Superman has a stoma...

I am a UK baby-boomer. Male boomers were encouraged, to be tough, to man-up, not to cry, and to not show fear. Men were shaped by traditional expectations of masculinity, stoicism, bread winning, and leadership. 

Back then, men were raised to be Superman in their world! 

Cancer doesn't subscribe to political, racial, religious or gender views, Left or right, black or white, male or female, hero or zero, cancer simply just doesn't give a shit. It is the ultimate leveller because anyone and everyone can get cancer. 

My oncologist gave me a stoma. I didn’t want it. I didn’t ask for it. Nevertheless, I now have it. My stoma is for life. I have no relief, nor escape, from it. Wherever I go, it goes. I can never escape it. I can’t even take a couple of hours break away from it. 

I will die with the damn thing!

Who'd have guessed that a stoma can have a personality? Mine does. Meet Steve. Steve isn’t just a stoma; he’s a devil and a sod. He is a self centred narcissist. Steve resides on my tummy, lounging in his luxurious, sexy little bag called an ileostomy. Steve lives in his own world and does what he wants, when he wants - and as often as he wants.

Steve has bugger-all manners and an I don’t give a shit attitude (bowel cancer humour). His one-and-only job is to deal with what I eat. High fibre, peas,  sweetcorn, onions, peanuts, etc., Steve sends them out -as is -like they’re on a conveyor belt. Steve farts and he doesn’t do silent. He’s the bloke at the party who lets one rip and then looks around like “What?".  

I’m at that age, where every 2 years, the NHS sends me a poo-test package, which I have to return with a  sample. In 2023 I returned that package thinking nothing of it. Less than 4 weeks later, I got that call. They wanted to stick a camera up my bum, and have a look because (shit) they found something that need further investigation...

As a boomer, when they told me they want to stick a camera up my bum... my initial reaction was - Nikon, Canon, Strap-On...  no way-Jose!

16th May 2023

My 1st Colonoscopy.

I was somewhat bemused at my colonoscopy. I arrived on time, was given a gown (open at the back - for obvious reasons), shown to a changing room, and was told to close the curtains for privacy. 

Privacy? You’re having a laugh!  I was about to lay on a surgical bed and not only expose my awesome arse to some 8 people who had never seen it before, but they were going to take a real close look at my ring-piece because they were going to poke a camera (much smaller than a Nikon / Canon, etc.) through it!

They inserted a cannula, pumped me full of “happy drugs” and told me they could give me more drugs if I started to feel pain. Sod pain! If you stick a camera up my bum, I don’t care how small it is - give me all the drugs you got man! 

My hospital colonoscopy Unit is very modern. There were 2 screens by my bed. One for me, and the other for the doc. I was so high on pain relief meds, that I felt almost nothing. I was fascinated by what I could see on my monitor. 

It reminded me of a scene from the 1966 movie Fantastic Voyage. The scene where a miniaturised submarine was injected into a body and travelled through the host’s bloodstream. The only thing missing from this visual feast was the soda and the popcorn. It was so very surreal. 

15 minutes later and they were done. They gave me a cuppa and some ginger biscuits. I only had to wait 15 more minutes for the initial results. My wife was going to pick me up outside the front door of the colonoscopy unit, but they insisted that she too be present for the results. Why does my wife have to be there? Superman doesn’t need his wife to face any challenge!

Life changes so very quickly when the oncologist looks you in the eye, and says those words nobody wants to hear: 

"I'm sorry, but we found a tumour..." 

28th June 2023
Bowel Cancer Surgery #1.

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 2s 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 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. 

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'm 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 2s down the pan. 

Back to the surgery… 

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 a number of nodes close 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.  I was one of those unlucky, poor statistical bastards. When your number is up, it’s up! Statistics, like cancer, can be so very 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 3 months) 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 ice-cream, but I did not lose my hair. Chemo made me weak, it made me sleep 15 hours a day. 

I went from fat bastard to slim bastard in almost next to no time. I simply stopped eating! When you sleep for 15 hours, you’re not awake long enough to take in the calories needed to maintain your health and body weight. That much weight loss qualifies for Weight Watchers Slimmer of the Year. However; I don't recommend cancer as a weight-loss programme. 

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 almost ended up with sepsis for heaven's sake. My condition was so bad that my chemo oncologist stopped my treatment. I completed less than 50% of my planned sessions. Chemo suppressed my immune system so much that my hibernating polio virus woke up and ran riot in my body. 

That infection made my life unbearable. I lost my ability to defend myself. I had no power against the demons that were going to royally mess with my brain. Their plan was simple... Take the bad physical aspects of my cancer and make my brain think it was a million times worse than it actually was. 

Without getting too graphical, my entire pelvic cavity was constantly filling with brown (let’s call it) gunk. There was nowhere for this gunk to go except to fall out of my bottom. This was 100 times worse than Delhi Belly. Ever been to India? The water there is so bad that you are advised NOT to have ice in your Gin & Tonic.

When I had to go, I had no choice - I had to go. I could NOT Be more than 30 seconds from the loo. I do not exaggerate, I hardly needed to push. The worst of this was that I would sit on the loo for maybe 10 minutes, and when I felt like I had finished, I would clean myself, go put the kettle on and then the urge to ‘go again’ would drive me back to the loo. My cancer team increased my antibiotics, but gunk-production was relentless…

My demons convinced 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 - 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 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.  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 this 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 bastard 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 (I'm) 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 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. At this time of night my demons are most active and most evil. I was desperate to find something to get my brain to concentrate on, something 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!"  

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

During those 8 weeks on my back with all kinds of drips feeding multiple cannulas in both arms, antibiotics just could not stop the production of gunk! 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. 

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.

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. 

My 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 boomer 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 my cancerhub website. Working on my website kept my brain from exploding.

It became my mission and passion to make others ‘cancer aware’.

A couple of months before my surgery (and chemo), I had my eyes tested and had to buy new glasses as my prescription had changed. I treated myself to a couple of pairs of Ray Bans. When I got out of hospital (after being on my back for some 8 weeks), I noticed that my eyesight was a bit off! I got my eyes tested again, only to find that my prescription had dramatically changed. This was because of a chemo side-effect. Not good as I had to get the lenses in those nice Ray Bans changed. Not cheap…

My 2nd colonoscopy.

The procedure was pretty much the same and my 1st colonoscopy. Arrive, put on the gown, draw the curtains for privacy, get my happy drugs, expose my bum and ring-piece without setting off the fire sprinklers, and watch the monitor… 

However, this time I didn’t accept the maximum pain relief. I wanted to be compos-mentis enough to ask “what’s the hell is that I am seeing?” Good job I did.

I didn’t like what I saw. More importantly, neither did my surgeon.

The results were NOT encouraging. My scar-tissue (around the tumour removal site) was not healing as expected and there were signs of necrosis!  “We” were facing defeat from an increasingly bold, mutated and more resilient form of kryptonite…

The light at the end of my tunnel was diminishing and as it dimmed my depression and self loathing took a strangle-hold on my very pointless existence! My demons introduced me to a game they played in my head to mess with my brain. 

The game was to constantly bounce this huge “what-if-ball” from side to side. What if they can’t reverse the stoma? What if I have to live with Steve for another year? What if my bag explodes in the pub?

What if, what if, what if…
Please - get - out - of - my - head!

Even when doing something great and pleasant that what-if-ball was still there, lurking in the deep recesses of my mind, just bouncing enough to remind me it was still there, and it would patiently wait till it could once again burst into uncontrollable action.  

26th June 2024
Bowel Cancer Surgery #2.

My 2nd surgery did NOT go as planned. Once again, I was cut wide open. The prognosis was really bad!

My bowel had died! The infection had caused so much damage down there, that blood and oxygen was not able to reach the places it needed to. Long story short, they removed my bowel and left me with a bag for life.

Now, you’d think at this time that I had finally had all the bad luck I was ever going to have...  Well fuck-you matey, you’re not yet at the bottom of this particular bad-luck barrel. As they were removing my bowel, they damaged my water-works between my bladder and my nob. It was that bad, that they had to urgently call in a urologist to insert a stent down there. My demons were still at it…. “Ha Ha matey... There is yet more to come!” This was now literally taking the piss…. 

Gunk, sepsis and Kryptonite combined, mutated and emerged victorious. I had so many cannulas in both arms that I felt like a pin-cushion. 

The photo below is scary. You can only see one arm because the other was used to take the snap. I look at this and ask how many bloody drips does a person simultaneously need?

The consequences removing my bowel drove me into deeper depression.  My demons taught me that depression is a bottomless pit and they had finally defeated and killed Superman. 

Superman was finally and irrecoverably dead.

A psychologist helps me
master my demons.

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.

I still have fears about horrible bag smells, bag leaks and explosions, and having to wake up every few hours to clean out Steve, but that aspect of my life is now gone. I changed my ileostomy brand and for the first time in my life, I too can now boast that I have a sexy little black bag. Dolce and Gabbana - eat your heart out, you’re missing a big revenue stream because our community changes bags everyday. 

I'm doing OK. I’m not yet beyond my demons. The bastards can still reach up and drag me down. There are not so many of them around anymore. I’m on the road to recovery. I have learned to tell them to "just fuck off and die!" and they no longer keep me down for days and days. Recently, I had 2 episodes of my worst nightmare (which is no longer my worst nightmare) where Steve was so active, he (like Elvis) "left the building". My reaction was: Oh well, let's get this mess cleaned up you bugger. No drama, no demons. My journey is typically 5 steps forward and 1 or 2 steps back.

On the 5th August I had my stent removed. I won't bore you with the issues of having a stent in your water-works. Suffice to say that it is such a powerful irritant that many feel the urge to pee every 20-30 minutes. No fun. I can now walk the dog without having to look for the nearest loo (or bush).

Today, I smile and laugh much more than I have done over the last couple of years. Life is on the up and my demons are on the down. They are almost non-existent.

Maybe, just maybe, Superman will return.