In retrospect, I was perhaps foolish to bluster into the normal ward thinking I was strong like Ox. Rarely do things go as planned for me.
Nevertheless, for a man dripping with tubes and unable to stand for more than 5 seconds without crumpling into a heap I was filled with a strange serenity and new-found confidence. The next few days were really a drowsy blur. The NG tube was pretty big and a real struggle. As I would drift off to sleep it would settle against the back of my throat, setting off a gag reflex, and I’d jolt awake like a grandfather at Christmas, woken by his own Brussel Sprout enhanced guff. It left my throat and nose raw and dry and I slept fitfully now and then.
The dryness haunted my dreams. I started obsessing over giant cups of lemonade (the sort you got in cinemas and fast food restaurants) filled with ice, in my dreams I would chug them in one go. Or I would be lying somewhere tropical, cradling a pitcher full of fruit juice and ice. All too often I’d be jolted awake to reality by the scratch of the tube, my tropical paradise replaced by beige walls, tubes, and the bleep of monitoring equipment.
When the surgery looms on the horizon you try to prepare yourself, but as with most events reality is always different from the preparation. Time becomes elastic. You regress into your own head and try to while away the hours in the theatre of your mind. I would picture the gross insult done to my body inside and out, try to view it dispassionately with a clinical perspective. When that didn’t work I’d imagine the incredible repair project taking place in me. Organs swelling. Skin cells knitting together. My body shrinking, refilling the spaces my unwelcome visitor left behind. Kerry was there as much as she could be but talking was incredibly hard and I was 100 miles from home. I foolishly thought I’d done the hard bit but the psychological battle continued furiously.
It’s very hard to avoid prison analogies so I’m not going to try. Propped up in bed, sore and bored, and without meal times to break up the day (remember, I had smelly thick milk feeding me through my veins at the moment) I had to measure the day in other milestones. So I had various boring daily markers to delineate the passing of time.
Every hour or two I’d get the strange nauseating feeling in my stomach that said it was full of brackish gut water, and feebly flag down a passing nurse. They’d hook the syringe up to my nose tube and I’d go crossed eyed (much like a cartoon bear watching a bee land on it’s nose) observing it slowly fill the container and splosh into a jug. The record for slime emptied out of my tummy was 2 litres in one go. It was a magic porridge pot of bile.
Then there was my wound that had to be dressed daily by a squadron of nurses. I’d lose a few more body hairs each time and gaze in astonishment at the dressings and pads and gauze torn from my tummy, shiny with half formed scabs and mucus. As time wore on, I’d get various oohs and aahs from my audience of nurses, one of whom, Elaine, took great delight in jabbing my belly, Pilsbury Dough Boy style, as she watched it shrink. In less than a year I lost 7 stone, a third of my body weight. I’m amazed more people don’t take up Cancer as a weight loss regime.
Then there was my exercise and daily ablutions. The half dozen steps to the chair in my room were a marathon in the early days. I’d haul myself up, nurses either side, ready to catch me, sway a bit and slowly regain balance. Wires dangled from me and most of my arse flapped in the breeze. Balls to modesty, they pulled a big bastard tumour out of me last week, I’ve earned this partial nudity! You give up sense of personal space fairly quickly, during bed washes you simply lay back and stare at the ceiling as you’re scrubbed down, if someone has a name badge and seems to know what they’re doing, they can do what they like! Anyway, I’d shuffle and hobble and stagger to the seat and aim for 15 minutes of sitting upright. After 3-4 minutes I’d start getting short of breath. Shortly thereafter I’d feel as if I were underwater with a great weight bearing down on me. As 15 minutes approached I’d be panting and sweating and leaning precariously. Then I’d have to make the slog back to the bed. It sounds absurd but the strain was immense.
Lastly, but certainly not least, was my stoma and the bag changes. I’m going to talk lots about poo and the digestive system in the next three paragraphs so skip them if this bothers you. You big girl’s blouse. My stoma has filled my world and frustratingly ruled it too so I need to talk about it a great deal. It is necessary to save my life and allow my recovery but it frustrates me all the same. Because it’ll get lots of mentions I’m going to do a bit of medical detail for you. A stoma is an opening. In my case, I have an opening quite high up in my digestive system, which means I have an Ileostomy. If the opening was lower down I’d have a colostomy. Imagine your digestive system is a drainpipe. The top half takes the nutrients out of the food, the bottom half takes the water. The second quarter of my drain had been strangled to death by the tumour and was infected, and had to be removed. The second half was sealed up and left intact. With nothing to do it sat there, redundant. My bum was now out of use. For now, there would be no poo or farts. Yes, it is weird for a bit, but you get used to it.
But the stuff that goes in (food) has to come out somewhere too. So the remaining part of the small bowel gets stretched through the abdomen to stick out somewhere on your tummy. Where it comes out depends on how much healthy bowel you have left and how far the veins and arteries that keep it working will stretch. In my case, I didn’t have a great deal of give. So pretty much where my appendix would have been (just above and across from where my belly button would be, on my right side) is a red oval, like someone has scooped a chunk out of me. Inside that hole lives the bottom part of my small bowel, it looks like a little thumb made of the same material as the inside of your mouth. At random times of the day (or in my case, almost all the time) it will bob in and out like a little turtle peeking out of it’s shell, and spew some poo. Because the next bit of the bowel would normally take out the liquid, the poo is very watery. To catch this, you stick a bag over the hole and the said turtle head poos into the stoma bag. You open the bottom of the bag into the toilet to empty it, clean the outlet and get on your merry way.
Sadly, my stoma was more challenging. By the time week one was over I knew this to be true from not just the pain, but the way nurses winced when changing my bag and commented on how indented it was. Most Ostomates have a few cm of bowel sticking out, the bag covers it and faeces drops happily into the bag. Not so with me. The placement of the hole meant gravity battled my bag as it clung to the curve of my tummy. The length of my bowel meant poo would pool in the opening (partly because I was bed ridden, so gravity couldn’t help), and the bowel separation being so high up meant my poo was particularly watery just to add to the misery. This was a perfect storm that meant for the first 6 weeks or so I was in hell. The pooling of waste and associated stomach acid meant I had an area the size of a saucer on my stomach that was perpetually being burnt with acid. The sensation was of a cigarette being put out on my skin constantly. The constant stream of liquid poo meant the bag struggled to stick and I’d frequently have to endure the humiliation of liquid shit streaming out the sides, flooding my bed as I lay helpless in my own crap. I was a baby again and the nurses were lovely but nothing ground me down more emotionally and physically than the constant battle I had with this endless stream of excoriating, stinking waste. It’s driven me to pain and tears dozens of times and twice the pain has pushed me to the verge of vomiting. If I know you and suddenly disappear or go quiet online out of the blue, most of the time it’s because I’m having a stoma problem, I apologise both retrospectively and in advance. Stoma catalogues are filled with images of couples laughing in restaurants and strolling along the beach, hand in hand. I want to smash their faces in with a shit smeared fist. You get the idea. I’ll scream incoherently about my stoma further in later chapters so it’s time to move on.
I figured I should feel better, not worse, as the week closed out but that was not the case. I started getting more and more achey and breathless until on the Saturday I projectile vomited a significant amount of bile, hosing myself and clipping a nurse too. As I sorrowfully mopped warm swamp water off myself my surgeon dropped by. I semi-burbled a few expletives at him through the scratchy NG tube and the slop dribbling from my nose and mouth. He dashed off looking appalled and to presumably fetch a priest to sort matters out.
I laid there feeling ropey and sorry for myself when Kerry unexpectedly turned up. Any sensible human being would be delighted at their wife making an unannounced 4 hour round trip but no, not I, I behaved like a right shit and starting moaning/sulking. I think my logic was that I’d have seen her the next evening anyway and I was worried about her getting burned out and Ethan not seeing enough of her, but the way I expressed that was to act like a massive bell-end. She may have regretted some of her wedding vows that day as I lay there gurgling and scowling.
Next up to get the pleasure of my charming company were my Mum and oldest brother. Shortly before their visit I did one of my marathon treks to…errrr….the chair next to my bed and very nearly passed out onto the tiny physio who was helping me. She managed to juggle my various bags of bodily waste (picture a shopper laden with bags full of clothes hunting for their keys with half a free hand. But instead the bags are full of wee and blood and mank and the keys are a half witted gentleman swaying, his pallid arse rearing up into view) and corral me back into bed and stick me on an oxygen mask. At which point my family arrive. I’m beyond speech so invent a new sign language called, I believe, ‘bullshit’ and get increasingly aggressive as they struggle to interpret my ridiculous hand gestures.
Unsurprisingly, they leave before long, and I try to sleep.
The following day I’m suddenly awoken in the early hours. Turns out some of the samples they took before (if it can fit in a tube, thy wanted a bit of it. Four times a day. Hadn’t you had enough blood, you monsters?!!!?) came back with signs of serious infection. Which was maybe why I kept trying to kiss the ground and why my heart rate was way over 100. They were concerned, and with that, at 6am, it was back to Critical Care I went…
Coming Soon: Chapter 20 – Hallucinations and Detonations.
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