Autism – The Gothstomate

Convalescence Days: Week 1

Leaving hospital didnt mark an end to my endurance test of surgery recovery. looking back, I could say that this second week post-surgery, my first week of managing at home, was the hardest of all of the 8 weeks of recommended recovery time and as difficult to write about as it was to live through. While I looked forward to getting back to my own bed after a whole week put up on a plank of iron topped with an ex army roll mat, being able to control what I could eat and drink and having my kitties and David around me, I had absolutely no idea just what I was about to go through. By the end of that week I had become thoroughly convinced that I had been fobbed off, discharged far too early and left once again to simply “get on with it” as I had done from various forms of Care over the previous years, treated like a statistic or a normal “every day” patient, not someone with complex needs before even arriving on the cancer scene.

Friday – My First Day Home

I slept like the dead that first night, simply from the euphoria of being in a bed that wasnt designed to slowly disintegrate my spine. The first thing I did that day was have a shower – something I had not been able to have for a whole week, as I hadn’t been offered all that much assistance washing at a sink let alone being helped into and out of a shower. The sensation of finally being properly clean after all those days being dirty and greasy and sweaty and wearing the same pyjamas for way longer than I would ever allow myself under any normal circumstances, was beyond words to describe. To feel water on my skin, running through my hair, for the anxiety of how messy I looked or how smelly I was to just dissolve under the flow of the water, the feelings of empowerment in regaining just this one small element of regular independence. When I had first tried a Stoma Bag in the shower, it had filled up with water and fallen off. This time however, the real thing, was completely the opposite. the bag didnt even show any sign of being affected by its time in the shower, and when it did fill up with water ((which was just the outer skin, not the inside of the actual bag itself)) I simply tipped the water back out. I was then able to change the bag when I had come out of the shower and was mostly dry enough, and replace it with a dry bag. my first at home by myself, post-hospital bag change went as smoothly as if I had been doing it for the last decade. A shower was about all the activity my body could take at that point so afterwards it was clean pyjamas on and straight back into bed, where I emptied out all of the Stoma Information I had been sent home with. while I am unable to really do anything for the time being, I can at least read through the pile of paperwork. After just a brief glance, I couldn’t believe what I was reading.

why wasn’t I given this information before?

All of these leaflets were brimming with the information I had so desperately needed, but BEFORE my surgery. If I’d had access to all of this beforehand, I may not have needed to have resorted to google searches which had brought up so many of the most horrendous examples of living with a Stoma. I know that at that time my mind had been thoroughly made up that this was literally the worst thing to burden itself on my already mostly train-wrecked life, but I might have been even 1% less terrified than I was if I had been given this information then rather than just now. What I couldn’t find when I went through my bag of hospital provisions however, were any painkillers any stronger than regular paracetemol. This of course didnt touch my pain while I was in hospital and it wasn’t going to touch it now I was home. I got through to my GP and managed to get some Oromorph prescribed, which I was able to send David out to fetch later that day, but not without having to steel myself through a good couple of hours of being pummeled by pain. While I had been able to get up and walk about easier than I could a few days before, I still couldn’t sit or lie in any form of comfort whatsoever, and the most part of my day as well as night was going to be spent sitting or lying in some way or another. The best I could do was to prop myself up on my hip, but after a while that made my shoulder and hip ache and my weight-bearing arm to go dead. I had also asked the GP whether there was any chance of getting any extra help or assistance, given my pre-existing disabilities and the toll that all of this had taken on my mental health already, but the outlook for anything like that was utterly bleak. Community Care for a disabled person in their thirties is all but non existent in my area. I had also considered asking for a CPN (community psychiatric nurse) given the current state of my mental health but that didnt even get considered, let alone any suggestions offered.

Once again, it was clearly up to me to somehow muddle my own way through to get myself healthy and sane. I might be immobilised but I can at least start planning what I might want to do. From that first day back home I decided to start noting down what I was eating and drinking, so I could then compare my notes to stoma activity, to work out what may have caused an issue if one arose and what foods could possibly be considered as “safe”. That was about as much brain activity as I had the energy for that day. David made me my first dinner at home, a pasta with tomato and chicken with the serving size vastly diminished compared to what I was being fed in hospital, and I vaguely paid attention to a few My Little Pony episodes.

The Weekend

I think that first day home must have been some kind of calm before the storm, as over the weekend, that time when barely any professional help is in reach, was a blur of intensity that tested all of the strength of character I had managed to regain since surgery. It went beyond the suffering I had already fought through during my week in hospital, and beyond anything I had expected thereafter.

The effects of the catheter on my bladder had started to show it’s ugly presence first thing on Saturday morning. Visiting the toilet was more like opening the valve of an incinerator with the blade of knife. My muscles were exhausted from holding it all in and when it came out it was like passing liquid fire, and as the day progressed, I constantly felt like I needed to go to the loo and never felt truly relieved. This clearly wasn’t right and in no way bearable even for the short term, so we made the journey to the Out of Hours GP where I was put on some Antibiotics.

Once again, I felt contaminated. I still had no idea whether my surgery had worked, whether it had been worth any of this grief I was having to endure. Worth any of this pain or immobility. Worth having to make sure I’d taken the correct meds at the correct time and administered my own injections correctly without screwing up or forgetting altogether; worth all the limitations caused by the various effects of the surgery and all the pain that went with it; just a small sneeze was agony across all of the middle of me, and even the smallest production of wind took hours to pass through and passed like a belly full of razors rather than gas, worth a body that was constantly sweating and itchy and coming out in angry red patches and nasty bumps, and now a water infection courtesy of the catheter and a surgical wound that by the end of the weekend had doubled in size, was hot to touch and constantly leaking. I had been sent home with only one more large gauze pad to cover the wound, and it very quickly saturated that. Having a sensory aversion anything bulky between my legs meant that any heavy duty sanitary pads or anything like that was out of the question, we couldn’t find any gauze pads like the ones I had from hospital and I still couldn’t get into even my biggest knickers. In the end, I had to resort to use puppy training pads, but they made being hot and sweaty even worse and I was constantly anxious that they would slip and I would wreck my mattress and sheets. there was also the constant awareness of a bad smell around me. Not like a poo or toilety smell, but a strange, vaguely medical, sick person smell. A bit like that one that you notice when you go into a hospice or retirement home or care home type setting.

Monday

After 2 insufferable days, I had to call the GP out. Initially she had wanted me to come into the surgery, which would have been a good 15-20 minute walk. I told her that would be impossible as I could barely walk around my own home, and I told her how I had to get a taxi to the Out of Hours GP which normally I could have walked to within 5 minutes. after she had paid me her visit i was put on much stronger antibiotics as they now had to combat a badly infected surgical wound as well as the water infection left by the catheter.

The rest of that week

Bad night after bad night came and went. I was up and down with baby stoma like it was an actual human baby, no relief from the throbbing in my hips from constant side lying down and the pressure of my own body weight, something that was only alleviated a little when I got a cushion I could put under my knees to be able to lie on my back without any pain from the surgical wound.

Days were spent little different to my hospital stay and they began to feel unbearable, stifling and devoid of any purpose whatsoever. Pointless day after pointless day blended into each other. My thoughtless downstairs neighbour had his music turned up and beating through my floor and even my 2 sensible Cats were jumping on my belly. There’s nothing I hate more than being inactive, with nothing to occupy myself with other than staring at a screen, so much of my energy being taken up with my body attempting to mend itself that I didn’t have any spare to really concentrate on much else, even the things I was trying to watch, despite the desire to start doing something, anything, that engaged my brain. To read, to write, to plan, to create, anything.

Sisi was truly sorry for jumping on my belly..

Of course the other thing I was doing in addition to watching various things and wishing I just stopped existing was getting up and down to tend to the new stoma. It was bruised, bleeding, sore and so overly active I was changing bag three times, four times, five times, to the point where I started to get frightened of eating in case it had some kind of adverse effect and caused more grief on top of the grief I was already enduring and in order to stop the constant unpredictable activity. So far no leaks or blow outs had happened but the ever looming possibility of them happening was always in the back of my mind. After all, my weight ballooning as much as it had during my time in hospital had made me feel so disgusted with my body size that surely missing a few meals might work in my favour and reduce just an inch or two so I could feel marginally better about how I looked.

I truly began to wonder if all of the positive talk I’d had in hospital was actually just a whole bunch of lies to keep me above water and get rid of me as quickly and early as possible. I wondered if it had even been the right decision to send me home when I was. I even wondered what the hell I had let them do to me. Had I made a mistake? Should I have walked away from surgery instead of allowing myself to be put in this position? Towards the latter half of this godawful week,I was back to the sensitivity I had been pre op. I didn’t feel safe at home. I didn’t feel capable of looking after myself even with David just in the next room. No one was coming to help and I felt like I had been completely abandoned, like I had been by every other professional for the last 10 years. There was not going to be a district nurse visit, or a stoma nurse visit, nothing I had been told I could get was happening. The surgical wound check, the mental health care, any care assistance whatsoever had been ignored. I believed they just wanted me to put up and shut up and get off their case. Even David was running ragged and I felt awful expecting him to juggle my care and work from home so I restrained myself from asking for any assistance unless I was truly desperate for it. Every impression I had of any kind of aftercare hadn’t materialised and I felt I had been dumped and cut off. I was on my own. And I was suicidal. I wanted to tear myself out of my body to be free of the constant sensory assault, discomfort and immobility. I couldn’t see an end to any of this. Maybe three month colonoscopies and cancer checks in hospital really was the lesser of two evils, instead of enduring permanent running to the bathroom with a stoma that was completely out of control, a wound that was permanently leaking, a body that was permanently fat and in pain and incapacitated and impossible to keep cool and keep clean and keep clothed, let alone shed weight and look even vaguely pretty.

For all of those who had been preaching that my stoma had just saved my life, i really was asking,

“what kind of life has it saved?”

At this point my life was one with no quality, no comfort, seemingly endless inertia and perpetual fatigue. I couldn’t think surgery had saved me because I couldn’t be me anymore. Couldn’t death at least go my way? Be on my own terms? At this point, nothing else was. I needed to either be sent back to hospital or be dead. I knew I should have been feeling grateful. I knew so many others had gone through so much worse. I know I could have had this as a little kid and not a 30 something adult. I knew. I KNEW. I was straining so hard to feel any kind of happiness about this while waiting for the inevitable character assassination for not being an inspiration.

I wondered alot on just how much my existing disabilities had been overlooked and my mental health conditions ignored, that perhaps I had been treated as too able, too neurotypical, expected to be doing everything for myself far too soon and lazy and unwilling if I didn’t do things by myself when asked to even when I didn’t feel truly capable.

It all kind of accumulated in me ending up on the bathroom floor. I was trying to take a shower, but my Stoma had other ideas and started getting active, and every time I had gone to do a bag change she hadn’t finished her activity and I was fed up of making a mess of my bathroom sink and getting the timing so drastically wrong and feeling sore and stinging if I touched it with literally anything, and I felt so hot that the bathroom floor was preferable to going back to bed because it was cold. Also a bathroom mat was easier to clean from an oozing surgical wound than an entire mattress. The GP had done all she could do. Hospital wasn’t going to take me back, even to a psych ward. I had worn out every avenue of help. All I could do was lie on that floor and bawl, wishing I was dead instead of in pain and leaking and boiling and incapable of everything.

But life takes some strange and bizarre turns. At that darkest moment of that whole darkest week, came the biggest flash of light.

Homeward

I was sent home exactly one full week Post-Op. The span of those six days had felt like an entire lifetime, I had felt over a thousand emotions, traversed one side of the spectrum and back again, multiple times over. I desperately hoped that being back at home would bring me the real rest I desperately needed. I had dreamed all week of that feeling of unbridled freedom, heading out of hospital with a smile from ear to ear because I had defied all expectation and was far further down the road to recovery than was usual at that stage. However, when the release day finally arrived the experience couldn’t have been more different than the absolute polar opposite. In fact, Im not even sure letting me go that soon was even the best idea. It wasn’t going to get easier from there. It was only about to get a whole lot worse.

At 3am I woke up to go to the loo. as I came back to bed, I discovered the enormous wet patch on the sheets. my heart was in my mouth as my first assumption was that I hadnt woken soon enough to make it to the loo, but that was quickly put to rest when I realised how wet the dressing over my surgery wound was. I had to call in one of the night shift nurses to change the sheet, but I didn’t have the dressing changed so I was left with a soaked dressing for the rest of the night. There was no chance of getting back to sleep after that. I just couldnt get comfortable. By this time already I was starting to doubt if I would be released today, if my wound was leaking this badly it might not be such a good idea. however I wasnt sure of how much longer I could manage on that bed. I watched several more episodes of Desperate Romantics and a Channel 4 Documentary on the horrors of the Jeremy Kyle Show – and how it led to the suicide of one of its on screen guests – and watched as my room got gradually lighter and lighter.

by the time the shifts had swapped over and I had the first of the morning shift come to do their rounds at my room, the emotional weight had finally taken its toll and I had broken. I truly didnt think I would be going anywhere and that to send me away now that I was so vulnerable would probably be the worst possible plan. However, no one seemed to be concerned with the state my surgery wound was in, or the state my mental health was in either. I was going home that day whether I felt like it was a sensible plan or not.

I had the dressing changed on my surgery wound later into the morning, and with my emotional state the way it was, my pain threshold had been significantly lowered. just removing the sticky patch was catching on every inch of my skin, burning and stinging as it ripped away. I was then shown the wound with a mirror and I instantly felt sick. As I had suspected days earlier, I had been completely sewn up. the cheeks were closed shut and I didn’t even have a “crack” anymore. I wondered how the hell I was going to be able to sit again, how I would be able to do anything that involved having to stoop or squat, and right then it was constantly feeling like it was tearing apart with whatever minor move I made.

in the later morning I tried to get to my case and put on the clothes I had packed for my journey home, but I was devastated to discover that none of them fit. everything I had packed, a size bigger to count for swelling, wouldnt get above my hips. I had put on a whole 2 clothes sizes in just a week and I felt everything inside me sink to the floor. That was truly the last straw. All I wanted from that point was to drink wine and die. how could I have been saved to live as something so fat and ugly and utterly useless? at that point I wanted to be transferred to a mental health ward, but it seemed that the hospital had already washed its hands of me before I had even made it out of the door.

the care and understanding I had experienced right at the start was now all but gone. One nurse couldnt understand why I was so upset. I was about to go home, I should be all smiles and feelings of delight but all I felt was crushed, uncomfortable and in pain and utterly shameful at how big I had let myself get in just a matter of a week. I couldnt even look at myself, a dirty, sweaty mess in pyjamas with shoes. I never wanted to eat again. At that moment where I was still so desperate for support from another human, especially one that knew what they were doing, I was simply left. It was like I had been discharged and had gone back home already, not still lingering in my room, just waiting. it was like I wasnt their problem anymore so my pain and distress was allowed to go completely ignored. in undescribable agony, I somehow got my stuff into my case. there was no comfortable way I could sit or lie so I spent hours on my knees on the floor, leaning over the bed, just bawling as the hours came and went.

For all of their wanting to get rid of me, they seemed to take their time in actually making that happen. A whole five hours had passed with me being left to my own devices and it was starting to get dark. I managed to get on my feet and shuffle out into the corridor to try and find out what was going on, and the receptionist even wondered why the hell I was still here. she thought I had gone hours ago. finally, they got two porters to get me and my stuff out of the Ward and a taxi ordered to get me back home. Having to sit on my hip in the wheelchair I was pushed down into the reception area of the Hospital Concourse, my bags placed around me, and left. Again I waited. I started to get a dry mouth and wanted to get at my bottle of water but my legs had gone dead from how awkwardly I was having to sit. The call for the taxi I was expecting never came. Another hour or so had passed when a Nurse from my Ward spotted me on her way out at the end of her shift.

“What are you still doing here?? why haven’t you gone home yet??”

Apparently no taxi home had been called for, and for all I had been aware of that, I could have been left sitting there all night. This nurse managed to get hold of an empty taxi outside to take me home and I sort-of-lay-sort-of-sat on my side for the journey back. the driver showed little mercy with bumps and stops despite being told I was only six days out of surgery. red lights. tailbacks. speed bumps. it was like I was being thrown about at every opportunity. I was conscious enough despite the pain to know where I was, and to know that he was going in completely the wrong direction. I had to tell him a few times before he realised what I was trying to say, and had somehow been given the idea that I lived on the opposite side of town to where I actually lived. When I was finally brought to my block of flats, I was dropped off and left. I had to call David through my intercom to ask him to get all my things – and me – up the stairs and into the Flat.

for what was supposed to have been such a joyous occasion, getting home was a trial in distress and neglect and was utterly traumatizing. I know that Hospitals and their staff have been cut down to the bone and they can barely cope with the numbers of people they are charged with caring for, especially after a global pandemic, but surely not to such an extent as this? I had just had my life saved, and yet my life – and me – seemed like garbage to be discarded as quickly as possible.

My Week in Hospital.. Continued

72 hours and 1 blood transfusion later..

The further I got into my bedridden holiday on the Costa del Colostomy, the more I seemed able to observe, record in my notes and recall from memory.

DAY 4

I found myself suddenly awake while it was still pitch dark, feeling so dizzy and shaky it was like I had just tumbled out of a washing machine, mid cycle. I had woken from a dream so vivid it had felt as though I had been reliving something that had actually happened. I was genuinely frightened that I was about to go into some kind of arrest as my chest was thumping so rapidly. I pressed the buzzer and called in a nurse, who also asked me to tell her what my name was and where I believed I was, so I told her clearly. “My name is Kurona Dargarth, I am in Heath Hospital, I have had surgery for Cancer.” she did a blood pressure check and said that it was all normal, so I put on a guided meditation and managed to get myself back to sleep, without anymore strange impactful dreams. When I woke again, in morning light, I still felt spaced out and “not all there”. The fourth day was Monday, and I had spent the weekend waiting, quietly nervous, to see my surgeon for the first time since the Op. When he came in to see me that morning, I was in for something of a surprise.

Mr. Ansell said he was impressed by the speed of my recovery, and he had thought I was going to be “alot worse” at this stage. He also wasn’t expecting baby stoma to be working as well as she was already. I was taken aback a bit. If this was such good progress, what on earth would I have had to have endured if I had been at the stage he expected me to be? The last few days had gone by like living through ten years, not 72 hours. I felt like I had barely scraped through, but Mr Ansell’s enthusiasm and positivity stirred something. I must have monumentally underestimated my body’s own strength. Its own resolve. I knew at that point I owed something to my body. I realised a need to put more faith in my own self and quit the destruction I had been so accustomed to for so many years. My body deserved more respect than to keep abusing it. I needed to use that point to garner as much direction as possible. No more crap in my body. No more crap in my brain. Start now. I underestimated myself, and possibly my faith too. I had certainly underestimated my surgery team, expecting them to further ruin an already ruined life. Thank you Mr. Ansell and Team. Thank you Science. Thank you God. Thank you Goddess. Thank you Crystals. Thank you Body.

That wasn’t the only significant lesson I learned by day four. After Mr Ansell had wished me a good recovery day and gone on his way, I let my mind tick over the past 72 hours and how, even in my most helpless state, I found myself still thinking about the feelings of others and putting all my effort into being a good person to them. The Nurses, for instance, how difficult it had been communicating what I needed and despite not getting it, I was still concerned with being a good patient and not putting them under more stress. The last thing they needed was another difficult, obstructive person to have to deal with. I honestly wasn’t happy with how I had been pushed around too fast or left to largely manage myself, but an inherently bad person would have kicked up more than just a fuss about it without a single thought, and not given one crap what effect it had on anyone else. That just isn’t me.

I also realised that for spending the last several days feeling utterly helpless and dependent on others for even the most basic functions, I hadn’t felt all that undignifed or humiliated despite all my fear of it pre-op. In these moments you are far too exhausted from the round the clock job of healing and in far too much pain to really care all that much. Etiquette has no place or importance during this time.

My catheter was taken out that morning and there was talk of me going home before the end of the week. I couldn’t believe what I was hearing. I had improved so fast I wasn’t needing to be kept in even a full week, let alone the two weeks I had prepared for. The challenge for me that day was to be able to get myself from the bed to the toilet in time when I wasn’t sure how well my pelvic floor muscles were going to work. Washing myself was still hard work, and that morning I tried out the hair washing cap I had packed. It worked out fairly simply, but perhaps not the best thing for hair as long and thick as mine. I still managed to get it into a tidy plait without the aid of a mirror. Not ideal, but better than how dirty I had been feeling. I also still couldn’t sit properly, having to lean far forward which made my remaining drainage tubes and new Stoma sore, or prop myself up and put all of my weight from one side to another.

Got my hair into a tidy plait, despite not having a mirror

By the afternoon, the weather outside was bright and spring-like. I had got up and walked around the room a bit in some uplifting sunlight and even made it to the loo, confirming that my bladder hadn’t got too catheter happy and was showing no issue in resuming normal service. I also managed to get to my bags and suitcase and get out a few more of the comforting things I had brought along, like my new fluffy dressing gown. My colorectal nurse Angel dropped round for a chat, and we had a lengthy heart to heart about moving forward from here. She seemed pretty enthusiastic towards my new outlook and that I want to use this as a point to turn things around. She said she never wanted to see me in the position I was at diagnosis again, and we both agreed that purgatory was truly over. I think she was focusing on the cancer-based purgatory that I had hauled through in the last five months, but I was quietly thinking about the purgatory I have been in for the last 10 years. I needed to get out of hospital and heal first, but once that was out of the way I knew it would be the perfect time to start over from scratch, a fresh new stoma-life. I even caught myself going online and buying new goth clothes, despite everything I had feared about not being able to keep my signature style anymore, by this time I just thought, “screw it. This teeny red thing on my waist isn’t going to stop me wearing the clothes I love,I can adapt instead of quit.” Maybe losing my bum was the price I needed to pay to untangle my brain.

Despite the pain, I’m still standing with Ukraine

DAY 5

That was the first night where I had a decent sleep since being put under for the Op, a night that wasn’t disturbed by ward activity, observations, weird dreams, drugs or pain. The highlight of my fifth day on Costa del Colostomy was that the toilet in my room decided it was going to leak, and subsequently drip into the room downstairs. And here was me worrying I was going to be the one leaking!! I couldn’t help but have a silent, wry laugh at the irony.

It was a more painful day, despite the decent sleep. My first drain tube was removed and I could actually feel it moving inside me as it was pulled out, an excruciating experience that I never want to have to go through again, but knowing that I have another one that has to be removed in less that 48 hours time. I’m surprised I didn’t scream the whole place down. I also had my first walk out of my room and down the Ward with the physio team, and up and down the stairs a bit, but that felt like trying to conquer a mountain in the Himalaya with the amount of pain I had plummeted into. My backside was aching right into the bones, as if I had been sitting for hours on a concrete floor, and I had a very quiet Stoma for hours but sharp pain all up that one side of me from belly to ribs, and it was verging on impossible to find a position to sit or lie where I was comfortable for more than a few minutes. Fortunately that pain subsided a little after the stoma decided to get active after dinner, so it was likely bloat or trapped wind from having had that tube removed. I was able to settle and resume watching “Get Back”, charting in excruciating detail the attempts made by The Beatles to return to live performances but ultimately culminating in their final, strange performance on the roof of their recording studio. My fondness for the Beatles (especially as a symphonic metal and dark ambient loving goth!) is a massive example of Neuroplasticity in action, where I had gone for hating that twee, overrated band of yesteryear to finding that their uplifting songs and lyrics helped get me through the original pandemic Lockdown and now through major surgery.

DAY 6

The most painful plumbing system.. Ever.

I had got so high on things improving so quickly that this day was something of a crush. It was like going 2 steps forward and one step back. I was having the same pains as the day before but this time they wouldn’t subside, and I could barely stop myself crying at even the most insignificant thing, even taking my blood in the morning was leaving me in tears with no explanation for why. I also bawled like crazy when I finally got to see the Dietician in the afternoon, listing in detail all the reasons why I am so fat and why I can never lose weight and why I utterly hate myself for having no control and failing all the time despite trying practically every diet solution going and hate food and drink for making me so fuck-ugly. I told her in desperation that I don’t want to be fat with a stoma and my body deserves so much better than what I had given it over the years. Her advice was to focus on healing over dieting, as dieting becomes all consuming and has the complete opposite effect.. Making you hungrier and wanting to eat more rather than less. I hadn’t really thought of it that way before and was a completely different and fresh perspective.

The effects of boredom by Day 6 were truly kicking in and not even something as engrossing as Get Back was absorbing enough of the hospital vaccuum. I finished that, watched a docuseries on the Clydach Murders and started watching Desperate Romantics (only 12 years too late!!) the BBC Drama on the lives of the Pre-Raphaelites, my heroes of the Art World, but still the day dragged on, lying from side to side relieving my arms from pins and needles and cannula cramp and my hips from aching, then trying again to sit up.. No chance. I was about ready to leap pout of my wind by this time, even though I wasn’t able to actually do anything other than what little I was already doing. I was also really beginning to feel the effect of almost a week without a proper shower. As someone who usually showers every day, just a basic wipe down over a sink simply was not enough to keep me from feeling utterly filthy, nevermind having to do it all on my own while in possibly worse pain than I was at the start. Whoever thought that doing so little would be so exhaudting. I several times had to pause what I was watching to take a cat nap, but I was so frightened that I wouldn’t be able to get comfortable again I didn’t want to put my head down to catch any real sleep.

By the evening, I had been seen by Tracey the Stoma Nurse and had been changed over from clear stoma bags to the closed ones I was going to use from now on, and knowing me oh so well, she went straight for the goth ones..Salts Confidence Be in black. I even managed to change bag by myself later on, unsupervised as I wanted to test how much I had learned so far. I was still very much in two minds whether I would be going home the next day or not, given just how much pain I was in and how my emotions had suddenly taken such a dive despite all the things that were apparently going so well, but as daylight disappeared on that possible final night in hospital, it left a beautiful parting gift through my window.

My Week in Hospital

Full board at the Costa del Colostomy..

I swore Pre Op that I would write down and record everything, but I had no idea really just the effect the surgery would have on my consciousness, my concentration, or my ability to string things together in order to write down and record, or to do things, or to communicate. I barely even processed much of the time that passed immediately after my Op or most of that first full day I spent with my eyes open. The notes I had promised myself to make were at first very minimal and sketchy, but as time wore on, I gradually became more aware of what was going on. My stay in Hospital following major surgery was, despite all of my forward planning for almost every eventuality, everything that I hadn’t expected.

DAY 1

My recollections of my first full day are scant at best, even with recorded notes. I made no observations really of what was going on around me, anything I was doing, even what the weather was like outside. I can’t recall whether I was drifting in and out of consciousness like I had been the previous afternoon. I noted briefly that it was like being drunk, unable to think straight or concentrate. Where I expected to be in almost constant agony, instead it was itching. Every inch of me was itching as if it was having an allergic reaction to thin air. I even had to ask the nurses who came to check my levels and blood pressure if they could do a full body scratch, as just about everywhere was unreachable. The pain seemed to just be delayed, and properly set in after I had made an attempt to have a quick wash and get out of my scratchy hospital gown and into my own nightdress. Just trying to change position in bed was exhausting and agonising, and no position felt comfortable for very long. Trying to relieve one pain somewhere just caused another somewhere else, I was in a sensory nightmare and a tangled mess of limbs and wires. That day passed quiet and lonely, hungry but not allowed food as it was still too soon after the operation.

I found in dismay that my Tablet wasn’t working despite me prepping it up before I came in, so I had to settle for my using my phone for all forms of entertainment. The first thing I opted for to pass the time was Attenborough’s Green Planet on BBC iPlayer, as I didn’t have the energy to concentrate on anything where I needed to follow a storyline, and I could happily drift away to the sounds of his voice, something I would often do as a tonic to days of illness. One of the evening shift nurses who came in to check my levels was quite interested by my choice of entertainment, rather than radio or daytime TV or sport like the other patients in the Ward were occupying themselves with. The whole time that first day I could feel something within me was missing, and couldn’t quite figure out what that was, until I realised it was anxiety. The rampant anxiety that I had endured pre op, that I had written about in all of my past posts here, where my mind had convinced me that anything that could go wrong with my stoma would definitely go wrong, since that was what generally happened to me. It was gone. Absent. I remember looking at my new baby Stoma, bright red in her huge see through bag, and thinking “ok. Whatever happens, happens.”

DAY 2

While I had drifted through the first day mostly left alone to rest, the second day couldn’t have been a more different experience, which left me feeling like all of my efforts to be comfortable while in hospital were becoming grievances for my nurses. They weren’t gentle and patient like they had been the day before. This time they came across to me as bossy and pushy and overbearingly assertive, and left me feeling worried that I was coming across like an uncooperative diva. When they blustered in that morning, after I had gone through a night of interrupted sleep after a patient from the male end of the Ward had wandered across to ours and spent a good few hours arguing right outside my door as to where he was, why he was here and how he shouldn’t be here, they wanted me up and on my feet at lightning speed with little regard for how I felt about it. It was a little taste of being a statistic or a box to be ticked rather than a patient to be treated, least of all with respect. I have difficulties in communicating my needs already as someone with an Autistic brain, but in my condition as I was I could barely get anything coherent between myself and them as they hustled me into the side chair and got me to do my body wash. They complained at length that I had too much stuff out and they had no room on the small table to put things down that they needed to use. I was in too much pain, feeling dizzy and sick and absolutely not ready at that point to be doing anything for myself, let alone explain that I had brought sensory comforts from home because I was autistic and had mental health conditions and was in hospital for major surgery for the first time in my life with no one but myself due to the ongoing covid restrictions. I even tried to point out my Autism Hospital Passport, meant to be there to explain for me when I couldn’t, but that was tossed aside on a windowsill well out of my reach, forgotten and ignored. It wasn’t like there was anything I could have done about it anyway, I couldn’t even reach my water jug because I was in too much pain and they still complained that I wasn’t drinking enough. The last thing I needed in those earliest days of recovery was to feel so under pressure to get on with it and heal quicker.

At least I was now allowed to eat. I was so desperately hungry that any thought of upsetting baby Stoma and having some kind of blowout or leak or other embarrassing poo disaster didn’t even register. My breakfast was just toast with a bit of jam, but I scoffed it all the same, albeit it in small, well-chewed nibbles. Maybe my pain was so relatively absent the day before because so much of me was still numb from various forms of anesthetic. It must have been during the second day that it truly had begun to wear off, and as my feeling started coming back I started experiencing some different scales of pain. One especially was where my rectum and anus had been removed. It felt empty and hollow to try and hold my pelvic floor in and realise that there were muscles that were no longer there, and it felt like trying to grip a void. When I had to haul myself onto my feet and try to sit in the chair the pain that gripped me was beyond anything I had experienced, even well beyond the pain of my last surgery. I felt like I had been stuffed with soggy sponge and then had my actual bum cheeks sewn together, so far beyond the feeling I was expecting. I thought all the trouble would be with this alien opening in my belly and I would mourn the missing piece between my legs, where all that had been sewn up was where the hole had once been. I wasn’t expecting this wet spongy bulge that I couldn’t put any form of pressure on without pain that was making me scream out loud before I even realised I was screaming.

It was also the first time I had my new stoma drained. I was in a clear drainable stoma bag so I could see everything that had been going on. All day I had kept it hidden under my night dress, refusing myself permission to watch it’s activities despite all the new and strange feelings it was creating. I hadn’t eaten since breakfast by this time as I had felt too queasy to face any food at lunchtime, and still didn’t want much for dinner either, and I couldn’t believe that my stoma could have produced so much when I had eaten so little. I felt so bad for the nurse who had “drawn the short straw” and had to do the draining. She had to squeeze the bag over one of those kidney shaped cardboard dish things and when it came out, the smell hit me like a truck. That unbearable, pungent stink filled the whole room and I instantaneously retched. Is this it now? Is this what I have to look forward to every time I take a trip to the bathroom, having to stop myself being sick when changing my bag? I broke down for feeling so utterly humiliated by my body’s own actions, feeling awful for that poor nurse who now had to dispose of the contents, stinking out the whole Ward in the process. Why do human bodies have to be so disgusting, and there is nothing we can do about it?

I had run out of Attenborough to watch by the afternoon so decided to try out my concentration by watching a fluffy historical drama. It was a series called “The Gilded Age”, written by the guy who wrote Downton Abbey, and since I found Downton generally a snore-fest I didn’t have high expectations on this and didn’t think it would require too much concentration to follow it. After 2 episodes I was hooked. It was a drama between the rivalling families of New York City’s upper crust in the 1880s, and the challenges of breaking into the established society when you were self made or ” nouveau riche”. As a Historian, I was bowled over by how well they portrayed the vacuousness of social concerns and reputations and the lengths they went to in order to fit in, and just how shallow they all were for the people who were meant to be the epitome of society’s progress and future. It was also inclusive with both a successful black female main character who was very well accepted amongst the main cast of characters, and a gay character willing to live in denial of his sexuality in order to gain a good dowry from finding a rich heiress. It was so engaging I managed to let a good few hours pass by without focusing on pain and discomfort.

DAY 3

Being awake in hospital was just a different kind of sleep. A sleep where my eyes were open and I was acutely aware of the pain I was in, and how alone I was despite all the activity and noise around me. Long, dead hours with little to focus on save for the discomfort I was in. I couldn’t get comfortable no matter how hard I tried. Lying on my front was out of the question. Lying on my back hurt the surgery wound. Lying on either side gave me pins and needles in my arms and hands and a chronic aching in my hips. I was either far too hot or too cold. The desk fan I had in my room was constantly going so I didn’t get too sweaty, especially since I was starting to notice I was getting sweat around the stoma and getting worried about possible skin reactions. Plus, the previous evening I had to call the nurse back to empty my bag a second time as baby stoma had decided to be productive for four hours straight. I simply couldn’t bear the idea that it would be behaving like that every day and it further put me off my food. The whole inertia of hour after hour was starting to make me go silently stir crazy.

When the nurses came in to do their morning rounds I was hastily pushed out of bed again and onto the chair, which I still couldn’t sit on in any way remotely comfortable, and this time I was left to wash without assistance. Again, I was certain I was being expected to do far too much far too soon. Moving just a few inches was exhausting, while sitting and standing felt like all of my organs were trying to fall out from between my legs. Washing was such hard work on my own that I ended up feeling more sweaty and messy than I did to begin with. I couldn’t understand why or how I was being expected to do this so soon. I had been told only on my surgery day that I wasn’t supposed to be up and in the chair until Monday, and yet I was pushed to get up barely 48 hours after my op. I had also been told this morning that I wasn’t due any morphine for the pain after being told earlier that I could have it every hour. I had absolutely no idea who to believe, and I was stuck in the middle, ignored and in pain and trying my best not to be a difficult patient, doing far more without than with what I needed. I found communicating even more challenging with the Asian nurses than I did with the British and European ones. Because English was probably not their first language there was a communication difficulty straight away, add in Autism and it became virtually impossible to get anything across to them. I found that when I couldn’t understand what they were saying, they just said the same thing louder, and that made me feel stupid for not understanding them the first time, and I still didn’t get what I needed. I was seriously reluctant to even use my alarm and call them unless I really was in unbearable agony, putting up with pain was marginally better than the added communication breakdown.

By the end of that day I was overwhelmed by just about everything. The nurses had been getting concerned with my blood levels so they put me on a blood transfusion, so I had yet another wire to contend with in my battle to get comfortable. I was desperate to get other things from my case like my new dressing gown but I didn’t dare ask the nurses for help getting anymore stuff after they had moaned so much about what I already had. I at least got to have some good old comfort food for dinner, a bowl of Mac and Cheese with veggies, and as I had run out of Gilded Age episodes I went over to a series I had been meaning to watch for a while, Peter Jackson’s epic Beatles documentary “Get Back”, interspersed with another old sick day favourite, My Little Pony: Friendship Is Magic. Even with my entertainment I couldn’t help just wanting to drift off and get a few hours peace, free of thought or pain. The whole experience was a prolonged assault on my senses.

After realising how many words it’s taken to describe just these first few days, I have decided to split this post into 2.

Operation Day

Recounting this day is hard. I think my mind has naturally shut alot of it out and picking out the recollections is something of a challenge, so please bear with me. I made a deal with myself that I would write down and record every moment of my recovery process but I didn’t include the instances before Surgery, and just after I wasn’t in the most compos-mentis of states to actively write down more than a few scrabbled sentences. Even writing now, with a good and healthy distance of time between, it still involves having to peer through some very thick psycho-fog to pull out just the most significant details from that day while still maintaining some mental composure. It was the day where I truly believed I was going to die, or wake up to some lesser life that I would forever resent.

When I woke up that morning, I felt very little emotion as I had to put my very swiftest autopilot into gear to get myself out of the door. There wasn’t really time for any thoughts. I was just about able to throw on some clothes, make sure my last few bits were packed and my last 2 Pre Op Cocktails had been chugged before the intercom buzzed and the Car-bulance was here. At least this time I was able to take David with me. When I had gone in for my first surgery in December I had made this same journey alone.

Down the hatch…
It really didn’t taste as bad as it looks. It was actually quite pleasant. I had to drink eight of them in the 12 hours leading up to Surgery!!

At the last minute I had been told that I would have to show up at a different place, so true to form when we reached the Hospital we spent a good chunk of time getting completely and utterly lost, being given directions to go one way on top of directions to go another, until we ended up ridiculously confused, wandering through some vacant corridors that reminded me alot of the kinds of places I used to sneak around taking photos in, before somehow ending up outside on a road heading down into a car park and nowhere near anywhere we were supposed to be. David went and retraced a few steps to the nearest door to ask for yet more directions but I lingered back, feeling like all of this getting lost was some kind of omen trying to keep me away from having the surgery altogether and I dropped onto a kerb along the road and froze. I didn’t know where David had gone, where I was supposed to be, whether I was late or not, but didn’t care all that much. I couldn’t be touched with knives or scalpels out here. But David did come back. He led me to a door in the side of the building and I had to give my dead-name and paperwork and then was sent to a cubicle to wait. I sat there expecting it to be like the last time where I was left sitting for hours, contemplating what was going to happen to me and each hour being more anxious than the last. It wasn’t how it turned out this time. I had been in that cubicle for as little as five minutes by the time I was met by my team; my surgeon Mr. Ansell, my Colorectal Nurse Angel and my new Stoma Nurse Tracey. I was given the details and told I was the first to go in, and not be required to wait like last time. I was asked to go through the paperwork but by that time I had broken down. I told them I didn’t want it. I told them, in fact, most of what I have shared with you all in these posts on here over all of those tender Post-Diagnosis, Pre-Op weeks.

They gave me a choice.

They told me I could choose not to have the surgery. They told me that I could leave and go home right there and then, on the condition that I would have to commit to regular and penetrative check ups every three months, to monitor where the Xenomorph had been removed and to see if it came back. It carried the risk that if it did come back, it could be much more serious, faster growing, and possibly inoperable. Inoperable would have meant terminal. A long process but ultimately a death sentence. And one that I had chosen.

I cannot reiterate just how close I came.

But I stayed in that cubicle. I had come all this way. All that time spent forcing myself to come to terms with surgery being the only viable option. I chose between the anxiety of not knowing how much this surgery was going to impact on my life – all of those things I wrote in my past posts – and the Anxiety of not knowing whether an aggressive Cancer had returned, the Anxiety of every test result every three months, the discomfort of the tests themselves and the awful preparation process that I had gone through back in October that made me more sick than the actual Cancer itself. I told them to get on with it and get it over with. They told me I was making the wisest choice, whatever the outcome.

I was left with Tracey the Stoma Nurse to mark me up for where my new Stoma was going to placed. She looked at where my trouser waist band was sitting, not that it was the best indicator as I was wearing loose yoga pants that sat much higher up my waist than my usual jeans and leggings, and far higher than any underwear I owned. She then asked me to go to the loo for a urine sample where I took the pic below, huge belly exposed, face unmade and blotchy from tears, the last photo ever taken of me pre-Stoma.

My Stoma markings. I am used to irreversible tattoo’s but nothing like these!!

I returned to the cubicle with the sample and changed to my hospital gown, removed my jewellery and packed up everything, leaving just my engagement ring and Forget-me-not ring, I needed at least something of David’s presence to go with me this time. I was asked to don my hospital face mask, lie down and I was whisked away, corridor after corridor whizzing by, to the department marked surgical theatre. The cannula they put into the back of my left hand I remember was excruciating this time and it was in at a strange angle. The anaesthetist was admiring my Chernobyl Tattoo and he asked me to talk about Chernobyl as he administered the jabs. I asked him to “kiss my ass goodbye” before I drifted out of consciousness. I barely had time to feel afraid that I might not wake up.

And wake up I did. Unlike last time, this time I didn’t even know what time of day it was. I don’t even recall asking. I don’t even remember if it was light or dark outside. I was all a tangle of limbs and wires. It felt like every inch of me was hooked up to something or other. I felt in more discomfort than pain at that point and we still bewildered to have woken up. The pain in my throat I had been dreading wasn’t there. I took the photo below and posted it somewhere online to show my friends I was somehow still alive, before peeling down the sheets to get my first glimpse of my new addition, my new Stoma in its clear bag. Unlike how I expected, I was in a room by myself. The name over my bed was Kurona. There was a telly on the wall and a table with a jug of water, which I eagerly drank. I wasn’t on a shared Ward with others like I was at Christmas. I felt relieved that the sounds of hustle and bustle and chatter might be one less thing to affect my sleep, asked the nurse attending my machines to pass me Daenerys the white Fluffy dragon, and after that thought I remember very little else of that day.

Taken within a few moments of waking up from Surgery. I genuinely couldn’t believe I was still alive

The “worst” may not have entirely been behind me at that stage, but I could rest assured that I was through the biggest period of danger, and now I had to put my faith in my team, the Nurses of my Ward, the strength of my own body and dare I mention my own mind, to push through what lay ahead.

The Hospital List

This is probably the last post I will make Pre-Op.

Its both a blessing and a curse to know weeks beforehand that I am having permanent Stoma Surgery. Many Ostomates out there never got that time knowing. One blessing is that I am able to plan and prepare well in advance, and organise a Hospital List tailored to my own complex needs.

Before this, I have never stayed in hospital for anything longer than one night, even when I really needed to after my attempts (they just sent me home the next morning) and even after my first round of surgery to remove the Xenomorph. Before that experience, I had to look to the Internet for an idea of what I should bring with me for a Hospital Stay. There are plenty of articles out there listing in detail what you should pack for a Hospital Stay, but they are all aimed at expectant mothers. I tried looking up Cancer surgery and treatment but again, they were more aimed at how to get through Chemo and Radiotherapy. There wasn’t really anything for someone going to hospital for life altering surgery, so I had to think on my feet. Since then, I have a few experiences from that previous surgery to fall back on in adapting my checklist for this one.

I am supposed to be in for just a week, but since I don’t know how my body is going to react or if there are going to be any complications that might prolong my stay, I am packing for two weeks instead to be on the safe side. Of course if I was allowed visitors I could send things back and forth, but Covid has put a stop to that.

Pyjamas. What am I going to wear?? Certainly not hospital gowns, that’s for sure. I wore one during theatre and overnight last time and it almost strangled me in my sleep. Also they are also never made big enough to fit in boobs and bum and belly without something being exposed to the.. Elements. They smell clinical and the fabric feels rough and scratchy, not the most comfortable thing to be wearing when you can barely move. Besides straightforward comfort, I want to be able to wear things that are, well, mine. I am taking a selection of different types of Pyjamas, as I don’t know what my body will be capable of managing after theatre. Last time I was very bloated and sensitive and even my softest leggings hurt me around my waist, so I am taking Pyjamas as well as Knickers and soft trousers that are a size bigger than what I normally wear, so I don’t have anything digging into my waist. I am also taking several night dresses as I don’t know how long I will have to contend with catheters and other wires. I am also taking slippers instead of socks to avoid having to bend over to put them on.

Toiletries. Since I have never stayed longer than one night, I have no idea how I will be able to shower or maintain my hygiene. When I tried showering with a bag the first time, it filled up with water and fell off. I also don’t know how well I am going to be able to move my body to physically get it clean. I have invested in a couple of cans of shower foam that don’t need water or drying, so they can be used in bed, as well as some dry shampoo Caps that clean my hair without having to get it wet. Also I learned back in December that while I will be given plenty of painkillers, hospital doesn’t tend to think of the external effects of back-end surgery. This time I am taking things to counter skin irritations such as soft gauze, nappy rash cream, Andrex Toilet Wipes and Period Knickers, as like hell am I going to be given pads!!

Keep warm or keep cool? Mum’s experience in Hospital at the same time last year was cold. My experience last Christmas was that I was far too hot. So this time instead of packing fleecy winter Pyjamas, I am packing a high powered mini desk fan.

Entertainment. I don’t know how well I am going to keep myself distracted on waiting for outcomes and test results, but I still need something to counter all of those dead hours being unable to move or really engage my brain, which will be fuzzy from drugs and surgical trauma. I have a Lenovo Tablet that I have installed with apps like Netflix, BBC iPlayer (so I can continue my love of Peaky Blinders!) and also reading apps like Kindle for books and Readly for magazines, and Audible for when I am too exhausted to even manage reading. I was also given a hilarious Swear Word Colouring Book by one of my friends, so that will be coming with me along with my case full of Sharpies.

SENSORY/ANTI ANXIETY: Hospitals are not good places for Autistic people. They’re not good for people with Anxiety Disorders either. All of the bright lights, busy atmosphere and loud noises make for an all round sensory nightmare, let alone the acute anxiety from waiting for outcomes of the surgery itself and its subsequent tests to see if it has even worked. I also am not able to have anyone with me to help me communicate or understand the barrage of information I am being given through the course of my stay, let alone give me a hug. It is also not conducive for getting a good night’s sleep, and the idea of enduring a week or more of disturbed nights is not an experience I want. I took an eye mask and some silicone ear plugs last time and I was able to actually get some decent sleep, despite being woken by the nurses to check blood pressure and heart rates, so I will definitely be taking those again. I am also adding noise Canceling headphones for during the day. To try and counter the lack of comfort and hug-starvation I am taking a weighted blanket and a stuffed animal – in my case a Jellycat Fluffy dragon. I also want a few home comforts so I hope that my Ward will allow me to use my RGB night light, my own cup with my favourite Teabags and Coffee and my own water bottle with flavoured infusions. To help with communication, which due to Autism has never been my strong point, I am taking a pack of disability communication aid cards and something called a “Hospital Passport”. I had never heard of a Hospital Passport before my diagnosis and before my first surgery, my hospital hadn’t heard of one either, but found it very useful and very informative for my care.

A little gift for the Nurses. They’re paid to do their job, but I know all too well that they’re paid nowhere near enough and I still want to show my appreciation for their hard work, especially as I am a very hard person to deal with. For them I am bringing a little tin filled with mini cakes, all individually wrapped to counter the germ transmission risk! Besides, people rushed off their feet all day clearly need an extra source of sugar.

Lastly, there are just a few things that my last surgery taught me I desperately needed to remember this time round. One was having a Straw. When I woke up from my Op I found myself desperate for water but in too much pain to sit up and drink, so I ended up wearing more of it than drinking it. If I have a straw with me I might have a better chance at satisfying that desperate post-Op sense of thirst. Also I just remember to take my Walking Stick, so that I am able to get into and out of the Ambulance when I eventually get to go home, cured or not.

So the bags are packed. I’ve had all of the Pre-Op energy drinks. I have run myself ragged trying to fit everything into the last 24 hours. This is my last night as a Pre-op, bagless, normal-bodied person. See you all on the other side. See you all in the Stomaverse.