Fighting Back? Nivolumab does the trick.

The broadcaster and author Danny Baker never bought into the idea that you battle cancer, “You are the battleground. You are the Normandy Beach. You are the Hastings in 1066. You don’t fight it. It’s nice if that helps you. You don’t battle it. You’re helpless. Science is fighting it”.  Of course, it’s pretty easy to see where he’s coming from.  Without the drugs and physicians the outlook would have been bleak indeed and there are plenty of cancer sufferers and cancer survivors who dislike the metaphor that treatment is a ‘battle’.  What does that say about the thousands of people who don’t make it?  Didn’t they fight hard enough?

But I don’t agree with Danny Baker and it’s not just because he has an unfortunate taste in football teams.  His quote seems to suggest that the patient is entirely passive, that you lay there and let the doctors do their stuff.  I think that’s unhelpful.  A dialogue with your medical team is essential, it can make fundamental differences to the treatment you’re given and the way that it’s administered.  You certainly shouldn’t feel ‘helpless’.  However, I never entirely bought the pitched ‘battle’ idea either as it suggests a highly strung, taut, stressful approach to treatment, when it’s important to stay as relaxed and patient as possible.  People who know me well will tell you that being ‘patient’ and ‘relaxed’ aren’t two of my strong points.

If there are pugilistic images I have kept playing in my mind over the years, in relation to chemo, they have been of Muhammad  Ali’s fight with George Foreman – the Rumble in the Jungle.  Ali famously soaked up 7 rounds of punishment before coming out swinging in the 8th to regain his heavyweight title.  That’s how I feel about cancer.  You don’t fight it, you outlast it, you let it blow itself out and come out swinging.  It’s more siege than open warfare.

And yet, a day after receiving a really encouraging scan result, it was Churchill’s words after the defeat of Rommel in North Africa that sprung to mind, so maybe there are times when only a quotation borne out of a military victory will do:

“This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

After the multiple shocks of realising that I might be ill again, the blood test results, the scans, the diagnosis and the commencement of chemotherapy to hear that the cancer had reduced by 80 percent was the first good news in months and felt like the turning of the tide.  I now have very little of the disease on board and, hopefully, the rest will be mopped up before the stem cell transplant.  So with apologies to my own sense of logic and to Danny Baker, this was my El Alamein.

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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…