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.

Happy Days Part 2

You know when you meet an amazing person, and you click, and you just know that you're going to be the best of friends for life? Yeah, well, that didn't happen with Leigh and I. Perhaps that sort of instant thing is just bullshit.

Flatmate Hell, Chippendale

The deep love and friendship between Leigh and I was born in the fiery crucible of the share-home experience. For 6 months we lived in a dire household in Chippendale (Sydney), with a mad drug-addled screaming queen, his depressed punching-bag boyfriend,  a sour vicious goth girl, and 2 naughty kittens.

Leigh and I bonded sitting in one or the others' bedrooms, smoking dope, drinking red goon, watching Star Trek videos and telling each other how much we hated living there.

At the end of the 6 months lease, the household sprang apart and Leigh and I moved into a house in South Newtown together. That was a haven of relative peace (never mind the jumbos flying overhead) and fun.

We became like the older brother and younger sister that neither of us had. We shared secrets at midnight that til this day no-one else knows. She taught me how to hug and cook.

After 18 months, for better or worse we went our separate ways. She eventually moved to Katoomba for years - which was sort of great. I would go up and visit and usually stay the night on the floor, teasing her cat Lucie. Her various homes in the Blue Mountains were like a retreat from the busy life of the city. I continued my busy and somewhat slutty life in Newtown.

When my mother died in 2001, Leigh was the only one of my Sydney friends who came to her funeral. That meant a shitload to me. Later that year I was sick of living alone in Newtown, and Leigh had become bored with the mountains and was ready to re-enter the fast lane again."Are we moving in together again?" I asked her on the phone. "Yep, looks that way." she replied. And so it was.

Come on in, the cocktails are ready & the bong's clean.

We rented a large old 2-storey Terrace House around in Enmore for 18 months. It was a manky old place but a and good space for two people who had lived alone for a long time. When the landlord wanted the property back, the Universe found us a new place, a single storey terrace, almost directly across the road. We hired some stair trolleys and tempted friends with free booze, and moved.

We were housemates again in Enmore for 6 years. We had great parties, and always had spare room or a bed for visiting friends, or plenty of floor-space for the leftover bodies from parties.  We were close to great pubs, and thousands of eateries; next door to a Wiggle, and the ever thumping Enmore Theatre.

"Breakfast at Steve's the morning after,

Leftover people eating leftover pasta."

From a little poem I wrote years back.

I encouraged her career as an I.T. Business Analyst, which hasn't always been easy for her, but the money has allowed her to write a number of Vegan Cookbooks.

Again, with her life changing, she moved out (along with her 2 cats Lucie & Squeak) to get her own space, and lived in Newtown.  I stayed in Enmore.

After the death of my father I moved back to Wollongong to live in the old family home for a while, and when that was sold, I moved in here and did my falling into the bottom of a whiskey bottle routine. As you may have read from an earlier post, this was almost fatal. I lost contact with Leigh (amongst many other wonderful people.)

The Lucie-woo. RIP love.

Soooo ... after all that exposition, you might imagine what it was like to see her again on Sunday. She looked well and happy. Her job was OK and she has another Vegan cookbook on the way. She is somewhat saddened this year with the death of her mother, and her oldest 20 year old cat Lucie. I'm so ashamed that I wasn't there for her.

As soon as she stepped off the train we had a long deep hug - something I don't get much of. We went back to my place & sat about for hours catching up. It was like we'd only seen each other the day before. But at the same time we were both aware that so much time had passed and there was much to discuss.

Friendship runs deep. Especially if you're both silly.

After seeing her off on the train back to Sydney a few hours later, I came home and cried for a while. That's the first time in a looong time. But I felt so much better for the cry, and for her visit in general.

Somewhere deep in my heart I've developed a better understanding of what I would miss should/when I die. (Bloody hell- that last sentence was hard and strange to write.)


[Weird aside about this post. I went to add the labels for it and found that all of them were horrendously depressing, all about hospitals and cancer. It was nice to add some happy labels.]