The long, long road to skipping got back on track with my transfer back to the normal ward, however. One of the first things to happen was a good long chat with my surgeon (you know, the dapper one – I think he was wearing otter hide briefs and a kerchief, I’m not sure) where he broke down the state of play. Considering the parlous state of affairs I was in before surgery the news was good. So let’s break it down, as I’m asked this a lot and it’s pretty important. Things have moved on a little since then but we will get to that as the blog continues.
– All physical signs of disease were removed.
– it hadn’t metastasised to other organs (lung, brain, etc)
– Biopsies of the little shit showed it hadn’t spread to my lymph nodes. Officially A. Very. Good. Thing.
– Because I’d responded to Chemo and had successful surgery he didn’t think I needed any additional treatment.
Importantly, this disease will always lurk and could return at any time. That could be a month, a year, a decade from now, but the spectre was there.
Ultimately, taking into account that I had taken a long ride up the legendary waterway made of poo, and forgotten both map and paddle, I had a great deal to be grateful for. Time to work on recovery. First things first – time to start losing all the tubes and bags. My tummy looked much more red and painful than it really was and I could feel the staples tugging on my skin so off they came. 100s of years of advancements in medical apparatus had got us to the point where we were now able to remove them quickly and delicately with, er, tweezers. Time to pluck those rusty old things out over 45 very peculiar feeling minutes. Lovely. But the itching had vastly improved as a result.
Next up were the drains. Again, the wonders of science astounded me – they were removed with a good strong tug, basically. Nothing was draining into them other than a few drops a red mucusy water so we decided to get me trailing a few less cables. To remove – lay flat, deep breath, nurse yanks. The sensation is one straight out of horror, and kind of interesting and funky in a grim way – for a few seconds it feels like a live worm is working its way across your abdomen but under your skin. With that, you’re not quite sure what’s happened and the nurse proudly holds aloft a slightly bloody tube. Tick that box off. Big puffy boots come off, exposing manky, sweaty feet. Tick that box off. The only real temporary annoyance left was the central line which they had moved to my neck to keep the veins strong. Dangling from just beneath my right jawline was a jumble of coloured ports and tubes, reminiscent of an African tribal necklace, and bound in oodles of medical tape which prevented much head movement. The unfortunate by-product of this positioning (thanks a bunch, stupid veins) was that I struggled to turn to my left. The door to my room was on my left. Therefore, every visitor had to suffer me groaning, bug-eyed with a rictus grin to mask the pain as I slowly tried to work out who had come in, because the only way I could see was in the form of some grim parody of Whatever Happened to Baby Jane? The day of removal was therefore subject to great circumstance, and I celebrated by slurping my first ‘solid’ food in three weeks – a bowl of tepid custard.
With that, a routine was settled into. Get woken at 6am with medication, breakfast at 7am of toast and honey and a pot of tea. Occasionally throw tea over self, swear a bit. Watch BBC Breakfast even though it essentially loops every 30 minutes. Haul frame onto chair while bed is changed. Haul frame back into bed. Get nagged to use the bathroom. Shuffle to bathroom and slowly wash, shave, brush teeth. Having a shower was hard as I had to perch precariously on a stool and try not to ruin all my dressings. It was also a struggle as it meant I had to catch sight of the full damage done to me in the bathroom mirror. It was nice to see myself stooped over, wrapped in dressings, elastic straps and dangling bags and tubes. It was a graphic visual reminder of all I’d endured. Once I emerged clean but exhausted my daily dressing change took place, most painful was the adhesive of the dressings yanking my hairs out and inexplicably finding new ones each day.
After that came lunch, and that was essentially a lucky dip of discovering what my newly formed and temperamental stoma could cope with. There were a few definite no-no’s the patronising pamphlets warned you about. Popcorn and nuts made you swell up like the baddie at the end of Live and Let Die, for example. Most other things would be discovered via trial and error, or as I like to call it, ‘does this make me howl with agony 2-8 hours after consumption?’
There were two key shockers for me. I had a small portion of peas, which were very nice. About an hour later my Stoma hole began to itch. Gingerly, I peered down at the Stoma bag (see through, so you can see everything), and like a bleary eyed tortoise peeking out of his shell in the dawn light, there was a fully formed pea, a little shitty but proudly maintaining his bright green hue. He pinged out. Then another did. And another. And another. For 90 minutes I turned into a Fruit Machine that had hit the jackpot. Best steer clear of the peas, then.
I also had an inexplicable rice dish with fish and hidden chunks of raw onion. Suffice to say, I spent the next 48 hours gagging on the fermented onion miasma that poured out of my side and clung to me for dear life. It was, and still is, a case of trial and error. There’s a small core of reliable foodstuffs that get boring pretty quickly, but depending on how things are prepared, how I’m feeling, other issues such as infection, I’ve learned to give things a go if I can and not let it rule my life.
But for the first few weeks, sadly, it did rule my life. Liquid still poured out and found every possible exit under my dressings and onto my clothes. It made me desperate and miserable. Sometimes I’d stare at the bag, terrified it might fail. Sometimes it did, sometimes it didn’t. One night it leaked seven times, and as I sat on a chair changing my clothes while a nurse changed my ruined bedding, the pain of multiple dressing changes and a general sense of self pity overtook me, and I burst into tears. I remember days where the stinging pain of the leaks drove me mad – more than once I was offered gas and air. I was growing resentful, even though having an ileostomy meant I could live. It was a fact that I had to have it, but it just felt so cruel and unfair. Woe, indeed, was me.
But life wasn’t content with kicking me in the bollocks, it also wanted to steal my lunch money and call me ‘fatty-fat-fat-fat’. Shortly after my return to the regular ward I started suffering dizzy spells. I went to the bathroom to empty some bag or other and within seconds I became light headed and the room started to spin. I got short of breath and my legs started to give way. Thank heavens for sturdy porcelain, because that was all that kept me upright. And with that, I became virtually bed bound for a month. I could only sit in chairs for maybe 15 minutes before I became woozy and breathless. I staggered down the corridors on my physio walks until they got me to push a wheelchair to collapse into, and eventually gave up on me, leaving me to stew in my juices in front of Homes Under the Hammer.
I do like to cause Stan Laurel levels of head scratching and make medical professionals question their years of training, and with this I was the Godzilla stomping over the Japan of their medical knowledge. I had a brain scan (like a CT, but takes longer and your head is held in a Velcro vice), and the only thing they found was ‘a fatty deposit on top’ which I found was a hurtful way to describe my noggin, especially with all the weight I’d lost. There were two other things I discovered – 1) Sending your wife and mother a text saying ‘they’re giving me a brain scan to rule out brain cancer’ can cause stress und upset, and 2) nurses have but one joke about brain scans, it is, of course, ‘trying to see if they can find anything up there, are they?’ Har-de-bloody-ha. I was prescribed testosterone, and warned it may make me angry. It just made my thighs sticky when I smeared it on. I had regular visits from medics and a Cardiologist, who could find nothing wrong. I was put on drugs to raise my blood pressure. Lower my blood pressure, lower my heart rate and to steady my breathing. But still, I couldn’t go 10 seconds standing without crashing into something. In hindsight I guess it was pretty frightening. As the rest of me healed my body stubbornly refused to let me walk around and 3 weeks in became 4, then 5, then 6.
Until I exploded.
Kerry, Ethan and my Mum had just left after one of their much appreciated Sunday visits and I decided to take a nap. After about an hour I woke up to a smell that seemed like I’d shit myself. I couldn’t believe my stoma was leaking when I hadn’t moved and WHY THE HELL IS THE SMELL SO RANCID? I called the nurse to assist and we soon discovered the fluid dribbling down me was coming not from my stoma but from under the dressing covering my absent belly button. Gingerly we peeled the soggy dressings off and unleashed hell. A pool of green slime bubbled up and made a break from the bedding. It smelt like Bigfoot’s dick. And it. Did. Not. Stop.
Yes friends, while medicine strived to identify the root cause of my ailment a flagon of poisonous pus had begun to thrive in the spaces vacated by Clarkson. Eventually, when that space had filled, it sought the weakest point to make its escape from – Mr. Belly Button, or Mount Vesuvius as I’d dubbed it. My nurse took just a little too much pleasure in squeezing a load of green goop from my belly button, and once it would be milked no more, it was well packed and dressed. Immediately my dizziness began to ease and I vowed to take videos and photos should it happen again.
The next morning I got up (to empty some bag or other, you get the idea), and when I got back into bed I peered down. It appeared that a large creature had sneezed across my crotch and thighs. Then a warm trickle started. Vesuvius had burst its banks with my bending, overwhelmed the dressings and exploded again. So we moved onto children’s stoma bags to stick to my belly, like a little sporran of pus, and they did a good job of collecting up pus that I could then milk into the toilet at regular intervals.
With that, being in hospital wasn’t really necessary any more. I was weak and had a naughty stoma to contend with but support would be on offer at home and people tend to recover better in their familiar surroundings.
But not me…
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