On the eve of cycle three, and following a torturous last 2 weeks, I am currently sat here feeling, well pretty good actually.
The week off from chemotherapy is like being released from some twisted torture regime, being waterboarded continually then suddenly the cell door opens and you have a brief foray into the daylight.
For us we try to cram in as much ‘normal living’ as we can, I say cram in as in fact the week off isn’t in reality a full week. In real terms you don’t suddenly wake up the day after cessation of treatment and feel ‘chipper’ , the reality is that it is (currently) a couple of days before the ‘Tigger’ in me emerges from the darkness. As we get deeper into the treatment the unfortunate reality will mean that even on the week off I will still be fatigued and the likelihood of any ‘activity’ other than base line ‘looking after myself’ will be few and far between. I liken it to a rainy Wimbledon championships, where the covers remain on the court for the majority of play, ever so briefly they are removed to allow for a couple of sets before the rain clouds take over again.
You may be familiar with the term ‘chemo fog’ (cancer sufferers will be ) it is an expression that is used to describe the effect that certain chemotherapies have on the brain. It’s not universal it terms of its application, indeed some people are not affected, but many are. I fall into this category.
I suppose the easiest way to describe it is an obfuscation of the normal ability to think. Hold on Simon you arse , that’s not an easy way to describe it , stop using big words. Lets try again in normal speak..
For me chemo fog is the suspension of normal logical and rational thinking, being replaced with irrational and conspiratorial thoughts. Mmm its difficult to simplify it to be honest, but hopefully you get my drift. In the last couple of weeks I have though/uttered the following which demonstrate the explanation;
Thought – “They (medical professionals) are hiding something from me, they are all lying”
Spoken – “I’m decaying from the inside out”
Thought – “The cancer is rampaging through my body like some unstoppable rebel force” (nod to Star Wars there)
Spoken – “I can’t do this anymore, I want to throw in the towel”
Its draining, not just for me but for Ali as well. You go over the same old ground, the same affirming conversations that whilst I’m in the fog get largely ignored or argued against. So strong are the mind games that I have placed around the house several ‘affirmation statements’ that I challenge the ‘fogged’ me with when my mind is trying to trip me up.
As of today I am fully prepared for cycle three. Mentally good , physically good (I think…) . As the saying goes ‘bring it on’.
Once again during my week off I reengaged with work activity, this is beneficial for my recovery for a number of reasons, its gives me a sence of normality, feeling of worth, and takes my mind off the ongoing treatment with some fixed objectives to achieve.
I wont go into the detail of the location or the organisation but lets suffice to say it was for some ‘statutory obligations’ that I had to travel away this week. The location and timing prompted a very early start, up at 5 o clock and on the road at 5:30.
The first ‘schoolboy’ error of the day was taking Loperimide at 5 in the morning. Sound rationale on my part – ‘slow down the output of Little Simon during the journey’ , good shout, however when you squeeze the balloon at one end it tends to bellow out at the other end. In this instance further on during the day…
I have grown accustomed to living with “Little Simon’ and his behavioural characteristics amongst my own colleagues and teams , however this day did prompt my exposure to people outside of my comfort zone, and very much the self consciousness of having a stoma.
Let’s get this out there straight away, I HAVE A MANBAG, I HAD A MANBAG BEFORE I HAD A STOMA, I LIKE MY MANBAG, GET OVER IT,…. there its out there. However not only do I carry around a manbag, I also have to carry around a small army of ‘logistical supplies’ (for a day away 3 bottles of Lucozade sport, sandwiches,crisps, various sugary stodge). When most of my fellow ‘suits’ pitch up with the ubiquitous notebook and Mont Blanc pen I pitch up with a man bag and carrier bag full of ‘snacks’ like some schoolboy on a day trip to Whipsnade Zoo packed off in the morning by his mum. Whatever, get over it boys.
One of my personal values in life from a work perspective is belive in what you do, be passionate about what you do. If you don’t believe in it or are not passionate about it get out of it.
The first speaker of the day certainly opined with my values, not only was he passionate about the subject, you could tell he believed in it, he spoke with conviction, he conveyed a sence of professionalism and achieved the objective of any form of communication which is ‘the transfer of meaning’. I was enjoying this, debate and narrative discussion are when I come into my own, of course there was the usual ‘grandstanding’ and moronic questions emanating from the floor but the speaker handled this dutifully with suitable aplomb without alienating the individuals despite them displaying the highest level of ‘mupperty’ .
After a brief coffee break and an assessment by me on the ‘levels’ within ‘Little Simon’ session 2 commenced.
Speaker two entered the room and without any form of engagement or acknowledgement of the audience went over to the lap top to set up his presentation. This was not a good start, the pinprick silence in the room was only punctuated by the occasional nervous cough filing the otherwise dead air
Using the lectern as an emotional crutch he tapped the mike – “Ummmm Im going to be talking to you about …” what! what! who starts a conversation let alone a presentation with “Ummmmm”.
Stood in front of us was a middle aged ‘beige’ bored individual. What followed was the most constipated, verbose delivery I have ever had the misfortune to witness. With a backdrop of a Powerpoint presentation that broke every rule in the presentation handbook the speaker spoke every torturous line of the presentation verbatim, never moving from the script, without an ounce of humility ,expression or personality.
Around the room necks strained forward, eyes squinting to try to read the miniscule text on the screen. A complete antithesis to the previous speaker the conveyance of this message was lost, so much so that I began to develop a growing disdain towards the speaker.
He was disrespectful, continually glancing at his watch during the death by power point display I began to look around the room. Varying displays of stifled yawns, discrete checking of emails and doodling were now breaking out like random wild fires.
At one point the presenter looked up from his script, why I don’t know , but he stared aimlessly into the audience, he was soulless , having that look of a man who has been in loveless marriage for 40 years with ‘Please shoot me’ written all over his face.
If I had a gun I would have done. In front of us was a man who hates what he does.
My anger was brewing inside, he had wasted mine and he other recipients in the rooms time. My seething anger was manifesting itself in my abdominal system which up until this point had been quiet A growing ‘gripey’ pain was brewing within and suddenly I was fearful of how this would manifest itself through little Simon.
As ‘Mr Dead’ leant over to do something on the laptop I adjusted my position in the chair from an arms and legs crossed position to a leaning forward head between legs stance.
This rapid change in position was the incentive that my intestine needed to expel the air and effluent that had been stifled all morning with the Loperimide.
In unison with my shift in position was a massive elongated ‘fart’ from Little Simon. Like the last rights of a bagpipe a prolonged ‘bottom E flat’ note emanated from my side tailoring off with a series of semibreves prolonging my slow death by embarrassment.
In the whisper quite environment of the room it was bloody obvious that everyone had heard it. Great, thank you very much, I thought. My embarrassment is now complete.
Without breaking position at all I turned my head to the guy to my left, “Its my Stoma” I said, “Right” he said, Whether that soothed my embarrassment is debatable.
We broke for coffee again and I took the opportunity to empty Little Simon who by now was rather full.
LIke that scene from Fawlty Towers where Basil beats the car with a branch I was stood in the cubicle cussing Little Simon, once again he has let me down . But you little bugger I will get the last laugh.. come October you will be no more, we will see who is laughing then.