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?