C15: Black is the New Carrot


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.

C:14 Downhill Racers and Cheese and Egg Mess

If you raid the fridge at three o’clock in the morning and make a Ploughman’s Lunch, that’s a good indicator that your appetitive is returning, right?

Well, not really a Ploughman’s Lunch because I couldn’t find any pickles, the Branston seemed to have taken unapproved leave of absence and I couldn’t get the top off the salsa, but a cheese sandwich and a beer. If you’re on Bali and it’s three ay-em, that’s probably as close as you’re going to get.

Real breakfast was a sausage-egg McMuffin and hashbrowns en route to a marathon court session for child custody, interspersed with frequent nibbles and snacks of sweet bread filled with a Nutella-like substance which tasted yummy.

A delayed yet delicious late lunch was devoured, consisting of crispy duck with a noodle and vegetable soup including broccoli, carrots, bok-choy, corn, and peas. In fact, it was so delicious that I think I ate some of the poor bird’s bones. That just about did me in for the day, but what a step-change from the previous two weeks where I’ve been pecking like a Dodo intent on hurrying extinction.

‘For the day’ is so accurate because at midnight I raided the fridge again for another Ploughman’s. The pièce de résistance: breakfast this morning, one of my all-time favorites and a little known culinary gem handed down by my Master Chef Rochdale Dad. Cheese and Egg Mess.

The name of the dish is mine but the recipe is his, and he really was a remarkable cook. I guess baking was his specialty but he could turn his hand to anything within the confines of a kitchen. It’s a very simple dish but so tasty that it’s not actually possible to have enough. I’ve tried.

First, grate cheddar cheese into a frying pan. Extra mature cheddar is best, the stronger the better. Then spread it around the pan so that there’s a ‘hole’ in the center into which you can crack one or two eggs. Next, drizzle milk, more or less to your taste, around the outside so that it interplays with the cheesy bits. A dash of salt and a generous helping of freshly ground black pepper round off the basic dish but you can also cover the eggs with a little more grated cheese if you wish: it helps stop them getting too hard.

I tend to go overboard with black pepper. You know when you’re in an Italian restaurant and the guy, inevitably a guy, comes round with the bazooka-sized grinder? My instructions are simple: “Go crazy.”

Put the pan on a low heat until the milk starts to get excited and the cheese starts to melt, then place the pan in the oven, or under a grill, until the cheese has acquired a crusty, golden sheen and is begging to be eaten.

Transfer the mixture onto a plate and eat by mopping up the paste with good, fresh bread. The transfer is where ‘Mess’ becomes appropriate. ‘Good’ can be whatever your persuasion of bread is, but for this recipe, I actually prefer white, plastic bread and lots of it, maybe half a loaf! Your taste buds will thank you.

Tonight I plan to make sushi, mainly salmon and tuna maki. Lots of it. So I guess my appetite is back.

Last night’s dream was another strange one. Martini had taken the car off to somewhere distant and I decided to follow her on her motorcycle. That’s weird in itself because I’ve sworn never to get on another motorbike in my life, neither as driver or passenger. Ever. However, off I went. More weird was I was riding through the villages of the Derbyshire Dales. Then I came across a series of major highways but they were all downhill and it was raining. Really downhill. Like 1-in-3 or thereabouts, so the brakes were totally useless and the speed just kept increasing at an increasing rate. Exponential increases. Catastrophe loomed. Then I ran into the back of a bunch of other vehicles. Apparently, I was OK because the next thing was both Martini and I were trying to put the bike into the back of the car ready to drive back to, presumably, Bali. Via Derbyshire. Dreams, eh?

In other news: with the incredible support, compassion, consideration, and generosity of my employers, the Glenmark Aquatic Foundation, we’ve decided to have the next round of chemo in Bali. It’s scheduled for Monday.

The looming flights had been bothering me because, although I am feeling much better these last two days, the past two weeks have been unpleasant, to say the least. I’m sure other chemo recipients have had much, much worse experiences, and that mine have been at the lower end of the chemo spectrum, but unpleasant they were. Even if everything goes to plan the door-to-door elapsed journey time is around 16 hours. Staying here for the treatment is like a weight off my shoulders. A welcomely absent weight.

The sushi got sidelined for a few days. Sourcing seaweed was easy, sourcing wasabi was difficult but successful in the end, and we searched and searched for the slimy pink ginger stuff but couldn’t find it anywhere. Not to worry, I’m sure sushi is sushi, pink ginger or no pink ginger.

There’s a superior supermarket quite close by which had salmon priced at 30,998 Rupiah for 100 grams. As you, my dear readers, are liberally scattered across the globe I’ll leave most of the ‘real money’ conversions to you but there are around 16,000 to the British pound. The fish price research was academic because our real target was the fish market. This is right next to the beach, is vast, and has a zillion types and sizes of fishy and crustacean-y things with googly eyes and big, fearsome mouths and which range from tiny to downright Y-U-G-E. They stare at you with malevolent gaze, and you just know they are not dead but waiting patiently for you to approach so they can snap your finger off in the twinkling of one of their beady, all-seeing eyes.

Whole salmon was 30,000 Rupiah per kilo! And that’s with no bargaining. With a little bit of tenacity, I’m sure it could have been 25 or 27 thousand, less than one tenth of the super-supermarket price and fresher. One whole salmon and one whole tuna were consigned to the double-walled black, plastic bags which do nothing to stop the car smelling for days and off we went.

The recipe for sushi is simple, right? Rice, maybe a veg or two, something fishy, maybe seaweed, maybe not, and, wallah! Soy sauce, wasabi, slimy pink ginger if you have it, dextrous use of chopsticks, and a hearty snack becomes a satisfying meal. Martini had done her bit with the rice, flavoring it with lemongrass, bay leaves and whole black peppercorns, but we declined the usually required rice vinegar, salt and sugar additives for the sake of simplicity and sanity.

I became the itamae of sushi. However, Jiro Ono I will never be. He’s been at it for 65 years and reckons he’s still working towards the perfection of his art. He runs a 10-seater restaurant in a subway station in Tokyo. It sounds pretty mundane, but he has three Michelin stars and charges almost US$300 per head for a meal.

The seaweed behaved itself for the first two sets of rolls. “Ha ha!” I thought, “Maki is easy-peasy.” Pick up a fistful of rice, knead it into a sausage shape, lay it on the seaweed. Simple. Carefully layer avocado on top of the rice. Simple. Gently place strips of tuna on top of the avocado. Simple. Take the edge of the bamboo mat and roll the rectangle of seaweed so that all the ingredients are tightly bound inside. Simple. Take my knife and slice the seaweed roll into four, rather too large, bite-sized pieces. Simple.

And it was. Simple.

… for the first two sets of four maki rolls. After that, the seaweed refused to roll properly and each attempt produced a messy splodge which had to be re-crafted by hand! However, it looked pretty good on the serving plate.

Soy sauce is soy sauce. You can’t go far wrong with it, can you? The wasabi, however, was from the darker side of an evil volcano with a long-felt grudge against humanity. Martini described it as burning her ears. All in all, double yummy. Tell you about the salmon some other day.

C13: Morphine, Drunken Glaswegians, and a Blue Peter Badge

When you have titanium rods and titanium screws and bone grafts and angry tumors all jiggling around vying for living space in your neck, it’s always a good idea to have a secret stash of morphine hidden somewhere.

When the fractures were diagnosed (as told in C1:), the guy with the less than exemplary bedside manner gave me six tablets of morphine as emergency rations for the journey from Canada to India. I took one that night, Christmas Day, and another before I flew the following day, Boxing Day. I’ve been frugal with the remaining four, only taking one a few weeks ago, a couple of days before I flew from India to Bali, because I was close to rolling on the floor moaning and groaning like a baby. The steely knives are vicious.

Today was as close to being a morphine day as I can imagine without actually being a morphine day, but the fact that they were there if needed certainly helped.

Tablets are my staple diet. Six for breakfast, one for lunch, and three for dinner as constants, plus others as necessary, described by the physicians as S-O-S, for nausea (every eight hours), others for diarrhea (every two hours), and yet others if the anti-diarrhea ones do their job too well and I’m constipated!  Capsules, caplets, tablets, and tabules. No, I have no idea what a tabule is, but it scanned well. Plus, of course, the painkillers. They go down like candy. I leapfrog paracetamol and ibuprofen and, usually they manage the problem OK, but it’s a chronic prescription. Today they failed. Just not enough tablet-power. I even doubled the dose but I was close, very close, to morphine.

Living on the Space Station must be similar. They eat dehydrated stuff and tablets all the time don’t they?

The bad dreams were back last night. One starred three drunken Glaswegians (What’s the opposite of oxymoron? The use of a superfluous word that is already implied by another word, no matter which of the two you examine).

They arrived and scraped their car along the side of mine, metal on metal for the whole length. Then they tried to break my legs by driving at me and ramming me against a wall. Then, when I was getting away and phoning the police, they jumped me into some undergrowth, pinned me down, squashed and crushed me, and tried to strangle me. Then I woke up.

And then there were the frogs.

Hannah had sent me a picture of lots of frogs jumping into trees just before the onset of an earthquake. Really ‘sent’ me the picture. By snail mail. For some unfathomable reason, my Mother had opened it (she lives13,000 kilometers away but that sort of detail doesn’t interfere with dreams, does it?) and phoned me to complain about the amount of testosterone they must be using jumping up into the trees. Then she asked if she looked out of the window and there were no frogs did that mean there wasn’t going to be an earthquake.

“We are such stuff as dreams are made on,” said Prospero and he was probably right.

Thursday, 3 March. Mark it in your diary. First day of vomiting.

Is that the Full Monty of Chemo nasties? I felt that was the only one missing, so I’m pretty sure I can get the badge now.