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.
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.
