Another day, another clinic appointment out of the way, and I thought I'd let you know how the lovely shiny family kidney's doing ....
The best news I could possibly relate is the news I'm about to give: my blood results this morning are, in the words of my absurdly dashing surgeon, 'excellent'. This is the best use of the word 'excellent' I've heard since the last time he used it (The occasion is also laced with relief. Last week there was a dip in one of my kidney function indicators and some dread entered the picture for a few days. But it turns out some minor ups and downs are expected (the rollercoaster continues!). So now I'm happier.
If a bit sore. As my brother points out, the favourite line wheeled out by medics hearing that something still hurts is, 'this is perfectly normal'. In fact it's become something of an in-joke. "My legs don't work and I haven't been to the toilet since June". Perfectly normal. "I can't breath, etc" - Perfectly normal. "I think I've died". Perfectly .... It's tempting to test them out just to get a feel for the range of normality we're dealing with here.
I was wheeled into unknown territory again on Monday morning, when they put me under for a hour and removed my dialysis line (which had been plumbed into my neck for 5 months) and a stent holding open the ureter of Paul's kidney where it's been attached to my bladder. They go in through a part of you you'd rather they didn't. All the fun of the fair! I'd like to say the general anaesthetic was routine, but I begged them for it, leaving no trace of pride whatsoever. And now, a few days later, it still hurts, a bit. But I'm not worried in the least, because it is almost certainly Perfectly Normal.
But the overall trend, at this point in time, is solidly positive.
I must never lose sight of what has changed in my life - I have a fully operational kidney where a few months ago I was dangerously ill and spent an average of 16 hours in a dialysis chair every week, and the rest of my time thinking about it and the fact that doing anything else with those days, or much with the days around them, was impossible. My brother, and the team of bafflingly coolheaded people who operated on us, have made this possible. I have been given my freedom. (And a lot of pills to take - you can't have everything!).
Paul is back at work now, and more his old self, after several weeks of limping around his house in tracky bottoms. The whole thing was really tough on him - I don't think they warn donors about how much it's going to take out of them, for obvious reasons (run away!), and the blow to a previously healthy person is something of a blind-sider. I won't go into details, but nothing below the navel feels good for some time after they cut you open and remove a substantial part of your inner workings. I felt bad for him, almost as bad as i felt for myself in those first weeks, as I mentioned before. I also remember saying something about 'needing to break eggs to make an omelette'. Well, break some we certainly did.
But, back to that omelette! My twice weekly clinic sessions at the Royal Free in Hampstead will soon become once weekly, and I'll be able to think about going home to the boat. I've been staying with my mum in Crouch End for the last 6 weeks, and we're still talking, after some periods of not - it's been a challenge for two independent people, under pressure, to share a small space in scary, testing and uncharted circumstances. When I'm not being a moody git I remember to feel grateful. It pushed mum like nothing else to have both her sons in an operating theatre at once.
The boat and the river seemed a light year away when i was in hospital, and during the first weeks at mum's. I could not believe, when i was sleepless in a strange, distress-filled ward, that the experience belonged to the same person, the same life. For a time I felt utterly alone. Who will shine the light for you, when you feel this lost? Because I could not. It was utterly humbling and I wonder if I will do better, another time. No contact from the outside helped. Years of meditation (admittedly ill-disciplined) did not seem to count for much. Or did they ultimately, finally, see me through, and out of those exit doors into the world?
Two months later, life is thankfully shifting. I think about work again, (and looming penury), so my current flurry of activity must bear fruit if I'm to stay afloat (no pun inteneded). I can almost imagine home again, and remember how I filled my days on 'Odin'. How I've missed that, and my happy solitude.
Back in Suffolk the leaves will be turning, the swallows will be gone and dew will be settling on Ferry Quay. The river is colder now and night mists no doubt hang low in the harbour. I wasn't there to see the harvest moon. But I will be there to take on whatever winter throws, while we ride the relentless tides and scattering winds.
They are reassuringly, ultimately nothing personal.
Posted October 16, 2017 08:40
Coming up for air
Well, greetings from the other side - of the operation, i hasten to add (no, that's not me in the picture - there have been concerned enquiries) . Those of you who got my email after i was discharged will know that as an ordeal the procedure didn't disappoint, but that the most important thing - the installation of a working kidney - has, so far, mostly gone extremely well. (The only hiccup came on Day 4, when the aforementioned organ toyed with not doing so brilliantly. That day of hilarity passed - let's hope it continues to behave itself).
And one is tempted to say 'for the rest of my days'. In this game though, it's one day at a time - there are too many hair-raising stories out there to be blasé. So the best move seems to be to keep my head down, and just get on with it. And be happy! I have a kidney that works today! And in all likelihood, it will tomorrow! (I foresee a lot of exclaimattion marks in this update - and a few question marks no doubt).
So, what's it like having your sibling's right kidney tucked in above your waistband? Is it always on my mind? Am i aware of another's physical presence? Do i feel - different? Well, actually ...not really. It's strange, but I think I've been so preoccupied with survival and the basic functioning of my battered body that I've never made a distinction between my new bump and the rest of me. All I can say is that I have felt entirely ready to absorb him. This can only augur well for our future together.
My brother Paul is currently enduring his own hardships. A formerly healthy, capeable, problem-free man has been reduced to shuffling around in tracky bottoms, fighting to regain appetite, a servicable night's sleep and some sensation in his nether regions. (I empathise to a point). His trials are almost enough to keep me awake too. Poor paul. Saving my bacon has come at a price. We saw each other a couple of times on the hospital ward. Ghostly shades of our former selves, we managed a smile and a laugh of sorts, not so easy when you're carrying a big bag of bloody urine. At that point i felt amost as bad for him as i did for myself.
There were times in the immediate aftermath of the operation when i wished, frankly, I was anyone else, anywhere else. And permanently if need be. The grim cocktail of pain, insomnia, incessant ward-clamour and anxiety about how this was going to pan out (and worry for my brother too) for a time became almost too much to bear. The new medication alone was playing havoc - try 10 days on the trot with a couple of hours doze-sleep, and road test the experience - but first, stick a tube up your Johnson! Bed 22, Ward 10 South, Royal Free, was something of a necessary hell.
But somehow, it passed, and i did not crack up, and they let me go one day. Discharged to my mum's (in Crouch End), I practically flew out of there on wings of light.
My only enduring complaint is that i had to leave my belly button in the operating theatre. No really. They bisected it, with the help of their headlining robot, when they told me they wouldn't. I will never see its inny-yet-outy loveliness again. It seems churlish to mention at my twice-weekly clinic . Maybe they've kept it for me.
Tonight, the boat sits heavy in the harbour, under a sliver of moon, a westerly at her flank - mooring lines will strain, creak and crack. The rigging in the boatyard will play in the wind, clickety clickety click, and the tide will slip silently over the shining mud.
And i will not be there.
Posted September 12, 2017 15:07
Deben estuary, Suffolk
I’m making a journey today – by nose. It’s unintentional - the best journeys often are, I find. Because, it’s not what I’m seeing on this walk from Woodbridge to Waldringfield that holds me, but what I sense on the air – atomised and attached to waking dream.
Smell is so powerfully linked to memory it’s a wonder it has a purpose in the present, at all. A whiff will waft us across space and time – in a heartbeat. Which is amazing. No wonder I keep losing my sandwiches.
Which has me searching for the map. Where am I? I’m approaching a strip of beach at Kyson Point – a wind-scoured slice of headland on the River Deben, about 8 miles from the sea – following a path that will skirt a shimmering mile of broad estuarine creek, and take me through woods and wheat fields, and down bushy sheltered lanes. But right now, I’m standing in a leaf-tunnel of hawthorn and willow, in the shade, where all the best smells live. But what do I detect that carries me so? I’m not sure. Everything?
Grass, brackish water, hot bracken. Worms, damp stone, dung and green. Cows, and beetle carcasses. Sun on bark. Chlorophyll. Sighing leaves and corpse. Meadow flowers, seaweed and hay – hint to stench, life to death; from giddying rush, to subtle sway.
But I’m not certain, any more, even that it’s me doing the smelling. Disembodied, I’ve stopped in my tracks. I am once more the boy who first sensed such things – all else is suspended. Could odour be linked to ancestral memory? Perhaps the people who walked this way a thousand years ago – to fell the trees to build the ships to bury their lords at Sutton Hoo – nosed the air as I do now, and thought of their own childhoods, throwing play-spears of bracken too?
Mark Tunnicliffe’s blog, ‘River Rat Diary’, can be found at http://marktunnicliffe.com/blog
Posted August 11, 2017 11:06
A Postcard from the Waiting Room - 5 July, 2017
Alone on the boat, held in light, I sit sunned, watching a parading sky. All roads led me here, it seems. And there is much time to wonder. Did I have a choice about where I came to be?
Life here has been renewed. First spring, then summer came to the estuary, the seasons in their arc casting swoons and swathes of green across the warm Suffolk countryside. The waters mellowed and the birds changed guard – sandpipers for swallows, African dust for cool, glutinous mud.. Where does winter go? I can't believe this is the same place that had me cowered in flint-hard January.
Because I rarely feel far from a hospital waiting room, I hover on the fringe of all this, unsure if I’m invited. I ache to run and swim and generally whoop it up, but instead remain somewhere at its edge, in spirit at least – a man with a lot on his mind, and a dialysis catheter under his shirt. It’s hard to forget. I do my best. Taking in great lung-fulls of life, I walk out each day and hoover up this place, exploring every sense – listening, smelling, touching the long grass, ineptly identifying trees (did you know there are over 300 species of willow? I can name two!), and saying hello to cows, like a five-year old, as I pass.
I wait for summer rain.
Medically, the rollercoaster continues. It’s been a surreal parallel track for my family since March, the ‘elsewhere’ in our lives; a long, vaguely linked procession of appointments and consultations, peppered with news bombshells, occasional (sometimes contradictory) feedback, spells of bloodletting and silence – for months the ride has been cranking up, stalling and jerking into life, by jolting turns. It’s been easy to fall into a battered gloom – as I did for most of May and June.
As potential donors, both my mum, Annie, and brother Paul finished their tests, having been bled, probed, held up to strong lights and generally assessed to the eyeballs. Then a few days ago, ending weeks of stressful double guessing, the Royal Free Hospital in Hampstead punted one scenario centre-stage, and laid one to rest. Paul, it transpires, has scored highest as a match, finally giving us a steer over whom, in the most intimate sense, should go to hospital with me. And mum, quelling her instincts to protect us both by donating, is to be spared an op, and left physically free to help us with our immediate recovery – a good 6 weeks to get past the hobbling and groaning, I imagine.
This won’t be easy for any of us, and I must say, I don’t feel very grown up about it. Our situation still seems crazy, and the whole thing (ideally) someone else’s business. Doesn't this story belong to a different (pluckier) person in the local paper? Discussing the operation, I find myself telling people sagely that ‘you need to break eggs to make an omelet’, while internally scanning for a way out.. Any way out at all, no matter how ignoble. Would swimming towards the sunset be acceptable?
We may be cooking that omelet in August.
Digesting the news about Paul, a stream of images went through my mind – a well-worn flicker book of memory and dream. We are kids, playing in the walled garden of the house in Maltraver’s Street, Arundel. It’s 1972, probably, and he’s crying. Why? Because I’ve just kicked him in the goolies. Now, we’re in the garden of Grove Cottages, Binstead. It’s 1978, and he’s crying – because I’ve done it again. What’s the matter with me? And what’s this? A food fight in Southfield Road, Oxford? I think it’s 1984. I’ve just poured a bag of self-raising flour over Paul’s head, and locked him in the larder. This is mutual rough-housing (I like to think), and they’re certainly not my only memories of our relationship – he was the constant companion of my childhood – but I’m sensing some sibling competition here; a certain amount of acting out. I should have known better, of course ( I was 20 in 1984). But it would take leaving home, and navigating a lot of difficult growing up (and falling apart, and reconfiguring, on my count) before I could fully appreciate my wise, funny and honourable little brother – or anyone else, for that matter.
Now, his sense of rightness is about to be made graphic. Though he’s younger than me, Paul’s act is in some ways tough to follow, and he’s about to do something I will never be able to fully thank him for. 'Sorry' got old long ago. I’ll try to express my feelings somehow.
I love you, Paul, as I did, incoherently, back then. These days I can put it better than hoofing you in the tackle.
I get a tough lesson in gratitude every time the hospital taxi picks me up. Good fortune is relative, after all. The journey to dialysis in Ipswich takes around half an hour, and I go three times a week for the four-hour evening session. Though thankful for the help, the late-night hanging around in deserted clinic waiting rooms – for up to an hour, post-treatment – makes me scream inside, and sometimes outside, and I have to work hard not to loathe every bush, dog, and half-timbered bungalow on the drive home.
But in a way, it’s my regular co-passengers that affect me most. Sharing my taxi are two other patients – Gary and Barry. Barry is in his late seventies, a retired builder, and he can barely walk. He also rarely speaks. As an older man, his life on dialysis will be brief. Gary is frail, younger, childishly sweet and softly spoken, and still works occasionally as a software programmer. His face is paper white and afflicted by a startling skin condition I can't identify (whatever it is, it isn't good), and he also has an appalling hole in his head, thanks to a tumour, now removed. Gary also has one good eye - the other a sightless marble of milk. Happy days! I’ve nicknamed him ‘Lucky’. No - actually I haven’t, but God knows, sharing this sharabang of laughs every other day I need a sense of humour. The first time I met Gary, I wanted to cry.
I opt for something else.
On the hazy, luminous Mid-Summer’s Eve just gone, awed and giddy like a recently released lifer, I cycled several miles up-river to the estuary village of Waldringfield, through long, leafy back-lane tunnels of Oak and Ash, past farmers fields and brackeny heath. The evening sun found the colour of egg yolk, and the smell of Cow Parsley, honey and grass hung heavy in the shade. It was a kind of heaven. And here I was. I was invited after all.
I savoured every last atom and smote, and consciously honoured my pact.
While I have a life, I will live it.
POSTSCRIPT - Operation scheduled for 23 August ......
Posted July 5, 2017 08:50
Eclipsed by recent events, Waterland – the world beyond my boat – faded for a time, like a photograph bleaching in the sun. The early weeks of dialysis left me drained. No irony.
Decanting, filtering, and uploading my blood every other day oddly reconfigured my senses, I found; delivering a strangely disembodied state, as if I’d been transported, imperfectly, in particle form. ‘Beam me up Scotty’, I order the bleeping machine, whenever I recall a sense of humour.
Curls of plastic tubing pump liquid ruby. The contents of my heart. Beautiful; terrible. The hours seemed endless; someone else’s.
I began to deal with basic life business with a new kind of will. Living through the post-dialysis prism, it was all I could do to place one foot in front of the other, head down, and set my jaw to the day. This is what people do, I discover, first sensing the possibility of fading into the past.
But how, in such circumstances, is one supposed to feel?
I can’t help thinking, rather better than Dave, the 80-year old NHS volunteer driver giving me lifts to hospital on Tuesdays and Thursdays – twitchily, too fast, and fuelled now by something other than humanitarian impulse. Confusion? Anger? A raving sense of injustice? “FACK!!! SHIT!!!, he shouted without warning during our maiden journey home, shattering our silence. “BLOODY PEOPLE!!! SODDING ROADWORKS!!! BLOODY HELL!!! I CAN’T STAND IT!!! WHY CAN’T THEY JUST BLOODY LEAVE THE ROADS ALONE?!! This possibly rhetorical question he accompanied with a few especially badly taken corners, while he raged, and I trembled with fatigue, freshly stitched dialysis line burning under my skin. I wondered why this crabby old lunatic thought he was doing anyone a favour. Days come we don’t recognise, and cannot prepare for, I mused, awestruck.
Don’t tell the children.
The remaining time, I use taxis hired by the hospital. These, I am grateful for, but somehow hate, making me sit, as they do, in blank, brightly lit waiting rooms late at night, in the ghostly company of frail renal comrades, for cabs sometimes taking an hour to come, and drivers who, despite best intentions, are prone to plumbing the depths of inappropriate medical conversation. (We grunt and nod, pondering life’s guileless capacity to serve such trials up.)
I’m very aware of being one of the lucky ones. At least for me there’s a chance of things improving. Many in dialysis don’t have a hope. Age and illness often rule out transplantation, and some, semi-conscious and wheeled in on beds, are clearly nearing the end. “Sometimes they die”, Monika, a Polish nurse, tells me matter of factly. “Well, that’s life”, she adds not unkindly as I cough a laugh. This fact sits in the air, like disinfectant. There’s a quiet camaraderie among the patients, a smile here, a wave there, a raised cuppa among the bleeping machines and bustling staff. We all know. And there it is. (At 52, reasonably intact, and still rather rakishly enjoying a pee, I’m sometimes referred to as ‘young man’. This makes me happy as I still erronously identify as such a creature, while aware I’ve become venerable enough to genuinely look forward to the comfy dialysis chairs, a bit of TV, the flow of tea and Bourbons, and chatting with the nurses – fairly clear evidence I’m becoming an old git.)
Fortunately, genuinely young patients are there to remind me who I am, and how far I’ve got. (Two lads in their early 20s began dialysis with me ). For us, it’s the strong possibility of being sprung from this place – one day – that really keeps us going. How do the others cope? Our potential donors and operations are talked of with hope, and some dread. Right now, we agree the prospect of ‘freedom’ feels as unreal as the dialysis, and the whole shitty, unfathomable, situation (The medical offer itself comes with no promises, and stark caveats).
So why, do at least two of us feel life, and the very business of being ‘here’ has fundamentally changed – for the better? Provisional presence understood, we’re finding food tastes better, fresh air smells sweeter, and the sun shines brighter.
How could such a hairy old cliché be so ringingly, dazzlingly true? Who would believe you – that darkness contains light? Is this one small step towards liberation during life, the precious ‘dying before you die’ that Buddhism speaks of?
So, something is in the air.
Life. With spring, comes possibility. The lid taken from the jar, we breathe. Colour returns to the picture – hedgerow birdsong, hawthorn blossom; fresh showers of willow.
Sap and blood rise.
Strength and stamina is returning to my body, focus of mind, too – a corner has been turned, just – and I’m beginning to feel something like my old self. Thank you curling ruby. Meditation keeps a horizon in view, and ‘me’ somewhere near a level. Sometimes it takes stumbling without maps for a time to find True North, a discovery we need to make over and over again.
My meetings at the Royal Free Hospital in Hampstead were friendly and efficient. Dr Jones, my new consultant, has bright searching eyes and eager, boyish glow. He laughs freely, and readily – a rare trait in a senior medic. And my surgeon, somewhat reassuringly, emitted soothing, almost preternatural calm – a Horse Whisperer for people. (Trembling hands and whiskey breath he left to the nurses).
I no longer think much about the operation, or its aftermath. Emotions are cooler and the facts have settled into visibility. Part of my body packed up. I ran out of rope. And a lot of hardworking people are offering fresh line – a transplant, if I’m lucky, could last me 10-20 years. With a miracle, more. And they can do it again.
So what if I hang around for a taxi.
Posted April 17, 2017 08:14
Wind-blown – and winded – I’m taking stock: broken trees, battered boat, one lost mooring line (now repaired), and knackered kidneys. The latest storm and its week-long wake matched the contents of my wooly-hatted head, as if to drive home a point:
Shit happens; sometimes you won't know which way is up. Deal with it.
I’m used to the river’s changeable, and ocassionally nasty moods, and felt little resentment about them until late one morning last week when, sitting in cloud-bound half-light, I tried to have a phone conversation with a kidney counselor in Norwich, as Odin rolled, bumped and crumped in the harbour, utterly at the mercy of billions of gallons of freezing, gale-whipped tide water.
“Sorry, can you say that again?” [CRASH] ” I asked at one point, the sound of Odin’s gangplank parting company with the deck, drowning the counselor out. “I’d like to live on the boat as long as my health allows”, I hear myself add, [CRACK] “... and come back after the operation ... when I’m strong enough.” [CRUNCH-CLATTER]. A pause while I watch the kitchen light swing from the ceiling, fat waves noisily slapping against the hull.
The plans we make, I think to myself. Next to stories, aren’t they all we have?
Nephrology, Fact Fans, is the science and therapeutic treatment of the renal glands (kidneys), and nephrologists are the medical experts of all things renal – while senior nephrology consultants are the frost-touched, blank-eyed overlords who preside at hospital clinics, talking (briefly) to the tops of patients’ heads (and sometimes bridge of the nose), while dreaming up ever-snappier titles for their latest publications on nasty wee-wee disorders.
Harsh? Meet one (It has unfortunately been my experience so far).
My current consultant in Suffolk (let’s call him Dr. Elsewhere) suggested I have a kidney transplant with all the empathy and warmth of a jaded, seen-it-all-before garage mechanic condemning a clapped-out gearbox – my gearbox to be precise, in my super-trusty, been-everywhere, super-precious, much-loved vehicle – the one that’s taken me everywhere, day-in and day-out (including on many of my best holidays), even giving me a place to hang out in the evenings. Since forever. I love this car. And he must know it. “Or scrap it, if you like ... and I’ll give you a tenner to take it off your hands,” I expected him to add.
The only thing missing was an oily Linda Lucardi calendar and an ashtray full of dog-ends.
As the room moved, and life’s blood drained into my Dr.Martins (now that was a doctor!), I sputtered a couple of feeble questions, and left.
The next two or three weeks were horrible. I was beside myself with rage and worry. I went to a ‘renal education day’ at the hospital, and immediately felt worse. I scanned the room – everyone was old; everybody else was a goner, practically, and a candidate for morbid pity. I was there ‘by mistake’. Wasn’t I? Then I saw my ageing, dog-tired face in the mirror. Nothing really prepares us for the loss of our safety, (or ignorance).
So, though I was being offered a lifeline, I regarded a transplant with horror and disgust. It was an affront somehow to who I’d been, who I thought I was, and who I wanted to be. A transplant felt like execution of established self; and a visceral end to physical integrity – and to cap it all, my family wouldn't merely have to watch proceedings: as donors, they’d need to take part. (Hadn’t I put them through enough over the years?)
I wondered if it could possibly be worth it.
Fuck it – I was so disappointed. My balloon had burst. The river dream was surely over – I could no longer pretend the blood-tests were anything other than a countdown to .... to what? Certainly to something ''bad' (and hard to imagine). And life on the boat suddenly seemed absurd, my happy isolation threatening. (The hand-to-mouth money situation was hopelessly dependent, too; and shameful and impossible. What had I been thinking?)
Where would I go from here – wherever 'here' was?
For better or worse, nothing lasts. Storms pass. Internal weather breaks, and moves on. And in this, for me, there have been many helping hands.
Friends have called, staying on the floor, bringing firewood and their company. They've listened and advised, braving patiently, and compassionately, my ranting and incredulity.
Family, likewise. As potential donors, my mum, dad and brother have enjoyed the added frisson of elective surgery and giving up a shiney vital organ, though which (if any of them) will have to follow through, is not yet clear. For now, uncertainly has a new keenness for us; a sharpened edge, in our lives.
People I know less well have been significant too. Barney – a veteran of two transplants I met through a tissue-matching scientist friend of ours in Oxford (who knew I’d be sampling his wares one day!) – has given wise, funny and satisfyingly pithy advice on all things kidney-related, including the ins and outs of using other people’s. He is well, and lives his life fully. His example alone is almost enough. I have no intention of becoming a professional sickie.
Barney and I bonded, incidentally, finding out we shared the same senior renal consultant at the Churchill Hospital in Oxford. (We’ll call him Dr. Stone). This is a man of very few words who can hardly bare a conversation with his patients, and whose irritation during consultations manifests itself in a rapidly vibrating leg, which becomes a veritable blur if you question any aspect of treatment.
My feelings about Dr. Stone are complicated. Because, despite his apparent view of me as a walking (and unfortunately talking) case study (‘Hmmmm, vasculitis – quite rare!’), he did me no small favour two years ago, and directed the team that saved my life. (Stereotypes - hmmmm, quite common!)
Postscript: I’ve had to start dialysis, at Ipswich Hospital. I wanted to make it to transplant without this, obviously, but my kidneys had their own ideas. Offal. You can't trust it! Life goes on, but for a while it will revolve around three half-day sessions a week sitting in a very brightly lit room, in a padded chair, drinking tea, eating biscuits and watching my vital juices pump round the innards of a very expensive, bleeping one armed bandit..
I may take a book ....
Posted March 19, 2017 13:43
I just realised the post below - 'The Edge is Everything', for people who've not heard from me for a while - may come as a bit of a shock. Don't worry. I'm doing ok in the circumstances! The latest health news has not come out of the blue, and there's reason to be hopeful for a good outcome to an eventual op (which is surprisingly common now, believe it or not). I'm getting my head around it and it's the best way forward for me. I've no plans to leave the boat, though a period of recovery from any op would need to happen elsewhere. I'll keep you all posted. Mark x
Posted February 9, 2017 15:39