Taking off the game face

Today, in the interests of fair reporting and factual accuracy, I’m going to set aside my usual, practiced sunny disposition and unfeasibly optimistic outlook for a moment and have a good winge. I am after all I am a Pom and it is my birthright.

I feel crap. Shite. Buggered and, to use an old Anglo-Saxon medical term, completely and utterly fucked.

I suppose it had to happen sooner or later. I’ve been making light of the situation for months, gloating smugly about “dodging the bullet”, and congratulating myself of how I just keep on going like the Energiser Bunny, while my fellow chemo compatriots fall along the wayside like so many spent mayflies. Only the strong survive, has been my mantra.

So natural justice has been restored, and Redding has got his comeuppance.

About time.

So it’s time to face the truth. At least my current version of the truth – I reserve the right to remodel my reality at short notice. The chemo is getting harder. And it will get harder still. My original working hypothesis was that well, chemo is chemo. The next one will be just like the last. In fact, I told myself it might even get easier as it becomes familiar and routine. This elementary thinking got me successfully through my first three cycles without too much drama and breast-beating.

Recent empirical evidence however has forced me to reconsider this comfortable position, and accept the harsher, tougher reality of Chemo Theory 2.0. That is, that like everything else to do with the wonderful world of cancer, there is a slow but inexorable progression. Chemotherapy has a cumulative and compounding effect.

Each three week treatment cycle, has it’s own story arc, a preordained path which has to be followed. That path goes over a hill. The hill is not symmetrical, the front face is steep and abrupt and requires considerable effort, but once the summit gained, the descent back to normality is a more gradual and comfortable amble.

Untill the next time.

With each successive crossing, the pathway becomes littered with the detritus and fallout of previous expeditions. Like the Everest base camp, the crap gets deeper, and the path gets steeper. Every time we cross that hill, it has grown a little taller and the air feels colder and thinner. The desire to just lie down in the snow and go to sleep forrever becomes increasingly seductive.

I’m going outside for a while. I might be some time…

I first noticed this trend during cycle three. I had my chemo a few days before Christmas and was looking forward to forgetting about cancer for a few days and throwing myself into the group madness and wanton over-indulgence along with everyone else. It wasn’t to be.

I woke up on Christmas morning feeling like death warmed over, and discovered while tucking into our traditional Christmas breakfast of smoked salmon and scrambled eggs – that I had completely lost all sense of taste. I don’t mean that vague blandness that often accompanies a cold or flu. I mean ALL taste. Abandoning the food I experimented tentatively with a glass of cold champagne. It tasted warm, brackish and flat, and clung to the inside of my mouth like an oily film.

Thankfully this distressing malaise only lasted a few days, but now on cycle number four, it is back with a vicious vengeance and has lasted much longer. Allong with a constant desire to sleep, a growing irrascability and the occasionl compunction to blow chunks it is at the core of my present missery.  And here’s the strange thing. There is an odd odour associated with the whole sorry experience. At least smell is part of it.

The first stage of every chemo treatment consists of a litre or two of saline infused with magnesium given intravenously. Don’t ask me why. something to do with kidney function. It’s a clear fluid, and fairly benign, certainly in comparison with what follows later. But here’s the thing. after about ten minutes, there is a strange warmth, like an afternoon sun on my back and chest that creeps up my neck. Then a delicate and hard to pin down perfumed scent surrounds me, and an associated taste which bubble up in my throat. It’s not particularly unpleasant, but very distinctive. But at the same time impossible to describe. It’s just not like anything else. But everything reminds me if it.

It’s this hybrid taste/smell/feeling that is haunting me. If follows me around, just out of reach. I find myself trying to swat it away like an annoying fly. I’m not even sure if it is real in any physiological sense, or just some kind of mental figment or echo.

When I was a child I had a recurring dream for many years. It was a waking dream in that I could get up and walk around the darkened house freely. In my dream, feeling my way scared in the blackness, everything I touched had the texture of very coarse sand-paper – the walls, the floor, my own skin – there was grit in my mouth and a smell of warm sawdust like you get when using an electric drill on hard wood. The house walls distorted and stretched in unexpected ways and I would become lost and disoriented for long days and nights at a time. This only comes to mind now because it is the only other occasion I can recall in my life where my senses become interchangeable and confused in such a disturbing way.

The taste thing is in turns depressing and comedic. I have become completely food obsessed in as far as each day becomes an endless and eventually fruitless quest for oral and sensory satisfaction. In spite of the best gastrointestinal advice, and flying recklessly in the face of common sence for someone with eosophagal cancer, I  find myself gravitating towards the spicy and exotic in a desperate attempt to find something that will register anything on the flavour gauge. Thais, curry, peppers, even an old jar of jalapenos I found in the back of the fridge. They all taste like porridge. (Without the oatmeal and sheep entrails and whatever else they put in porridge.) A beer tastes like used warm dish-water, and a glass of Merlot – yes I know I promised not to but this is an emergency – is unfullfilling and depressingly pointless.

Interestingly, I have made one breakthrough discovery. I turns out that my sweet taste buds are less adversely affected than the others. Sugary, syrupy comestibles still work there old magic to some degree. I crave donuts and chocolate milk all the time.

This really is dying by degrees.

A few days into this whole cancer trip, I corresponded with a friend of a friend who has been through the chemo ordeal and lived to tell the tale. He fortold this stage of my journey would come to pass, and said rather cryptically I thought at the time, that when all else failed Marmite would be my best froend. It is apparently a widely known truth amoungst the hairless innitiates, that whatever else happens, marmite on warm buttered toast will always taste good.

How right he was.

Anyway, that’s the grizzeling over with for today. Normal services will be resumed as soon as possible.

 

 

 

 

 

 

 

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  1. David Smedley says:

    Hi Linds – that sounds pretty grim indeed. I am wondering now if this explains the hospital food. You clearly should have expressly ordered the “not on chemo” menu back then.. Hoping your sense of taste returns soon ( since you’re British I am aure it will).

  2. Vegas says:

    Winge all you want mate, it’s your blog. You’re description of beer left me feeling uncomfortable and anxious, reminded me of the way I used to feel around Sion when we were at Saatchis.

  3. Tricia Hollingum says:

    English Marmite I hope!! Can you still only get those tiny little jars in NZ??? If you need a whopper of a jar I can send you one. Thinking of you heaps, hang on in there honey. xxxxxx Glad you are getting the posts again, was frustrating when they disappeared. xxxx

    • Linds says:

      Of course English Marmite. What do you take me for?

      Yes we can now buy it here. I Nno longer have to have it flwn in from Tesco UK every week allong with the Sunday Times, Viz and Jaffa Cakes, which was getting expensive. Excepy, unbelievably it’s called My Mate here because those sneaky, creepy, god-bothering wierdos at Sannitarium have appropriated the good Marmite name forr their own ersatz yeast extract spread – a pale immitation of the real thing. Which they no doubt claim is actually a New Zealand invention, allong with fush’n'chups, Pavalova and Russel Crowe. Fucking colonials.

  4. Bryan Whitfield says:

    Hi Linds, I’ve always thought Merlot is unfulfilling and depressingly pointless, with a taste and texture that resembles 150-year old chimney soot in suspension. And that’s without the ‘benefit’ of chemo. I’m with you on Marmite though – it’s the embodiment of nectar, the culinary masterpiece that renders all haute cuisine unnecessary. As you can tell I have a sophisticated palate!

    Have you considered sating your sweet craving with sherbet dips? I wonder if the brand (Barratt, I believe) that comes in cardboard tubes, with a stick of liquorice in the middle, is available in NZ? I could post you some, but the white powder might not make it through customs.

    All the best, Bryan

    • Linds says:

      Hi Bryan, great tpo hear from you.

      I’ve often fantasised about Sherbet Dips over the years. They were my absolute favorite when I was a kid. I think they were called Sherbet Fountains in those days, but exactly as you describe. A yellow paper tube with a black liqourice straw to suck up the powder. I cas still feel the explosive fizz of the sherbet hitting the back of my throat.

      We went to Queenstown in the South Island for a short holiday back in November and I was excited to find amongst the towns many attractions, The Great Brittish Lolly Shop. I immediately went in and asked if they still made Sherbet Fountains. “Oh yes” I was told. And they had some in stock. I was bitterly dissapointed to discover they were about half the size of the orriginals, the yellow paper had been replaced by plastic, and here’s the truly depressing news – the liqourice straw had been superceeded by a black plastic one! I was outraged and refused to purchase such a travesty.

      We live in disturbing times Bryan.

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