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/

Teaching English in Russia 3: A first brush with ‘new’ Russians

The lift dings, and from it emerges a stocky girl of about 10, and a weather beaten-looking man in a leather jacket.  Taking the man to be the girl’s father, I shake his hand and, as I am in a hurry, mentally file his slightly bemused expression for later.  The girl and I walk to the classroom, accompanied by the gentle swishing sound of her warmly padded winter trousers.  I note the Western brand name on the side, a brand outside the pocket of most of the girl’s contemporaries.

This is Sasha, my latest one-to-one student, my Waterloo and my catch 22 rolled into one.  I am to teach her English, a private lesson once a week, and prepare her for an English language exam.

My predecessor, a young American woman, has left me a note to prepare me for the onslaught of Sasha.  ‘Sasha is a clever little girl,’ it begins ‘who doesn’t like to be told what to do.’  It lists the variety of methods my young charge is likely to use in an endless quest to take control of lesson time.  The mention of the name ‘Sasha’ or worse, ‘Sasha’s mother’, are bywords for eye-rolling and tutting in the staffroom – but no offers to take her off my hands are forthcoming and would anyway have been pointless:  Sasha’s parents want only the best for their children, and, in this small city with few foreigners, the best is a recently arrived Englishwoman with no experience of teaching children and a recently-acquired 3 month TEFL course under her belt.

Our time together quickly establishes a pattern.  On entering the classroom, Sasha invariably grabs a board marker and begs to tell me something that happened at school that day, a story which simply has to be illustrated on the board.  Once seated, she rips open a giant packet of caramel-filled waffles purchased from the vending machine downstairs and begins to cram them into her mouth.   Her cheeks, tanned from the regular visits to the family’s Spanish holiday home, become smooth and rounded like burger buns as she chews.   She speaks English with surprising fluency for a child of her age – but not as well as she – or her parents, I suspect – would like to think.   The reason for this quickly becomes clear.  Pressed to carry out written practice exercises for the exam that her parents want her to take, she spends a good 10 minutes hurling herself around the classroom in a rage, a calf in a pen threatened with the stun gun.  After much persuasion, she carelessly dashes off the required 30 words and then challenges each of my corrections.  The eyes that she fixes on me have a wide, intense stare, like those of a bird of prey, hunting for a weakness to exploit, the eyebrows as bushy as those of an elderly politician. At the same time, I also catch glimpses, in the perfect skin and tumble of thick, wavy hair, of the rather sultry young woman that she is likely to become in a few short years.

My weekly sessions with Sasha continue to be tortuous.  I am completely wrong-footed in the face of her behaviour.   Despite my experience of power games in the corporate world, I am astonished at the level of power that a child 30 years my junior has to make me feel inadequate.  I also feel guilty – surely it is wrong to dislike a child as much as I dislike Sasha – and, on a good day, slightly sorry for this child and her younger brother, also one of my students, who, at the end of a school day, should really be out playing.  And, most shamefully, I frequently fantasize about fighting fire with fire, to subject her to the same disdainful glances and catty remarks of which I am often the recipient (“Do you think you look nice in that colour?”)  Bizarrely, though, as time goes on, I begin to realise that, despite her attempts to show the opposite, I occupy an important part of this child’s life.  Sasha begs me to become her friend on vKontakte, Russia’s social networking site. And in a country where a woman of 25 is considered to be an old maid, she and her brother are fascinated by my single status. “Where are your children?” they ask.  “But why aren’t you married?” and (my particular favourite) “My mum said, ‘When is your English teacher going to get married?’’’

This is my first real brush with the phenomenon that is the ‘new Russian’, or at least its offspring.  The things that would have got you to the head of the queue in Soviet times – the party membership, the war medals – have been superseded by designer labels and 4x4s. Sasha and her parents regard themselves as a cut above the ordinary Russian, and those who work for them are their staff. In only-recently-capitalist Russia, Sasha and her family are living a life of incredible privilege, and they know it.  Theirs is a life of private school, regular foreign holidays, and, that ultimate new Russian status symbol, a mother who doesn’t work. Not for this child daily journeys on a dingy and crowded trolleybus with the rest of humanity: instead, she is able to observe the streets at one remove, from the back seat of a shiny, black 4×4 with tinted windows.

At the end of our first lesson, I ask Sasha, “Who was that man who was with you earlier – was he your father?”  “No,” she replies, tutting and rolling her eyes. “He’s our driver.”

Teaching in Russia 2: Hats

I don’t remember having many hats as a child, but there’s one that particularly sticks in my memory:  it was a white, fluffy beret with a pompom on the top and a red and navy stripe round the rim, and I hated it.   I hated it, not only because it was made of stuff that made my head itch, but also because I was made to wear the hat by my mother, and so it became a symbol of the power struggle between her and my 5-year-old-self.  These days, apart from at weddings and funerals, a hat is a comparatively rare sight in the UK, where I come from: as a rule, the relatively mild climate there means that warm headgear may not be required to survive the winter.  Even if it was, many of the younger generation have discarded this item of clothing as a wussy object worn only by those still tied to their mothers’ apron strings.  Not wearing a hat has become an act of rebellion, and a sign that, however low the temperature, you’re hard enough to cope with it.

In a Russian winter, it’s not possible to have such scruples.  It’s painful enough having to leave your face exposed at -20, so going bareheaded is out of the question. And anyway, anyone who dares take such a risk is likely to suffer a fate worse than frostbite: a dressing-down from a passing babushka.  So it is that the Russian population – women in particular – embrace the hat and celebrate it in all its different forms.  Walking the streets here you will see a vast array of different styles, shapes and materials, with fur (another novelty for the average Brit) by far the favourite.  Buying a hat is a serious business, and simply plonking the hat on your head and admiring yourself in the shop mirror just won’t do: any hat shop assistant worth her salt will fuss around you, tweaking the hat at various points so as to get exactly the right look.

Since arriving here, I have made something of a hobby of studying the different types of hats and head coverings worn by my hosts, and have found that they can be more or less divided into 4 looks: the pompom, the Davy Crockett, the Banana Split and the Romantic Heroine.

The pompom is round and fluffy, and should ideally increase the circumference of your head by at least 5 centimetres and give it the appearance of, well, a rather large pompom.  The Davy Crockett may well resemble the pompom, but for added interest a number of tassels, smaller pompoms or even the odd animal’s paw will have been attached to the top or back of the hat.  This gives that hat its distinctive resemblance to Davy Crockett’s famed raccoon tail hat.  Our third type is the famed Russian ‘earflap’ hat.  This can be a modest affair, such as those worn by army officers and policemen with the earflaps neatly tied on top.  However, the more extravagant version has huge earflaps, often left untied so that they flip out on each side of the wearer’s head.  The wearers thus bear a startling resemblance to the droopy-eared singing dog in the children’s show, the Banana Splits. (Those with time on their hands may check out www.bananasplits.com to make the comparison).  Our final look is easily the most glamorous: the Romantic Heroine wears a flowing fur coat, her face fetchingly framed by the hood – all in all, a look not dissimilar to Meryl Streep’s in ‘The French Lieutenant’s Woman’.

Of course, with the arrival of spring the hats are being put away for a few short months, but I look forward to next winter when hat season will be with us once again.

dscf0202The author attempts, albeit unsuccessfully, to model the romantic heroine look.

This article first appeared on www.e1.ru, the Ekaterinburg city website.