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...

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

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.