Thursday, March 28, 2013

The end of an era

It's hard to believe that I won't be returning to the chemo suite, finding a comfy chair (no! Not the comfy chair!) and settling in to be amused and poisoned by turns for four hours or so. The wonderful staff in that suite have become such a bright light in this journey through hell that I've actually looked forward to the sessions.

But today was Treatment Number 6, done and dusted, and I am... free.

Or I will be, just as soon as I slide over this last speed hump and heal the gravel rash it leaves on my poor underside.

***************

Proof.
My cousin Nancy returned to take me to the last round, bless her. She's been the proverbial tower of strength all through this experience, and when she arrived this morning, totally exhausted after a sleepless night and a two-hour drive and hobbling like a superannuated John Wayne after a 12-hour day on horseback mustering cattle yesterday, I was reminded yet again of the stubbornness and determination of our family to follow through on our promises- to ourselves and to others.

She is a cousin in a million, I'm telling you. And yet again, I think how lucky I am.

I was feeling pretty good this morning after some good sleeps over the last few days (definitely NOT including last night when the 'sleep disturbance' side effect of the dexamethasone got me yet again), but still I was a touch apprehensive about this last run-in with the TAC. Each chemo session has had a bigger bill to pay than the last, in terms of side effects and discomfort, and I wasn't sure I had enough guts in me to pay for this one after the ghastly hospital stay took so much out of me.

But you never know what you can do till you have to do it, and  opting out really wasn't a choice; the Bear managed to jemmy Nancy back into the driver's seat of her beaut ute without snapping her legs clear off at the hips, and off we went.

*****************

Want a laugh?

After all that bollocks about my terrible abscess under my arm and my dangerously low blood pressure and how I was "a lot sicker than I thought I was" from that intensely irritating young female doctor, have a guess what my vital stats were this morning when I arrived (NB: my file was marked CHECK INFECTION IS RESOLVED BEFORE TREATING, writ large in red pen).

Armpit: looking almost back to normal, after Miss Sunshine carefully dragged the collected fluids away from it at my lymph massage session yesterday without actually massaging under my arm. Go, you good thing! She is a gem.

Blood test: completely, 100% normal.

Temperature: 36.1.

Blood pressure, after walking from the car park and climbing the stairs: 84 over 55.

(Yep, you heard me, as did Nancy; she noted with some wry sorrow that 84 tended to be more like her lower figure. It's all about your gene pool, sadly, and her high BP causes her as much grief as my low BP... and is far more dangerous.)

Attitude of chemo nurses: Let's get this show on the road!

Thanks god that Young Doctor from Lismore Base was nowhere to be seen. She would have had me flat on my back, hooked up to a drip at 125 ml per hour and supposedly in danger of dying in three seconds flat. Fortunately Margaret has a LOT more experience and good sense (and seems to know the difference between an abscess and an infected seroma to boot).

Thanks, Margaret. Your sanity saved mine.

***************

As ever, there was a lot of laughter and joy in that place. Meleah was full of gratitude for my little plug for her artwork, which had helped her picture of John Lennon get some 30,000 views since I last saw her and brought a lot of well-deserved work her way (yay for social media!).

Everyone seemed to love my latest fingernail art; yay for rainbows, and for covering the basic tell-everyone-I-have-cancer black. It certainly makes me feel more cheery.

That idea of mine may have given the nurses another tool to use to encourage reluctant Morticias to protect their fingernails- apparently they've seen some dire results when people refuse to take on board that simple strategy of painting their nails. Losing a nail is painful at the best of times, and downright dangerous when you're immunosuppressed. Mine have survived very well- not the slightest sign of lifting, and I'm telling you, my nails were not great to start with.

You don't have to be an expert. Just have fun. Two layers of black at the bottom, then grab some cheap kids' nail polish in rainbow colours (the whole pack cost me $13) and dab away to your heart's content. A layer of topcoat, and... bazingo! Pretty nails!

(Yes, it does take a little practice, but you get plenty of that over a course of chemotherapy, dammit. Mine hardly ever lasts more than four or five days without terminal chipping.)

***************

Of course it wasn't all sunshine and rainbows. This is systemic poisoning we're talking about here, and on this last round I started to feel like crap almost as soon as the doxorubicin went in. My body was screaming enough.

I breathed deeply, but already my stomach was squeezing me. The taxotere only made it worse, and when my lunch sandwiches arrived I could only pick at them. I reverted to the iced coffee milk I'd brought with me, followed by another glass of milk from the nurses' fridge. I see a lot of milk in my immediate future...

By the time that drip was halfway through, the sleep deprivation was starting to catch up with me again and I crashed. I felt for poor Nancy, who was exhausted too and sitting bolt upright, but she entertained herself by catching up with my novella, er, I mean my last blog post on her iPhone. She used to be the cook at a country hospital, and she was totally horrified by my tale of woe at the hands of the Soft Food Menu.

As you would be.

I woke in time for us to do some more reminiscing about her beloved mum, my Auntie Yvonne. I got pretty teary there for a while. Being in Lismore Base had reminded me a bit too strongly of her last days there as she slipped away from us with pancreatic cancer, an even more cruel disease than mine in many ways. It was the last place I saw my aunt alive, and every time I found myself in the stairwell where I'd walked away from her for the last time I had been overwhelmed. I'd even been on the same floor. It all came welling out a bit today, now that I was relieved of the anxiety of maybe missing my last treatment due to a random gastric wog and the over-zealousness of doctors who wouldn't listen to me.

It all has to come out sometime. You can't sit on that stuff for ever. And immediately one of the staff found me a box of tissues, of course, without a word said. They are watching, all the time, and noticing what you need.

I love them all so much.

They weren't the last tears of the day. When Margaret unhooked me from the cyclophosphamide for the last time, I was trying to thank her for how much she'd helped my Bear with his anxiety by explaining everything so kindly and clearly the first time we were here. Well, try to mention my Bear and I'm a mess again, of course. Those tissues came in very handy indeed.

I'd brought them a present, of course- two boxes of Lindor balls, which I may not be able to eat myself at present... but at the very least I can have the vicarious pleasure of watching others I care for enjoying them. They went down a treat (pun fully intended).

And I'd written them a card which tried to say exactly what I wanted to thank them for, rather than skimming the surface. They are very special people- compassionate, competent and full of the infectious laughter and joy that people have when they love what they do and feel like it's a fulfilling, worthwhile job.

I am so lucky to have met them all.

**************

The car journey home shook me up a little, given that I was already feeling very dodgy. A milkshake before we set off helped push Ferdinand off the plughole, thank heavens, and I made it home without needing the sick bag that Margaret had thoughtfully provided when I started to feel weird early in the treatment (laughing off my protestation that I never threw up from just the chemo with a cheeky comment that she never enjoyed cleaning barf off the floor... fair enough!).

BUT, chemo, you have not beaten me there... yet.

(touches wood very rapidly indeed)

After kissing my lovely cousin goodbye I retired to bed, frigged around on the computer for a while and went out like a light. Woke up some three hours later realising I needed to eat so I could take my tablets, despite Ferdi doing some cranky backflips which were making me feel like hell.

You missed my dinner time. You are Not Forgiven.

I was forgiven, however, when I produced half a smoked trout I'd saved from the night before.

Cannibal.

You bet. Please Miss, can I have some more?

No, you greedy fish. I know your game. It'll just make you feel bad again.

Isn't that my job?

***************

So the last Day 1 draws to a close. I dread the coming days. I dread even more the approaching cat scan on April 9th, which will tell me whether any other little nasties have turned up in my organs or bones while I've been suffering the indignities of chemo.

Now, that would be depressing.

Think Piglet and Pooh. 'Supposing it doesn't.'

But my heavens, I look forward to reuniting with my taste buds. Buddies, I've missed you so much. Lord knows what you'll feel like eating when you return. Will you be unable to eat chocolate or drink coffee ever again? Will your fish fetish remain, after all that cannibalism?

Only time will tell. It's the end of an era, and good riddance, but somehow I suspect that there will be a hangover of some sort to deal with. When you're fighting the Freeloader, there always is.
Thanks, Nancy. Love you to bits.









Monday, March 25, 2013

Going public

WARNING: This isn't a blog post. It's a novella. This is what happens when I am hospitalised and denied internet access for days on end (the message from the nurses' desk when I asked for the WiFi password was “You've got two chances, Buckley's and none- they won't even give it to us.”

***************

Dear Fate,

When I talked in my last blog post about a shining, silver river filling every space vacated by the Freeloader, I was speaking metaphorically. I actually did NOT mean you to earmark forty litres of saline to be drip-fed into my veins until my entire body was as flooded as the friggin' Bungy.

Yours,

Fatface Sausagefingers


****************

On the morning of Day Fourteen I woke at 2am feeling distinctly the worse for wear. Positively queasy, in fact. Regretting intensely that I'd attempted even the single prime beef sausage the Bear had cooked for me the night before.

Don't tell me, I thought, don't TELL me that this is the next surprise- barfing waiting until Cycle 5 to surface. 

Ferdinand completed an unhappy somersault, with a flick of the tail that sent me speeding to the bathroom Just In Case. I don't like sausages, he whined.

You liked them last cycle. And the one before, and the one before. You KNOW you did.

No I didn't.

(Memory span: seven seconds.)

I sat there in chilly misery for some time. Let's gloss over the details, but evidently something wasn't agreeing with my intestines either. By the time I got back to bed I was cold, wide awake and still feeling like crap.

No pun intended.

***************
I wasn't a happy girl. Day 13 had been a step forward; I was rating myself as a 7 out of 10, with 10 being the best I ever expect to feel while on chemo. By the time the dawn lit the sky on Day 14 it was eminently clear that I was no better than a 4. And not just because I'd only had about four hours' sleep.

WTF? This back and forwards business is new. And bloody unwelcome.

I slothed around for most of the day, by turns moaning quietly and trying to find something Ferdi could look at without scornfully decreeing it pukeworthy. But by about 3.30 I suddenly realised something more serious was wrong with me. I felt my face.

Reached for the thermometer.

38.6.

CRAP.

38 degrees Celcius is the crucial number for immunosuppressed patients. Hit that number while you're at home, and it's off to jail you go- do not pass go, do not collect $200.

Did I say jail? I may have meant hospital. In this case, Lismore Base rather than my beloved St Vincents, which doesn't have an Accident and Emergency department. Yes- I was Going Public. I was going to have to run the gauntlet of the NSW public health system... which, like me, is in an extremely vulnerable state.

Be afraid. Be very afraid.

*************** 

Disclaimer: Many of the things I have a whine about from here on are not down to the quality of the employees. Generally speaking, I put the blame at the door of our stupid system of government, which allows a Federal Labor government and a State Liberal government to bicker endlessly about whose fault it is that our public health system is in a state of disrepair, instead of actually doing anything about it.

***************

Poor Bear. There he was, in the middle of finally mowing the forest- a job that absolutely had to be done to try to control my allergies- and I turn up with my sadsack face on and inform him that the emergency trip he's been dreading has come to pass.

Did I say forest? I may have meant lawn, though given the height it'd reached since the sun came out after the floods, anyone could make the same mistake. You could lose a whole class of preschoolers in our yard at the moment. The constant movement would just look like wind ruffling the treetops.

Anyway, he jumped to attention, bless him, and together we threw the bare minimum of overnight supplies in a bag Just In Case they wanted to keep me in overnight (perish the thought). I rang the hospital to warn them we were on our way, assuming that this would ease our passage once we arrived.

(You out there? Yes, YOU. The one snickering. I see you have experience of the public system. Stop it Right Now. I am a public hospital virgin, and I'm not well, and you should at least try to be more sympathetic.)

So an hour later, there we were at triage. The triage nurse immediately took my temperature, which had risen to an alarming 39, and handed me a mask.

“Put that on. When we've finished here with the paperwork, I think it would be wisest if you waited outside on that bench instead of going anywhere near the waiting room. We have no idea what we've got happening in there. You'll be safer outside. We'll call you as soon as we've got an isolation bed- we're just finding one now. It should be about five minutes.”

Well, that was a good start. This public system isn't so bad, I thought.

It probably didn't help control my level of false expectations that they'd booked me in as a private patient, complete with handing me a little blurb about how I would get a better deal such as a private room. Apparently booking me in privately gets them a lot more funding, and at no extra cost to me. But of course, what it did very effectively was set me up nicely for the fall.

Private room? I've had one of those at St Vincents. It was rather like a good motel.

(STOP it.)

****************

An hour and a quarter later, as dark was starting to fall, I sent the Bear inside to check whether we'd disappeared into a black hole in the system. He emerged a few minutes later shaking his head.

“They're very apologetic. They're having trouble finding a bed. They hope it won't be much longer.”

(I leave it to your vivid imagination to add the appropriate level of sarcasm to the relaying of that message. Let's just say it was clear that the Bear wasn't best pleased.)

A further fifteen minutes, and an orderly arrived.

“They're just cleaning the room thoroughly. I hope the smell of bleach won't bother you. It should only be another few minutes.”

Yeah, right.

And bleach? Mmm, perfect for my chemo-nose. I can hardly wait.


As you can see, the scales were already falling from my eyes- just a little.

**********************

The promised 'room' did eventually materialise, far enough down the track for no bleach smell to be detectable. The ER isolation room resembled an empty linen closet, but with less facilities. (And my last linen closet had a better paint job.) My dream that the Bear and I would be able to watch the football, a game we'd been looking forward to all week, while they dripped antibiotics into me for a few hours disappeared in a puff of public health system reality.

Crap, I thought.

Not for the last time.

But- First World problem. Get over yourself, Candy. You're here to get better, not to be entertained.

And so began the lunacy.

*****************

It soon became evident that I wouldn't be going home any time soon, as the ER's method of recording and transferring information down the line was proved over and over to be singularly ineffective. The door to the linen closet closely resembled that of a manic cuckoo clock. Over the next two or three hours, strange face after strange face popped in through it, asked me exactly the same set of questions and popped out again, never to be seen again. So long, farewell, auf wiederseh'n, goodbye-ee! The alps must be nearby, methinks! Don't forget your lederhosen!

In between flashbacks to musicals from my past, my body fluids were extracted and medical statistics measured to within an inch of my life. Bloods, temperature, blood pressure (ooh, too low- “that's normal for me,” I smiled), chest x-rays (I had a cough, you know, and an allergy was MUCH too simple an explanation), you name it. Nobody seemed to have a clue what was wrong with me. As usual, I looked far too well for any of the labels they wanted to slap on my forehead. And other than a sick feeling in my tummy, I felt pretty good once the Panadol they gave me had taken effect and put my temperature back to somewhere around normal.

Dinner time came and went, and Ferdi started to get seriously cranky.

“Am I likely to get anything to eat here?” I asked a nurse.

She looked a little startled. I explained what chemo does to one's stomach, the first of many times I would have to run through this little speech in the coming days.

“I need small amounts of food often or I get nauseated,” I explained.

“Do you need an anti-emetic?” she offered.

FFS. What do they teach these people at nursing school? If in doubt, offer drugs instead of sustenance?

“No, I need food,” I spluttered.

“I might be able to get some sandwiches,” she frowned.

“Don't worry,” I said, as Ferdi snorted in disgust. “I'll send my partner out to get me something.”

You see, Ferdi was suddenly tapping on his tank with a bright idea. Well, he thought it was a bright idea. I thought he was raving mad, but who am I to argue with a fermenting fish who has the power to make me feel like hell in an instant if I ignore him?

“McDonalds,” he whispered.

You mad bastard of a fish.

McDonalds it was. Cannibalism being the current trend, I sent the Bear to get me a McSlab of McShark with McFat-soaked Spuds, hold the crappy McSoft Drink.

And Ferdi positively wolfed it down. Well, he rejected the bit of bun that only had a metric tonne of hideous sauce and plastic cheese in it, but the rest went down a treat.

You mad, sad bastard of a fish.

************************

Somewhere in the chaos, I managed to extract the immunosuppressed/febrile treatment protocol from one of the talking heads and discovered that they were definitely keeping me in overnight to administer antibiotics. Which they then commenced by shoving a needle in my right arm, despite me waving wildly and pointing to my port-a-cath.

What fun, calloo, callay.

So I sent the Bear home. He was getting That Look in his eye again. If he wasted no time he could catch the end of the football, at least, and then get some sleep; it was increasingly obvious that I was in for a long night.

“Surely they can't be leaving you in here,” he protested, assessing the linen closet again with some dismay. “Surely they'll find you a bed upstairs on the ward.”

“I'll call you and let you know,” I promised. “Just go. There's no point both of us being exhausted.”

He went.

********************

And so began the Battle of the Saline. Gentle reader, have I told you? I have phenomenally low blood pressure, all the time. It's nothing unusual for me to register a reading of, say, 85 over 55 when lying down, a result that raises red flags in every hospital protocol in the world and in other people (do you hear me? OTHER people) signifies imminent death or disaster. 

Meanwhile I'm wandering around like nothing's happened, wondering what all the fuss is about as doctors chase me down with red flags and litre bags of salty water.

When I was having my tonsils out when I was twenty, for example, they woke me every hour to make sure I wasn't bleeding to death (clearly, I wasn't). By the time I was discharged I was completely exhausted, simply because I hadn't had any sleep. And this happy pattern was about to be continued, despite my every protest (and despite me sharing that story with anyone who'd listen and many who wouldn't). 

In the ER, their approach to my constant low readings was to fake it till I made it. They took a blood pressure reading off my calf, and sure enough it was higher (bravo, ladies and gents- I do like a creative approach to inflexible rules). That, plus the fact that they'd managed to get my temperature back to normal, was some sort of metaphorical gateway that allowed them to transfer me upstairs out of their hair so I became someone else's problem. What with the screaming chaos that is the Base Hospital's ER after dark, they didn't really have the time or resources to solve a complex problem for a patient who was obviously not about to drop off the perch any time soon.

I was pleased to go. I didn't want to be a GOMER* any longer than necessary. 

*GOMER: ER doctors' code for problem patient- originally applied to those who are clearly doomed and will thus incur endless paperwork, but by the looks on the doctors' faces I think my case will stand up too. Acronym for 'get outta my emergency room'.

******************** 

Look! Up in the air!
It's a TV!
I was wheeled up to level 7 attached to a small bag of powerful antibiotics and a super-king-size bag of saline, which I foolishly assumed would be a one-off. On the bright side, my new closet was somewhat larger if in no better repair, and it did have a TV the size of a Webster's dictionary located so high on the wall that I risked dislocating my spine by looking at it. The football, of course, was long gone, but I managed to find the Footy Show (god help me- I can't bear that program) and catch the score once my bed had been scraped along the wall and parked by Braille. (Yeah, the room was that small.)

Watching the replays of the main plays was like watching ants run across the wall. I gave up, put my neck back into joint and flicked around till I found a decent music video channel; I used the loo (“Don't use the one in your room!” admonished the nurse without explanation- “You have to go across the hall to the communal bathroom!” Hmm, some private room) and drifted to sleep to the murmur of Jimmy Barnes, the Angels and Crowded House.

Of course, they kept waking me every couple of hours to take my temperature and blood pressure, and the saline didn't take long to make its way to the exit either, so I got hardly any sleep really. I'd expected that on the first night. There was a certain amount of tsk-tsking at my readings, but I was too exhausted to care.

“Normal for me,” I'd mutter sleepily, and close my eyes again more in hope than expectation.

****************

Ferdi rapped on his tank at 3am, when I actually was asleep for once. Thanks, mate. Nicely timed.

Sarcasm is lost on a decaying fish. He rapped harder.

Food. NOW.

Shit. I wonder how the night staff will deal with this?


I pressed the buzzer and prayed.

My prayers were answered by a sweet and helpful nurse who, after my compulsory chemo-patients-and-food lecture, managed to find me a little tub of custard and a plastic spoon. It was manna from heaven. Ferdi smiled and went back to sleep.

So of course, when breakfast still hadn't arrived at half past seven and I pressed the buzzer again, I was anticipating an easy resolution of the problem. I definitely wasn't anticipating the grumpy male nurse who answered the buzzer twenty five minutes later and told me that breakfast would be here in fifteen minutes and I'd “just have to wait”.

“Well, thanks a lot,” I replied; given my tone, it's a wonder his head remained on his shoulders. “I've actually been pressing the buzzer for nearly half an hour, so the waiting has been going on for a while already.”

I was gobsmacked. Does nobody know anything about chemo here??? And Ferdi was furious, scratching at the tank walls now with his sharp little fins.

Kill the infidel, he howled.

Happily, I replied. But I'm hooked up to this damned machine. How about I just drop him in his own shit a little later?

Cool, replied Ferdi. Meanwhile, feed me or You Must Suffer.

I was saved from internal carnage by another sweet nurse, who crept in with a cup of tea. “This is all I could get for you,” she murmured.

Oh dear. Mr Crankypants must have had a whinge at the desk about the demanding patient in Bed 16, and this sweetie had obviously taken pity on me on the quiet.

“I can't drink tea,” I said sadly. She was really trying to help, and her face fell. “But if I could have a little bit of milk in a cup...”

She returned a few minutes later with the sanity-saving milk. I thanked her profusely, drenched Ferdi's dry scales and settled back to wait the supposed fifteen minutes, which stretched to a good half hour before a nasty little tray of Weet Bix (which I can't abide even when healthy), white bread with the crusts cut off and cheap strawberry jam appeared.

My god.

I drank the milk meant for the Weet Bix, ate the white bread smeared with a bit of icky jam (holding my nose against the overly sweet smell) and leaned back with a groan. If this was an indication of the quality of the food, we were in serious strife.

****************

Dr Mellow appeared to appear before 9, accompanied by a bevy of young doctors. Or students. Or strangers off the street. Who knows? It's not like anyone ever introduces the spectators to the patient, is it?

It looked like Dr Mellow, but clearly I was mistaken.

Ba-zooooooiing. Mellow my arse. Minus ten points, Mumbles, and it's only this drip stopping me from leaping out of bed to strangle you.

And minus another ten for the lack of eye contact while you talk to me.


So I did some eavesdropping. He wasn't overly concerned about my current health status given that my bloods had shown I wasn't neutropenic, he told the floor (in other words, I wasn't as immunosuppressed as everyone was assuming; I don't know why the floor cared one way or the other). But he insisted that I was staying where I was until they identified the source of the infection and I stopped spiking fevers, given that my blood situation could still deteriorate over the next four days or so of the chemo cycle. 

The main focus of suspicion, he thought, was my dodgy underarm, which had started to swell up again since Dr Goodguy drained it some weeks ago and I suffered the agonies of Rulide for a week without totally clearing it up. 

I knew Dr Goodguy would beg to differ, but I left that battle to him.

As the students, or interns, or whoever the fuck they were, turned their backs and walked out the door, Mumbles leaned over, gave my foot a kindly squeeze and smiled at me.

“Sorry you ended up in here,” he said, reverting effortlessly to Mellowness.

You weird piece of work. 

I smiled back, somewhat unnerved.

“Have a good day,” I replied, thinking encourage the behaviour you want to see. 

So WTF was that? A performance of indifference for the benefit of the students? How about you teach them some bedside manner instead of hiding it from them? 

I shook my head in amazement.

******************

My door then reverted to cuckoo clock status for some hours. First to appear was Mark the Cancer Liaison Nurse, a kindly soul who listened with great sympathy and understanding to my story of woe about requesting food before breakfast time. He probably listened even harder given that I burst into tears in the middle of it. The frustrations of the last twelve hours of fighting to have my voice heard were getting to be more than I could take; cancer teaches you very quickly to take ownership of your illness and responsibility for the state of your body, yet everyone here seemed hell bent on wresting all control away from me. It was maddening.

He marvelled with me at the ignorance of the nurse in question, and promised to give the culprit his dues. We talked about everything from whether I needed a shower stool at home (possibly, if Round Six hits me harder than Round Five) to whether I needed some domestic assistance with chores (definitely, before the Bear has a total crack-up) to how I was going to manage my diet while I was in here, given the intractability of hospital catering (soft food diet duly ordered).

I got a visit from that male nurse shortly after Mark left. A sincere apology was forthcoming, plus a personal assurance that he now understood a lot more about what chemo does to the patient's guts. That gave me the confidence to forgive him for being a numpty; while people can admit they were wrong, there's still hope.

Bravo, Mark; job well done.

Then the Occupational Therapist popped in; she looked about 16 and regretfully informed me that the hire service for shower stools didn't go out as far as the Bungy (surprise!!).

“But you can buy one for about $100,” she smiled.

As if. I think I can put a plastic chair in the shower for less than that, thank you. 

And then there was the social worker. Well, Simone was a hoot. We hit it off at once.

“Did you know the quickest way to obtain the services of a social worker is to cry?” she chortled at one point.

“Oops,” I grinned.

By the time we'd talked for an hour, she was asking me for advice. I guess that says it all. We tossed back and forth the best way of suggesting to a cancer patient that it was a good idea to make a will and arrange Power of Attorney, without shattering their positivity; it reminded me that I had one but not the other, and she promised to send me the forms to apply for financial aid for getting a solicitor to organise POA.

“You seem to be coping amazingly well with all this,” she said. “When I put my professional hat on and assess your situation, it's your partner who raises all the red flags, not you.”

“Exactly,” I said. “He's my biggest concern.”

She signed off with a promise to try to 'accidentally' bump into the Bear, in the most casual way, somewhere along the line. And turned up way after hours- 6pm- to do exactly that, hit it off with him straight away as well, and managed to squeeze in a suggestion that help was available in various forms if the load of grief was getting too much for him.

Which startled the Bear a little, but not so much that he turned off the charm. A good sign.

Next through the spring-loaded door was the dietician, and this time I got a genuine cuckoo. She presented as completely batshit crazy, all inappropriately wide smile and heavy makeup and madly batting eyelids behind the pebble glasses. I wasn't sure whether she was flirting with me, or perhaps had absentmindedly put contacts in as well as wearing her glasses and was now wondering why she couldn't see properly.

By the time she left I had absolutely no idea what was going to turn up under the plate cover for my next meal, and she'd talked me into ordering an Ensure-type drink based on fruit rather than milk for morning and afternoon tea. Cuckoo! Cuckoo! Frankly, I just wanted her to leave. I would've agreed to anything to stop those crazy eyes fluttering at me.

Possible I'm being a little harsh on her. I was exhausted from all the questions and all the new faces. After all, by this stage I'd really had very little sleep for days.

In between all of that, there were doctors and nurses taking my blood and my blood pressure and my temperature and my heart rate and my oxygen saturation and... you get my drift. And as ever, despite the fact that I'd come in to have a fever diagnosed and treated, all eyes ended up focussed on the show-off in the corner.

“Your blood pressure is too low,” proclaimed one doctor, who looked like she'd been in the game about two weeks, catching me as I was wheeled out the door to go for an ultrasound of the suspect underarm. “You need to drink more fluids,” she added accusingly.

Nice bedside manner. Did you work on that at school, or does it come naturally? 

“This is my fourth bottle of water since last night, and I've had fruit juice and milk as well,” I protested. “My blood pressure is normally very low.”

I might as well have been talking to a textbook.

“Take your water bottle with you and drink the rest of it on the way down,” she ordered. “And we're upping your IV fluids.” (Because there's just no knowing how much it'll take to burst your bladder, and we want to find out, added the increasing sarcastic voice in my head; I was starting to lose my sense of humour with her, which is a dangerous sign.)

You'll keep, I thought. And was wheeled off to the ultrasound, which showed nothing to alarm either Dr Goodguy or his infinitely impressive surgical registrar, who visited me the next day.

“Dr Goodguy doesn't think the fevers have anything to do with your seromas, and he says sticking needles into them is far more likely to cause infection than fix it,” she said. “He apologises for not coming himself, but he's been in surgery all day.”

But he still somehow found time to assess my problem promptly, I noted.

****************

Enter the forty litres of saline. Bag after bag was strung up alongside the antibiotics. Honestly, I didn't actually counted how many I had, but by mid-afternoon that day my fingers had swollen up like cocktail frankfurts on steroids and the Bear told me my face looked like a blimp. (He was much more polite than that, but everyone in the room got the message.)

I got cranky with the overconfident and clearly inexperienced young doctor then. I mean, how much experience of patients who don't fall neatly into the average can you have at that age?

“Look at my fingers. What does that tell you? Does it tell you that I've got enough fluid in my system? MY BLOOD PRESSURE IS NORMALLY LOW.”

“It tells me I need to change the drip to the one that stays in your veins instead of leaking into the tissues,” she said stubbornly.

I felt like slapping her.

“DO I LOOK SICK TO YOU?”

“I think you're much sicker than you think you are,” she proclaimed.

I restrained myself from leaping at her throat with difficulty, my self-control somewhat aided by the fact that I was tied to the drip stand.

“And I'm telling you that my blood pressure is normally like this. You're putting so much fluid into me that I'm not getting any sleep because I have to get up and wee every hour, and now I'm blowing up like a balloon.”

“Well, you still need fluids to get your blood pressure up.”

“DON'T PISS ME OFF,” I warned.

She looked a little startled at that.

“Well, I'll slow it down a little.”

Jesus wept.

*****************

But wait- I missed something. How could I forget to tell you about lunch?

When I lifted the cover on the plate I completely forgot that there was a nurse in the room attending to yet more obs. Gentle reader, I apologise for the blasphemy and profanity. It surprised even me.

Jesus Christ, what the fuck is that?” I yelped.

Imagine a plate of puppy diarrhoea.

Now, add a serve of semi-cooked chunks of potato ('wedges', proclaimed the accompanying menu optimistically) and a huge and unnerving pile of tiny cubes of carrot which are tumbling into the puppy poop. (Um, 'beef hotpot'.)

Yes, that's right, the size of carrot cube that seems to appear in every sample of vomit.

As the crowning glory, top it with a pile of something green and completely unidentifiable on the side. It's the shape of chopped celery, or maybe overly big and indigestible beans, but it's a peculiarly bright green. When you touch it, it's squishy.

'Pureed peas', hyped the menu.

What?

Why? 

I ask you, why would you chop off lengths of pureed pea and try to make out they were something else? Are all people who need soft food assumed to be completely senile?

The entire effect was enough to put me off food for a year, even if I didn't have Ferdinand looking on in disgust. I tried to eat some of it, because I needed to put something in my poor empty stomach.

Mostly, I failed. It was absolutely despicable.

************

By 3pm I had developed a headache, asked for and taken Panadol, spiked a fever again despite the tablets and thrown up the despicable lunch. I'm still not sure whether that event was due to gastro or the terrible food; I suspect the former, though the food certainly didn't help.

My confidence in the public health system was not exactly enhanced when I pressed the 'call nurse' button in the loo while sweatily recycling my lunch, and the response time tended toward infinity. (Read, 'nobody came'.)

Not for the last time.

Meanwhile back in the cuckoo clock, nobody seemed to have the least idea what was wrong with me. A nurse came round to access my port-a-cath, so they could take more blood without turning me into a pincushion; that was an absolute farce. She appeared to get the connection locked in just fine, but it wouldn't draw blood until the Bear, with his extensive medical background of common sense, pointed out that I was both lying down and hunched up like something found wandering sadly under Notre Dame- not exactly the posture used at the St Vincent's chemo suite when the nurses are trying to use my port-a-cath.

He turned the handle to lift the bed into a sitting position, and the blood flowed freely.

FFS. 

Despite all that, a little later I was told that a 'peripheral blood sample' was needed, which couldn't be taken via the port.

Say what? Surely the whole point of accessing the port was to stop punching me full of holes, so there would be fewer entry points for infection? 


You're stooping to logic again, Candy. 

“I think I've got a gastric virus, in which case all these antibiotics are doing absolutely nothing. Have you tested for that?” I asked the young and arrogant one as she tried to take blood from my foot, missing the vein and blaming my 'collapsing veins due to low blood pressure' (bullshit; it worked perfectly well after she'd gone fishing at a better angle).

“It doesn't fit the profile,” she replied.

“It does for me,” I replied. “Gastro's the only thing that ever makes me throw up.”

She was completely unmoved.

The blood pressure circus continued unabated. Only the pleasure of watching the ants on the wall for a few hours on Foxtel that evening kept my mind off mutiny; the sole benefit of my stay seemed to be access to a TV channel that let me watch all the weekend football games instead of only three.

Dinner was at least partly edible, given that it included fishcakes. Ferdinand accepted them grudgingly, muttering yours are better.

Well, I should bloody well hope so, Ferdi. 


I filled any lingering holes with another bucket of custard, which Mark had ensured I had available in numbers in the staff fridge. By now it was starting to taste like exactly what it was- longlife, slightly plastic and overly sweet. But it was better than enduring Ferdi's punishments.

And then a 'diet aide' arrived with the supplement drink recommended by the dietician. I sniffed it suspiciously; bleaugh.

Drank it down anyway.

And regretted it for the next six hours. The acidity of the fruit put Ferdi into complete meltdown, sending hideous burning bubbles up into the back of my throat over and over again. Sleep was even rarer than the previous night, and interrupted yet again by a brief fever spike.

Not to mention the dozen trips to the loo to release the river of saline back to the wild. I was literally getting up at least once an hour, unplugging the drip monitor, wrestling the drip stand across the hallway (it clearly wanted to be a shopping trolley in its next life), attending to the drainage of my poor waterworks and then washing my hands like an OCD sufferer for five minutes as I realised how many other people were using that bathroom. It wasn't exactly conducive to going back to sleep quickly.

When I was woken from a sound, if brief, sleep at 7.30am by a nurse wanting to take obs, despite me having specifically requested that I not be woken, I was ready to commit murder.

*****************

By now I really was seriously pissed off, and that is not good news for anyone who gets on the wrong side of me. It sharpens both my wits and my tongue, and it takes down the gate of good manners that usually prevents me from speaking in haste and repenting at leisure.

I did warn them.

To make matters worse, for them, waking me from a deep sleep had ramped up my mood to carnage. I once punched my brother in the face on Christmas morning because he woke me up at what I considered an obscenely early hour. (In my defence, I was probably only about six years old at the time, and it was before 5am.)

The next person to walk through the door copped both barrels.

*****************

My blood pressure reading on waking had been 85 over 55, unsurprisingly for me given that I'd been fast asleep and dead still on the bed. But by the time I'd taken myself to the toilet for the four thousandth time in the last eight hours, yet another new face had appeared- this time a male, but equally young, doctor. It was not an auspicious start, as first he mispronounced my name down the corridor at the top of his voice (as though I would somehow appear in my bed if he yelled loudly enough) and then began to rabbit on at me about my low blood pressure (how original).

If anything, he was more arrogant than yesterday's china doll.

“Don't piss me off,” I repeated dangerously.

That startled him a little.

“So what's wrong with me, then? Come on then,” I challenged belligerently when he shut up for five seconds. “You've done all these tests and you still have no answers. I came in with a fever. What's your diagnosis?”

He was astonished. He burbled on for a while with some vague and poorly-based rationalisations for keeping me there and filling me full of fluid, without being specific about the fever at all, and I batted his bullshit back to him with interest as only the best friend and ex-wife of medicos can do.

That kept him astonished and on the back foot. I didn't enlighten him about the source of my confidence with medical language; let him wonder.

“Do I look sick?” I challenged again, once I had him reeling.

“Um, no,” he admitted.

He took my blood pressure. It had risen to 97 over what-the-hell; they only seem to care about the top number. Well, dur; I'd been up and walking around. Not to mention that I'd lost my temper with the little prat.

He went away needing a flea collar and earplugs, in that order. I never saw him again.

**************

Breakfast consisted of a tiny cup of canned fruit and a tiny cup of yoghurt. Honestly, I never thought I would crave McDonalds, but it was happening.

The usual endless battle-of-the-obs continued; somewhere along the line a new nurse appeared and took blood from my port-a-cath with no trouble. Then the original nurse (the one who'd had all the problems the previous day) tried to do the same thing a few hours later, and it jammed up on her again and refused to cooperate. At All. She went away without her blood sample.

In between all that, they left me pretty much alone; maybe because it was Saturday and there were less doctors floating around. Or maybe they were all scared of me now (good). I entertained myself by filling in the communication board, which nobody had written on since adding my name and the date on Thursday night when they brought me up here. 
In the whole time I was there,
ONE person actually read this.

When an unbelievably inedible lunch arrived- a scoop each of mashed potato and mashed pumpkin, topped with hideous salty gravy, and resembling nothing so much as a stool sample- another male nurse noted my disgust and suggested I take myself down to the cafeteria instead. Brilliant. 

I unplugged myself and rolled the drip stand to the lifts, calling “I'm running away from home” to the nurses' station as I passed. 


******************

The cafeteria was more interesting for the conversation than for the menu. My drip stand was a licence to converse about how dire the hospital food was.

“I'm here to get something edible for my mother,” said one lady. “She can't eat that muck.”

“My father was in for three months once, and he was refusing to eat at all until I gave him a serious talking to,” chimed in another. “Then I got admitted myself for a week. The moment I got let out, I went and apologised profusely to him. You just don't imagine they could serve up anything this bad to people who are sick.”

If the hospital food scored minus ten, the cafeteria fare was no more than a zero. A prawn sushi roll was overcooked to rubbery chewiness and rolled in overpowering sesame seeds. The pie I took back to my room prophelactically, in case dinner was also inedible (which it was- completely), tasted of nothing but pepper and was filled with gristle and gravy. I managed to eat enough of the rubber prawn to shut Ferdi up for a while, but that was more thanks to the branded iced coffee milk I purchased than to the produce of the shop.

And then I was treated to the delights of the same nurse making a second attempt to make my port-a-cath work for taking blood, which involved removing the original connector she'd used and starting again (so much for minimising the number of holes punched in my skin).

But let's look for the silver lining; so far today I hadn't spiked a fever. I crossed everything that it would stay that way. Discharging myself was looking better by the minute. Regardless of the medical staff's dire predictions of disaster looming and my lack of proper food, I'd felt well enough to dance around the room while temporarily disconnected from the drip, and I honestly couldn't understand what I was doing here. It's not like I had a diagnosis after nearly 48 hours- not even close. Nothing had grown from any cultures, nothing had showed up in any tests. I was a mystery with a sole clue of fever, and now even that seemed to be going away.

How wrong I was. By the time the football came on again my temperature was back to 38.6, where the whole story began. I felt absolutely fine, other than being hot and having nothing much in my tummy other than stolen glasses of milk from the staff fridge to cheer Ferdi up. (Yes, I'd taken to petty larceny at the suggestion of one of the more sympathetic nurses. So arrest me.)

And here's the punchline to that: after taking my temperature and discovering I had a fever, what do you think the nurse did about it? Hmmm?

You got it. A big, fat nothing. She went out the door and didn't return.

That got me going again- you bet it did. After over half an hour had passed, I pressed the buzzer.

“38.6, right?” I said when she finally appeared. And waited.

Nothing.

“So what happens next?”

“OH!” Light suddenly dawned on her face. “I'm so sorry, I got caught up and forgot. I'll go get you some Panadol now.”

“Why am I even here?” I asked, before she could leave. In my defence, I still had a fever, but boy was I feeling shitty. “I still haven't got a diagnosis, the food's so inedible I'm feeling sicker and weaker by the moment, and I'm being pumped so full of fluids that I have to get up every hour to wee, so I'm getting no sleep- and all in the name of my perfectly normal low blood pressure. How is it helping me At All to be in here? If I was at home I could get myself some Panadol if I had a fever, and I could have done it half an hour ago.”

“You're not the only patient in this hospital,” she replied, a little snootily.

“I'm well aware of that,” I said. “I'm obviously not sick enough to have any sort of priority, yet I'm supposedly not well enough to go home.”

And so forth. It was pointless, of course. I may as well have been pissing into the wind. It wasn't going to do me any good losing my temper with a nurse. I was on the receiving end of the struggling public health system, and screwups were going to happen.

Thank heavens I wasn't really that sick. Though the doctors begged to differ.

******************

I didn't see that nurse again that night, either. They seemed to be running short of staff who would dare to enter my room. Instead I was visited by a calm and experienced nurse who'd popped in and out a few nights before and impressed me with her quiet competence.

“How are you going?” she asked kindly.

Naturally, that did it; one touch of sympathy when I'm stressed to the hilt, and I totally lose the plot. The anger goes and the tears burst through.

After I'd sobbed out my story of woe for a while and she'd agreed with pretty much everything I said, she broke ranks.

“You're a private patient, aren't you? Why don't you ask to be transferred to St Vincents? The food's better and it's a lot quieter. They won't accept transfers of people who are acutely sick, but I think they'd accept you. You could talk to your oncologist about it in the morning.”

At last, someone offering solutions instead of defending their own dodgy position. Little did she know that the course of action she was suggesting had already been decided on by consultation with the Bear and Jools earlier in the night; both of them were getting increasingly distressed by my distress, and it had seemed like the only real solution- if only I could persuade someone to contact Dr Mumbles on a Sunday.

And here was my volunteer, speaking up of her own accord.

*****************

The night was spent, yet again, being woken every hour or so by a screaming bladder. No matter what I said, the doctors seemed determined to jam enough fluid into me to bring my blood pressure up to what they were comfortable with rather than what was normal for me, and it clearly wasn't working; the liquid was going straight through me. By 5am I was more exhausted than ever and in tears. Again.

In fact, this time I couldn't stop crying. In retrospect, I think my blood sugar was probably so low and my body so sleep-deprived that I was suffering from temporary insanity. Concerned nurses were coming in as they started their shifts, listening to my tale of woe, handing me tissues and consulting each other about what they could do to help me.

Honestly, the Sunday roster was solid gold. The nurse in charge undertook to ring Mumbles, after she'd extracted the whole sorry story from me. Two others conspired to go up to the Children's Ward and make me a milkshake; that milkshake might just have saved my life, because by the time my body had absorbed it and I started to feel like myself again, I was ready to listen to reason instead of discharging myself immediately.

And when Mumbles rang me, I needed all the reason I could get.

“I'm sorry I didn't come and see you yesterday,” he began. “I've had terrible flu all week and I'm trying to keep my distance from my patients- the last thing you need is a dose of flu.”

Well, that explains a few things, I guess. 

He went on to explain exactly why he wasn't going to transfer me to St Vincent's on a weekend (in his view it was still on the cards that I could become an emergency quite suddenly, and St Vincent's doesn't have a doctor on site on weekends- only on call). He would consider it on Monday IF, and it was a big IF, my obs were completely stable.

Meanwhile, he still thought the problem was an abscess under my arm, which I couldn't feel as painful due to having no nerves left connected there; he'd ask Dr Goodguy to come and look at it ASAP, and meanwhile I definitely needed the strong IV antibiotics he was ordering for some days yet.

And if that didn't resolve the problem... perhaps I might need more surgery under my arm.

Which would delay my last chemo session.

That's about when I burst into tears again.

But it's the devil and the deep blue sea, isn't it? If I don't have my last chemo session on time, maybe some of the bastard bad guys escape. But if I do have it while I have a pre-existing infection, maybe the infection runs crazy through my body and ends up killing me quicker.

I needed to be sensible. I thanked the kind nurse again for the milkshake, because somehow over the next half hour it helped me to calm down and remember the aim of the game: stay alive.

*****************

The better news was that Mumbles ordered the fluids to be reduced to 'maintenance only', which translates as 'the bare minimum required to keep your port operational between doses of antibiotic'. Jools had hit the roof when I'd told her that the drip was running saline into me at a rate of 125ml an hour.

“What the fuck?” she shrieked down the phone. “That's the rate you use for people who are flat on their backs all day and not eating or drinking anything at all. What the fuck are they trying to do to you? No wonder you're up all night.”

I suspect the young doctors are lucky she lives in Melbourne.

*********************

And so sanity returned a little, especially when the Bear arrived with more McShark for my lunch and then went out to get me some Asian takeaway, iced coffee milk and yoghurt to keep for later meals. While he was there lunch arrived; interestingly, when I lifted the plate cover to show him, his reaction was almost identical to mine.

“What the fuck?” he exclaimed furiously. “How the fuck are you meant to get well eating that slop? That's despicable.”

It was a repeat of the mashed potato and pumpkin with gravy. The Bear agreed with me that it looked like some animal with unfortunate intestinal issues had deposited it on the plate. Certainly he wouldn't touch it with a barge pole himself.

******************** 
Lunch. The soup smelled so bad the day
before that I didn't take the cover off.
By Monday morning, the bridges with the nursing staff had been mended (“The crocodile isn't nearly as dangerous if you feed it and don't wake it up unnecessarily,” I explained, to raucous laughter) and gone over 24 hours without spiking a fever. 

Dr Mellow returned from the dead before 9am to assess whether he could send me across to St Vincent's, happily making eye contact and chatting away.

“How are you?” I asked as soon as he walked in, cruelly enjoying the moment of slight confusion as I flipped the roles around.

“Much better for having slept all day on Saturday,” he recovered with a grin, and immediately grabbed back the initiative (cackle).

“We'll see if we can find a bed for you at Vinnie's today” (exit nurse, stage right) “and continue the intravenous antibiotics at least another day. Then we can put you on oral antibiotics... when's your treatment again, Thursday? I've still got you down for that... but we might keep you in till then...”

“I've got a physio appointment on Wednesday- can I still go to that?”

“Mmm... not a good idea to massage that underarm if it's got an infection in it. Let's have a look how it's going.”

The underarm passed with flying colours. Perhaps the antibiotics did some good after all. And next thing, Mellow was changing tack completely. I've noticed that he does that quite a bit- says one thing, then continues his stream-of-consciousness thought process aloud until the conclusion is totally different. Maybe he meditates on his treatments by looking at his knee? Who knows?

Who cares? Not me. Because by the time he got to the end of his meandering paragraph, no bed was needed at Vinnie's, because I was GOING HOME.

Oh frabjous day!

Except possibly for the poor nurse, who arrived back triumphantly with a bed for me over there only to be told the plan had changed.

Oops. Poor nurses; the indignities they suffer. Especially at the hands of sleep-deprived, starving crocodiles.

***************

So there you go; I Survived the Public Health System.

(Touches wood frantically, hoping she hasn't just invited Fate to deliver a dose of multi-resistant staph with her name on it.)

Survived? Barely. It nearly sent me crazy, till I cried enough to make people listen to me.

So is crying the answer, I wonder? The social worker thinks so. I've never been big on that strategy- I'd rather try to explain what I need without the hysteria- but maybe it has some sort of demolition-block effect on people's indifference.

Sigh. What does it matter if that's true? It's not like I'm one of those people who can turn on the waterworks at will. I have to be as frustrated as fuck before I cry, and I rarely do so until someone reaches the point of empathy with my situation.

And let's be positive. Maybe it's just as well I was overloaded with salt water, given all the tears. And I guess I've metaphorically washed the Freeloader out of my eyes, as well as having my whole system flushed (no pun intended) so thoroughly that it's a wonder I've got any bladder lining left. Perhaps the river metaphor had a practical application after all.

And now I'm sitting here waiting for them to remove my drip line. Goodbye, river. Thanks for the clean-out... I think. And I'm sending up a private request for good health from now on.

Did you hear me? PRIVATE. I've had about enough of going public.

Wednesday, March 20, 2013

Letting the river flow in

I can't leave you sitting on the razor edge of that last miserable old blog post any longer than necessary. So let me tell you that today I am probably about a seven out of ten on the coping scale.

Not so much on the health scale; if I felt like this on any normal day, I'd be staying home from work and feeling sorry for myself. But actually, in the world of cancer, the coping scale is far more important.

And let me tell you about my visit to Dr Rosie today, too, because those visits are always full of hope and surprise.

***************

Not very interesting? YOU try
living without power for a
week, and this will be the
most interesting photo in
the WORLD.
Naturally, the fact that the new inverter arrived yesterday helped A Lot. No more staggering around in the dark, collecting water for later use, limiting my internet use (in truth, that was one of the worst parts of the experience)... and I can buy ice cream and ice blocks again! Hip hip hooray!

With my mouth ulcers healing nicely thanks to the Kenalog and aloe vera water, I've also been able to reacquaint myself with Ferdinand. Honestly, he's been sulking in his empty pond for a week and I've been ignoring him; given that they reckon a fish has a memory span of about seven seconds, I knew I was definitely going to have to put in some work with him, and so it proved. He was still turning his snub and scaly nose up at Everything. Who the fuck are you, and why are you throwing that shit in my pond? he seemed to say.

Seafood, I thought, trying to ignore the abuse- which of course expressed itself in suppressed heaves at the sight of food, rather than in actual words. Ferdi likes seafood, even when he won't eat anything else.


My idea of heaven...
Bloody little cannibal. I hope when this is all over I don't find I can't face fish, or there'll be hell to pay.

It must be the Polynesian ancestry; I could live on fish quite happily, and shellfish- ahhhhhh! My dreams come true, served in natural hygienic packaging. So even though the smell of the can of salmon was incredibly strong to me- bugger you, chemo nose- the Bear and I laboured away to make Ferdi some fishcakes.

He accepted two for dinner. Then thought quite seriously about recycling them.

Eugh.

I throw up so rarely that it takes me a moment to recognise the signs... but there was no doubt my mouth was suddenly full of saliva, and my digestive system was starting to make waves, if you know what I mean. Peristalsis is the polite and scientific term, if my memory serves me well.

Peristalsis, I thought, can go take a flying leap at a rolling doughnut. No way, you contrary fish.

I put my hand over my mouth. Breathed carefully. Stayed very, very still.

Thought keep-it-down thoughts.

The moment passed. Hallelujah!

****************

While we're on the subject of food...

...there is nothing certain about chemo. That much I've learned. What happens to any one person in any one cycle seems to bear, at most, a peripheral relationship to what happens in the next, let alone to what happens to anyone else on the same regime.

And so shopping for food is a comedy of errors. My biggest problem with anything edible at this stage is that I am Totally Over sweet things (never thought you'd hear me say that, did you?) after supping on custard, Fruit Tingles, Wizz Fizz lollypops and god knows what other sugary treats day and night to try to get this awful taste out of my mouth- and, given the parlously dry state of my tongue and gums, I can't even bear to think about eating anything salty.

That doesn't leave much in the middle. I sent the Bear to town with a shopping list of Things I Might Be Able To Stomach last week, and most of them are lying sadly in the fridge still, barely touched.

The shaved ham and tasty cheese and pineapple rings, which I'd turned into a mental pizza? They tasted like nothing. Nothing at all. The Pringles potato chips, which I thought might provide some texture and just dissolve on my tongue? My tongue felt like the Sahara. No way was I adding more salt.

And that shows just how changeable my appetite can be. Maybe by Friday, or Monday, I'll want those things again. And maybe not. (And maybe they'll all be stale or spoiled by then anyway.) This is a damned expensive disease, and not just because of the pharmacy and doctors' bills; the amount of wasted food is a real worry.

Never mind; this morning Ferdi accepted one more fishcake with much more grace. Perhaps we're getting somewhere.

********************

I went to Dr Rosie to get something to address the asthma that's tormented me for the last week or so, but on the way I had to drive my ute out to the highway to pick up the Bear after he dropped his car off for a service.

Oh dear. Gentle reader, I am actually a good driver- I pride myself on it. But when I got out to the highway, chemo brain chipped in with a vengeance. In the midst of a stream of honking, hurrying semitrailers, do you think I could find the right driveway? I didn't even know if I was on the right block. I felt, for the first time, like the Megwig had truly made me into something out of a blonde joke.

Suddenly in a most uncharacteristic panic, I turned down a side street away from the cranky truck drivers and tried to approach the repair shop from the rear. Except there was no rear entrance- well, not in this street, anyway. I pulled over and took a deep breath (and coughed my lungs out for a minute or so).

I'm sure there was a rear entrance.

U-turn. Back on the highway. Spotted the Bear turning in to the miraculously reappearing driveway of the repair shop. Phew. Followed him in.

Suddenly lost all confidence in my ability to park the car.

WTF?

By the time the Bear had come out of the office, I'd put myself firmly in the passenger seat.

Surprised, he raised an eyebrow.

"Do you want me to drive?"

"I am not fit to be driving. I have chemo brain. I just got totally lost driving to a place I've visited at least twice a year for the last five years."

He shrugged and started up. He doesn't like me talking about chemo brain; he's likely to remind me of my success in completing last weekend's Samurai Sudoku, or still beating nearly everybody I play against at Scrabble, as counter-evidence. But the thing is, it strikes you in the most unexpected way and with no consistency at all. That can be a little scary.

Anyway, the Bear took one look at my expression and shut his mouth like the proverbial trap. I Had Spoken.

And then he drove out the miraculously reappearing rear gate.

Oh. It's in the lane, not the street.

Sigh. I never thought my driving ability would be compromised... but now I'm having serious thoughts about whether I'll be going out by myself at all until this is all over.

Cabin fever, here we come.

*******************

Next stop, Dr Rosie. The Bear dropped me at the door and went off to do the shopping; it was another triumph for chemo brain that I never thought to ask him if he had any money on him or to offer him the keycard.

I guess he would have said something if there was a problem, right? But I always ask.

*******************

Yep, this photo was in the local paper too.
And that's the only photo of the Bear
you're ever likely to see here.
The waiting room was empty- a good sign- and the receptionist and I chatted for a while about the local triumph against Coal Seam Gas in the Northern Rivers. That is mostly what my out-of-work-hours life was about, before cancer hit- saving our beautiful area from the greedy and corrupt multinationals. My neighbour Christine and I had started the first anti-CSG group in the Richmond Valley Council area, and it was a terrible blow to me to abandon ship halfway through the campaign.

Never mind; the right side was winning for once- the first such victory to come to light. It was so good to think that Round One of the battle had gone to the people, and Metgasco had turned tail and fled.

For now, anyway.

I settled down to read a magazine while I waited, and discovered that Miss Chemo Brain had left her glasses at home. Oh, well played. Squinting just didn't do it for me. Large print books for blind 56-yr-olds seemed in short supply.

And then this gaggle of Aboriginal teenage girls walked in the door, and I was totally distracted. How beautiful they were, every last one of them. How happy they were, smiling and joking with each other till I caught their eyes and started to laugh too.

I wanted to tell them how lovely they were- not just on the outside; their joy radiated from somewhere within. But I simply didn't have the breath. I was still coughing every time I tried to speak. I grinned at them instead, and they grinned back.

And then I was called in, and yet again had reason to be grateful for my amazing GP.

******************

After ribbing me a little about my status as a media star, Dr Rosie got down to business. I gave her a longish serve of my woes with my poor sore tongue and my mouth ulcers, and how I'd got myself back to a stage where I could talk without sounding like W.C. Fields after he'd been at the whiskey.

"Tell the chemo nurses before your next treatment," she suggested. "They'll have an idea what to do, whether it's adjusting the dose or some other strategy."

"Will Targin help?" I queried.

"Possibly," she replied, writing what I hope will be my last narcotic script for the duration. One more treatment. One more treatment.

Then she listened to my chest as I coughed and spluttered and tried to breathe in and out for her.

"I don't think it's asthma," she proclaimed. "Just a bad allergy." And prescribed Seretide, in a highish dose given the severity of my breathlessness, twice a day; one puff on the way home, and I'm much improved already.

"Rinse your mouth after you take it," she warned. "These cortisone-based drugs do tend to give you mouth ulcers, and you hardly need that."

(Thanks for the warning, Dr Rosie. The last thing I need is something that makes my tongue worse.)

And after dealing with a few other minor woes, she got down to the holistic approach again. She's big on meditation; it's not something I've ever felt able to try, simply because I know how damn active my brain is and how impossible it is to keep it still.

I don't actually want to keep it still.

"Do you think of your disease in any symbolic form?" she asked, after I'd shrugged off the idea of meditation.

I explained to her about Ferdinand, and the Freeloader, and how personifying them had helped me so much to cope with both the disease and the terrible feeling in my guts.

"And what is replacing the cancer as you get it out of your body?" she asked.

Wow. I'd never thought of that.

"I think it would be good to imagine a positive force that is taking up the space that the cancer used to occupy," she went on. "It's time to stop talking about the cancer now, and to start talking about the good health coursing through your body in its place."

Wow.

*****************

And she's right. As I thought about it, sitting quietly in the chair as she wrote up the scripts, I could imagine a shining, silvery-white river taking up all the empty space the Freeloader and his mates have left behind them. God knows I've had enough experience of the power of water to know that it is unforgiving. It sweeps everything away that stands in its path. It courses into every channel that's left open to it, whether as a trickle or as a flood.

Freeloader, you're about to be washed away.

*******************

We talked about the Bear's fear of radiotherapy, too. He really is so reluctant for me to undergo it; I know it's all about what happened to his last partner, who found the treatment so unbearable that she spat the dummy after two sessions and went home to die.

"That was a large area to radiate," said Dr Rosie. "She would have felt like her whole chest was on fire. It would have been terrible."

"Whereas mine will be pinpointed," I volunteered.

"Exactly."

*******************

By the time I got out of there, The Bear was sitting in the waiting room chuckling with the Aboriginal girls. Everyone in town assumes he's Aboriginal himself; he totally looks the part, with his grey dreadlocked curls and his bare feet and his kind, darkest-brown eyes. He's had indigenous men walk up to him in the street- hey bro- and share their life stories with him, just because those eyes are so kind. And he seems so like one of them.

And he always, always says hello as he passes Aboriginal people in the street. He amazes me. It's in his blood somehow, a relic of his grandfather's work in Central Australia with the indigenous population. They say there's a racial problem in our little town. I've never seen it- not for a moment.

The girls were shrieking with laughter by the time I signed the account and was ready to leave. "Bye," they chorused cheerily, waving as we walked out.

I felt like they were a gift to me today. They were so full of hope and positivity, so unafraid of talking to a wild-haired stranger who even at their young age they'd assessed correctly as a good man.

They made my day.

**************

Off we went to get my scripts filled. On the way back up the road the girls had poured out onto the footpath, their business done; they all waved and cheered and caroused as we went by, and we waved and caroused back.

It was lovely.

*************

The main street of that town follows the river all the way to the Meeting of the Waters, a place where three major rivers meet and flow together towards the sea. As we cruised along it- and cruise we did, the Bear once having been accused of driving as though he was sitting in an armchair- I thought of the way those rivers get overloaded with water after constant rain, and how our particular branch, the smallest of the three, stops running and backs up to flood us in.

That isn't a river. It's a flooded forest...
I can use that. Water is so powerful. It fills every space. It's merciless. It drowns everything in its path. Yet I still love the rivers beyond anything else in this beautiful landscape.

So look out, Freeloader. Run now. The flood is coming, and you'll never escape it.

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. 

Phew.

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.

Thursday, March 7, 2013

Dragonflies and dreams

Afterwards, with flowers from the Bear and his mate


Treatment number five, done and dusted. The end feels like it's in sight, even if the tunnel is sixty miles long and has to be traversed on hands and knees.

I can do this. I can do this.

Of course I exaggerate. The tunnel is twenty one days long to my last chemo session, and probably another thirty days long after that till I start to feel vaguely like my normal self again.

That's only fifty one miles, right? (Not that I'm counting or anything.)

I'm guessing. I have no idea how long it'll be till I can, for example, reclaim my poor destroyed taste buds (oh for the ability to do more than fantasise about flavours!), chew meat (oh texture, how I miss thee!) and gently release Ferdinand back into the wild.

Go well, Ferdi. It may not have always been a pleasure, but you've taught me some much-needed life lessons- not the least of which has been to stop eating based on how my stomach feels, rather than what my eye or personal neediness craves.

(I digress, again. As usual.)

I have no idea how long it will be after March 28th till I get my energy back, but given that I start radiotherapy a mere 33 days after that last chemo, I guess I'll never know; apparently the radio is going to knock me flat too.

Sigh. There goes yet another six weeks of my life, sitting on my backside living vicariously though Facebook and the blog. (When I'm not attempting to flog myself on the Wii or the bike, that is.) But if the Freeloader leaves hand in hand with those lost six weeks... I guess that's fine by me.

And shut the door behind you, you arsehole.

*******************

Getting to that fifth chemo session was always going to be tricky. We were flooded in again- for an unprecedented third time this year (no, no, there's no such thing as climate change)- and I was anxiously watching the skies and the Bureau of Meteorology website for any hints on whether the water would have a chance to recede in time for (a) my blood test and appointment with Dr Mellow, scheduled for Wednesday, and (b) my second-last poisoning session on Thursday.

Thank the lord for social networking; my son's friend Cat flourished the phone number of the SES at me on Facebook, with assurances that her sister was a member and they did this stuff All The Time. (That's the State Emergency Services, for my foreign readers. They're mostly volunteers giving their time, energy and sometimes lives to help people in dire straights during and after natural disasters and the like.)

It was remarkably easy. I made the call, and once they heard I couldn't get to chemo it was pretty much a matter of 'when would you like the chopper and where? One way or two way?'

Truly. It was that easy. I was gobsmacked.

Heaven bless the SES. (Hey, there's a song lyric in that.)

And so on Wednesday morning I turned up down at Jarvis and Christine's place, where there's a big enough clearing for a landing zone, just as the helicopter landed. People, I was feeling pretty shocking still from the antibiotics, but when I saw that chopper...

I LOVE HELICOPTERS. I say LOVE. In my next life, I am so a helicopter pilot.

Do I look like I feel sick? No, I forgot about that. Totally.

Helicopter stories 1. New Zealand, around 1977. Glass-fronted heli-tour of- god knows where, I can't remember. All I remember is that I was flying like in my dreams, straight up and then away, with a full unimpeded view of the ground streaming away beneath me.

Seriously. In my dreams, I fly by rotating my upper body like a helicoptor rotor, rising above the reach of my tormentors and then moving away. I have done since I was a tiny child. Here I was wide awake, in a dream. The dream existed.

One for the bucket list? Get my helicopter pilot's license. Why not?

(Shh. Don't tell me how much it costs.)

Helicopter stories 2. Bungawalbin, around 2009. Driving along our road before the trees close in and the tar ends, I see a cropduster at work on the sugar cane. But it's not a plane. It's the tiniest helicopter in the world, like a dragonfly seen under a magnifying glass, delicate and fragile and beautiful. Straight up it goes, zooming along the rows, zinging around and returning.

It's magic. I want one. THAT would solve our flooded-in problems.

(I said SHHH! DON'T tell me how much it costs!! Let me dream a little longer!)

***********************

The Northern Rivers in flood is quite a sight. Taking pictures was tricky with the vibration and my el-cheapo digital camera, but this is what it looked like pretty much all the way. I was just gob-smacked by the amount of water lying around, and I live here, for heaven's sake.

Cancer? What cancer? I was overwhelmed by the joy of the experience and the power of nature.

That's not the river. Those are people's farms.

Closer to Lismore it's mostly dried out. But we live in a wetland.

***************************

And you know, the pilot didn't just push me out the door at Lismore Airport and take off. He landed first at the private aircraft terminal, saw that nobody was waiting for me and took off again for the main terminal. The co-pilot then escorted me all the way to the terminal doors to make sure someone was there to meet me, and reminded me that if we needed a lift back all I had to do was call.

Gobsmacked.

No need for him to worry on the first count; Jools was waiting for me with open arms. I can't tell you how wonderful it was to see her again. (There may have been some tears.) We sat down and just talked in the deserted terminal for- oh, ages. Caught up. It's been too long. We haven't been face to face since before I started chemo.

There wasn't another human being there; it was, as Jools pointed out, like being on the Marie Celeste. A full carpark, yet not a soul in sight. Bizarre.

We didn't care.

***************************

First stop after that was the blood test, cheerily and efficiently taken by a sweet-natured vampire; second stop was finding somewhere in town to stay. Sadly, the hospital accommodation was as full as a goog; we did a Google tour of the local motels, then a drive-by assessment, and settled on the Dawson Motor Inn on Dawson Street- well away from the highway and visually appealing. (No pun intended, but the nightly pealing of the bells at Trinity Church across the way was part of the allure. I happened to know about it, because I used to work at the childcare centre on the other side of the block.)

And that motel? Good choice. GOOD choice. You come to Lismore from out of town for the hot-diggity breast cancer treatment we have here? You stay there. They have been bloody wonderful. Nothing is too much trouble. Even the food is edible (the cook apparently cried when I sent her one of my little notes of appreciation- she's only been back at work for a month after six years out of the trade. See, you can do so much good in the world by praising where it's due instead of just whining when something's bad.)

And folks- it's CHEAP.

**********************

And so to the oncology appointment. Dr Mellow was a little flustered when we were eventually called in. A five minute search for my file (largely conducted in frantic stage whispers to the receptionists) had failed, and he was noteless. Maybe it was just a Bermuda Triangle sort of day; earlier we'd dropped into Specsavers to pick up my new glasses, and they hadn't been able to find them either (until they canvassed the possibility that one of their employees couldn't spell my name- guilty as charged).

I am an excellent eavesdropper. It's a skill most writers develop early. I grinned at the somewhat bemused medic as I passed him in the doorway and noted cheekily (and possibly a little loudly) that he was noteless, and the tension broke at once.

No way was I enduring another dose of Dr Mumbles. Back in the closet, you! Remember the acid bath!

That obstacle hurdled, we cut to the chase. The good news from the blood test was that my white cell count had returned to an acceptable level, despite the fact that I'm still not convinced the chest infection's been nailed and my underarm infection is most certainly still maintaining a certain level of havoc. The less good news, mildly inconveniencing rather than alarming, was a lowish red cell count (AKA anaemia, a renowned cause of excessive fatigue).

Well, that also explains how flat I've been. Apparently it can also cause breathlessness (guilty as charged).

I'd eat more meat- truly I would- if only I could chew the damned stuff.

The rest of it- high cholesterol, meh. Normal side effect of chemo. All good.

He gave me a very thorough check-over- chest listened to, armpit inspected, other boob checked. All good enough for him to cancel the order for a side order of intravenous antibiotics with my chemo.

"We'll just breed a superbug if we go on like this," he commented after I'd reeled off the list of antibiotics I'd been ingesting for the last six weeks or so. And I couldn't agree more.

So we moved on to where we go next. He was confident enough about how my body's handling things to make the next appointment for after my last session rather than before (yay for me). We talked some more about the radiotherapy, and I told him I'd decided to go with the full Monty- armpit and all; he seemed to think that was a good decision.

Every so often, Dr Mumbles would attempt to resurrect. The gaze would drop. The rambling-to-the-knee would start. And then Jools or I would interrupt him, usually with a pointedly relevant and/or completely irreverent remark, and Mellow would wake up, shove Mumbles back under the desk (or wherever), make eye contact and grin. And get back to being a pleasant, personable and yes, slightly hot professional.

Ladies. Gentlemen. DO NOT BE AFRAID TO INTERRUPT YOUR DOCTOR, especially if he's rambling or if he's lost you completely. SPEAK UP. They are not gods. You are paying them a lot of money for their expertise. Get your money's worth!!

We talked about the hormone therapy some more, too. He just reinforced what I already told you- he doesn't know how it'll affect me. Statistics don't tell him how any individual will react. But joint pain is a possibility, in which case it's onto the glucosamine for me. Flashback to menopause is a possibility, in which case it's off to the Chinese medicine for me (with Mellow's supervision, of course).  Oh, there are heaps of other horrible possibilities- of course there are when you stick chemicals into your body. But we'll sort it when we get there, now I know what to watch out for.

Jools asked about the recent research suggestion that ten year courses worked better than five, and he explained that that referred to Tamoxifen, which wasn't what he wants to use with me. He's got me lined up for Arimidex, which is still too new for the ten-year results to be in.

"Ask me when you've been on it for five years, and I'll be able to give you an accurate answer. At this stage Arimidex looks like having better results for you."

Fair enough.

I asked him if I should be avoiding all soy products, given that I have an oestrogen-loving Freeloader. Ferdi had asked for miso soup with his sushi for lunch, and I'd realised after purchasing it that it mightn't have been the greatest idea.

"Look, if you're eating a concentrate regularly- something like soy lecithin- or if you're guzzling soy milk all the time, that's probably counter-productive. But the odd bowl of miso? Nah. Go for it."

Another Facebook meme bites the dust. Check them out, people, with someone who has the research in their hand. If I had a dollar for every Facebook meme, comment or email that's landed on my desktop to help me out by gently suggesting (or sometimes even laying down the law) on how to cure or kill myself using only food to address my cancer problems, I could probably buy that little dragonfly helicopter outright.

****************************

And so to the supermarket to pick up a few necessities for Ferdinand. Rice pudding. Fruit Tingles and Wizz Fizz pops (YES they do work to get that icky taste out of your mouth). Yoghurt. Pink grapefruit juice.

Back to the motel and a lovely room-service dinner- tempura barramundi and a seafood basket (Ferdi craved prawn cutlets), nothing fancy, but beautifully cooked. Ferdi was a happy lad, and I had a peaceful night's sleep- once I finally settled down my buzzing, flying, joyous head.

****************************

And this morning I woke up feeling GOOD. We even took a short walk together- SO good to go outside without being carried off by squadrons of biting things- SO good to be up to exercising. I was puffed and wobbly by the time we got back, but hell, I'm so glad I could at least set one foot in front of the other.

The chemo ward was buzzing when we arrived. I greeted the delightful Donna, who raved again about the Megwig and how young I looked- how young we both looked! What was our secret?

"Do something you love," I replied. And told her how much I loved teaching, and how Jools had made a decision to cut her anaesthetics hours and start her own business as a Pilates instructor in her 50's.

"I love my job," said Donna. And it shows, honey. It really shows.

Then I grabbed one of the last chairs and off we went, smooth as silk. Jools was, again, delighted by the intimacy of the place- the willingness of the staff and volunteers to stop and chat on a really personal level whenever there was a break in the crazy pace of the place. Our find-of-the-day was 17-year-old volunteer Meleah, who as well as looking after all our food and beverage needs (and everybody else's) promptly and efficiently, showed us some of her art on her iPhone- spectacular photo-realist portraits done entirely in B pencil. (Have a look over here if you're intrigued- Meleah's Artwork ).

I mean, what is a 17-year-old- a 17-YEAR-OLD- doing volunteering in a cancer ward? You tell me whether that's a sign of someone worth watching. Hats off to you, Meleah, and may you go far.

********************

A surprise visit from my Bear, who'd managed to get out of our river-road (finally!) in his 4WD to pick up a mate from the airport as promised, was a total bonus. (The fact that they were bearing a beautiful bunch of flowers from them both had, of course, NO impact on their entrance. LOL.)

And the fact that Jools had the entire last season of 'So You Think You Can Dance', which I totally missed, on her flash drive for us to watch while I got poisoned was another boon. (I love that show, even if Mary Moore does have the voice and self-control of a semi-strangled cat with Tourette's Syndrome. Thank god for the mute button.)

She's a funny girl, my Jools. By the end of the session she'd spruiked this blog to the whole staff of the ward and given the address to Donna, because she's tired of me not blowing my own trumpet loudly enough.

"You're depriving other people of the benefit of reading it," she roused. And told me about her recently-diagnosed nurse friend whom she'd directed here, and who'd subsequently raved about it (in a good way) and spread the word herself.

I stopped protesting. The second function of writing this, after keeping everyone I love informed, is to try to help others through the experience. I can't do that by being shy, can I?

********************

The hours flew. Back to the motel to lie down, start blogging and... book a helicopter home. Because believe it or not, more rain is expected- another tropical cyclone coming our way- and the road is still under water even at the good end, and absolutely trashed where the water's rushed over it too many times. The Bear says there's no way that Jools' hire car has a high enough wheel base to get in, and the water could come up again at any time. He was anxious to get home himself by then, because he drove through water to get out.

(The things men do for their mates. Kind of touching, in a carelessly self-destructive kind of way.)

So tomorrow morning we do a flood shop for groceries, and tomorrow afternoon we abandon the hire car at the airport and fly home.

I can't wait. My kingdom for a dragonfly all my own.