Tuesday, April 30, 2013

Alternative radiotherapy

Well, according to the calendar my radiotherapy started yesterday.

I decided I would get more effective treatment at Chinaman's Beach, though.

The radiation may have been less targeted, mind you. But the scenery was a lot prettier.

Really, this was the only possible answer to my frustration at the run-around I've been given by the radiotherapy department. A very late call on Friday afternoon informed me that my "treatment had been delayed until further notice".

Oh, really?

Maybe when all this is over I'll start a training school for medical receptionists. Some of the skills taught might include empathy and information sharing. Because seriously, I think this girl had me down as just one more phone call she had to make before she hit the pub. She was ready to hang up, but I wouldn't let her.

So instead of a fast track to the bar, she got a diatribe about not assuming that it was as easy as one phone call. I would now have to contact all the people who'd agreed to be on the roster to drive me an hour each way to treatment every day for six weeks, and leave them hanging up in the air too. Because of course, nobody else would have any other plans, would they? They're all just hanging on my every word, waiting to drop everything to be of assistance.


And, while we're at it, every moment of a cancer patient's treatment is carefully marked on the calendar. We hang on to the thought that one day, this hell will be over, and our only real control is marking off those days. Every time you put the dates back, we suffer. We wonder if there's some medical complication that nobody's thought to tell us about. We stress that the Freeloader is taking this opportunity to multiply a little more. We mourn the lost week that we spend in purgatory while we wait, yet again, to move forward.

And that's not even the half of it, when you've got a partner who's been through all this before and who's been dreading the radiotherapy from the start and trying to dissuade me from having it at all. His experience 14 years ago with his previous lady was just horrific. Those were the days of blast furnace radiotherapy, and given that she had an advanced and terminal tumour that had pretty much exploded out of her chest, the area that was zapped was huge. After two sessions of being burned to a crisp, she snapped, refused to take it any more and went home with him to die.

Of course, it's not like that any more- it's much more targeted- and I am not already dying. The areas to be radiated are much smaller- tiny by comparison. But I still have a partner who is traumatised and anticipating carnage no matter how much I try to reassure him, and changing the dates when he's braced himself for this to start on Tuesday- well, that's really fucked.

And now I have to deal with that as well as my own feelings. Thanks a lot.

The flibbertygibbet on the other end of the phone seemed slightly put out by all this unsolicited and uncomfortable information. I could almost see her checking her watch as she "Oh"ed and "Really?"ed on the other end of the line. Dammit, she probably still had five calls to make before she could get out the door.

She definitely needed a scholarship to Candy's College of Communication and Compassion (yesterday would be good.)

Reluctantly, she shared that no, it wasn't a medical complication; it was "the plan" which hadn't been finalised yet holding things up. It had many checks that had to take place before it could be approved, and for some reason mine had stalled at one of the checkpoints. She agreed to call me with a definite start date first thing on Monday morning.

She didn't, of course.


By 11.30 on Monday I was in a less than agreeable mood. I rang and spoke to a much more skilled receptionist, who agreed that this wasn't good enough. She explained that there were no less than seven hoops the treatment plan had to jump through before being approved, because they needed to get my treatment exactly right.

Well, yes; fair enough. Of course they need to be sure, and careful. Um, how many weeks does that take the experts? Hmm?

And she promised to talk to the radiotherapists and the doctors and ring me back with a definite start date by Monday afternoon.

She didn't, of course.


Fortunately I had an appointment with Dr Rosie on Monday afternoon too, and so I let off some steam to her while she updated my Centrelink medical certificate (a little bit of loop theory scheduled every three months, because hello, Centrelink does not seem to have the slightest understanding that breast cancer eats almost a year of your life even if everything goes well).

"They probably forgot about the school holidays," she offered with her usual serene smile. "Someone who needs to sign off on the plan is probably away."

And that, my friends, is the best and only explanation I've been offered by anyone. Given that I first saw Professor Power Ranger months and months ago, and that I had my tattoos weeks and weeks ago, and that they keep reassuring me that it's not a medical complication holding things up, it's also about the only explanation that makes sense.


So when Tuesday dawned and we were still none the wiser, we jumped in the car and got our rays the natural way. I soothed the Bear's fractured feelings a little more by insisting on a healthy supply of beer and prawns, which worked remarkably well as we sat on a rock watching the sea do its thing.

The view from our rock. Looks like we're up high, but we're not...
I became fascinated by the patterns around me. I completely forgot why we were there, and where I thought I was going to be today.

(I can't imagine where the Bundjalung people got their inspiration for dot painting, can you?)

I stood at the edge of the water for ages, hypnotised by the way the sand defied gravity and rolled upwards for a moment as the waves coming in met the waves rushing out. You had to wait for exactly the right pairing of waves to see it. After a while the Bear came and stood there with me, waiting to see what I was staring at for so long.

"There." I pointed suddenly, as for a few seconds the sand rose in a little rolling hump along the whole length of the wave.

He nodded and smiled. Took my hand.

He's a sailor, after all. The sea always clears his head of bad memories.


So as far as my treatment goes, I have nothing to report. NOTHING. Not even a start date.

There was a suggestion from one of the receptionists that maybe I'd be starting next Monday or Tuesday, but given the reliability of information thus far, what do you reckon about believing that?

Yeah, that's what I thought, too.

Wednesday, April 24, 2013

The magical mystery arm, and defining 'normal'

Okay, I have got over myself. Please excuse yesterday's mega-vent. Sometimes you just have to let it out to let it go.


Today started considerably better. Maybe the iron tablets are having an effect, or maybe I'm particularly susceptible to the placebo effect, but whatever. The Bear still had to 'encourage' me into consciousness this morning with the verbal equivalent of Chinese water torture (which usually takes the form of repeatedly asking if he can 'get me anything' until I mumble an incoherent answer), but after I'd eased out of my coma-cocoon and into a sitting position, it was relatively easy to get out of bed.

THAT is an improvement. Previously the only way to get me out of the rack before 10am has been to sit on my bladder (thank you, Velcrodog). Or something similar.

I even managed to be showered, dressed, breakfasted, Megwigged and made up in time to drive myself to my late morning physio appointment with Little Miss Sunshine.

(Did you hear that? DRIVE MYSELF. Now, that is a red letter occasion. It's been a long time.)

I even managed to get my head together enough to write myself a shopping list, and I remembered to take it with me.

(Stop laughing.)

Now, don't get too excited yet and start asking me if I'm all better, or I may have to smite you into the middle of next week. I still have a crappy taste in my mouth, a delicate stomach and weirdly numb extremities, just to mention a few of the lingering PIA side effects one has to cope with post-chemo. But what was that Dr Rosie said yesterday? Small steps. I feel like today I took some small steps forward.

And when I got to town, the upward gradient continued. Huzzah!


Miss Sunshine was unusually frazzled when I arrived. The waiting room resembled Wynyard Station at 5.30pm, with more physios than I'd ever seen in residence arriving at the work station and retreating immediately with a patient in tow. Sunshine bundled me into the back room with somewhat indecent haste, apologising profusely for the fact that it was still littered with towels from the last patient.

"It's only Wednesday, but it feels like Friday," she mumbled from underneath a pile of used laundry as she rushed out the door again, clearly a little bewildered and gesturing wildly for me to get myself undressed while she was gone. I smiled as I stripped down to scar and undies and got myself into piece-of-meat position on the table. Presumably everyone made their appointments for today in the hope of a miracle cure for their dodgy knee before the usual sporting and drinking debauchery of Anzac Day, which falls annoyingly on a Thursday this year.

(To my non-Aussie readers: know that most employers will be completely unsurprised by a sudden epidemic of diarrhoea and flu amongst their staff this Friday. If New Zealand's the Land of the Long White Cloud, Oz is the Land of the Long Weekend. Not my line, but it still makes me chuckle.)

She'd calmed down considerably by the time she returned and connected me to her weird Frankensteinish machine, the one that measures the lymph retained in the compromised arm via a complicated system of wires and stick-on terminals on the extremities. Her eyes popped as she saw the reading.

"That's wonderful," she enthused.

"What does it say?" I asked, expecting maybe a 2.

"Minus 1.25," she replied.

Say what?


She did the reading again, just to make sure.

"It's reading .2 better now," she laughed.

And then of course, wanted to know how come my magical mystery arm had come down over 6 points from my last visit.

Here is the truth: since the last visit, I have been on strike. I haven't done my massages properly even once. Or my exercises, for that matter. I've been a complete slack-arse, and I'm rewarded for it with a negative reading? I didn't even know you could have a negative reading. (Apparently it's anything between minus 10 and 10 that's normal, not zero and ten.)

Tell the truth, Candy. What has happened is that every few days, despite my own inaction, my dear Bear has been massaging the fluid in my swollen underarm (which I can barely reach myself) and pulling it away across and down my back. And clearly it's made a huge difference to the efficiency of my lymphatic system as it tries to adjust to new pathways, as well as reducing the swelling where the infection was.

"Has he got calloused hands?" asked Miss Sunshine, still star-struck by the improvement.

"Absolutely. He works outside all day."

"I wish I did. They're so much better for this sort of massage than smooth ones like mine."


Bless that Bear of mine. What would I do without him? (Apart from having a dodgy swollen underarm, of course.)


Mind you, I still have an annoying hard lump under that arm where the scar tissue and lymph seem to have come to some sort of agreement to join forces and piss me off. It means that, although I have excellent shoulder mobility, it hurts like hell to put my arm right up.

(As I pointed out to Sunshine, my 'excellent shoulder mobility' is more about bloody-mindedness than comfort.)

Anyway, then she got out this mini-ultrasound machine and zapped the lump with a bit of internal sound massage. Or something. Buggered if I know how it works, but it certainly softened the lump up a bit. The arm still hurts when it goes all the way up, but maybe if I keep massaging that lump...

...and stop being a slack-arse about my exercises...

...I mean, exactly what do I achieve by sulking and refusing to do my exercises? It's not like it'll make the miserable after-effects of chemo go away. It'll just make the whole experience a damn sight more inconvenient.

Sometimes one just has to combat the inner two-year-old's tantrums with stark logic.


I emerged wearing my virtual star-pupil badge with pride, and happy to be able to hand it on to the Bear when I got home. But before that I had a list of purchases as long as my arm to complete, if I had enough 'spoons' of energy left.

Amazingly, I found I did.

I braved Super-Cheap Auto, which has even less appeal for me than Bunnings, and got the power steering fluid for our other car (NB: before this morning I had No Idea that such a product existed).

I managed lunch at Cafe Cappello (suffer, baby!) before doing the full round of the local op shops and finding everything I needed, including two 'new' shirts for the Bear who has worn all his 'good' shirts to cuff-fraying, collar-parting death. (Bless his recycling-conscious waste-hating heart; he often has to be surgically removed from his old clothes before they fall off him embarrassingly in public.)

I did a slow and careful round of the supermarket, and wasn't deceased by the time I reached the checkout (that's a first) despite having to unpack the trolley myself for the first time in months.

I picked up the turkey food from two different locations on the way back to the Bungy, instead of thinking fuck that, I'm too tired and going straight home.

And yes, I'm tired now, but I'm not totally buggered. I didn't come home and sleep for three hours, like I did after the freezer-buying trip (and I was being chauffeured that day). In fact, I still had the energy to cook and eat dinner.

is progress, isn't it?

Isn't it?


So today has seen an improvement in my quality of life, in a mathematically geometric manner. I'm still not back to normal. I don't know whether I'll ever be normal again. When you've had cancer and start trying to come out the other side, people talk about a 'new normal' that you have to find; I can see that this is true without liking or accepting it at all. Of course, I want to get back to how I was before! Doesn't everyone?

But I've been irrevocably changed by this, and it would be stupid to think that the changes only apply to my body shape. I have different interests, different priorities, and I guess I may have to accept (eventually) that I also have different capabilities.

Certainly in the short term.

And how do I measure 'normal', anyway?

Well, one day I hope to be able to pick up and stack firewood again, while the Bear cuts and splits it. Right now, that's about as likely as waking up on the moon. It's heavy, exhausting work, and it's something we have to do all winter, every winter.

The day I can do that again- yep, that's the day I'll know I'm back to 'normal'.

Tuesday, April 23, 2013

The view from No Man's Land

See, here's the problem.

You get through the chemotherapy, FINALLY, AT LAST. You mark off that last treatment on the calendar, and then you draw a line through each day of the 21-day cycle until you figure it's really over now.

But you still don't feel better. Not really.

Gradually, as the days go by and the longed-for normality refuses to return, you become aware that the poisons that have hopefully seen off the Freeloader's little mates have done some serious damage to your body. Damage that's not going away any time soon.

Your joints still ache. Your fingertips are still numb, and so are the soles of your feet; sometimes it keeps you awake at night. Your scarred armpit pulls and tingles and aches, and you don't know if it's just the chemo messing with your senses, or if the nerves are regrowing at last, or if it's because the infection's returning.

You try to get back to eating real food, instead of flavoured milk and soup and mush. You try to eat some real meat, real fresh vegies with texture and crunch, and your gums are still screaming blue murder afterwards. You try to eat some slightly spicy food, and lie awake all night in agonies of indigestion.

You can't put up with it a moment longer. You go back on the tablets that line your stomach. You feel crushed by that; it's like you lost a battle. You were so looking forward to not having any tablets to take. All you want is to feel normal for a few weeks, before they nuke you.

But normal is a million miles away still. You realise, eventually, that you're damaged; you come to see that you need some sort of recovery programme to try to heal your body.

But suddenly there's nobody there to guide you. You're in No Man's Land, that lonely exposed place between the bottomless trench of chemo and the spattering gunfire of radiotherapy. Nobody is telling you how to deal with this. There's no protocol.

Maybe you should be trying some dietary supplements, or natural therapies- maybe making some lifestyle changes. But you're nervous of doing the wrong thing and counteracting the treatment, or doing too much too soon. You don't want to get engulfed by the gazillion and one bat-shit crazy cancer-curing foods and therapies that pepper your Facebook feed. You wish you'd thought to ask your oncologist about how to proceed at that last appointment, but you were so rapt to be through the chemo that it didn't even cross your mind.

Nor his.

Does it ever cross the oncologist's mind, I wonder, that the patient might need some help recovering from being poisoned?

Nah, didn't think so.


Yet again, it's Dr Rosie to the rescue.

Yes, the iron tablets that Jimmy the Paramedic gave you are a good idea; your last blood test showed you were significantly anaemic. That's probably where your mojo went, the reason you just can't get your head around exercise after all those months of getting on the bike every morning like it was a religion. Your red blood cells are shot to pieces. You're the walking dead.

Yes, you need to be eating good fresh food with lots of vegies; but try not to push the poor digestive system too far too fast. It's had a hell of a horror ride. It'll take some time to recover. Make some vegetable soups...

Soups? screams Ferdinand. Soups? If I even SEE another bowl of soup I'll barf. She's thrown soup at me for five months.

They were thick soups, right? Right. So you just make some broths instead, with chopped vegies in them.

Turkey broth, Ferdi. What about some nice fresh turkey broth?

Hmm... maybe.

You've been poisoned, you see. You can't expect your body to just bounce back. You have to give it time. Rest, and try not to push yourself too hard. Small steps.


But of course, you don't want to take small steps. You want to be better, NOW. You want to get out of No Man's Land before you get shot down again.

Small steps.

You get down on your knees and crawl.

Monday, April 15, 2013

How to offend a cancer patient

I know, I know. The chemo poisons that are still floating around my system are probably making me irritable.

And so are the nasty little side effects that keep springing up to drive me mental, just as I think I'm over it at last.

Like, the indigestion and reflux the moment I try to eat normal food. (Agony.) My doctor friends tell me that gastritis is a common lingering after-effect of chemo, and also of massive doses of antibiotics; oh joy! I hit the jackpot! Looks like I'll be shoring up the share price of Gaviscon and Mylanta for some time yet.

And then there's the hideous pain in my gums after I decided I was ready to eat some solid meat again last night, instead of pureed slops and mince. I had NO sleep, thanks to that little misjudgment. My teeth might be ready, but my soft tissues beg to differ.

I won't even mention the exhaustion. I know that's going to last a long time, and it's only going to be made worse by the radiation therapy that starts on the 30th. But I will say that in trying to get back into the swing of things on the farm, I've found that I can do exactly half the work I used to in the same time- and then I have to collapse and rest.

(I would have collapsed and rested earlier, actually, but I couldn't really leave my Bear with his arm halfway up a dead turkey and with the butchering into convenient freezer-ready cuts still to do. That's my job.)

So, yes, I'm irritable. But I think my fury this morning on reading a fashion blog post about 'how to dress after a mastectomy', written by someone who's never had breast cancer in her life, wasn't just a product of chemo-inspired mood swings. I think it was a seriously offensive article.


Not intentionally, perhaps; when I assess the light and breezy tone of the article, which is par for the course in the fashion world, the words 'catastrophically naiive' come to mind. But I also have a nasty suspicion that some people out there in internet land have realised that the words 'breast cancer' make people click links.

That IS offensive, when someone uses our serious and life-threatening illness to manipulate us and our friends and relatives into heading to a certain web location- only to find an article written by someone who really hasn't a clue, because they haven't been there.

And surely only a complete moron would not realise that you actually need some experience in the field to start talking about prostheses and hair loss and how to deal with your absence of cleavage (not having enough knowledge to talk about mastectomies for long, our blogger soon diverted into other cancer-related areas). I'm not going to put a link to the post that offended me, because I refuse to give a poorly constructed article more web traffic, but I'll quote a little:    

  • "There are many options to cover your hair loss – scarves, turbans and hats. These can be beautiful and fun but look for fabrics that can breathe."

Fun? FUN? Give me a break. The one concern is whether the scarf fabric can 'breathe'? You clearly haven't been there.

Here is what really happens: you lose your hair. You cry for a long time, before and after. You feel weird and ugly, and when you look in the mirror you get a shock- every single time.

You try putting a scarf on when you have to go out, and realise that your head looks weirdly small and flat because there's no hair to puff it out. The scarf doesn't 'cover' your hair loss at all- if anything, it draws attention to it. You go out on the street like that, and people stare at you. You may as well write CANCER PATIENT on your forehead in block capitals.

And turbans? What white Australian wears a turban- except a cancer patient who's lost their hair, or a little old lady trying to cover her alopecia?

Hats? Yes, they can look quite striking once you've come to terms with your bald lower cranium and protruding ears. They don't exactly cover everything either. Sure, the young can rock a crazy hat, and the beautiful can rock any look. Even walking around bald. For the rest, it's just not that damn easy.

Moving right along...

  • "There are also some amazing wigs. Human hair ones might look fantastic but are very expensive. Remember, your hair loss is only temporary. Synthetic wigs are cheaper. These can look nice too and are easy to look after."

There's no mention, of course, that a wig will never, ever look like your own hair- and when you have cancer and lose your hair, all you want is for things to be normal. Including the way you look. Including your hair. You can get used to a wig, sure. But you don't just walk into the wig shop, lay down your credit card and buy happiness.

And as for "Remember, your hair loss is only temporary"? Really? I didn't know! Thank you for that! But guess what? It's no comfort. Not when you just got turned into Yul Brynner against your will, and you can't even blame the Marlboroughs.

And synthetic wigs- 'nice'? Really? 'Nice'. Good grief. Buy a thesaurus, woman.

And at least be honest. Have you tried one on, ever? I know how lucky I was to (eventually) find one I could live with for a year or so of my life. Mostly, they look like someone cut a slit in a child's nylon orangutan and shoved it on your head.

But wait, there's more! Send no money!
  • "Consider cutting your hair short before you start chemo, this will make any hair loss less obvious. There are some hair products to help control and make the most of the remaining hair."
Well, words almost fail me here, which is quite an achievement for that questionable blogger (her name is Rachel Wernicke, just in case she still wants to take credit for what's reproduced on this page in double inverted commas). If you have long, lush hair that you love and consider part of your signature look, a blithe 'cut it off' is hardly helpful. (Also, consider punctuation lessons, Rachel, because that comma really needed to be a semicolon.)

And believe it or not, if you suddenly cut off that long, lush signature hair, people are going to notice. When half or more of it falls out, even if you have short hair and use a metric tonne of 'hair products' every morning, people are going to notice.

Especially you. As Rachel would know, if it had ever happened to her.

But she's left the best till last.
"AND remember, The key to confidence is not to focus in your problem area but to show off your positives. Your breasts are way more obvious to you than to anyone else."
(Head. Desk.)

Okay, I'll take it on board, shall I? Don't focus 'in'- let's make that 'ON'- my 'problem area'.

I'll make sure I don't look down while having a shower, because that way I won't see the bomb site that is my chest, and I'll make sure all mirrors are hung at neck height and above.

I'll stop emphasising the cleavage that I don't have any more, because nobody will notice if the woman who's worn plunging necklines all her life is suddenly in a neck-to-knee fastened at the throat with a brooch (yes, that really was another suggestion).

I'll start wearing tops with ruffles and flamboyant draping (another genuine suggestion), because gee, that's really my style- not to mention really flattering on someone with a single F-cup remaining.

Or not. That's quite enough. I really can't maintain that charade any longer, or the top of my head might blow off.

I'm sorry, Rachel, but you couldn't be more wrong. My breasts have been 'obvious' to everybody since I was about 14, and my 'look' since then has been about trying to make the most of what everyone was looking at anyway. What I have to do now is have a total rethink about the way I dress, and that's hard. Your airy-fairy bandaid suggestions, laid out without a trace of empathy, are not only not helpful- they're plain offensive in their blandness and false assumptions.

And I have a sneaking suspicion that the only people being helped by your blog post, which is no doubt attracting plenty of clicks thanks to the title, are the advertisers on that page. And that's the most offensive thing of all.

Tuesday, April 9, 2013

Dr Mumbles is surprised

I've said it before, and I'll say it again: the worst part is the waiting.

While you feel you're actually doing something to beat the Freeloader, you're pretty well fine. You can throw your nervous energy into coping with your sick chemo tummy, or the nerve pain in your arm, or your daily shoulder exercises. Or whatever.

But when you get to a hiatus between treatments, and somebody suggests it's time for yet another test to see what's happening inside you... whether you're winning...

...that's the worst part. Waiting for the test, imagining all the scenarios. And worse; waiting for the results. That moment when the doctor's mouth opens, and time stops.


The radiotherapy secretary rang me months ago to make today's appointment for a CT scan. She wasn't any more specific than that- just relayed that Professor Power Ranger needed me to have a cat scan before he set up my rads regime.

I filed that away at the time under 'too far away to worry about'. I was flat out coping with the chemo side effects, and April 9th was about as close and relevant to my daily concerns as the moons of Jupiter. But then chemo was over, and April 9th crept closer and closer until it became tomorrow, and then today.

Which, of course, did my head in.

I didn't want to know. I didn't want to have to face the possibility that four months of feeling like crap had been a complete waste of time, because little spots of horror had grown up anyway in vital and indispensable places. My ovaries. My bones. My liver.

It didn't help that I'd told the chemo nurses that my next stop was a CT and a visit to Dr Mumbles, and they'd reinforced the idea in my head that this was a progress report.

"By the time you get to your appointment with Dr Mumbles in the afternoon, he'll be able to access the CT results online," Margaret had offered helpfully.


I DON'T WANT TO KNOW, I bellowed... inside my head.

(Heaven forbid that I let anyone else know I was terrified.)


So the last few days have been characterised by sick apprehension as I thought about the possibility of taking the slippery slide from 'curable' to 'maintenance'. (Yeah, that's the euphemism du jour.) I wasn't ready for that- not at all. Not before I'd even come out from under the black cloud of TAC chemo.

The Bear was sweating it too, of course. You can't hide the nuances from him; he's been here before. He knows the significance of everything that happens to me. He's way ahead of me half the time. Sometimes way too far ahead, charging forward fuelled by a cocktail of fear and ghastly experience. I have to pull him back sometimes, back into today, and remind him who I am and where I am.

Relax. It was all a false alarm. It wasn't that sort of CT scan.


When we got to the hospital the Bear did a kiss-and-drop and went off to hunt for unicorns, which apparently are more common than parking spots. By the time he found one I'd already been swallowed by one of the zillion doors. I guess it spared me having to watch him wait. Probably a mercy.

And I thought of him out there waiting and worrying still as the radiotherapy ladies relieved my mind by explaining exactly what was going on today. I was going to be lying on the scanner for about half an hour so they could render me motionless by various devious means, call Prof PR in to find my treatment spots, which would be lined up using lasers and the CT scanner, and finally tattoo those spots to preserve them for posterity.

No injected dye. No 'metallic taste followed by sensation of wetting your pants'. It wasn't that sort of CT scan.

WHY, I asked myself, WHY didn't the secretary make that clear when she made the appointment?

Because she's never had cancer herself, said a little voice in my head.

Probably true. You just don't realise the stress these things can cause unless you've been there, or someone's taken the time to gently rub your nose in it.



Even after I'd had My First Tattoo (OUCH, some people get a kick out of this? Seriously?), it would be a little while until I could relieve the Bear's mind. I was sent on to the radiotherapy nurse, who gave me the twenty-questions regime on how I was coping right now. It was the second twenty-questions in the last hour; I'd managed to crack up the rads staff completely with my answers to theirs.

"We ask you these questions once a week during your treatment, so we can monitor how you're going," began Rads Sweetie 1. "So how are you feeling right now, with regards to fatigue?"

"Like crap."


"And have you noticed any changes of mood?"

"Yes, I'm a total bitch."

(Rads staff fall about)


Fast forward three quarters of an hour.

"We ask you these questions once a week during your treatment, so we can monitor how you're going," explained the nurse.

I was starting to get a severe sense of deja vu. Fortunately the questions were expressed in a marginally different way, or I may have started looking for groundhogs popping out of the walls.

"So- fatigue. How are you coping with everyday tasks like housework?"

I cackled derisively.

"I'm not. I'm hopeless. Exhausted all the time. I don't even make it all the way through the day without a sleep. Thank heavens I've got a partner who fills in the blanks."

Ain't that the truth.


By the end of our interview, I was relieved to find that the Bear's method of dealing with radiotherapy burns was totally accepted in the mainstream.

"Bring an aloe vera leaf with you," suggested the nurse, "because it's wonderful for taking the heat out of the site immediately. The moment you get off the table and go to get dressed, apply the jelly all over the treated area. Then after half an hour add a thick coat of sorbolene cream over the top. Do the same at night before you go to bed- aloe vera, then sorbolene half an hour later."

"Can I use Moo Goo instead of sorbolene?"

"Oh, that's become very popular in Queensland- yes, that's a good product. I'll give you a tube of sorbolene anyway, but you can use either."

It's always nice to know that what you fully intended to do from the start won't cause any ripples. Aloe vera is a miracle cure for just about everything in the Bear's books. And when it comes to radiotherapy burns, he should know; he's been here before.


We had over two hours to kill before we saw Mumbles, so I hijacked the Bear into a day trip to the coast. It wasn't hard once I mentioned the magic word 'Shawsy's', a favourite pub of his which nestles on the water's edge at Shaw's Bay. We've run away there before in times of stress. The Bear definitely needed an attitude adjuster after the morning's lows and highs, and I wanted to test my alcohol tolerance. I haven't had a drink since way before chemo started- just didn't fancy it before, and Ferdinand had told me over and over that he was teetotal.

Until today, anyway, when I think he must have hit his teens.

Tia Maria and milk, he wheedled.

Are you dinkum?

Would I lie to you?


He stuck out his bottom lip then, so I ordered his tipple of choice in a long glass (the more milk the better, I figured) and prayed that he wasn't setting me up for a fall again.

He wasn't. Yay for Tia Maria and Coopers by the water, and for watching distant rain fall on someone else for a change.


We just had time for barramundi and chips at the Fisherman's Co-op (I told you, I'm going to say YES to myself more because of all this) before heading back to the Mumblatorium. To my amazement, Mumbles had already been cremated and we were greeted by a sparkling Dr Mellow in fine form.

Another session of twenty-questions ensued. No, my fingernails are not displaying any new and worrying features other than changing colour (guffaw).Yes, I've finished my course of antibiotics and my armpit is fine (confirmed). No, this is not a new wig, though I suspect you didn't even recognise me the first time you saw me wearing it (smirk).

Huh? That wasn't a medical question.

And so on.

To cut a half-hour story short, I got lots of ticks and no crosses, and half of Mellow's time was spent buttering up the Bear with stories of his own humiliation at the hands of two electric fences whilst helping a neighbour muster cattle. (No, Mellow, it's not a good idea to hang on to an electric fence with each hand whilst standing in a puddle of water. Cackle.)

And at one stage, he looked down at his notes almost with disbelief.

"You've done it," he said, and there was definitely a level of surprise in the tone. "Six rounds of TAC, and you got through them. And you're really well. That's great. Well done."

Shaking his head in amazement. It seems he expected me to crack- expected to have to adjust the dose because I was too sick, or to have to change the drugs halfway through because I couldn't tolerate the mix. He warned me from the start that TAC was the toughest regime.

But I told him something at the start, too, and I reminded him of it right then. With a twinkle. Because nobody ever quite believes me when I say it, till they test me. I look utterly like a girl, and those who don't know me usually expect me to be girly. Right down to being a bit of a wimp sometimes, when the heat's on.

Wimpy? I don't think so.

"I told you I was tough," I said.

Saturday, April 6, 2013

The impatient patient

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

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



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

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

There may be a grain of truth there.

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

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

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

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

Good luck working that one out, psyche.

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

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

It's increasingly hard to bear.


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

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

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

Yep, the last round is the worst for sure.


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

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

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


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

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

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

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

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

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

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

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

Sound familiar?

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

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

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

But I digress.


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

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

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

Note to self: chemotherapy causes delusions.

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

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

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

Still clinging to the fantasy.

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

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

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

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

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

We found it.

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

It took forever.


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

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

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

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

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


1) I WILL get my momentum back.

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

3) I WILL eat without severe pain.

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

5) I WILL stay awake all day.

Oh, and

6) I WILL beat this fucking disease.

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