The long slog

When we first discussed the course of treatment I was going to follow my surgeon warned me that for every week of radiation it was going to take a month to recover. So sometime in April 2014 I should be feeling like my old self. Jeez.

I can’t begin to tell you how depressed I am after being discharged. In hospital you don’t have time to think about your lot. There’s always somebody coming in who wants to draw blood, or change some drip, or give you meds etc. Now at home the reality of how I felt hit hard.

My neck had a lot of burns from the radiation so that was fun for the first ten days or so – looked really gross too. That has cleared up now and my skin is as smooth as a baby. I hardly need to shave. I have some odd hairline at the back of my head. I haven’t bothered looking as I just don’t need to. Oddly, both my eyebrows have gone nuts and now I sport these curly old man eyebrows that shoot up into space. My hands shake more. They always shook but now it is very noticeable.

I still cannot taste or smell anything. Well I can but it is totally unrelated to how they really taste. Everything can have an odd chemical smell, everything. I try little niblets of food to see how they taste but they are usually foul. My saliva glands are shot so as soon as you put something in your mouth it dries up and makes it very hard to swallow.

My jaw, unless I am careful, can be clenched tight all day Something to do with the radiation and the surgery. I try and remember the exercises I need to keep it working right. That and the burns inside my mouth have changed my voice. I am much quieter and don’t seem to have the range i remember.

Maybe the worst of all is that i have to feed myself through a PEG device. Basically this is a tube that goes into my abdomen and through to my stomach. I feed myself a liquid food three times a day. That is what is keeping me going. I can have it removed after two weeks of only eating via my mouth. I pray for that day.

So there we are, the current state of affairs. I have started seeing a therapist and I have an appointment with a psychiatrist next week. I feel better today than the day I left hospital, but I still feel nothing like normal. I keep on having to remember that recovery takes time.

Oh the upside. I have lost over 50lbs. None of my clothes look right. We went to Nordstrom Rack yesterday and I got two beautiful jackets and two shirts. I have lost six inches round my waist. I look marvellous.

Loony Tunes

I haven’t been keeping up here as I have been in hospital, in bed or just couldn’t get the energy to write anything.

So much of October was a blur. They upped my painkillers and also upped my anti depressants which resulted  in serotonin syndrome. That is my diagnosis. At night I would start to hallucinate and be very confused. For three nights in a row I believed I was either in a South American guerrilla camp, in a German camp in South America or being held by the CIA. I would lie in bed and be terrified of the nurse who walked by or sometimes came in as I thought they were guards.

One night I tore out my IV and some other tube. That ended up with a rigorous struggle between me and three nurses trying to get an IV back in. I swear I hit one of the male nurses. It didn’t help that he had a foreign accent – this was in the German camp.

After one delirious conversation with a nurse I grabbed her round the neck and drew her close to me and said something like “I know I am going insane. You can tell Eva that it’s ok.” That was a very low point because I truly believed I had gone insane.  One time I was at home and I was convinced our house was connected to a Mexican Fast Food joint that was involved in the cocaine trade. A traumatic night not only for me but for Eva and it pains me to think how much I upset her. We made an emergency visit to the ER that night and I was hospitalised..

One day, very upset, I told Eva to call an ambulance. I was being poisoned by a spray we use on  dog housebreaking accidents. I begged her to throw the spray away. Another trip to the ER and once more a stay in hospital.

When they finally worked out what was going on I was really angry. As far as I was concerned there was no need to up my anti-depressants, God knows I was too dopey to really care. Once back down to earth I had a very frank exchange of views with the Psychiatrist and her cadre of students that followed her around.

Finally I was pronounced fit to leave and I did before they changed their mind.

Drastic measures. Something old. Something new.

IMG_2038When Iced tea looks like a fine whiskey you cannot help being tempted no matter how many times you have splat ice-tea from your gob saying “Plechewey!”

Equal parts red-bush ice-tea and San Pelligrino or any seltzer. A splash of Ribena or any berry cordial. Serve over ice. Mince around wistfully. Waiting for your need to evacuate with your arrival at the throne.

How long have I had one of these French? Italian? Jug things? Twenty years? More? How come it took till today to realise that pushing in the inner part of the cap creates a so-so vacuum seal. Even though I did wash the cap I wish I had washed it better. Looks marginally grubby around the edges. Like its owner.

Even when you can’t smell you do…

I thought I had written more here but in fact had only come up with a title.

I think I have entered the battle phase of my sickness. For about a week now it has been harder and harder to eat. My throat hurts when I swallow, but the worst is the smell.

When you bring food to your mouth the Medulla Oblongata, i.e. the lower half of the brain stem, get’s all jiggy from food-related sensory input. The feel of food in the mouth or thoughts related to food send signals to the medulla to stimulate the release of pepsin and hydrochloric acid, both stomach chemicals which play a critical role in the digestion of your baconeggandbean burrito.

But what happens when your Medula gets all all spazzed out by the cancer meds? In my case every time I bring food near my mouth I smell this smell, this nauseating smell, which turns off my yum-yum food receptors and turns on my stand-back-this-dude-is-going-to-puke alarms.

I have a theory.

Because of drugs and or surgery, my  taste & smell tackle has been effectively closed down. However I theorize that there is a fundamental, basic – if you like, odor and taste on which others are based.

This rudimentary taste, let us call it that pukeydeadhedgehog smell, is the only thing you smell. I was filling up with Costco’s 93 octane the other day and I took a whiff of the gas/petrol and even it smelled of pukeydeadhedgehog. Petroleum products, as you know, have a very strong odor mostly because they are made from gigantichedgehogs. But my own pukeydeadhedgehog smell quickly over-rode the other, prehistoric, smell.

So this is where I hypothesize more… Except I can’t because I feel like shit, my brain hurts, my throat hurts, my skin is dry, I am constipated, I find it hard to swallow, I can’t remember the last real meal I had.

Thank God there is a gradual build-up to this stage. If you just went from well to this you surely would end it all right immediately! But there is a build up and it creeps up behind you till you get to this day.

Thankfully this too shall pass. And within a month or so I’ll be eating and drinking and singing ancient songs of my people that tell tales of giant hedgehogs and their inevitable demise.

And I’m svelte – did I say that? Shit yeah.

Protect your energy reserves.

The Pyronian craft hovered over the radiation department of City Hospital. The massive energy reserves in the Hospital’s nuclear-imaging banks drew Pyronian vessels like Craton sledders to a bucket of mushmeal.

Of course few, except those in a position of authority, knew this. The Pyronian’s cloaking system rendered them almost invisible. If you were to look carefully you might see a tiny schism in the sky – a small hard-edged buzz of static, but it disappeared so fast you’d put it down to the weather or a bothersome floater on the surface of your eye.

This stealth, this spectral existence ensured Pyronian hegemony in the skies. Let the Krats, Bulgons and Humans fight over diminishing reserves on the ground. Pyronians cared little for terrestrial affairs all they worried about was extra-terrestrial, extra-violent and extra-expensive.

I greeted the guard at Hang-Stop IV. “May your bladder float you and your kin for many years.” He was a Bulgon. A flappy, balloony, unimaginative race; the Bulgons have held lowly, security positions since the first wave back in ’07. But to give them credit they are stoic guardians who would rather die than forfeit even a meter of our blood red dirt.

“Move on in peach citizen!.” Responded the Bulgon. Almost correct, but I didn’t want to draw attention, so I nodded and moved on, over the Gradean Perimeter, into Obamar. In peach.

Damn you human-murine chimeric monoclonal antibody!

spotty

This happened almost over night. Day one I was a wee bit zitty. Day two brought mega-spotification. It looks worse when I see it in the mirror and angle my head to get the light just right. In fact this picture doesn’t do it justice at all. It’s much worse!

This is one of the side-effects of my chemo therapy. Cetuximab is an epidermal growth factor receptor (EGFR) inhibitor. Cancer causes cells to divide uncontrollably. Cetuximab turns off the uncontrolled growth. However the mechanism causing the skin problems is the same as the mechanism that suppresses the tumour. In other words if you want a belt & braces (suspenders) approach you have to live with the acne.

Sadly some patients would rather stop treatment than live with the rash. Luckily for me I blog about it and that makes me feel better. My only problem is that I want to explain it to people.

“I don’t normally look this spotty. I have cancer you know. Why are you looking at me like that?”