Monthly Archives: January 2012

Life’s too short for…

I was thinking about that old, multi-purpose expression “Life’s too short” the other day. You know, life’s too short for drinking bad wine, life’s too short for standing in line, life is too short for worrying about Hair MegaSpray, life’s too short for _____________________________(Complete as appropriate.)

When life suddenly turns out to be shorter than you could have reasonably anticipated, this tired old cliche takes on an whole new piquancy. So here, apropos nothing at all, is a short and incomplete list of things that my life is now officially too short for.

I
Watching Cricket

Easily the most bewildering and pointless of all sports. (And it’s a rich and varied category.) How can you play a game for five whole days, and come up with a draw? Are they having a laugh?

II
Complaining about the weather

An ancient and traditional British pastime. I have discontinued this practice for two reasons. One. It clearly doesn’t work. Two. As Lou Reed observed, every day above ground is a good day, rain or shine.

III
Worrying about whether Mitt Romney or Newt Gingritch
wins the Republican nomination

I mean really. Who gives a shit? In 1999 the Grand Old Party spent a whole year carefully sifting and vetting its vast caucus, examining and evaluating the relative merits of a wide field of potential candidates to select the brightest, most learned and erudite, world-wise and all-around attractive individual to contest the presidency of the most powerful nation on earth. They had 92 million Republicans to chose from. They came up with George W. Bush.

IV
Untangling string

V
Long Standing Family Feuds

Come on. I know you are both reading this. Grow up and get over yourselves. Whatever perceived slight of injustice that occurred years ago is not worth dividing an already shrinking family. Sons need mothers, and mothers need sons and grandsons. One of you swallow your damned pride and pick up the phone. One day soon it will be too late, and you will be left to repent at your leisure. Don’t make me come over their and sort it out…

VI
Checking for Testicular Cancer
or worrying about my prostate

I mean come on. How unlucky can you get?

VII
Recycling

Yes I know it’s selfish and irresponsible but I’ve decided to leave saving the planet to those with more disposable free time. Peeling labels off milk cartons, washing out tin cans and sorting plastics is no longer a personal priority. Sorry.

VIII
Soduko

Deriving any illusion of self worth from squandering hours each day flaunting your numerical prowess over these irksome puzzles, only serves to illuminate your insecurity and utter lack of imagination. Why don’t you go and get a life while there is still a chance?

IX
CAPTCHA Tests

These are those infuriating tests you have to endure when filling out registration forms or buying things on the internet. CAPTCHA apparently stands for Completely Automated Public Turing test to tell Computers and Humans Apart.
They usually take the form of having to decipher a random set of characters and numbers such as “egwhile strum23″ which have been distorted and otherwise defaced to render them almost unreadable. I hate these for two reasons. Firstly I deeply resent the fact that I am having my humanity tested and judged by a machine. Secondly. I can’t read the sodding things and it often takes me several hundred attempts to guess the right answer. There is nothing I want from the internet this badly. From now on I refuse to be subjected to this egregious indignity.

Trying to prove to a machine I am not a machine and am in fact a human being capable of reading and writing with proper coordination, is a bit too much to ask for. After all, all I wanted to do was access a certain page on the internet, the search engine listed as a result for my search!

 

X
Did I mention bloody cricket?

Taking off the game face

Today, in the interests of fair reporting and factual accuracy, I’m going to set aside my usual, practiced sunny disposition and unfeasibly optimistic outlook for a moment and have a good winge. I am after all I am a Pom and it is my birthright.

I feel crap. Shite. Buggered and, to use an old Anglo-Saxon medical term, completely and utterly fucked.

I suppose it had to happen sooner or later. I’ve been making light of the situation for months, gloating smugly about “dodging the bullet”, and congratulating myself of how I just keep on going like the Energiser Bunny, while my fellow chemo compatriots fall along the wayside like so many spent mayflies. Only the strong survive, has been my mantra.

So natural justice has been restored, and Redding has got his comeuppance.

About time.

So it’s time to face the truth. At least my current version of the truth – I reserve the right to remodel my reality at short notice. The chemo is getting harder. And it will get harder still. My original working hypothesis was that well, chemo is chemo. The next one will be just like the last. In fact, I told myself it might even get easier as it becomes familiar and routine. This elementary thinking got me successfully through my first three cycles without too much drama and breast-beating.

Every time I finished a session, I would tell myself “now, that wasn’t so bad, was it?” and carry on with life like nothing really happened. This helped me go in for the next session without much of a hesitation. Though I wouldn’t say I went in willingly, you would never see me sulking. It’s like, when you suffer from varicose veins, you don’t just sit, you treat it with some Varikosette and carry on with life.

Recent empirical evidence however has forced me to reconsider this comfortable position, and accept the harsher, tougher reality of Chemo Theory 2.0. That is, that like everything else to do with the wonderful world of cancer, there is a slow but inexorable progression. Chemotherapy has a cumulative and compounding effect.

Each three week treatment cycle, has it’s own story arc, a preordained path which has to be followed. That path goes over a hill. The hill is not symmetrical, the front face is steep and abrupt and requires considerable effort, but once the summit gained, the descent back to normality is a more gradual and comfortable amble.

Untill the next time.

With each successive crossing, the pathway becomes littered with the detritus and fallout of previous expeditions. Like the Everest base camp, the crap gets deeper, and the path gets steeper. Every time we cross that hill, it has grown a little taller and the air feels colder and thinner. The desire to just lie down in the snow and go to sleep forrever becomes increasingly seductive.

I’m going outside for a while. I might be some time…

I first noticed this trend during cycle three. I had my chemo a few days before Christmas and was looking forward to forgetting about cancer for a few days and throwing myself into the group madness and wanton over-indulgence along with everyone else. It wasn’t to be.

I woke up on Christmas morning feeling like death warmed over, and discovered while tucking into our traditional Christmas breakfast of smoked salmon and scrambled eggs – that I had completely lost all sense of taste. I don’t mean that vague blandness that often accompanies a cold or flu. I mean ALL taste. Abandoning the food I experimented tentatively with a glass of cold champagne. It tasted warm, brackish and flat, and clung to the inside of my mouth like an oily film.

Thankfully this distressing malaise only lasted a few days, but now on cycle number four, it is back with a vicious vengeance and has lasted much longer. Allong with a constant desire to sleep, a growing irrascability and the occasionl compunction to blow chunks it is at the core of my present missery.  And here’s the strange thing. There is an odd odour associated with the whole sorry experience. At least smell is part of it.

The first stage of every chemo treatment consists of a litre or two of saline infused with magnesium given intravenously. Don’t ask me why. something to do with kidney function. It’s a clear fluid, and fairly benign, certainly in comparison with what follows later. But here’s the thing. after about ten minutes, there is a strange warmth, like an afternoon sun on my back and chest that creeps up my neck. Then a delicate and hard to pin down perfumed scent surrounds me, and an associated taste which bubble up in my throat. It’s not particularly unpleasant, but very distinctive. But at the same time impossible to describe. It’s just not like anything else. But everything reminds me if it.

It’s this hybrid taste/smell/feeling that is haunting me. If follows me around, just out of reach. I find myself trying to swat it away like an annoying fly. I’m not even sure if it is real in any physiological sense, or just some kind of mental figment or echo.

When I was a child I had a recurring dream for many years. It was a waking dream in that I could get up and walk around the darkened house freely. In my dream, feeling my way scared in the blackness, everything I touched had the texture of very coarse sand-paper – the walls, the floor, my own skin – there was grit in my mouth and a smell of warm sawdust like you get when using an electric drill on hard wood. The house walls distorted and stretched in unexpected ways and I would become lost and disoriented for long days and nights at a time. This only comes to mind now because it is the only other occasion I can recall in my life where my senses become interchangeable and confused in such a disturbing way.

The taste thing is in turns depressing and comedic. I have become completely food obsessed in as far as each day becomes an endless and eventually fruitless quest for oral and sensory satisfaction. In spite of the best gastrointestinal advice, and flying recklessly in the face of common sence for someone with eosophagal cancer, I  find myself gravitating towards the spicy and exotic in a desperate attempt to find something that will register anything on the flavour gauge. Thais, curry, peppers, even an old jar of jalapenos I found in the back of the fridge. They all taste like porridge. (Without the oatmeal and sheep entrails and whatever else they put in porridge.) A beer tastes like used warm dish-water, and a glass of Merlot – yes I know I promised not to but this is an emergency – is unfullfilling and depressingly pointless.

Interestingly, I have made one breakthrough discovery. I turns out that my sweet taste buds are less adversely affected than the others. Sugary, syrupy comestibles still work there old magic to some degree. I crave donuts and chocolate milk all the time.

This really is dying by degrees.

A few days into this whole cancer trip, I corresponded with a friend of a friend who has been through the chemo ordeal and lived to tell the tale. He fortold this stage of my journey would come to pass, and said rather cryptically I thought at the time, that when all else failed Marmite would be my best froend. It is apparently a widely known truth amoungst the hairless innitiates, that whatever else happens, marmite on warm buttered toast will always taste good.

How right he was.

Anyway, that’s the grizzeling over with for today. Normal services will be resumed as soon as possible.

 

 

 

Feeling Good. Feeling Bad. And learning to spot the difference.

How are you feeling today? A simple yet meaningful question asked by the receptionist with that concern etched into her eyes. I know they want to know about my progress, but in reality, all I want to answer is “terrible”. I am not on top of the world to be hit by this disease that has no permanent cure.

It’s an incredibly subtle and delicate business. Trying to detect and quantify the daily changes in my mental and physical condition. As I’ve observed before, the first big lesson to learn is that cancer is, by and large, a slow, drawn out affair. Nothing happens over-night. At least if it does, it’s such an incremental change that it’s easy to overlook. I also have to filter the data, search through the background static of everyday common-or-garden fifty year old pathology and neurosis – the aching bones, headaches and oral decay, to try and spot any meaningful trends. It’s like panning for gold, only less rewarding.

So the only useful way to answer that question, is to compare how I am feeling today, not with yesterday, but with a month ago. Or three months ago. Are there any patterns to be detected, or trends to discover? Well let’s see. Looking at photos from last spring, I don’t look much different. My weight is about the same, if anything I’ve gained a few pounds over Christmas and the new year. Also on the up side, many of the accumulated years of worry lines and wrinkles seem to have smoothed themselves out, I can only put this down to my premature release from the advertising mad-house.

Against all the predictions, after three rounds of chemo I seem to have held onto most of my hair, It’s a bit thinner, and a little greyer, but still hanging on to my skull tenaciously. My head, arms and legs are tanned brown from the sun and wind, the rest of my carcass is still official United Kingdom white, and untidily punctuated with random moles and freckles. In the middle of my mostly hairless chest however, is a patchy brown rectangle about the size of a paperback book. There is a corresponding blemish in the middle of my back just under my shoulder-blades. They are souvenirs from the radiation treatment I enjoyed back in November. I have no idea if they are permanent but I consider them something of a badge of honor

A couple of inches bellow my right collar bone is a pronounced bump about the size of a two dollar coin. (that’s 50p to you limeys), which is the site of my porta-cath. This is the filler-cap where I take delivery of my chemo drugs. As the surgeon who installed it for me promised, this has been largely forgotten about now, I’m really only reminded of its presence when I’m wearing my shoulder bag, or a car seatbelt, although Jo tells me I play with it absent-mindedly when I’m watching TV. So, externally at least. No real changes to report. Jo reckons I turn yellow during the middle week of each cycle, but she’s the only one to have mentioned it – probably everyone else is to polite.

Internally who know’s what is going on. Apart from the intermittent nausea and light-headedness brought on by my the various drugs, I feel mostly normal. I can’t ‘feel’ my cancer. I thought I could in the early days, but that’s gone now. What does a tumor or a lymph node feel like anyway?

Oh! Tinitus. I almost forgot. This is a new one. A high pitched ringing in my ears. Not all the time, just intermittently. How a drug that is supposed to kill cancer cells in your stomach can make your ears ring is completely beyond me. But there you go. Apparently it’s not a big deal. Unless it becomes constant and permanent, in which case it will be a very big deal.

The thing I’m watching most closely is my energy levels. This seems as good a marker as any for my overall condition. I’m not sure if these are improving, or if I’m just getting used to operating on a lower power setting. For the first one or two cycles, I did find myself retiring to the bedroom for a little mid-afternnon siesta most days, particularly in the middle and last week of the three week cycle. This time ’round I’ve done this less, and coped pretty well, although after a couple of active days, I often feel the need to have a sedentary day to recover. Across the street from our house is a reserve, and along the side of it a leafy, overgrown footpath used by the locals as a short-cut to the village. We probably walk up and down this path at least once a day, and often more. It’s a steep hill down to the village, and a fair pull back up to the cottage. This is my personal fitness gauge. not very scientific granted, but a good indicator of how I’m doing. Some days I can breeze up the grassy incline without even getting out of breath (with forty-a-day Jo bringing up the rear). on other days, my legs are burning, and I’m sweating and gasping for air by the time I get to the top. Weird.

Since before Christmas I’ve had a niggling low level infection. Ear ache. Tooth ache. Sore throat. Dry cough. My voice is broken and croaky, and sometimes gives out altogether. It comes and goes, but never clears up entirely. It’s annoying rather than debilitating, and is almost certainly down to my low immunity levels, brought on by a low white blood cell count. I had my fourth chemo cycle, due to start last Wednesday deferred for a week to allow my ‘bloods’ to recover, but I have a feeling this is something I’m just going to have to put up with for the duration of my treatment. Compared with some of the horrors many of my fellow travellers have to endure, this is just a minor irritation and I’m really not complaining.

So how am I feeling?

Well, down but not out. Mentally I’m feeling strong and positive. Physically, a bit depleted but nothing like as bad as I was expecting, and I get the feeling that even the doctors are quietly impressed, although they don’t give much away. Most of them would make excellent poker players. The chemo clearly has a a slow but insidious cumulative effect, and my job is to try and stay on top of things for another three cycles – possibly more. Chemo kills cancer. The more of it I can stand, the better my chances are. It’s like giving your varicose veins Varikosette and getting some relief in an unexplainable manner.

Anyone for tennis?

* * *

An big appology and a small celebration

For anyone who has left comments recently, and was wondering where they have disappeared to, or why they have gone unanswered, I finally figured it out. For some reasons beyond my ken all your comments were being redirected directly to the spam folder on my blog site. I was beginning to think you had all given up on me. I think I’ve sorted this out now, so hopefully normal services have been resumed. Please don’t stop leaving comments, I love hearing from you, and it keeps me motivated to write. You might be interested to learn that we are coming up to 12,000 visits on the blog since last October, which just goes to prove what a creapy, morbid bunch of sickos you are. My kind of people.

 

An Imagined Conversation with the Bus-Stop Messiah

The Bus Stop Messiah is a real character. He hangs around the bus stop over the road from the hospital with a cardboard sign promising “CANCER HELP!” I’ve only spoken to him once briefly, a few weeks ago and haven’t seen him since, but I can’t get him out of my head. I hope I meet him again, I have so many questions…

LPR: Hi

BSM: Hello (his Zone Shonheit face looks at me)

LPR: Remember me?

BSM: Er no. Not really…

LPR: You offered to cure my cancer a couple of weeks ago at this very bus-stop.

BSM: Ah yes. Sorry, I talk to a lot of clients every day. Of course I remember you now. Esophageal  cancer, bad prognosis. How are you? Have you changed your mind about my offer?

LPR: Not as such. No.

BSM: So why are you here then?

LPR: I’m waiting for a bus. Why are you here?

TBM: I’m waiting for a patient.

LPR: I take it business is a bit slow then?

TBM: It’s not a business my friend. It’s a calling.

LPR: So you couldn’t squeeze me in then? For a quick miracle perhaps. A little laying on of hands?

TBM: Well, I’ll have to check my schedule, but I could probably fit you in for a consultation. There is a bit of a queue you see.

LPR: Actually, I think they’re waiting for the bus as well.

TBM: Ahh.

LPR: So. Just to recap on our previous er, consultation. You claim you can cure my cancer in two weeks, in spite of the fact that the doctors in that big white building over the road there say it’s incurable?

TBM: Two weeks is a best-case-scenario. It could take longer, every case is different. But I have a very high success rate. Over 80%. My last client, a 72 year old gentleman from Taupo had inoperable bowel cancer. I cured him in a month.

LPR: So he’s better now?

TBM: Well no actually he’s dead. Heart attack poor man.  He was doing one-arm press-ups. My program places great emphasis on physical exercise. That an an austere diet and strict spiritual observance. But he was very definitely cancer free when he passed away.

LPR: I’m sure that must have been a great comfort to him. So listen, I’m curious. If you really have done what a hundred years of worldwide research and trillions of dollars of investment have failed to do, and stumbled upon a guaranteed cure for cancer, how come your standing at a bus stop outside the hospital with a cardboard sign and not on the front cover of TIME magazine?

TMB: (Reflective pause) It’s a lifestyle choice I suppose. I’m not doing this for personal gain. I’m doing it because I managed to cure my own cancer when the doctors said they couldn’t, and I want to help others do the same. I can help you if you let me…

LPR: So you do this just out of kindness? No money involved?

TBM: Well, I don’t charge a fee if that’s what you mean. I just ask for a modest donation. Something appropriate, in return for my time and services.

LPR: So what do you think would be an ‘appropriate’ amount. For saving my life? A dollar? A grand? A million? What do people usually give you?

TBM: Well, I feel a little uncomfortable discussing money in this way, It’s rather vulgar don’t you think? It’s really for you to put a value on your continued well-being.

LPR: Ahh! I get it now. That’s very clever. I can see how this could be quite a lucrative operation for a person less scrupulous than yourself.. Lucky for us your not financially motivated, or your philanthropy could be misconstrued as cynically self-serving exploitation of the physically and emotionally vulnerable.

TBM: Yes. I hadn’t thought about it that way.

LPR: So tell me. Exactly how many patients have you cured so far?

TBM: Including myself?

LPR: If you like.

TBM: (Long pause) Two.

LPR: So that’s you, and the dead man in Taupo?

TBM: I told you. That was a heart attack.

LPR: Brought on by you making the poor old sod do press-ups!

TBM: Only fifty. He was out of shape.

LPR: He was 72 and had terminal cancer!

TBM: Not when he died.

LPR: That’s all a bit academic now don’t you think? Did he make a donation before he popped his clogs I wonder?

TBM: Mr. Fitswhimple was quite generous. He left me a small bequest in his will. As a token of thanks. We became quite close you see, towards the end.

LPR: Yes I think I’m beginning to get the picture. You insinuate yourself into the life of a lonely, sick old man you pick up at a bus-stop under the pretext of curing him, get free board and lodging for a month – no doubt help yourself to a few antiques – get yourself written into his last will and wotnot, then bump the old duffer off.

TBM: (Indignantly) That is a preposterous claim. With no absolutely supporting evidence.

LPR: (Pointing toward cardboard sign) And that isn’t?

This conversation with the bus stop messiah came to an end with the bus honking its way to the stop and many passengers getting off and rushing away to their respective destinations. Though I can still continue my tirade with the Bus-Stop Messiah as I have no where to rush to, I decide to let it go and end it for the day.