Nov 18 - Jaundice pays a visit

Well I didn't think I'd have an update so soon! It never just rains...

So anyway, after cruising last week, this weekend I noticed my urine was very dark, like a well aged cognac, or Metaxa brandy, and I naturally assumed I was too dry. Except drinking more water didn't seem to make any difference. What else could it be? 

Now I do urine samples as part of my trial, which always have a trace of blood, (I have a kidney stone on CT and am taking blood thinning medication, so we have always assumed the stone jiggling around was causing the micro-bleeding) so maybe it was just more blood leaking causing the darkness? 

But then I was also itchy the last couple days, all over, including my palms. That suggests liver...

Ok, so our suspects in this mystery are:

Dehydration - probably ruled out

Blood in the urine - has form

Liver damage - new kid on the block

So, Sherlock Holmes attire on, I trundled off to the ever suffering GP today, with the above story. "I need your help in solving a mystery" I said. (I really did) A urine dipstick was all that was required. Culprit nailed! Bilirubin. With a tiny trace of blood. He peers into my eyes..." you know, your eyes do look a bit yellow, I think you're jaundiced" But how? I feel no different, except itchy, and my serum bilirubin last week was 6 (bilirubin determines the yellow colour and is normally below about 25 from memory) This makes no sense, how did the liver go off so quickly, and I didn't even notice? Need more blood tests to figure it out.

Naturally as soon as I got home I ran to the mirror to look at my eyes. Yep, there it was. Clear as day. The whites of my eyes had gone yellow, like very old paper left in the sun, especially around the periphery.

Back to hospital. Bloods done. Bilirubin 84, liver functions triple last week's results (that's bad) consistent with obstruction, somewhere... explains the appearance of jaundice like an unwelcome houseguest!

There was no indication of blockage on last week's CT, so MRI booked for later this week, at 6.30 am, mind you, to figure this out. I assume one of the tumours is squashing a liver duct somewhere, not a big surprise with the biggest of the twenty blobs over 3cm wide.

Stay tuned, I will continue this entry once I know the result and the plan...

 

Update - Friday 21 Nov

Had a chat with the oncologist today. The bilirubin has gone down a bit (can someone send the memo to my itch please?) Liver function enzymes are slightly worse. MRI doesn't show anything acute, the bile duct is only marginally dilated. There have been background discussions with a gastroenterologist regarding stenting, and the decision is that because the bilirubin is falling, and the duct not dilated, a wait and see approach will be adopted. Bloods again next week for review purposes 

Yeah, I know I'm going to need a stent at some stage, but. hey, I'll go along with this, for now.

Anyway, life goes on. I spent today's sunny morning mulching and spreading manure in the garden. Normal things. Important things. Fuck cancer.

 

 

Nov 15 - cruising for a bruising

The past week has been interesting.

Monday I had my first ever blood transfusion, only one unit. I was really quite nervous about this, having seen reactions in the past. Naturally I assumed I would have one! Things didn't quite go as planned, I rocked up 8.30 as instructed, only to discover my cross match would have to be done all over again, the supposed one hour wait turned into four, but, you know, I'm quite used to waiting around in hospital these days...sad really, didn't bat an eyelid. Besides, I had a surprise visitor turn up, which both brightened the day and made the time pass quicker!

I have to say, it was quite surreal watching it go in, thick and red in the drip line instead of the clear fluid of prior drips. I was sort of fascinated.

Pleased to say, I didn't have a reaction, and my hemoglobin rose from 91 to 98, still nowhere near the 135 average for a male, but let's take what victories we can get...

Tuesday I had my meeting with the oncologist, the sum of the six monitored tumours has "only" grown by 14% since beginning this treatment 6 months ago. Again, you take what victories you can... While that remains under 20% I can continue this trial.

And if I exceed those parameters? Then what? Good question. It's in the lap of the Gods. Maybe there will be another trial to jump to, but more likely, it will be the start of the downhill run to palliative care and a plot in Springvale...

Actually I was more excited about the second finding, that for the first time in months, I had lost no weight. That I consider a major victory. Thank you to full cream ice cream, milkshakes with a scoop of sustagen and a dollop of peanut butter, yoghurts and protein drinks. Food remains problematic, I have a lot of trouble. I can sort of manage rice and pasta in small portions, I can't do bread anymore, I certainly can't eat meat, although I can get a few mouthfuls of fish before gagging. I've found the stronger the flavour, the more palatable, so I have been trying rice or stir fry with Asian sauces, especially sweet chilli...

Alas, it may be short lived. The last couple of days I have been feeling queasy all day. I dread eating and my intake is down. It's weird, forcing yourself to eat, in the hope you don't throw it all up again. I am considering starting that Maxolon after all, I'll just see how it goes over the next day or two. Oh, the bucket is next to my bed again...I can assure you it's not just ornamental!

Wednesday, back to see the respiratory physician. Hospital three days in a row. Man, I'm living the life! This was about that cough when I talk. (Unrelated to the cancer, because I needed something else to torment me, and let's not mention the back pain. Enough digression) Anyway, it's mostly better, there was no further talk of bronchoscopy and I left the office a happy camper.

Apart from that, it's one day at a time, I did plant tomatoes, why not? (Mind you, the weather isn't helping) I'll worry about pests and fruit fly later... pottering about the garden is quite relaxing. I mean, I don't do much, pull the odd weed, a bit of pruning, a bit of repotting, time passes...

Oct 27 what now?

I am going to keep this one nice and short

Not a lot to report, at the last meeting I had only lost 1.5 kg, so that was good (mind you 27kg for the year!) On the down side, my Hemoglobin is only 91 and if below 90 I no longer qualify for treatment, so they want me to have a blood transfusion in the next week or so. I really don't want this but what choice do I actually have? Of course I expect to have a rare reaction. Doctor's curse....And with my luck, the next scan will show enough tumour growth to pitch me off the trial anyway so it will be all for nothing. Optimistic bastard aren't I?

The oncologist was also agreeable to support me if I decide to go down the voluntary assisted dying pathway. Which I suppose is nice, I'm not ready for it just yet, but I asked anyway. Plus, it raises a whole lot of religious and ethical issues I need to sort out. Mind you, in the next breath I was offered morphine for my pain that I am getting along my right side, especially coughing or breathing deeply. Well, after my codeine experience you can guess my response. No flipping way. The oncologist wondered why I was snarling...For the record, I ditched the codeine and going to the toilet no longer ends in screaming. So life is good

Time to plant tomatoes

yes I know this aint tomatoes - it's late blooming azaleas 

Oct 03 - Anniversary, two years

Sunday after Grand Final Day, 2023, Acute Pancreatitis

Looking back, that was the first symptom, all the scans and biopsies stem from that episode, so I use that as my starting date, despite not receiving a formal diagnosis until July 2024, after the fucking thing metastasized and the penny dropped...

Monday this week I had my review scan, Tuesday my oncology review and infusion. There is little change in most of the metastases, except for the coeliac lymph nodes, which are just slowly growing, week by week. Shehara, the oncologist says this isnt unusual, nodes often tend to be less responsive, but admitted there simply isnt any data on my type of tumour, I happen to be the second case she's seen in 5 years, it's that rare. 😔

We now have a dilemma. There is some concern about these nodes, and we discussed whether I should have top-up radiotherapy (as the side effects from the nodes could be nerve pain, stomach not emptying, vomiting, worsening appetite - it all sounds a bit too familiar) Anyway, the problem is, if I have radiotherapy, I might have to come off the trial because protocols dont give us wiggle room. Anyway, she's going to speak with the trial co-ordinators to see what our options are. For the moment, the decision was to continue as we are going. I agree with this because as far as I can tell, this treatment is keeping everything else under control. Sort of.

Another disappointing aspect of Tuesday's consult is that I continue to lose weight, despite the pancreatic enzymes. I have lost 10kg since the end of May, when I got my first dose, which means they had to decrease the dose of the infusion. Given what I describe above, this worries me in case it is now less effective. Catch 22.

A lot to mull over the next few weeks...

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

I've had a really bad day today. What motivated me to write, but be warned, it's unpleasant. If you dont want awful gross details about body functions, don't read on. I mean it. Jump to below the next dotted line

It's definitely TMI, but this is my reality...

Those who have spoken to me recently are aware of the cough I get when I talk, and the ENT feels it is nerve overstimulation causing it. So I have been on codeine syrup 5 ml twice a day for the last 10 days. Codeine causes constipation, so I have been taking laxatives as well. (Seriously I have 6 different types of laxative at home, I could start a chemist shop) Anyway, I already dread going to the toilet, since I'm barely eating any solids, so it's hard to get anything out anyway and it hurts far more than it should. I've been practicing the giving birth method of breathe /push/scream...

So, this morning I felt the need to go, and it was there, but I couldn't get it out. After a while I calmed down and gave up.  A little bit later, I needed to go again, this time I put some vaseline in the region, to help lubricate, but again, I couldnt get anything to come out. Settled, walked round a bit, felt the need to go again. This time I put a glove on, and some KY jelly. I managed to pick a couple of pieces off the turd that was there, but the main bulk stubbornly refused to budge. I started having visions of needing to go to hospital for disimpaction, an option I just couldn't face after only 48 hours of not passing! Anyway, I slowly settled everything down, cleaned up, walked around a bit, till the urge came back. I was determined by now, gloved up, KY applied, push, dig some shit out, push more, dig more out, till I eventually pushed it all out. There I am on the toilet seat, bawling my eyes out, partly because of pain, partly relief, but mostly humiliation. Humiliation at what I had just done, the indignity, the inhumanity, the disgust. Just crying. 90 disgusting minutes to pass a turd....

You know what? Fuck the codeine. I'll stick with the cough thanks.

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

But wait, there's more...that was just the morning. Mum rings me to go over for lunch, she's made spinach-rice (spanakorizo) which I thought I could eat. I wander over, the morning forgotten. Sure enough, it was beautiful, but I could only manage one quarter portion. So we decided lets try a cheese toastie so at least it can be a meal. No sooner had I consumed the toastie, and a glass of water, I vomited. It was so sudden I didn't have time even to get up, luckily I got most of it in the plate, but still, the dinner table didn't look great. I managed to get to the sink and well, brought up the rest of the day's takings....not great. I can't describe the look on my poor mum's face...

So, this is my life now. It's crap. 18 months ago I was working, consulting, problem solving, advocating. Happy at work. Now I'm spewing willy nilly and picking stuff out of my own ass, too weak to do anything.

I seriously don't know how much more of this I can take. I'm getting close to the end of my tether.

Yes I am trying to be practical. (eg play around with the medication to address the constipation) Yes I'm aware of my tendency to histrionics. But this is just draining, and things are happening more and more frequently. It's not just that it makes me feel low, it's the added humiliation, the indignity of stuff like this. Knowing that soon enough I'm going to need nursing care, that strangers are going to see me in this state. I just don't know how I'm going to manage that.

Sep 13 - precipice

It troubles me to write that I've lost 6kg over the last 6 weeks. That trajectory isn't great...I mean my pants are falling off. I'm going to run out of belt notches soon. I don't bend over in public, in case of plumber's crack, and worse, I am forever hitching my pants up at the shops because I am mortified they are simply going to slide off down to my ankles. Hooray for elastic banded tracksuit pants (but I aint going to the shops looking like a bogun, sorry but no) This simply can't continue!

Hand in hand with the weight loss is fatigue. I can barely do anything. Just today, at the supermarket, after a few aisles, all I wanted to do was have a little lie down in the sauce aisle. Like a hobo. It was only my fear of being arrested that kept me going till I got to the dairy section...

So, on Tuesday I had my usual oncology review, followed by my infusion. We had a discussion about what we could do to put the brakes on. I suggested a lethal injection, she wasn't having a bar of that, instead offered something a wee bit more practical - Creon (pancreatic enzymes) 

(Mind you, why no one had suggested that before, given that half my pancreas is tumour and the other half wasted away and non functional, and I was obviously showing symptoms of malnutrition, albumin 28, hemoglobin 98 (yep, both quite bad) Anyway I decided not to point this out, better to move along)

I wanted to wait a few days before writing to see if the Creon helps, it's hard to tell. Maybe?

The issue is complicated because of lack of appetite, like I can't recall feeling hungry for weeks and weeks. I'm just not interested. And many things I can't go near anymore. Like meat or chicken or continental cheeses. (So much for protein huh?) I can occasionally manage plastic cheese on a cracker, and feel proud of myself for doing so. Hilarious. Oh, and chocolate, and biscuits. Can you believe, I have a bar of Old Gold in the cupboard, that's been there for weeks. It's a travesty. Same with chocolate ripple biscuits, untouched for weeks, I can't even dunk them in the Sustagen...

Then there's the nausea, which strikes with surgical precision. Like when I smell food, or try to cook, or think about eating (hence I tend to buy pre-prepared meals, or go to mum's for lunch) It doesn't last long, maybe 30 seconds, but enough to do the damage. And too brief to use medication.

I am going to make a dietician appointment this week, that seems like a good idea. I've had a few suggestions, such as tofu, peanut butter, that sort of thing. I seem to be able to manage stir fries and rice so the tofu seems reasonable. I just forgot to buy it this morning (moron) but I didn't forget the peanut butter. I put a bit on a spoon to see if I could tolerate it, and I could, so then I burst into tears because I could finally have some edible protein. How flipping ridiculous is that?

So this is how life is for me at the moment. I can feel myself slipping and I don't know if I can pause this or.....it's just miserable.

Spring Ranunculi

Ummm...If anyone wants to send me a recipe to try, maybe text me rather than adding as a comment to this blog, please.

Aug 25 - a quick post about sustenance

 

This stuff is disgusting!

I had a dilemma at the pharmacy, chocolate or coffee (1st world problems right there)

As you can see, I went for coffee. Its still disgusting. Imagine the weakest, sickly sweetest, blandest Nescafe you've ever had, then dilute it some more. The only, and I mean the only, way I can make this stuff remotely palatable is to add a shot of espresso. Or two.

But I did make a concession - I'm using decaffeinated to make the espresso.

I am forced to consume this.... abomination... because I can't manage more than one meal a day, and many days not even that. So, I have to add this, this, whatever this is.

I have to admit, it's filling. I feel full afterwards. I can feel it travelling through my intestines. Bloating and gas are par for the course these days (don't sit in a car with me if you value your olfactory system) At least it doesn't give me constipation, actually it don't look all that different on the way out than it did on the way in. Sorry about that. (Not sorry)

So this is my cuisine now. Milo in the morning. Soup or steamed vegetables for lunch. Sustagen in the late afternoon. Maybe some crackers in the evening. And jellybeans. Ginger beer cordial for fluids, to help with the nausea. It's not great, but its keeping my energy levels manageable. I don't know about my weight; I don't dare check. It can wait till my next hospital visit.

 

Aug 19 - reality check

Kniphofia, aka Red Hot Poker, tough South African native so does well in our climate. Have a wild guess what I'd like to shove a red hot poker up...

Today I cried again. I managed to restrain myself in the oncologist's office, but I kept having brief moments up in the infusion centre. (Under control though, I turned away so the nurses couldn't see while they attended other patients, and had wiped myself dry by the time they got to me) 

So, what prompted all this?

Let's go through the facts:

Yesterday's scan showed little change. The primary maybe a little smaller but the secondaries either the same or marginally bigger. Overall a 9% rise in tumor measurements, compared to a 14% fall last scan (so technically I am still ahead you big baby) But my blood tests are all worse, more anemic, liver markers in the hundreds and so on

Of most concern is losing 4 kg over the last 3 weeks due to loss of appetite. Here's a new definition of see-food diet: you see food, and walk away... And the fatigue. And the nausea. And the fevers. And the pains. And the drama queen basking in her moment of glory...

Now I was hoping it was those fuckers just releasing toxins as they fight the chemo, or side effects of the chemo itself, but the oncologist felt it was more likely neurobiochemical changes induced by the cancers, especially appetite loss and "cancer fever" What they call "burden of disease" A much kinder way of saying it than "you're losing the battle" which is what it means. So, I stepped on the landmine I placed in front of my oncologist, and we discussed my future. 

The devastation of Mordor. 

Chances are, I'll hit a clinical "tipping point" in 3-6 months. Chances are, by the time this treatment is abandoned, I'll be too unwell for further trials. At which point I will be looking at palliative care, eventually hospice, maybe by early next year. She looked so sad, telling me this, face downcast, voice lowered, hands clasped in her lap. And what did I notice? Oh look, I have the same carved clay scroll statue of the Hippocratic Oath that you have on your shelf...

So, quite confronting, and my rationalisation for all the waterworks 

I am such a fuckwit. I mean what did I expect? That there was ever going to be any other way this would go. Time to come away from la la land and just get on with it. Step by step, day by day. Grow a set. Push back a little. Stop feeling sorry for yourself.

Aug 05 - a day in the life of

I think I've settled into a pattern, hospital infusion, blood tests, pain episodes, constant fatigue, poor appetite, its all become rather mundane and routine... 

Odd thing though, for the last few weeks I've had this cough, those of you who've spoken to me on the phone will recall it's mainly when I talk. The team thinks it's laryngeal. So yesterday off I trundled to the respiratory physician, who promptly referred me to ENT because "this isn't asthma" (I had normal chest scans as well, so it wasn't anything else either)

But then, he started talking about bronchoscopy and lavage (sticking tubes into my lungs and collecting samples via washing fluid through the bronchial tubing - basically a mini drowning) I sat there with a fake smile plastered on my face, gritting my teeth...but inside it was like No. No dude. Stop talking. 

I. am. not. having. another. invasive. medical. procedure. I'm just not.

I was upset.

I went to bed perfectly fine.

I did not wake in the same state. 

Cramps. Low abdominal cramps woke me up. I stumble to the toilet. Waves of nausea. Cramps getting worse. I wanted to curl up on the floor, but I figured I better stay on the toilet, in case something came out. The pain was enough to make me nauseated, but luckily it passed. As if nothing had happened. I went back to bed.

It's going to be a bad day...

20 minutes later, bang, I almost didnt make it to the toilet, 5 steps away. These cramps were bad. I mean, we've all had cramps but this time I felt like collapsing, which was new. The dry retching was an added bonus. In amongst all that, I managed to pass a couple of rabbit pellet droppings. WTF?

So this continued another 4-5 times every 20 minutes or so. Some rabbit droppings, some vomiting, cramps. Ho hum. I stayed in bed. After midday. 

Until.

I think the solids finished. Then the dam broke. Boy, did the dam break. Toilet bowl looked like those volcanic mud pools at Rotorua. Relief. So that explains the cramps, I was banked up with nowhere to go. Well, shit.

As a foolish medical student, I was always amused how fixated older people were on their bowels. Who's laughing now?

The afternoon has been better, no more episodes, I've drank some fluids, nothing solid today (the very thought makes me nauseated)

I'm going to bed soon, we'll see what the night holds...

Of course, as soon as I finished writing this piece, I lay down on the sofa,and promptly vomited. It's going to be a long night after all.

July 10 - reprieve?

I spent yesterday crying

Tears of relief 

Finally, something going my way

The criteria to continue this treatment was that there was required to be less than 20% growth in the target lesions. This is after only 2 treatments mind you

Here are the measurements from my scan 

 Target Lesion                                     Current (mm)                 14/05/2025 (mm)
 1. Pancreatic head                             26 x 24 x  24                        45 x 33 x 37
 2. Coeliac axis node                          25 x 21                                 29 x 21
 3. Precaval node                                27 x 17                                 27 x 17
 4. Superior segment 8 liver metastasis 23 x 17 x 20                     23 x 17 x 20
 5. Segment 7 liver metastasis             26 x 20 x 21                       26 x 22 x 21

Some have shrunk, others stable. Structure wise, they look like they're degenerating even if they haven't shrunk (according to the report)

I honestly don't know how to react, its left me a bit numb. I pinch myself. Is it real? Yesterday during my infusion I kept tearing up. Good tears. 

If all goes well, this is a 2 year trial. 

I suppose I better start looking after myself a bit better. It's hard to describe the sense of relief. Before I was just sitting around waiting to die, like what was the point? Of anything? I couldn't be bothered...

I've been handed a reprieve, maybe short, maybe not. How's I get off my fat ass and start to live again? 

Address all the issues I put on hold because...why bother? Oddly, I find myself looking forward to Christmas this year... 

July 7 - scan day

Today I'm having a scan to see if there has been any response to treatment. I find out in two days. I put this up because I am fascinated how specific this scan request is. Makes sense of course given I'm on a drug trial. I might ask what criteria they use to determine which are target lesions, out of curiosity.

I have avoided looking at the forms until today, it's pretty scary looking shit, I think would prefer not to know.

Anyway, that's all I wanted to say today. I'm heading off to hospital... 

July 02 - JINXED

Well, now I've done it

I did what we all know not to do, but do anyway. I opened my mouth. A cautionary tale

Here's how it went. 

Yesterday morning I had a cardiology appointment. "How's it going?" he asks. "I feel really good" I reply, "last few weeks the best I've felt in ages." (Apart from the nausea, but that's a given) 

He wanted me to do some bloods, so I dropped into the cancer centre office to adjust my time for the next day's assessment, so I could do both sets in one hit. It just so happened my trial coordinator walked by. "How's it going?" she asks. Same reply. "I feel really good. Those pains I was getting have completely disappeared. Been pain free for a good month. Maybe the treatment is working..."

Of course they needed an updated referral, having lost the one I had just given them, so I popped into the GP for a reprint. As I was leaving the clinic, I ran into my GP outside. "How's it going?" he asks. "I haven't felt so good for ages" I reply. We both beam big smiles.

We know what comes next don't we?

Well I swear, not 2 hours later, I start aching all round my right ribcage. I hoped it was just from coughing, but no, it stayed, all day and all night. And all day today. Just a dull toothache type pain, mild but persistent. Well, I wonder what that might be? My tumours giving me the finger...what else would it be in that location? Am I catastrophising? Is it just my histrionics? We''ll see 

It's funny, I have observed, if you have pain, and it goes away, then it comes back, it always feels worse the second time, even if it really isn't. As if the nerves desensitize and then get overstimulated. (I noticed that with the rheumatoid joint pains as well)

My review scan is next week, so I'll know for sure then. How dare I hope!

"So, you gonna get cocky are you? Here, I'll teach you...Take that sucker! Fuck.You"

 

June 17 - dose 2

Here I am again, home away from home, not quite a week after my birthday, about to have my 2nd experimental treatment.

I got my molecular genomics result today. Is anyone in the least bit surprised that I have no targetable genetic mutations? Anyone? Didn't think so. You are all familiar with my luck by now. I actually started laughing when the oncologist told me. She prescribed an antipsychotic, haloperidol, supposedly to help control nausea, but just quietly, more to control my emotional outbursts and deliriously unhinged laughter  I suspect 

We also had a discussion on philosophy in oncology. Apparently that's a thing. I have already pointed out how perspective changes, things that were important (eg, grudges, perceived wrongs, family feuds, etc) become completely irrelevant. Tolerance for bulldust becomes zero. Possessions become meaningless. It seems that this is quite common. 

I live day by day, trying to enjoy the simplicity of the sun on my skin, or the smell of rubbing lemon verbena between my fingers, or the form of camellia flowers. Of course I try ignore what the possums and the rats trash. Vermin have their place in the Universe too. 

Then there's also the feeling of curling up on the couch wrapped in a winter blanket, the taste and texture of food (when the nausea isn't playing up anyway) strolling in the park taking in the Autumn colours, wandering the aisles at Bunnings, I could go on but you get the idea.

A life free of all the garbage we overlay it with. It's so ... liberating. Acceptance of what is.

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?