May 27 - The Premiere Show

Good old 4West, I see the view hasnt changed much, just the seasons, Autumn is nice, despite the wet. I am getting better at framing the shots though huh?

On the road at last... today's the first infusion of my experimental drug trial. A chance to see those Flaming Metastases perform on stage. I am hoping it turns into a shit show, with the crowd throwing eggs and tomatoes.

The day started with a medical exam. Joy of joys, chest clear, that damn cough is laryngospasm, and ignored for the purposes of qualifying for the infusion. My bloods were fine, anaemic of course, but what oncology patient isn't? and a bit of blood in the urine, which we could also ignore being on blood thinners. 

My new trials coordinator Leyna (Lee-na) took me through all the reams of paperwork, the nurses Shelley and Georgia efficiently stuck me with cannulas & ECG dots....all good to go

So, I've just had a 90 minute infusion, with before and after bloods & ECG, I have bloods at the 1, 2 and 4 hour marks. If I have survived by this point and not totally anaemic I get to go home. Tomorrow I have more bloods and ECG, again 2 days after that, and honestly I lost track what I was supposed to do next week...I am also supposed to monitor for rash & fever over the next few days

Yeah it's pretty full on isn't it?

Assuming all goes well, the next infusion is in 3 weeks, when all the above is repeated, including  screening tests the day before

Before I get a 3rd infusion, we get a scan. If the Flaming Metastases have gone forth and multiplied, we look for another trial. I suppose that's the issue, there is no guarantee I have the receptor this molecule is seeking, so this chemo delivery system may not work at all (see post April 16) but it's the first actual treatment due to all the delays, since...... January 

Open invite, come to the concert, bring your friends, bring as many eggs and tomatoes you can carry...you have my blessing...go wild, pelt those fuckers

 

May 16 - run to the hills gypsy

Never a dull moment, and never a good explanation 

Picture this - couple of days ago is my big day - I go in to hospital to get a tonne of blood tests and a whole body CT to assess whether I qualify for the drug trial. 

Consult with the doctor - tick

Up to the oncology ward for drip insertion, blood tests, ECG - tick

wait around a few hours (may as well keep the drip in so no quickies home allowed) - oh, I dont feel so good

get to radiology, ask them to check my temperature, 38.5...WTF?

Insist on getting the scan - because I'm not backing out this late in the game

Endure that wonderful I've just pissed myself with scalding hot urine sensation from the contrast (seriously if you've never had iodine CT contrast, you are so missing out) 

Then I haul my sorry ass over to ED

"Why are you febrile?" they ask

"I don't know" I answer, truthfully and innocently...

 

I have to confess, I did have a wee temperature, 37.6, on the 2nd and 3rd days previously, but not yesterday, so I ignored it, but I didnt want to get septic like last time

So, poor things, they had to keep me overnight for observation and more tests, none of which showed a cause. Panadol worked beautifully. They were forced to let me go. 

 

It was 2.30 am when they finally got the last result through (respiratory PCR) and said "you can go now if you want" Well, I wasn't in the mood to walk home at that time of night, nor was I going to drag anyone out of bed to drive my disheveled self the measly1km home, so I held the blanket tight "I'll leave once its daylight" I offered. Fortunately they chose to succumb to my superior negotiating skills and incredible common sense. Private hospitals right?

 

Home, its now 2 days later, both fever free

How do you explain that?

Cancer fever my oncologist says

Never heard of it, I think its Hospital Allergy

---------------------------------------------

Now I did actually get some vital information

As you recall, I have been treatment free for several months, so no surprise my metastases have grown

(maybe don't compare to the previous scan, you'll wish you hadn't) 

Here is a liver slice - the black splodges on the left are the mets:

 

I have decided to rebrand them

Meet the new punk rock group "The Flaming Metastases"

(Iron Maiden meets Fleetwood Mac, if you must know)

They have tatts and rotten fangs, lots of groupies hanging round boozing and procreating, and coming soon, fireworks

Now, we are off to practice jammin' and get ourselves drugged out man....

May 3 - Federal Election Day

Today I am not writing about my cancer

Instead, I have an embarrassing confession... 

I LOVE elections

Ever since year 9 social studies, during the Fraser era, when I learnt all about social justice and "razor gangs" and got my knickers in a twist about it, I have followed every election since. And I mean articles in scrapbooks, cutting out the election pendulum, glued to the telly on election night, (have a wild guess how I'm going to spend this evening...) more recently, looking up my local booth results (go blue rinse set, you little devils, 35% Green vote 2 elections ago - double the ALP vote)

Oh, I'm rambling. Sorry about that..(I'm not really)

Anyway, I always thought I was a radical loonie left wing leftie (yeah yeah, Viva le revolution, eyeroll)

All you poor people I have berated in conversations over the years...oh my goodness

Imagine my surprise when I did the vote compass, comparing my opinions to the party lines. I am right in the bloody middle. Like almost bullseye in the middle. So much for being a loonie radical leftie. It's quite sad really. I'm...(gasp)...normal. Damn! 

 

I gotta say though, being in the seat of Kooyong due to the abolition of Higgins, finding myself for the first time ever in a marginal, hotly contested seat, it's been a revelation. In the news daily, candidates door knocking, posters on every corner, and the dirt, hell, so much dirty laundry being aired. So much bitching. This is the most enjoyable campaign ever! So this is what a marginal seat feels like. Man, I've so been missing out...

I am one of the several million who pre poll voted, and if anyone cares, I went pretty much as the chart above suggests (switch Lib & Green positions.) I mean you talk to me for more than 3 minutes you would have a pretty good idea anyway so its no big secret.

 

I am grateful to live in a country that allows free voting. I am grateful to live in an actual democracy. I am grateful to voice an opinion without being thrown in jail or mysteriously disappearing...I am grateful to meet people who completely disagree with me, and still be able to sit down have a coffee together. I am grateful to live in a town where the live footy broadcast still takes precedence over the election coverage during evening programming...

Let's not forget, there's things to legitimately feel shitty about, it's not all roses, but gee we're lucky to live in Australia. And we can always kick them out on their asses next time...

 

I am writing this well before polling closes, so I have no idea the outcome. It doesn't really matter. Things are slowly changing in this country. I am not unhappy at the idea of more independents in parliament, for the following reasons:

1) it requires compromise and negotiation - a lost art - to get legislation through

2) it makes it harder for lobbyists (I am thinking big business interests, mining groups for starters) to exert their influence - they have to buy off everyone, not just the party heavyweights!!! Freudian slip, I meant convince everyone...

3) they are more likely to represent their electors rather than party interests

4) there is likely to be a wider variety of ideas presented as solutions to problems or legislative directions, as opposed to party mantra

I'm sure there's more, but I have bored you all to tears by now. Anyone got to the end of this essay, congratulations! Where have you been all my life?