Monday, March 18, 2013

The trials of Gulliver

WARNING: This blog post is a bit of a downer. But welcome to my journey. Gotta take the bad with the good if you want the truth of it. And I've tried to throw in a few giggles, because honestly, some of this will be funny when it's not happening any more.

I write this to the glorious accompaniment of the not-so-muted roar of our generator. And I have a whole two hours or so to write in, before we get plunged into darkness and have to either fuel up again (after a week, it's getting expensive) or accept that We Have No Power.

Yes folks, like the poor trapped Gulliver captured by the tiny but vindictive Lilliput hordes, a thousand hairs entwine me. (I think I may have stolen that line from Kenneth Slessor; so sue me.)

Apparently it's not enough that I have cancer in the first place and feel like hell thanks to the treatment, after feeling Perfectly Fine when I found the damn lump.

It's not enough that I've been assailed with nightly (and more recently, daily) asthma attacks, on top of the breathlessness that accompanies a low blood count iced with a lingering chest infection. Naturally, the knock-on effect is that it's so much harder to get back to any mood-lifting exercise. This delightful turn of events is thanks to the Parramatta grass (a local weed to which I am violently allergic and which has taken over our yard) getting a real growth spurt on, in the warm weather that's followed our flooding rains. 

It's not enough that this time round, the mouth ulcer problems that Dr Mellow has asked me about Every Single Time I've seen him- only for me to laugh in a carefree fashion and say "nothing like that"- finally arrived in time for Round Five, resulting in a tongue so sore that it felt like someone had hammered nails into it, followed by a spate of ulcers so severely painful that for several days I've been talking like my mouth's full of cotton wool, or (wonder of wonders) not talking at all (stop laughing)- not to mention that I've been completely unable to eat ANYTHING.

(I do mean anything. Go on, try getting food to the back of your mouth where you can swallow it, without moving your tongue. I dare you. Tricky, isn't it? Now, try cleaning your teeth without moving your tongue. Go on, try to spit the toothpaste out...)

Tongues are much underrated pieces of equipment, I realise now.  Without a working tongue, you're effectively crippled. 

Do I sound a little jaded? A little negative? Sorry. But I'm feeling picked on now. I really am. Because this- this period of convergence of yet more bloody miserable and unexpected physical discomforts- was the moment the inverter on our solar power system chose to breathe its last. 

The inverter is the bit that translates the power of the sun, as collected by our solar panels, into something that we can use in the house for all the normal 240 volt functions that everyone takes for granted. Lights. Power points. 

Kaput. Dead. Deceased. Nailed to the perch. And nicely timed to occur when we were still flooded in, too. Well done, Fate!

What this delightful turn of events means for us (apart from deathly darkness at night) is no fridge, no freezer, no modem, no router, no frickin' anything. And best of all, no running water, and no hot water at all. Unless you turn on the ruddy noisy generator and feed it copious quantities of petrol that is. It'll go for about two and a half hours on five litres.

You try doing chemo mouth care with no running water for a week. You try keeping cheerful when your distant friends- the cheer squad online that's kept you afloat through this seven bells of hell- are suddenly unable to be contacted, except during that narrow noisy window when the generator's chewing through the petrol like a rabid locust and you must also have a shower while you have water and you must try to do your mouthwashes and you must refill all the water bottles and flush and reflush the toilet and collect water in the bathtub to flush with later, in case you need to go again in the middle of the night, and also in the basin so you can wash your hands as you stagger around with a torch in the middle of the night.... see, you're still poisonous. You can't just dart in and dart out with a Hail Mary. You have to try to do it properly.

So, sorry for the long silence. I have not been very good company lately, even if I could have kept you updated- which I really couldn't.


Whew. Got that off my chest. Righto, I'd better pick up my dummy, whack it back in my mouth and try to be a bit more positive.


The good news? I guess there's always good news, isn't there? Though some days lately I have to look mighty hard to find it.

The good news, she said, picking up tiny specks of positivity with the aid of a magnifying glass and tweezers, is that next time round when my tongue starts turning into a pincushion, I'll know what to do and I'll do it more quickly. 

Like, before I start asking the Bear for the shotgun. 

(Relax- I speak figuratively. We don't actually have a shotgun... though I will admit to having asked for one in a sarcastic sort of way at the lowest point of my troubles, much to my poor mate's distress; he was just asking if he could get me anything. And I was just answering. But yes, the pain was that bad.)  

Where was I? Oh yes- good news. On hearing of my troubles, Jimmy the paramedic-come-herbalist made me up some aloe vera water. It's a fairly simple concoction- basically, fresh aloe vera leaves drained of their bitterness before being sliced open and 'marinated' in water for some hours, then cooled in the fridge- but my goodness, did gargling it help. 

(Once I got over the agony of fridge-chilled liquid hitting my poor sensitive teeth, that is. Did I mention the teeth? Oh, never mind. Just one more hair entwining me.)

On top of that, I now have a tube of a rather weird-tasting ulcer ointment called Kenalog, which apparently relies on coating the ulcer with a layer of goop and then soaking it with cortisone. Or something. The chemist did try to explain- but I was having trouble asking the right questions, because I was talking with the same elegant clarity that I'd be sporting if I'd just downed three bottles of scotch. (Go on, you try talking without moving your tongue.) 

After applying this concoction (painfully) to my poor ravaged tongue before bedtime, as recommended, I woke the next morning feeling like my mouth was full of spakfiller and with my tongue firmly glued to my molars- but once I wrenched it free (yikes), the pain was less. I could at least suck in some yoghurt. 


Mind you, now I was up against a mental barrier. The pain had been so bad when I tried to eat that I just didn't want to try to eat anything at all- and of course, my poor stomach was now completely empty. (A bad idea during chemo.) Everything I ate, including that yoghurt, I regretted at once. Everything edible that I looked at made me feel ill. Every possible food I thought about made me feel like recycling the nothingness in my guts. Poor Ferdinand was screaming NOOOOOOOOOOO from the depths- hardly surprising, given that he'd been high and dry for days with pretty much nothing going in but sips of ruby grapefruit juice.

The Bear made me some mashed potato; I managed a little of it, but not enough to sustain life, if you know what I mean. Later he heated up some cocktail frankfurts for himself, and I managed a few bites of those out of sheer willpower- only to regret it later as severe indigestion hit.

Once Ferdinand is beached, I'm in trouble. That much is crystal clear.

Today I'm speaking a little better at least, despite another ulcer appearing on the opposite side of my poor battered tongue. But still I just don't want food. Jools suggested days ago that it might be time to bite the bullet and try the meal replacement drink we purchased before chemo started, so- given that I really don't want to get any weaker than I am- I opened the can today and gave it a burl.

Water. Six scoops of powder. Stir like crazy. Drink.

Gentle reader, imagine if you can the inviting odour of powdered milk that's been left in the sun till it's gone off, then laced with vanilla and sugar in an attempt to disguise the aforementioned off-ness. That is what 'Ensure' meal replacement smelled like to me. Here's yet another interesting fact about chemo: as your taste buds die the death, your nose makes up the difference in your senses. I now have a nose that's as finely attuned to smells as my dog's. 

Remember the days of school milk, when the milkman left the crates of little child-sized bottles out in the summer sun till they were slightly off, and then the teachers forced you to drink the damned stuff anyway? One sniff of that goddamned drink and I was transported right back there. Pass me a paper bag, and make it a sturdy one.

But I drank it anyway. I may have held my nose. Damn you, Freeloader. I don't want to fade away.

Whether I can do it again tomorrow remains to be seen. I did better with the milkshake the Bear brought me home from town, but one cannot live on milkshakes alone... can one?

Look at that beautiful shingling!
So the truth is, life in the Bungy has been pretty grim since my helicopter adventure. The new inverter, ordered days ago from Melbourne and promised last Friday, has still not appeared.

BUT look on the bright side; at least my builders are back on site. The treehouse extension, which started this whole story when I found the lump in my breast after whacking myself with the blocksplitter while stripping bark, now has two walls and all its doors in place. When I go and sit out on the verandah and start talking with the boys about what they're doing and where we're going next with it- it's one of those projects that develops as it goes, rather than being planned to the last detail before anything's done- when I get involved in that, I can forget for a while that I feel like crap. And that's good.

There's more to that than meets the eye, mind you. Somewhere in my head, I think I believe that if that treehouse doesn't get finished soon, it means I'm going to die. I know that's completely irrational. But I feel so much better now it's going forwards again. 

You see, I knew a wonderful woman up here in Lismore who was in the middle of building her dream house when breast cancer came back, after years of remission, and claimed her. 
Note the turkey backside, stage right.
They still think we're building them a
new roost.
The echoes of that are way too strong, and the stresses lately have been way too much for me to remain completely rational. I want the treehouse finished. I want to be able to use it, before- well, before life gets any more complicated, if that's what's ahead for me.

Not to say that I'm not thinking positive. But sometimes, you just get assailed by doubts and fears. Especially when things aren't going well. Especially when you get to the stage where you can't quite breathe properly, and you don't want to get out of bed, and you start to think this is what it feels like to be dying

It's cool upstairs in the treehouse. There are less bugs, and more breeze. I can be outside for a while without slathering myself in insecticide.

And that's not the only good news, if I look hard enough; wonder of wonders, despite the limitations of my exercise- and allergy-induced asthma, I've managed to take a few short walks down the road with BlackJack, and I've even got back on the Wii for 15 or 20 minutes at a time doing the gentler routines. Sure, I collapsed back into bed afterwards sucking on the inhaler like a deprived coke addict, but I moved my body for a while. That's a big achievement for me, after the last few months of hell.

So it's not all bad news really. Just, one step forward, three steps back.

Meanwhile, I think it might be time to ring the solar people and start shouting about this inverter. The road is open, the inverter was promised last Friday, and still we've heard not a single word from them.

Hand me a knife, would you? No, I have no intention really of doing myself (or them) an injury. But I do need to cut some of these damned hairs.


  1. Oh man you're doing it tough Candy. :( xo

    1. Yep, you can say that again. This too must pass....