C17: Or a Train Coming Towards Me

What happened to my usual two days of goodness: the respite where I feel energized before the Dark Side kicks in and the rot starts?

Chemo cycle 4 was yesterday and the vicious red venom was infused by a Manchester City supporter. Not a good omen and I was hastily advised by many friends to “Get out of there immediately,” even the City fanatics agreed there were dangers involved. Normally I feel quite bouncy at the conclusion of the infusions; it’s quite pleasant, but yesterday I felt nauseous throughout and very weak and ‘down’ at the end. I blame the blue end of Manchester, of course. The finger tingling, hand shaking, and cramping started immediately, and when I reached home I had a fever. My muscle tone is almost non-existent because I’m spending most of every day either lying down or sleeping. It was both worrying and depressing.

Worrying because the first three cycles have been easy, handle-able and horrid in that order, but each has started with at least two days of feeling bouncy. Yesterday broke the pattern and I don’t like broken patterns. I was hoping the pattern would be a pyramid-type thing where cycles 4, 5 and 6 reversed the trend and were horrid, handle-able and easy – light at the end of the tunnel and all that. The horrid was not a pleasant thought but if it was part of the turning point then OK. Fear is not pleasant but it’s a condition I can deal with. Fear is when you don’t know what’s going to happen.

The depressing aspect was the possibility that the pattern was, indeed, continuing but that I had the wrong pattern. This possibility was that the escalating horridness of the progressions would simply continue, becoming more and more horrid. Beastly, dreadful, hideous, appalling, unspeakable, ghastly – whatever the escalating degrees of unpleasantness are. This leads to dread – you know what is going to happen but there’s nothing you can do about it. That’s depressing.

The steely knives had appeared during the transfusions and they got worse and worse as the evening progressed. Nothing seemed to shake them, even the morphine. Sleeping tablets were a waste of time and more painkillers at one in the morning also appeared useless.

And then …. 05.30 arrived and I felt great! No headaches, no weakness, and clear(ish) thinking. The only negative was an itchy head, but that could have been lots of ants trying to bury into my brain (we have seasonal ant infestations of varying sizes, these are small things) or good ideas trying to worm their way out.

I’ll let you decide.

C16: Game of Two Halves.

April 2: two points of interest today!

First, my weight is 86 kg. My fighting weight in my hey-day was 84 (13 st 3 lb) and I really wanted to make that at some point because, well, just because. That means that I’ve dropped 18 kg since the problems really started escalating in early December and I stopped the eating lark. I did need to drop quite a bit but 18 kilos is quite a hefty chunk, isn’t it?

At the start of chemo 1, at the end of January, I was 98 kg so the drop is 12 kg in 9 weeks. On the way down, 92-94 kg felt good. It felt comfortable, so it will be interesting to see what it feels like on the way back up again, whenever that is.

Second, today is the end of chemo cycle 3 of the six, so half-way. Time for a 15-minute break, a quarter of an orange, a swift once-over with Dettol and a wire brush, a generous swill with the magic sponge, a rub-down with The Sporting Life, and a quick pep-talk from the Gaffer, whoever that may be. Game of two halves and all that.

But first, we have a blood test before the chemo tomorrow. I have to fast before the blood test but I keep dreaming about Y-U-G-E beef sandwiches – six or seven generously large slices of beef, liberally slathered with mustard and seasoning, on fantastic, multi-grain, farmhouse-type bread. It’s not fair because I can’t eat anything until the blood draw is over. Then I’ll pop into McDonald’s for a sausage-egg McMuffin or two. With hashbrowns. Or two. And coffee. Or two.

Anyway, as I say, Game of two halves. All downhill from here, what!

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.

 

C12: Something More Interesting to Report

Chemotherapy knows things. Chemotherapy reads blogs. Chemotherapy is vindictive, malicious, and cruel. Chemotherapy is malevolent, heartless, and spiteful.

At the conclusion of C11, I said I had no side effects and I felt cheated. Well, that came back to bite me in the ass, didn’t it? Chemo 2 was last Monday 20th. Tuesday I felt fine. Wednesday it started. The finger tingling got worse and I acquired shaking hands which developed a penchant for spontaneous cramping. My stomach felt like it had an inflated football inside of it. Not only that but it was accompanied by nausea. Diarrhea descended (sic) in all its glory. My ankles became numb; no idea what that was about. I fluctuated between fevers and cold. I developed mouth ulcers. Not only that, but they combined with the tingle-inducing sensitivity to cold so that when I drank a cold beer my top lips sensed tiny shards of ice in the beer. There was no ice and it was only my top lips, but it was so realistic. Repeatedly complaining and searching for the ice was a fruitless task.

Once I arrived in Bali it got worse. I was totally restless. Couldn’t settle in one position or one place at all. I developed claustrophobia and had lots of bad dreams, Not quite the screaming ab-dabs of nightmares, but definitely the shaking, waking, quaking of things not wanted nor asked for.

Admittedly not everything is there all the time, but a good few of the possible combinations have played themselves out. It comes at you likes waves in the sea, ebbing and flowing, approaching and receding, teasing by sometimes touching you and threatening to cover your feet, while at other times it throws away the teasing and simply knocks you down and tries to drown you, each time bringing with it another mixture of the flotsam and jetsam it has collected while it recharged its evil batteries.

On the good news side, at least I think it’s the good news side, my hair seems to have stopped falling out in such copious quantities. Elliot came up with a neat description of why chemo makes your hair fall out and why nausea is the always present choice for mid-field general:

“Chemo attacks rapidly dividing cells – the cancer. However, hair follicles and digestive lining are also rapidly dividing, so they kinda get taken out by the friendly fire.”

Beautiful explanation. Friendly fire indeed. That’s exactly what it is.

So, the chemo bit back. I flew overnight from Mumbai to Bali last Wednesday and that was not pleasant. Fortunately, everything was reasonably on time but it was Malindo Air so no booze. And it was Malindo Air, so the videos were not particularly good. And it was Malindo Air which I’d flown four times in the previous week so I’d seen them all anyway. And it was Malindo Air so you can’t order special diet stuff and I had no idea what foods the cabin personage was trying to explain to me. And it was Malindo Air so that when I did agree on a food choice it was some Asian concoction which didn’t sit well with my taste buds. My problem, more than Malindo’s I think.

Now it’s Tuesday, late afternoon, and I wanted to write that I’m starting to feel better. However, I’m not.

People keep contacting me and I would really prefer to hide under a stone. Martini can lift the stone now and again and ask if I want my beer refilling; other than that, trying to find a comfortable position for sleep and then sleep itself is the activity of choice. I know their motives are honorable but I’ve always subscribed to the notion that no news is good news. If something horrible happens then someone else will have contacted you to let you know. Silence means [relatively] good news.

Go away, nasty chemo.

C11: Better Than the Alternative

 

I came into Mumbai via Delhi this time around. I feel I’ve neglected Delhi and it’s such a good program it doesn’t deserve neglect, it deserves extra attention. So I flew Bali-KL-Delhi using Malindo Air which, in theory, took nine hours, so no overnight flying ( I don’t sleep on planes), but in reality took ten and a half hours because the flight from KL was delayed. Not a major problem. However, this is what made the ten and a half hours seem like three months, four days, seventeen hours, sixteen minutes and forty-three point six nine seconds.

No booze.

I’ll repeat that.

No booze.

What do they think they’re playing at? The in-cabin entertainment was crap as well, but I can live with that by reading a good book. But …..

No booze.

Good grief!

How do they expect me to take my tablets? I’m actually an expert at dry swallowing (no comments please) but it’s not something I do out of choice (as the actress said to ….)

And the ‘bland’ food which had been ordered was far from bland. It was spicy. Not your usual Indian set your ass on fire spicy, but spicy nonetheless. So food was off the menu. That’s an oxymoron, surely.

The bad news is I’m booked Malindo on the return journey, Mumbai to Bali. Note to self: find a way of smuggling booze onboard. Suggestions are welcome.

New Delhi airport is a terrible design (lots of moaning and groaning, today, eh?) You have to walk forever to get from the plane to Customs. Mumbai is bad for that, but Delhi is on another planet. You actually walk to another planet. Mumbai tops the league for slowness of Immigration. I know it should be Emigration but, worldwide, it’s Immigration. The individual officers are OK, they’re efficient and friendly, but there are never enough gates/stations open: bad management. Result: long, slow queues.

In front of me were a group of five ‘senior citizen’ American women. It doesn’t take much to suss out Americans in any public place does it, because they all talk loudly enough to wake the dead. Their voices cut through the ambient atmosphere and impose themselves on everyone else’s conversation. Many times (most times?) it’s a pain in the butt, but sometimes it’s delightful to encounter. This was one of those times.

They spotted my imposing neck brace (I was tired) and started to ask questions. Long story short; four of the five were cancer survivors. I asked what the fifth had done wrong and they described her as “the baby” of the group, so I guess she’ll have to wait. I explained the neck fractures and we discussed chemo. Their unanimous verdict: better than the alternative. And so say all of us.

Which is a great segue into Chemo 2.

I was originally told the date for Chemo 2 was 19 Feb but I pointed out to my Oncologist that 19 was a Sunday. Oops! Change to 20th. However, my hair obviously didn’t receive the message. It had started to drop a few days previously but on the 19th, the very day they had been told they were due for refilling, the nasty chemicals decided to go into overdrive: hair dropping all over the place. When I rub my head over the sink I can block the drain. The major problem there is when I’ve finished playing drain-blocking games I forget that a zillion tiny hairs have lodged themselves behind my ears so when I stand up they either itch or fall all over the floor.

I have a “good head of hair”. Martini thinks I’m going bald at the back of the crown but Hannah assures me I’m not and she’s a hairdresser!!! However, Martini is winning this one at the moment. I’m a bit worried about the looks because my skull is bumpy. We’ll have to see how it all plays out.

The good news is Hannah tells me that sometimes you re-grow a whole new color and/or texture so I want my shoulder-length, blonde-going-on-yellowy-white curls back. Tom, building me up, said I could look more like Gandhi but then changed tack and agreed that I could turn back time to the blonde bombshell of my youth. Good boy.

So, Chemo 2: (Spoiler alert: it’s boring).

I was told to arrive at 9.00 and the estimate was four hours. Yeah, right.

I arrived early. Don’t have a problem with that so let’s start at the scheduled 9.00. I find my way through the rabbit warren which is Reliance Foundation Hospital and Research Centre and arrive at the Chemotherapy Unit. Usual thing, I guess: lots of recline-able medical chairs phentermine without prescription with drip stands hovering in anticipation; nurses gently gliding into their day; consultants in conspicuous absence – way too early for those Emperors of their medical worlds. Then my Oncologist appeared. Good guy. Totally bald on top so I told him I was well on the way to emulation.

Prep and pre-med take forever so the red jungle juice didn’t start its insidious course until about mid-day; so much for the four-hour estimate, but, all-in-all, as I said, boring; nothing to report and very little to distort. The chemo-port thingy is a great idea, they simply stab you in the chest and away the transfusion goes.

Towards the end of my first cycle, I had attention span problems. During meetings, I would completely zone out after about an hour whereas, normally, I’d be able to make at least 65 minutes! Only joking. This time I’ve been told I get cranky after a couple of hours and I also have the shakes which seem to be diminishing 24 hours in.

I was more awake and comparatively alert late last night whereas previously I was falling asleep every two hours.

So, apart from my hair falling out and my fingers tingling when I take vodka, or tonic water, from the fridge, I have no side effects. I hesitate to say it, but I feel somewhat cheated. Chemo has a reputation for extreme nastiness. My Dad’s chemo was horrendous, but that was thirty years ago so I guess things aren’t going to be the same. What do I do? Ask for nastier experiences? Take thanks in the absence of them? I am perplexed.

See you when there’s something more interesting to report.

C10: “When I use a word,” Humpty Dumpty said …

Words are interesting things. Not just their literal or even metaphorical meaning, but the emotional packages which accompany them.

“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.” “The question is,” said Alice, “whether you can make words mean so many different things.” “The question is,” said Humpty Dumpty, “which is to be master—that’s all.”

Humpty Dumpty had it nailed: the issue is which is to be the master. Is the word to be taken at its face value – its dictionary definition – or does the accompanying emotional baggage over-ride any logical reasoning and define and control the listener’s reaction.

And it is usually a reaction, not a response. Responses are considered, they are rational, and are the end result of a series of options based on thoughtful reflection. Reactions are knee-jerk actions over which the listener has no control; the control is with the deliverer of the message, not with the recipient. The Holy Trinity of ‘father (cause), ‘son’ (effect), Instant Knockout and ‘Holy Ghost’ (the process linking the two) is self-contained: it begins with the originator of the message and ends with the provoked reaction. Responses, on the other hand, start with the originator and then sit and simmer, as the multitude of possible effects are considered, compared, weighed, and calibrated; the response kick-starts another round of the Trinity.

The sound of the word itself determines the reaction. The listener receives the sound and the specific vibration frequency immediately triggers the reaction. With responses, the implications of the word determine the response. As Eileen Day McKusick describes it,

“It’s not about the words anyway. It’s about the underlying vibrational patterning, the tone, the subjective inner electromagnetic experience that is your perception, that we seek to understand.” (Tuning the Human Biofield: Healing with Vibrational Sound Therapy, 2014, Inner Traditions / Bear & Co.)

And before anyone thinks I’m going down the road of rhythmic Gregorian chanting to banish my particular demons, Ms. McKusick does not advocate it for cancer therapy.

Which introduces the first of my problem words: cancer. The big C.

Simply put, it’s an abnormally rapid multiplication of body cells. Because the replication is fast, too fast, the associated DNA becomes damaged and, as the replication continues the damage spreads. Imagine cutting your finger but the cut had a built-in characteristic of duplication. The cut copies itself, over and over again. That’s my best analogy.

Simply saying the word does provoke a reaction in most people; they physically and mentally shy away from it, but at least they do acknowledge its existence, even if they have difficulty repeating it back to you. And exist it does. Cancer is coming to a theater near you, sometime or other.

What I’ve found over the past few weeks though is that cancer is not the worst word in the medical lexicon. That status is reserved for cancer’s nemesis, chemotherapy.

Say it to yourself: che-mo-ther-a-py.

Splitting it into syllabic portions allows you to speculate and fantasize in all sorts of esoteric manner: che could derive from chi, the universal life-force; mother needs little explanation except as the nurturer of life; and py is obviously a misspelled evolution of pi, the ratio of the circumference of a circle to its diameter, a never-ending irrational number, just like the uncontrollable multiplication of the malignant cells. Circles have always been used as a symbolic representation of the Universe, so the serpent bites its own tail, utters a surprised yelp, convulses, and it all starts all over again.

Most people can hold your gaze when you say chemotherapy, some involuntarily shy away, but even for the holders it’s a forced, “I must not betray my true feelings” fix. The barriers, firewalls and other protections people put in place enable them to at least not flinch too much when cancer is mentioned, but chemotherapy is akin to He Who Must Not Be Named. It used to be cancer, didn’t it? Maybe 20 or 30 years ago, but now everyone knows someone who has had, or is in the process of having cancer. People have to deal with the word; they have no choice. The specter of Voldemort has transferred to chemotherapy. It is a force of evil and contains its own legion of Death-Eaters. Many people literally understand it as a euphemism for death-sentence. Their immediate reaction is, “Oh, you poor thing.” It’s like you’ve reported,

My leg fell off during the night and I can’t find any way of sticking it back on.”

“Oh, you poor thing.”

It’s a useless response.

And it doesn’t gel with the facts. Cancer survival rates (at least five years) are on the up and up all the time. Admittedly, for some types they are still pretty abysmal – skin cancer survival rates are below 10% and thyroid cancer below 2%. Of the popularly published ones, prostate cancer has the dubious bottom of the table ranking with 1.1%, but lung, liver, and esophageal cancers clamor for leadership in the 80+ percentage range. The league leader is pancreatic cancer which recently sat at an impressive 92.3%.

So, of course, the diagnosis of cancer could be a death-warrant, but so could walking down stairs, tripping over the cat, or driving in Bali or Mumbai. No one is immune from the Grim Reaper. Nor ever will be. But to watch people’s reaction to the C words it seems they cling to an irrational tendency to grasp at the straws of immortality, at least for themselves and for those whom they hold dear. People outside those circles fall into the, “Oh, you poor thing,” area of the Venn diagram.

So what is it with words? Why does one word – Voldemort – stoke fear, even dread, into the hearts of mankind while another word – kitten springs to mind – promotes warm, fuzzy feelings?

“In the beginning was the Word.” Famous words indeed. If you strike a tuning fork and stand it on a tray of iron filings, the filings will redistribute themselves into beautifully patterned shapes. Change the pitch of the tuning fork and the pattern made by the iron filings changes. The sound of the tuning fork is what we hear when the energy waves make contact with our eardrum, but the vibration of energy – the ‘jiggling’ of Richard Feynman fame – spreading across and through the tiny filings reconfigures their relationship with each other and they conform to spectacular and beautiful patterns. The frequency of vibration determines the pattern. If iron filings could ‘hear’, the pattern caused by the vibration would be determined by the ‘sound’.

Imagine yourself right back at the beginning of the Universe. Not a lot going on. To all appearances, nada, zilch. Apparently a boring void. All of a sudden the opposing yin and yang tug o’ war slips its handcuffs and an almighty energy vibrates across the void (That’s almighty, not Almighty). If the Universe had ears it would have been a sound, but it didn’t. We, however, writing about it billions of years later ascribe human characteristics and call it “a Word”. It’s the same thing. It’s a wave of energy. Everything is wave-producing, jiggling energy. The iron filings of the Universal ether are pulled into a reconfigured pattern which sets the scene for billions of years of evolutionary change.

The material – the iron filings – stay the same but the patterns change as the vibrations ebb and flow. Stars are formed. Planets break off and cool. Forests, oceans, mollusks, coelacanths, bees, pet rocks, and eventually humans. All formed from the same ‘iron filings’ which ‘heard’ the first ‘Word’. It’s innovation at its very finest. As Matt Ridley says when describing Darwin’s theory of natural selection, in The Evolution of Everything, “… the differential replication of competing creatures would produce cumulative complexity that fitted form to function without anybody ever comprehending the rationale in a mind.” In other words, it wasn’t planned. It just happened through a unique and serendipitous combination of circumstances. It evolved.

Other sages have made their own descriptions to illustrate the originality of our construct: Carl Sagan, “If you wish to make an apple pie from scratch you must first create the universe.” Even Crosby, Stills, Nash and Young reminded us that “We are all stardust.” (Woodstock, written by Joni Mitchell in 1969, but more famously performed by CSN&Y).

Of all the people who I think had it wrong, I’m going to pick on Shakespeare. That’s highly unusual for me because he had most things so right that it’s a scary thought. “What’s in a name? That which we call a rose By any other name would smell as sweet.” Really? I think he was being sarcastic, or maybe I need to read the play more thoroughly (or even thoroughly) and find counter-arguments.

I’d rather go with Lewis Carroll:

 “The question is,” said Humpty Dumpty, “which is to be master—that’s all.”

So, which is to be the master? Cancer, chemotherapy or cumulative consequences? I’ll go with cumulative consequences and the Devil tak’ the hindmost. It is what it is. It will be what it will be. And so far, so good.

C9: No Heavy Lifting

Sorry about the delay.

I’ve been busy.

The last Monday of January (30th) I checked in and was prepped for the Chemoport surgery. Just to remind you, a Chemport is a line which sits in a fleshy ‘envelope’ above my right breast, goes under the skin to a single stitch-wide incision on the right of my neck and then dives down again into my inner workings to find its way straight into my heart. Neat, huh?

The beauty of this semi-permanent line is that the chemotherapy transfusions can be made without the bother of finding a vein in my hand – always a problem with me – and then putting in place a needle-thingy – the I-V line.

Off we went to theatre. The usual vital signs were visible while we wheeled through the corridors and my heart rate dropped to 54. Not the 49 I was so proud of when I went for the really, really serious neck surgery, but 54 isn’t bad. When I had the endoscopy, colonoscopy, and bronchioscopy it was in the 80s so, true to form, the more risk involved the calmer I seem to be. My neck surgery guy described the risk fact as, “a ten,” whereas he derisorily described the Chemport as “a one!”

All went well so the chemo transfusions started: strawberry-red stuff and then yellow stuff which looked like a mixture of apple juice and urine. No side effects. None. Well, if you ignore the instant pins and needles tingling in my fingers when I take something from the fridge. I treat it as an amusing distraction but I do avoid the freezer.

That day and the day after I felt better than I’d done for days and days. I had a bucketful of tablets and potions to take with me so off I trot and prepare for a full day’s work on the Wednesday. It’s work-visa extension time and the Indian bureaucracy is at the extreme end of extreme so we have to stick to the rules and timelines.

My discharge instructions included:

  • Wear a mask if you’re out in public.
  • Don’t eat outside food; you don’t know how it’s been prepared.
  • Make sure you use your mouthwash and mouth paint correctly.
  • Stick to your meal timings and the advised menus.
  • Drink at least 3 liters of water each day.
  • Don’t do any heavy lifting.
  • Don’t do extreme sports.
  • Phone your Oncologist if you have any problems.

Well, I ask you! My interpretation is that beer is predominantly made from water, as are vodka, gin and whisky, so the fluid aspect is covered; heavy lifting has never been my forte; extreme sports prohibited me from rugby, skiing, rock-climbing and the more violent forms of Monopoly; and, in any case, all problems were covered by simply phoning the Jedi-master who would pass down the words of wisdom from his Oncolological high.

The mask bit is interesting. Once you start to pay attention, it is amazing how many people cough, splutter and sneeze on a frequent, regular and near-vicinity basis. Nasty germs are everywhere, Humans are amazing creatures. I’ve always rolled my eyes and shaken my head when encountering the Japanese tourists with the face masks, and they’re always Japanese, aren’t they? Disgusted of Tunbridge Wells immediately puts pen to paper and shoots off a missive to letters column of The Times: “Just who do these people think they are? Are they infected? If so, they should stay at home. Do they think I’m infected? If so, they should stay at home.” That sort of thing. Turns out they all have cancer.

The hospital’s parting shot was an actual shot: GCSF – granulocyte-colony stimulating factor – which helps stimulate the bone marrow into producing white cells and counters the chemo’s tendency to suppress the immune system (hence the mask and the ‘don’t eat out’ commands).

I troddle off home.

I felt the same on Wednesday. I felt energized. The PR attached to chemotherapy undoubtedly uses false advertising. Alternative facts. Hmmm …. No doubt the real truth will bite me on the bum sometime soon.

It’s been really nice hearing from ‘old’ friends who’ve been through the same or similar circumstances. Hearing the tricks of the trade about chemo and how to manage it is reassuring and supportive. Deep-felt, sincere thanks to everyone.

GAF, my employer, have been incredibly supportive and considerate. As you will know, it’s not often I am struck speechless, but I was over the past couple of weeks when we were discussing how to approach the chemo cycles and the rest of the treatment. All other things being equal (are they ever?) I will have the treatments in India – incredible hospital and top-class specialists – spend a couple of days in meetings or whatever, and then spend the rest of the three-week cycle in Bali. It looks something like one review week India, two weeks Bali. Providing I can manage the travel OK, it’s better that I’m in Bali with Martini than in India by myself. For one thing, Bintang beer is nicer than Kingfisher! Martini is quite prepared to be in India for long periods but being here is nice. Poor Martini: her brain is addled at the moment. Really and truly addled. I’m sure when she sees that I can get up and about and that I haven’t shriveled to a ghostly, hazy shadow of my former self she’ll be ok, but currently addled she undoubtedly is.

Speaking of travel:

As I said, last Wednesday was terrific. I felt energetic and clear-headed (!) The visa bureaucrats played their part well and stamped my extension by 2.30 p.m. It was time to fly away. We booked a Garuda Airlines flight Mumbai-Jakarta-Bali for that evening. The price was a steal so, hey, why not? We were soon to find out.

Garuda is the Indonesian flagship carrier and is usually very, very good. I mean, really good. Most of my usual connecting flights – Bangkok, Kuala Lumpur, Singapore – leave near midnight; this was 11.05. Mumbai is usually the slowest immigration and customs airport in the whole world but they were on their best behavior, no problems. The first eye-brow raising clue was the departure gate where the TV screen thing said GA 861 Bangkok & Jakarta. Bugger! Bouncing in Bangkok. The bounce was two hours. And bounce it indeed did. If my flights from Vancouver to London to Mumbai, while nursing a fractured neck, had landed with the same dubious ‘finesse’ I would not be writing this today.

Add to that the seat pitch was tailor-made for midgets and both the woman sitting in front of me and the guy sitting behind me were neighbors from Hell, one rocketing her seat back to full extension at warp-speed, and crushing my knees – she was not happy when I immediately returned her to fully upright at the same speed! – and the other continually bouncing my seat-back up and down, backwards and forwards, and inside and outside.

Then we go Bangkok to Jakarta – same landing technique – to be met with “Your flight to Bali has been canceled. We’ve re-booked you on the next one.” The next one was an additional 90 minutes. Then it eventually sat on the runway for another 90 minutes contemplating its navel. Eventually, eventually, we off’d and eventually, eventually, eventually we arrived in Bali. 17 hours in total. Singapore Airlines does it in nine. That’s why it was cheap.

17 hours of sitting fairly upright, fighting with noisy neighbors, was not what my neck needed. Pretty painful and it got worse as I relaxed into the island lifestyle. The outcome was I spent Friday, Saturday and Sunday bed-bound while filling myself up with copious amounts of painkillers. I like painkillers. However, by Sunday night I was feeling better and today (Monday) I feel great again. I’ve even got my appetite back.

Make Clive Great Again. Fingers crossed, eh?

C7: THEY DON’T LIKE IT UP ‘EM

First published: 17 Jan 2017

Survey says … no answer!

Not yet, anyway. The endoscopy (down) and the colonoscopy (up) are done. The pictures are fascinating, but they reveal no lurking community of cunning cancer cells sending their conniving compatriots into my neck. So, the next thing is lungs.

Remember the really old-fashioned butcher shops? The ‘family’ business ones? The ones which had your order cut, weighed and wrapped before you actually crossed the road and entered? And threw in some scraps and free soup bones for good measure? The ones whose dog was less fit than anything you cared to compare it to (I’ve never understood that analogy?) They sold offal, including sweetbreads, things which are very difficult to come by these days, but were cheap and nutritious – always a bonus – as well as being extremely tasty. Sweetbreads are specifically the organ meat from the thymus gland and the pancreas while the rest of the offal family comprise the internal organs and entrails, in fact, anything which is used as food except for skeletal muscle. Haggis and black pudding are still popular recipes but people shy away from most offal-y stuff nowadays even though they are really scrumptious. Knowing modern farming methods, they are probably fed back to the relatives of the donor animals which produced them.

Liver and kidneys are the most acceptable, but brains are great if they’re gently sautéed in butter and cognac, a la Hannibal Lecter. The taste is exquisite. Lecter, of course, was an offal gourmet. His famous line, “I ate his liver with some fava beans and a nice Chianti,” played on his medical disturbance, a malevolent subcategory of an antisocial psychopathic disorder. This can be treated with monoamine oxidase inhibitors (MAOIs) but there are three specific dietary components which are banned during MAOI treatment: liver, beans, and wine. The good doctor hadn’t been taking his meds.

Lungs are part of the offal group. Haggis is heart, liver and lungs, ground up and mixed with onions, oatmeal, animal fat, spices, and salt, then boiled inside the animal’s stomach. Yummy. India has a delicacy presented as goat lung and liver masala curry. Leaves you breathless, eh?

Lungs are our next port of call for the primary cause of the tumor. Normally no news would be good news, but as we are peeling away layer after layer of possibilities, no news simply indicates that the problem is deeper than first anticipated. The lung guy is expected soon.

Food is on the agenda today because it was off the agenda both yesterday and the day before. I admitted myself on Sunday morning but, starting Saturday afternoon, I was confined to a ‘low-fiber’ diet and then, from Sunday morning to liquids only. Guinness and dark rum were obviously on the banned list but so was anything else that was of a dark persuasion. Only insipid, clear, boring, weak, wishy-washy, uninteresting, and dull stuff, which by taste was unsavory, and by definition was flavorless. Their best shot was Dal soup which is lentil. I love real lentil soup: thick and gooey, for Christmas starters, drizzled with real cream and lots of black pepper, but this was cold yuck. I told them not to leave any razor blades lying around or I could be tempted. Then they added the laxative.

My prior knowledge of laxatives was restricted to small tablets which gave you ‘the runs’. This was two liters of foul-tasting, opaque liquid which had to be drunk within an hour. Two liters. Two liters! TWO LITERS! TWO LITERS!

And then ……… nothing. Not a thing for ages. No gurgling. No rumblings. No eruptions. No screaming, ab-dab emissions threatening to disrupt the known Universe. Simply peace and calm. The stuff is called Peglac, a combination of polyethylene glycol and electrolytes and its role in life is to ‘lavage’ the gastrointestinal tract. Lavage: nice word. Peglac: awful liquid. It’s supposed to come in two flavors but the stuff I had tasted just like its intended target!

<Breaking news> … and there we may have it, as we speak, live reporting. The lung guy just came and he’s found a “consolidation” on yesterday’s CT scan in my lower right lung, so he needs to speak to the radiology guys to see if they agree and then probably do a biopsy. This would be a needle thrust between my ribs and poked around until he finds a nice piece of offal with which to play. More later </breaking news>

The steely knives have receded. Boy, they were nasty. Worst yet. All day Sunday, all night and then all day Monday till about 3 a.m. Now it’s bearable. Still there, but bearable. While they were at their steely height I was sitting on the edge of my bed, holding my head in my hands and rocking while mumbling to myself. A dietician bounced in and cheerily asked, “How are you?” If he understood my answer, I’m sure he didn’t like it. Strange bunch, dieticians.

The camera work was not as bad as anticipated. For some reason, I was anxious, whereas the very serious neck surgery didn’t bother me at all. It is a bit odd though having tubes down your throat and up your ass when you’re fully conscious. And, as I said, survey says … no answer.They did find a whole raft of ulcers, some small, some large, some shallow, some deep. And one which looks like a subterranean cave of nuclear submarine proportions. No pain, no bleeding, no irritation, so they should be easily treated. Probably caused by all the painkillers I’ve taken. A minor distraction from the elusive little bastard of the cancer.