Fitting the fistula

Autumns wispy misty fingers calmly spiraled into those country lanes, leaves turned that last gasp green, fraying and splitting at the edges,dropping, drooping, the colours seeping, seeds and fruits hanging from those branches. There are berries, ripe, black and juicy, in the hedgerows, ripe rose hips and helicopters,winged seeds that will whirl and float through the air, dancing majestically through the sunbeams which filter through the leaves, through that mist. Like dancers in a smoky nightclub, the seeds gyrate, boogie down to the ground.

Up early, my wife drives us through the darkness to the station, I’ll catch the busy train. Kiss good bye, wish good luck. Into the hall, buy the ticket, down the subway, up the steps. The trains pulling in as I exit the subway, climbing up the steps. Platform full of people, doors, open, passengers get on and off.

I climb on into that sleepy carriage. Sit, close my eyes. People sit, listening to music, eyes closed.

The train pulls out, and in 20 minutes we arrive in Angers. Off the train. I stupidly struggle up the stairs outside, looking through the window at the escalator inside the station. That’s when the 80% handicap really hits home, at the top of those stairs. The sun is slowly peeking through, but its twilight, if that’s the right term for this morning gloom. I walk towards my job, the sprinklers are watering the grass which surrounds the pathways and the tramway lines. It’s a warm morning. I walk towards the classrooms, up three flights of stairs, as the lift isn’t working, and when I get there I realise I’ve left the timetables and class lists in the staff room. Back down the stairs, into the staff room. I grab the paperwork, head to the bathroom, clean up  and then climb the mountain of stairs back to the class. I plug in my computer, take the register and explain the course outlines and tasks to the students. They need to do an oral presentation, a written test, a listening test, a conversation class and a final control.We decide when these things will take place, each student is allotted a day to do their oral. They must look at 3 adverts in English. Then we do some grammar, the past perfect. I show a power point, try to explain and then encourage the students to try to use it. I take down emails and send them internet links to practice plus the notes for today. They won’t look at them! They wander out after 2 hours, and the next group comes in, and as its the beginning of term, I run through those same things. I decide to look at the past perfect continuous with the second group, perhaps that’s easier. They try to use it, and I send emails with links again. They go.

I pack up, turn off the equipment and head out the door. Jelly legs, potter down those bare stairs, my wife’s waiting for me outside the university. I climb in we kiss, and head off to the clinic. We chat about our respective days. Days of glory, days of shame. We arrive at the clinic, but its the wrong door, so we follow a yellow line, like Dorothy and the scarecrow (I’m the scarecrow with no brain, my wife is Dorothy!). Dragging the wheely case after us. We get to the right door and I realise I’ve left some paperwork in my case in the car. My long suffering wife slowly plods back to get them, and I fill in the forms and book into the clinic.

We go to the room fairly quickly, I change into the sexy paper underwear and gown, the nurse comes to take my temperature and blood pressure, and after, I finish changing. We joke and my wife says she’ll never get the image of the paper pants out of her burning eyes! I drink a bitter clear liquid, to calm me.

My wife has to go back to work, and we hug and kiss. Ten minutes later I’m moved to another cart, wheeled off to theatre. A drip line is put into one arm, and the bitter tasting drug I drank before works its magic. A big light, a mask, my arm is cold suddenly, and then its off to sleepy land. I come round, they give me drugs for pain and nausea, and wheel me to my room. I call my wife, and they call a taxi, I eat breakfast (at 6PM!) and then I go home with the taxi.

My wife’s had to wait for the phone call 4 times in the last few months.She’s tired, worried, but happy to see me. Tomorrow is our little boy’s birthday. Think about that!


Waiting room

Hushed and quiet, forms to fill in.People sit and look at the wall, the floor or through you.

They come and their names are called,they go, to see the anesthetist

People come.A couple with a young girl

He is angry or upset, frustrated or worried.His brow furrowed like the earth on an autumnal day.

His wife sits with their daughter on her lap, hoping, wishing.Worried.

Another man, heart tattoo on his sleeve, reads the pamphlet and thinks of death.His neck is red from the sun or from smoking or drinking too much. Or just stress.

Another woman, wheeling herself in on her walker.She’s lost and needs the toilet. “Its under the stairs” She wheels herself off to that destination, hoping her turn won’t be taken by another patient.

More people come and go, time drags on and the afternoon heat becomes stifling. The clock seems to move backwards, on the wall are posters with health messages and information, as well as the “no smoking” , “no mobile phones” and “no praying” messages.I made that last one up!

An elderly couple arrive, hunched and ragged.

She has silver shoes,white beret and a striped top. Quite jazzy!

She’s dressed for the 60’s though she’s over 80. I imagine her, dancing those nights away.

Her arms wrinkled, baggy and spotted with age, nails yellowing and teeth turned brown.

The skin on her throat and chest looks like scales on a crocodile.

Her husband sits, tired. He’s bald and hot, worried perhaps.Alive, together. How long now till we see the doctor? How long now till we see the undertaker? How long till the next glaciation?

Then a couple come in , close, holding hands. They sit, huddled or cuddled in the corner. Feet entwined as they read those magazines.

Another elderly man with a cane comes in. He sits and shakes his head.The door opens, closes. Ill people come and go

Here, people say “Hello everyone” as they enter and “Goodbye ” or “Good evening” when they leave, but in between there is silence, like in a toilet or elevator or even in church.

People try to whisper, but age defies their hearing and they speak, but softly. We pretend we can’t hear.Those mumbled words.

People pick up those dog eared magazines from 1970, with the crosswords already done.They put them down, having wiped their bogies, and leave them, drying in the sunlight that drifts in through the closed windows, frying slowly in the baking summer heat. The pages curling, yellowing, decaying.In the shafts of sunlight the dust dances, trying to remind us of our destiny.

Where these people will go after I don’t know, and what illness they have is a mystery to me. We are all seeing the anesthetist, which means all of us will have surgery of some sort.

Finally the door opens and the Dr calls my name. But as usual he can’t pronounce it correctly so I stand and check the folder and tell him that it’s me. He’s fed up, as he’s seen many patients , working on the production line. He’s lost sight of our humanity, and perhaps even his. He has no joy in his job, and wants to go home.

People have become a blur for him as his office is cramped and hot, and he has a waiting room full of people , some without appointments as illness isn’t something that we plan. He moans about the computer, about his secretary who hasn’t kept the files up to date, about me.

I tell him ‘We are all human” and he replies, in an Orwellian way, that “Some of us are more human than others”. All animals are equal, but some are more equal than others.I blink, tell him “Perhaps they need training or time”, and he just reads the folder and ushers me out.

Before I saw the anesthetist, I saw the surgeon for the vein operation. He was full of joy, passion, knowledge and put me at ease, relaxed yet professional. His office is clean, airy, cool and relaxed. He has time to chat, to joke, and even to telephone the dialysis centre and check out the scenarios.The contrast between the two is remarkable, the conditions of work very different.

The anesthetist hasn’t eaten, and orders a sandwich from the secretary, he doesn’t care what flavour. “I eat to live, take no pleasure”. A rare attitude in France, where food is culture.

Quick fire questions and bundle me out of the office. Pressure means that barely have I sat down, the questions are spurted, no breaking the ice here. He has by folder and as its the 4th surgery in 3 months, he’s sick of the sight of me.

He’s just going through the procedure, there is no real need to be here, other than the legal point of view. He knows the medicines I take, my blood group, weight, age, sex, height, allergies and what operations I’ve had.

He ticks his form and opens the door, waves me out, walks to the waiting room and opens the door, calls a name. Someone else looks up, relieved the wait is over, or scared at what will happen next. I follow , like the ugly duckling follows mummy duck. Waddling to the secretary’s desk. “Quack quack quack” in my head. Another one bites the dust.

They walk past me as I hand over my health card to his secretary, along with the consent forms and the information forms. I’m apparently invisible now. Behind me are more people, waiting to go into the waiting room, and in the waiting room are many people. A couple wait with their young daughter.The girl is blonde and beautiful, but she’s grunting and crying as she is mentally disabled. Her parents smile, tiredness in their eyes, their faces worn thin with the judgments of others. Waiting to go into the waiting room, where they will wait to see the anesthetist, who doesn’t want to see them as he’s fed up. He’ll be there for hours yet, ticking forms and asking questions.They’ll be there for hours, waiting to see him.

I gather my things and wander off to the car.

I go home, and they will to. Waiting for the operation.

Checking the peritoneal catheter

Because the catheter started to leak I had to go back to hospital for another operation to check the catheter; This time just key hole surgery.

I went to the dialysis centre first, and did my dialysis on the Monday morning, then after, walked to the hospital and was admitted after a nice lunch. They put me in a room with an elderly gentleman who had sleep apnea problems, his machine made noises akin to a dying vacuum cleaner. I slowly got ready, shaved, had a Betadine scrub shower and put on my pyjamas. I had a supper of pasta and chicken, nothing exceptional; The sleep;
The night was long. The poor gentleman’s machine honked and clonked , and I was stressed about the operation.

The next day, no food or water until after the operation. In fact, that took place at 4pm. So they wheeled me off, after I’d had a Betadine shower and put on the gown. The gowns have clips on the back, and the two nurses came to check the shaving was ok and helped me clip up the gown. Now I know you’re all thinking that two nurses came and checked out the family jewels, but no, they just checked the pubic area and didn’t get to see those family jewels. How often does one get asked that kind of thing! “Can we check your pubic area please! My long suffering wife did get to look at that zone, and (ad lib here) said it was “like the Christmas turkey” and that she’d “stuff two balls of stuffing up my derrier and put a sprig of holly on it”. Ouch! I’d laugh, only it hurts too much.

So they wheeled me in, did the keyhole. I remember telling the surgeon the time before drifting off in the drug induced stupor. I woke up, gagging on the tube, and they took it out. My throat was like a cat’s litter tray, smelly and dry. Then the pain. If you’ve read Stephan King’s book, Misery, he describes pain very well in there, waves, coming in over, but I hadn’t had my legs shattered. The pain was worst in my shoulders, which sounds strange, as the operation had been on my belly, but the doctor said the two are linked, and they pumped me full of gas( which delightfully escapes over the next week in full Dolby sound ) and the pressure of that gas hurts the diaphragm which hurts the shoulders and then you start to sing ‘Now hear the word of the Lord’ After, I slept, fretfully, with the vacuum cleaner noise from the next bed, waking up to vomit some green bile, which felt like a fishing hook was stick to my stomach and a fisherman was pulling me in, reeling in the biggest whopper ever.

My wife and little boy popped and we smiled and held hands. My little boy was amazed with his latest toy, a camping car from Playmobile. They smiled, and I drifted into sleep.

So it was I beached on the island of pain.The morning came, and I woke. Waddled off to the shower. Reminded the nurse for the third time about the taxi to take me to dialysis that morning at 9.
Like the Beatles song, “Day in the life” ‘Woke up, got out of bed, dragged a comb across my head, made my way to the desk and drank a cup, and looking up I noticed the taxi was late’
So it was I walked out of the room, with all the stuff i had walked in with. Case, books, computer. I struggled to the desk, and explained about the taxi. If I wasn’t at the dialysis at the right time, they may not take me, and I’d be ill. Where was the taxi? Well they looked a bit sheepish and hurried conversations started in corridors , like a wild fire starting in the bush or a page burning in a book, slow at first then out of control. I picked up my stuff and walked to the dialysis, it would take ten minutes. The taxi guy got me half way to the centre. I just shrugged my burning shoulders. If they cant organise a taxi, then it leaves little confidence in the operation.

At the centre, They looked at me and wagged their fingers. I shouldn’t be walking anywhere. I should have waited for the taxi. I retorted.They should have booked the taxi when I asked. Phone calls were made and opinions exchanged.

Then, after the dialysis, they wheeled me back to hospital. X ray and IRM scan. Let’s check what they’ve done and that the pain is just because of gas.
My wife is worried; I try to reassure her on the phone. The taxi man who was with me at the hospital was supposed to wait for me, but he’s gone to do another fare with all my stuff except my phone and he’s left me. I finish the tests and then wait. Apparently he’s coming back. He’s not coming back, and I phone my wife. Book a new taxi with the same firm as they have my stuff in their office. Another taxi comes, with my stuff and an hour later I get home. Not the best day for taxis.

Armed with all my prescriptions, my wife went to the pharmacy. What a star!
I’ll go back to the dialysis on Friday, and then Monday, and Wednesday next week. Slowly getting better. Slowly appreciating the fact I get treatment.

Fitting the Jugular catheter

The peritoneal catheter wouldn’t heal in time, it kept leaking. So with a creatinine level over 500 there weren’t many options. I had to either die, or have another catheter fitted to have blood dialysis. The doctors discussed it in the room, organised it all, handed me the A4 size catheter in its sterile box, and off we go. My wife organises the cases, and checks the train times; I won’t be able to drive after, so taking the car is a no-no. Tom and I catch the train, its the school holidays. He’s excited, looking out the window. He loves trains. He knows I have to go to hospital, but he’s happy, untouched, I hope, by this. We go past windmills, smock mills, castles , the Loire, and into Angers.
The train pulls in, and my wife arrives to pick us up from her work. She drops me off in the clinic, we sit, hold hands, and hope. I go off to see the anesthetist, she hold my hand, then kisses me goodbye. She goes back home with Tom. I get ready in my room. A nurse comes, Betadine scrub and shave. All the carers are super. Sleep.
Thursday morning comes, 09:45, we go to theatre. They give me an awful tasting drug , bitter and salty. It’s a calming thing. Then, they wheel me into the waiting part, insert a drip. Then into the theatre, big, cold, with a big lamp. I don’t know why, but I cant remember anything until 11.00, when I slowly wake up.
There’s a nurse, she’s young, hair tied up, under her paper hat. Her glasses are strange, one side is a different colour to the other, made from clip-on sides, so popular in France. I’m indiscreet and try to make conversation, asking her how long she’s been a nurse, and if she has a family. She gives me a black look! Oh dear! My usual tact! Later, she comes back, and I apologise for my indiscretions and explain I was just trying to make conversation and that its none of my business. She hears me out, she asks about my family, and I tell her about Tom, and Caroline. It seems better. When I asked her about her family, there was a sadness and pain in her eyes. Sometimes we forget the human act, reaching too far.
Later, she helps the ambulance guys wheel me out. They get stuck in the sliding glass doors, and she laughs.
I go off to dialysis. In the ambulance, I’m looking out the back door, so the road seems unknown and strange, however I know the road off by heart, but I’ve never seen it backwards.
I get to the dialysis centre. They wheel me in and eventually, they connect me to the machine. The nurse is really experienced, takes everything in hand. It’s pretty weird seeing your own blood disappear into a machine, so I try not to look. The doctor comes.The room is full of patients on dialysis, all much older than me.
I’m cold, and ask for a blanket. I’m doing OK. Then, a big wave of nausea hits me. I try to find the alarm button, and then just shout . They come, and I’m sick into a paper kidney dish. I explain I couldn’t find the alarm button. The nurse points, its under my hand; I cry a bit, failing even the simplest of tasks. Is it the drugs wearing off? I vomit, and they stop the treatment. Back home. Sore, and tired, dazed. My wife picks me up and we go off. She’s been worried all day. We go back. My sister and brother in law come with their children, they’ve kindly looked after Tom for the night.
I go to lie down.its been a long day.
Try again on Saturday.

Learning dialysis

Today I spent the morning learning to use the peritoneal dialysis technique, which involves masks, soap, alcohol soap, clean tables,and weighing the volume of liquid that goes in and out, waiting, checking blood pressure and weight, emptying the liquid and checking how much, filling up again, and then waiting more before finally emptying again.
The nurses are very kind and patient, as are the other patients who swap stories and add encouragement. I don’t feel so alone anymore.

Its not painful and I think I getting the hang of it all. Tomorrow I’ll learn the cycler and the automatic method.

The stitches are out now and my scar is healing, and I can change the dressing myself.

I’m a bit tired, so I’ll leave it there.

2nd June. Insertion of the catheter.

I got to the hospital for ten to seven, a bit before maybe. My wife squeezed my hand, the lines in her face from worry bleached out by sadness. We walked to the big , domed building, the hospital is old and the shell is from 1840. We get to the correct department, follow the orange flashes on the floor. Like Dorothy, following the yellow brick road to Oz.

The nurse tells us the room number. Room 101. I think of Winston Smith immediately, and the rats tied to his face. I’ll tell them anything they want to know!

We sit, hold hands, waiting.Time ticks on, we joke, try to make light of the situation. The nurse tells us we are first up, and at 8.00 I kiss my wife goodbye and she bravely goes to work. I’ve already undressed and yes, my arse is already hanging out of the gown. There goes my dignity. Off they take me, through a maze of corridors. Finally I’m in a huge waiting space. The kind nurses take my temperature and blood pressure, and put a drip line in.Then at 8:30 they wheel me into a huge operating block. There is a big lamp hanging from the ceiling, silver and white. It’s really cold! They put a fan which blows hot air under the bed covers next to me. We wait for the anesthetist. She comes, and at 8:38 I get some gas. A cold liquid is injected into my arm. I feel dizzy. Then suddenly I feel very confused, and try to resist. I remember my legs flexing, and trying to resist!

I wake up, its 1130.It takes until 12 until I’m coherent. I tell the nurse she has beautiful earrings. It’s because they gave me 3 grams of morphine for the pain. I get wheeled back to room 101 and phone my wife. She’s been rather worried, but she’s happy to hear my voice, and I to hear hers.

Time ticks by; I count the squares on the floor, on the ceiling, drift in and out of consciousness, feel the pain stab and go.

My wife comes to pick me up. The doctor visits and tells me to take it easy. We get all the paperwork we’ll need, and then  my wife helps me into a wheelchair and lugs me to the car. In the car I vomit. Its Niagara Falls vomit, caused by the morphine.

Then we go home. I phone my mum and dad, give our little boy a cuddle and go to bed. He’s made a picture for me, daddy attached to the machine.

Today I’ve done nothing. Just shared the room with my “friend” the fly, who zooms into my hair.Buzzes and annoys me. I need a wash, and to brush my teeth!. But I’m slowly getting better, and I’m lucky to have had the operation, and to have such super friends and family, and such a wonderful, beautiful wife.

The wound will heal, and the 13th the will check the plaster. Lets hope its lucky 13!

Fatigue comes and goes, as does the pain. My shoulders are stiff and sore, and my intestines are having a musical party.

Ah well, tomorrow is another day.