Drop the Pilot
Don't use your army to fight a losing battle
I was laying on the bed slightly propped up so I could give Elvis, my ileostomy, his wash and dress him again for the day. I’d covered him up with a warm tissue while I cleaned the old adhesive off my stomach. I need to cover him to contain any projectile output that he decides to launch while I am bathing him. Once that happens to you, you never get fooled again. Although cleaning output off the wall wasn’t the best start to the day, I can’t hold it against Elvis. He keeps me alive. There’s a lot of information about why and what an ileostomy is, however to be concise I can summarise it thus; it’s a section of your bowel that normally is inside your body that has been placed outside of your body surgically. It is then superglued to your tummy to make sure it doesn’t run off in the night.
When I was able to understand what had happened to me and why, I was strangely curious. Up until that point all stoma care had been carried out by the nurses. Bag change every two days, using the template to cut a new one. Cleaning and finally replacing the bag had all been done while I was sedated. The template is normally cut by a stoma nurse, in my case Sharon had seen me as soon as I had come out of surgery. Visually measured up the ileostomy, cut the template and tested to make sure it fitted over snugly. From then on, you would place the template over a new bag, draw around it and then cut along the line. This would ensure that each bag would fit perfectly over the ileostomy every time. Eight months down the road from then, I didn’t need a template, I could cut the bag exactly. Practice really does make perfect.
When I was at home, my partner would help me with the cleaning process and also applied a barrier thin ring around Elvis. This was to protect my skin from the output. Elvis, being the mucky puppy he is, didn’t mind being covered in output as he was designed to handle it. My skin wasn’t so we had to protect it, the barrier thin did that. Once she had placed that around Elvis, the new bag would be placed over him and onto the ring.
The old adhesive was proving stubborn, another warm disposal cloth was needed and a quick blast of the anti-adhesive spray. I was busily wiping away a blob of adhesive when there was a knock at the door and Dr Hardy came in. She stopped in her tracks when she saw me, glanced down at my exposed chest and stomach and realised what was taking place. She smiled at me and reached for the door handle.
“I’m sorry to disturb you, I will give you say…ten minutes and wait at the nurses station. If you do finish before then please come and find me?” she said. Dr Hardy stood in the doorway. I nodded to her and she was gone.
I would say to her that I wasn’t bothered if she wasn’t but I had quickly learned that there were somethings in a hospital environment that were still considered private. Cleaning your ileostomy was one of those sacred things. Besides, unless you are a stoma nurse, you probably wouldn’t choose to be in the room simply because of the smell. And to be fair, you wouldn’t invite someone into your lavatory while you were sat there squeezing one out. It made sense, albeit in a roundabout way.
I had just about finished but needed the warming blanket over the bag to ensure a decent adhesive stick to my tummy. I decided to find Dr Hardy and could have the warming blanket on while we spoke. I double checked the plastic foot of the bag to make sure at no point was it already coming off, slid off the bed and made my way to the nurses station. Ann, Dr Hardy, was talking to Vashti, she glanced and saw me coming up the corridor towards her. She waved to the nurses and met me half way.
“All okay with young Elvis?” she asked.
We arrived outside my room and I held the door open for her. She paused for a moment, smiling she went in with me following. The door quietly shut behind us.
“Elvis is fine thank you. Doing what he does and doing it well. I think I am used to him now and the various routines I need to do to ensure he remains healthy” I said.
“That’s good to hear Jack. Some people initially have significant issues and problems with an ileostomy. They find adjusting to it hard and they become somewhat resentful. However it is good that you have adapted and you are getting on well with… Elvis” she said grinning broadly.
It was the name, Elvis. I had called mine Elvis as soon as it became appropriate. Partly because he is a superstar, and partly because it was a name that everyone remembered. The hospital staff, the district nurses that came to see me at home, the doctors and close friends who knew about my medical condition. They never forgot Elvis. That was the point I think. They may not remember me after I’ve gone but they would remember that someone called their ileostomy Elvis. And that made me smile.
My laptop was quietly playing Magnum’s Start Talking Love, I hadn’t noticed up until this point that I had left it on. Many years ago a rather seedy fellow had grunted at me that The Pixies was the rock band for boring old men. This coming from someone who listened to a funk jazz you would normally hear in a lift or strip club. I may have an eclectic taste in music, but essentially it was music and not the shit he would try and subject me to when he would come round to my flat on a Friday evening.
I reached over to the laptop to stop the music.
“I don’t mind the music Jack, please leave it playing” she said.
I pulled my hand away from the laptop and got myself comfy on the bed while I arranged the warming blanket over my chest. Ann leaned across and straightened the blanket for me, I flicked the switch on the control and lay back. She went over to the chair and pulled it closer to the side of the bed. Sitting down she produced her notebook from her pocket and leaned back in the chair as she turned the pages over.
“How are you feeling overall, you’ve been here for quite sometime now. Dr Crusic was going to discharge you in the middle of this week but after your tumble the other day he has decided to keep you in for further observation”
I shrugged. “I’ve been here so long now it’s beginning to feel like a home away from home. I don’t give it much thought really. I’m remaining positive I think and doing what I can to keep active. All distractions I suppose from considering the inevitable” I replied.
I wasn’t sure I had really answered her question, it was somewhat a moot point these days. How I was feeling overall was no real measure of what was going on inside of me. Right up to where the cancer had dropped like a fucking anvil through my colon, I had been feeling absolutely fine. When I had been sat down and explained in detail what had happened to me I remained stoic, my partner had tears welling up in her eyes. On reflection, I was most likely in shock. Shock that I had to confront my own mortality and shocked that a cancer was squatting and growing in my body.
The warming blanket was beginning to get a little hotter than I wanted. I reached for the control, thumbed it off and lay back again. I gave Ann a sideward glance. She was writing in her pad completely immersed in what she was recording. Bryan Ferry and Slave to Love started playing. Ann looked up from her notes towards the laptop, she glanced back at me.
“Have you at any point considered the… inevitable” she asked.
“Sure” I replied. “Sleepless nights mostly are when those thoughts creep in. It’s the circle of life and some get called young and some get old and ugly before they are called” I added.
“Are you religious Jack?”
“Was I suppose. I have been christened and confirmed, Church of England. My grandparents, they brought me up mostly, my Grandad was religious. I studied RE at school for O and A level. You could say I had more than a passing interest in world religions and specifically C of E.”
“You said ‘was’, do you not consider yourself religious now, or should I say…”
“I’m not now, no” I said cutting her off mid sentence.
Ann tapped her pen on the pad and fixed me with her eyes. I folded up the heat blanket and tossed it onto the shelf beside me. I pulled up my layers so I could feel around the seal of the stoma bag. The join to my stomach was sound. It would last the day and a half. Fingers crossed!
“That was quite a stern ‘no’ Jack, have I offended you asking about this?”
“Not at all Ann. It’s a case of the more you study religion the more it loses its quantifiable value. For me anyway.” I could have said more, a lot more but I thought it sensible not to further elaborate.
She leaned forward placing her notebook on the side of the bed. She clipped the pen to the top of the pad and gently eased herself back into the chair.
“If you ever feel that you would like guidance then please bring it up in our sessions. I know the vicar here at the chapel, he will listen to you no matter the subject. It might be an avenue of comfort you have not considered”
If there was a God and I am not saying there is or isn’t, they will eye me with great suspicion. Forgiveness only goes so far and I had said and thought some really quite contemptible things about religion. In my foolish youth I had become quite hostile to organised religions. I would argue with friends who were religious. I would argue with my vicar. When it came to the topic of religion, I would argue with anyone. By doing so, I was announcing to everyone that I was a complete and utter twat. I didn’t get it and my ignorance was on display for everyone to see. It was shameful behaviour.
“Jack? You’ve left me again…” she said interrupting my thoughts.
“That’s very kind of you Ann. Maybe I will stop by the chapel and introduce myself”
Her hands dropped to her thighs with a slap, a rather understated clap. She smiled and placed her hand on my shoulder. It was a reassuring gesture I had grown to like.
“Let’s leave it here for today and continue tomorrow?” she asked.
Ann picked up her pad, slipping the pen into her breast pocket once again and headed for the door.
I reached for the bed control and raised the backend up. It was hit and miss, there was a sweet spot. If you didn’t get it just right after a while the angle would become ultimately painful. I reckoned I had got it just right but time would tell. Trying to hook the control back onto the bed frame I thought I had it and let go only for it to clatter across the floor.
“Fuck it!” I spat.
…and Neither One of Us (Wants to Be The First To Say Goodbye).
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I am diagnosed with terminal stage 4 colon cancer that has metastasised to my liver. I now have Type 1 or Type 2 diabetes (still waiting on diagnosis) and as a result of the colon cancer, I have an ileostomy called Elvis.