb that would be. By 5.30, I had packed a bag with everything I might possibly need for a stay in hospital, shaved my legs (well, of course!) and done the previous night’s washing up, and all that was left to do was to jump in the waiting taxi and head off into the darkness.

Hospital routine marches to the beat of its own peculiar drum, and so it was that, having arrived at the renal ward at 6am, at 7pm I was still lying on my bed, hungry and thirsty and attractively attired in blue-and-white checked hospital gown and elasticated stockings and wondering if, once again, it was to be a no-go. There being no mobile phone signal in the ward, I had spent the day wandering around the hospital trying to update friends, family and work as to where I was and what was happening, and cancelling arrangements for the coming days. Periodically someone from the medical team would come and either take blood, give me an injection, feed me drugs or have a chat about what to expect, but come the afternoon most of the activity had tailed off. I was just resigning myself to the possibility that I might be sent home again when two nurses turned up and told me it was time to go to theatre.

Here’s something I have discovered about people’s expectations of how dialysis patients will react when they get to transplant. When I was called in for the transplant that never happened last September, two nurses in succession asked if I was excited. People know that being on dialysis can be hard and disruptive to normal life, so they think you’re bound to be ‘woop woop’ at the prospect of a transplant. Well, I wasn’t ‘woop, woop’, actually I was really scared.  One thing is certain once you have kidney failure:  from that point on and for the rest of your life, nothing is certain at all. A transplant can mean being relieved of the routine and restrictions of dialysis and a return, to a large degree, to ‘normal’ life. But I had started dialysis just 6 months earlier which was in itself a huge and difficult transition, and I had only recently begun to feel at ease with the new routine and the effect it had had on my body.  On top of that, it can take months to recover from a transplant and to adapt to a lifetime on a strict drugs regime. Transplants can also fail, and there are no guarantees of how long they will last – it’s not uncommon for a kidney patient to have more than one transplant in their lifetime.  As I tearfully explained to the anaesthetist while waiting to go into theatre, my family history doesn’t help much: my aunt almost died post-transplant back in the ‘90s, and my mum’s new kidney lasted just 8 years before it began to fail.  Both they and their middle sister ultimately died of the effects of renal disease.  The medical team who have looked after me in recent years have been brilliant, and the services efficient and well-organised. However, in my experience the focus is entirely on the physical aspects of treatment, with little or no attention paid to the emotional or psychological effects of going through such a huge life event; nobody asks you how you feel about what’s happening to – or being done to – your body. And all these things are hard to say when you know that the reason that you have this sudden chance at a new life is another family’s sudden and tragic loss of a loved one; I had chosen not to hope for a transplant for that very reason.  In the end, all I could do was choose to trust the medics who said that this was the best long-term solution for me, and grit my teeth and go ahead.

Coming round in the darkened recovery room after the transplant is a succession of blurred images.  I strain to see the clock, and realise that it is just after one in the morning. I have an intense pain in my right side and groin, and any attempt to move induces nausea.  My mouth is like sandpaper, and a nurse periodically offers me sips of water through a straw. The nurses want to give me a chest x-ray, which will involve lifting me up to put a metal plate behind me. Each time they go to move me, I ask them not to, but eventually they have to go ahead, and the movement makes me retch painfully into a cardboard bowl.  Once back on the ward, and despite the anaesthetic, I wake repeatedly as the monitors for my drip, heart and blood pressure ping and bing throughout the night.  That was day one.

Information about organ donation: https://www.organdonation.nhs.uk/

National Kidney Federation: http://www.kidney.org.uk/

Polycystic Kidney Disease Charity: http://www.pkdcharity.org.uk/