C-18: The long and winding road
First published Saturday, April 22, 2017
I did mention that if there was a large gap between ‘C’ chapters, then I was no doubt having a bad time, didn’t I? I wasn’t joking.
When I pushed my inquisitive little nose into this world for the very first time, I was a scrawny, sickly child. There are photos of me, at a few days old with my Great Grandfather, where he looks like a robust ball of healthy, bouncy, manhood and I look like I’m ready to give it all up and not even attempt the life-thing.
I brought with me, or acquired as a small baby, various afflictions which have dogged me ever since. The first major one was allergic contact dermatitis caused by exposure to the flour my Dad used in his baking shop. The effects were severe and every night my hands had to be bound in bandages and tied to the sides of my cot to stop me scratching till I drew blood.
The short-term outcome was we had to move out of the shop, my Dad had to change careers away from one of his life’s passion, the other being music which, fortunately, I was not allergic to.
The long-term outcome has been life-long eczema, sometimes mild, sometimes more severe. I’ve ended up in hospital twice because of it, but most of the time it’s manageable. It flares for reasons which are difficult to pinpoint (standard medical texts don’t help much) but seem to be associated with changes in weather patterns. It doesn’t seem to matter which way the weather changes – good to bad, or bad to good – my skin doesn’t cope very well.
It’s been a lot better as I’ve got older, but it still lurks insidiously in the background, waiting to appear like a malevolent wraith shrouded in a slippery cloak with jagged, razor-sharp, clinging claws. The last two weeks it’s probably been a combination of the weather and the drugs. It’s been bad.
The milder characteristics of severe reactions include itchiness, red skin, and rashes, while the more extreme symptoms include thickening of the skin, splits appearing like separations in Tectonic plates, peeling of great areas of the thick, dead skin, and the splits deepening until the dermis just gives in and starts bleeding as all the layers become exposed. Associated with this, of course, is the exposure of the raw nerve endings. Pain reminds you that you are still alive.
Walking is a problem because every step places pressure on the splits which then deepen, widen, and tend to split more readily. And my hands decided to join in the party. The infant dermatitis left permanent scars on the palms of my hands; they look like high-definition images of the surface of the Moon.
The usual chemo-induced fingertip tingling was exaggerated and, this time, included my palms as well. I couldn’t touch anything cold at all and then I couldn’t grip properly either, cold, lukewarm, or hot. When I did, the pressure caused blisters which turned into angry blood-blisters. Then my palms turned rashy-red, then they dried out, and both the fingers and palms decided to fray like torn tissue paper. The coup-de-grace was when the folds on the insides of my finger joints decided to split. Sweet joy.
The other major affliction which has dogged me over the years has been asthma. Eczema and asthma tend to go together for some reason. I guess they are both about thickening of tissue: eczema the external tissues of the dermis and asthma the internal tissues of the windpipe. My asthma started the week after the Munich air crash in 1958, so my guess is it was an emotional reaction. Whatever started it I’ve endured it for 60 years during which it has fluctuated between very bad – once having to be hospitalized and pretty convinced I was going to die – and as good as non-existent.
Like eczema, asthma has an interesting dynamic depending on which country I’m living in, eight at the last count. I assess it by the number of drugs I have to take; you know, the blue inhaler thing. The worst is New Zealand. I lived near and worked in Wellington which, according to some lists, is the windiest city in the world. Aircraft landings are always fun. The wind means there are always millions of bits of stuff blowing around which you then breathe in. Not good for asthmatics. Britain is pretty bad most of the time, Singapore is middling, Saudi Arabia is great – very hot but very dry – and Bali is, touch wood, excellent. It all seems to be a mixture of the temperature, the wind, and the humidity but why the eczema and the asthma should respond differently to these factors is beyond me.
This cycle of treatment has been tough. I’ve continued to lose weight, getting down to 80 kg on 14 April. The weight loss is understandable because I haven’t been eating and, apparently there’s a nice relationship between energy-in (food) and energy-out (basic living and exercise). I’ve been conserving the energy-out by doing nothing except lying in bed wasting away, but I haven’t quite cracked the energy-in part of the relationship! Sometimes I haven’t eaten anything for three or four days whereas other times a hearty meal has consisted of a piece of fish the size of half a fish-finger, then nothing for the rest of the day. Not a good regimen.
My tastebuds are shot; food which tasted reasonable last week tastes like cardboard this week. I am drinking, however. During the previous cycle - number 4 - I neither ate nor drank for days on end. Obviously, hospital was the outcome of that. This time I only ended up there once for a hydration infusion while my feet were being tended to. I can’t stand plain water. I love sparkling water, but the CO2 isn’t good for my grumbling stomach, so my drink of choice has been Oceana Sea Salt Lemonade.
Taken straight from the fridge it’s fantastic, but after a prolonged series of three or so litres a day it gets boring. A dash of whisky cleanses the palette wonderfully and all is well. The three weeks of this cycle included a lot of diarrhoea and a lot of vomiting and a lot of diarrhoea and vomiting. Week one included days where I had eight bouts of diarrhoea followed by seven the following day, then six, four and one. That was a false dawn because it was backed up by simultaneous diarrhoea and vomiting four or five times a day for another week. There’s not a lot you can do when that is happening and not having any food in your stomach doesn’t help the process.
‘Those who know’ - people who have been through it or are in the midst of chemo - continue to be a source of strength. I’m still not convinced my experiences are at the far end of the chemo possibilities but, as they worsen, there are certainly fewer people who can have had it worse. That’s just plain maths. I don’t envy anyone who has been further down the road, but I do know that ‘out the other side’ will be a degree of enlightenment not possible without the nasty journey.
Strange dreams continue, although they are now intermittent. One was about Winifred Atwell! Who? You’ve never heard of her, have you? She was actually terrific; a Trinidadian pianist who was a variety star in Britain in the 1950s. She was the first black person to have a UK number 1 and remains the only female instrumentalist to do so.
She was an accomplished pianist, performing the first half of her act playing classical on a concert grand, then moving across the stage to, ‘My other piano,’ which was a beaten up, honky-tonk upright which had been rescued from a pub. On that she played bouncing ragtime and a splendid time was guaranteed for all. On a side note: the tinkling sound of honky-tonk pianos is achieved by sticking drawing pins through the strings. Not a lot of people know that.
Hallucinations also introduced themselves. Dreams always have a dream-like quality to them; there’s something slightly surreal to the images and vision, but hallucinations are real. They ranged from meetings with people, to reading documents, each and all with crystal clarity which had me arguing black’s white the following morning that I had actually met the people or read the document. The steely knives continue to hack at my head, all apparently caused by the tumour applying pressure. I don’t like the steely knives. Of all the cancer symptoms they are the ones which depress me the most. It will be nice to see the end of the chemo and be able to move onto the targeted blitzing of the tumour itself with the radiation.
Clive and Martini
I guess everyone gets depressed at some time or other. I’ve always done a good job of disguising it and projecting an upbeat demeanour. I worry though that, lying still while my energy levels deteriorate, will slip me past a tipping point without me noticing and I’ll just slide downhill from there. It’s an easy transition from depression to despondency to morbidity, and the thought of another six weeks before radiation is definitely a depressing one. I know the potential benefits of the treatment far outweigh the definite consequences of the disease but the nastiness chips away like a Chinese water torture.
And I’ve been worried about Martini for the last few weeks. She’s been doing too much.