Author: Simon (Page 1 of 6)

Cycle 3 – ‘God save the Queen’

My my my, what a topsy turvy few days.

To be fair there have been some real pleasurable high points. Like most people (not everyone) we were caught up in the general feel good factor of the Royal Wedding. I’m going to declare my hand as a royalist here, not everyone agrees with the concept of a monarchy but I do.

Anyway the opportunity to have a focus on the day for entertaining took my mind away from the effects of the ongoing chemotherapy.

With the family around for Buck’s Fizz at breakfast and a BBQ at lunch the day was simply divine.

The sun shone and we all felt good about life.

Towards the afternoon I started to feel, well decidedly jaded, maybe it was the 5 glasses of Bucks Fizz? Mmmmmm spread or across the day this was highly unlikely.

As I laid on the bed I began to ache in my joints and was suddenly aware of a raging sore throat.

Clearly I had come back from last weeks work excursion with more than I had intended.

Bugger. This is not good. The last thing you need when on chemotherapy is any form of ‘bug’ you simply have no means to fight it. It also sends the medical teams into a tailspin and can result in you being admitted to hospital.

By Sunday I was seriously going down hill, the usual cold related symptoms but add that to the general malaise of chemotherapy and trust me you feel like you are dying. Nurse Cowls regularly took my temperature as this would decide whether I would have to be admitted, thankfully this was never enacted.

By Tuesday and with no improvement I reluctantly went to see the GP, despite my condition I try not to go to the doctors unless I absolutely have to. Following a thorough examination and extensive listening to my chest I was prescribed background antibiotics ‘for top cover’ .

More tablets to take every day, as if I don’t have enough already…

Inevitably it did go to my chest, and at the time of writing this blog I am still annoyingly coughing merrily away as Mrs C is trying to concentrate whilst working on her laptop.

I (we) we’re concerned, if I’m honest. At that height of my ‘unwellness’ I could not summon the energy to climb the stairs. I sat at the bottom like some child on the naughty step not knowing whether to laugh or cry.

By Thursday I was beginning to feel human again, this ain’t beating me folks, I can be a right stubborn sod when I choose to. Allowing a suitable time between morning chemo and suitable fluid intake I went out on my bike.

It is a challenge exercising , the depletion of red blood cells means the conversion of oxygen into the blood steam is less efficient, but the therapeutic benefits of being out on the moors in the sunshine far out-ways this medical challenge. It was only 6 miles, not exactly the Tour de France but for me it was a sense of achievement.

On returning home I laid on the settee in my cycling gear. Just a breather I thought…

2 hours later I woke up 😮

What a difference 4 days make

Cycle 3 – Day ‘0’ “Play is suspended for today”

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.

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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.

 

 

 

Cycle 2 Day 2 – ‘Im Dreaming of a White Christmas’

So thats the first cycle in the bag, officially 1/8 of the way through the treatment plan. To be honest, it had its moment but it wasn’t too bad. If they are all like that then things will be bearable (wishful thinking on my part).

The gods were certainly shining on me (literally) as my week off coincided with our early  (and short lived) summer. I made the most of the unfettered sunshine and caught up on all those jobs around the garden that have been waiting for me over the winter months.

Theres also something pleasing  about ‘the first cut’ of the lawn as it heralds the move into spring, and this year was no different. Taking out the mower from its winter hibernation I opened the choke, and with one pull of the cord the Honda  4 stroke roared into life. Being an OCD type of person stripes in the lawn are of course obligatory, and it was during the mowing of the  hypnotising up and down stripes that I recalled the last time I had treatment during the summer months. During this time  mowing the lawn I was so fatigued that I could only manage 1 or 2 ‘up and downs’ before having to go inside for a lay down and a rest. As ever I wasn’t  going to be beaten and after many hours the lawns were mown.

An impromptu BBQ  added to a fantastic week, just sitting outside in the evening sun with the birds tweeting away was just divine.

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As I came inside to retrieve the marinated chicken fillets from the fridge on opening the door there were 3 bottles of Peroni beer staring at me invitingly.

I paused momentarily with my hand hovered over the cold inviting bottle. In my head I was replaying the ‘user instructions for Little Simon’  “Avoid beer and other hop related drinks as severe wind and fluid output will result”……

Stuff it! ‘Publish and be damned’ to steal a well used phrase. It tasted so good, Moroccan chicken and chilled Peroni were perfect partners, the first bottle didn’t really touch the sides, and to be honest the lid was popped off the second bottle faster than you could say ‘you’ll regret it’….

And indeed I did regret it.

Up most of the night I crouched over the toilet venting either ‘beer hop gas’  or releasing fermented beer juice from Little Simon. Oh well, it was worth it.


Also last week I  finished one of the discrete work projects that I have been working on in-between cycles and drove to the site near Bath to run-through the project with the team at the location.

It was a fantastic drive up across the moors, and even the normally monotonous and depressing trip up the M5 took on a more pleasing feel in the cloudless sky.

I had even sorted my ‘playlist’ from the iPod to listen to on the drive up. All was going well , and as I drove through the security gate “London Calling’ by the Clash was belting out at full volume. As I lowered my window to show my security pass  the iPod decided (as it randomly does occasionally) to default to “Now Thats what I Call Christmas” , moreover in this instance ‘Im Dreaming a White Christmas’ by good ‘ol’ Bing himself.

With both hands being occupied with steering wheel and pass respectively I had no opportunity to mute or switch to the radio. Embarrassingly as the security guard leant in to tell me there was ‘restricted parking’ he was battling against “Just like the ones we used to know”. He stopped mid flow, and in  a fit of embarrassment I swiftly did up the  window and fled  through the gate narrowly avoiding a major security breach in doing so.

At any other time I would be dwelling on the embarrassment of this for many minutes, but not today, oh no , the sun was shining I was feeling good,  and on top form!

Neither was I phased when, presenting at the front of the conference room facing my  team Little Simon decided to let out the most enormous ‘wet fart’ just as the point I was using a silent pause in my dialogue to gain maximum impact. Oh it certainly had an impact, just not the one I set out to achieve.

In a mischievous way I love it seeing the reaction from people when Little Simon ‘performs’ during conversation. It ranges from;

  • Pretending nothing has happened
  • Looking embarrassed
  • Stifling a giggle
  • Laughing out loud

I am more concerned for other peoples embarrassment than mine, frankly it doesn’t bother me at all, although I find the best way to ‘defuse’ the situation with a  humourus tone is to look accusingly at the other person and say “Was that you?”

 

Tomorrow – ‘Houston we have a problem’….

 

 

Cycle 1 – Day 15 ‘Sweet as the moment the pod went pop!’

Whoop whoop! That’s cycle 1 in the bag, yes indeed.

14 days on the trot of eating porridge at exactly 08:00 and taking 5 500mg chemo tablets ceased (for a week at least) this morning. As a treat I had a lay in… until ten past eight. Come on, I’m a busy man there’s lots to do when you’re not taking chemo.

Side effects are , well , beginning to kick in but that’s to be expected. Within 45 minutes of taking the tablets I’m ‘zonko’ on the settee. Facial flushing, headache, and blocked nose. All very strange really, as after an hour of this it passes and I’m back to my usual self.

Of course it’s too early for fatigue to set in, but my guess is that this will hit with a vengeance around cycle 4. It’s a weird sort of tiredness with chemotherapy , you are not tired per se, but have this unquenching fatigue that drains you in the day and keeps you awake at night. But let’s not worry about that yet Mr C.

Little Simon has been very well behaved throughout the treatment thus far.

We’ve got mutual respect for each other, basic ground rules that we both live by, with the understanding that ‘you don’t tread on my manor, and I don’t tread on yours’ its something of a symbiotic relationship between us, a bit like the tick on the back of the rhinoceros. Not that I’m overweight like a rhinoceros, no, more of a hippo.

As if to remind me of the ‘rules’ little ‘S’ gave me a stark reminder this week of what happens when you stray from the agreed guidelines.

For some reason this week I really fancied thick cut ham off the bone, with chunky chips and a lovely free range egg (and for me a large serving of petit pois). This latter addition was to have dire consequences.

Half way through dinner I suddenly realised that unlike the rest of the meal I was ‘hoovering’ up the peas on my fork and commuting them to my oesophagus almost bypassing my mouth completely. Not even a passing attempt of any form of chewing. Oh shit’ I thought, ‘that’s not good’ .

The perils of this flagrant act are well publicised and taught. ‘Thou shalt chew thine food” is engrained into every ostomates head. It’s bad enough running the gauntlet of peas let alone non chewed peas.

There was nothing I could do about it that night, I would sleep on it and ‘see what happened’

The next day was bag change day, with nothing untoward I laid out the requisite paraphernalia ready for the task:

  • Stoma bag
  • Waste bag
  • 3 wipes (cleaning)
  • 3 wipes (drying)
  • Stoma talk

Taking up

My position at the sink commenced to remove the old bag, so far so good. At the point I was ‘unfettered’ a strange sensation began to emanate from Little Simon. You see when he misbehaves it, well, tickles . As I looked down at the little blighter all of a sudden (and with a brief retraction of him) out popped a perfectly formed petit pois. Gracefully dropping in the sink it was followed by another, and another, and another.

By now I was panicking, not just because the sink was beginning to fill with partially digested petit pois but what else was lurking behind, backed up so to speak?.

This now called for emergency measures. Covering Little Simon with one of the ‘cleaning’ cloths I moved across the room to the toilet…

“Emergency procedure in the event of a blockage. With both handseither side of the stoma gently depress the abdomen”

Not knowing what exactly to expect I did as I was taught, both hands surrounding Little Simon gently pressing in a softer version of the Heinrich manoeuvre I squeezed…

Like popping some abdominal ‘zit’ there was instant relief of pressure and ‘Pop” followed by a steady stream of petit pois.

After 5 minutes of attendance I was sure that all remaining peas had been exhumed, I fitted the new bag and begrudgingly apologised to Little Simon

‘Sorry mate, I…. um.. didn’t mean to upset you’

We are best buddies again. 😎

Cycle 1 – Day 11 “The Singing Detective’

Hello!

Talk about deserting the battlefield, what is the saying? “When the going gets tough, the tough get going” thats been me I’m afraid, truth being I haven’t been ‘A1 top of my game’ for the last week (hardly surprising really as I am building up as nice reservoir of lovely chemo in me), and, if theres one thing I hate its self pity. Boy have I been wallowing in it for the last week. Like some hippopotamus in a murky Kenyan lake I too have been truly wallowing in the murkiness of dark depression and self pity. No-one wants to read that let alone me write it. So to be kind to both of us I absented myself from the battelfield.

Its also been a time for reflection and anxiety, reflection on who I am, what I have achieved, and what makes me tick, what makes me ‘whole’.

Anxiety with regards to the ongoing treatment, the physical challenges that poses and what the future holds.

During the reflection period I pondered about the sort of person that I am, of course, like Mary Poppins Im ‘Practically perfect in every way’ , but within that statement (which is not an absolute) there is room for improvement, and like most people I have numerous shortcomings. Whilst not being the most heinous of shortcomings one of my ‘blind spots’ is the objective nature of my way of thinking, a definite aid when problem solving and solutioneering but stifling in terms of creativity and free thinking. I listen with envy when people talk about ‘their favourite literary novel’, or how when on holiday they ‘take 3 or 4 good books’ and totally immerse themselves in them whilst relaxing on the beach or on the deck of a boat. This is not me, on the Darwinian scale of literary evolution I am sat firmly at Amoeba. Ask me to name the full works of Shakespear and I would be kicking the gravel after Macbeth, ask me about the role of ‘Russian Foreign Minister Molatov in the  Yelta conference in 1943’ and I can regale modern world political machinations up to the current day. I just cope better with tangible things that I can make sense of more than the visualisation of fiction.

It was during this self flagellation of my character that I recalled in my mind that last time I actually enjoyed and engrossed myself in a good novel. It was in Mr Dare’s (Dan) English lesson, and the book was ‘Cider with Rosie’ by Laurie Lee. Part autobiographical it is an account of Lee’s childhood in Gloucestershire in the period after the second world war. For a boy such as myself on the edge of puberty with an unquenting appetite for knowledge of the world this book managed to tap into something within me that was both engaging and  gave me a sense of enjoyment  in its reading. It also introduced in  very gentle manner the concept of something else that was to be the launchpad for another experience in the rich tapestry of life…. girls.

Alas this brief foray into the litteray world was to be my last, I have never (that is not to say I haven’t tried) been totally engrossed, totally immersed in a literary novel since.

This sense making objectivity ‘blight’ also means I have developed a complete bemusement of  the concept of ‘musicals’. ‘Man chats to woman one minute then breaks into song, subsequently going back to chatting to her, as if nothing happened’. I just don’t see the point of them. Im not knocking anyone that does, and indeed I can appreciate that there are some ‘very fine’ musicals out there, its just not my bag.

Hold on though, during my deep reflection I did recall how I enjoyed Dennis Potter’s ‘Singing Detective’  – a highly successful musical drama that was shown on BBC2 in the late 80’s. Staring Michael Gambon (Dumbledore)  and Jim Carter (Mr Carson from Downton Abbey) it was a psychedelic roller coaster of a production where the main character Phillip Marlow hallucinates various scenes many of which surrounded his childhood after the war. The resemblance in many instances with Cider with Rosie is uncanny , so it is no surprise that there was an addictive appeal for me.

The author of the ‘The Singing Detective’ and his other major success ‘Pennies from Heaven’ was the playwright Dennis Potter. I began to take and interest in Potter mainly because of the honesty in the way he wrote and spoke, he was non conformist, and I loved the way he ‘shunned’ the norms of the literary gene pool that was around at the time.

In those days taking an interest into any subject (particularly the visual mediums) was more challenging than it is in todays internet driven world where interviews and photographs are available within a few clicks. Nevertheless I would hunt down every opportunity to see Potter’s  work on either ‘The South Bank show’ or some obscure ‘arty’ show on BBC2.

Out of the blue at the start of 1994 it was announced that Potter was terminally ill, I mean very terminally ill, I mean like weeks to live. Within days of this news being relayed to the general public it was announced that he was to give his ‘last interview’ to Melvin Bragg (he of South Bank fame). Now at this stage of my life death was a distant ‘thing’ the happened to ‘old people’, yes I had experienced the loss of my grandparents, but, well, they were ‘old’, and thats what happens when you get older, that is the order of life.

I had no reason to dwell, I was aware of my mortality, but I had a young wife and family and was too busy living to worry about anything else, especially ‘death’. I was nervous about what to expect, ‘Iv never seen anyone that is , well…dying’, ‘What do people that have weeks to live look like?’

Almost with a sense of voyeuristic intrepidation I sat down to watch. People often say that terminally ill people bear there fate bravely, as did  Dennis Potter, in front of a nationwide television audience.

Filmed simply in a empty studio with just Potter and Bragg facing each other in two comfortable chairs (Akin to a classic Parkinson interview of the 70’s) Potter talked about the prospect of his own death with equanimity and candour which was simply humbling to watch. Almost chain smoking throughout, and swigging white wine with liquid morphine Potter talked about his childhood in the Forest of Dean, and without malice or fear about the advanced pancreatic and liver cancer for which there was no hope of treatment let alone a cure that would take his life in a matter of weeks.

The interview has subsequently gone on to be been defined by a section where Potter describes how he has now grown to appreciate  living in the now;

“Below my window in Ross on Wye, when I’m working in Ross is a plum tree, it looks like apple blossom but it’s white, and looking at it, instead of saying “Oh that’s nice blossom” … last week looking at it through the window when I’m writing, I see it is the whitest, frothiest, blossomest blossom that there ever could be, and I can see it. Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous, and if people could see that, you know. There’s no way of telling you; you have to experience it, but the glory of it, if you like, the comfort of it”

This wondrous, profound sentence that was brought to life so well by Potter really made me think, think about my life in a way that I had hitherto not done so. It triggered that short lived rush that we all get when  we hear of a  ‘death’ –   you know the ones where the usual platitudes are spewed out  – “You should appreciate what you’ve got….. Live for today… You never know whats around the corner” et al , we all know them.

But more than that, his words stayed with me, parked in the deepest recesses of my memory banks with the curator occasionally dusting them off but always putting them into the room marked ‘not required at this stage’.

Suddenly though the curator has removed them from the room and is attempting to put them centre stage , with a bloody big spot light on them (please lets be clear , this is not a thinly veiled attempt of me telling you Im terminal, not yet anyway)

But when the doomsday cancer clock hands  starts rotating your do begin to view life in a totally different way. My hierarchy of fear begins and ends with death, everything else is a walk in the park. Certain things that meant something to me previously now no longer do so. The false profits that once I prayed at the alter to worship have been exorcised (oh my God he’s gone all religious,  He’s going to tell us he’s discovered God any minute now), fear not dear friend, I’m  still the scurrilous rogue that I always was, just a more thoughtful and reflective one.

This week the sun shone (finally) and in a Potter-esk way I looked up at the sky and marvelled at its ‘blue-ness’  I lapped it up like a cat with milk in a bowl enjoying every drop.

I have learnt to live life in the present tense, for a man that thrives on certainty, forward planning and control, that is , well, different.

But you know, it’s actually quite cathartic, you should try it

TTFN

Cycle 1 – Day1 – ‘The first steps’

So here we are again, it’s like I’ve never been away.

At dead on 8 am this morning I took my first dose of Capecitabine (5 x 500mg). Always the same routine – porridge, cup of tea then tablets. For an added twist of excitement I also take some additional medication of Omeprazole (gastric reflux) and Loperamide (Anti Diarrhoeal).

Knowing what to expect, as soon as the last tablet was swallowed I made best speed upstairs to wash, shave and get dressed to await the impeding ‘hit’.

Thankfully, and not unexpectedly the ‘hit’ did not happen. After all this was the first cycle, I should have remembered that the first lot of 5 is generally a ‘free pass’.

The test today was always going to be ‘Little Simon’ , the memory from last time (with intact and functioning bottom) of orange liquid diarrhoea is still firmly imprinted on my brain.

Thankfully the Loperamide did the trick today and , feeling brave (or was it reckless) we decided to venture out in the car, complete with all the usual accompaniments that is the norm for me now: spare stoma bag, wipes, stoma talk, poo bag, energy drinks.

The requirement to drink lots of water throughout the day is challenging, and as you will know water is ‘Verboten’ for me. Instead my trusty ‘Lucozade sport’ has not been far from my side all day.i will make up the 2 litres some how

Before long it’s time for me to think about dinner and taking the second batch of tablets. I am required to take them not less than 10 hours from the previous batch so dinner at 6 or 7 is the order of the day.

The second batch of chemo went down well, without any of my usual urging and gagging that ordinarily follows me taking any form of tablet.

This time I was not to be relieved of receiving the ‘hit’….

40 minutes from consumption I am laid out on the settee. The temporary side effects are, well, ‘weird’:

  • Mild headache
  • Blocked nose
  • Flushed head and neck
  • Rapid onset malaise
  • Abdominal pain

I say temporary as they are just that, generally these side effects disappear as quickly as they arrive, and within an hour my monosyllabic grunts are replaced by my normal bubbly conversation.

Of course, these mere pretenders are just a foretaste of the enduring side effects that are yet to come, yes indeed, this is playing at it currently folks.

We will tick these off like side effect bingo over the coming months, introducing a new ailment for your delectation as we get deeper and deeper into the treatment.

Just to give you a brief ‘trailer’ of what’s coming take a peak at side effect No. 1 – Palmer Planter syndrome

This bad boy causes the fingers and toes to go red and shed their skin whilst giving the effect of being permanently ‘par boiled’

Ooooh, I tell you, I can’t wait! ☺

‘The day of reckoning’

I’ve slept on the blog for 24hrs, not because the outcome was bad (by my standards) but moreover as I wanted to reflect on everything that was said to us and clarify both in my own head and with MrsC that I hadn’t ‘twisted’ anything in my head, and as usual applied my own filtered interpretation.

Yesterday the hours before seeing the oncologist were simply harrowing, we both went ‘through the motions’ and attempted to carry on as normal, although the spectre of what was looming was never far away in our minds.

Miraculously there was a brief respite, when for a whole hour over a pub lunch we forgot everything , we laughed and managed to have a conversation about something other than our current predicament.

The lottery of parking availability at the hospital fell favourably for us, so much so that we had an entire hour to kill. I used this time wisely and elected to visit Macmillan and spend some time with one of the support team , almost akin to getting last minute tips before a ‘medical viva’ I went through a sequential list of possible questions with supporting ‘follow up’ questions should the responses go a particular way.

The tea and biscuits are always welcome and provided me an opportunity to administer a lorazepam to combat my anxiety, which at this point was nicely beginning to ratchet up a few notches.

We eventually walked through the building and down to the oncology department. I had managed to erase all thoughts of this from my conscious but going through the door and hearing people being called for radiotherapy bought it all back.

Amazingly the appointments were running to time, and bang on 2 o clock we were called into the consulting room. Pleasingly the support nurse recognised us from last time and we sat in the consulting room chatting whilst we waited for the consultant to appear with a massive pile of notes.

As he walked in I avidly tried to evaluate his demeanour, looking for any ‘weak signals’ of indeed any ‘strong signals’. I stood up and thrust out my hand.

“Don’t take this the wrong way, I’m not pleased to see you” I said as he beamed a big smile at me.

‘He’s smiling….’ it can’t be that bad then can it? I mean surely if things were really dire he wouldn’t look so happy would he?. I took this as an immediate good sign.

“We find ourselves in unusual territory” he said as he flicked through my notes from Basingstoke.

‘What the hell does that mean?’ – now I begin to panic, the initial rush of euphoria is quickly dwindling away.

In an effort to seize the initiative on the conversation I got him to recap on the surgery and the resultant histology, giving me the structure my brain needs to assimilate the information.

Hanging on EVERY word we listened intently as he talked through what he knows, and what he thought.

I bullet pointed the key points in my head:

  • Surgery was successful
  • Got it all out
  • Nothing in any of the additional ‘stuff’ removed
  • Found it in some of the lymph nodes

‘Lymph nodes’, bugger, damn, shit. It was all going swimmingly well until that point. But you know, I expected that, it was no surprise, my reoccurrence was in a lymph node, if there weren’t cells in the adjacent node I would have been surprised.

He didn’t change his demeanour at this point, there was no drawing of breath or somber tones.

Again, I saw this as a positive (was this wishful thinking on my part?)

The solution was again going to be chemotherapy,

“On balance I think this would be the right thing” it was almost as if it was debatable, debatable as to whether there was any point or debatable as to whether it was necessary? , we had to know the answer to this. Thankfully it was the latter.

Attention turned to the ‘regime’

“Your Liver And bone marrow took a pounding last time with Oxaliplatin didn’t they?”

“We don’t need to give you that again, when it’s just cells like this Capacitabine is the most effective”

The wave of euphoria that previously flowed through me once again returned. Oxaliplatin (like many chemo infusions) is the medical equivalent of being water boarded, the thought of which just fills me with dread.

The tablets whilst still fairly debilitating after several cycles have less extreme side effects, and mean that I will not get further nerve damage to my fingers and toes (I still have no feeling In my big toes following my first foray into this drug)

I will however experience fatigue, and extreme diarrhoea, as well as ‘the sweats’. I can live with that.

We talked about how this was going to work with ‘Little Simon’ and yes, it makes it slightly more challenging, I will need to closely manage my fluid intake/ outtake, but I’m not the first.

“When do I start?”

“Let’s get Easter out if the way shall we, I mean I want you want to enjoy it”

My concerns that any further delays would adversely affect the outcome were soon dismissed, and this further boosted my confidence in the whole process.

Having exhausted all plausible scenarios and outcomes, and without asking the killer question ‘will this guarantee……’ I signed the consent form on the dotted line, had blood samples taken for my blood and liver status, and took receipt of my first cycle of chemotherapy (as well as anti-sickness and loperimide)

And so for now that is it, until next Thursday the 5th of April at exactly 08:00 when I will take my first set of 5 tablets followed by another 5 at 19:00 the same day.

And that (liver permitting) will be my life for the next 24 weeks.

Piece of cake 😉

‘The day before the oncologist’

Apologies for my absence over the last couple of days, it’s been, well , very difficult.

As the title suggests we have been building up to the day that we have been dreading ever since I came around from the anaesthetic 7 weeks ago. The conversation with the oncologist. I know that many people who are fighting the disease feel the same, and although my personal situation could be worse it is still an anxious period, as there are still some unknowns and complications particularly as I will undertaking chemotherapy with a stoma (little simon).

The outcome of tomorrow will define our lives for the next few months and potentially for ever.

Being analytical (which sometimes I wish I wasn’t) I have spent many sleepless nights in the last few weeks wondering ‘how is this going to work?’ .

By that I mean if I am on the same ‘regime’ (oxaliplatin infusion & Capacitabin tablets) how will Little Simon affect the success rate.

For one the chemotherapy causes virulent diarrhoea, bad enough with an intact and in place colon, take that away and discharging ‘water’ through my side is going to seriously cause me dehydration problems.

Secondly (this is my analytical brain at work) I already know that absorption is an issue with my stomach/ilium, hence the restricted diet eat al.

This also extends into certain tablets that I can/ cannot take as they will not be absorbed during the brief passage through my system. Mmmmmm, this stresses me greatly.

You see ‘cappy’ aren’t exactly small (the above picture represents a complete cycle) The first time I had them I didn’t know if I had to swallow them or stick them up my backside. Now you see where I’m coming from, ‘they don’t dissolve, QED they won’t be effective’ let alone getting wedged in little Simon. This along with other morbid thoughts regarding my mortality have conspired to take me to a very dark place.

No end of ‘keeping busy, cycling, or otherwise active’ has been able to lift me through this enveloping fog of depressive anxiety. Despite being surrounded by loving support from friends and family it can at times be a very lonely place.

Once again I have dipped into the superb support provided by MacMillan both from their clinical expertise and the psychological support they are able to provide, but ultimately they can’t make it right, and right now that’s all I want. I want someone to say “it’s all going to be ok”, but they can’t.

We hope that after tomorrow we will know the direction we are going. I like to have something to aim towards, that may be physical recovery, or in the case of chemotherapy it’s a target date when you complete the cycles.

The blog here on in will reset the counter, and will reflect my next challenge namely chemotherapy ‘Cycle 1 day x’ and so on and so forth. It promises to be different to the physical recovery, tougher, much much tougher. My resolve will be tested to the absolute max.

I hope that you choose to stay with me, your thoughts and good wishes are like the metaphorical 12th man in the football pitch.

Here we go…

Day 51 – ‘A sense of normality’

Yesterday was quite a monumental day in terms of my recovery, for the first time in 7 weeks I ventured (albeit for one day) back into the work environment.

Ali and I debated this long and hard, and whilst it does not represent a full time return it was nevertheless a major event for me, if nothing else as it represented a symbolic return to normality (pending commencement of chemotherapy)

What I have learnt from last time is that at certain stages during the chemo cycle (generally week 3) there is relative normality in terms of ability, I called these the ‘green weeks’, the others being amber and red. I also learnt that being active both physically and mentally also helps in getting through this torrid time.

My full time role is not one that I can dip in and out of , that just doesn’t help anyone, especially my relief. Discrete project work that is not time barred, but is nevertheless required by the business is something that I can do, and yesterday saw he start if this.

Getting up at 6 o clock was a distinct shock to the system, including Ali who had company at the breakfast table, there was however a sense of pride putting back on the ‘uniform’, something that I have to admit to missing these last few weeks.

Living in the South West effectively means that everywhere is a ‘drive’ it is the acknowledged price we pay for living in a great part of the country. Yesterday’s work commute was no different and was a good 3 hours in the car.

This was the first source of concern by both of us, up to this point the longest I have spent in a car is 40 minutes. If I’m honest I was more concerned about food and fluid intake than the behaviour of Little a Simon, who I was hoping was going to behave.

The second source of concern was the fact that there was to be 3 hours drive at the other end of the day after a day on site. Was I up for it? How fatigued would I be?

One hour into the drive and all good so far, motorway driving is helpful in that respect, in so far as physically it is not very taxing (having an automatic is also helpful).

Around the two hour mark I put my hand down to gauge ‘how full the bilge tank was’, alarmingly the bag was getting close to capacity.

Without panicking I came off the motorway st the next services.

Collecting my fully stocked ‘man bag’ from the back seat of the car I stridently headed for the disabled toilet. Armed with my RADAR key I opened up the door to the facility. I learnt for the first time the passive/ aggressive prejudice you get when using a disabled toilet ‘not with any obvious physical disability’ . The two people stood outside said facility actually stopped talking and stared as I opened the door, you could almost hear the spoken thought of ‘why does he have a key?!’

Undaunted I preceded to ‘do the deed’ inside.

The space afforded inside does allow the spreading out of the various wipes and paraphernalia required to affect a successful emptying. It does not however legislate for the stupidity of the operator……

Obviously up until till this point I have not been wearing a tie, why would I? I mean MrsC & I relaxed the dressing for dinner time many months ago.

Now well versed in the art of stoma emptying I adopted the optimum stance over the toilet and commenced the operation.

Without warning, and as if in slow motion my beautiful spotted silk tie fell forward straight into the flight path of the effluent….

“Nooooooooooooooo”

Startled with incredulity I frantically tried (without the use of a third hand) to double handily clean the bag, seal the bag and carefully quarantine the tie whilst going through my entire repertoire of swear words.

Addressing the staff with a tie covered in excrement doesn’t set the right tone, apart from the fact it is a minor health hazard. A quick re-scrub in the sink was therefore essential if I was to get through the day with my credibility intact.

Thankfully the tie washed out pretty successfully, and in no time at all, the next challenge I faced was drying it.

Casting my gaze around I identified the hot air hand dryer (which due to being in a disabled toilet was mounted at wheelchair height)

A forlorn and tired ‘Warner Howard Air Force’ unit sat to the left of the sink. If ever I wanted a hand dryer to be hot and forceful it was now.

‘God there’s no button, it’s a bloody automatic one’

Crouching down and offering the tie underneath the bottom of the unit it eventually coughed out a feeble stream of COLD air.

How bloody difficult can it be to produce a dryer that actually dries hands.

2 seconds later the feeble stream stopped, adjusting the tie causing it to spark back into life.

This staccato waltz between me and the dryer lasted for a full 12 minutes when eventually the tie had dried sufficiently enough for me to leave the premises without any further stares from the baying masses outside.

The day went well thereafter, I felt I had achieved something, fulfilled that it had been worthwhile.

That evening far from bring fatigued I was still ‘hyper’ from having an enjoyable day.

I need to remember days like these in the forthcoming weeks, the dark periods of chemo when I really need to dig deep.

Day 47 – ‘Getting my hopes up’

If there is one thing that I have learnt from this whole cancer malarkey it is the difference of mindset between that of the ‘surgeons’ and that of the ‘oncologists’.

That is not to diminish the value or skill set of either of them, indeed they are both subject matter experts, extremely skilled and phenomenally talented, but different.

Metaphorically cancer treatment is like the passage of a car through a production line with various things being undertaken in sequence to deliver a successful end product (hopefully). From a clinical perspective this line is represented by a linear line of GP- Consultant- Surgeon – oncologist- CNS nurse and so on and so forth.

The ‘production management’ is performed by the MDT (Multi Disciplinary Team) who decide on the best form of treatment, whatever that may be.

Whilst the overarching driver amongst all of them is the best treatment/ curative options for the patient it is the individual approach to achieving this that is very different amongst the various protagonists in this scenario.

For me the surgeon is the master craftsman, a cross between an artisan butcher and a Swiss watch engineer. Find it, cut it out, piece it back together.

The oncologist well in military parlance they would be the ‘intelegence officers’, dealing with things that ‘lurk in the shadows’ , things that cannot be seen but we know are there, subversively trying to destabilise us and cause us harm.

Between these two protagonist they overcome the enemy, each in their own way providing strategies that defeats and overcomes with ruthless efficiency.

The interplay and symbiotic relationship between these two protagonists is something for which many patients never get to see, but moreover rely on the two players coming together harmoniously to deliver a successful outcome.

It was yesterday that I had a brief conversation with my consultant “we must do a Gastrografin enema” he said.

(This delightfully sounding procedure is required to test the soundness of the truncated bowel and involves pressurising the remaining colon with. Liquid isotope under X-ray whilst establishing if there are any leaks within the abdominal area’ – this procedure is undertaken prior to ileostomy reversal)

This throw away comment immediately got my hopes up, ‘reversal, already’ I though.

But of course the surgeon is thinking about his next role in the process, the chemo bit that’s the oncologist, once the batton is handed over from him again, then yes it will be the gastrografin enema, until that point it’s chemo (which is yet to start).

My next meeting will be with the oncologist who hopefully will have gathered intelligence that tells me the enemy is not advancing any further than we thought, and that he has a particular nerve agent that will stop them in there tracks.

In the mean time, much nail biting

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