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.

Take your PICC

Greetings early morning risers and other perverts,

This week has been buzzing along at an amazing pace. I can't believe it's already Friday, albeit at stupid o'clock in the morning. Yes, the pain is getting to me again. Which is really fucking me off because almost all of yesterday (Thu 22 MAY), I was CLEAR of pain. I don't know what magic combination of Oxy, Endone and Lyrica did the trick.

A pretty good day

Actually that's not true: I've started to seriously keep track of the pain killers, the pain, and my sleep patterns. I designed this nifty form which I keep filled in.

Bring on the chainsaw

It should help the pain specialists to figure out what to do next. But the answer doesn't seem to lie in the data. I went back to bed Thursday morning about 5 am, when I woke at 6:45 am in order to get to the hospital on time to be connected to my chemo, the pain levels were almost 0.

(I order the pain levels from 0 - nothing at all, to 10 - the
screaming mimis where I wish someone would just take a chainsaw and chop off the afflicted parts of my body. I used to suffer from severe migraines, and so know about being at pain level 10. The numbers are all subjective anyway.)

Throughout the rest of Thursday the pain levels stayed amazingly low which was quite a relief! It's only been from about midnight tonight on that the pain started to go fucking doolalley again.

I mentioned in my second last post that I was about to get my PICC line in, and also attend an education session, telling me all about the fun facts of Chemo. So on Tuesday arvo (20 MAY) I rocked up to Wollongong Hospital, ready for the fun and games. And they began.

The stylish bed

I was weighed, and given a hospital gown to swap for my jacket. I was allowed to keep my trousers on. I lay down on the hospital bed and soon enough they were at it with the Ultrasound - determining which arm had the best vein to reach close to my heart. As it turned out either was acceptable, and I chose my left arm, leaving my right arm free for wanking writing.

Then they asked me to lay flat with my left arm extended so they could begin the grizzly task of running the catheter tube, through a vein that you can barely see on the ultrasound, all the way to my heart. Of course, to get to the vein requires a hole.

I think I prefer a model plane ki

It was a bit bizarre because as I lay there, the last few days worth of shit sleep started to catch up and I found myself hanging precariously between consciousness and the realms of Morpheus. Then they started.

On the left is the actual catheter kit. There is basically a tube within a tube. The outer tube - standard translucent plastic - is just the external packaging & feeder tube. The thinner tube you can see coming out one end (esp. on right of picture) is the catheter itself - what will worm its way inside of me.

They took the measuring tape (left of photo) and tried to crudely measure the distance they would have to feed the catheter for it to reach its destination - up my left arm from just above the elbow, to my shoulder, and then across my chest to close to my heart.

So-many millimetres one of them said - as if they were like Mr. Humphries measuring my inside leg.

They covered part of me over in one of those green surgical cloths that has a square window in which the work will be done.

"Just a little prick Stephen," one of them said. Were they making fun of me? I mean, I know that I've lost some weight - but I didn't need this! I was just about to jump from the bed and call for Captain Peacock, or someone in management, when I felt the little sting of the first of 3 local anaesthetics. [Did you see what I didn't do there ... I didn't make a dick joke ;-]

Two more, and a few moments later, they were ready. It was nice of the nurses to wait for the locals to actually work!

So subtle!

I didn't see how they precisely got down and into the vein so accurately. I asked later and it was done with a very large needle and a small scalpel. The next thing they were playing with the area and feeding the catheter from its feeder tube and into my body.

I was both a little disappointed and relieved that I didn't actually feel anything. There was no sensation at all of this long thin foreign object penetrating my body [almost a dick joke]. They just kept mumbling out millimetre numbers. Whilst one fed the catheter, the other was keeping an eye on the process as best they could with the ultrasound.

A few minutes - and it was done. They were putting various dressings over the wound. I had a look. There was a little blood under the clear dressings, to be expected, but that was it! It was all wrapped in a classic long white crepe bandage, winding round and around my arm - a pressure bandage to stop any further bleeding and help the hole in my body [okok - who started with the arse jokes? hands up!] to heal.

Have selfies come to this?

The only visible sign of all of their hard work, aside from the bandage, was the thin plastic tube dangling from the dressing and floating free in space - with some sort of cannula plug on the end.

The Aliens have been eating Baked Beans again.

Once I got up and dressed, they sent me off to get an X-Ray which would look and see if the catheter has been accurately placed.

Nothing special about that - except on the way to Medical Imaging there was an odd sign that I saw on a door to the outside construction zone (Wollongong hospital is having a massive new wing added, as if the fucking place isn't already a totally illogical maze to get around.) Very odd.

I returned to the Cancer Care level, and waited for the results. Nope! Mr. Humphries had got the length of my inside leg all wrong. They had pushed the catheter through too far, and it had veered up another vein and ended up near my right collar bone.

Standard dressings for a PICC Line.

They asked me to lay down again on the bed, and took off the dressings with a view to literally pulling the catheter back out bit by bit until they had what they thought was the right length. I took few snaps during the process.

Straight to My Heart

To the left is what it will look like for as long as the PICC line is needed. It will need to be re-dressed on a weekly basis as under this it goes straight into my body - a lovely vector for an infection - straight to my heart.

Hmm, "An Infection Straight to my Heart" sounds like the next big hit for some poor Country and Western singer. She could compare luuurve to MRSA or some other super-bug infection. Classy yes?

You're like an MRSA to my Heart, Bobby-Jay

And I just want to say,

We could live in sin,

Youuu, meee, and the Van-comy-cin.

 Have we had enough of this? I sure have. Rightooo ...

Once the PICC line was re-dressed, it was off for a 2nd X-Ray. They said they would forward the results up to level 2 of the Cancer Care unit, where good old Radiotherapy lives, as well as lots of offices.

Because of the delay caused by the 2nd X-Ray, it was now getting late in the afternoon, and the Education Session that I was supposed to attend was in theory going to last 1-2 hours. I couldn't see how they would fit that in - and I was right.

When I found Monica, the nurse who was supposed to gittin' me some o' that learnin' real good now (how did this post go from "Are you Being Served" to a redneck America theme? I cant think of weirder opposites,) she confirmed that it was too late. I would have to come back to the hospital tomorrow (Wed.) ! Groan...

Luckily I had to be in the hospital again early for an appointment with my Gastroenterologist (liver specialist) Dr Rogge, so Monica organised it so that the new Education session was just after. It all worked out so well.

Anyway, the 2nd X-Ray came back good. They had the catheter precisely where they wanted it, so I finally managed to head off home.

I'll skip a long post about Wednesday.

The news from my Liver specialist was excellent. She said that it had been many years since she saw a liver bounce back so well - going from nearly useless in January, to pretty functional. She told me that I must have quite an impressive strength of will.

When I told her about the nasty prognosis and my determination to squeeze as much time as possible out of life, she was equally impressed. Hey does that make me officially an impressive person? "Pull yer bloody head in Stephen!" I hear you say. Yeah yeah, OK.

Is he Impressive?

Nah - now he is fucking awesomely Impressive!!

The Education session went for about 1.5 hours in the end - but was interesting.

It went through how the Chemotherapy actually targets the cancer. This type of cancer (Squamous Cell Carcinoma - SCC) is comprised of cells similar to our fast growing  & replacing epitheleal cells, such as in our mouths, stomach & intestines. The drugs actually target these sorts of cells, which is why, as well as hitting the cancer, they alas can cause the standard side-effects of mouth ulcers, nausea & vomiting, and diarrhoea.

I was told to expect more fatigue - great! I was just starting to get a little more energy after the radiotherapy. Bye bye that.

Was it this?

Could have been this!

The drugs can also cause a change in your sense of taste. I laughed at that one! I lost my sense of taste back in 1975 after an episode of Countdown - and it never truly recovered. Or was it an E.L.O. album cover?


Er, no. The Radiotherapy knocked it out, with no sign of it coming back yet. So I guess that Chemo taste side-effect won't really matter.

One of the more interesting things that I found out is that during the first 7 to 10 days of the chemo, my bodily fluids are actually toxic. In what way precisely was never mentioned. So after a piss, I need to put the toilet lid down and do a full flush. I might have to postpone my leading roll in the Kissathon at The Toolshed on Oxford St. on Friday night. Damn.

I have to carry sanitary wipes with me so that I don't pass on something nasty, and vica versa. My pee can burn through 10-inch steel bank vaults in seconds. Watch out for the latest weird crime spree: News at 6.


But this was an education session! I could tell because towards the end there was even an out-of-date PowerPoint presentation. Nurse Monica embarrassingly rushed through that as fast as possible.

Anyway ... it ended. Another box ticked before the real event on Thursday (22 MAY) morning.

Yawn fucking yawn! It was yet another bloody 8 am start at the hospital. Have these people no sense of civilisation??

A gentleman may sit down to pee,
But he rarely rises before morning tea!

And so it begins...

Morning funky friends,

Today is preparation day for Chemotherapy.

I have lots of fun things in store for me.

First will be the insertion of the PICC line. A "minor" surgical procedure where they thread a cannula up through a vein in my upper arm and across and down into my chest, ending in one of my major heart veins.

It's all done with smoke, mirrors, incantations to the Elephant god ... oh and some local anaesthetic, an ultrasound machine, and hopefully someone who knows what the fucking hell they are doing!!!

It all gets verified by an X-ray.

I may be getting my first dose of Chemo via a standard I.V. That should take about 90 minutes. I would confirm that but the information sheet that would tell me has gone AWOL. I know it was in my walker basket when I came home from hospital last Wed, but no sign of it now. *Sigh!* I will ask my nurse for a replacement.

And there's some sort of information session to sit through as well. It may go like:

You will learn!

"Now sit up straight boys and girls! Is that gum in your mouth Stephen Nicholson?" 

"No sister, a eucalyptus lollie."

"Well spit it now young man, or it'll be the ruler across the knuckles for you!"

 "Yes sister..."

"Godless pervert... Now children, all together now: Pall-ia-tive care ..."

All together about 4 hours. So it will be a long day. my brother Chris will take me in, but I'll probably get a taxi home. With a new funny tube sticking out of my arm.

Then, good goddess, I have to be up early tomorrow (Wed. 21 MAY) to get back to the hospital by 8:15 am to see my Gastroenterologist! Hopefully that shouldn't take long.

Never a dull moment when you're seriously ill - except for the dull moments while you're waiting for stuff.

Little Victories

Little Victories, Little Victories,

You can always count your blessings...

Lyrics from a song by Wild Pumpkins at Midnight

(Much of the following post is from an e-mail that I sent out today. So some people reading this blog will already be acquainted with the content. Some events from the weekend have been detailed in other posts.)

Greetings all,

hope that you're all well and happy.

For the moment I am. The last 3 days have been very positive all over, annoying pain aside.

Had a great weekend. Long-term friends Keith and Sharyn came over on Saturday (17 MAY) and we had a Game of Thrones marathon. We watched all 6 available episodes of this years season. Made me feel so ... normal! Just hanging out and doing stuff that had nothing to do with cancer.

There ya go great-grandad!

Saturday night I devoted to locking off some of my family history efforts. I saved the book ("The Leavetaking") I'd been writing as a PDF, and closed the Word file. That was it!

I'd bought a pile of USB memory sticks and loaded them the book, a special "gedcom" file containing the entire family tree, scans of some of Mum's old cookbooks that I had from a marathon scan after Dad's death, and copies of my family photos folders. They're ready for various cousins who are interested. Some I'll post, others will pick them up. Oh and one huge one for my brother. This is a major achievement for me - 10 years of research and 3 years of writing.

On Sunday (18 MAY)  another long-time friend Leigh came down from Sydney. She is like a little sister to me, and I hadn't seen her in 4 years. We had a great afternoon sitting about and catching up on things. After I dropped her off at the train, I came home and cried for a while. Not something that I've done for a loooooong time.

From unhappy to intense! Licence photos never lie.

Today (19 MAY) I got my drivers licence renewed. Although I expected it, there was no shit-fight over the fact that I have all these dressings on my head for the photo. Enough of my face was visible to be acceptable. And, perhaps symbolically, I bought the 5 year licence (not a cheaper 1 or 3 year). Will I get a chance to renew it again? Stayed tuned kids!

One of the more interesting aspects of my trip to the registry office was that I walked there without my Walker. I decided to give it a try as it wasn't far. I think that if the distances are still long that I would probably need it - but I handled this quite well without it.

I finally got news late this afternoon about starting Chemotherapy. I'm not happy about the chemo itself - but it's a positive sign that attempts to help me are coming along fast!!

I head into Hospital tomorrow (Tue 20 MAY) to have my PICC line installed. It's like a permanent cannula. A tube goes from my upper arm, up and into my shoulder, and across through my chest and directly into a major vein near my heart. They watch all the time with Ultrasound.

Then Thursday (22 MAY) (at 8 am - bastards!) I'm back to the hospital to be "Connected" with my 4-day portable pump of the drugs. Apparently the pump is shaped like a dildo :-) It stays with me 24/7 wherever I go.

Next Monday (25 MAY) I have to pop back in and have it Disconnected. We wait and see what happens, and about 3-4 weeks later, I'll start round 2.

And the best news of all. Last week I had a CAT scan to determine if the cancer had metastasised (spread to other parts of my body.)

It's CLEAR!

Cancer suddenly springing up in the rest of my body is the last friggin thing I need.

Anyway, Woooo-fucking-hoooooooo.! & a hearty Yaaaaaaaay!

(I know - it's just for now, but still good news.)

The fight goes on ...

And the results are in ...

(The following Post is based on an e-mail I just sent out to close friends.)

Not good news!

Hi there all,

not been the best day today. Went for my  appointment with the Medical Oncologist re starting Chemotherapy.

That is going to happen, probably ASAP - esp. if I start with using my private health cover. The public system is alas a bit overloaded and it would take quite a number of weeks before they could "find me chair" as the jargon goes.

With this type of chemo they'll hook me up to a portable pump at the hospital. It stays on for about 4 days, and then it's removed again. The process is repeated every 3-4 weeks. So no long sitting about in hospital twiddling my fingers.

The side-effects will probably be not much worse than the those I've already experienced with Radiotherapy - so no big surprises for me there.

The nastier news is that the cancer is more advanced than what I'd previously been told. It's gotten into the bone around my ear.

The only reason to have the chemotherapy now is to try to extend my life somewhat, and keep me comfortable.

They estimate that I have 6-12 months to live.

Because of the depth of the cancer, there is little that surgery would do except waste my time (3 painful months in hospital) in a most uncomfortable manner. The cancer would just return - and faster than before.

I'm getting a full body CAT scan tomorrow at the hospital to see if the cancer has metastasised (spread.) The less spread - the longer I get.

The few people that I've told are all saying "I don't know what to say!" Which is alright ... neither do I, although when I told him, my brother made gratuitous use of the word "Fuck" - which is probably more articulate than I've been on the subject. I'm still in shock. It's not really sunk in.

My close friend who accompanied me to the meeting jumped on the net here at home and got some information about who to contact at places like the Royal Prince Alfred Hospital Sydney Cancer Centre etc. for possible second opinions and trials - and I think for my own piece of mind that sort of thing will be worth a try. All I can do is ask around.

Anyway ... I don't think I've any more to say ... for now. I'll be keeping regular updates here.

-- Stephen

My Suspicions were Well Grounded

Warning! This post contains access to some graphic medical images. Within the post I've shrunk them down to small 20x20 thumbnails, but if you click them, they will take you to the full size version. You have been warned!

I'm a bit on the slow side this morning. The fatigue from the radiation therapy, strong pain killers, a dodgy kidney and liver, and a wasted body, combined with a very late night, make for a slow start to today.

I could have easily slept until midday, but I have Community Nurses coming this morning to change all of my dressings. With the tumour being external it is exposed to everything (including the general public) so every day all of the padding has to be taken off, my ear and surrounding tissue cleaned (ouchy ouchy), and finally I get all gussied back up and ready for the day. Takes about half to 3/4 of an hour. Luckily the nurses are wonderful, and they come and do all of this in my own home.

Me and my dressings. The head-net is most fetching!
Better than being wrapped in 10 layers of bandages.

However, this has not been a good week for me. "Oh here he goes," you say, "here comes the daily whinge!" Well too bloody bad. What's the good of a blog if not for having the occasional snark? However in this case I think I'm entitled.

A few weeks back I completed a 7 week course of radiation therapy on my right ear. That was pretty intense. I had to be in the hospital 5 days a week. It didn't take long - about 15-20 minutes all told for the treatment itself - but add to that the time to unpackage and repackage my head and the total was at least an hour. Assuming the nurses at the Cancer Care Unit at Wollongong Hospital weren't stupidly busy - which was often enough.

The first week consisted of some low level radiation to stop some of the pus and haemorrhaging, then after a small break, 30 treatments of high dose radiation: 5 days a week for 6 weeks.

This is the tumour as it looked before treatment. Taken by my brother 14 FEB 2014 in Wollongong Hospital. Click it for a larger viewable version.


The worst side effects were the accumulating fatigue (which will take some months to wear off) and terribly painful radiation burns to the skin surrounding my ear. They told me it would be like a bad sunburn. "Bad sunburn?" - my flabby arse! It was far worse than that as the skin dried out, cracked, blistered and bled. Of course my mouth and throat dried out making swallowing very hard on an already uncertain appetite, and my sense of taste dried up as well. (Those of you've who've seen how I dress recently would have to agree!)

The burnt areas are healing well and I'm starting to swallow better. Lost a few kilos though.

Nonetheless, with some strong pain killers (Endone and Oxycontin) it was easy enough to manage - especially when the results were so amazing. It went from a lumpy horrendous mass, to something recognisable as an ear (well, most of one.) Most weeks I would get a photo taken to document the changes. Everyone was happy: the radiotherapists, cancer care nurses, and oncology specialists. Oh yeah - and me.

This is the tumour as it looked 14 APR 2014 after nearly 7 weeks of Radiotherapy. Lots of burning, but the remains of my ear are visible and clean. Click it for a larger viewable version.

Every so often I would text my brother a copy of the latest photo. Last week, having received that, he came around one evening, a bit concerned. He seemed to think that something was growing back. I looked at some of the earlier photos and compared them to the latest. My brother had a point and that got me worried. I asked one of my regular Community Nurses. She too was starting to get suspicious.

This Monday (5 MAY) I was due for a regular check-up at the Radiotherapy Unit at Wollongong hospital. I decided to print out a single comparison sheet containing four photos - 2 of the earlier ones and 2 of the latest. To my own inexpert eye it seemed as if a new tumour was starting to bubble up along the top-front edge of my ear and down into my ear canal.

I thought that I might be in for a bit of a fight to see my oncologist on the spot, but after the oncology nurse looked at the sheet of comparison photos, my specialist was there within 2 minutes. He looked carefully at my ear. "So, are my suspicions well grounded?" I asked. He looked grim. He simply said "Yes."

The Radiotherapy was only partially successful, and the cancer is growing back.

This is the tumour as it looked 4 MAY 2014, only 2.5 weeks after Radiotherapy was complete. The "bubbling" areas at the top & front of the ear, and the nodules inside the ear-canal, are the returning cancer. Click it for a larger viewable version.

This makes me feel somewhat ripped-off as it was all looking so good. To go from the mess that it was to something that might heal up to look vaguely normal had been quite a relief for me. Now we were back to square one!

It is a Squamous-Cell Carcinoma (although I don't have a "stage number" for it yet.) I'd left it for so long that scans revealed it has penetrated the bone. I was told all those many weeks ago before therapy began that it would be a difficult case but "they would see what they could do." At that stage they didn't even really know if any of my ear would be left, or if it had all been "consumed", as they say. The initial results were so positive, so much better than anyone thought would happen, myself included.

Until Monday.

The doctors at the Cancer Care Unit held their weekly meeting and Case Conference the next day (Tuesday 6 MAY). I didn't expect to hear anything about it for at least a few days, although my brother and some other relatives rang me that night to see if there had been any result.

My radiotherapy oncologist had already made it clear that further radiotherapy was probably out of the question. I'd received the full dose that they could give me. Any more radiation beamed into my head would only have the opposite effect and cause more cancer.

As for surgery - it would have to radical, and given the state of my liver and kidneys ... not advisable.

One positive is that according to full body CAT scans a while back, and as far as I know now, the cancer has not metastasised (spread.)

Thursday evening (8 MAY) I got a phone call from my regular oncology nurse. I am booked to return to the hospital next Wednesday (14 MAY) to see a Medical Oncologist, with a view to discuss starting Chemotherapy.

In the meantime, all of my family and friends know this and I've had phone calls, e-mails and texts left-right-and-centre with lovely messages and offers of support. I suspect however that my brother will be working next Wednesday and I may have to go and see this new oncologist alone. This is not something that I'm looking forward to.

For all of the love and friendship that you have in your life, sometimes you end up standing naked and alone before the oncoming storm, and there's not a fucking thing you can do about it.

Except laugh.