Saturday, April 6, 2013

The impatient patient

Okay, I'm over it now. Enough with the chemo side effects. Let's get this show back on the road!

(cue new round of exhaustion, mouth ulcers and general agonising digestive dysfunction)



Is the last round of chemo the hardest to endure? Honestly, I think it is, and that's not just because the poisons have accumulated over time and make you feel even worse than before. It's more about the light at the end of the tunnel still being tantalisingly out of reach.

I'm the sort of person who's patient to a fault with everyone around me, and completely lacking in patience when it comes to my own ability to function on multiple levels at once. And I'm a 'do it now' person. Always have been. Some have called me 'impulsive', with that pseudo-politeness that tells you they really mean 'fails to consider consequences'.

There may be a grain of truth there.

So as I gradually emerge from the black cloud of Round Six, knowing that there is no Round Seven hanging over me, all I want is to feel completely and utterly normal NOW. So, naturally, I'm getting ahead of myself with how much I take on and making mistakes. I'm being reactive, and I know it, and it's so damn hard to be sensible instead.

Heaven knows there's plenty for me to react to. I resent to my core the fact that my treatment has made me feel so dreadful, when I wasn't feeling the least bit ill before. I hate that it got me so low at times that I had- and now still have- trouble being positive, and as a result have started thinking about the possibility of death in a way that just hadn't hit me before.

I mean, there's the huge irony. The disease didn't make me feel like I was dying, though I was if I chose to do nothing. I could handle everything that was thrown at me. Mastectomy? Yep. I can deal with that. Lymphoedema? I can fight that off. Recurrence? I'll deal with that if and when it happens, and meanwhile I'll get smart and start exercising and eating better.

But the treatment that is supposed to save me has often crushed completely, and made me wonder if death was preferable (and possibly, at times, imminent).

Good luck working that one out, psyche.

I guess I'm angry again. So much for systematically passing through the five stages of grieving; I seem to be stuck on some sort of nightmarish merry-go-round of emotions, where I get knocked off the cheerful acceptance pony by some ghoulish symptom and am immediately trampled by the red stallion of fury or crushed to death by a rolling black mare of depression.

So as I crawl over the last speed hump, I'm being tantalised by periods of up to 15 minutes where I feel absolutely normal. This causes me to decide I'm fine, and I decide to do way too much. Unsurprisingly, that's followed by being plunged back into feeling like total crap and collapsing into bed again.

It's increasingly hard to bear.


I know I'm not alone. Many of my Pink Sisters, a group of delightful women who also travel the breast cancer road and come together privately on Facebook to commiserate, celebrate and sometimes despair, have felt the same during this last treatment. You just run out of tolerance. The end is so close, and yet you still feel like unholy shit. You just want it over, NOW.

The tank is on empty. You want to believe that some day you'll feel completely well again, but the side effects just keep hammering you with doubt. How long till I can stay awake for a whole day? How long till I can taste my food, or eat real food without pain? How long till I have hair again? How long till I can feel my fingertips and feet? Will it EVER happen? We might get a day's relief along the line and think we're through; the next, back comes some old symptom, or- worse still- a new one.

And we've got nothing left to hit it with. We're tired- unbelievably tired. Positivity? Oh there it is on the floor. I think I walked on it in the night, when I had to rush to the loo for the fifth time. It looks a bit the worse for wear.

Yep, the last round is the worst for sure.


I do have a habit of pushing myself hard. I've never really come to grief through it before; I've managed to achieve some pretty ridiculous things in my time. Putting on a school musical with a double cast of some 60 teenagers, pretty much without any staff support through the whole rehearsal period, whilst parenting and teaching full-time? No worries. Lived it, loved it. Writing a novel whilst running a small business and trying to establish a new relationship, plus deal with hellish legal crap foisted on me by the ex-partner? Survived that, learned from it, thrived on what I learned in the end.

I am a high energy person. I'm determined. I get things done.

Can you imagine the frustration I'm feeling at the moment?


I mean, take yesterday. (Please, take it- as far away as you want.) There were things that had to happen the moment I felt well enough to leave the house. Our freezer had a dead thermostat, and running it all day was killing our solar batteries. I desperately needed to get to the bank. We were out of vital groceries. The builders needed supplies. Yesterday was the day I decided I was okay to deal with all that.

I had a very specific list for each destination. I had a schedule so that we didn't have to backtrack or wait. I was really, really organised.

I mean, seriously. Four tasks on the list. How hard could it be? There was a time when I would have creamed that list in a couple of hours, on my own, and still have had the energy to have lunch at Cafe Cappello, trawl through the op shops for bargains and window-shop the CBD on the way.

But I forgot: my energy bank is empty, all the time. By the time I was fed, medicated, showered and dressed, I was ready to go back to bed. If the Bear hadn't been driving, I wouldn't have gone anywhere; I actually fell asleep in the car.

That is quite an achievement, given that our dirt road resembles twenty or so successive mini-golf courses since the floods. Complete with bunkers. Oof. Hole in one! Doink.

And by the time I had the first listed item in the trolley at The Biggest Hardware Shop In The Known Universe, the Bear was showing all the symptoms of what I call 'Bunnings Rage'. That's the syndrome where you realise, too late, that every item on your list is either going to be (a) on the bottom shelf and invisible to the naked eye, (b) out of stock or never stocked at all, or (c) available in a quantity that is exactly one unit less than the number you need.

And then you look around for help, and realise you are surrounded by congenital idiots who are only in the building aisle at all because they're hiding from the annoying customers in plumbing who keep asking awkward questions they can't answer.

At which point the eyes go dark, the mouth tightens and the trolley starts being jerked around the store like an epileptic robot on crack.

Sound familiar?

I was less than equipped to handle this, given that I was barely awake and my insides had just decided to do the hula again.

"I have to go to the bathroom," I said, and disappeared for ten minutes to moan in agony in private.

By the time I emerged the Bear was worried enough to have got over his BR, so we managed to get through most of the rest of the list without bloodshed. Mind you, I'm still mystified that a major hardware store would stock mops but no mop buckets. WTF? Aren't you owned by a major supermarket or something? I swear they only do it to annoy people.

But I digress.


Next stop was the bank. There were thirty people in the queue. I counted them.

Standing in a queue for over thirty minutes is not a recommended activity for people who are ten days out from their last chemo. Just sayin'. It's just as well the teller didn't try to sell me insurance, which seems to be part of every in-house transaction these days; perhaps she saw the look in my eyes.

Then I staggered over to Hardly Normal, where the freezer I'd selected via the internet and been assured was 'in stock' was nowhere to be seen. I'd had this vision of walking in, planting my hand on it, saying "I want this one", paying and having them pop it on the Bear's trailer, all within ten minutes.

Note to self: chemotherapy causes delusions.

"Nah, haven't got one of those," drawled the young assistant, with no noticeable interest in me whatsoever. (Honestly, there are times when calling shop personel 'assistants' constitutes false advertising.)

As my eyebrows shot to the ceiling, he made a desperate effort to get a sale. Maybe his supervisor was watching. "I could see if they can get one here tomorrow from somewhere else."

"I've got the trailer here today, and I need it today," I sighed. No point explaining where I lived, and that the likelihood of getting the Bear to hitch up the trailer and drive to town two days in a row was slightly less than the chances of me winning Lotto (given that I don't have a ticket). "I'll have that one instead."

Still clinging to the fantasy.

"Well you pay here and then you've gotta go to South Lismore to the warehouse to pick it up," replied Mr Personality.

And, after taking my money, gave me an illegible map. Because just what I needed right then was a mystery treasure hunt to find the damn warehouse, followed by another wait to be unassisted by people with absolutely no interest in their job.

Anticipating that the trip to the warehouse might be seven kinds of torment, we decided to endure the supermarket first. I shall draw a veil over that, other than to say that Bear + supermarket = misery.

By now I was, seriously, ready to drop into a coffin and beg to be hammered in. My limbs were aching, my mouth was aching, my eyelids were drooping and all I wanted was to go to sleep for about thirty years.

But no! We still had to play Find The Warehouse!

We found it.

Someone did, eventually, find one of those freezers somewhere in the bowels of the building and put it on the trailer.

It took forever.


We came home and I staggered out of the car, collapsed into bed and slept for three hours, leaving the poor Bear to unpack absolutely everything (and he did, bless his little furry paws). This morning I woke at the crack of dawn, played around on the computer for a while, fed Ferdinand and went back to bed. I woke again at 11.

When will it end? Just tell me that. When will I have some energy to do things the way I used to do them? When will I be independent again, instead of having to drag my poor Bear around an environment that makes him want to scream from the moment he even thinks about going there?

(I swear he has mild agoraphobia. Just sayin'.)

So here I sit, with my hideous mouth ulcers and my horrible squirmy tummy and my deceased taste buds and my deadly fatigue: the Impatient Patient. People tell me it will get better, though right now it seems impossible.

So I guess I need to trust them. I need to take a leaf out of the White Queen's book, and learn how to believe at least six impossible things before breakfast.


1) I WILL get my momentum back.

2) I WILL taste food, instead of frickin' aluminium.

3) I WILL eat without severe pain.

4) I WILL sleep through the night without racing to the loo.

5) I WILL stay awake all day.

Oh, and

6) I WILL beat this fucking disease.

Pass me that looking glass. I have to walk through it.

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