Signs of the Time

Good Evening Skywriters By Word of Mouth,

recently I've been into putting up signs about the place. Some of this is practical, and others, well, whatever takes my fancy at the time.

I made the mistake of finding and buying a pack of blanks for turning photos into fridge magnets. I also made the very silly step of starting chemotherapy.

So in some cases I've simply been having fun with all of this sign making, and in other cases I need to put up real reminders, warning me of things I'm supposed to do whilst undergoing Chemo.

So here are some of the more practical signs having to do with Chemo.

Here are some rules and warning signs I have to follow. I put this up on my pantry cupboard, making it quite prominent in the kitchen.

One of the most important here is to take my temperature (which I note in my log) and be prepared to drop everything and head to hospital if my temp hits 38 or over. Last week I had an upper respiratory chest infection and that almost triggered the hospital alert - sufficiently that I went and dug out a little trundle-along suitcase, ready for packing.

Another sign I put up is in the dunny. Apparently for a time, the chemotherapy makes my bodily fluids toxic. As I've mentioned before, I'm not sure what this toxicity might do - but is enough for me to get warnings in the cancer documentation and from nurses quite a number of times.

It also changes the way the community nurses, who come and change the dressings on my head, get ready to do that.

They're not always that scary ;-)

And I made a sign to remind them of what to do ...

The last instruction is the most important. Who knows what might happen when I'm toxic? Turn into a giant green angry quasi-superhero?

(Yah know the scariest thing about this image is that I had no idea if such a thing existed. I just typed "barack obama as the hulk" into Google - and sure enough, there they were. Teh Interwebs really do have something for everything and everyone. Now that IS fucking scary!!)

Again a sign like that needs to be prominent, so I put it up above the box of dressings that the nurses use.

Now to the fun that I've been having on the fridge with my fridge-magnet blanks. I've only done 2 so far, and made up another sign on some new photo paper.

 

Here's one that I made using a scan of the warning on one of my Endone boxes.

 

Now that warning is being put to a much better use. Guarding my Chocolate supply ;-) Fuck the champagne, lobster and caviar.

Now here's one that I made today. I've started to make more extensive use of my heat pack to try and control the cancer pain - which seems to be getting out of control again in the last few days.

 

Overall it seems to be working, taking the edge off the worst of it in my jaw, and sometimes I get it right under the dressings close to the cancer itself. I like this shot. I truly am enjoying this moment of Comfort.

Finally I was playing with some new 5 x 7 inch sized photo paper - and it seems great for small durable signs.

 

This is a rip-off of one of the more common slogans that you can buy in new-agey sort of shops, or just really fuckin' tacky newsagencies. It normally starts with "God" but I've gotten into the habit of using "Goddess", just to piss off fundamentalist Christians.

I had one printed on plain paper which actually survived many years of house and flat moves. But a search found that it had slipped into a wormhole and disappeared. So I made this nice pretty new one.

Hmm, there seems to be quite a theme in some of these signs that I'm making. Just don't piss me off at the moment. I dunno what will happen, but I've been going through a shitload of weird stuff - so fair warning. It's not every month that you get a death sentence...

... and you seem to be expected to to take it well. You better hope (I better hope) that the shrink I'm seeing on Thursday is good at her job ;-)

The Elixer of the Mud-Gods

G'day Chemistry Set Experimenters,

people have been making jokes to me over the last few months that I should try eating weird stuff because my sense of taste is on the blink (not working) for now.

Suggestions have been things like broccoli and brussel sprouts. It's actually sort of tempting just to see what the texture is like. But the taste itself is likely to be one big nothing with a vague sweet/bitter/salty/sour/dirty-dish-water/mud after-taste (I think I got the list of basic tastes right.)

You might have guessed by now that the best of my taste senses is actually sweet. Which is at least some small consolation.

Official Health Food for Me!

And my Dietician at the Hospital doesn't really care too much what I eat, as long as there's plenty of protein and I'm not losing weight.

When was the last time you got permission from a health professional to eat a fuck-tonne of ice cream, chocolate and marshmellow if you wanted??

Bitter sort of works a bit too. My dietician however, still doesn't really get the whole lack of taste thing. Aside from these hints of sweet and/or bitter - NOTHING has a taste! It doesn't matter if I add Habanero chilli sauce instead of tomato sauce to my pie. It's all equally bland, except that the Habanero will burn the fuck out of my thrush weakened gums - and pain I can feel!

Stupid Git! (Does "Git" apply to a Woman? Gitess, Lady-Git, She-Git?)

As I explained in a previous post - playing with interesting textures is generally the best I can do.

Today I bought some honeycomb to try. Not bad! That crackly-popping feel is a bit of fun. (Alas it was the choc-coated artificial stuff - not wot came out of Neil Gaiman's beehives.) At the very least I must hunt up some Violet Crumble bars.

Slippy-sloppy-slurpy Goodness

I also bought some Cup-a-Soups. The main reason is that they would probably make an interesting hot drink. I was right. The slippy-sloppy-slurpiness of the noodles in the chicken noodle variety was fun and palatable - and hot.

Bliss!

Given the way the temperature's suddenly dropped in the last day, causing me to tense up more, especially in my jaw/head, and in turn generate more pain, hot drinks are something that I will need more and more. It's a recipe for pain relief that you don't find in the literature.

Microwaveable heat-packs are in the documentation, and have been very useful in the past 24 hours.



Now - to one of the most daring experiments that I've performed since I overheated and blew up a test tube with jet-powered force, and exploded the contents all over the lounge-room ceiling at the old family home.

(I numbly went downstairs to my parents and asked for a ladder ;-) That shit soaked into the plaster and no matter how many coats of paint that went over the stains, they just ate their way through. My father built a bench area under the house where I could continue my Chemistry-Set fun and games.)

I DRANK A CUP OF COFFEE!!!

You should know (if you already don't) that I HATE Coffee.

I hate the smell of it. I have to take and hold a deep breath if I walk past a coffee wholesale store in Newtown. Only a Fishmongers is worse.

I hate the taste of it.  Even small amounts in foil-wrapped gift chocolates. Dis-gusting!!

I hate those smug gits that think they're so fucking sophisticated with their latest boasts about sipping ethical-borneo-jungle-shitted-out-by-a-cat-turkish-blend-greek-ground-italian-poured-latte-macchiato.

As such I haven't drunk an entire cup of coffee since I was a teenager.

BUT - I have no sense of taste! Time for an experiment.

I suspect this is a cup of coffee.

I found the jar of Moccona instant coffee that I have hidden in the back of a cupboard for visitors and an old coffee cup. I boiled water in the electric jug and not so carefully blended the ingredients until I came up with a cup of hot steaming black stuff.

That's how you make coffee isn't it? It's been a while.

I let it cool down a bit (a lot really) as my mouth is not used to hot drinks.

Slowly, with much trepidation, I bought the cup to my lips and took a sip,

Bugger - not enough to get get any real sense of what I had just done. I lifted the cup and took a larger sip.



It was as I suspected! If I had ever tasted muddy water, then this was it. It wasn't totally foul, but neither was it some magic instant pick-me-up.

Crazily addicted? Probably not yet.

It was as to be expected - tastleless with a hint of bitterness. I added 2 sugars. No real change. I added 2 more. Mmm, perhaps a little better. So I decided to see the experiment to its logical conclusion. I slowly drank it all. It took about 5 minutes.

Whilst there was no obvious magic caffeine energy burst, it was quite a while before my evening drowsiness came on.

So I think it worked! Will I try it again?

People with taste actually drink this?

Possibly. If the caffeine can combat the drug and treatment induced fatigue and drowsiness ... it may actually be of some use. I could try more sugar and perhaps milk next time.

But I don't know what will happen should I get used to it and my taste start to return. Will I be addicted to the shit and have to get used to the real taste instead of sorta-bitter-muddy-ditch-water?

Or is that how it tastes all the time anyway? It wouldn't surprise me.

The Man with No Taste

Bonjour my fellow ex-food-a-philes,

this morning's topic has to do with the somewhat cumbersome problem of: what is taste?

It seems that there are 2 major definitions.

The first is having to do with the classic physical sense of taste and food, tongues and taste-buds, and smell.

The second is the far more subjective social question of what constitutes good or bad "taste" in everyday life - clothing, haircuts, music, and so on.

I think I can easily deal with the second definition nice and quickly like this:

One of these is in GOOD taste, and the other is NOT. Can you decide? Your entire future as a credible member of society is at stake!

Now, having done that, we can turn to the much more basic problem of definition 1 and the ability to taste our environment, most especially the food that we are in the process of eating.  Here is the basic diagram that we all grew up with from out primary school textbooks.

This is an oversimplification. We have taste-buds in our mouth, and they reach all the way down into the Stomach. Using the tongue to taste foods is just part of the process. It is of course, the major part of the process (and yes, smell is important too.)

Now imagine, if you will, your ability to taste food and drinks was ripped away from you over a period of 2-3 weeks, and then pretty much gone completely. Your sense of smell decreased to about 50% normal.

Not only that, this state of affairs is likely to continue for some months to come. And .... not only that! There's this new treatment happening which is likely to make sure your taste is fucked for even longer.

Fun on so many levels.

Yes, my dearest ones - you guessed it! These are all the side effects of months worth of wild gay sex orgies! I've sucked so much cock that my taste buds have been worn away (No no no no! Stephen! These are just stupid things you fantasise about to hide from mundane reality. 

No no no no! Stephen - wrong again! They could have happened in the depths of Tom's Bar in Berlin on a Saturday night in June 1998. Hmmm, that could actually be right! There was that American guy, the Dutch piano player boy from Amsterdam, the leather fisting couple from Darmstadt with the matching cock-rings, and about 15 grams of hash involved.)

As you may have guessed by now, these are the fantasies of a sex-starved cancer patient. I'm not staying that certain things didn't happen though ... ;-)

Arsehole!

 No, it all comes down to the lingering side effects of the Radiotherapy from 2 months back, and the new set of side effects hitting from the Chemotherapy.

The Chemo side-effects have already started (thanks for the Thrush, leaky bowels, renewed fatigue, and Mouth Ulcers: Arsehole Chemo!)

When I received the Bad News the other week (Wed 14 MAY), we were talking about the potential side-effects of trying the chemo.
Doctor Dan said, "there may be a change in the way that you taste things."

There I was, just told I probably had a year to live, and I burst out laughing (which was not expected.) "My sense of taste is already gone thanks to the radiotherapy. I don't think the chemo can make it much worse."

I casually shrugged off the problem as the doctors looked on like freaked out puppies.

That wasn't the first time I managed to catch them off guard like that! Later on in the meeting they asked about who was managing my pain control. I told them that my GP and a radiotherapy registrar were sort of handling it - ad-hoc. They suggested that I should see a pain management specialist. I agreed readily to that.

"Now I don't want you to find this too upsetting. We're not trying to imply anything at this stage," murmured a rabbit-in-the-headlights eyed Dr. Daniel. "... but have you ever heard of ... Palliative ... Care?"

Again, I burst out laughing! "Do you mean Dr. Barclay and his mob out at Port Kembla?" Dr. Dan looked taken-a-back.

"I was referred to them back when I left hospital in February as someone who would need long term recovery support," I explained jovially. "Nice lot of people. I've already met Dr. Barclay."

Dr. Dan's astonishment turned to instant relief on his face. He wouldn't have to go through the whole Palliative Care spiel that he had been dreading to deliver. With the look on his face, I laughed again. You can get a good laugh even in the darkest moments.

Anyway, it was agreed that Dr. Barclay would be the best to handle my pain problems, and that was that.

But for now - no-one can repair my missing sense of taste. It's AWOL, MIA, walked out, havin' a long smoko, shot through, completely and utterly fucked off.

They say it'll come back eventually - but that can take months. And it never just switches back on. You might get your sense of taste for chocolate back again, but only for 2 days and then, gone again. Prick teaser!

The only thing chocolate that I like at the moment is Lindt 85% Cocoa Dark Chocolate. I can't taste the chocie flavour as such, but I can taste that it's sweet with a wicked bitter afterbite.

As for milk chocolate: I bought some really nice ones for Easter, and was going to hold off until Sunday and celebrate zombie Jesus day with a nice scoff. But like an excited 6 year old, I wanted to try some now. And being the irresponsible 49 year old in charge of the eggs, it was easily resolved.

And shot the friggin' Easter Bunny

I broke up a single egg as a taster, and started to nibble it. NOTHING! It tasted like ... damp chunky cardboard. I could vaguely sense that it was sweet - but nothing more.

I gave away my Easter Eggs :-(

But the Lindt chocolate is a different matter because of the strong Cocoa content. It doesn't taste like chocolate, but at least something interesting, and it breaks down into a nice easy creamy mass.

Same with Jelly Beans. Was at the Chemist getting a script filled and saw some of those little packs of "medicinal" Jelly Beans. (Medicinal my arse - simply packed full of glucose rather than sucrose.)

I bought a pack and came home and tried one. Again no taste and it was like eating (what I imagine to be) congealed rubbery snot. Spat it out. A cheap Coles mini-cup cake followed suit a few days later.

All things containing high levels of fat and salt have little or no taste - and anything that does get through is just disgusting. Can you imagine me not snacking into a hamburger and chips? Neither can I but these are just awful to me now. 

By now you should assume that pretty much everything has no taste, or very little. Some sweet gets through vaguely. I can sort of tell the difference between the 4 basic tastes - I know if something is sweet or sour, but beyond that ... nothing. Like tumbleweeds down a dusty deserted street.

Would you like more of Mr. Lecter's Bacon, Timmy?

Even BACON! Goddamn fucking Bacon!! The food of the gods.

So nice that even Vegans have their own soya-and-chemical substitute (which isn't bad); and Muslims (at least in Malaysia) have Beef-Bacon which is very thinly sliced beef (instead of pig-meat) cured in the same way, and not a bad substitute at breakfast time.

(I don't know if the locals in Malaysia actually eat it themselves, or it's just a sop for us foreign devil Western business men.)

Tried some on Sunday when my cousin Joc visited. Ordered a bacon and egg roll. The bacon was nothing more than nicely cooked strips of slimy rubber!

Not all is bad news though. Since I can't have taste, I have been concentrating on texture. What has an interesting pleasing texture?

Things like Ice Cream and Yoghurt are a good start - nice and creamy and soothing (esp. on the mouth ulcers and thrush.) but even the ice cream needs to wait a few minutes to let it start to melt before the texture is right.

Again on the creamy scale, Cream of Chicken Soup is good, and thickened Tomato Soup (with cracked pepper for a bit of zest - yes I can taste pepper-power.)

So what does all of this add up to? A fuck-tonne of dire frustration, that's what!

Yes, I've been all funny about it - but this is getting serious. It is truly driving me crazy. It is also getting serious from the perspective of my weight. I'm not gaining any, and can barely stay stable. Just a few weeks back I lost 3 Kg over 2 weeks.

Hello would you like all my food?

This is not a good situation for me to be in. I am half my former self, and dropping. Add to this the mouth ulcers and thrush from the chemo, and you have a very nice recipe for Disappearing Stephen. It doesn't fucking matter if I get nausea from the chemo. Most food is a turn-off anyway.

I wasn't sure if I was going to show this photo of me (right). It's actually for a future post about having the chemotherapy - but in relation to what I've said, this the Amazing Shrinking Stephen. My, what masculine arms I have, and that cute pot belly.

You may think I've just taken some emaciated person and stuck my head on in Photoshop - but not so. This is me.

Soon to come with no flavour at all

One saviour that I have is the Ensure Plus™, a special medically formulated milk drink which is super rich in protein and all sorts of other good things. Normally this is given to grannies in nursing homes who are one step away from a friggin' feeding tube up their nose.

People in the know say "isn't that stuff pretty awful and sweet Stephen?" And I reply "I can't even tell the difference between the chocolate and the banana any more. How the fuck would I know otherwise?"

Banana, Chocolate, Orange, Congealed Snot. It's starting to sound like I could enjoy all of Bertie Bott's Every Flavour Beans. Yum, thanks Bertie.

Oh and radiotherapy...?

You're still an arsehole.