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.
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.
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.
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 Gothstomate 