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

Greetings fellow travellers.

Put on a Happy Face

Despite the bad news that I've received this week, the last few days have been wonderful and full of nice surprises.

I find myself a happy man tonight.

Here are a few things that happened on Friday (16 MAY).

My extra four legs

My walker and shower chair were due back at Port Kembla hospital, their 3-month lease being up. I was hoping that I could pay another $50 and get them for another 3 months.

The young man on the phone was explaining that they only loaned the equipment for a 3 month period and renewing that was not an option. The stuff had to go back. Sighing as Port Kembla hospital is way south of here, on a hill, parking is shit, and my legs are still weak - thus the need for a walker in the first place!

I was about to hang up when the young man, who must have been reading my file, asked if I had been referred to the Palliative Care team. I said "yes." That had already happened when I got out of hospital 3 months ago.

"Oh that's alright," he said. Being connected to Palliative Care meant that I could keep the walker and shower chair on indefinite loan at no cost. "Until I no longer needed them." [insert ominous music]

Anyway ... fucking BONUS!

Not this guy! Too techie.

Then my lawn mower man popped in (lawns did not need doing) with a Mac laptop under his arm. Apparently he had been trying to send me some e-mails and they had bounced. I took a quick look and determined that he had mistyped my address. Simply fixed. He's not too tech saavy - but is trying. Fittest 70 year old I ever met though.

He said he wanted to get MS Word but didn't know how to go about it for the Mac. I took pity as I had the installer discs of a slightly older but perfectly serviceable version. I told him I'd fix that for him too. He took off for another job and I got out the discs. When he returned it was all installed and up and running. He was very happy.

We chatted about his need for an external backup drive. I told him what he needed, but he did seem somewhat confused. Anyway I said that I have to go and pick up some things from Officeworks (big office supply store). He asked if they had backup drives and I said, yes they were sure to. So he offered to drive me into Officeworks so I could get my stuff and help him choose what he needed.

When all that was done we headed to the checkout. I started to sort out what in my walker basket belonged to me, and find my wallet, when he stopped me. "I'll pay for it all," he said. "You've helped me so much it's the least I can do." So pay for it all he did, with a hearty thanks from me.

Strange nice little surprises sometimes come your way. The Universe isn't totally heartless and cold and fucked up.

Saturday (17 MAY) was even better. I had a visit from long-term (nearly 30 years) friends Keith and Sharyn. I had some copies of the first 6 episodes of the new Game of Thrones (don't ask me how I got them - that damned stork delivers more than babies ya know ;-)

Sharyn in particular was keen to watch a few episodes to start catching up with what was going on. Keith wasn't too fussed - I think he was sort of dragged along. We got all comfy in the lounge room with my big tele & surround sound. Dark chocolate and microwave-heated cashews appeared and we settled down. I'd seen them before, but I do like seeing things like that a 2nd time. You tend to pick up so much more.

I  expected we might get through 3 or 4 episodes, but in the end it was Keith who was the driving force - demanding every time that an episode finished that we go onto the next one. He really got into it.

 Go team Targaryen!

After the 4th, Sharyn had noticed that from time to time I'd been fading out and having little grandpa-naps. What with the radiation induced fatigue, my crap general health, and the cancer pain pills, it's easy enough for me to do - especially curled up in front of the TV. It was late afternoon and they were murmuring about leaving. I'll be honest, I didn't want them to go. The naps had refreshed me, and if we watched the last 2 episodes that I had, our marathon would only finish around 7:30.

They happily agreed to stay and onto the last 2 episodes we went. I was particularly keen to see the ending of episode 6 again. Peter Dinklage at his finest.

After that it was hugs all round and they headed back to Sydney,

I was in a fantastic mood! For the first time in ages I had done something NORMAL! Friends, snacks and a TV marathon. There was nothing medical involved at all.

It's sad that my life has become defined to some extent by all the medical stuff that I need to go through. People seem to think that someone who is chronically ill, as I am, swans about the house all day watching TV and wanking.

I've had nurses ask me "So, Stephen, how do you fill in your day?" Are ... you ... fucking ... KIDDING ME?

I have to keep this crazy cavalcade of events in iCal, and print off a monthly copy and put it on the fridge, just to know what I'm doing, what's going to get done to me, and when. There is a never an empty day. At the very least I have to get my dressings changed that keep the nasty cancerous areas on my head clean. Every day, without fail, by a Community Nurse. Then there is the round of meetings with my GP, Specialists, check-ups at the Hospital, scans, blood tests and so on.

So you can imagine that Saturday made me feel so alive.

So much so that I brought the long running saga of my family history book to an excellent conclusion.

I'll write about that, and a visit on Sunday from my closest friend Leigh, in some forthcoming posts. For now, the pain killers seem to be working well enough that I might attempt bed - again!

G'night.

Look Boss! De pain, de pain!

OK, the title is bad pun on a corny tag line from an even cornier old TV show. But it's 5 in the bloody morning so what do you expect? A sense of humour bigger than Ricardo Montalbán's pecs?

Yes, I've been woken by the cancer pain. For a long time it's been quite nicely under control, but just in the last 4 days or so, not long after my returning cancer was confirmed, the pain has been consistently starting to spiral up again.

Partly this may be increased tension within me after last Monday's poor diagnosis, which often adds physical tension to my body. I'm a great jaw-clencher and breath-holder even though I'm often unaware of the fact.

However, I think it's mostly that the cancer re-growth may be pressing on some sensitive areas within my ear canal and surrounds. Anyone with dodgy ears will know how stupidly painful ear pressure can be. I've never suffered it before, although my brother has, poor bastard!

As I already mentioned in a previous post I have access to some opioid pain killers, and the dosage level has been very successful at keeping me mostly comfortable thus far. If this goes on, however, I may get my arse to a doctor and see what I should do. I think I'll ring my GP's office Monday morning and see if she can squeeze me in for a quick appointment. If worse comes to worse I'll definitely be seeing this new Medical Oncologist on Wednesday.

As far as I understand it the level of pain killers that I'm taking is in fact very modest compared to what some people need, so it may not be too much of a problem in upping the dosage, especially now that it's disturbing my sleep. Parts of my last few posts were written mostly in these wee hours for the same reason. Getting up, moving about and doing something to distract me for a while seems to help. I can normally slip back into bed again after that.

One of the more interesting back-ups that I have is that I'm already connected to the local Palliative Care team at Port Kembla hospital. This was done when I was leaving Wollongong hospital back in February.

When they first told me that this referral had been made I sorta freaked out a bit. Palliative care - isn't that for, *gulp*, dying people? Is there something that they haven't told me?

It turns out that anyone who has been seriously ill, and in for a long haul illness and recovery like myself, can also be looked after by palliative care, not just the specifically dying. They make sure that all the services are put in place to keep you comfortable during the long recovery. That includes dieticians, physiotherapists, occupational therapists, counsellors and social workers, as well as doctors and nurses: some of whom have been popping in here at home from time to time to make sure that all is well.

They've done something that I've never heard of before. The team's head doctor has written some prescriptions which have been lodged with my local pharmacy (drug store). They are for emergency injections of powerful pain killers, sedatives, anti-nausea and anti-vomiting drugs. The Community Nurses who look after my dressings every day can call the pharmacy, have those emergency 'scripts filled, and come around here and jab me with whatever's needed to help.

Of course, that doesn't help me at 5 AM on a Sunday morning when everything is shut. There is however a magical mobile number I can call at any time to ask an on-call Community Nurse to come around. I don't think it will go that far this morning. I've popped a full Endone and will wait and see what it does. Soon I should be comfy enough to slide back into my toasty warm bed.

Ever since I came out of hospital nearly 3 months ago I've actually been sleeping quite well. I don't want those restful sleep cycles disturbed. Normally in the past I've been a pretty crap sleeper with bouts of insomnia. Or for the last 4 years I've not been sleeping as such, more passing out from the booze. I'd forgotten what good sleep is all about.

Anyway ... the pain seems to have calmed down a bit, so I might try and get back to bed. I can hear Kookaburras in the distance already singing their morning-song. Luckily I don't have anything happening until about midday when my Community Nurse will pop in and change the dressings on my head, and if need-be, I can nap again later in the day.

As the old song goes: "Laugh Kookaburra, laugh! How gay your life must be ..."