5 days in the post-op recovery ward, finally ready to face the world (virtually). Last Thursday I had the major surgery, which involved 2 separate entry points to remove around 20 lymph nodes in total. One entry was to the side of my groin, where your thigh meets your torso, and the other was along the bottom of my stomach. We don’t get results for a few more days yet, as it takes time to inspect the removed nodes and do all that doctory stuff.

Pancakes every day? I could get used to this.

Since then, until today, i’ve been laying flat on my back on a hospital bed. It’s one of those life lessons that puts previous experiences into perspective. The pain and discomfort is one thing, handled mostly with drugs, but until you’ve spent 5 days in a bed flat on your back, with no toilet trips or even sitting up, you start to realise the TRUE meaning of “stuck in bed”. People say they’re “stuck in bed” or “bed bound” plenty of times, but rarely are they ACTUALLY stuck in bed. I couldn’t sit up to eat, I couldn’t roll over to sleep, I couldn’t shift into a different position if I got uncomfortable or lose circulation… the only movement I had were my arms, with one usually attached to IV and Antibiotic drips, and some small movements of my right leg (anything more than a few inches was enough to nudge the mattress and hurt the left one). “Awkward” doesn’t even do it justice.

The reason I say all that in past tense, is today I got some movement back, and it’s AWESOME. I managed to get out of bed with the aide of 2 nurses and a walking frame and hobble to a wheelchair a meter away, which I could then shower in. Awkward, but after 5 days, it was heaven. It was also really hard work though (even though the shower is 3 meters from my bed!), and still very very painful, so since then i’m back in bed again. I can at least sit up now to eat or chat to visitors, and can use my laptop on the dinner tray thingy… hence this post.

In saying all this though, i’m not after situational-pity, it’s just to set up the physical scene in your minds. I’ve actually been fine mentally, and haven’t really been bored or anything yet either. There’s plenty of drugs for the pain, plenty of sleeping tablets for the night time, very friendly nurses who bring me cupcakes or sit and chat, and surprisingly good food (except the stew, don’t touch the stew). There are a few Foxtel channels available, and i’m allowed to use my phone which is Android based (meaning i’ve got a web browser, games, etc)… so apart from physically restricted environment and obvious pain, i’m mentally still quite positive and coping with it all ok. Still can’t wait to get out of here and go home to mum’s for the proper recovery (~1-2 months of home-care by community nurses, and 2-3 months total recovery until i’m properly back on my feet).

There is no definite word on when i’m out of here yet. Best estimates at the moment are “later this week”. It mostly depends on the drains in my wounds, as I currently have multiple and they need it to be down to 1 drain that the community nurses can take care of. So, whenever my body decides to stop leaking, I can go home and continue recovery there.

Now, some random musings…

A week in hospital, properly “bed bound”, has taught me: Considering there surely has to be a fair few people in hospitals in this exact same situation as me, they are surprisingly badly set up for it. These are just some of the things i’ve come across:

• Problem: Going to the bathroom. You either need to be able to walk to the bathroom, get into a wheelchair, or use a bed pan. If you’re stuck on your back, unable to move, you can’t do any of the above.
  Solution: Surely it can’t be too hard to have a bed designed for people stuck in this position, with a removable panel under the appropriate area, much like the toilet/chair hybrids they wheel patients to the bathroom on. Remove the panel from below, put a bed pan there, replace panel when done. Would’ve made the last few days a LOT more pleasant and a lot less painful… but i’ll spare you the details :p I know it would involve a separate piece of mattress on the panel, and might not be quite as comfortable as a regular bed here, but it’s not exactly like the beds are that good anyway, and i’d happily trade a bit more discomfort for the ability to go to the bathroom without people lifting me, morphine injections, etc.
• Problem: The all-in-one remote that has your TV controls, nurse alarm, light switch, etc. Again, if you’re stuck on your back unable to move, they have some massive flaws. If you drop it, it’s tethered to the wall away from you, not to the bed, so it automatically gets pulled away from the bed as it falls, and you can’t reach it. I end up having to keep it next to my ear, half-lying on the cable so it doesn’t fall, but it doesn’t always help and it also leads to:  It doesn’t have a cancel button on the nurse buzzer. So, combine the dropping of the remote often, bumping it with my arm or other body parts, etc… I end up buzzing the nurses a lot without meaning to, and that’s just not right considering they’re already run off their feet. It’s not just me either, in my room of 4 it easily happens 8-10 times a day.
  Solution: There’s already a chin-up handle above you, that you can use to get in/out of bed. Attach the remote to that, and you’ll always have it in reach as well as never being able to knock it off your bed or accidentally trigger the alarm. Throw a cancel button onto it, just in case, and you’ve solved the problem, and saved the nurses a lot of wasted time.
• Problem: A bed that can only be adjusted manually, via a handle down at my feet. Nice one. I have to get visitors or nurses to life the head part of the bed up a foot or so every meal time so I don’t choke, and back down when i’m finished eating… every meal.
  Solution:  It’s not really a “Problem”, they just ran out of good beds. Everyone else in my room has fully automated beds that adjust umpteen different ways, I just wanted to whinge in this case ;)
• There’s more, but I forget now. I really should write things down.

Anyway, it’s time for more drugs now, and hopefully get some sleep. I know this post is a LOT more rambling and random than usual, but my brain isn’t exactly in it’s comfort zone, and I originally didn’t want to write anything until it was, but I figured you could all use an update… so here it is.

G’night :)

This isn’t the credits, because this isn’t the end. This is just the summary of who was involved so that it’s down on virtual paper. As hard as it is to admit, it’s unavoidably there: We just don’t know what’s going to happen, or how long i’ll be here now. So, I figured this was a good thing to do.

Me & my financial controller. ;)

This piece of writing all stemmed from a valium-induced dream. I haven’t been sleeping well for understandable reasons: I’ve got just a wee little bit on my mind lately (heh), so my doc gave me some valium to help me get some well-needed sleep. I’ve never had any form of sleeping tablets or medication like this before, so it just knocks me out (8-10hrs a night), but it also results in some scarily realistic and detailed dreams. The sort’ve dreams that you get “lost” in, and almost feel like you’re actually inside them, living through an alternative strand of your own reality. In this case, it was almost like I was taken through a “This is your life” type situation, with a whole bunch of people, places, and moments of my life paraded in front of me. I woke up with this urgent feeling that I needed to write it all down, as it accurately summed up the important aspects of my life, and some of the iconic people and moments that made me the who I am today.

The typical disclaimer when doing any list of people: This isn’t everyone. I’m not even attempting to list everyone, as that would end up being novel-length. This is just a few people that were in my dream, mostly related to my past and my growing up. It’s also why there is the glaring omission of my gorgeous wife. It’s not that she’s not important to me, it’s just that she doesn’t appear in nostalgic dreams, as she wasn’t in my past. Plus, if I had to write about how amazing she is, it’d end up being a 40-page plus Hallmark card, and would get my man-card revoked ;)

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The Family

Summary: Parents split when I was young, so I got to live 2 separate lives. This had it’s good and it’s bad, but mostly I think it was good. Dad moved around lots, so I got to experience a lot of amazing places, meeting amazing people, eat amazing foods, and see amazing things. Mum set up shop in the Blue Mountains, and gave me the stable “family home”, the local friends that I still know today, the local places that are still there for nostalgic trips, and the comfortable feeling of having a place to depend on. 108 represent ;) (private joke).

Mum

The stability in every aspect of my life. Mum is the only person I know who not only still has a home phone number, but when you call it she’s actually there and answers. In a world of wireless connections and playing phone-tag with someone’s mobile, having a mum who still lives in the same place I grew up in, with the same phone number I grew up with, and who still dotes over me like I was a kid, is awesome (well, mostly!). Mum is the one who anchors everything to reality, by cooking my favourite desserts when I find out I have cancer, or making sure that when I visit, my bedroom from when I was a kid is still there and ready for me. It might sound corny, but when you’ve moved around as much as I have (see “Dad”, below :P), having these things is something I wouldn’t trade for anything in the world.

Dad

Dad creates the spice in life, and is the infinite source of logic and wisdom. Thanks to dad i’ve lived in crazy places like on-site at RAAF (Air Force) bases while going on holidays in the back of Hercules cargo planes. I’ve lived in squats while he chained himself to nuclear submarines as a peace activist. I’ve travelled the world before I hit puberty, lived in Amsterdam, and been to boarding school in the Swiss Alps. I’ve lived in converted churches in Sydney, and been to some of the coolest schools and most interesting places on earth. Dad is also the one who answers questions. Whether it’s typical father-son type stuff, or complex scientific musings about sustainability and the way the planet works. He was wikipedia before the internet existed… and is still more trust-worthy than the real wikipedia. He’s also one of my best friends, and the first person I call when I need a bro-chat.

Asher

Most humans survive off air, Asher survives off Macaroons.

It’s funny how brothers work. When we were growing up, you couldn’t put us in the same room without one of us ending up in hospital ;) Ok, it wasn’t quite that bad, but it was pretty bad. We couldn’t be any more different. He’s artsy, creative, musically talented, and extremely resourceful. I’m a computer in comparison. I’m logical but hopeless at anything that requires creativity or artistic dexterity. We liked the opposite music, we liked the opposite sports, I reckon we couldn’t have been more different if we’d been forced to at gun-point. But then, somehow, we grew up to be best friends. Now, he’s pretty much the first person I tell anything too, and the first person I turn to when I need an opinion. He’s my favourite person to hang out with, and one of my favourite people to talk to.

Poppa

My poppa was the stereo-typical “Grandfather role-model” type figure in my life. He was the one who made us laugh, the one who snapped us into line, the one who taught us our bad habits and the one who spoiled us when mum wasn’t looking. He was everything you wanted in a pops. He had amazing stories that you could listen to for hours, and he could make you laugh no matter how bad things were, and he could make you realise that life has good and bad sides, with a single anecdote. A huge amount of my life wisdom comes from stories my poppa told me, and a lot of my fondest memories are of trips with him when I was young. Fishing with spear-guns, road-trips in his campervan, and home-made honey on home-made damper. If I could be half the man poppa was, i’d be 4 times the man most men are today.

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The Friends

Summary: I haven’t had many friends in life. It’s been one of the sore-points, in a way. Partly due to the moving around so much, partly I guess due to my personality (i’m not good with strangers, socialising, etc). It’s very hard for me to meet new people. Very very hard. Due to this, the friends i’ve had, have been truly amazing.

Ed

Probably the most influential and iconic friend i’ve ever had. When I came back from Europe with no friends, and no social skills, Ed was the guy who didn’t judge me on the fact that I didn’t fit in, and didn’t judge me on the fact that I liked different things to most kids. He didn’t care, and that sparked the closest platonic friendship (bro-ship?) i’ve had with anyone in my life. We lived together, we worked together, we had some of the most amazing life-experiences together. People say they have friends as close as brothers, but in some aspects Ed was closer than my brother, due to not having that conflict that “family” brings into the equation. Eventually, we parted ways, for reasons i’m not even sure of (I guess it just happens eventually), but he’s my most-missed friend of all.

Tinu

Martin (or Tinu) was one of the few people in Switzerland that I really clicked with. Boarding school is a very cliquey place. You need to fit into a social group to survive, and I didn’t fit into any. He spanned social groups, and was one of the iconic friends that teach you a life-lessons: Social cliques are stupid. Yeah they might be a necessary part of high school, but for people like me who just don’t fit in, it can be a painful period of your life. Martin taught me to escape into hobbies, and helped me really absorb In-line skating (this was back in the 90s kids, when it was still ok to rollerblade :P). The times I spent skating with Tinu are some of my fondest memories from that era of my life, and i’ll never forget him. RIP Tinu.

Justin

Everyone needs someones they can cut loose with. If you’re a guy, it’s usually whoever can keep up with you on a drinking night out ;) Justin is most definitely this guy for me. He’s the only guy that could keep up with me on a night out, or in an argument, or when eating, or when playing a video game, or… well… with anything, really. If life was a game made up of 2-man teams, Justin would be my team-mate, and we’d kick life’s ass. He’s also another source of wisdom and inspiration for me, and it’s really scary how little there is in life that he DOESN’T know about. The technical details of digitally encrypted audio? Check. The intricate characteristics of fine foods and drinks? Check. Various traits of different cultures? Check. String theory? Check. Complexities of the finance world and interest rates? Check.

Duff

While one of my “newer” friends in the scheme of things, Duff is someone who knows me better than most people, due to our extreme similarities (mostly our good looks!). From tastes in music, bikes, food, and drinks… to our approach to life: “Bugger it, let’s just eat until the problem goes away”. Duff had the pleasure of being my housemate for a while in Newtown (one of Sydney’s pub/night-life hubs), and from what we both remember of that period of our lives, it was apparently pretty good. He has also been a major contributing factor into my motorcycle obsession, and while i’ve liked bikes since before he was pretty much born, his without-doubt superior skills has always motivated me to ride better, and ride bigger.

Tim & Sam

These 2 brothers get similar praise to mum, in the sense that they’re another sign of stability or the turmoil of my life. While I don’t see them as much these days as i’d like to, just the fact that i’ve known them longer than i’ve known any other non-family person, is a huge deal to me. From playing on trampoline as kids together, to going to the pub as we became of legal age. Tim & Sam are the closest thing I have to child-hood friends, and I really hope that they end up being guys that I know well into my old age.

~~~~~~

The Places

When you’ve lived in 40+ houses and gone to 13 schools in 30 years (and that’s while still managing to drop out by Year 11), you look at “places” in a whole new way. I very rarely settle in anywhere, and am quite known for living out of boxes even if i’ve been at a place for 6 months or more. At the same time, the few places that I did settle in at, are extremely important to me, and serve as iconic landmarks in a constantly moving (pun intended) life. In my eyes, i’ve lived 2 lives… a city life (usually with dad, or on my own as an adult), and my mountains life (mostly with mum, or my time in Europe). Each of these lives has it’s own hobbies, interests and memories, and both existed simultaneously as I bounced around in life.

Hazelbrook

CVIII

The infamous 108. Hazelbrook. Such an iconic address, I ended up getting “CVIII” tattooed on my arm. This has been the stability in a life as stable as a tectonic fault. I could write a book based purely on my life’s various intersections with this place, and it’s absolutely my favourite of all the homes i’ve ever had. Thankfully, it’s still my home (away from home)… as mum has been living there for the last 20 plus years. This is the basis for my love of the country, love of the mountains, and love of all things related. Camping, bush-fires and BBQs, long walks in the bush and swimming in waterholes. No matter how bad life is, a simple trip up there is better than any meditation for me. I still visit as much as I can, and my few months recovery after this next surgery will mostly be spent up there. Hazelbrook (and the Blue Mountains in general) is the place I go when I need some solid ground. My favourite foods, my favourite shops, my favourite roads to ride my motorcycle on, all my favourites are up there.

St Peters

I’m not even sure how long we lived in this house, but it’s a significant memory in my past, so it must’ve been at least more than the usual 6 months ;) Most of my child-hood memories are based around this house or Hazelbrook. St Peters was a house I lived at with Dad and my step-mum Michelle, and my bro Asher. It kick-started my love of the city, and my city-kid personality (although ironically, lately i’ve been craving the country again). St Peters let me live the stereotypical city-kid life. Playing in local playgrounds until the sun went down, which of course meant pushing the limits of daylight savings time until we got yelled at. Collecting trolleys at Marrickville Metro to get the 20c deposits by returning them, and then spending the couple dollars we made on lollies and making ourselves sick. Climbing on the roof of our house, and using it to jump to the roofs of the houses next door. Playing tag in the streets, and thinking nothing of the fact that our street was off a very busy main road with lots of semi-trailer traffic. Fun times.

Holland

What Australian kid wouldn’t want to live in Europe? Walking to school on frozen canals, and sliding down snow-covered hills in the park. Living in a strange place with strange customs and strange language and strange foods (but what amazingly delicious foods they were!). That feeling of being an international kid in a new country, is a special feeling that i’ve never matched again in my life. It can’t be put into words, it’s just a feeling. It felt awesome.

Switzerland

Yep, that was my home. 2nd floor, far left window.

Wow, where do I start. I think this one is best summed up with a simple description of where I actually lived, to put it all in perspective: The school I went to was called Ecole D’Humanite, and it was situated high up in the Swiss Alps, in a town called Hasliberg-Goldern. To say this was a picturesque place, would be like saying Everest is a “bit of a hill”. Our school was a grouping of buildings on the side of a mountain, looking across a valley, at snow-capped mountains with glaciers coming down the side. I spent my day playing basketball on an outdoor court with those same mountains in the background. In winter we got more snow than i’ve ever seen in my life (including on TV or in movies), sometimes in big enough amounts that you could jump off the 2nd floor balcony and land in the soft powder snow below. The school had an alternative view on education, and we spent our days concentrating on subjects that we actually enjoyed (for me it was pretty much all of the sciences, and multiple languages), and in winter it was compulsory to go skiing and snowboarding all day when the weather was perfect. We lived in houses with small groups of students, where you shared a room with a friend, and had “house parents” that were also your teachers. There are no adjectives in the english language that sufficiently summarise my time there, and I could write a post 4 times the length of this one purely on my experiences there.

Newtown

While it might seem insignificant in comparison to the previous place I just mentioned, Newtown is the place i’ve spent more of my life in than any other place, so it’s probably the one “area” that I feel closest to. The catch is, it wasn’t while living at a single house. This means that the area itself feels like home to me, but i’ve got no ties to any individual street or house (Hazelbrook still wins the top spot due to this). I’ve lived in Newtown (or the surrounding few suburbs such as Erskineville and Camperdown, usually still collectively referred to a Newtown by most people) about 8 times so far in my life. This has created a collective of experiences, memories, and friendships that compile into a single feeling of this area being a home for me. It’s the culmination and end-product of my city-kid child-hood. I still visit the same bakery I went to after school as an 8 year old, and I still order the same sausage rolls and vanilla slices. I still go sit in the same parks I played in as a kid, but this time it’s usually with friends and beer, instead of friends and a soccer ball. I still walk up and down the same shopping strip that I walked down after school, but now i’m visiting pubs and shopping for dinner, instead of visiting video game arcades and shopping for lollies (ok ok, I admit i’d still visit the arcades if they still existed!). It’s also interesting that this area has some of my earliest memories from when we lived in St Peters (right next to Newtown), and then I live here again now with my wife, in our first home together as a couple. Newtown is my favourite place in Sydney, and if I couldn’t live here, I wouldn’t live in Sydney at all.

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So, that’s it. That’s pretty much the dream I had, expanded with new memories that arose as I typed it all out. This has been another “non-stop rant-style type-fest”, with no planning or thinking (mainly because memories are painful when dwelled on)… so excuse any typos or errors, and I hope you enjoyed the read. Now it’s time to get some rest, and get ready for surgery tomorrow morning.

Next update: Me minus a few kilos of body parts.

Waiting, wondering, worrying.

While I appreciate all the suggestions, and am looking into as many of them as possible (and have already started on a few alternative therapies I never would’ve considered worth my time before this), it’s all a bit overwhelming. All the input from everyone is done with good intentions, but similar to back-seat driving, even good intentions can be difficult to process when you’ve already got a lot on your mind.

I find the hardest part of all of this though, is the mental aspects, and how to handle each day of waiting, wondering, and worrying.

The physical side is pretty much covered by the doctors, surgeons, specialists, etc. Sure, you have to listen to all they have to say, consider the various options, and make a few decisions… but you get a lot of guidance and support throughout it, and a lot of help in making those decisions.

With the mental side though, it’s pretty much up to you to handle it how you think best suits your own mind, and that’s a bloody hard thing to do with cancer, as there’s no real guidance or procedures on how to mentally handle the fact that you’ve got a deadly disease with no real cure.

This leads to one of the most common phrases I hear from nearly everyone who has spoken to me recently:

“There’s no right or wrong way to deal with this.”

That’s exactly the problem. With just about anything in life you need to go through, others have gone through it before and figured out how best to approach it. It might not work for every single person, but it works for a large majority… and in general, is considered the “right” way to approach it.

Want to have a good relationship? Pay attention to your partner, provide what they need, make sure you communicate, spend lots of time with them, and generally just don’t be a dick.

Got the flu? Stay warm, rug up, eat lots of fruit especially stuff with vitamin C, stay hydrated and get lots of rest.

Stressed out at work? Take some time out for yourself, make sure you get enough sleep, break up your day with a walk or get out in the sun, turn off your phone and don’t check emails outside of work hours, and spend some time with your friends.

Got cancer? Well you could TRY eating/drinking lots of foods with ‘x’ and ‘y’ in it… but ‘x’ and ‘y’ change depending who you talk to, what day it is, what trials are running, what country you’re in, or how the planets are currently lined up. You could TRY meditation and acupuncture, calming yourself, thinking positive, or exercise. You could TRY chemo, or interferon, or this trial, or that trial. You could TRY getting more sun, or less sun, or Vitamin D tablets instead of sun, or … well, that’s just it, we don’t know, sorry. We know some of these things have helped some of these people, some of the time, but we also know that some of most of these things have NOT helped most of these people, most of the time.

Daily supplements. Not shown: pain killers, sleeping tablets, anxiety tablets, etc.

There’s no proof that accepting it and thinking positively will help. There’s no proof that denial and escapism will work. There’s no proof of, well, anything. You just lay there, thinking about the fact that you’re effectively rotting away, from the inside out… and not knowing what you should think, how you should approach it, or what you should do. You take stabs in the dark, and try and be super-positive and ignore it all, in the hope that it will somehow sort itself out. You go through meditation and breathing techniques, in the hope that the anxiety attacks will go away. You take 20 pills a day, covering every known supplement that has shown “some” sign of helping, as well as pain killers and sleeping tablets and anxiety tablets and more. You experience mood swings like you’ve never felt in your life, and there’s no-one, and no-thing, that can tell you what you should do, and how you should do it, with any real certainty.

It’s also not a relationship or a flu that we’re trying to deal with here. Every decision, every experiment and every option, are potentially a life/death decision.

It’s all just a huge numbers game… and the percentages suck. 10% chance of chemo helping, with a 90% chance chemo will put you through hell. 70% chance that it’ll come back in 3 years even AFTER we aggressively operate and go through all the associated risks. 36% chance of survival over 2 years, and a whopping 19% chance survival over 5 years. Yes, all these stats are just averages, and are never accurate for “the individual”, but it gives you an idea.

While throughout all this, I still remain quite positive, there are just a LOT of thoughts that go tearing through your mind that you wouldn’t normally need to deal with. Even when they might cross your mind, they’re very detached. “IF I had cancer, what would I do?” is a whole different world to “Holy crap, i’ve got cancer, what do I do?”

Ah well. Throughout all these, my opinion hasn’t changed. There’s not much I can do now, but hold on, and go for the ride… it’s just one really shitty ride, and I can’t wait to get off.

Cancer seriously DOES suck.

PS: A little side-note, since no post here can be without at least a touch of humour. Every single post on this site so far, has been written spur-of-the-moment, usually on my phone (HTC Desire), usually while on the loo or waiting in a doctor’s office. This is the first post that I actually planned, thought about, edited, revised, etc… and I hate it. It took me 2 days to write this, and I think it’s crap compared to my others.

I’ve been getting a LOT of comments about how well I write, and it’s just really really surprising, as i’ve never really written properly in my life. Everything I write is usually just blurted out in a constant stream, similar to talking without thinking, and I don’t even proof-read or edit it before hitting ‘Submit’. So: Thanks for the compliments. It has made me feel really good throughout all this, and has motivated me to write more, and experiment with my writing styles (eg: this post)… for now, i’ll go back to my non-planned rants though ;)

Last week on Thursday I went in to work for what would be the last time for a few months. I had some loose ends to tie up, some quick code to push out before I left, and some meetings to do hand-over so that they were ready for my absence. It was a good feeling, being back, and also a bit sad because it reminded me how nice it was back before all this happened. I can honestly say that I love my job, so the fact I haven’t been going is a very vivid reminder of how serious this all is.

I need my fix, dammit!

When I got home, i’m welcomed by the wifey saying our net was down. Not unusual. We have a pretty complicated home network, combined with an older router, so it’s not unusual for something to fail and me having to reboot the modem or the media server or something else. Then I saw the modem status screen: “Physical Down: No Line Sync”. Crap. A quick call to iiNet, and it was confirmed… Telstra broke our phone line. Whether they accidentally disconnected it, or changed something, or tripped over a cable… it wasn’t anything that could be fixed immediately, so we had to submit a “Fault” report, and now we play the waiting game. Days, weeks, they’re not sure.

Now, for anyone else, this probably isn’t a big deal. An annoyance, maybe… but not much more than that. For me, it’s pure pain. I live on the net. I spend every woken moment connected somehow, whether it’s via my phone or at my laptop or at my desktop at work. I get my entertainment via the net  thanks to my 3 terabyte media server, streaming media, streaming audio, and i’m a hopeless YouTube addict. I do all my communicating via the net with my various blogs and websites, chat, forums, social networks, etc. I do all my reading via the net on various news sites, aggregated content sites, RSS feeds, etc. Most importantly of all (and the entire reason this particular outage is so bad): I get my escapism from the net. It takes my mind off things, and is a stable home in a turbulent life. No matter how bad my day was, I can jump online and everything is the same as before. My online friends don’t know about me going through this, so they treat me the same as before. My daily sites that I visit keep going as though nothing bad is happening to me. It’s a nice way to just get away from everything, and feel like my life is normal. It has pretty much been the single reason I haven’t lost my sanity yet throughout all this.

So, while a net outage might be trivial for other people… for me, it’s a dangerous dose of reality that I can’t escape, and that I really don’t want to deal with right now.

Thanks Telstra. I’m not even with you guys, yet you manage to negatively impact my life.

In other news (and something a bit more relevant to you lot reading this), here’s the update on what’s happening the the whole cancer thing ;)

I knew there was a brain in there somewhere.

Friday we had the meeting with the surgeon, Dr Spillane, about the full body CT scan results. This has been a particularly scary result to wait for, and something that has had the entire family very distressed over. After the last surgery, and them finding that the cancer has actually spread into my lymphatic system, there is now a very high chance that it will start popping up in various parts of my body. The fact that 2 of the 3 lymph nodes taken out were cancerous, meant that there was also a big chance that it had already spread to other organs and/or my brain. Needless to say, the time between the following full body CT scan and getting the results (a week), had us all crapping ourselves. The good news is: Nothing showed up on the CT scans (outside of the area that we already know is cancerous). The not-so-good news is: The scans only show up tumours over a certain size, and it’s still undeniably possible, even likely, that it will show up in other places eventually.

It’s difficult to decide how to look at this. A clean CT scan result is obviously a tangible positive thing. However, knowing that the cancer I had right now wouldn’t have shown up on a CT scan earlier, due to the size limits, is a scary thought. It’s a reminder that the clean result doesn’t mean there’s nothing there, it just means there’s nothing there that is big enough to show up. It’s more of the way-too-common-lately “We just don’t know”.

The surgeon also explained what the next surgery is about, what exactly they’re going to do, and how big it all is. If you’re queasy about operations, don’t read the rest of this paragraph. They’re basically planning on 2 entry points, both to the left of my groin area. They’re taking a total of around 21 lymph nodes from both those areas. It’s a big procedure, that involves at least a week in hospital on various drains and tubes, and a few months of recovery. He made it quite clear that the previous surgery was “small” in comparison, and that “small” surgery had me stuck in bed for weeks, and still having difficulty walking today, 3 weeks later. I can’t even comprehend how much fun this next one is going to be (and to be honest ,i’m trying not to think about it).

What’s next on the agenda?

Monday I have the usual pre-surgery meetings with the anesthesiologist (try say that 10 times fast!), Tuesday I have meetings with my doctor & an acupuncturist (for muscle relaxation etc), Wednesday I have… something, I forget, and then Thursday morning is the surgery.

I’m also working on a few more big blog posts for this site offline, that I will finish and upload in the next few days. I’m currently online via one of those stupidly expensive wireless 3G cards, so i’ve got to use my access time well.

Lastly, I can’t even think of words to explain how amazing it is, to see the feedback i’m getting on this blog. I honestly created it expecting mum, dad, my bro, and a few friends to read it… maybe a few other family members if dad mentioned it in his usual family-wide emails. The inundation of comments and emails has been absolutely amazing, and has left me speechless. Thank you, thank you, thank you. I try to reply to what I can, but i’m usually replying via the mobile interface, from my phone, so I sometimes miss some. If I haven’t replied to you, sorry.

Beam me up Scotty!

One of the worst feelings, is waiting for results. I’ve done all the CT scans and blood tests and physical examinations, but now i’m waiting for the specialists/surgeons to look it all over and come to their conclusions for my meeting with them this Thursday. That means: Waiting. Lots and lots of waiting, and lots and lots of anxiety. People have said that i’m lucky not to be at work, lucky to have time off. I don’t think this is time off at all… work would be a welcome break to this, rather than this being a break from work. I’d give a limb to go back to work and have all this gone.

I’m still in a fairly significant amount of pain from the previous surgery too, which makes the waiting that much more difficult. While i’m finally able to walk around the house a bit, I still need pain killers to get through the day, and sleeping tablets to knock me out at night due to every movement in bed making me leg explode with pain. I never thought those last surgeries would create this much down-time. I’ve hurt myself a lot in my life… a decade of skating had me in hospital plenty of times with every single injury you could imagine… but in all of them, I was back on my feet in a couple days and back to normal in a week or 2. Here, they cut a few cm out of you, and you’re in writhing pain for 3 weeks, unable to walk, squat, sit, or even go to the bathroom without hurting.

The original tweeter... tweet tweet? (Yeah i know, bad joke :P)

Today I had most of the family come visit as a group, which was awesome. They brought yummy food from the deli, which was also awesome. Then they dragged my bed-bound butt across the road to the park to have a picnic, which was extra awesome. I still can’t get over that part of my treatment is to get some sun… it’s against everything you think you know about melanoma… but hey, the docs know a lot more about this than me, so off to the park we went and I got my 15 minutes of sun (followed by an hour or so in the shade) while I ate ricotta and ham sandwiches and fed a little bird that decided to hang out with me (see attached pic).

There’s not much else to write today… I just felt like throwing a post up here since it’s been a few days since i’ve updated the site.

Oh yeah, I also rebuilt the website as you probably noticed already, and activated the new domain, as I wanted something that better summed up what this site is about. My other domains still divert here, so no need to update anything if you don’t want… but CancerSucks.com.au is now the primary domain for this website. I’ve setup the Email Updates (sign up via the front page) as a fair few family members asked for that.

Lastly, don’t forget it’s Daffodil Day this Friday. I’ve always been one to support this (along with 1-2 other of the “_____ Day” events that have relevance to me)… but for obvious reasons this day now has a whole new meaning.

Shiny...

It’s a funny thing, the whole MS v Apple thing. I’ve seen people get into massive yelling matches over which is better, and why. I’ve seen friends become non-friends, and still to this day it’s a good way of turning a simple conversation into a heated debate (or a locked forum topic) on the finer details of why PC’s are crap, or why Steve Jobs should go DIAF.

To me, I see it a lot like the Holden vs Ford thing. Friendships are made and lost over which brand you prefer. Abbreviations for the enemy’s brand-name are flaunted like badges of honour. Fucked On Race Day, Heavy Oil Leaks & Deafening Engine Noise. Ironically the exact same event that brings all this competitive brand-allegiance to climax every year, the Bathurst 1000 race, is the perfect case to prove that at the end of the day, they’re both so similar that you can’t even predict which one will out-do the other in the ultimate comparison test. A race on the same track, in the same weather, on the same tyres, at the same time. They’re both just cars, that compete at such a close level that they end up being nearly exactly the same. And Apple’s v PC’s are both just computers, that let us get the exact same tasks done, in the exact same way (QWERTY keyboard + mouse/trackpad + screen), and usually on the net anyway, in a browser which further combines the differences into the exact same platform (HTML/etc).

People (especially males) are just extremely competitive about, well, everything.

To me, a car is a car, a computer is a computer, and as long as they both do what I expect of them, without pissing me off or exploding, i’m happy. The decision is just based on what I can afford, and which one haven’t I had yet, as i’m constantly craving new experiences.

First, some background (because i’m feeling nostalgic and found this cool pic of me):

I got addicted young...

The first computer I ever used was dad’s Apple Macintosh (Classic II, I think? See attached pic and comment if you know the exact model), where i’d spend hours playing with the paint application and various games that I don’t really remember. What I do remember, as clear as yesterday, was the interface, icons, menus, the sounds and the all-round “feel”. For some reason that always stuck with me, through the subsequent 20 years of being a geek, and I attribute it to being the main reason i’m so obsessed with UI/UX.

Since that first minute, I was addicted, and every since i’ve delved into and explored every aspect of computers that I could. After a few more Apple’s I built my own 386′s and 486′s and wrestled with DOS, then Win 3.11. I spent hours trying to figure out the right init string to get my modem working, or the right sound card settings to get Impulse Tracker in beautiful 16-bit stereo. I hacked apart the Windows 95 boot screens to create my own custom animations that played with the PC started up. I got hooked on gaming, and spent 12-14 hrs a day playing Space Quest, Police Quest, Wolfenstein, Doom, Descent, and flight sims. I obsessed over and studied everything to do with this new thing called the World Wide Web, even if I was crippled by accessing it through Compuserve at first.

I’ve owned PCs with DOS, Windows 3.1/11, Win 95/98, XP, Win ME (eww!), Win 7. I’ve had Linux variants at home such as Debian, Fedora, Ubuntu, and Mint… as well as managed servers running on Red Hat. I’ve torn all these systems apart from a hardware and software level, and obsessed over how it all works… but i’ve never owned an Apple computer again since first playing with dad’s early ones. I don’t think i’ve even touched or used one since.

I could write for 200 pages plus on my history with computers, but that’s not the point of this post, and i’ve already gone off on a big enough side-rant ;) So, the point:

Last week I finally bought a Mac. It’s a 15″ Macbook Pro, the new i5 version, and it’s one hell of a nostalgia-trip to be using this thing. Here is a basic rundown of my opinion so far:

• First impressions last. My first impression of the Mac, was that this is the first time in my life i’ve had to fill out my occupation, and actually have it listed! Yep, that’s probably the most trivial and pathetic reason to give something kudos, but seriously, i’m so sick of having to dig through an occupation list for 5 minutes deciding what random section I fit under, as even in this day and age so many companies don’t list IT as a profession in their forms!
  

  Yay, I exist!

• Apple know how to use just the right amount of shininess and flashiness, and just the right amount of nostalgia. Seeing the exact same wrist-watch icon that I saw on the original Macintosh, is an epic trip down memory lane, and a very nice touch. Meanwhile the interface on OSX is slick, easy to use, easy to look at, and pretty much everything Windows 7 wants to be.
• Installing and uninstalling applications is really weird. I’d download an app, double-click it, and it would act like it’s installed. Then I can’t find it in my Applications folder. Then I go to the readme, and it says to drag it to the Applications folder. “But wait, didn’t I already install it? I guess i’m making a shortcut?”… so you do what it says, and it seems to work. Then you drag it off your bottom bar because you don’t wait it there, and it’s suddenly gone again. Yes, I got used to it after a few days, and know how it all works now, but it definitely wasn’t intuitive.
• Bringing up a context menu and then selecting an item with the multi-touch trackpad is… weird. Right-clicking on Windows opens the menu, and then you can move in your own time to click the item you want. In OSX you have to two-finger-click to open the menu, and then if you move the wrong way, or run out of finger-space and try and adjust, the menu closes. Awkward.
• The front edges of the unibody aluminium case dig into your wrists when you type. My wrists look like I feel asleep on a tennis racket after a few hours of typing.
• In saying that though, the smooth aluminium of the entire laptop is absolutely amazing. I’m a bit OCD about keeping my tech toys clean, and the fact I can just wipe it down with the palm of my hand and there’s no smudges, just nice clean metal, is pretty slick. The entire laptop also just feels so beautifully solid. The Toshiba & Acer laptops we’ve still got here now feel like rickety old cheap crap in comparison. Even my HTC Desire now feels flimsy and cheap compared to this.
• They keyboard is amazing. I’m a very fast typer (150-odd WPM at last check), and I notice big changes in my typing speed and comfort among different keyboards. I’ve actually bought my last 3 laptops based purely on how well I could type on them (and it was a contributing factor in this too), and i’ve gotta say this keyboard is like they keys are predicting what i’m reaching for.

So, in summary: Apart from a few nuances that i’m getting used to, I’m loving it.

Yeah, I know… I went on some crazy tangent in this post and most of it makes absolutely no sense, but considering everything going on lately with the cancer etc, I just felt like a little nostalgic geek rant mixed with boasting about my new toy… but now it’s medication time, and i’ve run out of steam… so here’s a picture of a fish:

I found Nemo...

http://today.msnbc.msn.com/id/38771115/ns/today-today_health/

Mike Celizic, a journalist for TodayShow.com, shares his journal with the world as he finds out he only has a few weeks left before his Lymphona takes his life (choosing not to go through chemo etc).

It’s a very powerful piece of writing, and i’m utterly speechless at the amazing bravery of his approach to it all. It very much reflects my own opinions, that if it ever comes to them saying to me that i’ve only got days/weeks/months left, i’d rather just enjoy my final time than go through all that hell… i’m just not sure if I have the guts to face death in the same way Mike does. I like to think I have.

I’ve already had moments where i’ve thought “Holy shit, I could be dying”, and it’s freaky as hell. It’s the most extreme, unpleasant, spine-tingling feeling i’ve ever had in my life.

I was going to write much more here about facing your own mortality, but I suddenly don’t feel like it.

Cancer sucks.

Even though he’ll never read this: Hope your final weeks are spent positively Mike. I only hope that when my time comes I can face it as bravely as you.

Bye bye lymph nodes, never really liked you anyway.

Today was one of those worser situations that we prepared for. I found out a few hours ago that the cancer has spread through my lymphatic system via the lymph nodes in my groin. That’s the area where they took 3 lymph nodes out 2 weeks ago, that i’m still currently bed-bound and recovering from. Of the 3 nodes they took out, 2 were cancerous, which is quite extreme apparently. This is a pretty bad situation, as it means it’s near definite that the cancer has spread through my lymphatic system and blood stream body-wide, so i’m now at a very high risk of having it infect my organs, brain, or other areas.

Tomorrow i’ve got a full-body CT scan to see whether it has already spread to any organs or my brain, and then on September 2nd (tentative) I go in for the big operation. It’s quite a serious procedure, taking 3 hours or so of actual surgery, and requiring a full week in hospital with various tubes draining me and fun stuff like that. It’s also a few months recovery, which will be the extra fun part, as this last one that gave me 2 weeks on the couch has already helped me lose what little sanity I had left (and left permanent ass-dents in mums couch and our own couch). I can’t imagine after 3 months. One thing i’ve already decided to do for entertainment, is not shave or cut my hair, at all, through this entire thing. I already look homeless after a few weeks… my goal is to look like a cave man by the end of it all. Unless they start chemo, then i’ll just look like an egg. A very big egg.

As for how i’m doing: I’m fine. I’m still very positive, and knowing me and how I react to situations like this, i’ll continue to be positive until bad things happen. Surgeries and pain, I can deal with. Lying on a couch, I can deal with. Lots of lots of pain killers, I can most definitely deal with.

Holy crap, I WANT ONE! ($4k brand new, kthxbai)

In all seriousness though, I’m expecting to crash pretty hard when I wake up in hospital with heaps of tubes hanging out of me. Hospitals and me don’t mesh too well. Probably because I don’t have a very good track record of coming out of them breathing. I’m very very particular about my body, and I like it intact… so they idea of tubes and open wounds, cold beds and cold hands, scares the crap out of me.

Until then though it’s about staying happy, staying positive, and staying distracted… so i’m concentrating on my awesome new laptop and how shiny it is, and my latest obsession, the Honda Zoomer (see right). I went for coffee with mum today and sat on one of these at Deus, and was amazed how comfy it was even with my messed up leg. I figure even if i’m all cancerous and messed up from surgery, I can still tear around Newtown on a little military-themed scooter to pick up meds or grab food, and terrorise the old ladies in my surgical gown while i’m at it. I might even get a little sign for the back… “Caution: Cancer on board.”

Those who know me well will attest, my mind is a crazy place. I like to think of it as a beautiful, race-bred, immaculately presented racing horse… that is completely and utterly bat-shit insane, overly energetic to the point of exhaustion, and totally uncontrollable.

It has this way of going off on amazing journeys exploring fanciful ideas and endless tangents at the tiniest hint of being left allowed to do so.

I usually keep it in check by obsessing over my work. Whether it’s my day job building websites, or my hobby building websites, I pour every minute of my day and night building websites or studying how to build better websites. See a pattern here?

I never planned to spend my life doing this. I had so many ideas of what I wanted to do with my life and I’ve started more careers than I can remember. I’ve been a baker, an audio/visual technician programming intelligent lighting systems, a roady working on major concerts, a retail manager at a clothing store, an office equipment salesman, a mobile phone technician, a graphic designer at newspapers, an event organiser, and I’ve run my own networked Xbox 360 lounges. All throughout this I was obsessed with the Internet and working on websites as a hobby. Then one day while working in a video game store I was offered a contract to overhaul a state government website, and next thing I know I’m their full-time web developer and all-round web/internet guru.

I love my job. It’s my hobby, but I get paid to do it. It’s every web geek’s dream. It’s just a surprise that I ended up here, and now that I’m stuck on a couch recovering from surgery and dealing with having cancer, it let’s my mind run away with all sorts of thoughts. I can’t sit at my computer, so I can’t work on websites, so my mind is no longer reined in.

It has me thinking along all the tangents of all the things I haven’t done. I don’t mean things like “holy crap I might die soon I need to bungy jump and travel the world and buy a red convertible”… I’ve never been like that. My goals in life are to leave a mark. I don’t want to spend my life doing stuff for me, I want to spend it creating stuff, building stuff, and leaving an empire (of sorts) for my wife and family.

I want to build websites for charity or non-profits, and convince well-off people to fund it all. It would let talented developers and designers donate their skills to help a good cause, and feel good about themselves, while saving them the efforts of finding the charities, dealing with them, etc. Most of these charities could actually benefit from having a website to get their cause out there, but they can’t afford it. Meanwhile companies that arguably don’t even need a site apart from a basic vanity domain, spend tens of thousands on fancy web presences.

I want to have my own t-shirt brand, with bold funky vector designs that guys like me would actually wear. Not just more generic boring shit with a brand name across the front. I’ve already got the shirt designs, the brand, and the website in my head.

I want to open a family business that would be a funky 50s-inspired cafe/diner with reliably good food that isn’t pretentious crap. It’d have awesome burgers, fresh salads, delicious cakes, and killer shakes. It’d also have motorbike parking at the door, cheap but good coffee, and be family friendly. It’d be something my wife, brother, and mum could continue on after I’m gone. It would be called Ernie’s Diner (named after my pops) and it would be awesome.

I want to collect dumped furniture and rejuvenate it using other collected odds and ends. I want to give new life to other peoples discarded trash. I’ve always found furniture to be beautiful, and working with wood has been an on/off hobby since I was a kid. I think it’s a shame so many people throw out old wood furniture due to a small crack or broken leg, replacing a hand-made piece of history, with something from IKEA. I’d spend my weekends salvaging furniture and selling it or giving it to charities.

I want to buy a chunk of land somewhere in the Blue Mountains or Tasmania and build a sustainable house out of shipping containers, subterranean for insulation and reduced impact. I want to use all the geek skills I’ve got to use technology to help create a comfortable yet eco-friendly living space. I’ve already got plans in my head that cover pretty much everything from drainage to air circulation, room layouts to flood protection.. and even where I’d park my bike.

Speaking of bikes, I want to buy an old Suzuki GS1000 and use an in-hub electric motor to build a fully-electric cafe racer. I’ve brainstormed every aspect from wiring to weight distribution, battery brands to digital dash, and even the final paint job. I would then publish the finished plans so people can build their own.

This might sound like an eclectic and confusing mix of ideas/ventures, but these are the things I think about, and these are ideas I think would work and would make me happy to see happen.

There’s so many things I want to do that I think I’d kick ass at. All these things were stuff I had on my “one day” list. The above few things barely scrape the surface.

The hardest part about facing mortality statistics and all this cancer-related crap isn’t “oh no I might die, woe is me”, it’s actually “oh no there’s so much I need to do before I go, and now I’ve got less time”.

A picture says a thousand words, so i’ve attached an essay below.

Explanation: I’m taking a photo every day, of my view. This is the last 3 days (edit: 6 now. I added more. The new ones are from my mums house). Considering the surgery took a nice chunk out of my left quad muscle and the other part of the surgery being close to my groin, it’s left me pretty much completely immobile apart from a daily trip to the bathroom using an office chair as a wheelchair. Surprisingly, I haven’t been that bored. The wonders of Foxtel & wireless internet means i’ve been trying to get a lot of writing done. Mostly brainstorming and note-taking though, nothing that’s really worth sharing yet.