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...

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!

Antique Monopoly

I thought that we might have a quick break from some of the darker stuff going on.

The other day I was going through some old stuff - having an "Autumn" clean - and found this: my parent's old Monopoly set.

I know that it belonged to my parents because I remember playing with this copy of Monopoly as a child, sometimes with playmates, but most especially with my brother. During school holidays, if the weather was a bit dull or worse, we would have Monopoly marathons which would last up to 3 days.

When we ran out of Monopoly money, we'd steal the money from our Payday game, and simply continue. Of course, we had to change the rules to make sure that none of us, would ever go bankrupt and have to stop playing. This is, until we were sufficiently bored or the weather fined up and our parents threw us out of the house.

The set was bought by my parents around 1965 or 1966. This is because of the address on the box comes from a time not long after I was born.

This bloody scoundrel's got my parent's money.

What do you mean no batteries required?

I know that there are many different varieties of Monopoly these days - but this one is from them olden days with the proper London street names - all assigned upper, middle and lower class property values, as was fitting at the time.

"By Jove, we're British and must respect the class system don't you know!" Piss off Grandpa. The game of Monopoly is a U.S. invention anyway.

The only utilities that you could invest in were the Water works and the Electric company. None of those fancy mobile phone services, cable TV or internet service providers.


And Free Parking in London? Did that actually used to happen? Perhaps you might find some now what with the congestion tax and all.

I suspect in London if you had enough money you could always buy your way out of jail - but getting out free?

It still costs a ridiculous amount of cash for your Barrister, and perhaps a few bribes for some dodgy judges, politicians and warders.

What's that Grandpa? "The youth of today are just good-for-nothing rabble rousers. I reckon them coppers should lock 'em all up and throw away the key." Piss off Grandpa!

However, the powers-that-be seem to be listening to you. Rates of youth incarceration in countries such as the UK, USA and Australia are higher than they've ever been. The popular solution is not more social support and proper job creation. It's to build more jails.

Now you can buy the jail itself, and still have some change left over to pick up a nice slice of the privatised railway - certainly in the UK. Why does it always seem that so many Public-Private ventures end up in a screaming monetary mess, and it's us poor fucking taxpayers who always foot the bill?

We're selling off the farm, guys!

I always loved the fact that in this old version of the game, the currency is in Pounds. Good old British (or perhaps Australian or New Zealand) Pounds. When they still had shillings and pence too! "Proper money, not like those Yankee-style decimal currencies," grumbles Grandpa.

"And what do you mean we're metric now? Harrumph! Never did like those uppity French chappies anyway." Piss off Grandpa!

To my eye the old pound £ symbol always seemed a little more elegant than the dollar $ sign. Sort of like a lot of old symbols such as the Ampersand or the Treble Clef. So nice to write.

As for the metric system and decimal currency, I'm a big fan. It's my scientific background I guess. These systems may lack a history, but they're clean, logical and easy to use.

These look more like Euro notes rather than modern pounds. And the £1 note is now a coin.

Nonetheless, the actual notes were nice and colourful, unlike real Pound notes at the time, and certainly more interesting that the "greenbacks" of the US currency. They all look the same!

They say that life is a game of chance, and at its core, the game of Monopoly is the same. You never know what the next throw of the dice will bring. You can go from potentate to pauper in a small number of rolls.

If that's the case then I've rolling some bad numbers over the last few years.

Note that in the picture above, one of the original wooden dice is missing and been replaced by a plastic one (on the right.) I guess that's what happens when kids are allowed to get near games like this with lots of bits and pieces. "Mummy, I just ate the little dog. Soooorry."

I would put in a picture of the little dog, or the iron, or some of the other standard tokens, but they are missing. I think I saw them somewhere during the Great Cleanup of the family home when my father died. I wouldn't have thrown them out, but at the time couldn't find the Monopoly game itself.

These are the rules, based on the Industrial-Capitalist economic systems which seem to rule much of the world.

One of the basic rules is that if things are tough, and you don't have the money, then you're fucked.

Mind you, if you're rich then things can go down the gurgler in a very short space of time.

Owning property seems to be the key to success in this game, and you can collect some pretty stiff rents, from seemingly random passers-buy, and they're only wooden houses!

In the real world this is called extortion and you may indeed proceed directly to jail.

Unless you're a successful underworld figure, or as they are called in Sydney sometimes "a colourful racing identity". Then you might get that "Get out of Jail Free Card."

Mind you, if only we could pay rents like that now. £200 for a single house is just a dream.

Especially in a place like swanky Mayfair. Although perhaps the area is not all that it's cracked up to be. Not these days.

Times, and what is cool and expensive change pretty quickly. The rent for a new East-End apartment must be pretty astronomical! Then again so is a wooden cottage in inner-city Sydney (watch out for the yummy asbestos...)

Anyway, it was nice to find this set, a piece of my childhood (and that of my brother's.)

Better go now. It's stupid o'clock in the morning - and I have to be up at 6:30 to get to the hospital to have my very first Chemo hooked up. Is that anything like your first My Little Pony?

Yes, you guessed it, Mr. Pain has come for a serious visit again. Feels like he's moved in. I wish he'd fuck off and go rent a wooden house in Mayfair.

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 ...

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.]

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.