Don’t Press The Orange Button

There’s that moment at the end of Charlie and the Chocolate Factory when Willy Wonka presses a button in the Great Glass Elevator that he’s never pressed before.  The button, in the book at least, is labelled “Up and Out” and it sends the Elevator through the roof of the Wonka factory and into the wild blue yonder.  There are two things in common with Dahl’s scene and a stem cell transplant: You get some buttons to press and there’s an awful lot of “up and out”, but that usually happens just after mealtime or when they’ve just administered vancomycin – a lethal antibiotic that turns your insides to liquid and can make you hallucinate.  Sadly, I only endured the former and never got to enjoy watching a Roman Legion marching through the ward or imagining that Palace had won the Champions League.

I’ve spoken to a few people over the years who have been through a stem cell transplant and their experiences have varied widely.  I know one lady who nearly died during the procedure and was only saved by a resourceful and quick-witted consultant and I’ve spoken to other people who’ve breezed their way through it.  My experience was worse than some, but better than many others.  It was, however, sufficiently harrowing that I anticipate my next one, which is scheduled for the Autumn, with a certain amount of dread.  I would assume that’s only natural.  Were I looking forward to it then beating cancer wouldn’t be my only problem as I’d presumably have lost my marbles as well.

There are a few things to look forward to.  I set a personal best of 24 days in hospital for the last one, so I’m aiming to beat that.  If I survive to day 25 I’m sure the medical staff will join me for a small celebration.  The best way to describe how dire I felt at the lowest ebb was the time I soiled the bed and felt not the merest iota of embarrassment.  My only thought was, “Right, I suppose I have to move now”.  Even then I was in two minds.  Laying in my own crap was much less effort than getting vertical, cleaning myself off and changing into fresh pyjamas.

In fact, embarrassment, reserve or that desire not to create a fuss – let’s call it “Essential Britishness” proved to be, if not almost fatal, then at least pretty dangerous.  The “salvage chemo”, which was administered over 5 days, is designed to destroy as much of the immune system as it can without killing the patient.  The result, for me, was wave after wave of what felt like Biblical plagues with one side effect being a very raw digestive tract.  For a few days I was fed through a tube, which was great as it took the stress out of eating, an exercise usually followed by throwing up a few minutes later.  I knew I had to keep trying to eat to help my body to fight off infection, but eating was an ordeal.  Hospital food is pretty bad at the best of times, but at the worst…well stick a tube down my nose and feed me that way please doc.  The problem was that after they’d wheeled in the vancomycin one evening I was sick (par for the course) so violently that I managed to throw up my feeding tube along with everything else in my stomach.

Now, there aren’t as many buttons in a standard hospital room as there were in Willy Wonka’s lift, but you do get a bit of a choice.  As I sweated, gripped the cold porcelain sink and choked on the tube that should have been in my stomach, but was now hanging out of my mouth I was faced with a stark choice: Press the standard orange call button and wait for a few minutes for a passing nurse to turn up at his or her leisure, or press the red emergency button and wait for the cavalry.  For a few seconds I actually had the thought, “Oh, I don’t want to be any trouble”, before coming to my senses and pushing the red emergency button…I had a whole team of people in my room within seconds.  Cancer didn’t kill me that time, but politeness almost did.

Back in the present we are on cycle 5 out of 9 of the Nivolumab trial and it’s been pretty good so far.  In fact, I’m a little worried that I’ll turn up for the stem cell transplant feeling out of practice.  I have hair, my skin isn’t grey, my tastebuds are almost totally unaffected and I’m not 2 stone overweight.  In fact, there’s a slight hint of disappointment in people’s voices when they see me and say, “well, you’re looking well”.  With a bit of luck it’s working, but we won’t know until after the CT scan in a couple of weeks time…

3 thoughts on “Don’t Press The Orange Button

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