Tag: Cancer

Dear God, Dear Goddess.

Christo-Paganism in a nutshell, more or less

I had only just begun to Re-acknowledge my religious following. It was barely a few months before my cancer diagnosis blew it out of the water. It has taken me years, years where I have suffered, to figure out the right spiritual path for myself but now I feel I have been spiritually estranged, and I don’t know how to regain my sense of faith. I am also fearful that I should be looking for religious direction in order to prepare for my death, but that is leading me down a very frightening and very confused rabbit hole, where I am having to battle against contradiction, doubt and potential hostility.

At the height of Summer last year ((2021)) I reignited my interest in religion. It has been a long interest, gaining me my highest GCSE grade at A*, but had been mostly dormant for a good number of years. I just didn’t know where I could fit in spiritually. Was there any place for someone who believed in God, Ghosts and the power of Witchcraft, as well as the presence of multiple aspects of power/gods and goddesses/deities in nature and beyond? I had approached the idea of following a joint Christian and Pagan path once before, while I was an UndergradStudent. I remember my parents scoffing the idea, calling it “design a religion” and then having a good laugh. I spent a long time afterward thinking it was a silly thing that only I was daft enough to consider. Then a fellow friend in my Goth Community and Diversity Community mentioned in passing that their faith was “Christo-Pagan”. At last, it wasn’t just me.

What does it mean to be Christo-Pagan? It’s just a different way of practising Pantheism, the following of multiple aspects of power. It includes both Christian teachings and ideas and older Pagan ones too. It’s not a modern creation, either. Many cultures blended early Christianity with their own longstanding Pagan practises and beliefs. They, like me, did not want to replace one with another but find harmony with both.

Constantine was concerned about this new religion, Christianity, unsettling his pagan subjects, thus incorporating it INTO the pagan religions, so Early Christianity never converted the pagans, it was absorbed INTO paganism

From Quora, “What is Christo-Paganism? “

Hence why so many Christian Holidays on the calendar coincide with Pagan Festivals, such as Christmas = Yule, Easter = Eostre, and so on. Those multiple gods and goddesses often became renamed as saints or as angelic figures (for instance, the Irish Goddess Brighid became St. Bridget..) Those old pagan cultures of our history were not forced to abandon their traditional followings until generations later with the dominance of the Roman Catholic Church across Europe. Like those cultures, I cannot abandon one following to serve another. There is space in my soul for both. We live in a far more individualistic society in the 21st century where religion is very much a personal choice as well as a deeply personal experience, not the mass conformity it was in the past. We also live in a society that can decide for itself what aspects of religion to retain and what should be left in the past. Writings from 2000 years ago cannot reflect all of what we are now, as we, and the world, are ever-changing. In these modern times, Religious organisations are beginning to open up more to diversity; to gay people, trans people, women, people of colour, disabled people. Surely the next logical step is to acknowledge multi-faith followings. Religion can adapt to change, and history has shown us where it can.

On a personal level, God and the Goddess to me are like Spiritual Parents. They are the aspects of the Divine Masculine and Divine Feminine, Sun and Moon, etc. It also comes of a desire to acknowledge all of my heritage as a person of the British Isles, a place and culture as much steeped in shadowy spirits, fae folk and black dogs as it is in church bells, hymns and prayer, and of course beautiful representations of Christianity through art and architecture. This is only a very basic glance over what I believe in, and I don’t expect this to make sense to anyone else. This is just what works for me, and is for the purpose of doing good for myself and for others. That is, after all, the core message of all religions. As for “design a religion” as my parents called it, isn’t that how all Religious practice is created? Regardless of whether it was two years ago or two thousand years ago.

I have a Bible and a Book of Shadows next to each other on my shelf. I created a working Altar, displaying both Pagan and Christian symbols.

Religious Study with the Grimoire in the Park last Summer
My Altar, dressed for New Year-Imbolc

There’s room for both God and Goddess in my following, and equal representation. My religious study involves searching for truth, guidance and meaning from both sources. My own personal Grimoire has as many prayers and bible passages as it has spells and rituals, along with more modern approaches like Affirmations and Mindfulness skills. This is as much about self care and therapy as it is about worship. Along with my Grimoire writing, religious research and starting up sabbat rituals again, I began re-attending Church in the August, at the beautiful St John’s in the heart of Cardiff. I was not only beginning to accept and understand what my following was and where it came from, but I was beginning to find a way I could actually practise it and make it part of my life. Then along the Autumn. Along came Cancer.

During the process of the initial investigation, and the first surgery, I found myself leaning heavily on both sides of my faith. I was open to and appreciative of all thoughts and prayers, all offers of Spells and rituals. And I did my own, too. I dug out my Crystals and put my Crystal Therapy Qualification to some practical use. I set up Spells at my Altar. I versed silent prayers as well as writing them, sealing them away in Jars or burning them in candles. As I lay inside the MRI scanner and on the Theatre Table waiting for the Anaesthetic to knock me out, I silently recited the Lords Prayer over and over again. It was the last thing I remember doing before I woke up.

The final outcome, after all I had done screaming to the divine for help, left me reeling. And left me questioning. How could God, the Goddess, and all of their associated deities or demi deities or saints, angels, whoever.. Let this happen to me? I had begged. Others had begged. What had I done to deserve this judgment? What had I not done? Had I asked for help in the wrong way? Or is my very direction the wrong one??

I feel like I have only just got to know God again and now I already have to repair my relationship with Him. I feel deserted. Abandoned. I haven’t yet gained the courage to show my face in my church yet, even though they are “rooting” for me. I’m not even sure why. Maybe it’s because I am lost on what I now want to ask of God, when I feel like what I have asked for has maybe fallen on deaf ears. Or maybe saving me from death or from a life of discomfort is too much to ask. And that goes for The Goddess too. I did the Spells. I was meticulous not to botch them. And like the prayers, they didn’t work either. Where did I go wrong? I haven’t tried any Spells since. I was even left questioning my Crystal Therapy, which has a basis with Science through the Kinetic Theory, and why that had done little to avert the pain or alleviate the physical or the mental symptoms of my condition.

Post diagnosis and Pre Op I feel like I have been cast spiritually adrift. I am looking for both guidance for the situation and its consequential effects on my mental health from both the Bible and any Pagan and Witchcraft sources which, despite the sheer volume of what is out there, is still hard to come by for this situation. I have prayers from my Church and some wonderful support from our Reverend Sarah, but I am afraid that discovering I also have a Pagan Path will lead to hostility towards me. While I can find Bible verses to provide a little comfort, how do Pagans face Cancer? Witchcraft in real life isnt like fairytales, you can’t concoct a cure out of candles and herbs. I didn’t know that I could ask for religious requirements in hospital. When I filled in the paperwork I said I didn’t have any such requirements, as I didn’t believe that my hospital could provide for such an avant-garde following as mine. Do Pagans even have a representative in hospitals? And what would the Hospital’s Christian Chaplain think of me if they saw I also give half of my faith to Paganism? Would they refuse to see me? Are they even allowed into my ward because of the still-in-place Covid rules? Or are there exceptions on religious grounds? Either way I suppose I would prefer the presence of the religious leader I know rather than be met with a stranger who risks making my anxiety fire itself up.

I didn’t know that I could ask for religious requirements in hospital. When I filled in the paperwork I said I didn’t have any such requirements, as I didn’t believe that my hospital could provide for such an avant-garde following as mine. Do Pagans even have a representative in hospitals? And what would the Hospital’s Christian Chaplain think of me if they saw I also give half of my faith to Paganism? Would they refuse to see me? Are they even allowed into my ward because of the still-in-place Covid rules? Or are there exceptions on religious grounds? Either way I suppose I would prefer the presence of the religious leader I know rather than be met with a stranger who risks making my anxiety fire itself up.

What is going to happen if I die from this? Am I going to be judged accordingly? I have never been able to forget the “God Fearing” approach I grew up with. I respect all faiths and all directions even though I don’t personally follow them since surely, at least one of them is right? Apart from Scientology of course. That stuff is batshit crazy. I don’t know what heaven or hell is, even though I did grow up with the Fire and Brimstone vs Clouds and Harps imagery. Outdated I know, but it still sits there in my quiet subconscious. Death is scary as I imagine it could be as much like being put on trial for the faults I have made in life as it could be just ceasing to exist and disappearing into forever blackness. As someone desperate to do good but always finding myself being interpreted as the complete opposite, I don’t think there will be much of a case for my defence. I have to hope ((and pray!!)) that God and the Goddess understand Autism better than most humans.

I am not forgetting Science, of course. It is simply that this post isn’t about that. Science is very much the religion of today. That and Veganism. There is only so far I can go with either side of my faith before my brain starts telling me I am stupid and I should listen to science and science only, and accept that there is nothing beyond ceasing to exist. But of course that comes with its own special can of Anxiety worms. Science and technology in medicine could very well save my life, but it hasn’t proven itself yet, anymore than my spiritual followings have. A more science appreciative based post will have to be written at some other, later date.

I am hoping I haven’t lost my faith. Again. I am hoping it is out there somewhere and I can re-grasp it despite feeling like it has utterly failed me. I hope those feelings dissolve over time and I can find other ways to get around my God/Goddess conundrum. I am still decorating my Altar for the Ostara-Easter-Beltane Season, and putting out a few symbols for those poor people of Ukraine. Its not all lost, but it is going to be a challenge to Re establish it in my life, or whatever life I have left.

Dear God and Dead Goddess, Father and Mother. Grant me the strength to live through this and to live long beyond. Grant me protection against pain, discomfort and suffering, and The guidance to return to you both. Blessed Be, Amen.

The Romantic Wasting Disease

Cancer, Colostomy and my Goth Identity

R. Cooper, 1912 Wellcome Collection

I have an identity that is surrounded by elements and ideas that deal in darkness and death. How is it possible that I can continue with my following of Goth culture now that I have been dealt my own, chillingly personal, taste of real mortality? I honestly don’t know. I am not Kurona the Goth anymore. I am Kurona with Cancer. Kurona with a Colostomy. My diagnosis has robbed me of my identity.

Its easy to think of Goth as a subculture dominated by a music genre and a fashion following. So why would my diagnosis interfere so much with that? Because for me, it is something that goes far deeper than simply wearing black and listening to loud music. During my time studying cultural history, I have discovered the roots of Goth culture go back far further than a music based revolution of the 1970s and 80s, all the way back to the latter years of the 1700s, and the beginnings of the Romantic Movement, and of the Gothic Revival. It was a cultural explosion born of the French Revolution, caused by a desire to reject the cold, hard science of the Age of Enlightenment and to rediscover and embrace a love of the past, for the beauty of the picturesque and the mystery and magic of the sublime, and the allure of darkness and beyond. It covered all corners of Art, Literature and Architecture, and spilled into the veins of the Romantic Movements of the 19th Century. The wave ran throughout the 1800s and crashed after the First World War, it was abused by the Nazis during the Second World War, it found a hiding place in The realms of Middle Earth, Narnia and Gormenghast, ridiculed by the modernists of the 50s and 60s, until it was reborn through the music and alternative art movements of the 1970s and 80s.

In those times, death was a constant presence in the outside world, not hushed up and hidden away like it is now, despite our stereotypes of Victorian prudishness. It was loud and it was vivid and it had its own place and belonging in Art. 19th Century Gothic is filled with references to death. In fact, an entire culture all of its own sprang up around it. From ideals of “the good death” to burial customs, a “Cult of Mourning”, Cemetery Architecture all of its own with its own unique messages and symbolisms, to Memento Mori Photography and Keepsakes of departed loved ones, to whispers of ghostly activity, séances and contact from the “beyond”. A long, slow, “romantic” idea of death and of mourning dominated art and literature and fashion.

Ophelia. Elizabeth Siddal’s 12 hour pose in a bathtub of cold water for John Everett Millais’ painting affected her health and contributed to her early death

Its easy to imagine a sick gothic maiden of 19th Century Art and Literature. Perhaps even beautiful to imagine her. It’s anything but beautiful to BE her. I am not reading this story, I am living it. Conjuring the mental images of reclining into a chaise longe, falls of untamed pre raphaelite hair and flowing pseudo-medieval gown, a pale face with a heated tint of rose, coughing blood into a hankerchief, regretting the opium heavy lifestyle and the mortal pricetag that it carried.. That is no challenge for me. I could easily invent that character as much as re enact her. she is ready to die the good Victorian death and be loved and remembered by all, forever.

But is that going to happen to me in my reality, in the modern world? I think not. The reality of dying with Cancer is ugly, messy and terrifying, far removed from the Victorian ideal associated with a long and drawn out wasting disease. Plus I highly doubt a life trapped in the benefits system is going to grant me the Gothic funeral or gravestone I want.

While my identity is not limited to the music I listen to or the clothes I wear, they still feature very heavily in my expressing of it. My fashion following ideally is something of a Medieval/Victorian hybrid, with a little Industrial and Cyber for good measure. Though it is difficult to find gothic clothing that both caters to my size, shape and sensory comfort, let alone poor budget, so ordinary days are often spent wearing very ordinary clothes, just with a strict gothic colour scheme of black with a hint of maybe purple or red or teal. I don’t tend to go crazy on makeup much either, no chalk white cheeks here. Just a little black lippy will do just fine. My music taste is far removed from the likes of Siouxsie or The Damned, favouring more Symphonic Metal and Dark Ambient, Neo Medieval, Viking and Industrial/EBM.

My 34th Birthday in 2019
Cybergoth-ing at my regular Industrial Club, pre Covid
Sabaton in Wembley Arena, Feb 2020
Dead Space Chamber Music at St John On-The-Wall, Bristol, January 2020

My interpretation of Goth having been born of the Gothic Revival influences the books I read. And those I write. The Art I produce. The places I go to in search of inspiration and peace. The way in which I decorate my personal space. Even the mental “safe space” I am being trained to create is itself a gothic edifice. I love the darkness of nighttime, as darkness seems to possess so much more truth. I love the Art and symbolism found in Cemeteries, Churches and Graveyards. They’re peaceful, beautiful places far removed from the chaos and noise of the living world, As well as losing myself in the perfect atmosphere for althe kind of chilling tales I revel in. I love Autumn and I am a bonefide Halloween Queen. I love broken things and abandoned places. I listen to stories of true hauntings, true crime and unsolved mysteries to go to sleep. It is the heart within my heart. And Cancer has broken it.

I’m in love with the darkness of the night

I’m in love with all that’s out of sight

I’m in love with the magic of the moon

And the darkness loves me, too

Xandria, “In love With The Darkness”.

There is more to be said for embracing darkness and shadows. Something that goes beyond even literature and art and finding inspiration. It gives me somewhere to hide. I have CPTSD. I have failed to get anywhere further than square one for my entire adult life. It has been a ride of constant struggles, illness, conflict and hitting brick walls and dead ends. Life seems to want to show me lovely things, then take them away again. What are you to do when you feel that life doesn’t want you? You embrace Death. I became Goth because I am grieving for a life I couldn’t have. I embraced Goth as a trauma response as much as an inspirational calling from the night. I am Goth because I am angry, with myself for failing at life and at life for failing me. There have been many times where I have seen Death as the only alternative to living through what I was experiencing. I feel for the things and people and places that have been broken and abandoned and forgotten, because I have been there too. But now I have Cancer, and Cancer could kill me. Everything has changed. Where I once chased beauty in darkness, where I had surrounded myself in beautiful associations with death, they aren’t so beautiful anymore. They make me feel sick.

Is it a prerequisite of being Goth to love death? If so, I will have to count myself out. I feel I am on the verge of abandoning my following of Goth altogether. when faced with my actual mortality all references to death, to horror, to all those things that once filled me with inspiration now make me feel sick and frightened. The music i once loved now triggers me, and the thoughts of permanent, inescapable darkness, stirred up by cemeteries, skulls and coffins fill me with dread instead of inspiration. I feel like a hypocrite, a contradiction. One half of me wants to be healthy and prolong life for as long as possible and has an irrational fear of just ceasing to exist, while the other half has had enough, too exhausted to fight anymore and just desperate for it all to be over with. I can even say I hate being alive because I am being forced to endure death. That long, drawn out, slow death so often depicted in the Gothic Art and Literature that I love is what I truly fear the most. Far more than my fear of falling out the sky in a plane crash, getting mangled by a car or just suddenly dropping dead in the middle of watching the TV. I had long hoped that it would be quick, painless and doing something I loved.. maybe a bizarre urbexing accident. I don’t want a finite amount of days where I can count them down with acute awareness, where every minute I will be desperately seeking pleasure, desperately making the most of what I experience for the final time, and hanging on to any scrap of hope but knowing all too well that it is too late. Can I even call myself Goth when I am clinging this tightly onto life? Was I ever truly Goth? Or just a fucking joke?

Should I be lucky enough to survive this, Am I going to owe life some kind of debt for my second chance? Perhaps paid for in abandoning Ghosts and graveyards and embracing sunshine and butterflies? Will I ever feel comfortable again, let alone comforted, drifting through graveyards and ruins?

And should I somehow survive this Cancer and this surgery and hold on to my Goth identity through this, how am I going to live as a Goth with a permanent Colostomy.. A Gothstomate? How will I be able to wear goth clothes with a Stoma and a bag full of poo to accommodate? I don’t know how I will be able to show my face in my clubs or at my concerts without the fear that I am being constantly looked at and judged, knowing what gross things are going on under my clothes. I don’t know anyone in my Goth Community with a Stoma that I can reach out to, to ask how they cope, how they can wear their clothes and go to their clubs without feeling like they stand out with their disability. In fact I don’t know any Goths with Stomas at all. I feel utterly isolated.

I have caught myself daring to dream of one day perhaps being able to model Goth fashion as plus size and disabled, be a representative for Ostomates in the Goth Community, as so far I just haven’t seen any to help me feel less alone, to give me any confidence that I can carry on wearing my signature style, that I can continue to identify as Goth. But that may only come from surviving cancer first.

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.

The vicious cycle..

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.

The Horror Stories

DISCLAIMER/APOLOGIA. If you are an Ostomate, a Cancer Fighter or are close to one, this post will likely make you angry with me, so please don’t read. The last thing I want is to anger, upset or hurt my new community. If you have been newly diagnosed, like me, I wouldn’t advise you don’t read either, because the last thing I want is for anyone to go through the same experience as I am recording here. My only advice to you at this stage – to avoid ending up having to write crap like this – is don’t join any social media support groups or start researching your diagnosis until you are past the grief stage and have regained your inner strength. If you do read, please be aware that this is written from a perspective that came within the first few days after diagnosis, the last few days of January 2022, The stories are 100% real, and an honest interpretation by my already very damaged self. These thoughts came well before I met some of the wonderful people in the Ostomate and Cancer Communities, who went on to reassure me that I was just very unlucky coming across some of the worst extremes of the world of serious ill health. I will get to writing about all of you, if you are still reading.I want to be able to look at this in a year’s time and be like “WTF was I thinking?” with a massive smile on my face, but at this stage, that remains to be seen.I also feel that I have to make a reminder from my first post here.. If you are upset by this, please don’t take it out on me. After all, I am fighting Cancer and writing has been part of my prescription. I will get round to writing more positive posts but this has to come out first. The last thing I need right now is being hated on. If you are upset, just remember this. I have the sincerest respect for you all, and whatever ways you have to help you through your battle. This is just how I am fighting mine. that and I am so very, very sorry.

~Kurona

I need to write this to get it out of my head, as I feel I am constantly aggravating the Ostomate and Cancer Communities with the same questions, the same fears, the same fatalist rhetoric. Trigger warning.. Its going to be a mix of graphic medical descriptions and self pitying, Woe-is-fucking-Me warble. Oh and much bad language because I am actually so Utterly. Fucking. Furious.

After the original diagnosis back in the Autumn, I was advised to join support groups on social media. At that time, it was probably the worst thing I could have done. Instead of providing relief, it exposed me to the absolute worst case scenarios of both life with Cancer and life as an Ostomate. And seeing those horror stories on top of the overflowing mental crisis I was already contending with was a volcanic explosion waiting to happen. I did have some positive things come from joining the groups, but that requires its own post. I would advise not joining support groups until the initial darkness of diagnosis – plus shock plus grief plus the mental nuclear fallout – has significantly subsided.

Being in the desperate situation I was, I took any advice that was offered. I went online and I joined the Groups, but also put my academic skills to use and went online to also research what I could about Colorectal Cancer and Ostomies. I came away more terrified than informed. Articles pointed out just the same and in some cases even worse outcomes than the support groups did. Dear Auntie Google even pulled up an article stating the significant loss of quality of life that I was facing as an Ostomate:

Thanks for the encouragement, Google!!

I read articles listing colostomy problems in great and graphic detail, and just how humiliating and messy they are, especially for someone who hasn’t known much of a life beyond being constantly pointed and laughed at.

What I have learned from the groups and articles is nothing short of nightmare fuel.

POONAMI. When it’s got to go, it’s got to go. It won’t matter where you are or what you are doing. It will be on the bus, on a train, in a car, in a restaurant. In the shops. At a gig. In the middle of the fucking street. I’m going to leak. My Stoma Nurse told me that bag changes or emptying will happen once to three times a day. But that is for people with relatively normal bowel behaviour. I have IBS and Anxiety, which come with regular diarrhoea and tummy upsets. From what I have read of people who actually live with these things, (unlike her!) the constant fight against accidents is forever going to be on my mind. I can see myself never leaving the toilet, setting up my bed in the bathtub. Even though I have been told time and time again that leaks rarely happen, every other post in the groups I have read have been very graphic descriptions of bags leaking. Of flush Stomas sitting like inward belly buttons and producing output that constantly misses the bag. Of bags filling up in one sitting and overflowing, never the right size to catch it all. Of “Pancaking”, where the output gets stuck in between the bag and the base plate that sticks to the skin, and either leaks out or causes the bag to fall off. Of “blowouts” and “explosions” and going all over clothes and bathroom floors and even walls, about having to lean over the sink to catch the eruption. Of hours spent in the shower for it all to happen all over again. Of days spent in tears and mess. They even have a word they use when talking about these leaks and pancakes and blowouts and explosions. They called it a “Poonami”.

Poonami??

If all of this is happening with just normal poo, what the hell is it going to be like having IBS and Anxiety and the diarrhoea that comes with it? Oh and the big one.. Having Belly Flu. Having Food Poisoning. I can’t even bear to imagine, but my brain will do it anyway. The impression that has been so deeply carved into me is that I am going to be slave to something that behaves any which way it wants, and I will constantly have to be ready for the next revolting disaster. There won’t be any way of controlling it. Or stopping it. Or even knowing until its too late. I will never want to leave my flat or be seen in public again.

I AM NEVER GOING TO GET ANY SLEEP. Many of the horror stories about leaks describe it happening at night. It happens so often at night I doubt I am ever going to sleep a full night again. The horror stories have told me about getting up three, four, five times a night to empty a bag. Not being able to lie comfortably because of Stoma pain, or rolling over onto a full bag and POP! Waking up in a puddle of poo. There were posts about having to lie on Puppy Pads to catch leaks. Line the mattress with a plastic incontinence sheet which crackles when you move. All those memories of being a kid wetting the bed have come flooding back. I will forever live in fear of bedtime.

EVERYONE IS STARING AT YOU AND LAUGHING. I spent most of my childhood being told that I draw negative attention. That I set myself up to be laughed at with what I said and how I behaved. And there’s nothing like a good old loud, wet fart to get people pointing and giggling. If there was even the quietest fart-like noise in the classroom, the kids used to shout out that it was me. Now it’s going to be for real and uncontrollable. Unstoppable. I’m going to be noisy. According to an article I read on a site called “The Patient’s Lounge”

Gas passing through the Stoma is hardly ever silent… It can be acutely noisy…loud enough to attract anyone in earshot

The Patient’s Lounge

To counter it, the article suggests giving up all sorts of food and drink in order to get just a minor sense of control back. It means no more spicy food. Most of the contents of my freezer are home made Curries. No more fizzy drinks means no more Prosecco. No more Gin and Tonic. No more rich food or drink like red meat or red wine. If I have to give all of that up, I will stuff my bloody Stoma in and rip myself a new one. As well as making noise, gas causes Ballooning. It fills the bag up so that it sticks out of clothes, making itself very visible and it’s presence very known. Its going to get everyone’s attention. And then of course.. The smell when the bag has to be “burped” like a gassy, sicky baby.

Courtesy of Bags of Calm

VI-POO. I am going to smell. Gas smells. Leaks smell. I’ve read how Ostomates have to constantly carry Deodorant and something called “VIPoo” with them at all times. One complained about how they made their entire house smell. I live in a tiny flat. One even said that not being able to smell the bag was the first sign that they had Covid. I am going to have to get COVID to be free of the smell.

OFF THE MENU. I already have a difficult relationship with food and drink, courtesy of being a fat girl with Dysmorphia and mental health baggage that required whatever cheap and easy coping mechanism I can think of. To have any modicum of control over this unpredictable alien thing, I am going to have to give up so many foods and drinks I enjoy. Some like Onions and Garlic form the basis of most of my cooking. Some I even depend on because they are easy to obtain and are for now, affordable. It’s not like food banks can cater to medical dietary requirements. Beggars cannot be choosers. Food and drink is going to aggravate the Stoma and make passing output painful. It’s going to cause more output. More noise. Even less control. Even more risk of humiliating leaks and explosions and pancaking and ballooning and mess. Despite my Stoma Nurse telling me I can have a relatively normal diet, all the horror stories I have read have named virtually every food as a risk.

I am more inclined to listen to the people who actually have a Stoma and have had to navigate their life around them. I was so frightened of eating and drinking after my last surgery that I spent weeks barely eating anything, so that’s likely to happen again with the coming surgery. At least then I will lose weight, right? Haha. WRONG.

WEIGHT GAIN. The articles and posts say it all. Stomas cause weight gain, not loss. I don’t know how so many photos online show Ostomates as skinny, as this utterly contradicts the first hand accounts I have read. They must have their diets cut with military precision, and burn themselves to ashes in the gym. Or the vast majority of Ostomates are so shameful of how they look they won’t post any photos of themselves, and leave it to those who miraculously keep their bagged bodies looking healthy and gorgeous. Unfortunately I am more like the former.

HERNIA HELL. If these beautifully thin Ostomates really do run themselves ragged in the gym to maintain their figures, then how the hell do they not get hernias. These were again something that before my diagnosis I only associated with old people, a product of being in that stage of life where your health turns against you no matter how careful you are. I will barely have to move an inch to cause one, especially in the early days after surgery. Hernias are serious and painful and scary and often result in more time spent in the bloody hospital. Never mind intensive exercise, just bending over to pick something up or put socks on will cause one, unless I fork out money for an expensive specialist belt, that I will have to then live in day and night. I’ve got some wonderful mental images of my fat belly spilling out over the top and bulging from the bottom, only to end up with the fucking hernia anyway.

WEAR IT BAGGY TO FIT THE BAG. I read how some people have had to solve clothing discomfort by cutting holes in their clothes in order to fit the bag. And they don’t have a fat belly and sensory comfort issues to contend with. There is of course specialist-made Stoma wear, but like I’m ever going to afford that on government benefits. The horror stories dictate I won’t be able to wear any nice clothes anymore, let alone signature gothic clothes. Goth fashion is notorious for being tight fitted. Not only am I already too fat to wear most gothic clothes well these days, a bag on my waist is going to make that utterly impossible. Even the simplest jeans and t shirt will be a no-no. I read that jeans can be worn only if they sit like hipsters or high waists, neither of which I can get away with as a fat girl.

I read that jeans will need to sit under my belly. With my shape I’m going to look like this.. (sorry Meg!!)
I also read that jeans have to be high waisted. No chance there either..

So there will be no more jeans. No more tight fitting dresses. No more corsets. No more lingerie. I’m looking at spending the rest of my life in Bridget Jones Knickers, joggers and baggy T shirts.

IT’S GOING TO DESTROY MY SKIN. I’ve seen graphic photos of what constant use of the base plates and adhesives can do to skin. I have seen photos of rashes and sores, skin splitting and raw, allergic reactions even. This on top Stomas that produce so much output it makes them bleed. I won’t show any of the images I saw on here because of people’s individual privacy, but I will show it all in its graphic detail when it inevitably happens to me. I want you to see what I have to see.

I AM GOING TO HAVE TO CARRY SO. MUCH. STUFF. The amount of medical stuff I am going to have to have in grabbing distance is nothing short of intimidating. I’ve seen photos of it all, taking up entire tables. Bags. Wipes. Sprays. Disposables. Sticky things that I don’t even know the names of. A plethora of Drugs to stop this and counter that. And the fucking VI Poo. How am I going to remember how to use it all and what is meant for what? On top of this there will have to be spare clothes for the inevitable leaks and pancakes and blowouts and poonamis. I’m going to be carrying an entire outfit, with the bloody shoes and bag to match, everywhere with me. Every day. I might as well pack a fucking suitcase for a trip to the cornershop.

TRAVEL. On top of having all the medical supplies and x2 of every outfit and being on guard for the inevitable poonami when you’re miles from the nearest toilet, here come the stories of being humiliated at airport security. One first hand account recalled being forced by security to remove all their clothes in front of everyone because security believed they were using their bag to hide something. I probably won’t even make it that far anyway on account of just how expensive travel insurance will be for a chronic medical condition in Post-Brexit Britain, well beyond the reach of a person reliant on sick and disabled handouts. My photo shoots abroad will be consigned to history. So much for the bucket list. No more trips to remote, beautiful places. My days of adventure and finding peace in the wilderness are long gone.

THOSE WHO COULD NEVER ACCEPT IT. I have a horrible feeling I am going to be one of those people who will always be living in permanent conflict with their Stoma. They begrudgingly come to live with it because they have no choice, but it will never be their friend. It will always be a blot on their quality of life, getting in the way of their every waking.. And sleeping.. Moment. One that I read stated they had named their Stoma after an abusive ex, because

The Stoma is exactly like an abusive relationship. It shatters your confidence, robs you of your dignity, leaves you feeling totally repellant and you never know when it’s going to kick off.

Anon.

They went on to say they would always resent the Stoma for ruining their quality of life. Maybe Auntie Google was right all along.

After a while I stopped looking for posts and articles. I stopped searching, I stopped reading, I stopped posting myself. I opened the wine bottle and cried on Twitter. That was that. I was simply beyond frightened for my future health prospects. But the horror stories wouldn’t stop haunting me. I didn’t look for them but they kept finding me. I would be absentmindedly scrolling, looking for positive-thinking memes or some other mental health related fluff and then suddenly, there they were. It’s like bad news is somehow magnetically attracted to me, sticks and won’t go away.

What lies beyond these frightful glimpses of life in the Stomaverse come the brutal reminders that flash like garish lights being shone right in my eyes. That this is CANCER. and ITS GOING TO KILL ME. That my surgery won’t be a success, it won’t get all the cancer and I will be faced with months of Chemotherapy and the horrors that come from that. Hair loss. Chemo brain. Violent sickness. Endless fatigue. All the articles I have collected in preparation for this eventuality point towards miserable after effects and lasting damage. Even my closest friends tell me I won’t cope with the Chemo process, that it is something I will never want to have to go through. Even if they do get it all, the horror stories have shown how it can come back with a vengeance, and beyond the reaches of treatment. Even the best outcome where they get it all and I drift uneventfully into remission, I am still faced with five years of gruelling tests. Colonoscopies through the Stoma every three months. The awful Moviprep that utterly debilitated me last time will turn my Stoma into a something resembling a Yellowstone Geyser.

and lastly.. There are THE OBITUARIES. Colorectal Cancer is a killer. Its the second biggest killer after Lung cancer. I only have to idly scroll my feeds to see stories of Colorectal Cancer patients who didn’t make it. Even though my team said they’re going for a cure, even though neither my friends or family believe I am on death row, it’s still eating away at me that this can’t be cured. That there’s part of it that will escape. Or it will come back with no mercy. The social media groups are riddled with obituaries for those who lost their fight. They never once moaned. They loved life to the end. They were always smiling. They were always positive. Not like me then. I would rather have my eyes propped open with toothpicks and put in front of Cannibal Holocaust than be faced with something this terrifying, and then be expected to paint a smile on my face. World Cancer Day was the worst. I very nearly didn’t get my first blog post out because in the midst of writing it I was seeing post after post of those who didn’t make it. The one that really hit me was the photo of “Paula” (not her real name) on her wedding day. 29 days later she was dead. She was barely thirty years old. It was the same cancer as mine, and it had spread to her lungs and bones before she even knew it was there. I still don’t know what Stage my Cancer is. It could very easily have spread in the time between the original tests and now. I’m suspicious of every feeling of pain, every change in my body’s behaviour.

What hurts me the most however, is that amongst all these horror stories I am seeing so many people, both friends and strangers alike, living their best lives while mine is now thoroughly out of reach. And as guilty as I feel for it, I just can’t be happy for them right now. I can’t even relate to them anymore. Success is like a word in a foreign language, the meaning is utterly lost on me. Their posts make me boil with rage. Not at them of course, but at myself. For How I let my own life pass me by. And at my cancer, which has dashed any chance of experiencing those things in the future I have left.

So there it is. This is how what I have read and seen has painted a picture to me of my future.. Uncomfortable, messy, embarrassing and short. I feel like I need to prepare myself for the backlash from all the angry cancer sufferers and Ostomates out there who I just painted in an appalling light, but this is what I have read, how my brain processed it and I’m being honest in what I write, even when it exposes me for being just an utterly awful person. I have done my best to protect the anonymity of the people who’s posts and articles I have read and cited here, but if you see this and recognise yourself, please don’t sue me. I am too poor for court fees. And to all of those who have helped me and somehow are still reading my anxiety driven shite, this is written from the perspective I had before you stepped in. I haven’t written about you yet. I am grateful to you all so please bear with me. This had to come out first.

The Nuclear Fallout

One day, I might be able to tell the story of what I have overcome and how. But until then, this is the story of how I can barely cope with what is to come.

Even though I had long ago foreseen that I would eventually have Cancer, I never considered THIS CANCER. or THIS EARLY. Couldn’t I have at least got to the age of forty first? Why not one that was in a less embarrassing place? Colorectal Cancer is something that happens to old men. Colostomies are for the elderly. They lurk in the sleazy dark corners of life, unspoken, dirty, secret things that only crop up in crude humour like Cards Against Humanity and sly jokes about incontinence. Even an old sketch from BBC’s “Dead Ringers” has repeated over and over in my head:

Well, I had a bit of trouble capturing the water, but I’ve adjusted my colostomy bag and it’s fine now..

Watercolour Challenge Sketch, Dead Ringers, BBC1

After all, there’s nothing like a little snickering about someone who can’t control their toileting.
I lost my childhood to Bullying. I lost my Twenties to Mental Illness. To Abusive relationships. To Poverty. I couldn’t keep a job, let alone find a career. My original job saw me thrown out after five weeks and I still to this day don’t know why. My second job alongside my MA degree landed me with my first Mental Health Diagnosis and what turned out to be massive Burnout, from which I still haven’t recovered. No employer wanted someone with useless knowledge and no experience, let alone someone with Mental baggage and behaviour that looked brattish, over dramatic and self centred. Now I’m losing my Thirties to Cancer, and the real chance I won’t even make it to my Forties.

I instantly felt old. Like 2 thirds of my life had suddenly dissolved into history, wasted and irretrievable, and the last third brutally visible and finite; dominated by hospital appointments, tests, further diagnoses and further treatment, languishing in bed and in pain instead of going out there to make the most of whatever is left of myself.

I saw my whole life as if I had already lived it.. And the inertia of my life, plunging ahead and me, powerless to stop it. “

Rose DeWitt Bukater, Titanic (1997)

How am I ever going to progress from this? I don’t know anyone with this that I can relate to, let alone anyone who is goth, or female, or as fat as me. How am I supposed to tackle this on top of all my existing conditions? Isn’t severe Anxiety and Depression, Autism and Complex PTSD enough already? What about my dignity? What about what’s left of my self worth and self confidence? My coping mechanisms that are utterly dependent on food and drink? My sensory issues that mean I can barely tolerate tags in clothes? The prospect of facing a life of being constantly dirty, smelly, incontinent, uncomfortable, paranoid and utterly humiliated? How am I ever going to show my face anywhere again, constantly aware of people feigning sympathy while quietly sneering at my disgusting disability? I wam never going to leave my flat again. How am I going to live in a society that is already angry with me for being mentally defective and unproductive and now having a taboo physical health condition on top? How am I going to live with this? Am I even going to live at all?

Everything running through my head was how a Stoma was going to ruin my life, and even darker, how it wasn’t even going to be worth it because the cancer was going to kill me anyway. My life was going to be measured in months, not years. Having my entire GP surgery saying how they were all in shock at the diagnosis didn’t exactly fill me with confidence either. After the diagnosis, the Stoma Nurse had given me a Colostomy Starter Pack to practise with and get an idea of what a Stoma and a bag was going to feel like. I was instantaneously repulsed. It made a horrible crinkling sound like a crisp packet was shoved down my Knickers. It looked and felt just so intimidating and medical. And it fell off. The practise Stoma lost its stick and fell off. The bag filled up with water when I tried practising with it in the shower, and it too fell off. I couldn’t find the gel that was supposed to mimic poo ((oh, I now have to call it “Output”.. My bad)) so I first tried with water, which leaked everywhere. Then with rice, which made it fall off yet again. If I can’t even manage the practise ones, how am I ever going to cope with the real thing in less than a few months time, forever.

Trying the practise Stoma bag. I looked and felt vile.

I didn’t feel safe anywhere, not even in my own body. The inside of me felt contaminated, and I wanted to tear myself open and escape. I don’t want it taking me down with it. I felt guilty. I felt like I deserved it. Like I had put it there with my bad attitude and bad choices and bad temper and bad habits. And once again the Bullies had been proved right. I was the one in the wrong, the one that needed teaching a lesson, the one that deserved all these kicks in the head year after year instead of progression or success. I wasn’t good enough for that. I hadn’t worked hard enough. didn’t deserve it. A problem instead of a person. And I felt stupid. Stupid for all those months spent terrified and hiding from Covid when I had Cancer the whole time.

I thought of those who had been so cruel over the years and would actually celebrate in my death. We told the kids not to tell their Mum and her new partner about my diagnosis because they would be delighted that I had finally got my comeuppance. Those that had said they wanted me to die from Covid. Said that I was beyond help. Those who called me a home wrecker. A man eater. A gold digger. A leech. Those who hate me for the inappropriateness of the things I love and how I express my fascination. Those who find me an endurance test, those who I physically and mentally drain of energy. Those who believe I am an abuser or I am manipulative and play games with their lives. And of course the government and society who see me as a drain on their resources and a miserable statistic that would be better off gone.

The things I love now brought me no joy. The things that had once been so special to me and had brought me comfort like my pretty things and sensory things and favourite clothes and foods and makeup and jewellery. What was the point in them anymore? It’s not like I could take anything with me into that darkness of non-existence, cold under the ground. The things I enjoyed doing the most all faded to nothing. My history studies. My specialist subjects like the Titanic and Chernobyl and Crystal Therapy. My religion that I had not long rediscovered. Watching true crime Documentaries or quiz shows or horror movies. Photography made me feel particularly sick, as did any of my associations with the goth culture I had made myself home in for so many years. My whole identity had been eroded, and that impact warrants its own post. Many of my beloved things even became triggers. I still can’t listen to music as it reminds me of better times that I will never experience anymore, or become associated with this darkest point in my life. Even my Cats became difficult to be around, with my knowing full well that if I end up having Chemotherapy in the future I may have to Re home them all as they can affect the treatment.

Nothing mattered anymore. I started on the self deprecation jokes. I always knew some a*hole would try and kill me, never expected it to be my own. I’m done looking for life goals, now I should start thinking if afterlife goals. What do I want to be when I’m dead? Maybe become a Poltergeist and smash the crockery in No. 10 Downing Street. Sounds like a fun career move.

Pulling jokes could only go so far. My self care went to pieces. And the self harm started. I couldn’t eat. I couldn’t face food. And then I was so ravenously hungry that I didn’t care what I ate or how much. During the first Lockdown for Covid I became borderline alcoholic due to being unable to adapt, and that crutch was once again the only thing propping me up where my friends and family couldn’t reach. I stood in my destroyed kitchen drinking wine at 10am. I would sit and stare. Or stand and stare. Nothing got done unless it involved drinking to dissolve the thoughts and numb the feelings.

Wherever I had to go I broke down. I had to go to the GP for a routine blood test and I broke down there. Had to get David out of work to come and pick me up and I had to be given an emergency GP appointment because I went straight into a panic attack. I broke down in front of the local council campaigners when they knocked on my door with their leaflets. I couldn’t bear to be awake but I also couldn’t sleep. The nightmares and the morning Anxiety attacks were intolerable. I wrote to the Colostomy UK Facebook Group that I wanted to cancel the surgery because I couldn’t go through with it.

About as much as I could face eating..
It can fit a whole bottle.
Kitchen chaos as I failed to keep on top of the chores

When I finally kicked myself out of the flat to try and go for a walk, I walked miles with Wine in my water bottle and all my mental health meds in my purse. I wanted to go to Cathays cemetery or Llandaff cathedral graveyard, but somehow I ended up at the blackweir bridge. It was freezing and desolate despite the presence of cyclists and dog walkers and joggers. I didn’t take the pills this time. I thought of my surgery team and the effort they were making to try and save me. I felt I was throwing their care and commitment back in their faces, the epitome of all those accusations of selfishness and ingratitude over the years. I felt abhorrent.

In the end I had to give in. I knew I couldn’t look after myself, especially when David started his new job and I had to face hours completely on my own. I couldn’t make decisions by myself. I couldn’t function. I couldn’t cope. The last thing I wanted for David was for him to lose his new job because I couldn’t hack it on my own. So I bought a train ticket and ran away, back to my parents and the place where I was born.

I felt awful for dumping myself on my parents. Yet again I come home with my tail between my legs because I have utterly failed to live in the outside world. Just a frightened, helpless kid in an adult’s – now failing – body. They had to do all the psychological heavy lifting. Help me to eat properly again. Cut down drinking. Keep on top of hygiene and the simplest self care. They took me out places so I wouldn’t languish in my bedroom. They had me get into some TV dramas – Chloe and The Killing and Peaky Blinders – to distract me from my brain. They even paid for me to get my hair cut and re-coloured so I would look and feel just a little less of a wreck. And they have had to tough their way through all of my breakdowns, constantly repeating over and over again the same things that my head refuses to digest. That I’m not on death row. That I’ve not been condemned. That I’m not going to be a messy embarrassment.

Just after having my hair done. I am still asking this question.

The surgery team, Mr Ansell and Angel, said the chances of the cancer still being there after the surgery were small. But the chances of it being this form of Cancer were also small, so I just don’t believe anyone anymore. And the horror stories I have since been exposed to of living with cancer, of life as an Ostomate.. Well, they will have to be given a post all of their own.

I was supposed to have been turning my life around. I was meant to be blogging about my travel adventures and photography. But instead I am blogging about Cancer and a life with a prosthetic bowel.

The Diagnosis.. Continued

I instantly lapped up all the feelings of euphoria that came with the outcome of the tests and Scans. I remember being given a cup of tea and a biscuit in hospital, and I inhaled it. I had never before appreciated tea and a plain digestive as much as I did in that moment. We went straight to David’s Mum’s in Bridgend and bought a takeout for dinner. Again, I would never have dwelt so much on the significance of a pizza or slice of garlic bread or bottle of Tonic water, but nothing was more important than that moment and that taste and that feeling.

I had a good Autumn. The plans and arrangements I had been preparing before the diagnosis starting creeping back to the front of my mind. I made a Charcuterie board for Halloween. We went to London so I could do my annual Cemetery Photography trip. I barely thought about upcoming surgery, or about the small chance that this growth, this polyp, could still ruin my life.

We didn’t go hungry on Halloween..
Photographing Abney Park Cemetery, November 2021

I had been told during my Pre-Op appointment that if a certain grade of Cancer was discovered, I would need further, bigger, and life changing surgery. But given how none of the tests had detected anything, I believed wholeheartedly that it was the least likely case. I could have the Op, recover, and go about life like this whole vile experience had never happened.

I prepared for Christmas regardless of what I was going to go through. The concert we were due to go to at the start of December was wrecked by the Covid omicron panic so we went and got 2 new kittens, we travelled from one side of London to the other and back again to collect them before heading back to Wales, all in the space of 12 hours.

David riding home on the Tube with the new Kittens

The concern I had that at the time outweighed my impending surgery was that I was due for a PIP Assessment. My first one since claiming for my Mental Health Conditions and later for my Autism Spectrum Condition had resulted in the money being taken away and I lived year after year in fear of it happening again. The PIP Assessment was 2 days prior to the Surgery, and when the day rolled round I couldn’t go through with it. They wouldn’t let David speak for me and I was too frightened to speak for myself, lest they twist my words the way they had done in the past. So they wrote me off as “too ill to continue”.

Due to Covid regulations I had to go into the Hospital alone. I had done the Covid test and the three days isolation, and on the 2st December I left David sleeping and arrived at Ward A2 before 7am, I was given a bed and I waited. And waited. I answered some questions. And waited. Answered the same questions again for someone else. And waited. They gave me an Enema that was so hot and painful I thought it was going to come up through me and out of my mouth.. vomiting volcanic lava. I knew if I had the surgery before midday they would have sent me home and I wouldn’t have to stay overnight. But midday came and went. I started to feel cold and started to panic. I didn’t want to be left alone in there for a whole night as well as this endless waiting. I didn’t want to be put to sleep and not wake up again. I didn’t want so much damage from Surgery that I would have to live in nappies to catch leaks and incontinence. I hid under the blanket I had brought with me and bawled. The other ladies on the Ward even came over to try and reassure me, that I was going to make it back to my bed and not die on the theatre table. I prayed that because it was the Winter Solstice, the darkest day, that the surgery would mark the end of my period of darkness. Eventually they wheeled me away somewhere and fixed up my anaesthetic wires. I silently repeated the Lord’s Prayer over and over. The last thing I remember was seeing the clock over the door at 1.20pm while the hospital radio played “Stay Another Day.”

I woke up in a different and dark room, desperate for water. I could barely lift myself to drink from the cup and it spilled down me. I felt faint and there was immense pain in my throat and right hip. Everywhere else felt numb. I asked what time it was, around four or five in the afternoon. I was taken back down to the ward. I needed to use the toilet but nearly fainted and fell off it. I felt so heavy, like all my body weight had trebled and I was dragging my whole physical being across the floor. I remember screaming at myself to never go into surgery this size again, as I didn’t have the strength to hold me and my mass of fat upright. I didn’t sleep that night, instead I drifted in and out of faints. I couldn’t lie comfortable as the wires were pulling and my hip was throbbing and the hospital gown was strangling me. During the morning while waiting to be sent home I found myself noting what was going on with the others around me. Paige was recovering from back surgery and wearing a brace. Kerry was recovering from brain surgery, after having a tumour removed. Jan had become a new Ostomate. When I was seen by my surgeon, Mr. Ansell, he told me that I could go home and the operation had been a success, but I had lost alot of blood during the procedure, as the polyp – which by now I had named The Xenomorph – was technically too large for the procedure. But I was relieved that it was gone. No more toilet murder scenes. No more worry.

Waking up, Morning after surgery
Morning sunrise from my hospital window

I had felt more or less normal that morning, despite my sore throat and bad hip, but by the time I got back home my voice had changed. I sounded like I was talking through a pipe. I lost my appetite. My first visit to the toilet was agony, and after that I became too frightened to eat for having to go through it again. I couldn’t stand or sit or lie without pain. I couldn’t wear normal underwear because of constant leaks and pressure on my waist, and my skin began to react and come out in sore, inflamed rashes. And this was how I spent the Christmas season. I was rolling on the floor in too much pain to do anything. The only time I felt even slightly comfortable was lying on my front in the bath, and I lay there for hours, the water going cold and then being refilled. Everything I had prepared for the holidays was wasted as I just couldn’t face it. For the first time in 36 years, I didn’t touch Christmas Dinner.

The struggle spilled over into the new year. When I finally had enough money in my account, I invested in a bath caddy for all the time I was spending in the water. I was routinely nursed by my Cats. I was too frightened by the pain of passing anything to dare eating, so many days went by without meals, and yet I was still screaming on the toilet.

Bath Caddy essential for hours in the tub. Had to be Goth-friendly, of course!
Nurse Cyranthe attending her patient

As the pain and discomfort finally began to ease off, I wanted to reaffirm my healthy lifestyle and start fresh after I had regained enough strength, but underneath that chance of the worst outcome was still lurking. I hadn’t forgotten that I could still be like my Aunt Mandy. A well hidden, undetectable cancer that can’t be identified until its far too late. I absentmindedly started to prepare. I took out life insurance. I started looking up how to live with an Ostomy, how to prepare for chemotherapy and Radiotherapy, which complimentary therapies would work alongside my regular medical treatment, what affirmations and prayers I needed to keep in mind. I haven’t approached funeral arrangements and Will just yet, as those were just too big a hurdle to jump, but I prepared just in case that worst scenario that crept up on me in the quietest corners was to rear its ugly head. And I forced myself to be positive. I buried it all under a pile of forced positivity. I forced myself to think that way because any other way was going to make me so ill. Surely if it was that serious, I would have been contacted in the first week of the New Year, not half way through the month. By the time I got half way through January I was starting to feel more like my old self, and even dared to believe I wouldn’t be feeling that good if the diagnosis was anything but “all clear”. I didn’t realise just how much of a false sense of security I had been coaxed into. I feel so stupid now for daring to hope so deeply.

Finally, the follow up appointment date came through, the 19th January. All I wrote in my journal for that date was a prayer. I begged to God, to the Goddess, and to the patron gods of health that my cancer was gone. That it wasnt aggressive. That my rectum and bowel could be spared. But it went unanswered. The Cancer was as Mr. Ansell had suspected. He spoke to the presence of my dissolved, Hollow self that it was “Very aggressive, likely to come back and positioned too close to lymph nodes that could cause it to jump to other organs. It may already have penetrated the nodes. It may already have spread. A permanent colostomy is the only option.” I was about to kiss goodbye to my dignity, and what was left of my confidence. The Stoma Nurse came in, gave me a starter pack, told me alot of stuff. But none of her reassurances could neutralise the horror.

The first diagnosis in October was fear of the unknown. This second diagnosis is both the fear for the unknown and the grief for the known. I know my life is about to change forever and the life I had known for over thirty years, roughly half of my life, is gone for good. And then there is still the lingering unknown. How am I ever going to live with this? A permanent life sentence of humiliation and discomfort, loss of control and dignity. And the even deeper unknown.. That the story isn’t over. The cancer isn’t gone, and how much time I may have left.

They said they are “going for a cure”, but those words were hollow to me. All I could think was that I was now right back on death row, and if not that then a life sentence of taboo and humiliating dirty secrecy.

The Diagnosis

I vividly recall saying as I sat waiting to go in for the Endoscopy “I am not frightened of the procedure, I am frightened of the results.” I went in with the knowledge that they were looking for possible Crohn’s Disease, Ulcerative Colitis, or IBD. I was mostly ok with that. I had been diagnosed with Irritable Bowel Syndrome back in 2007 so I thought it would be logical for it to have perhaps advanced into one of these chronic bowel conditions. They weren’t pleasant, but by no means impossible to live with and definitely not capable of killing me. Up until this point the biggest threat to my life were my Mental Health conditions, which had seen me admitted to hospital for attempted suicide on several occasions over the last ten years. Besides, I had learned to live with this uncomfortable, bloody mass for the last nearly 2 years with it effecting little more than my daily visits to the bathroom. However, there had always been stuffed into the least reachable corners of my mind the idea that I just might be carrying something far more serious, but I knew that if I dared convince myself it was that serious I would not have made it through everything else that was going on at the time, balancing the Pandemic and its fallout against my fragile Mental Health.

When they told me I needed my partner with me, I knew this was it. They told me they had found something and I couldn’t hear or process anything else after that. All that rang through my brain was “It’s Cancer.. I’ve had it.”

I always knew that one day I would have Cancer. Ever since my Mum’s diagnosis in 2004 I knew it was just a matter of time before my turn came round. I saw one of my close friends at University succumb to Leukaemia at just 20 years old in 2006, my ex partner’s mother from Sarcoma in 2010, and my Aunt just before the Pandemic in 2020, from a Cancer that was so well hidden it couldn’t be detected until there was nothing that could be done to save her. Now that day had finally caught up with me, and I had left it far too late. 18 months too late. I was being sentenced to death at just 35 years old, and with absolutely nothing to show for having been on this earth.

I held it in waiting for the bus from the hospital and the long journey back home but as I approached the front door to my Flat my phone started ringing, it was GP. She said how shocked she was at the diagnosis and that ripped away the wall of denial I had quickly thrown together, that maybe I had misheard something and I had jumped, as my mind often did, to a fictional worst case scenario. I instantly broke down. I felt everything inside of me instantly dissolve,and every familiarity of life froze. I am dying, and because of my own prudish stupidity.

My thoughts instantly turned to Sarah Harding, dead from incurable breast cancer at barely forty years old. Jade Goody in just her twenties. I discovered the Radio 1 DJ Adele Roberts had been diagnosed with Bowel Cancer almost on the same day as me. I even dwelled on the irony of it all, that these last ten years, wasted on fighting my Mental Health and the stigma towards it, had begun with a Hospital Admission for passing blood and strange bowel activities, and the resulting trauma had led to my first mental health diagnosis and my eventual resignation from the world of work. That all those years I had been having problems with my bowels and I put it down to my IBS diagnosis from 2007, when in fact I may have been carrying this killer inside me for the best part of an entire decade. I became suspicious of every single sting of pain in my body. That it was the cancer and it had already spread. To my stomach. My chest. My brain. My blood.

They ran the MRI and CT scans and the Colonoscopy all within days of each other. In fact, I demanded they did it all with as little time to spare as possible. I couldn’t cope with being left in limbo. I couldn’t sleep with not knowing. I couldn’t wake without instant stabbing terror. I couldn’t function with my brain being taken over with thoughts of a long, drawn out and painful death. The original date for the Colonoscopy was not until November, but I wanted everything done before even Halloween came round. I’m not cut out for the waiting room of the unknown.

Within three days I was back at Hospital to start the process of investigation. MRI scan. CT scan. There is a nightmare I can remember vividly from childhood, where I was stuck lying on my back in a tunnel made of clay. It was barely wide enough to allow the span of my shoulders and the ceiling almost touched my nose. There was no way for me to turn over or turn around and I had to claw my way out backwards until my fingers and palms bled. Lying inside the tube of the MRI brought all of that back in clearest detail. They had given me headphones and put a radio station on, but the music was too quiet to drown out the sound of the machine, constantly searching me for 30 long minutes, looking for what was trying to kill me. The CT was a little less invasive, but I was so traumatised by the MRI I was barely able to concentrate by the time they called me in again. I only recall being warned that the scanning dye was going to give me a urinating sensation, but it didn’t. Instead it felt like fiery pines needles being dropped into my lap.

I did the Bowel preparation between the Sunday and Monday morning. Not eating was no challenge as Anxiety had killed my desire to eat days earlier already, but taking the formula to empty my insides was a situation of sensory hell. The taste made me gag. It nearly made me sick several times, and because I had to take it over 2 days with a night’s sleep in between, I was so frightened of having a night time accident that I barely slept.

The current rules due to the Covid Pandemic meant that I had to go into the waiting area for the Colonoscopy alone. Once I was alone, even with whatever distraction I could find, the terror built up until I burst. I started gasping and feeling dizzy. I started to get tunnel vision. I went into a full panic attack. They decided at that point to sedate me. I was given my first ever Cannula and all feeling was drained out of me. I don’t remember the procedure at all. All I remember was lying in the recovery ward, wondering if my last moments were going to feel like this – Semi conscious, aware of my surroundings and situation but too foggy and too exhausted to care.

And it was no exhaustion I had ever known before. A kind of exhaustion that could only be reserved for the terminally ill. Too tired to concentrate, to watch or read, or even to look out of the window or fuss the cats or hold someone. Too tired to think. Too tired to pray. Too tired to be frightened anymore. That all I will want is sleep, a sleep without dreams where I won’t have to wake up to this awful reality anymore. Nothing will matter anymore. Not how fat or skinny I look, what has been said or done or what has not, no petty squabbles, no fights, no achievements, no bucket list experiences. All that will matter is to be comfortable and go to sleep.

I returned for the Test Results on the following Wednesday, two days after the Colonoscopy. I nearly ran away when the appointment time came up and no one had called for me. I couldn’t bear hearing myself being told how long I had left to live. My fiance David and a receptionist had to coax me back into the Colorectal Department before I went tearing off down the corridor in terror. A Colorectal nurse called Angel and a specialist called Jared finally came into the room. They told me they couldn’t confirm Cancer. My Blood tests had come back normal. The MRI and CT scans didn’t pick anything up that was out of the ordinary. The Colonoscopy didn’t find anything beyond what had already been identified, and the Biopsies performed on the growth didn’t detect anything either. So they said what I had was a polyp, likely benign or an early cancer that was undetectable to the simpler Biopsies. It was able to be removed by surgery. A bigger biopsy on the polyp would then confirm cancer or not. The relief was immense, and wholly undescribable. My life suddenly opened back up. All I had to do was prepare for the surgery, go through it, recuperate and get back to something resembling normality. I was settled again, the nightmare was over.

Another Life, Another Cancer

Today is World Cancer Day.

I feel like just another unimportant person writing about yet another Cancer diagnosis. Yes, it is real. Yes, it is serious. Yes, it is life threatening. Not to worry, hey? So many people get it these days and so many survive. So many go on to live full and healthy lives after Cancer.

But.

But those lives carry the scars left by Cancer. They carry the changes. They carry the consequences. They carry the effects. And not all of them were normal, successful and straightforward lives to begin with. Mine certainly wasn’t, and isn’t now either, and won’t be in my hopefully Cancer-Free future.

I identify as a Goth. A lover of darkness and broken things. Of things that most people tell me to avoid for the sake of being happy, of being sane. So how can I, who never saw life as made of rainbows and butterflies, embrace and accept the cold, real, visceral darkness of Cancer? I am being forced to find those answers alone.

I never want this kind of loneliness to happen to another Goth. So here I am writing and documenting my journey to perhaps serve as guidance for other Goths who also have to tread this darkest of dark paths.

I should warn that this will come with its own index of trigger warnings. To join me you will get to know me, warts.. tears and fury.. bitchcraft and cuss words ..and poo and farts.. and everything else. I will be baring all during the lowest moments of my life, those that have gone and those that are still on the horizon. You might not like what you read. If Cancer is teaching me anything it is to screw politeness and denial and embrace brutal honesty. These are my opinions and my experiences. At times its going to read like a tirade of anger and self pity, but i believe anyone facing a life threatening illness is more than entitled to that. If what you read isnt to your liking, stop reading. The last thing a Cancer fighter needs are trolls. I can’t be anything more than human, especially when I will soon be a human with vital bits of me missing. At the same time, you will get to know my humour, my best support network of friends and family, my willingness to be a doormat to Cat paws. What makes this Two-Thirds-Cat One-Third-Human tick might hopefully resonate with you too.

Lastly, I don’t want Cancer to be a blind and lonely road whatever the outcome. I am Kurona, Lady Midnytemare, and I am no Cancer Warrior. This is my Long Hard Road Out of Hell.