Diagnosis – The Gothstomate

The Hospital List

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

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

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

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

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

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

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

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

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

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

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

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

Humour Me..

I haven’t gone a single day since the diagnosis without shedding tears. Some days it’s been a little trickle for five minutes. Other days it’s been like the heavens have opened for hours. As a Goth, I have found myself asking “am I going to be the only Colostomy in the Graveyard!?” and that made me realise that my dark humorous side was trying to push its way in as well. I didn’t think at first I could make comedy out of this. Due to the need to put walls between myself and the unstoppable rampage of Depression, Anxiety and C-PTSD, over the years I have developed a very dark sense of humour. I’ve both been called very funny and utterly inappropriate. But for all my jokes towards others, whoever they may be, I am a master of self deprecating. I was long taught not to take myself so seriously, and while I have utterly failed at that due to Autism scrambling my brain, I took up the “make fun of yourself” to keep a smile on your face approach.

Since the diagnosis I have found myself making more and more dark humour out of the circumstances.. Or Circumcancers. Like, Own the diagnosis. Own the condition. Own the new normal. Right? I’ve certainly worn myself out crying over it. It’s never meant to be offensive to others, either. Certainly not like certain politicians targeting Muslim women.. or certain comedians and their holocaust references, after all.. (I’m sure we all know who I am referring to there!) surely those of us who live it also have the right to laugh it.

I have also been raiding the Internet and my social media feeds for a whole host of barking mad cancer and Stoma related memes. I just hope that laughing isn’t going to bring on a Hernia.. Some of the things the darkly comedic side of my brain has come up with in the past few weeks have been something like this: I told David, who is an IT tech, that My system has been corrupted and I need a USB installed with an external hard drive. I asked myself somewhere along the line “Did you consider naming your Stoma after ((insert pop music singer here)) because their songs are utterly shit?!” I have gained a new qualification from the University of Life.. My Stoma Diploma. As a certified geek I pulled one about Levelling Up, or Colostomy. Legendary Item. Binds when equipped.

Cancer is going to leave me with baggage. Colostomy baggage. I just hope that my surgery is not going to take my sense of humour away, since it is taking so much else.

Making The Most.

48 Hours of my Pre-Op life is now all that is left.

I was never going to write this blog post. I was supposed to do something far more constructive than have another moan on the Internet.

I got back home to Cardiff on Friday. I had been feeling relatively stable after spending those weeks with my parents and living along with their routine, however humdrum, it still gave my days structure. But now that I have gone back to my own life, the weight of the reality has crept back, the horror stories have crawled back in and my sense of routine has dissolved. I should be getting all of my various things in order ready for my Surgery, but today I have crashed and have only a miserable wreck of a brain to work with.

I decided that the last five days I had left Pre – Op were going to be spent making the most. While I was still able to go out, one of my very good friends took me out for Saturday afternoon and evening. I went to spoil myself a little in town before meeting up, then we went for a Tapas Lunch, dessert from Hotel Chocolat and many, many bottles of Wine. The following day I took up the invite from another friend of going to a local a pub for Sunday Dinner, and spent most of that afternoon draining more glasses of wine and bitching about Vladimir fucking Putin. Possibly my last ever Tapas. My last traditional Sunday roast. My last Chocolate. My last night out drinking and seeing friends without being terrified by toileting habits. Is it possible to mourn over food and dressing up in your best clothes and having weekends out with friends? They are all, very soon, going to be part of an irretrievable past.

For the three days isolating prior to surgery, I decided that for each dinner I would have a meal that I know I will likely have to give up post Op. Not just for the sake of my Stoma being manageable, but for the sake of even a chance at losing weight. I’ve barely managed to get a few pounds off myself since the limitations of the Pandemic ran into the limitations of Cancer. Yesterday we had my last ever KFC (naughty Cluck-Cluck!) for dinner. Tonight will be my last ever Mango Lamb Curry. Tomorrow will be my last ever Pizza. I am even having last-ever Peanut Butter on Toast for Breakfast and last-ever Cheese and Ham Croissants for lunch.

Me being me, it was all planned out and every hour was accounted for. I was going to get all of the housework and tidying and cleaning done. The mountain of ironing was going to disappear. The Hospital packing was going to get done. I wouldn’t have to worry about coming home from hospital to a Flat full of chaos, dust, washing up and cat hair. Of course I still had Pre-Hab and Therapy Meetings to keep up with, but I had three whole days indoors that needed filling. I got the kitchen cleaned and tidied and my bags unpacked from my time away at my parents, the Altar rearranged and the last of my hospital things ordered off Amazon, but by the late afternoon I was starting to flag. By the time we sat down to eat, I was starting to feel ill. It was at this point where it set in that I had picked up Covid. I had been tested in the morning, but the results weren’t due for another 24 hours at least. I felt my mind split itself in half. One half was berating myself for putting having a wild time out above protecting my health ready for hospital, while the other half was begging for Covid just to have another desperate week or two in the body I had always known. I never thought I would EVER catch myself wishing to have Covid. As I was eating I started feeling a bit sick, and not long after finishing I had to make a dash for the loo with a bad belly. I know it’s eating fast food, and I know that once in a while the sheer enjoyment of the food is worth the price of being stuck in the loo for a time, but that won’t be the case with a Stoma. What would be a bad case of “it’s something I ate” could put me in hospital.. Forget just the bathroom.

The following morning, this morning, I woke up from some very vivid and disturbing dreams. I tried doing some of the EFT Tapping techniques I had been learning over the last few weeks, to try and keep the rising Anxiety Attack at bay, but I think I am just too much of a rookie with it. By the time I got a call back from Tracey the Stoma Nurse, I was in bits on the bathroom floor. We talked for almost an hour. For someone who says she is honestly not familiar or trained in either Autism or Mental Health, she did a profoundly better job than some I have met from both of those fields of expertise. She reckons there’s some Positivity in there somewhere, but right now it is buried under a mountain of horror, and alot of that horror is shared by maybe 800 of 800,000 Ostomates out there. She reminded me that I am once again doing way too much. Taking on way too much. It isn’t just Stoma Surgery. It isn’t only Cancer. Its life altering surgery plus Cancer on top of Pandemic Stress, on top of CPTSD, Dysmorphia, Rejection Sensitivity and all its other co-morbs, on top of Anxiety and Depression, on top of an Autism Spectrum Condition, on top of the social pressure just to be able to live in a high flying, high achieving modern world. I can’t handle everything at once, but equally I have no idea of how to unpick the mammoth tangle and find somewhere to start from in the first place. I’m overrun with this meeting and that phone call, and I can’t keep up with them all, let alone take in all of the advice and then apply it to action. I’m not Wonderwoman, and I even think being Wonderwoman would be easier to manage than this.

After that call I was left as exhausted as I had been the evening before, as if sleep had never even happened. I could barely get my brain to function on doing much else past playing Candy Crush, and I had two other Pre-Hab meetings in the afternoon, so I gave up on all thoughts of cleaning. The Flat is still very much in disarray as I sit here writing, necking wine. It is still way beyond my standards of cleanliness and the chaos and mess makes me feel dizzy and sick. The packing for Hospital is still sitting ignored in the hallway. For all of my busying yesterday, today has been a kick in the spleen. I can’t focus on anything beyond perpetual dread for what is to come, and wanting to drown it, and me, in a bottomless vat of red wine.

Despite my efforts to make the best of these last days, I think I knew the whole time that everything would catch back up with me. Everything that I had buried during my time way. When I was at my parents I was able to separate myself from the situation to some extent, but now I am back here in the thick of my own life it has all come flooding back, knocking me over and washing me away like being hit by a tsunami. I don’t know how I will be able to face life as it gets harder without my parents to escape to, like how I will face it when they are gone, and I only have myself left. I don’t get the same kind of reassurance from anyone or from anywhere else. It makes my desires of escape and freedom and independence when I was younger utterly vacuous.

I think once again my capacity to look after myself, despite all of the advice I have been given, has dissolved into nothing. Those next 48 hours are likely to be spent in a Wine-induced cloud of confusion.

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

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 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.

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.

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!

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.