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.

Tongue in the Sun

Greetings fellow sun worshippers ...

Just had a lovely day today (Sun 25 MAY)  with my cousin Jocelyn.  She came down from Sydney and arrived about 1/4 to 12, just as Lee my Community Nurse was changing my dressings.

Brave woman that my cousin is, she stayed and watched Lee clean everything up and re-dress my ear.

10 years of Work

After wandering about the house and showing it off to Joc, I gave her the fruits of my family history labour of love. A large dusty tome of the ancient family secrets? No. A pleasant little bound book stuffed with fold-out family trees? No. It was a small piece of plastic! It was an 8 Gb USB Flash Drive, containing my book The Leavetaking (which is not about her family anyway - but my mother's.)

She was so happy to get it as she has more than dabbled in the curious arts and crafts of genealogy herself - looking into her father Bob's Edwards family, and our grandmother Ena's O'Connor family. It also contains a copy of my entire Nicholson family digitised photo collection, some scans of cookbooks left behind by my mother, and my entire family history database.

It was a strange feeling that a work that if printed would fill an entire room or more, was now condensed to a few grams of plastic and silicon. In the end the contents almost completely filled the entire 8 Gb!!

After that momentous event (I fucking forgot to book the Mariarchi band - damn! Q - click your fingers quick) we headed of to the beach.

It was such a lovely warm day here (apparently reaching 27 deg C) with a nice cool sea-breeze, that we decided to have lunch down at Bulli Beach, where there is a lovely café on the headland overlooking the beach, swimming pools, rock platforms, happy families on the beach with a few braving the water, and ocean. Behind us swept an entire view of the Illawarra Escarpment.

On Bulli Beach - Panorama

That's what Wollongong is like, a slim coastal strip sandwiched between the mountains and the sea. I still remember being taught that the local Council motto means that exactly by my history teacher Father Dean back in 1979. "Urbs Inter Mare Montemque".


Although we bought it with us, I decided that my legs felt strong enough not to bother with the Walker, and the distance between the car park and café was not far. I took it slow with no problems. I ordered a Banana Smoothie (always a favourite of mine) and Bacon and Egg roll - in the hope that I may be able to taste some of it.

The egg in the roll was nice, but I couldn't taste the bacon-y power of the bacon and found the BBQ sauce somewhat overwhelming. I noticed yesterday that my tongue and gums had become sensitive, and suspect that this is a minor side-effect of the Chemo. My lack of ability to taste food is really starting to piss me off!

Joc and I sat and chatted for what seemed like ages about everything and nothing - as you do on a fine Sunday afternoon. It reminded me of the long lunches that we had many times when I lived in Sydney. Sometimes we would meet in North Sydney where I worked, sometimes in the City, and occasionally at my own stomping grounds in Newtown. When we discussed that, it almost brought me to tears. Joc suggested that Leigh, her and I should meet someday soon in Newtown for a long lunch there.

We wandered out of the café's seated area and out onto the grass in the sun. It was photo time and she took this lovely one of me with the beach as my backdrop.

My Nigerian Uncle wants to sell you this.

I snapped this quick cheeky one of her, with her commenting that it wasn't fair. Tough shit. It's been quite a while since I had an elusive up-to-date photo of my cousin.

A little wind-swept my dear?

We saw a man seated near us with a good looking camera, and assuming he knew how to use it, asked him to take my camera and get the even-more elusive shot of us cuz' together.

Lord Kodak couldn't have taken a better picture of happy Cuz'

Now, Bulli beach was much more than just a beach close to where I grew up in Woonona.
Woonona has a nice beach as well, and it has a history: Captain Cook had tried to land there 28 APR 1770 - the first place he attempted to land in Australia. Despite the need for fresh water, Cook's boats could not put in due to heavy surf.

"Saturday, 28th. In the P.M. hoisted out the Pinnace and Yawl in order to attempt a landing, but the Pinnace took in the Water so fast that she was obliged to be hoisted in again to stop her leakes. At this time we saw several people a shore, 4 of whom where carrying a small Boat or Canoe, which we imagin'd they were going to put in to the Water in order to Come off to us; but in this we were mistaken. Being now not above 2 Miles from the Shore Mr. Banks, Dr. Solander, Tupia, and myself put off in the Yawl, and pull'd in for the land to a place where we saw 4 or 5 of the Natives, who took to the Woods as we approached the Shore; which disappointed us in the expectation we had of getting a near View of them, if not to speak to them. But our disappointment was heightened when we found that we no where could effect a landing by reason of the great Surf which beat everywhere upon the shore. We saw haul'd up upon the beach 3 or 4 small Canoes, which to us appeared not much unlike the Small ones of New Zeland. In the wood were several Trees of the Palm kind, and no under wood; and this was all we were able to observe from the boat, after which we return'd to the Ship about 5 in the evening." 

Journals of the Endeavour Voyage of James Cook R.N. 1769-1771.

They gave up headed north, and the next day Cook spotted a Bay he eventually named "Botany".

Whilst Woonona had a Surf Life Saving club, at the time it had no junior section, but Bulli did!

Ever since I was born, I had problems with my right leg. A doctor at one stage suggested to my parents that I would end up in a wheel chair  - time's up, fuck off, pay the bill, and yer kid's a cripple. Life sucks!

My parents wouldn't accept an answer like that and after moving to Wollongong sought the wisdom of a local doctor who suggested that running on the sand, and swimming, could probably strengthen my gammy leg and get me walking properly without going arse-over-tit every third step.

So they put me, and my brother Chris, in Bulli Surf club:

Yellow? Painted YELLOW? Where is the classic Red brick, tinea & vomit motif?

Yes, we became members of the esteemed Bulli Aqualads - a name which could bring naught but respect and absolutely no derision at all! (You there! Yes I see you snickering behind your fingers!) We got our club speedos (aka Dick Pointers or D.P.s) and surf caps.

I have to look like this to walk properly? Gimme a wheelchair!

My brother was the natural athlete of the 2 of us - and he took to the sand and water easily. Me? I just came last an awful lot. Nonetheless, upon reflection, Surf Club was an important part of those formative years. It's values of hard volunteer work, selflessness, and ya know - trying to save people's lives - certainly had their impression on me.

The men and women with whom I associated were mostly working class salt-of-the-earth people, but in between their latest schooner of beer and fag, they had much to teach. They could party in the club house knocking back 20 tinnies of K.B. and a carton of smokes til 3 AM, and be ready on the beach by 8.

Overall though, I didn't like it much and eventually dropped out before getting my Bronze Medallion - something which disappointed my mother bitterly - around the age of 14. However, there were upsides that I found from the age of puberty onwards. I was a proto-gay-lad, not just an Aqualad - and running about with all those near naked boys helped me take on a somewhat more ... positive ... attitude.

I'll tell you a true story that no-one else has ever known.

Towards the end of the season of my final year in the Junior club (under-13s), we had our annual competition with our sister-club Cronulla Crays from south Sydney. They came down to Bulli this time.

OK, this is my 12 y.o. one -
but close enough.

That year I'd been particularly slack in the surf club, and my father and his best friend Greg Gleaves who jointly ran Aqualads had agreed that I would probably not receive my Efficiency Medal at the end of the season. (I think I was going through my first serious depression.) I was equally unenthusiastic about this competition with Cronulla.

Yes, I had medals and trophies!

Oddly I blitzed that day like I never had before - running and jumping like crazy in the sand, and entering and doing well in every swimming race. I was a regular little Iron Man for the day. This surprised Dad and Greg. They were so proud that they re-instated the Medal for me. They let me know how close I had come to losing the medal (like I gave a shit!), but could never figure out where this bout of prowess had come from.

Simple - I was 13 and horny! One of the Cronulla boys in my age group had caught my attention - he was beautiful! And he was nice too, we talked often during the competition and struck up a good friendship for the day. I couldn't be slack for this gorgeous young stud, and so I threw everything I could into impressing him.

I'm pretty sure to this day he was giving out all the right signals of his own. What could have happened had we found ourselves alone and locked in one of the changing rooms and showers in the clubhouse remained a favourite masturbatory fantasy for many years to cum.

Alas, there was no chance to do anything about it. After the competition was over, and the obligatory sausage sizzle and piss up for the oldies was done, the Cronulla Team jumped on their bus, and I never saw him again, don't even remember his name.

So there ya go! Mystery solved. The power of lust.

Oh yeah - and my gammy leg? Yes, Surf Club probably helped, amongst other things, to make sure I could at least walk properly without any hint of a problem. And I fell over a lot less.

So in honour of all of that, here is me today in front of the Surf Club.

Thank you Bulli Surf Club for all those boys in Speedos. Aw yeah - and the stronger leg.

By this stage, my strength was starting to fade, but I was desperately trying to hide it from my cousin. I was enjoying this "normal" day out. Not a nurse or CAT scanner in sight. We agreed to head home, and I rang my brother to join me there.

Chris, Joc and I sat about for a while chatting, but I couldn't stop myself from nearly falling asleep in the chair. With much sorrow I agreed to their haranguing about going to bed. I am sorta sick after all.

They left and I did indeed toddle off to bed for a deep 4 hour sleep.

Which is something I'm going to repeat right now.

What did that Cronulla boy look like? Mmmm...