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.
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.
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.
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 Gothstomate 