Body Dysmorphia – 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.

Diseased and Dysmorphic

Perfect illustrative representation of Body Dysmorphia, by Travis Millard. Found via Pinterest.

The date has been set. I am to be condemned, or cured, on 10th March 2022. I have exactly 10 days left to make the most of my bagless, normal body. The problem is that it is not “normal”. In fact, I already hate it. Now the body I already hate and have been fighting with for years is about to get even uglier. Even more unmanageable. Even more unacceptable. Even more repugnant.

One of the many Mental Health Conditions I have is something called Body Dysmorphia. It is where the body you look at is a completely different vision of the body you actually have, skewed by poor confidence and esteem. The pic above that I gleaned from my Pinterest Account is a pretty accurate artistic interpretation of the condition. Those who reckon I look “pretty”, like my partner David, my closest friends, and even a few randoms I run into online, I can’t bring myself to believe them. I can’t see whatever it is they see. To believe would mean I am promoting being Fat and unhealthy. I am accepting my size instead of doing everything I can to change it. And above all of that, I am being narcissistic. The last thing I was to is to be a narcissist.

I am size 18 and revolting, with or without clothes. If I drew a picture of how I see my body (which I can’t, because I can’t draw!) it would include all of these: Frizzy unmanageable hair. Early onset elderly person face wrinkles. Spotty mottled skin that has to be hidden under layer upon layer of makeup. Double chin. Unattractive broad shoulders. Heavy, sagging boobs with heat rash zone. Arms covered in Self harm scars. Smelly, sweaty pits due to Mental Health meds. Overhanging belly full of junk and booze and covered in stretch marks. More permanent smelly sweat rash. Thighs that are a chub rub zone.. And a “please don’t look here” when sitting down. Bum – don’t even go there. Giant calves mean I can’t wear any knee high boots. Feet are covered in eczema and blisters but at least they work. Attractive?? Sexy?! Hell.. I don’t even qualify as pretty.

I wish that losing weight was as simple as it is made out to be. I am up against so much more than self control and “watching what I eat”. I have battled weight issues and body size and shape for my whole adult life. It’s been a long and losing battle. I was going to the gym at least 3x a week, often more, I walked everywhere and was mostly active. The Pandemic destroyed all of that and the pounds piled on. In a time where I was confined to the four walls of my small Flat, my only sources of enjoyment were food and drink. During the first Lockdown I remember spending hours in the kitchen just cooking and cooking, stocking my freezer for the inevitable closing down of the entire world. And my anxiety towards the Pandemic led me to spend hours drinking. I would pour what was probably a triple measure of Gin, drink that while I sat on the bed out the way of David as he worked from home in the other room, then got up and poured another. And then another. And then another. Not to mention the bottles of Red Wine. I was likely borderline alcoholic by the time that Lockdown was over.

Being Autistic means I have alot of sensory issues around food, while my far from ideal home life means I can’t make a constructive psychological routine around eating, especially when I have to eat either standing up in the kitchen or sitting on the sofa, resulting in both of these being associated with food. I was on birth control drugs for years that are known to put weight on, along with beta blocking drugs to counter Anxiety, also notorious for weight gain. I hate feeling hungry all the time and always being on the look out for food. I have average portion sizes but rarely feel satisfied. I have bent over backwards with calorie counting, food diaries and appetite suppressants, and gruelling workouts in the gym. I was doing 3 classes per session, with a warm up beforehand, but there was never any evidence on my body to show for my hard work. It seems like anything I consume just adds to the inches around my girth.

Mental health and lack of help meant I had to resort to any coping mechanism I could find, so I turned to food and especially to drink. I’m constantly changing my diet. Trying new things. Stopping eating this and eating that instead, but the motivation never lasts. The next wave of Mental health hell rolls in and it’s back to square one. Willpower alone is no match for Anxiety, Depression and Trauma.

There is also the guilt. Did my eating and drinking cause this Cancer? Is it because of my unhealthy lifestyle? I’ve tried starving myself. I’ve tried deliberately making myself sick. And neither worked. I always went crawling back to food and drink in order to get through my waking hours with some semblance of joy. The only way I have ever successfully lost weight is through being so ill and anxious that I couldn’t keep food down for weeks, and keeping the weight off then never lasted longer than a year.

And then there is the economic barrier. In Post Brexit, Post Pandemic Britain, fewer and fewer enjoyments in life are in reach for people in poverty. As are fewer and fewer healthy eating options. Noom and Slimming World don’t work in conjunction with the Food Banks. We are being told to do away with our gym subscriptions and “avocado on toast” so we can save up to buy a place to live. Junk food is cheap. Junk food is quick. Junk food is less hassle and less time consuming for people run ragged by jobs, chores, kids, stress. They never mention anything like this in the endless diet ads on TV.

It all seems like little money, little energy, poor mental health and now poor physical health is going to work together to stand between me and any chance I have of getting thin.

Getting dressed of a morning is filled with intrusive thoughts of “can I still wear that?” “do these still fit me?” or “like hell can I get away with wearing THAT when I look like THIS.” I remember the words of my Mum telling me to “flatter my figure”, which in my beyond broken brain is code for “wear something that hides how you really look”. I don’t have a figure. I have an abomination that needs clothes to hide under. So where are the clothes that fit?? Being stuck wearing clothes that either ride up or roll down is a sensory nightmare in itself, let alone a kick in the confidence every time I get dressed for the day. I have a choice between shapeless sacks of fabric or outfits tailored to skinny people then just scaled up in size. Body shape and comfort has been merely an afterthought. I love my goth clothes, but finding outfits I can get away with wearing is a neverending struggle. The fashion industry rarely considers the wants of bigger women because they don’t want to convey the idea that they are promoting obesity, while encouraging weight loss by providing fewer and fewer nice looking clothes that fit so we feel worse about how we look.. Ergo we will force ourselves to lose weight. The goth fashion industry isn’t much better. Some companies don’t make clothes over a size 16, and even then their idea of a 16 doesn’t fit reality. Once again I would like to shout out to the likes of Killstar, EMP, Disturbia, Attitude and Banned and all the goth labels I wear to PLEASE do more to represent us, we big and disabled girls who want nothing more than to be able to dress for our chosen identity, and unfortunately endless 1950s style dresses isn’t the answer either.

One glance in a mirror and I am instantly full of shame. Full of guilt. Full of hate. And all of this is just how I am now. Pre Surgery. Pre Bag.

I have begged to my Dietician in Pre-Hab. I’m desperate to lose weight. I’m desperate to be thin. I don’t want to be Fat and have a Stoma. I don’t want to be consumed by the Type 2 “It’s All Your Own Fault” Diabetes that I can see on the horizon. How am I going to manage when I was so dependent on the Gym and now have no intensive exercise options to fall back on? I want my surgery and rehabilitation to push me to lose weight, but I have read about the weight gain that having a Stoma will cause. And I know that rehab and therapy is up against my mental health conditions that are now 30 years strong. I feel like I am caught in the middle of a losing battle. I want this to be where I learn how to associate food and drink with being fuel for health and nutrition and not a distraction from sadness and fear. That I find better coping strategies that don’t involve food and drink. That my every waking minute doesn’t revolve around when the next meal is. That I just stop feeling constantly hungry or my mouth stops feeling constantly bored. To maybe even go into a job as a fitness instructor who has goth gym wear and teaches HIIT to heavy metal has been a thought sometimes. That would be nice, but as with everything I look towards in my life, is it even possible? Not right now.

What am I to do when I am told I have a problem for every solution?

The surgeons are more than welcome to chop out any fat they see when they come to chop my Cancer out.