I try to be diligent about updating these entries, so when there’s a big gap between them you can be sure it’s not a good sign. Consequently, this is a long post. If you are one of those people who “Don’t want War and Peace,” then the answer is simple. Don’t read.
C14: signed off on a good note: lots of yummy recipes to talk about and an appetitive which was starting to look normal. Ha! Ha, I say. Chemotherapy laughs at your pathetic optimism, you foolish and naive rookie.
Let’s start by adding to the list of side-effects: itchy skin which just asked for razor-sharp fingernails to draw blood – Jean-Paul Marat would be insanely jealous; wooziness meaning it took an hour or so to wake up properly; the tingling raised to new heights; in fact all bodily sensations taken to extremes, sometimes lightness, most times very heavy, no headaches alternating with severe and a reluctant resort to the stash of morphine; and black vomit. That’s right: black vomit.
Black vomit is a weird sight. It’s not what you expect. All vomit contains diced carrot, right? It doesn’t matter what you’ve eaten, there are the diced carrots. Not in this scenario: copious, black liquid and lots of it.
The day after it got worse: not only the vomit but the diarrhea also assumed a Pantone tinge of 19-4010 which is appropriately named My Soul. I took comfort from the thought that the blackness was caused by the nasty cancer cells being sloughed off my intestinal lining and expelled from their host body. Me.
The blackness lasted for days and then gradually morphed into dark green before reverting to their standard vomit and diarrhea hues. And it had all started off so nicely.
Shortly after C14: I went for chemo cycle 3 at the local hospital. No problems: infusions are infusions after all. What is interesting is the process of upskilling different medical personnel in all things Clive.
Many years ago at a swimming federation, I went through three different CEOs, a temporary CEO, and a period of me as Joint Acting CEO. All within two and a half years. Training up CEOs is an art-form! They parachute in, on a bright Monday morning, thinking they’re going to change the world by lunchtime and you just have to bring them down to earth, explain reality to them and, in most cases, try to educate them in the ways of sport. The last bit is the most difficult because most of them arrive with no idea whatsoever. Governance Boards have a lot to answer for. Anyway, back to hospital staff.
Fortunately, and most unlike sport, medicine has clearly defined diagnostic and treatment systems and methodologies which are pretty much constant across the world. What differ are the patients. In Asia you are offered tea as a non-negotiable option for a meal or snack beverage. Shifting the mindset to accept that coffee is, firstly, acceptable and, secondly, available, takes a lot of effort. Little things like that, but there are lots of them. Once they’ve got it, they’re good, but then you change hospitals and start all over again.
The infusions took all day Monday and I had an invite to meet an old friend for drinkies that evening. Just to be safe we moved it to the Tuesday and met at my favorite seafood beach restaurant just down the road. Appetite all good. Whole fish devoured. One large beer, but then a warning sign which went ignored: I ordered a small beer for my second and I didn’t finish it. Bells should have started ringing but selective deafness may be another side-effect.
Around midnight the fish decided it didn’t like my insides. Shame really because it was nice fish.
People still keep insisting on phoning instead of writing, Talking is very hard work. Firstly I have to concentrate more than usual to listen to and understand what they are saying. Then I have to formulate my answer. This tends to be a slow process because, I guess, the drugs are addling my brain. Once formulated, I have to silently practice the delivery to make sure I can form the words properly before I attempt to actually verbalize the reply. This inevitably turns out to be incoherent because my mouth is generally so dry that lip synchronization is impossible and the volume tends to be little more than a whisper. Attempt number two sees an improvement but it’s invariably the third go-around that makes contact. That, then rinse and repeat. All-in-all, a prolonged and inefficient process which takes its toll; who knew that concentration could be so tiring, eh?
Once the first two or three days of chemo 3 were rolling along I started to lose my appetite again. Basically, I ate nothing and drank nothing for days, which is obviously not to be recommended, but nothing took my fancy except nothing. Nothing was the most enticing food I could imagine. Nothing was palatable, so that’s what I ate. Nothing.
Then the vomiting started: very frequent, very copious and very liquid. How is that possible – nothing in, but lots out – defying the laws of physics? And a nest of baby dragons had taken up residence in my stomach and enrolled for courses in white-water rafting. I should have recorded their complaints because they were voluminous both in number and in volume. They stayed there for seven days. Not be left out of the equation, the diarrhea kicked in. Again, very frequent, very copious and very liquid. Something had to give. Me.
Off to hospital for IV transfusions to keep my fluid levels up. That was all day, but I was back home for a non-existent dinner. The relative feel-good factor lasted 36 hours and I was back in hospital on a permanent drip, this time for four days. And that’s where the Model T color options presented themselves: “Any color you want providing it’s black.” Rather weird to be excited by the color of vomit and diarrhea I know, but that’s the joys of chemo and vomit is part of the contract.
The side-effects of chemo bring with them enlightening experiences about the nature of existence. No food or drink for days takes its toll and results in a general systemic weakness: literally no energy to do anything except lie unmoving in bed. That’s to be expected but what was a revelation was a creeping lack of will to do anything. Weakness means that you can’t do much, lack of will means you don’t want to. It’s a strange and somewhat disturbing slant on life.
I suspect it’s what happens when people die “peacefully in their bed”. They gradually get weaker and weaker, becoming enveloped in an aura of emptiness, but some fight the downward spiral while others passively succumb to the insidious malaise and allow themselves permission to cease resistance. The choice is peaceful acceptance or, in many cases, futile battling against a relentless foe. The easy choice is acceptance. Of course, the Catch-22 is that they are the foe. The cancer is them ‘simply’ reconfiguring parts of themselves and realigning their purpose from continued survival to one of being hell-bent on self-destruction.
It’s easier and much more comforting to go with the flow of lack of will. No effort is required; in fact, no effort is the ever-increasing default.
This illustrates another dilemma brought about by the nature of the symptoms. During the really bad times I can’t write, neither physically or mentally. Sitting upright tires me in a matter of minutes, and concentration and creativity are vague and distant memories of an abstract and elusive fuzzy haze. Only when I am feeling relatively well can I physically write, but that means that I am no longer in the throes of depression and despair, the slump of melancholy and meaninglessness, the ache of pain and discomfort. I write, therefore, from a position of relative well-being, so conveying the true feelings present during the bad times is difficult. It becomes an intellectual memory exercise rather than a reflection of a current emotional state.
The ebb and flow of the symptoms brought with it a welcome respite from self-imposed hunger strike. One morning I decided to treat myself to an elaborate pancake. To be precise, if it was listed on a café menu it would be a Mango, Marmalade Pancake with Vanilla Ice-cream and Drizzled Honey. The mango wasn’t quite in season but, when the time is ripe (sic) the dish will be a stunner.
Precise taste is important. Martini tries her best to get me to eat, but I have to ponder long and hard before deciding what will be edible and what will produce spontaneous gagging. Sue (“One Who Knows”) swears by fresh pineapple chunks but, for me, its mango juice. Preferably ice cold. I also have a craving for kippers and poached egg for breakfast but the kippers will have to be mail-ordered from afar. Need to do some research.
Speaking of Those Who Know, Cousin Annie gave me some welcome reassurance the other day. I worry about my whinging coming across as pathetic to those who have already been through the chemo experience and who have been deeper and further into the dark forest of self-knowledge than I have:
“You’re probably right, but it doesn’t matter that others may have been through worse, this is happening to you and it’s unpleasant and new. You never know what to expect as each person reacts differently but as I said to Martini, if it’s making you ill, it’s cos it’s doing its job and that’s what we all want. You ever seen The Shawshank Redemption? Of course you have! Well, this is your mile long tunnel of shit, can you hear Morgan Freeman in your head?”
The list of Those Who Know is vast and their advice, experience, and reminiscences are both welcome and reassuring.
Cytotoxic drugs can count. A pattern is emerging where I feel energized for the first two days after infusion of the major venom; then the nastiness creeps in and it’s becoming more nasty as the treatments proceed; then those nasty symptoms recede a few days before the next cycle is due, and are replaced by the steely knives. They arrived right on cue this morning, four days before the end of the cycle. Straight into my right temple, through my head and into the tumor which is still happily living its parasitic, cuckoo-like existence inside my C1 vertebrae. Roll on the light-sabres of radiation.