Living with Steve...

Hello Steve, welcome to my world...

Who'd have guessed that a stoma can have a personality? Mine does. Meet Steve. Steve isn’t just a stoma; he’s a full-blown diva. A self centred narcissist. Steve resides on my tummy, lounging in his luxurious, sexy little bag called an ileostomy. Steve doesn’t just live in a different time zone; he’s on his own planet.

Steve has zero manners and an "I don’t give a damn" attitude.  Steve's only job is to deal with what I eat. High fiber? Steve flips it the bird. Peas, sweetcorn, onions? Steve gives them the British two-finger salute and sends them out like they’re on a conveyor belt. It’s like he’s auditioning for Britain’s Got No Talent.

And the farts! Oh, the farts. Steve doesn’t do silent. He’s the bloke at the party who lets one rip and then looks around like, “What? That wasn't me.” Subtlety is not in his vocabulary.

But here’s the thing: Steve may be a selfish arsehole, but he’s my selfish arsehole. He saved my life, extended it, and gave me a second chance. So, cheers to Steve; the uninvited guest to my life who just so happens to be the hero of my life-story.

June 28th 2023

Some 40 days after I was told that news, I had my operation. That's pretty damn fast considering the state of the NHS in those post COVID times. Back then, I was still doing number twos down the pan. I was given some medical drinks to take the day before the operation to ensure my bowel was completely empty. It was, oh so very, very effective! I have an iPad with all the TV apps loaded, and I watched an entire football match, and post-match analysis, sitting on the loo. It took hours for all those red marks on my legs to vanish. 

The surgery itself was scheduled for some 3 hours. I was sliced from the top of my belly, down and around my belly button, and, all the way down to just below the pubic hair line. I was shocked by how long the incision was going to be. But, hey! I asked the doc, seeing as he was cutting me that far down, could he please add a couple of inches to my manhood. Seemed a reasonable request at the time, because although I laugh like a horse, I am not hung like one!

The surgical plan was to cut out the tumour, and a number of lymph nodes. They would leave me with a temporary stoma that required me to wear a poo-bag just above my waist and to the right (an ileostomy). The bag was to keep waste away from the scar tissue, so it could heal, and in 9-12 months, the stoma would be reversed. I would go back to doing number twos down the pan. 

Back to the operation… There were complications and I was under for just over 4 hours. They removed the tumour and 18 lymph nodes. The lymph node biopsy revealed cancer in the 4 nodes closest to the tumour. 

Oh! I also picked up a very bad infection. Some 12% of people who have their pelvic area split wide open, will pick up an infection. It's not that the operating theatre wasn't sterile, it was simply bad luck. I was one of those unlucky poor bastards. When your number is up, it’s up! Statistics are so impersonal. 

Five days after surgery I was discharged with just a ton of meds, and 28 self-inject syringes containing drugs to avoid blood clotting. 

My chemo plan

I was scheduled to have 6 sessions (over a 3 month period) using the 7 day chemo rule. Contrary to many people's experiences, I didn't really have such a bad time with chemo - at first. I lost my appetite, craved cold lollies, I lived on Calippo ice lollies, but I did not lose my hair. Chemo made me weak, it made me sleep 15 hours a day. 

It wasn't just the weight loss that got me, I also lost muscle tone. Atrophy became another thing I had to deal with. I became so weak that I could only just barely walk. Climbing stairs was impossible without hanging on. 

On the plus side, I caught my side-on view in the mirror and smiled to myself. For the first time in some 25+ years, my chest stuck out further than my belly. 

I never finished my planned chemo. The chemo had reduced my immune system so much that I could not fight off any form of infection. That infection I picked up from the operation was a very nasty one. Blood tests revealed my infection markers were way off the chart. As a result, I ended up with sepsis for heaven's sake. My condition was so bad that the chemo oncologist stopped my treatment. I only completed 30% of my planned sessions. Chemo suppressed my immune system so much that my hibernating polio virus woke up and decided to run riot in my body. 

My early depression

My demons told me that a life of living on the loo, was completely pointless. I lived on the loo for weeks. I could not leave the house, I could not walk the dog, I could not watch a movie (unless it was on my iPad on the loo), I could not do any normal-life stuff. I didn’t even have time to boil an egg for heaven’s sake. All I could do was sit there and clean out Steve. I also experienced my worst nightmare of living with an ileostomy bag - the fucking thing exploded. On this particular night, I was so tired that I missed an alarm to go do Steve maintenance. My bag was bursting at the seams. I got up and the damn thing just exploded away from my belly and emptied everything down me and onto the bedroom carpet floor (we have beige coloured bedroom carpets)… My demons told me that this was not my lowest point to date, there was worse to come. A very deep self-loathing took hold. I just stood there in my own bloody shit and cried and cried. My demons laughed and grew stronger at my demise. I did not know what to do and how to clean than mess up.

• I could not live my life like this. 
• I did not want to live like this. 
• I had very bad, deep and dark depressive thoughts. 

My life was becoming increasingly pointless…  

Friends kept telling me that I need to stay strong, I need to fight, and I need to stay positive… Sod you all. I did not want to hear that over and over! They meant well, but they could not / did not understand my pointless existence. Even now, I struggle to explain my deep depression and self-loathing. If you have never “been there and done that”. No amount or learning, reading, research, etc. can give you that “life is pointless” feeling! 

Yes, I considered suicide on more than one occasion. My demons kept telling me to do it. They assured me it would be easy and painless and once I had topped myself, I would be rid of them forever. I had enough meds and pills, to just overdose, go to bed and never wake up. Why didn’t I? I don’t really know. My family, my granddaughter and my dog were good reasons not to. Also, I did recall something Sir Billy Conolly said in one of his shows “There are hundreds of people in the local graveyard that would love to have your problem…”  

It's difficult to explain my depression. It very much changed my life. I was having feelings that I could not explain, and I was experiencing simultaneous emotions that logic says do not typically belong together. For example, I could be both very angry and very tearful at the same time. If you look at the page on Depression, a lot of what you will read is 'me'. I just didn't give a damn about every-day life events and needs. 

My brain explodes

I could not control my thoughts. I felt like my brain was on fire and was going to explode. I was having hundreds of thoughts, all at the same time, and they all detonated at the same time. My brain would repeat this detonation over and over. This uncontrollable brain activity drove me into a deep depression that I could not escape from. I realised that I could not cope and I needed psychological help. Despite having my family around and supporting me, I felt very lonely and isolated. I was not nice to live with. I became irritable and bad tempered. No matter how much I tried to explain what I was going through, I just couldn't find the right words and ended up in a very steep downward spiral to hell. My constant number one thought was, I need to end this pointless life! 

On top of that, Steve was being an absolute bugger at night. He was so active that I had to set my alarm to wake me up every 2 hours to go do Steve maintenance. When you get old and need to pee at night, you sort of do so in a sleepy state. You pee, go back to bed and, because you are drowsy, you tend to easily fall back asleep.

I need to manage what Steve produces when asleep. I need to be alert and fully awake when ‘cleaning him out’. If I ignore Steve and just go back to sleep, my ileostomy will explode and I will literally wake up in the shit. The thing about this part of my life is when I get back to bed… I am  wide awake, my brain becomes hyperactive and full of random bad thoughts. Its when my demons are most active. I was desperate to find something to get my brain to concentrate on, something ‘good and positive’.

Steve did not (and still does not) allow me to get a full eight hours sleep. That lack of sleep doesn't help when dealing with depression.

I am not religious…
As if all this wasn’t enough to deal with, I ended up with a hernia. A hernia for heaven's sake! I looked up at the sky and quietly asked (God?) "Really! On top of everything else, you think that I also deserve a hernia? Give me a fucking break will you!"  

From gunk to sepsis 

The infection was so bad that I was admitted to hospital. My surgical team created a plan to deal with my my gunk, which led to sepsis. I spent 8 weeks on my back and had a further 6 operations. It was NOT a quick fix solution. My surgeon spent so much time down at my arse-end, that I almost forgot what he looked like.  

Eight weeks on my back

During those 8 weeks on my back with all kinds of drips feeding multiple cannulas in both arms, they just could not stop the production of gunk - regardless of how many antibiotics they gave me. There is a surgical name for what I had done, but it escapes me. Basically, I had a bag at the end of a tube that was inserted through my bum into the pelvic area to drain the coffee coloured gunk created by the infection. In a couple of those procedures, they even attached a 'surgical sponge' at the end of the tube (in my pelvic area) to help absorb that gunk. Each procedure was done under general anaesthetic, which had a couple of curious side effects on me. 

1. Every time they sent me off to sleep, I loved the way I just drifted off. I would simply, quietly and painlessly, go into a deep warm, comforting and beautiful sleep. I became addicted to the anaesthetic, and I wanted more. It was so beautiful, that this is how I wanted to die. Gently go to sleep and then nothing, no pain, no gunk, no kryptonite - no bloody demons.
2. Every time I woke up, I was on a high and wanted to party. I wanted to take everyone in the recovery ward down to the pub. I even tried bribing the recovery nurses, to go buy lots of cans of lager and chilli flavoured Doritos. 

I found a mission that became a passion

As depressing as my pointless life was, I still desperately clung onto the hope that I could find something, anything, to reverse this awful self-loathing. My demons were always present. My answer came from a conversation with a guy in a bed opposite mine. He too was a cancer patient and as we talked and compared who had the biggest cancer-dick. [Mine is bigger than yours! No it fucking isn't!]  We laughed and cried and became good friends. We watched a couple of England matches in the Euros (on my iPad and we both bitched about how many times England passed the ball backwards rather than attack the opposition's goal). He loved my dark sense of humour and encouraged me to share my story and outlook with others….  A couple of days later, I published version 1 of this website. Working on my website kept my brain from exploding.
It became my mission and passion to help make others ‘cancer aware’.

My psychologist was a massive help, we discussed many things that shall remain private, but I will share one recommendation that kind-of helped. I was desperate and willing to try anything and everything. I was not going to be that cantankerous old git in this space. We talked about sitting beside a peaceful and slow flowing river, where I should try to let all those bad thoughts roll onto a leaf and wave them goodbye as they simply flowed away.  It kind-of worked, but I modified this scenario somewhat. Instead of putting those hundreds of bad thoughts on a single leaf, I put each bad thought on its own leaf. I then kicked them into the river and told  them to “fuck-off and die”.  

One good thing that resulted from having my bowel removed, is that the demonic “what-if-ball” just went away. There were no more “what-ifs”. No point in worrying about a scenario that was no longer possible. Physically, my life became very clear. Steve had now become my permanent life long partner. In my brain (still full of demons) there was a clear acceptance that I had to learn how to make Steve my friend.