A public service announcement.

I'm not sure at which point this blog suddenly became about hang gliding instead of cancer.
I know which one I prefer though.

28 weeks later.

It's been a while.

5 months on and apart from slightly sparser facial hair and the occasional haunted look in my eyes I'm no worse for wear than I was before chemo.

Below is a film a made from cobbled together footage from my hang gliding course in January. I would like to point out that since this film was made I have acquired a cooler helmet, harness and hang glider.

Life is good!

Cycle four and the results

It's fair to say I've been a bit slack on the upkeep of this blog lately.
But I've decided it's time to finish this thing, tie up all the loose ends and extricate myself from the tangled web that is cyberspace.

I finished my fourth and final cycle of chemotherapy at the start of August, the last lot really knocked me around and I'm not sure I'll ever be able to watch an Olympic event again without a faint urge to purge. Probably no great loss.

That last cycle and the subsequent recovery are a bit of a blur, I ate boxes of icy poles, watched a shitload of Olympic sports I'd never heard of contested by countries I doubt I could locate on SBS and lay around with a cold facewasher on my forehead wondering if I looked as much like Alexander Litvinenko as I imagined.

I had my first post chemo CT scan a few weeks later, by this time I was feeling better. So much so that the day before the scan I had a couple of friends round for some beers in the sun. The sun went down, the beers continued and we had a damn good time until the next morning when I woke up with a raging thirst and a bit of a headache only to realise I was already within 6 hour no food or drink pre scan window.
I doubt the nurse would have given me so much sympathy after I threw up the contrast solution if she'd known I'd been quaffing stubbies the night before.

After the big reduction in the previous scan I was pretty optimistic about these results expecting to hear that not only had the tumour vanished but I'd also won the oncology department meat raffle or something so I was a bit put out to find out the tumour hadn't really shrunk at all since the last scan and that because they couldn't give me anymore of that type of chemo I'd probably need a fair bit of radiotherapy.

I doubt my friends know how much of what they've done for me in the last few months has made this whole experience bearable but that evening a friend cooked me Mexican and we spent the night talking about anything but cancer.

The next step is another PET scan which differs from a CT scan in that it can see inside the tumour and determine how much is still living tissue.

An old friend (to protect the identities of the innocent and given that she chucked a sickie from work to take me to the Austin hospital for the scan we'll refer to her as Ms A) picks me up from the train station and we head back to her place for a bit of pre scan Mario Kart. After the last PET scan experience which involved a lot of Enya I've taken my own CD down, I'm a little miffed to open the case and discover not "The outernational sound" by Thievery corporation but "The sinister urge" by Rob Zombie, a good album but not necessarily the sort of thing you want to listen to in a tube.

After being shot up with the radioactive sugar and given a bit of a lie down to allow it to disseminate they position me in the machine. "Oh, what sort of music do you like?" asks the radiologist "Moby right?", I know she's made the assumption because I'm a bald man with glasses and as much as I'd like to correct the stereotype I do actually like Moby, it seems like the right kind of tube atmosphere.

The results for the PET scan came back yesterday and I headed in bracing myself to hear I was going to spend the summer radioactive.

The Oncologist is quite animated, there's definitely a vibe here, either I've got some new type of cancer that's of particular interest to him or something's in the air.
"Has anyone spoken to you about these results?" he asks, I shake my head
"well it's really good news!" he says "based on these results you don't need any further treatment, what's left of the tumour is dead"

In my experience with cancer there's not many of these moments, not "you're cured" moments but something for nothing moments. Every gain usually has it's price.

We spend the rest of the consultation discussing the good news, follow up observation and a strange brown pigmentation that appeared on one of my legs during the chemo. Then I leave the hospital not sure whether I'm going to laugh or to cry and wondering how one celebrates in Ballarat on a weekday lunchtime.

That was yesterday.

It's a strange thing but now to look back I wouldn't change the way things happened, if I was given the option for the Ecuadorian doctor's diagnosis to have been correct I wouldn't take it. Physically the chemo has taken it's toll on my body and given the scar on my stomach I'll never be a swimsuit model but... well maybe I'll bore you with it some other time.

It's going to be a good Summer.

Cycle three: What's chemotherapy like then?

Cycle three was going to be a challenge.
Not just in the way that spending five days being intravenously fed toxic chemicals is always going to be a bit of a challenge. But in trying to come up with some new angle afterwards to blog about.

I'm past the discovery stage but not quite at the recovery stage, too much of my hair has fallen out for people to assume it's anything other than a lifestyle choice and my wanting to keep this blog on topic and out of the rest of my life has left me with bugger all to write about.
If I'd been touched inappropriately by a doctor or vomited on myself in a public place we might have had something. Unfortunately things rarely turn out the way you hope.

So instead of another blow by blow account of the past week I thought I'd have a go at describing the actual chemo experience in more detail than I had previously... I know I'm clutching at straws and if this blog was a sitcom then this post would be one of those godawful clip episodes with bits of previous shows shabbily cobbled together but hey, it's not like you people are paying me.

I'd like to start by pointing out that this is not about THE chemo experience but only my chemo experience, I can't tell you what chemotherapy is like for your friend or relative and if you're having/had chemotherapy yourself I'm not trying to tell you how to suck eggs. No offense is basically what I'm saying here.

Interestingly (I think) chemotherapy has it's origins on the battlefields of world war one, although back then it was called mustard gas and rather than being medicinal in nature it was used to kill otherwise healthy people on mass. Mustard gas victims were discovered to have died because among other things their bone marrow was destroyed and so doctors began exploring the possibility of a less antisocial use for the stuff.

By the 1940's nitrogen mustard was simultaneously being used as the first chemotherapy drug to treat lymphoma and being stockpiled as a weapon. Although doctors experienced limited success and world warring governments came to the agreement that shooting was in but gassing wasn't really on, the basis of modern cancer treatment was formed.

Then in 1965 a bloke called Barnett Rosenberg who while trying to sort out whether bacteria could grow in electric fields or not accidentally killed all of his bacteria by using platinum as a conductor. Barny being a far more intelligent person than myself somehow saw the potential for this discovery in the treatment of cancer and without cisplatin, a chemotherapy drug derived from platinum chances are I'd be knackered.

It's when you suddenly find yourself on the receiving end of this collective product of countless intelligent dedicated people that you suddenly become very glad not everyone spent their education carving comical penises into their school desks with compasses and smoking ciggies behind the shelter shed like you did.

So what is it like then? Chemotherapy.

Well, it's a bit like a hangover I suppose. Obviously not your garden variety day to day couple of aspirins, bottle of gatorade and a lie down you're right as rain hangover. But that hangover you have the morning after you got into a white Russian shout with those Croatian backpackers and then when the pub closed you all piled back to your place and drank that bottle of creme de menthe that had been sitting on top of the fridge for as long as you could remember before eating an entire sponge cake even though you probably shouldn't have because the cream smelt a bit funny. You know the one, well it's a bit like that... but worse and it lasts for about a week.

Now I'm obviously not complaining given that the alternative is... well, death. It's a fairly small price to pay really.

I think though if there's one thing that stands out for me about chemo it's the taste, not only does the inside of my mouth get really sensitive but my saliva tastes of socks. Not my own socks either, which if I'm being honest when they smell I sometimes find strangely enjoyable but the socks of a stranger. As a result I find myself eating constantly to get the taste out of my mouth. This is when the orange cravings usually kick in. They actually kicked in so hard I was eating about 3kg a day for a while which is probably a bit excessive. So now when I get a craving I just drop a couple of kumquats to take the edge off.

There are a lot of other wacky side effects too including (but not limited to) heart palpitations, ringing ears, sore palms, night terrors, night sweating and the inability to think properly. The ringing in my ears is a side effect of the cisplatin and though the hearing specialist says it will probably go away afterwards as long as I don't think about it too much it is pretty intense. It actually sometimes makes me wince, usually at inappropriate times (like while I'm looking at some proud new parent's baby photos).

The whole experience would suck a whole lot more if it weren't for my parents who pander to my every craving, empty my sick bucket with a smile, put up with my moodiness and even change the channels for me since my remote control stopped working. It's a bit like the exorcist in that their child has suddenly become a bed ridden, projectile vomiting grouch although as yet I'm not whacking off with a crucifix, not even during the all excitement of world youth day.
Was that too much? I'm really sorry, like I said bad taste is one of the side effects.

The upside to all this is that once I start coming good I feel really good, sort of euphoric. Maybe it's just relative or my brain self medicating with a bit of dopamine, but either way it's quite a rush. So I'll end this post on a high, maybe have a quick orange and hit the sack. I'm supposed to be starting Uni this week although I don't know which day I have to go, where I have to go to or what I might need when I get there... I'll just take a pencil I suppose. No compasses though, this time it's serious!

Jez

Sex and the CT (scan)

Well there wasn't actually any sex, or if there was it wasn't happening to me. So I'm sorry if I piqued your interest with the promise of a saucy romp but I was stuck for a title... if on the other hand it was the CT scan that put the hook in you then you're in the right place.

I had the CT scan on Friday to determine the response of the tumour to the chemotherapy, the body count if you will to go back to the war on tumour analogy.

If you haven't had a go at a CT scan before the way it generally works is you begin by drinking a contrast solution. Normally this is a fairly clear liquid that tastes a bit like the stuff the dentist makes you rinse with. However at the Base (Public hospital in Ballarat for those of you not from around here) they favour a viscous, white, occasionally lumpy solution, 300 mls of it to be precise. The idea is to consume it over about an hour by knocking back a glassful every 10 minutes.

I'm up to my 4th glass when my throat decides we've had enough. It closes up every time I take a sip, normally I can get it down fairly easily but the chemo queasiness is adding an extra dimension today. I try mind over matter making chocolate milkshake my mantra and I'm halfway through when my esophagus realises it's been tricked and spasms violently. Some of it comes out my nose while I the rest of it runs down my chin. I believe this is what's known in the adult film industry as the money shot.

I'm wiping my face with my sleeve (the only other options being a tattered copy of Time or the carpet) when an older couple join me in the waiting room. We get chatting and they turn out to be really nice, the kind of people I might even hang out with except it would be quite weird. She's just been diagnosed with some kind of cancer (I forget which) and so we chat about nausea, hair loss and all sorts of groovy things stopping only to raise our glasses and chug.

All too soon I'm summoned to put on a gown, for some reason there's an almost full length mirror in the change room. I take a moment to appraise my look, bald head, backless gown, odd socks and know that if I saw me coming the other way down the hall I'd avoid eye contact.

The CT scanner is a donut shaped machine with a sort of bed that moves in and out. I hop on with an air of nonchalance I don't really feel and make small talk with the nurse while she sticks a needle into my arm. She injects a syringe of saline into the needle to make sure she's hit the vein and explains that if they accidentally inject the tracer dye into the arm and not the vein "it really hurts and for a long time".

Satisfied she's in the right spot she starts the tracer dye running, tells me to lie still and leaves. It's an odd sensation as the tracer runs through your system, you taste it in the back of your throat first then a warm flush runs through your body. It sort of feels like you've wet yourself and it takes a fair bit of restraint to lie still and not check.
The inside of the donut then starts spinning, the bed goes in, "hold your breath", the bed moves slowly out and "breathe away". Then it's out with the needle, off the bed, back on with the trousers and the job's done.

I spend Saturday night playing poker and drinking beer with the fellas, nothing takes you're mind off things like gambling and alcohol I always say. Sunday I'm a bit seedy and after lunching with friends I spend the rest of the day in bed with a book about Nazis my Grandpa got for me at trash and treasure.

Monday starts with a blood test and then I head up to oncology to get the results of the scan. I've brought the Nazi book with me only realising later that the combination of the swastika on the back and my bald head might lead some people to leap to conclusions...

Then I get the result, a good one. The tumour is quite a lot smaller than it was prior to treatment. Originally measuring 3.5 x 2.3 cm it's now down to 2.2 x 0.8 cm, I read through the examination report myself, the words "Reduction in left external iliac lymph nodal mass" have never sounded so sweet!

I was also supposed to have a chemo session Monday but when my blood test results show my white cells are too low I end up getting Monday and Tuesday off. I know a low white cell count is not actually a good thing and I'll have to make the days up later but hey I'm up for the days off! I'm sort of hoping they're still too low tomorrow because I'm supposed to go and enrol for uni.

So that's the story so far, I'm really pleased with the results but there's still more work to be done and I'll hold off on the celebrations till it's finished. Who knows maybe I'll celebrate on an aircraft carrier in front of a large "Mission accomplished" banner or maybe I'll let the war on tumour analogy go and celebrate with my friends and family. We'll see.

Jez

Do cancer patients get better service? and other random words.

I was having coffee with a friend the other day who reckoned we were getting much better service than normal. I suppose the assumption is I might not have long and as such should not be kept waiting for a cappuccino as I'm no doubt keen to get back to swimming with dolphins, bungee jumping and other activities favoured by the terminally ill. Or perhaps they just wanted to get me out quick before I ruined everybody else's good time... it's hard to say.

Strangers are definitely being much friendlier to me though. While stocking up on Sony games the other day this bloke with whom I'd never spoken beyond that required to complete a transaction goes to great lengths to get me the cheapest deal possible while we chat about upcoming games.
"Call of duty 5 is coming out in November!" He says keenly and then I see the fear ripple across his face so just in case I'm not expected to make it to he adds "probably won't be that good".

One thing I'm not sure about yet and since Ballarat doesn't really have any public transport it hasn't come up is where I now rank in terms of seating priority. I usually give my seat up for the elderly, pregnant or injured but now I'm not sure, does chemotherapy beat pregnancy? How injured is worse than cancer? Will standing for the old people now seem a bit patronising?
It's another of the social scenarios I dread but not quite as much as the casual "How are ya?"

There are 3 "How are ya?"s I encounter these days, the first is the person who knows I know they know and it means just that. The second is from the person who knows I don't know they know and it's a clumsy attempt to get me to spill while the third is from the person who just doesn't know. The dilemma comes when dealing with the second and third type of people, I have 2 options , lie and then be prepared to keep lying or come off as an unemployed layabout loser with alopecia sponging off his parents or drop the C word (in this case cancer) and hope for the best.

It's just that once you say you've got cancer most people respond in one of two ways, either they tell you about someone they know who has/had cancer and is now happy and healthy/dead or they tell you about a cure they read about somewhere involving magnets/semi precious stones/goat placenta. Not that there's anything wrong with either of these responses and I'm not suggesting I'd have known what to say either.

I hope after this post people aren't too terrified to talk to me, I probably shouldn't really blog tonight, I'm a bit tense. I have the scan tomorrow to measure the response to the chemo although I won't get the results till Monday. I wasn't nervous at all until today but I think it's just hit me that tomorrow is a big day with big consequences.

If all goes well then it's a full week of treatment next week then 2 more weeks off and then a final full week after that. I'm trying not to focus on the finish line too much at the moment just in case the line moves before I get there.

In lighter news I got into the uni course I applied for (international studies) and just got the subject list which looks really interesting, I start mid year so it's been good to have something else to focus on. I'm really looking forward to getting underway and being challenged again.

Anyway that's all for now, I'm too tired to proof read this post so I'll just apologise here for any unnecessary profanity/grammatical errors etc.

Jez

Cycle two - To beanie or not to beanie.

That is the question.

I wake up one morning with a mouthful of hair, it's a simultaneous feeling of relief and disappointment to discover it's my own.

Deciding the time has finally arrived I get Mum to fire up the clippers and sort me out with a proper cancer haircut. Although a number 1 all over is not the ideal haircut with which to face a Ballarat Winter I do now feel less self conscious using my healthcare card.

Thusly I've decided I need some kind of a hat, not only to protect my head from chills and ultra violet radiation but to protect society at large from awkwardness. The average punter going about his business has no need to reminded of his own fragile mortality by my patchy hair do.

I haven't taken the hat choice lightly though, in my opinion one's hat says a lot about a person at the best of times. So I resolve to choose carefully.

However, when I rifle through the mounds of brochures in the oncology department I discover they're all aimed at women. The ladies seem to have the whole industry stitched up. They've got scarves, bucket hats, turbans, something called the "Lady Margaret evening surprise"...
But for the blokes, beanies or bandannas.
"Beanies? Is that it?"
"I can stick a little plastic propeller on top if you like but..."
and bandannas? Unless you happen to be a pirate on a ship with a very strict dress code there's no reason to knot a hankie around your head.

So it looks like I'll go for the beanie, Mum managed to find a few around the house but I think they all make me look like I have special needs so unless somebody out there wants to knit me a stylish one I'll probably go on a beanie purchasing mission this weekend.

I finished another full week of chemo on Friday and if everything works as it should then I'm at the halfway point. I would have been more than halfway but after the first cycle I had a second lung function test and the Oncologist decided to discontinue the Bleomycin. So instead of having two more cycles of BEP* it's 3 more cycles of just the EP. It's not so bad as it only equates to one day extra in the chair overall.

This week was both harder and easier than the first week, there is a cumulative effect and physically I felt worse this time but at least I knew it'd pass. During my first cycle I assumed that I was going to feel wretched for the entire treatment, now I know that by about Wednesday the following week I'll be on my feet again and can start getting in shape for the next round. The turning point this week was probably when Grandma turned up with a bag of muffins and a book about dogs at war (she knows what I like).

One side effect I've noticed during this cycle is I've become very emotionally suggestive, I am putty in the hands of television. I'm not feeling particularly emotional otherwise but ad breaks have become moody roller coaster rides. It's one thing to be moved by world vision, it's something else to mist up over a slightly melancholy dog on an ad for sheep dip (it's melancholy because the sheep dip has replaced it as man's best friend if you're not tuned in to Ballarat TV).

I'm scheduled for a CT scan before the next cycle. I don't think I've ever looked forward to being shot up with tracer dye so much before in all my life. It'll be a massive psychological boost to know that it's working. I've visualised the lump shrinking a couple of times, not that I'm really into that sort of thing but it can't hurt and there's bugger all on television during the day.

So that's about where I am at the moment, bald, spotty and desperate for an orange but feeling fairly good about everything. Feel free to ask any questions by the way, I can't guarantee I won't misinform you wildly but it passes the time!

So until next time, look after yourselves, try to avoid bandannas and don't worry about things too much, it's probably not all that bad really.

Jez




Bald and spotty but not quite pulling off moody.


* BEP = Bleomycin, etoposide & cisplatin which is actually platinum hence the P.