Wednesday, October 31, 2012

It's not that simple after all

I just got the pathology results back, and the news is not good. Sorry, guys. I know you were all hoping for better.

I, on the other hand, always had a feeling it wasn't going to be simple. My gut feelings are usually pretty accurate, and I never really believed that the mammoplasty was a get-out-of-jail card. If you read my last blog post carefully, you would have noticed that it didn't exactly end full of joy and hope. I'm okay, though, because I was ready for this.

At some weird level, I've felt like I have an important job to do here, documenting every goddamned cruel thing this goddamned ugly disease has to throw at us. And so I just did not believe my journey was over already, so easily. The job doesn't feel finished. I still have work to do.

When the phone rang this morning I actually answered it, because my gut said it was Dr Goodguy bearing the bad tidings (and there was no way I was letting the Bear take that call). The tone of Dr G's voice was enough to confirm my suspicions, well before he actually said anything important.

I won't leave you in suspense any longer: No, I have not taken the count and I am not about to throw in the towel, but the fight's going to get ugly from here. I do have to have more surgery; I do have to have the old-fashioned radical treatment, in case of spread.

You've got to hand it to the Freeloader; he's been busy, for a little guy. Nothing wrong with his work ethic! When they chopped him out, there was only 16mm of him. But boy, had he done the housework.

He didn't just make up beds for all his mates to come and stay in the 'east wing'. The whole damn sample that was cut out of my breast last Monday, a third of the breast taken right down to the nipple, was polluted with little pre-cancerous spots. It was like an army bunkhouse in there.

They weren't actual tumours, mind you. The invasive stuff has been ejected- that's the good news. (A pity that, on analysis of the Freeloader, it looked like the aliens had landed in my breast; he's been reclassified grade III abnormality.) But it's very likely, given those results, that the whole breast has already been prepared for further Freeloader action in the near future.

So the whole breast has to go. Bye bye, baby. So sorry you didn't get a chance for a proper encore; you were almost looking pretty again already.

(I will cry about that later. Maybe. Right now I am far too busy being informative and padding the pathos with black humour. Let me do it my way, please.)

And there's more (send no money, we will bill you). Not satisfied with that little coup, the Freeloader had also got little samples of himself wedged into half a dozen nodes.

Now, let's not despair here (are you listening? DON'T DESPAIR!). It's completely possible that Dr Goodguy successfully removed all the affected nodes. 

(Yes, we do have to hope they hadn't sent out any party invitations into my bloodstream yet; if you're the praying type, that's your cue.)

But it's also possible that there might be a couple of stray compromised nodes further up in my armpit. Are we gambling on that? No, we are not. They all have to go.

As I said to Dr G, "My family doesn't survive cancer diagnoses. We need the big guns."

That was in his office at lunchtime; I'd driven myself into town after he rang me, less than three days post-op, so I could get all this information completely straight in my head. I grabbed my appointment bag and my phone and my painkillers and my little pillow for my arm, and just went.

Don't ask me how I did that drive. It's just what I needed to do. The Bear was in no state to drive me; I was much safer going alone. You just don't know what you can do, until you have to. People run away from explosive situations on broken legs. People lift cars to release trapped children. I was running on 100% adrenaline, and I got to town and back without fainting or falling asleep.

Hold that thought: You just don't know what you can do, until you have to. 

Anyway, Dr G agreed 100%. Big guns it is. All the nodes have to go too. Bye bye, outbuildings. Hello, screwed-up lymphatic function.

And hello chemo. Oh, joy- oh, rapture; I get to test drive how strong my stomach really is. (Seriously, I have a cast-iron stomach. I almost never throw up. This is going to be a bit of a battle of wills, methinks.)

That is what's doing the Bear's head in- the thought of watching me go through chemo.  Once was a nightmare. Twice was torture. Three times? There isn't even a word for having to hold a loved one's hand through chemo for the third time in a lifetime.

That is So. Fucking. Unfair.

NB1: I'm not sad or despairing; I'm bloody angry.

NB2: I do not enjoy being nauseated. I am going to be looking for solutions. And I don't give a damn whether the solutions are legal or not.

Just sayin'.

Oh, and NB3: hair schmair. I'll get a friggin' wig. Or you'll have to learn to love my bumpy skull. Whatever.

Moving right along...

...because of those goddamned nodes, the chemo will probably be followed by radiotherapy. Oh, joy- oh, rapture; I get to feel what it's like to have my chest cooked by degrees. (MasterChef for cannibals. Or something.) Hello, nuclear-grade burns.

The aloe vera pups are already planted. The Bear did that last weekend. I'll be looking for the Moo Goo that my friends on the Breast Cancer Forum recommend. And I think I'll start thanking my lucky stars now that I inherited my father's Polynesian skin rather than my mother's touch of Irish; hopefully I'll burn less easily.

NB4: If that impression's wrong, just shut up, okay? I don't need to be disillusioned about that till it happens.

So there you have it; the news from Hell. In an attempt to pre-empt any more little surprises, I'll be having a bone scan tomorrow. I'm holding the thought that there's no reason to think that the bone scan will light me up with alien invaders any more than the CAT scan did, but I'm SO not looking forward to waiting for more results.

Enough tests, already; I know. Maybe I should be ducking my head, acting positive and pretending there's no chance of the invasion already being a fait accompli. But that's not the way I deal with stuff; I need to know ASAP whether this is a fight I can win, or as Dr Goodguy put it, a situation where we "manage the disease rather than cure it". I need to keep looking it in the eye, to stay on top of things.

The Bear looked me in the eye when I came back from town, and started telling me all the things he loved about me that cancer can't take away. My eyes. My nose. My laugh. And so on. I am not just a pair of breasts to him. (Let alone just an armpit. Ew.)

Maybe he's not coping with the practicalities, but don't judge him for that. He's a champion with the feelings. To me, that's more important. It's cruelly unlucky for him that he loves me right now, but damn, it's so lucky for me that he does.

It's so not fair on him. Honestly, I feel like going out and throwing rocks at stained glass windows. Nobody really deserves a cancer experience- I know that- but he deserves another one less than anyone else in the whole goddamned world. He barely came back from the brink after the last one.

Don't forget to breathe, Candy.

(Inhales. Exhales.)

And while we're talking about luck: as 'luck' would have it, my dear friend Jools just happens to be in Brisbane today instead of Melbourne. I called her the moment I realised the Bear was in meltdown. So she's coming down tonight to stay with us, to help us get through the next little while.

(Like, the bone scan.)

We've been friends for over 40 years. She's having a tough time with this, too. We need each other right now. We're lucky to have each other as we go through this.

And you know, I'm so damn lucky that I can write about this. You wouldn't believe how much it helps me make sense of things- it's my do-it-yourself therapy. Things have never been simple for me, really, and in a strange way I enjoy unwinding the complexity so that it ends up on the page. I can remember once explaining to my son that I'd probably stayed in a bad relationship far too long because it was good for my creativity. Weird, right? Not really. Complex situations are what a writer thrives on.

So at the end of the sort of day that would make some people feel like throwing themselves in the river three times and coming up twice, I just sit here and write it out. And feel much, much better for doing it.

Oh, and you're an important part of that 'feeling better'. Every writer needs an audience. Thanks for reading.

Tuesday, October 30, 2012

Eviction Day

Is there anyone in the whole world who sleeps well the night before going into hospital for surgery?

(Nah, didn't think so.)

Of course if you happen to have cancer, that's when all the old doubts- the ones that you've just about staved off by now, thanks to positive thinking and the support of wonderful friends and family- will come back to assail you. The twinge in your left elbow, the numbness and tingling in your left little finger are indications that you'll wake up after surgery and discover that they've amputated not just your whole left breast, but your cancer-riddled left arm as well.

Seriously. In the middle of the night, that crazy stuff can seem possible, no matter how many times you tell yourself that you've just cramped your ulnar nerve by lying with your arm in a weird position.

That's what's so wearing about cancer. You're all waiting to hear how I got on in surgery, like it's the answer maybe- but the truth is that many, many question marks are still there. They'll be there for days, months, years.

And where there are question marks, sheer terror will sometimes walk right in the door uninvited. My door, and the doors of the people who love me.


The Bear and I were both wide awake by 4am yesterday, lying there holding hands and listening to the birds building up the layers of their morning chorale. There's one soft-voiced singer who starts it off, well before the sun comes up, with a sweet little 'chiu, chiu'. Many a night I've lain awake waiting to hear that dear little bird tell me that daylight and sanity are on their way.

Those morning moments are such a precious part of living in the forest. It's hard to start the day in anything but a good mood when you've been gently serenaded awake by nature. It's hard to be pessimistic once that little bird starts its morning song.

But yesterday, of course, our glorious reverie was cut short by the musical sacrilege of Mozart's 40th performed on buzz saw and garbage bin lid (or something), courtesy of my mobile phone alarm. I find that the best way to ensure I actually get up is to select the most hideous Muzak abuse of the classics I can find, as anything but a wide-awake selection of the correct soft key to turn it off will result in an encore ten minutes later. Getting up is bad enough without also choking on my coffee.

So we stumbled out of bed, stumbled through our morning routine, stumbled into the car. Got to the hospital by 8.


Completed paperwork.


Eventually I was hustled away to have the Freeloader shot full of radioactive isotopes, so he could have a glow-in-the-dark picture taken for Hallowe'en. Or something like that.

Actually, the theory was that if they injected him with this wonderful stuff (which is so bloody dangerous that much fuss was made about washing it off my skin lest I carelessly nuked any passing children), it would seep down to the appropriate lymph glands. Then they'd shove me into another space-age camera (this one a cross between a sandwich press and a blender) and the pictures would tell Dr Goodguy which nodes to remove.

An hour of claustrophobia and rotor rides later (not to mention more waiting for my poor Bear), they'd worked out that the Freeloader wasn't co-operating. He wasn't going to give us any hints. (Bastard.)

So we changed floors and waited some more.

Got my blood pressure checked. Tick.

Heart. Tick.

Height and weight. Cringe. 

More paperwork. Yawn.

Got fitted for granny stockings to prevent blood clots. Ew. 

Got outfitted in my designer theatre garb. Bleaugh. 

Feeling ugly and old, thanks to the sheer hideousness of the outfit, wasn't helping me. Neither was feeling cold. A kind nurse brought me a heated blanket.

Say what?

Yes, a heated blanket.

(This hospital's not too bad, really.)


There was going to be a lot of waiting, again. And a lot of paperwork. And a hell of a lot of very, very bad daytime TV. (Excuse the tautology.) If the cancer doesn't destroy your peace of mind while you wait, The Morning Show will.

We waited.

And waited.

A little after midday I sent the Bear home. He was getting rabbit-in-the-headlights eyes, twitching slightly whenever a doctor walked past and growling impatiently at the truly atrocious Midday Movie. Put Sex and the City and The Sixth Sense in a blender, and you get Charlotte seeing dead people. Wow, there's a plot.

I figured we'd both do better if he got back into his comfort zone at home and I stopped worrying about him getting freaked out by deja vu, vu, vu. He kissed me about a million times and skedaddled, obviously relieved.

By 3pm, a kindly nurse had realised that some sort of explanation was in order. No, Dr Goodguy wasn't sitting at the bar enjoying a long cool daquiri between ops; in fact he was dealing with the patient listed before me, who'd developed major complications on the table.

I was taken to the theatre anteroom at 5pm. (Yep, that's right. 5 pm.) And that was an optimistic move by the team, because the drama was continuing on the other side of the flip-flop doors. But it was actually a good place to be for this impatient patient; it gave me a reality check.

I looked around at the wall-to-wall supplies of disposables, remembering yet again how damn lucky I was. Lucky to live in a first world country. Lucky to have got breast cancer at a time when so much progress has been made towards treating it effectively. Lucky that other women have trodden this path before me, so that doctors now treat the whole woman rather than just the disease.

Lucky, too, that the extended wait gave me ample opportunity to talk to the anaesthetist about my locked-in experience last time. That talk, my friends, was fab. I don't know where St Vincent's found this team, but they are amazing; yet again, I had a doctor treat me like an intelligent human being.

Dr Drowsy was quick to pick up on my anxiety, thorough in his investigation of how it had happened, sincere in his attempts to reassure me. He went through the side effects of all the drugs he was going to use; he ran some alternatives by me, adjusting his thinking as asked me more questions and reflected on my answers. I felt like a partner in the experience, not a problem on a trolley. Applause for that man.

And then, bless him, he slipped a cool Mickey Finn in my drip to help pass the time before he went back to check on the extended drama in theatre. I lay back and relaxed. Accepted that I was just going to have to go with the flow, again.

An hour later, when he came back out to prep me up for real, he told me the name of every drug he was putting into my drip and he told me what each one was for. That doctor is a keeper. That is the anaesthetist worth shopping around for, the one you want knocking you out when you have a serious illness.

I didn't get into theatre till after 7.30pm. (I'd been fasting since 7am; who needs Jenny Craig when you can just be next on the surgery list after a total catastrophe?) And you think I'd had a long day? What about poor Dr Goodguy? I didn't get out of that theatre till around 10.30, and I wasn't the one up on my feet trying to delicately snip away human tissue and then sew the holes up with minute stitches.

In there, I was knocked out before they turned me into a smurf. That was a little disappointing; I'd rather fancied taking a picture of myself dyed blue from top to toe and posting it on Facebook to contrast with all those pink profile shots. Never mind; the blue dye did its job where the isotopes hadn't, and showed up seven lymph nodes terminating the Freeloader's plumbing system.

Seven was a bit of a disappointing number. We'd been hoping for less than that. I'm suspecting that seven might mean I'm in for chemo, but I may be jumping the gun; I really should wait for the pathology before I say things like that. Dr Goodguy told me quite clearly that seven blue nodes doesn't necessarily mean seven cancerous nodes. But it's hard not to jump ahead.

As for the anaesthetic- I woke up quite suddenly and pretty much in full possession of all my senses, as though I'd just had a nice refreshing sleep. It was awesome. Thanks, Dr Drowsy. I'll pay your account quite happily.

So where to from here?

Radiotherapy, the breast care nurse tells me, is pretty much a given. It's just a matter of whether the pathology shows that I need chemo first. Or, heaven forbid, further surgery first. Dr Goodguy couldn't guarantee that he'd removed all of the calcification; it's not an exact art. We can't know whether there are cancerous cells in the margins of what was removed until the samples have been checked out at close range by experts. I won't know any of that for at least three days.

And looking at my newly reconstructed breast, I'm hoping like hell the whole thing doesn't have to go, because Dr Goodguy's done a terrific job. Unbelievably, I still have sensation in the nipple, despite it being relocated. I've lost a bit of sensation along the underside of my arm, but that's not exactly a big deal. Yes, I'm in a bit of pain where the nodes were removed, but Dr Drowsy impressed upon me that my job is to be a total wuss and take adequate pain relief for the acute pain now- which apparently helps prevent chronic pain later. (Don't ask me how that works; I have No Idea.)

So for now, my job is to rest here at home, recuperate and- play the piano. That's a great way of keeping the lymphatic system working properly in my arm, I'm told. Music has become my friend again over the last few months; for too many years now, since I stopped teaching music five days a week, it's taken a seat so far back in my life that I've gone weeks without playing or listening to anything at all. (Hard to believe, I know, for those of you who knew me in my 'past life'.)

The iPod saved my sanity when I came back to my hospital room at 11.30pm after surgery, too late to phone-a-friend because the switchboard had closed. I was feeling very alone, in pain and probably a little shocked by that number seven. I admit to a little weeping then. Tchaikowsky, Mendelssohn, Brahms, Britten and Dvorak eventually allowed me to get a little restless sleep; each time I woke to some hospital crash or city beep, the familiar old favourites would lull me back to tranquility.

And tonight I'm listening to the music of rain on the roof, after far too many weeks of none. If this keeps up, there'll be enough water in the tank for me to enjoy another hot bath or two if I'm getting too wound up about waiting for results.

If? Who am I kidding? When I'm getting too wound up about waiting for results. I'm still trying to look things in the eye. I've envisaged myself losing this miraculously resurrected breast. I've envisaged myself having chemo. I've acknowledged that these are not the worst things that can happen, that they might be what has to happen to save my life. I spend a lot of time counting my blessings so far.

But Eviction Day for the Freeloader doesn't mean it's over- not by a long shot.

Friday, October 26, 2012

Packing it, and other side effects they don't tell you about

It's a long, long time since I packed a bag to go to hospital. The lump that was removed on that occasion is now 27 years old, happily married and gainfully employed, so that medical procedure could be deemed a success (despite some less than happy moments at the start- don't start me on obstetricians with God complexes, please.)

The time before was less happy. I've been reminiscing about that, and not in a good way, as I desperately try to find suitable clothing to pack for my hospital visit on Monday. My wardrobe these days is, um, "very Northern Rivers", to quote the Bear. It doesn't involve much in the way of summer bed wear.

It certainly doesn't involve bed wear that buttons at the front for easy access to my restructured left hand side, as recommended by the housebrick-like tome that arrived in the post yesterday from BCNA. I might be 56, but baby, I ain't no nanna yet. Button-front nighties? Bed jackets, FFS? I don't think so. Actually, I think and dress a little younger than that.

<sarcasm alert>

I wish I'd thought of this when I was in town last week. I could have picked up something suitable at the op shop.

Oh, except that going to town over the last two weeks or so has resulted in an immediate urgent desire to go home again. NOW. And bugger the shopping. I'm sort of coping in my own environment, but I'm definitely NOT coping when I'm away from home.

That's unexpected. I usually enjoy my trips to town, especially if I have some gold coins in my pocket and the op shops are beckoning. Nobody told me I was about to become agoraphobic.

I mean, right now even the traffic sends me nuts. I'm not talking Sydney gridlock here. I'm talking waiting behind two cars at a country town roundabout. I'm usually so laid back, the most patient of drivers, but now the tiniest thing sends me crazy. I can feel my blood pressure rising even when nothing annoying is happening.

I just want to go home. I don't want to be anywhere else but home. Click those ruby heels and beam me up, Scotty.

Yeah, yeah, I may have confused my allusions for a moment there. Call it another side effect of having my life turned inside out.


So as I rummage through my drawers looking for something to adapt, because I'm buggered if I'm going back to town if I can possibly avoid it, my mind keeps going back to that old hospital visit. Oh, the operation went just fine; it was a simple tonsillectomy, performed when I was 20. But I still have nightmares about one moment along the way, and dammit, that's what's coming back to haunt me now.

Have you heard of 'locked-in syndrome'? That's the terrifying condition where you are fully conscious but completely paralysed. You can neither move nor communicate. And that's what happened to me as I woke from the anaesthetic last time.

Nobody told me that might happen.

It was just a small taste of hell, of course- just a slightly glitchy response to the anaesthetic thanks to my super-sensitive body. FFS, even antihistamine tablets put me into a coma. Once I took two Dimetapp nighttime cold tablets, the recommended dose, and couldn't be woken for 36 hours.

So way back then, my brain woke up but my body didn't. The unspeakable terror of being shut in- if you haven't experienced it, you probably can't even imagine it. It was claustrophobia on steroids. It was silent screaming, and overwhelming panic.

Eventually, after what seemed like a year but was probably five minutes, I managed to push enough air through my vocal cords to moan softly. Then a nurse noticed me, and started fussing around me and talking me through it, and I managed to move my eyelids and then my lips and I realised that maybe I wasn't doomed to be the living dead for the rest of my life after all.

But I still remember that five minutes.

So I'm not actually afraid of the operation itself. I'm not afraid of being put to sleep and cut up with sharp knives and sewn back together with large needles. But I'm terrified, beside myself with panic at the thought of waking up like that again.

It probably didn't help that the anaesthetist decided to put off my interview with him until I've been admitted. I have to have a serious talk with that man, and I don't want him to be in a hurry or dismissive of my concerns. I don't want to be written off as neurotic. It's easy to be cowed by confident professionals when you're out of your home territory, anxious as hell and not even dressed your normal way. Hell's bells, half my confidence relies on my makeup and jewellery- oh yeah, and my cleavage, FFS. Don't forget the cleavage.


Somehow I need to get past all that when I arrive unpowdered, unpreened and un-even-frickin'-deodorised to get my (in)famous cleavage rearranged to hell, and impress on him that the after-effects of his drugs matter.

Wish me luck.


Most of the time it's been business as usual at home. On the surface, I'm a trooper. I might be sitting at the computer a little more than usual, I might be playing more mindless games than usual, my diet might have gone to hell in a handcart (or perhaps  'in a chocolate box' would be more honest), but mostly I'm trying to keep things normal.

Well, other than not answering the damn phone till the answering machine tells me who it is. Even with the veto in place, the stupid thing still seems to ring far too often. God help me if I'd just let it all happen, instead of directing people here for information. I'd probably have ripped the line out of the socket by now.

It's hard being a model patient. Being human and fallible keeps getting in the way. I admit, I may be feeling a little snarky.

Okay, a lot snarky. The Bear and I had a raging row the other night, a screaming one, and we never argue like that. We just don't. I can't even remember what it was about, it was so completely stupid. I doubt he can either. When they list the side impacts of a cancer diagnosis, why don't they include 'stupid snarky rows about nothing'? Hmmm? Some days it's like tiptoeing through a paddock full of echidnas in the dark, never knowing when you're going to walk on the other person's spikes.

I mean, the two of us do actually love each other and do our damnedest not to say hurtful things to each other, ever. Heaven help anyone who had a lesser relationship waiting at home when they got their diagnosis. For some couples, diagnosis must be like falling out of a skyscraper window onto barbed wire. Cancer doesn't always bring out the best in people, you know. You want it to, but it just doesn't. Sometimes it just makes you both impatient, and hypersensitive, and totally sucky things like that.

Sometimes you just want to disappear into the computer and never come out again, eating chocolate all the way (guilty as charged), or have a gazillion drinks more than is good for you (no prizes for guessing who).

And sometimes, if you're actually in the right relationship when this bastard of a thing gets you, in between walking on each other's spines and coping completely inappropriately, you find a tremendous intimacy that you'd just about lost track of in your day-to-day life before this hit you like a brick from the sky. Sometimes you lie there wrapped around each other at night, or just holding hands in the morning, saying to each other third time lucky.


Over and over, like that'll fix it. It fills in the time while you wait for Monday.

Third time lucky.

I don't mind that side effect at all.

Wednesday, October 24, 2012

On being selfish

Cancer, people tell me, means I need to change the way I view the world. Now that I have cancer, people tell me, it's all about me. I need to stop worrying about everyone else, and focus exclusively on myself.

In other words, it's okay to be selfish.

I'm having a bit of a problem getting my head around that one. Oh sure, I've dropped out of several time-consuming activities I was involved in; I've let go of some peripheral people in my life, whose needs were beyond what I could offer them right now. But that's as far as I'll go with this selfish thing.

See, the trouble is, the wheels of the world don't stop turning when you get diagnosed with cancer, and the people around you don't stop having emotions, and to shut yourself off from all that static and white noise you'd have to hide in a cave and roll a rock across the mouth. 

(And presumably emerge later unscathed, like Jesus. Or not.)

All around you, life is desperately trying to chug along as though nothing happened, and the people who care about you are hitting brick walls left right and centre and bouncing off bruised and broken. Instead of clicking into the works and travelling along as a functional part of your community, you find yourself identifying as the random spanner dropped without warning into everyone's agenda.

I see that I'm that spanner. I need to make sense of that, and I need to somehow make the shared experience of my cancer transcend chaos.

Twenty five years ago, when my mother was diagnosed with terminal cancer, I saw and I felt what happens when access is denied- when the experience is wrapped around the sufferer alone, and nobody else has their needs met or their emotions accepted, and acknowledged, and dealt with. 

It's not pretty. It's not kind. The fallout lasts for years.

My friends and my family need to take part in this experience, even if that sometimes makes things a bit tricky for me. Being shut out because it's too hard for the sufferer is just not an option, because I know what that feels like. I was, at a very deep level, shut out of my mother's experience by my father. Information was not shared. Comfort was not offered. Participation was not allowed- not even in her funeral, FFS. 

That was a deeply scarring experience for me. I will not allow that to happen to my friends and family.

Everyone has their own stuff to deal with around my illness, and much as I'd like to be a hermit in a cave until this is over, I know that seeing me is part of dealing with it. Face to face, the inner circle of people who care about me can reassure themselves that I haven't suddenly been transformed into the cliche of the cancer victim- gaunt, pasty-faced, defeated. Seeing me is necessary to give them hope.

Take my son and my partner. Face it- they don't get on. One's a man of words, the other's a man of deeds, and they simply don't get each other at all. They're separated by culture, genetic makeup, vastly different life experiences and a massive generation gap. They've had words in the past; they've come close to blows. 

They both love me to bits.

Last week they managed to put their differences aside so that my son could visit me. Setting that up was not without tension for me. I had to have clear and direct words with each of them. I had to set some boundaries. Even just the prospect of a visit from the Grim Reaper can bring out the absolute worst in families; I'm not the first person who's had to juggle sensibilities from a sick bed, and I won't be the last.

Did I want to do it? Of course not. I wanted to lie back and let them sort it out for themselves. Or not. I had test results to worry about, and I had the prospect of being chopped open to consider. In fantasy land, my partner would have floated out the door ten minutes before my son floated in, and everything would have been lovely without me lifting a finger.

As if.

Thankfully, they both were the very best person they could be for those few days. And that gives me hope that they'll maintain civility in the future. But I had to prepare the ground to achieve that- there was no way I could have dodged the tricky conversations. 

It's not all about me. I can't just lie here and ignore everyone's feelings. If things go wrong, I don't want to leave a minefield behind me. That's a terrible legacy.

For my son, it's the first time my mortality has thrust its ugly face into his field of vision. It's confronting. Nobody in the world loves you as unconditionally as your mother does, and it's not until the connection threatens to be severed that the magnitude of losing your mother hits you in the face with a chair. My son needed to look me in the eye and reassure himself that I wasn't out of here yet.

For my partner, it's the third time round, and he's sitting on a powder keg of old hurts. The last thing he needed right now was to have to play nice in his own home. He does just want to sit in a cave, with me, and howl. What he needed to cope with this visit was to see my son's experience through his own eyes- to be taken back to when his own mother was diagnosed, and find his compassion for someone other than me. 

And bless him, he did manage to do that, with me holding his hand.

That's just the people closest to me. There are scads of others who just want to look me in the eye too, once they've mastered their own shock enough to face the reality of the situation. I will receive them as graciously as I can. I'm part of their journey, just as they have been part of mine. My personal responsibility for others' welfare didn't evaporate when Dr Adnan opened his mouth to tell me the test results. 

If anything, I have an increased responsibility to clear the way for my loved ones, for as long as I can. The Freeloader has given me a flashlight as well as pits of darkness. It would be churlish not to shine it on the path.

It's not all about me. Other people's stuff matters too, and I can't- I won't- be selfish about that.

Saturday, October 20, 2012

Saying goodbye

It was when the train pulled into the station that I realised the tears were gathering. I sniffed and blinked them away, wishing my sunglasses weren't still sitting on the dashboard of my car. I hugged my son hard and then watched him make his way to seat 49, making silly faces at him through the smoked glass window of the XPT as we waited for the guard to wave her flag.

And then the brakes sighed, and the train slid past and disappeared across the bridge, and I sat down on the faded blue bench and gave in.

I didn't have the least idea why I was crying. It wasn't, overtly, about saying goodbye to my only child. He would be back whenever I needed him. And it wasn't, overtly, about the Freeloader and the emotional strains of the last few weeks. I'd been looking those stresses in the eye and downloading them- onto my friends, onto my doctors or onto my blog- very effectively since the whole thing started, dealing with the unwelcome changes in my life the best way I knew how.

The thought that I didn't know what it was about was enough to dry this thinker's tears for a while. Analysis took over, walking silently by my side through the supermarket as I picked up the few things I needed in town. It wasn't about anything I'd felt before during this crazy journey- I knew that much; it was some weird new facet of my cancer experience that had somehow been triggered by saying goodbye to my son.

I was back in the car and halfway home before I nailed it. When I did, the tears came back again, as if to confirm my thoughts.

The next time I see my son, I'll be changed irrevocably.

Sure, I'll still have two breasts if all goes to plan, but they won't be the ones I started with. They won't be the ones I've travelled with thus far. By tomorrow week, I'll have to say goodbye to the body shape that's aroused such mixed feelings in me during the forty-odd years since I hit puberty.

A woman's relationship with her breasts is intensely personal, and immensely complicated. What with arousing men's sexual feelings (sometimes unwelcomely), maintaining a balance for ourselves between allure and modesty (and being judged on it), feeding babies (or not) and trying to look 'right' in fashionable clothes (regardless of what shape we've been landed with in the genetic lucky dip), our heads can end up in a total mess.

Whip one of those breasts off, or as in my case, remodel it with a resultant change of size and loss of sensitivity, and there's a Pandora's box of emotional fallout to navigate. This is where I found myself today, as my 'baby' disappeared into the distance.

It's fraught. It's confusing. Even today, I stumble a little on the word 'breast'. I remember the terrible difficulty my mother had in talking about her own mother's illness; as a child, I was told that my grandmother had died because she'd broken a rib when the bus stopped and not gone to the doctor. It was a complex tale my mother wove, one that was carefully told and consistently guarded.

Somehow, to my mother, breasts were to shameful to talk about. I would still have no idea that breast cancer was in the family if I hadn't heard her telling her own oncologist about it some twenty years later. I don't blame her for that; she was a product of her time and her upbringing.

But me? I still think twice before even using the word in public. Who am I with? Will I offend them? Will they be embarrassed?

To tell the truth, my breasts have been a pretty constant source of embarrassment to me. Even Dr Goodguy, inspecting my problem for the first time, observed at once that they were so large as to be a hindrance.

"Do you hate them?" he asked, surprisingly I thought.

Perceptively, though.

"Yes," I replied at once.

And then rescinded a little.

"Maybe hate's the wrong word. They're terribly inconvenient."

But now, as I look now back at the history of my complex relationship with these large and cumbersome breasts, I'm seeing beyond their mere inconvenience and starting to grieve for what I'm losing here. For all the times I've cursed them, these breasts have actually done exactly what they were supposed to do.

Yes, sure, I've never been able to wear shoestring straps and strapless gowns (and you know, that mattered when I was young- too young to dress like a matron amongst bridesmaids).

Yes, it's true, I've never been able to exercise vigorously for fear of knocking myself out. (Seriously, guys, it hurts).

Yes, absolutely, I got well and truly tired of the wolf whistles from building sites (oh, to have been brave enough to respond what's up mate, lost your dog?) and the once-over glances at parties (you know, the ones that always stopped just below my chin).

But the truth is that these breasts have always performed exactly the way nature intended them to. When I was pregnant, they let me know it, but not so harshly as to make me yelp. When I started to breastfeed, they performed so perfectly that I still look at some horrific parenting discussion threads- cracked nipples, abscesses, mastitis, flow problems, leakage, insufficient supply- with total wonder.

I never had any of that. Not for a single moment. I never had to sterilise a bottle in the middle of the night, or carry a gazillion bottles with me every time we went out, or worry about whether I was mixing up the formula right, or think about whether Nestle were telling me lies about what was in the damn stuff in the first place. It was all laid on, on tap, and I never even needed to replace a washer. Despite the fact that this left breast of mine has never measured up to society's requirements, it's always been completely and flawlessly functional.

Till now. Suddenly there's a major breakdown, and my survival is at risk.

Up till now, I've been taking the economist's view of that. Balancing the risk and return, there's really no argument about what has to happen. And on the surface, I'm getting a far better deal than most; I'll end up a shape that's much more convenient, I'll be able to wear off-the-rack undies- who knows, maybe even strapless tops? I'll still have a cleavage, too. That's a far better deal than some women get.

Maybe, once I recover, I'll be able to run with the dogs without breaking my own nose.

But underneath all that froth and bubble, some part of me sees that the faithful old employee is no longer up to the task. She's done me proud, but she's going to be sacked anyway.

And yes, that does make me cry.

Wednesday, October 17, 2012

Helicopters, Dr Goodguy and why I hate Christie Brinkley

Yesterday morning was the bottom of the rollercoaster for me. The waiting was becoming unbearable. I'd had little sleep, again; from the moment I woke (again) for the day, the butterflies in my tummy had become airforce helicopters shooting bullets of adrenaline every few moments.

So much for my perfect attitude.

Perfect attitudes are overrated, actually. From the moment I started to drop my bundle, my friends started holding it up for me. I had messages of love and support from all over Australia and all over the world, most of them from people I'd never met in the flesh. Such is the power of the internet.

Every one of those messages helped. For at least a few seconds. Until the next adrenaline bullet.

Tired of even trying not to think about the prospect of the Freeloader's little mates already being in situ, I sat and wrote a stupidly long list of questions for the surgeon. Then I test-drove them on my medically-brilliant and amazingly empathetic best friend. We managed to strike off a third of them at once.

"Reading between the lines," said she as I reached the middle of the second close-typed page, "you're trying to find the outlines of this thing so you can project the course of it. It won't work, darling. There's no certainty with this."

As usual, the truth was helpful; there's no crystal ball supplied with the diagnosis, much as we might wish for one. Bless you, Jools. I stopped trying to chisel the edges of my disease in stone and started to accept my complete lack of control. Ironic, really, as I'm the one who has always known that control is an illusion. I've even written about that in my poetry, and you can't get closer to my true beliefs than that.

I mean, here's part of my description of the Bear as he stood on the riverbank at his old hometown, struggling to come to terms with the loss of his last partner to this same bloody disease.

Downstream, the river's studded with good-timers

who ride the sweet illusion of control.
You stand upon the pier, staunch as the pylons,
your face whitewashed and still. The pleasure boats
roar past, their dizzy burden of joyriders
spraying plastic laughter on the wind.
The wake comes like a serpent. 

I have no control of my diagnosis. Full stop. Staying in the moment, stopping this constant shoring up of what is with the terrifying what might be is the only sane course- yet it's the hardest strategy of all for me, with my constant tendency to project and analyse and prepare.

We talked about beauty, too, and my difficulty with the concept of looking in the mirror and seeing my head transformed. God knows I haven't really 'seen' my body since I hit menopause and started turning into the Michelin Lady- I block it out; unlike many women, I've not been particularly perturbed by the thought of losing part or all of a breast to save my life. But I've always relied on my pretty face and lovely wavy hair to help me through social situations. 

The thought of chemo is the elephant in the room. I do NOT want to lose my hair. Do you hear me, Freeloader? That is MY hair. I NEED it.

The morning limped by in its little leaden boots. The afternoon crawled after it, scraping its nasty scaly little belly on the floor. I packed my appointment bag and got in the car, with my heart banging out its heavy metal riff in my chest. 

I turned up an old Billy Joel tape- yes, my car is that old, and so am I- but I wasn't hearing it. I longed for Brahms. Brahms got me through my mother's death. I needed Brahms, not some cheery soul singing out his love for bloody Christie Brinkley. Christie Brinkley has hair.


The presence of my friend and neighbour Christine in the waiting room was transformative. Everyone needs a Christine to get through this illness. I wish I could bottle her essence and auction it on eBay- I'd make a fortune for breast cancer research.

She's one of those people whose attitude is so unrelentingly positive that you can't help but be swept up. And damn, can she take good notes. She was there to be my scribe, writing down what the surgeon said and asking the odd question herself. In this time of fluster and overwhelm (don't tell me those aren't nouns- I'm the patient and I can make up words if I damn well want to), someone to be a second set of ears is invaluable.

Enter Doctor Goodguy.

I think I just won the breast cancer lottery. I got a surgeon who knows how to talk to his patients. I got a surgeon who looks holistically at outcomes for women, not just at curing a disease. I got a surgeon who (OMG) doesn't charge a gap fee.

Thank you, Dr Rosie. Your referral rocks.

And so Dr Goodguy put me at ease at once. He showed me my pretty pictures on his lightboard, and pointed to the Freeloader. He showed me a swollen node in my armpit, and said it might just be a reaction to the biopsy- but it might not, too. He showed me that there were no Christmas tree lights in my liver or kidneys. 

He told me this looked eminently curable, and the day got a whole lot better.

Of course, there was a but. I'm starting to see that there's always a but with this disease. The Freeloader may not have actually welcomed his little mates in the door yet, but he's made some beds ready for them. Dr Goodguy showed me the calcification spots, close by the larger white blob in my left breast, that were just waiting for some more gatecrashers to lob.

And so to The Plan.

Surgically, I was given two options. To explain them, let's just think of my left breast as a luxury hotel where the Freeloader has wormed his way past reception and taken over a room or two. He's squatting in the east wing.

To get rid of him, we could just demolish the whole hotel, including the lobby (let's not get too carried away with the analogy- I'm talking about the sentinel node that drains the area of the tumour). Remove the whole building, then look around the general area of my armpit for any other compromised outbuildings and knock them down too.

That would leave me with a vacant block to the left, and given that I'm not exactly lightly endowed up there, the remaining hotel on the right would probably ensure I ended up walking in right-hand circles for the rest of my life. 

(Or at least until Dr Goodguy could supply me with a new construction on the site.)

And of course, the remaining outbuildings would have to be nuked or poisoned, just to be sure. There doesn't seem to be any way around that.

The second option is to demolish just the east wing, complete with those made-up beds. That's about a third of the hotel, which is a significant amount to remove, but it leaves the possibility of immediate reconstruction so the place still looks like a hotel.

Just a smaller hotel.

Then we start making sure that the offsiders haven't started sneaking in. We analyse the rubble and choose our best course of attack.

Maybe we poison the drinks. Maybe we nuke the place. Sadly Dr Goodguy doesn't own a crystal ball either. (Damn.)

The worst case scenario with option 2 is that the rubble shows signs of the Freeloader's dandruff around the edges when they check it at close range. If so, I'd have to have a second round of surgery hard up against the first, and go with option 1- total demolition. 

The best case scenario is that once I've recovered from the option 2 surgery, I pop off to have the nuking or poisoning done. Then when I'm through it, Dr Goodguy gets me to breathe the good gas again and (get this!) reduces the hotel next door the same size, so I can walk in a straight line.

That would give me a nice pair of D cups again, and I haven't seen D since I hit menopause. 

The thought of having a decent choice of underwear off the rack again was so alluring that I jumped at option 2 straight away. As you do.

I signed the forms to get the chop on Monday week. I thanked Dr Goodguy very much for squeezing me in at the end of what must have been a very busy day.

"Oh, this isn't the end of my day," he said. Laughing. "I'm due in surgery now."

It had to be 6pm.

Bless you, Dr Goodguy. You are one hell of a guy.

Tuesday, October 16, 2012

The real and the unreal

Does this look like a woman who has a possibly deadly disease?

Given that yesterday was my 56th birthday, I'm thinking the rose looks in a lot worse shape than I do. I look tired, yes, but I could pass for a healthy woman.

I keep trying to give myself reality checks like this, to try to head off the unreal (yet) thoughts that are constantly dancing through my head the moment I drop my guard. Last night was another restless one, as I started getting twinges of pain around the site of the Freeloader. I can't help but wonder what they mean.

Reality says I got a horse needle jabbed in one of the most sensitive portions of my anatomy a week ago, so it's probably still a bit traumatised. (God knows it's still bruised.) To be rational about those moments of crushing fear, I have to be logical- which means intellectually alert- which means awake. 

Then I have to start trying to settle myself down again, until I reach that moment of total vulnerability just before sleep where some new and horrible thought reaches out and grabs me by the throat. Repeat, ad infinitum. It's like some form of torture, dragged straight from Greek mythology and adapted by the Nazis. Tantalus, with the dangling fruit tree replaced by the alluring and desperately needed nothingness of sleep. 

The most frightening part of this is that I know it's going to go on, and on, and on. Chopping the Freeloader loose from his cosy hideout and zapping me till any little mates have been knocked senseless isn't the end of it- not by any means. There will be follow-up test upon follow-up test, anxious wait after anxious wait, and they're all going to play merry hell with my head. For years.

And of course, the closer I come to any results, the more these thoughts intrude during the day. Today I'm a total cot case, as I wait to see the surgeon late this afternoon and find out if anything new showed up in the bloods and the CT.

Somehow I have to drag myself out of this anticipatory trap. Somehow I have to learn how to put the Freeloader aside and live these days as normally as I can. (Normal? Hah. As if.)

Dr Rosie had an idea: "Allocate yourself an hour to worry about each issue," she said. "During that hour, go for it- and outside that hour, put the worrying off until its next turn in the queue."

Hmm. A disciplined approach; not the strong suit of this particular creative mind. But it's worth a try.

So I've just spent a good hour writing down questions to ask the surgeon. Poor man. He's going to get a barrage. I don't even know if he can answer half the questions I want to ask. I worry that I'll piss him off by taking over our appointment time. I find myself worrying still about stupid stuff, well outside my allocated hour. 

Not working.

So my answer, as ever, is to write about it. And still I'm worrying- I'm worrying that by blogging about how I really feel today, I'm dragging my friends into this nasty little world that I've suddenly been forced to inhabit. You know what I mean- cancer sufferers are OVER HERE, and you guys are OVER THERE. Where I used to be.

There's such a thing as too much knowledge, for you. I don't really want to freak you out about what it's like over here. But at the same time, I have to learn to be weak sometimes. I'm way too used to being the strong one, and I have to unlearn that a little. 

If I don't tell you what a mess my head gets in, then I'm refusing to let you in to help me. I need you to help me- to tell me the realities, to remind me of them, and often. I know them already, but they're getting lost in the quicksand of fear and unreality I've found myself in as result time approaches.

I need to be reminded of things like this, every day, every way:

1. I found the cancer. I was, and am, asymptomatic. I am ahead on points. I am likely to survive.

2. I am not my mother, or my Bear's mother, or my grandmother, or Jane McGrath, or Belinda Emmett, or the Bear's last partner. Comparing myself to them and fretting about their fate is completely pointless- I am on a different road from the start.

3. Statistics are as good as useless if I try to apply them to the outcome of my individual case. They just qualify the 'maybe'. (I KNOW THAT, so why can't I hear myself when I shout it out?!?) I'm way better off just speaking severely to the Freeloader than trying to analyse whether I'm part of the unlucky 5%- even the doctor can't answer that question.

4. I am 56 years old and my body has had various ailments and twinges for years. They are not all going to stop out of respect for my diagnosis. I need to deal with them the way I've always dealt with them instead of assigning extra meaning.

5. True beauty is not external. (Oh boy, this is a hard one.) From the time I started my working career at age 5 as a child model, my appearance has been part of my whole understanding of who I am. FFS, someone tell me you'll still love me if I'm bald and asymmetrical. 

And so on.

This good brain of mine is working against me, you see. It's always been far too good at projecting into the future and seeing how things might turn out. I've always been one to plan for consequences well in advance. So, for example: before I even know whether I'll have to have chemo, I'm grieving the loss of my hair and planning how to get a wig made from my own tresses. 

That sort of thing. My head is full of that sort of thing, and it's driving me nuts. I've never been good at 'one day at a time'.

Anything at all you can do to get me back to living in the moment will be good. Okay? Thanks.

Sunday, October 14, 2012

Engaging with the Freeloader, and riding the Rotor

Sometimes you just have to give yourself over to the experience and engage with it. Even if the experience is making you want to run away screaming.

As I got into the car this morning to go for my blood test and CAT scan, I actually admitted to the Bear that I was terrified. I told him that my legs were shaking. I told him that I was worried about my scan lighting up like a Christmas tree. And I told him that courage isn't being fearless. Courage is being shit scared and doing it anyway.

And so he gave me a big hug, and said "I know" to all of that, because he does know; he's been here before. And he opened the gate for me and off I went.

It must be hard, working in these places where they suck blood out of sick people and squirt dye into sick people all day, every day. You must get pretty jaded after a while. I think my Vampire-of-the-day was jaded. She didn't want to engage, didn't want me to crack jokes about my Freeloader turning up just in time for my birthday. Happy Birthday, Candy. You've got cancer. Very business-like, she was, just sucking my blood up and sending me out the door, and I tried not to judge her for it.

She was so businesslike that I had hours to kill, actually, before the next ride at the fun fair. I drove all the way into the CBD to use the internet cafe, parked, walked, got myself a computer upstairs and realised I'd left all my coins in the car.


Okay, so maybe I'm not meant to be pouring gold coins down the internet right now. I went back to the car, drove to the hospital and parked there instead. Two hours early.

Maybe I should acknowledge that I'm flustered and confused by all this. I mean, this morning I was all ready to leave and I could not for the life of me find the referrals that I'd had in my hand 15 minutes earlier. Not in my bag, not on the table or bench, not by the computer. They'd vanished into thin air.

Flustered. Not a state I'm accustomed to.

Once I'd sat down and stopped panicking- (panicking? ME? I never panic!)- I realised where they must be (tucked into my appointment diary as a book mark). I also realised that I need to be a bit more prepared for all this running around the fun fair. None of this throwing myself in the shower an hour before it's time to leave, grabbing my stuff and vamoosing. I need an appointment bag, and I need to pack it the night before.

Dammit, this thing is already changing me. I am SOOO not a pre-packed type.

Back at the hospital, I decided to move into the waiting room and just feel the atmosphere for a while. Oprah on the widescreen did nothing for me, so I tuned in to the other folk in the waiting room.

That was interesting. There wasn't nearly as much raw fear as at the BreastScreen clinic. Maybe my fellow-travellers over at the Aussie Breast Cancer Forum were right; maybe it gets easier once you know what the treatment regime's going to be, and you can just turn up and give in to the experience, one day at a time.

I let that thought soothe me. I buried my head in my Millenium book. And drank my litre of water.

Endless pages later, Salander had exhumed herself from her premature grave (sorry about the spoiler) and I was called in to find out whether I might get a reprieve this time too. I chose a daffodil-yellow shapeless garment, the Cancer Council's signature shade, rather than my preferred dark purple. Denial can wait at the door, thank you.

In contrast to Vampira, the radiologist was so engaged with me that we almost got married before I got out of there. The information flowed- THANK YOU (will you marry me?)- and everything I was politely asked to do was bookended with gratitude when I complied.

That young woman will go far.

Things I never knew: A CAT scan machine doesn't look like a space-age coffin. It looks like a giant space-age vanilla doughnut. I was shot full of dye ("You'll get a hot flush followed by feeling like you're wetting your pants, and you'll also get a metallic taste in your throat- THANK YOOOOOOU!"), monitored to see if I was about to spoil the party by dying of anaphylaxis on the table (dying of dyeing, perhaps?) and then inserted through the hole and out again while it made bizarre whirring noises as though we were all taking off together for Planet Diagnosis.

"Take a deep breath and hold it."

"Breathe normally."

Maybe the dye was making me hallucinate, but I was suddenly 20 years old and riding The Rotor at Luna Park, stuck to the spinning walls as the floor fell away. I chose not to share that vision with my almost-fiancee.

Three minutes of happy snaps and I was done, and busting to get rid of that litre of water. Not to mention curious about whether it would be blue yet (it wasn't). Dressed once more and waiting alone in the observation area for my cannula to be removed, I had harsh words for the Freeloader.

"Did you enjoy the ride? If you brought any little friends along to crash the party, they're about to be discovered and ejected."

And magically, that made me feel a whole lot better. Dammit, it's better to engage with the bloody tumour than to dance around its edges. I'd had hard words to say to it on the morning it was revealed to me- something really creative and cultured, along the lines of Well, YOU can f*** off- and I realised that I've really got to keep that pressure up. The Freeloader needs to be told, out loud, regularly.

He is SO not on my Christmas card list.

Talking to a tumour? Maybe I'm just hallucinating again.

Saturday, October 13, 2012

Waiting messes with your head

We've had insane weather here for the last few days. It's been bitterly, unseasonably cold, and the wind- well, it's been blowing dogs off chains. Welcome to spring. Or not.

High winds at this time of year always piss me right off, if you'll pardon the French, because with all the pollen around I invariably end up with chronic hay fever resulting in week-long cracking sinus headaches. But of course, this year I HAVE CANCER. Which means that my headache is a definite indication that I already have secondaries in my brain.

Or so my head says, at three in the morning when I can't sleep.

The crick in my neck from finally crashing out at an odd angle, after tossing and turning for hours, definitely means that I also have tumours on my spine. Feeling a little woozy walking around town after eating no breakfast definitely supports the brain tumour thesis. And if I drink my herbal tonic for the first time and my intestines end up bubbling and popping like a sly grog still, that definitely means the cancer's gone to my bowel as well.

In the cold but sanity-bearing light of day, I know this is nonsense. Waiting for cancer test results makes paranoid hypochondriacs of us all. It's clear that one part of my brain, suppressed pretty heavily during the daytime, is fully expecting my body to light up like a Christmas tree with sinister dots when I have the CT scan on Monday. At night time, as I look at my partner blissfully snoring beside me and try desperately to drop like him into the desperately-needed relief of sleep, these ideas creep out of my subconscious and parade in front of my eyes in all their technicolour glory; it's the YOU HAVE CANCER mardi gras, presented just for me at the moment when I'm truly alone.

And of course there's no way I'm waking him up. He has quite enough to cope with. This is round one for me, but it's round three for him and he lost the last two rounds by knockout. He needs to sleep.

I need to sleep too, and by yesterday my body was screaming 'ENOUGH!'. The night before I'd barely closed my eyes, thanks to my head exploding; I suspect that extreme tension on top of pollen allergies is an excellent recipe for feeling like you have a knife thrust in your eyeball. It was time for some affirmative action.

So despite the fact that our water tank is down to the second-bottom rung, I got in a hot bath with a book last night. Blessings upon my dear mate Vi for buying me the whole Millenium trilogy as an early birthday present; the first one kept me sane through my sleepless night, and the second will be keeping me company through quite a few bath times. I need escapism like never before.

The steam obviously relieved my head, because the headache gradually abated; the football helped me, too. The timing of the Australia-New Zealand rugby league test was perfect (as was the result), and I forgot all about my diagnosis for the best part of 90 minutes while I screamed at the hopeless referee and whooped encouragement at Billy and JT. When it was over my partner went out to attend to a bonfire in the yard, and by the time he came back I was completely gone. I only woke once during the night, and mercifully was able to go back to sleep again.

This morning, with the headache gone, it started to register upon me that I need to do a little more than drain our water tank into the bath every night and pray for another football game if I'm going to be able to deal with the constant waiting. If I put my Aunt Annie hat on and imagine myself advising somebody else, I'd be saying "Look it in the eye. Go through it, not around it." So maybe that's what I need to do.

Are you with me? You're not going to like this next bit, I bet. If you're with me, read it anyway and bloody well look it in the eye with me. Please.

What's the worst that can happen?

The worst is that, against the odds, I do light up like a Christmas tree and have a very limited time left on the planet. The worst is that I have to make a major decision about whether to be treated or not, to try to extend my life.

That's not such a hard decision. I know, really, that my quality of life is much more important than my length of life; watching my father lose his mind by degrees for some five years, watching my mother suffer treatment that made her incoherent with nausea for twelve months was quite enough to convince me of that. Hit me with the morphine, please, and I'll float out of here as fast as I can on a cloud.

If that happens, I can cope with it- I know I can. It's my partner who'll need the most support. I'll have to stay unstoned for long enough to marshall and brief the troops for him, because it'll bring him completely undone- I know it will.

I'll have to tie up a few loose ends. I've got a will, I've got a beneficiary for my super, I just need to think about the odds and ends and who might like what from my more cherished possessions. My piano. My jewellery. The stuff my son and my partner have little use for.

Shoosh. Stop telling me it's not that bad. I KNOW that the results so far don't suggest anything of the sort. (Oops, sorry for shouting.) But no, I'm not just being maudlin. I need to look it in the eye, so I can damn well sleep at night.

What's going to make me saddest?

The unfinished projects, I guess. The books that I've been writing, one that's not quite perfect and one that's not quite finished. The unfinished house, the unfinished bedroom up in the trees, the unlined room, all the things I've talked about doing that just haven't happened yet.

Gradually losing touch with the people I've come to care about far away from my home, my wonderful and supportive internet friends, when I'm too zoned out to write a sensible status update or comment, or too sore to hold the laptop. Not being here in my mind enough to talk to people.

Those things will be hard. Of course they will. But the worst, for me, will be knowing the fallout I'm leaving behind. I know my own pain will eventually be over, but if you've ever suffered terrible grief yourself from losing someone to cancer as I have, you'll have some insight into what I know is going to happen to my friends and loved ones.

That's the bottom line. That's why waiting is hard, and results are terrifying- for me, at least. I don't want my loved ones to go through what I went through with my mother.

How can I comfort you, just in case I do have to go?

Well, knowledge is power. I can only say from my own experience that in the end, you accept and move on- you have to. In the end, it does hurt less as time goes by.

At first, if you're one of those who are really close to me, you'll collapse in a heap. You'll have to rely on your friends for support, and when you start to feel like you're saying the same thing over and over and boring them to tears, you might need a counsellor to talk to instead- so GO. That's not weakness, that's taking control of your own grieving. Tell them I sent you.

You'll cry at inappropriate moments. Every little thing about the person who's gone will be waiting to jump out and bite you with painful memories, and there'll be no respect for where you are or who you're with. Every other death you hear about will bring it all back, no matter how remote from you that person might have been.

It will take longer than you think to move on, and far longer than any of your own friends who haven't ever lost a loved one will ever believe. You'll wish death on those who tell you to get over it already. Be kinder to them than you feel like being, if you can; they'll eat their words once they go through this themselves.

One day I'll jump out at you through some little memento, and you'll smile instead of bursting into tears. Hang on and wait for that day. It'll come, I promise you.

And in the meantime, how about you bookmark this post, just in case you need it later? That way I can give you a damn good talking to while you bawl.

There, that's done. Now maybe the mardi gras parade will bugger off and stop annoying me in the wee small hours. I'VE SEEN ALL YOU'VE GOT TO SHOW ME, OKAY?

Now go AWAY, you multi-coloured fluorescent fools, while I get on with getting better.

Friday, October 12, 2012

Secrets, lies and sideways solutions

Everybody has their own idea of how to handle bad news like mine.

In one corner of the ring are people like me, who just shrug their shoulders and tell people what's going on. It requires a certain level of confidence in others' ability to cope. It requires a certain amount of thought about how you'll drop the bombshell. But to me, it's the cleaner and less complicated course.

I like the truth. Life would be so much simpler if people just said what they meant, said what was really happening, and stopped trying to screw around with the truth to make it fit their agenda.

(You've probably worked out that I'm a Julian Assange fan.)

I mean, it's not like it's a crime to have breast cancer. It's just what happened to me (and about twenty nine other Australian women) last Wednesday. There was about a one in eight chance of it happening to me at some stage, and I drew the short straw. So did my grandmother. So did my cousin's wife.

No criminals here.

In the other corner of the ring are those who think that cancer and other dark subjects are private. You keep your cancer close to you. You tell only those who need to know.

That's not right for me, because I know what it feels like to be left on the outside of big issues which have affected people I care about. I've had people evade answering questions, I've had people cite confidentiality. I've had people straight-out lie to me about things they deemed too private for me to share. I'm telling you, it didn't feel good.

I felt like I'd been judged and found wanting. In their eyes, I didn't deserve the truth.

When people behave like that, cancer becomes something with which the sufferer can hurt people. Just because I'm the focus of everyone's attention, just because people are telling me to look after my own needs, doesn't mean I have a licence to decide from afar that someone can't cope with this news, or will react in a way that's less than ideal. I didn't just get elected judge and jury of my peers' character.

Maybe there's more to it than that. I think sometimes sufferers feel like they're somehow responsible for their cancer, or that they're diminished by it. Perhaps they feel that they just don't want to make others uncomfortable by talking about it.

Well, bugger that for a joke. Who am I to be ashamed of my cancer?

And you over there- the one squirming- stop pretending that it won't happen to you. It's the luck of the draw, and I'm not going to let you off the hook by shutting myself down.

I want the air to be clear around me, so I'm not walking through a haze of half-truths. I don't care if people want to talk about my cancer. No, more than that- I actually want people to talk about my cancer.

If you're talking about cancer happening to me, you might just figure out that if it can happen to me, it can also happen to you. You might decide it's time you had your breasts slammed between two glass plates again, or for the gentlemen, time you submitted to a strange finger where the sun don't shine- despite the discomfort and embarrassment- TODAY.

And that, my friend, might just save your life.


It's been an interesting sort of a day. At the beginning of it I was realising what a very long time it seemed to have been since I first felt that lump, and getting anxious about how long it was taking to do anything about it. I don't see the specialist till next Wednesday, and it's a long way from seeing a specialist to actually getting the chop.

By nightfall I'd managed a solution of sorts to that, survived some moments of complete knee-wobbling fear that struck me without warning and decided, with my son's help, that my strategy of writing a blog about my illness was a damn fine idea.

It unfolded the other way around, starting with a rather wonderful email from my son. Like all the rest of you, he's getting his updates right here on the blog.

You're bloody brilliant at writing, always have been (and you know it), and right now that's a big deal, because from where I'm standing, it makes a huge difference not to be left guessing and wondering.  Wondering whether to call.  Wondering how you're going.  Wondering what you're worried about, guessing what to ask, worrying that it'll somehow be the wrong thing.  Wondering if I should avoid the C-word.  Et cetera.  Instead we at least have some idea on which to base our judgement.  Damn good thing for you to do for all of us who aren't in your living room.

I want you to know that I'm trying to listen hard to find out what you (yes, you - I know you'll always worry about everyone else) want/need.  Plus, I'll be coming up soon, so we can spend some time in person.  If nothing else, this whole thing has reminded me of how long it's been since I came up on my own and we spent some time together.

I may have shed a little tear or two over that. The good tears, not the hopeless ones. Some friends have wondered if I'm raving mad, making all this so public (see above), and I guess this answered the question for once and for all. And honestly, my son's hugs are like no other hugs, and I can't wait to get one.

Then of course, there was the question of breakfast. More bloody decisions. I hate decisions, and the decisions I hate the most heartily involve limiting my choices of food.

My neighbour- yes, the one with the grazable herb garden- had lent me his herbal 'bible' and a handy supply of turmeric, herb Robert and various other useful greens (thank you Jimmy), and I'd read up big and imbibed various concoctions the previous night in the hope of doing something- ANYTHING- to help myself while I waited for my first appointment with the specialist. I kept feeling the lump nervously, expecting it to be enlarging by the moment. How big was it when I first felt it? I couldn't really remember. What should I be eating? What shouldn't I be eating? Could I live on herbs and turmeric? (Would I rather die?)

Trying to devise your own cancer-limiting diet is not something I'd recommend to anyone with existing eating issues. In the end I got in my car, which had to be taken in for repairs (cue 'normal life' music), and drove to town without any breakfast at all (cue 'idiot' music).

The car delivered, I walked half-sideways to the shops wondering if I had a brain tumour as well (cue 'knee-wobbling terror') before realising that I was actually staggering because I was weak from hunger. Fool. I decided that the decision about food was too big for me and headed into Traditional Medicinals for some anti-oxidants and advice.

About half an hour later I emerged with my anxiety neatly bottled and a fully-formed intention in my head to raid my favourite cafe for a suitable breakfast. "Avoid all sugar and limit wheat, especially in the morning, because those things are what tumours thrive on," the naturopath had said; it sounded like good, simple advice to me. I didn't care whether it was right or not. I wasn't going on an internet hunt for the four bazillion pieces of conflicting information on the subject. I just wanted a healthy eating path to follow that didn't sound too much like it was completely raving bonkers.

One plate of scrambled eggs, smoked salmon and English spinach later (hold the toast, pass on the coffee), I was feeling much saner. Also, I could walk straight. Also, it was delicious.

Car duly fixed, I headed to the GP to ask the secretary (without a lot of hope) if there was any chance of her administering some pressure to hurry up the specialist's appointment, given that so much time had passed since I found the lump. Dammit, I want to get rid of this thing!

Heaven bless Dr Rosie, the other GP in our local practice, who suggested I come in without such a thing as an 'appointment' (yes, the waiting room was well-populated) for a chat. What a treasure she is. We sat there and talked about lumps that grow so fast you feel like they're changing as you watch, and why the hurry wasn't as great as I might believe (my Freeloader doesn't seem to have changed that much, which is good news in terms of metastases).

We talked about sentinel node biopsies, and whether they could be done in Lismore (possibly). And in case you wanted to know what the hell I'm talking about, that means injecting dye to see which lymph nodes are draining the area of the tumour. If you can pick the right ones you can avoid taking all the lymph nodes out, as that can cause the affected arm to swell up like something out of the Michelin advertisement.

Hey, diversion- how lucky am I to have a very best friend who's a doctor? The information my beloved Jools has given me, including the heads-up about sentinel nodes, is worth its weight in gold. Another hug for that lady! You'll have to go to Melbourne to administer it, though. No- better idea- bring that lady here and I'll do it! There are very few exceptions to my don't-ring-me rule, but she's one of them.

But back to Dr Rosie. We talked about strategies for coping with anxiety.

"Do you believe in God?" she asked, with no obvious agenda.

"I think the fact that my partner is a good, kind man who is now devastated by having to cope with breast cancer for the third time might just preclude that," I replied. Possibly a little tartly.

It's a funny one, the God thing. When somebody says they're praying for me, I do truly appreciate it. It indicates a really sincere desire to help me, I know, and that's beautiful. But if there's a God, all I can say is He's got a bloody funny sense of justice.

(What was that I said about the five stages of grieving? All my anger is directed at whatever idiot life force decided that my partner would have to suffer this again. I don't actually feel any anger about myself at all. Why me? Don't be silly. One in eight. Why not me?)

In the end we decided that time out in nature is my best cure for anxiety and stress. I knew that already at some level, but it was good to have Dr Rosie affirm that it would actually do me good.

We talked some more about my poor Bear, and how hard he was finding all this. To say it's knocked him for six is something of an understatement. He's been hit all the way out of the ground and landed on the railway tracks next door. That's when the tears finally got to me; injustice gets me every time. Fuck, I'm angry. And miserable. It's almost unbelievable that he could be required to go through this again in the name of love. It's not fair.

So I was given the gift of a free meltdown in safe company today. That was great. I needed that. But the greatest gift Dr Rosie gave me was by thinking sideways. She's given me referrals in advance for two of the tests that the surgeon will want me to undergo, so they can be done on Monday and the results will be on his desk when he sees me on Wednesday.

Clever lady. That does save time.

So on Monday I'll be going to Transylvania for an encounter with Sullivan-Nicolaides Vampire Services (that would be a blood test), followed by a session pretending to be an extra in an episode of House (that would be a cat scan at the hospital).

The Bear's right. It's the waiting that kills you, long before the cancer gets anywhere near doing so.

Wednesday, October 10, 2012

My mother threw a blocksplitter at me: diagnosis

Coincidence is a crazy thing. Until yesterday I was completely convinced, with at least one part of my brain, that the lump in my breast was the result of a moment's #co-ordinationFAIL whilst thumping the bark off an ironbark.

I mean, when I lost hold of the handle of the blocksplitter and the damn thing flew back off the tree and cracked me in the mammary, it certainly hurt enough to cause a bit of swelling. I had a spectacular bruise, too. It was whilst washing the bruised area in the shower that I found the hard pebble-shaped thing under it.

Mind you, it was three days later and I'd completely forgotten about the incident with the ironbark, so I immediately had a minor heart attack. My family history on my mother's side is littered with fatal cancers. My partner has been through breast cancer twice already, with the worst results, as you'll know if you've read episode one of this blog. I was far more worried about what I'd say to him and how he'd react than about my own wellbeing.

It was the weekend, and I couldn't even ring the doctor, so I said nothing at all to anyone. That was an interesting 24 hours. By the next morning I'd had a look in the light instead of just groping around in our somewhat dim shower recess, had found the huge bruise and remembered the small accident.

Whew! What a relief!

My next instinct may have saved my life. I rang the doctor anyway, because it occurred to me that there is such a thing as coincidence.

And also, my mother (who by-the-by has been dead for 25 years) does have a habit of drawing my attention to things in inexplicable ways from the other side of grave. Like the time she screamed in my ear he's not going to stop! a moment before I swerved in time to avoid the lunatic who'd ignored a stop sign. Like the time I stopped dead on a bush track for no reason at all, looked down wondering why my feet had stopped moving against my will, and saw the venomous snake I was about to tread on.

Maybe she threw that blocksplitter at me, to stop me being so damn complacent. My monthly breast checks were, well, sometimes less than thorough and sometimes less than monthly. And I hadn't fitted a mammogram into my schedule for five years.

Thanks, Mother.

So started the three-ring circus of waiting, testing, waiting. Three weeks waiting for the swelling caused by the injury to have a chance to go down, then the mammogram.

Oh joy; as I commented to the lady behind the radiation barrier, this is a test designed by a man, and I'm waiting with happy anticipation for the day they introduce a similar test for testicular cancer.

Another week to the call-back, where I had more crush injuries inflicted on my poor mammary followed by an extended wait in a room full of women in various stages of denial or distress. I can feel atmosphere intensely. That waiting room at the BreastScreen clinic was dire. I was the most relaxed person there, because of course I just had a self-inflicted injury about which I was being over-cautious.

I really ached for some of those other women, trying to read or knit or make conversation with strangers while carefully Not Talking about why they were there. The room was full of pink ribbons and flowers and free water bottles and biscuits, and the air was full of fear.

The ultrasound gave me my first real twinge of concern. Honestly, I do wish someone would explain to that operator that rushing out of the room to get the doctor is best preceded by some sort of explanation to the patient. I felt like a side of pork lying on the table, not least because the air conditioning seemed to have been set to 'freezer'. (Did I mention how much I hate reverse cycle air conditioners?) I requested a change of setting, but was still shivering on the cool-room table half an hour later when the doctor came in and nearly expired from the sauna effect at head-height.

And then of course there was the biopsy. The actual test was less uncomfortable than the doctor's bedside manner; how I wish people would explain not only what they're doing, but why. Silence has always been more alarming than the facts for anyone with an ounce of nous.

So began another week of waiting for results. I sat outside the clinic trying to stop shaking before I drove home, unsure whether it was the hypothermia or the anaesthetic administered before they went gold mining with a horse needle in my breast making me feel so crap. Fleetingly, the idea occurred to me that I might be in shock. Phone a friend seemed like a good option, despite my loathing of telephones; some part of me needed to hear a kindly voice.

Reassured by a nice dose of sympathy, I got home in one piece, described my experience as succinctly as possible to the select few who knew what was going on, and put it all out of my mind. I had an injury. Hear me? An INJURY.

And so to yesterday morning. When the GP called me in ahead of a parent with a sick baby, I assumed it was because he knew it would be quick work to tell me the results were fine.

Ha bloody ha.

"Mixed results," said he. "They've found a cancer in a milk duct and it has started to invade the surrounding tissue."

That was the point at which I experienced disbelief for all of two seconds. I think I said something daft like "Oh, really?", which is my standard euphemism for "you can believe that if you want to, but don't expect me to queue for tickets".

And then I said to myself, "Well, given the family history this isn't really surprising."

That was the end of the disbelief stage. Wow, I thought, at this rate I'll be through the five stages of grieving before I get out the door.

"However it's small," he went on, "less than 2cm, and there's no obvious sign of it affecting the lymph nodes at this stage so it looks like a grade 1A. Prognosis is good because it's been found so early. You found the cancer instead of the cancer finding you, which is the best scenario. If you'd presented with symptoms the scenario would be very different."

I've got to take my hat off to that GP. He's only been in town for a few months, and he's handled the whole thing with great empathy and wonderful communication skills. (You rock, Dr Adnan. Please stick around. And if any redneck makes a negative reference to your accent or your dark skin, you can count on me to give them a fatal tongue-lashing.)

We chatted on for a while. The fighter in me had already been woken up. I was ready to go as many rounds as it took with the Freeloader in my breast. Just show me where to punch, and I'll be at it.

"You have an excellent attitude, and that's important for success," said the doctor as we parted.

You bet I have.

I got in the car, drove to town and did my grocery shopping as usual. My best friend phoned, concerned to see how my results had gone. I didn't answer. Telling people could wait a little longer. Right now I was going to prove to myself that this bloody thing wasn't going to rule my life. Dropping my bundle? Not an option.

By one in the morning my attitude was less pugilistic. The specialist still hadn't rung me with an appointment time; I'd discovered the sapping nature of being left in limbo, not knowing whether to kiss my mammary goodbye or to go over to my neighbour's house in the dark and start grazing on his antioxidant herb garden.

I'd made too many difficult phone calls and written too many difficult emails, and still I wasn't sure who else I wanted to tell and wondering who I'd missed out. Who would be upset if I didn't let them know? Did I care? Should I just shout it to the whole world? I'm not good with secrets. I'd rather everyone knew, so they didn't have expectations of me that I couldn't deliver on.

But I didn't want to start a flood of human contact that might break me, either. I'm not good with excess human contact. I need my space, physically and mentally.

The number of choices I would be faced with was particularly distressing. I'm not good with choices. How would I know if the surgeon was an expert in my sort of case? Even if I shopped around for a great doctor with the help of my extensive range of medico friends, how could I attain enough knowledge instantly to make an informed choice about my treatment? Should I be changing my diet and lifestyle in radical ways, or would that (a) be pointless and (b) detract from my quality of life? Should I assume that I'd get excellent treatment if I just went with the flow and trusted my doctors, or was that the height of stupidity?

And then there was the knowledge of the impact this whole thing was going to have on my Bear. He'd taken the news better that I'd expected, but he'd still been knocked for six. Because he knows. No matter how much I stress that this is a very different case from his mother and his lover, both of whom presented with catastrophic symptoms far too late, he knows so much better than I what this road trip is likely to mean for me, and for him.

He's suffering. He's angry. That's the part that will likely bring me to tears when the adrenaline wears off, not my own fate. It's just not fair.

Third time lucky, I keep saying to him. Third time lucky. This is the one we win, to heal you.

I'd been fine at bedtime; even the quirks and giggles of my beloved 'Gruen Transfer' on telly couldn't keep me awake. I fell into an exhausted coma and was woken two hours later by our little old dog, who is on her last legs and gets up a few times a night to drink gallons of water.

I couldn't get back to sleep. I played games on the laptop. I wrote emails to friends I hadn't told yet. I started reading the book another friend had given me as an early birthday present. Displace. Displace. Displace.

I went to a different bed, afraid to wake the Bear who'd also gone into zombie coma mode after such a day. I went back to sleep just before dawn, and was woken by a business phone call an hour later.

Another dear friend, whom I'd emailed in the middle of the night, rang a few hours after that. It was great to hear his voice, actually, and he cheered me up immensely, but the effect of that second call on my Bear alerted me to the need to stem the tide at once. Because I pick up on atmosphere so intensely, I need him to be calm. He was already bracing himself for chaos, encouraging me to tell as few people as possible to avoid us feeling overwhelmed.

No way. I don't do secrets.

I've been sitting here writing ever since, and setting up a Facebook page to let friends know what's happening on the Cancer Carousel. I could write a book, already. Easily. But I don't much feel like talking about it.

Talk to me here. Down there, in the comments. That will help.