I started out on this journey banging my head on the floor about my test results, and jamming my brain full of very detailed (and often irrelevant) information, and jumping up and down to try to find out anything- anything- that would give me some sort of firm handle on what was going to happen to me. Whether I was going to die, and if so, how soon. And how could I stop it? Because dammit, it just didn't feel right to die just yet.
I was in a bit of a state, actually. As is usual, of course, for those who've just had a cancer diagnosis. It was my beautiful GP, Dr Rosie, who suggested to me in her usual quietly humorous way that it wouldn't be a great idea to get so preoccupied with my test results that I walked out onto the road and got hit by a bus.
That is a basic truth; none of us really knows when we're going to die, unless we have a terminal prognosis, a set of handcuffs keeping us in a safe place and a doctor with an excellent handle on probabilities within the specific field. Even then, there are people who defy the odds or succumb to a sudden complication.
I remembered that conversation today, when the Bear and I were having a bit of a deep and meaningful which turned into a comedy show (as our conversations often do). Our relationship was built on empathy and laughter, and so it remains; we soar from arguing to giggling, from philosophy to farce.
"After all," I said, "we're all dying really. It's not just me. I just happened to get a signpost."
"A tree could fall on me today at work," he replied, as he wandered around on his way out the door to the cattle property, still looking for his beloved pocket knife that's been missing since last week. I'm not the only one with Cancer McFlurry brains around here.
"And I could be hit by a bus," I said.
At which point he started to guffaw.
"You'd have to be fucking stupid to get hit by the bus on this road," he chortled.
"And deaf," I giggled. "You can hear it coming about two kilometres away."
But after he'd given up on the pocket knife (again) and finally left for work, I figured that actually, that's a perfectly workable analogy. We're all dying, but I can hear the bus coming.
Most of you can't. Yet.
***********************
Dr Goodguy rang me this morning to answer a list of questions as long as his arm which I'd emailed to him earlier in the week, still in the throes of my irrational quest for certainty.
"I talk a lot faster than I type," he said, and I suspect he was laughing. "Is it okay if we do it this way?"
So he spent about twenty minutes sorting me out, again. Poor chap. No, there's no need at this stage for a double mastectomy; too traumatic, and no indications that it's a priority. Yes, docking my ovaries at a later stage would be a good idea; and yes, he could do that.
Yes, chemo could start three or four weeks after surgery, as long as I'd healed up to his satisfaction. Yes, here were the names of the two oncologists he'd referred me to; I'd get sent to the first one with an appointment available, unless I had a preference (I didn't).
No, inserting an expander into the chest at the time of mastectomy was a dodgy idea. (An expander is like a balloon which can be embedded in the chest, then gradually inflated with salt water to stretch the tissue till you have a breast-like mound again.) Radiation therapy might cause the expander to be pushed into a weird shape by scar tissue. And the effect of the radiation on the tissue would likely make stretching it a really, really risky process.
Bugger.
I really am going to miss having a cleavage. As I joked with some friends the other day, instead I'm going to have a leavage. Because that's what they'll leave behind.
More like the White Cliffs of Dover than the Grand Canyon.
So it comes down to chopping a bit of muscle or fat off some other part of my body and recreating a breast-like mound from that, unless I cope miraculously with the rads. Please pray for a miracle. I really, really want to avoid more major surgery here. Not to mention that the trouble with graft surgery is pain in two different locations.
Probably, in my case, the whole thing would be a pain in the butt. Literally.
**************
The other bit of news was about the rest of the pathology from my doomed mammoplasty. It probably won't mean much to you unless you've been to Cancerland yourself, but I'll try to explain.
Tumours can be 'fed' by hormones, so they test the hormone receptor status of the tumour. The Freeloader has been found to have an appetite for oestrogen. (Mmm, yum yum, female hormones!) He's what's called 'oestrogen positive'.
So that means we can starve the little bastard. It's another tool in our toolbox- shutting off the oestrogen supply. I can swallow hormone tablets for about five years, to ruin his party. Dr Goodguy can whip out the ovaries later on, to stop them drip-feeding any new gatecrashers.
Look out, Freeloader! The pantry is shut!
The other bit of good news was that the Freeloader is NOT one of the nasty HER2 positive ones. They're the aggressive, fast-moving tumours that don't respond to hormone therapy. Being HER2 negative gives us all a bit of breathing space.
***************
So maybe I woke up in tears this morning, looking down at my poor chest that's about to be turned into a speed hump with ditch. Maybe the next six to twelve months will be pretty unpleasant, and not what we had planned. Certainly I'm going to lose all my beautiful hair.
But at least if you hear the bus coming, you can try to step off the road.
Thursday, November 8, 2012
Wednesday, November 7, 2012
The very angry Bear
The last few days have been tough for my Bear. This isn't his first encounter with the Freeloader. He has a whole gallery of pictures of him on the back of his eyelids, and all those pictures have black drapes around them.
First, his mother. Her mastectomy was many, many years ago, before surgeons considered the welfare of the woman lying on the table. All they were interested in was ridding her of the disease. The word 'butchery' comes to mind. Her operation was invasive, radical, ugly. He looks at that picture in the night as he tosses and turns, he replaces her face with mine, and all the logical talking in the world can't wipe out that vision and that fear.
And then, of course, his mother banged her elbow nine years later, and her arm shattered from wrist to shoulder where the bone tumours had silently reappeared and eaten her humerus away. My bone scan, and the hideous wait for results, was just the first of many as my doctors try to anticipate and counter just such an outcome.
That will be hard for me, of course; but the Bear is already seeing an infinite corridor full of hideous waits ahead of us, and a lifetime of fear that history will repeat itself.
And then he moves along to the next room in his gallery, and it's full of portraits of his previous partner going through the many and various stages of treatment for terminal cancer. I don't need to describe those pictures to you. I'm sure you have some to refer to in your own head.
What you may not have in your head is the gallery of overwhelm right next door to those portraits of despair. It's one thing for me to be overwhelmed at this stage, but my Bear knows what's ahead for him.
Let me put it to you straight: we're trying to run a farm here, a farm which moves us towards self-sufficiency. That means that every day while I'm incapacitated, on his own, he'll be caring for the stock (a complex and many-faceted task involving thrice-weekly trips to town) and the vegetable garden, maintaining and repairing the farm infrastructure and looking after hygiene, trying to hold down his part-time job on the farm up the road (heavy, physical cattle work) so we have some money for jam, doing the household chores that he has always done (he is a damn fine man and does more than his share- always has), supervising and contributing to the construction of our unfinished extension, and adding to his job list everything that I used to do around the place. Like, paying bills, dealing with the mail and finances and doing all the cooking and shopping, on top of my share of the farm work.
Look how long that paragraph was. And I'm not finished yet.
He will also be making sure I have appropriate food and medication, dealing with my emotional and physical roller coaster, driving me everywhere I need to go (including to hospitals and doctors' surgeries, which are full of terrible echoes for him), and trying not to load me up too much with his own frustration and fear and pain and anger.
For most partners of cancer sufferers, this mountain of expectation and the endless winding road of physical and emotional exhaustion creeps up on them. For mine, the landscape gallery is already cluttered with pictures of the fucking impossible. And so he is, already, in meltdown.
For a few days last week, he took the usual male cop-out of choice- he left home for hours on end, hooked up with his mates and got himself absolutely shickered. Plastered. Rat-faced, and belligerent to boot.
As you do. Who am I to judge him, really? Look at all those god-awful hideous pictures. Look at the hand he's been dealt. If I'd been through it all before, I'd probably want to do the same- hide my head under the blankets for all time, roll myself into a ball of misery, put in the earplugs and scream angrily for room service.
But of course, that won't do. I can't leave him there, rolled into a tight little knot and looking at life furiously through the bottom of a beer bottle. When you're with a man's man like my Bear, you accept that talking about feelings has to be done on his terms. It's not something you can just force out of him. Anger and shouting just make him curl up tighter. Emotional manipulation just makes him more angry. He's intensely private; he won't talk to strangers about his feelings at all, so professional counselling is out.
Thank god I'm Aunt Annie in another life.
I'm just lucky, I guess, that through long experience and a lot of careful listening and watching the signs, I've learned how and when to prise the lid off his bottle. I'm lucky too that I've learned the first lesson of love, the one that most people trip over at the first hurdle of a relationship: above all, do no harm.
Use no sharp weapons. Take off your own anger before you try to solve a problem. Look at the world from where your partner's standing.
Between us, Jools and I managed to sneak into the Bear's bottle yesterday and let his tears out. There was A Lot of crying. There was an ocean in there waiting to be released. By this morning, he was able to talk to me about what he saw in the gallery of fear.
And so I set about reframing some of those pictures. There was nothing I could do about the pictures themselves, other than acknowledge their presence; they are what they are, and they can't be changed until they're painted over by a new experience. We don't learn deep truths by being told- not as children, not ever. We learn by doing and seeing things for ourselves. Aunt Annie knows that much.
And so I took the portrait of the Freeloader, the one with horns and a trident, and I showed him what I saw.
"This is a journey I didn't choose to take, but because I've got no choice about doing it I have to choose how I approach it. I'm choosing to see it as intriguing, and challenging, and not entirely bad. I know I won't like a lot of it. But I'm going to find out how strong I am, and that's something I want to know."
"You're very strong," he said, because he knows that already, from experience. And he picked up the paintbrush, and dabbed a little bit of my strength over the Freeloader's evil eyes.
"But I won't know how strong until I do it," I said. "I'm almost looking forward to the fight."
I looked at the landscapes next, the endless chores and expectations.
"And I know I'm going to learn a lot, too. I'm going to have to learn to ask for help. I'm no good at that, and neither are you, are you?"
He was silent for a moment, looking me in the eye.
"No," he admitted at last.
"You're going to have to learn," I said.
Talking to a man like mine requires patience. You have to know when to just be quiet and wait. I waited.
"I know," he said eventually.
"I'm learning already. I asked Jools to come, even though I felt guilty about disrupting her life. I accepted when Vi offered to come, even though I know she's been through so much already and I feel bad for putting her through it again. So let's talk about who you can ask for help."
And so we did. We went through a mental list of friends and neighbours, the ones we could rely on not to be blackbirds; oh yes, my Bear has experienced the Blackbird Syndrome. It scarred him badly, being so let down by people he thought were there for him. But he had to admit that there aren't many blackbirds along our road these days.
We talked about who we would ask for help, and what we could ask them to do. We talked about how he needs to go on working at the cattle farm, because he feels free there, walking alone under the wide sky with just the gentle sound of contented munching and the calves nuzzling his hands now and then; but he needs to come home afterwards, not to join up with people who'll encourage him to blot everything out.
That's not friendship.
As he'd put it, "No loop theory." He's not going back to the rat-faced belligerence. That is likely to impact on my recovery. He knows that. I told him, but I didn't really need to- other than to let my own feelings out. He already knew that, in his heart.
We wondered who else he'd feel confortable talking to about his feelings, other than me. He acknowledged that his very best friend, the man he calls his brother with heart-felt passion, would never let him down- yet still he has trouble letting out his feelings to him.
"Well, you'll just have to keep talking to me then," I said.
And hugged him tightly.
Yes, I think I'll still have to be his emotional catcher. It'll take my mind off me, I guess, and that might be a good thing. It'll make me feel that I still have my uses, even if I'm lying in bed like a beached and lopsided whale. Nobody likes feeling useless. Maybe his emotional limits are my get-out-of-jail card; maybe his need for me will save me from self-pity.
So we lay in bed holding hands for a while, just being together. We got up and hit the chores, and I tried unsuccessfully not to feel angry that, just as I felt healed enough to do some of the normal things I do, I was heading back for round two of surgery.
I waved him off to the cattle farm and saw that his forehead was smooth, the smile was genuine, his eyes were deep brown and glossy again instead of the furious, opaque black I'd seen for the last few weeks.
We will get through this. I know we will.
First, his mother. Her mastectomy was many, many years ago, before surgeons considered the welfare of the woman lying on the table. All they were interested in was ridding her of the disease. The word 'butchery' comes to mind. Her operation was invasive, radical, ugly. He looks at that picture in the night as he tosses and turns, he replaces her face with mine, and all the logical talking in the world can't wipe out that vision and that fear.
And then, of course, his mother banged her elbow nine years later, and her arm shattered from wrist to shoulder where the bone tumours had silently reappeared and eaten her humerus away. My bone scan, and the hideous wait for results, was just the first of many as my doctors try to anticipate and counter just such an outcome.
That will be hard for me, of course; but the Bear is already seeing an infinite corridor full of hideous waits ahead of us, and a lifetime of fear that history will repeat itself.
And then he moves along to the next room in his gallery, and it's full of portraits of his previous partner going through the many and various stages of treatment for terminal cancer. I don't need to describe those pictures to you. I'm sure you have some to refer to in your own head.
What you may not have in your head is the gallery of overwhelm right next door to those portraits of despair. It's one thing for me to be overwhelmed at this stage, but my Bear knows what's ahead for him.
Let me put it to you straight: we're trying to run a farm here, a farm which moves us towards self-sufficiency. That means that every day while I'm incapacitated, on his own, he'll be caring for the stock (a complex and many-faceted task involving thrice-weekly trips to town) and the vegetable garden, maintaining and repairing the farm infrastructure and looking after hygiene, trying to hold down his part-time job on the farm up the road (heavy, physical cattle work) so we have some money for jam, doing the household chores that he has always done (he is a damn fine man and does more than his share- always has), supervising and contributing to the construction of our unfinished extension, and adding to his job list everything that I used to do around the place. Like, paying bills, dealing with the mail and finances and doing all the cooking and shopping, on top of my share of the farm work.
Look how long that paragraph was. And I'm not finished yet.
He will also be making sure I have appropriate food and medication, dealing with my emotional and physical roller coaster, driving me everywhere I need to go (including to hospitals and doctors' surgeries, which are full of terrible echoes for him), and trying not to load me up too much with his own frustration and fear and pain and anger.
For most partners of cancer sufferers, this mountain of expectation and the endless winding road of physical and emotional exhaustion creeps up on them. For mine, the landscape gallery is already cluttered with pictures of the fucking impossible. And so he is, already, in meltdown.
For a few days last week, he took the usual male cop-out of choice- he left home for hours on end, hooked up with his mates and got himself absolutely shickered. Plastered. Rat-faced, and belligerent to boot.
As you do. Who am I to judge him, really? Look at all those god-awful hideous pictures. Look at the hand he's been dealt. If I'd been through it all before, I'd probably want to do the same- hide my head under the blankets for all time, roll myself into a ball of misery, put in the earplugs and scream angrily for room service.
But of course, that won't do. I can't leave him there, rolled into a tight little knot and looking at life furiously through the bottom of a beer bottle. When you're with a man's man like my Bear, you accept that talking about feelings has to be done on his terms. It's not something you can just force out of him. Anger and shouting just make him curl up tighter. Emotional manipulation just makes him more angry. He's intensely private; he won't talk to strangers about his feelings at all, so professional counselling is out.
Thank god I'm Aunt Annie in another life.
I'm just lucky, I guess, that through long experience and a lot of careful listening and watching the signs, I've learned how and when to prise the lid off his bottle. I'm lucky too that I've learned the first lesson of love, the one that most people trip over at the first hurdle of a relationship: above all, do no harm.
Use no sharp weapons. Take off your own anger before you try to solve a problem. Look at the world from where your partner's standing.
Between us, Jools and I managed to sneak into the Bear's bottle yesterday and let his tears out. There was A Lot of crying. There was an ocean in there waiting to be released. By this morning, he was able to talk to me about what he saw in the gallery of fear.
And so I set about reframing some of those pictures. There was nothing I could do about the pictures themselves, other than acknowledge their presence; they are what they are, and they can't be changed until they're painted over by a new experience. We don't learn deep truths by being told- not as children, not ever. We learn by doing and seeing things for ourselves. Aunt Annie knows that much.
And so I took the portrait of the Freeloader, the one with horns and a trident, and I showed him what I saw.
"This is a journey I didn't choose to take, but because I've got no choice about doing it I have to choose how I approach it. I'm choosing to see it as intriguing, and challenging, and not entirely bad. I know I won't like a lot of it. But I'm going to find out how strong I am, and that's something I want to know."
"You're very strong," he said, because he knows that already, from experience. And he picked up the paintbrush, and dabbed a little bit of my strength over the Freeloader's evil eyes.
"But I won't know how strong until I do it," I said. "I'm almost looking forward to the fight."
I looked at the landscapes next, the endless chores and expectations.
"And I know I'm going to learn a lot, too. I'm going to have to learn to ask for help. I'm no good at that, and neither are you, are you?"
He was silent for a moment, looking me in the eye.
"No," he admitted at last.
"You're going to have to learn," I said.
Talking to a man like mine requires patience. You have to know when to just be quiet and wait. I waited.
"I know," he said eventually.
"I'm learning already. I asked Jools to come, even though I felt guilty about disrupting her life. I accepted when Vi offered to come, even though I know she's been through so much already and I feel bad for putting her through it again. So let's talk about who you can ask for help."
And so we did. We went through a mental list of friends and neighbours, the ones we could rely on not to be blackbirds; oh yes, my Bear has experienced the Blackbird Syndrome. It scarred him badly, being so let down by people he thought were there for him. But he had to admit that there aren't many blackbirds along our road these days.
We talked about who we would ask for help, and what we could ask them to do. We talked about how he needs to go on working at the cattle farm, because he feels free there, walking alone under the wide sky with just the gentle sound of contented munching and the calves nuzzling his hands now and then; but he needs to come home afterwards, not to join up with people who'll encourage him to blot everything out.
That's not friendship.
As he'd put it, "No loop theory." He's not going back to the rat-faced belligerence. That is likely to impact on my recovery. He knows that. I told him, but I didn't really need to- other than to let my own feelings out. He already knew that, in his heart.
We wondered who else he'd feel confortable talking to about his feelings, other than me. He acknowledged that his very best friend, the man he calls his brother with heart-felt passion, would never let him down- yet still he has trouble letting out his feelings to him.
"Well, you'll just have to keep talking to me then," I said.
And hugged him tightly.
Yes, I think I'll still have to be his emotional catcher. It'll take my mind off me, I guess, and that might be a good thing. It'll make me feel that I still have my uses, even if I'm lying in bed like a beached and lopsided whale. Nobody likes feeling useless. Maybe his emotional limits are my get-out-of-jail card; maybe his need for me will save me from self-pity.
So we lay in bed holding hands for a while, just being together. We got up and hit the chores, and I tried unsuccessfully not to feel angry that, just as I felt healed enough to do some of the normal things I do, I was heading back for round two of surgery.
I waved him off to the cattle farm and saw that his forehead was smooth, the smile was genuine, his eyes were deep brown and glossy again instead of the furious, opaque black I'd seen for the last few weeks.
We will get through this. I know we will.
Tuesday, November 6, 2012
The woman in the mirror
You know me. I always want to check the signposts, to have a handle on where we're going with this crazy ride. I haven't even had my poor old breast cut off yet, but already my head is full of what happens next.
I mean, that's probably a tribute to Dr Goodguy. I'm completely confident that the surgery will go well next Monday. In theory, when I'm thinking completely pragmatically, I'd suspect it's simpler and quicker to cut a breast right off than to selectively chop, and change, and rearrange.
The rest of the nodes might be trickier, of course, given that he has to excavate further up my armpit. (Ouch. That's my armpit I'm talking about. And my breast, for that matter.)
But really, how bad can it be? After to talking to the anaesthetist today, I'm pretty sure that I'll have less pain after the next procedure than I've had this week (the narcotics have been a bit of a fizzer, to tell the truth). He's going to use a paravertebral block, a newish technique which will let me give myself direct squirts of anaesthetic like a junkie let loose in the pharmacy. Woohoo! Party time!
(Just kidding. I think.)
Of course there's the emotional stuff too, but I can't get near it. I've looked at the woman in the mirror, the one with the rather amazing cleavage that's been a bit of a signature tune all her life. She can't get too close to how she feels about losing her breast yet; it's all somewhere over there, in the future, and she's keeping it there.
Because she knows it's not really a choice that she's making.
Oh, she's aware that she's going to go down like a ton of bricks at some stage after the operation, when the mirror shows someone else looking out- someone with only half of the usual curves. She's squinted her eyes and tried to see what that other woman will look like; she can nearly see her already.
That other woman, over there in the future, looks strange. Looks sad. Of course she does. But the woman on this side of the glass just sees that she's alive.
And then turns away to look for the next signpost.
************************
Chemotherapy, this way.
The Bear is haunted by visions of what it did to his last partner, which started with hair loss and ended with diabetic coma. I keep reminding him that that was 13 years ago, and things have come a long way since then; people don't spend the whole twelve weeks getting up close and personal with their Caroma ceramicware any more.
Not usually, anyway.
We'll get a booklet of signs to look for, that warn of trouble ahead. And at the first sign of any glitches my Breast Care Nurse, Monica, will come all the way out here to help. And I get a official permission to be a hermit, to avoid infection- hey, that's my natural state. No problem!
So I'm talking myself into believing how doable it all is. I mean, it starts with just four treatment sessions, each three weeks apart. Four days of being poisoned- how hard can it be?
Followed by a similar round a bit later, if things are going as planned. So, eight days of my life.
Taken one day at a time, it doesn't sound that terrible really.
Best case scenario is I'll get flu-like symptoms a few days after the treatment- aching arms and legs, extreme fatigue, that sort of stuff. The nausea can usually be controlled pretty well these days. The dosages are more fine-tuned. The anti-emetic drugs are better.
I'll be fine.
Probably right up till about week three, when my hair starts to drop out.
And my eyebrows.
And maybe even my eyelashes.
I can't even begin to imagine what the woman in the mirror will look like without those long, curly black eyelashes.
I suppose I could just turn the damn mirror to the wall till they grow back.
****************
Monica, bless her generous heart, spent a whole two hours with Jools and me today, talking about everything from ribbed fingernails to lymphatic massage. There's a stupid amount of information to absorb, so it's far better I start the learning early, before I really need to know it all. I understand everything perfectly when I'm told it; then we go on to another topic, and another, and another, and my head starts to spin and I go home and think "What the f@#$ was that all about again?"
Which is where Jools is an angel from heaven. She protests that I make her sound like a cross between Mother Teresa and Patch Adams in this blog, but that's because she is. I don't know how people manage having cancer without someone like her to deal with the paperwork and the information overload. I don't know how they cope.
I mean, seriously. In the last two days she has:
1. Catalogued and labelled all my cancer paperwork- bills, treatment information, Centrelink stuff, scripts, Cancer Council leaflets, appointment information, pathology results, you name it. I swear there is a whole forest cut down every time someone gets breast cancer, and I can now actually find the exact twig, branch or tree I need at any given moment.
2. Rung all the people I needed to ring to find out about my treatment, financial support while I'm sick, medical benefits and god knows what else. (You KNOW how I feel about phones.) I can't even remember who else she rang, but she was on the phone for hours and a large part of it was to Centrelink. Five minutes talking to Centrelink is enough to make me homicidal, yet she's managed to find out what financial support I can get and how to do it without so much as reaching for a sidearm.
3. Driven me all around town twice, accompanied me to umpteen appointments, listened, asked intelligent questions that I either meant to ask and forgot or never would have thought of, remembered everything and explained it all to me later when my own brain resembled a Cancer McFlurry.
4. Talked me through numerous moments (half hours?) of overwhelm. (I like that word.) Recognised when I'd had enough and, instead of being hurt by my snippishness, just taken me home.
5. Cooked yummy stuff for next week and put it in the freezer, as well as making our evening meals.
6. Made sure I eat sensible stuff regularly and take my medication on time.
7. Adjusted my medication so it works better.
Look, I could go on and on, but you get the general idea. I would be totally screwed if she hadn't turned up when she did. And on top of all that, this morning Monica lent us a 3cm-thick textbook that would answer many of our questions about the breast cancer journey. By this evening Jools had read it from cover to cover so she could be ready to talk it over with me tomorrow.
Tomorrow night she goes home. That's going to be hard. We're women, so of course we've talked over and over about what happens on Monday and how I'll feel, but crunch time isn't quite here yet; I'm not actually feeling it yet. That other woman is still hiding behind the looking glass.
When she turns up and stares out at me for the first time, my god how I'm going to miss my Jools.
***********************
The Bear is struggling with the woman in the mirror more than I am.
"You've never looked so beautiful as you do right now," he said quietly to me tonight, when I was in the middle of telling him animatedly about the improvements in chemo and the wig library (que? Wig library? Yes, there is such a thing) and the team of ladies who show you how to draw your eyebrows on so you don't end up looking like a carnival clown.
It's so bloody hard when he cries, but I know how much he needs to.
"I'll look beautiful again one day," I said, trying to comfort him. Knowing how hollow it sounded.
"You always look beautiful to me," he said; but I was sitting there with my shirt open in the evening breeze, and I could see where he was looking.
"We just have to be patient," I said. Trying not to crack up too. "I'm going to get through this."
"We're going to get through this," he said.
I mean, that's probably a tribute to Dr Goodguy. I'm completely confident that the surgery will go well next Monday. In theory, when I'm thinking completely pragmatically, I'd suspect it's simpler and quicker to cut a breast right off than to selectively chop, and change, and rearrange.
The rest of the nodes might be trickier, of course, given that he has to excavate further up my armpit. (Ouch. That's my armpit I'm talking about. And my breast, for that matter.)
But really, how bad can it be? After to talking to the anaesthetist today, I'm pretty sure that I'll have less pain after the next procedure than I've had this week (the narcotics have been a bit of a fizzer, to tell the truth). He's going to use a paravertebral block, a newish technique which will let me give myself direct squirts of anaesthetic like a junkie let loose in the pharmacy. Woohoo! Party time!
(Just kidding. I think.)
Of course there's the emotional stuff too, but I can't get near it. I've looked at the woman in the mirror, the one with the rather amazing cleavage that's been a bit of a signature tune all her life. She can't get too close to how she feels about losing her breast yet; it's all somewhere over there, in the future, and she's keeping it there.
Because she knows it's not really a choice that she's making.
Oh, she's aware that she's going to go down like a ton of bricks at some stage after the operation, when the mirror shows someone else looking out- someone with only half of the usual curves. She's squinted her eyes and tried to see what that other woman will look like; she can nearly see her already.
That other woman, over there in the future, looks strange. Looks sad. Of course she does. But the woman on this side of the glass just sees that she's alive.
And then turns away to look for the next signpost.
************************
Chemotherapy, this way.
The Bear is haunted by visions of what it did to his last partner, which started with hair loss and ended with diabetic coma. I keep reminding him that that was 13 years ago, and things have come a long way since then; people don't spend the whole twelve weeks getting up close and personal with their Caroma ceramicware any more.
Not usually, anyway.
We'll get a booklet of signs to look for, that warn of trouble ahead. And at the first sign of any glitches my Breast Care Nurse, Monica, will come all the way out here to help. And I get a official permission to be a hermit, to avoid infection- hey, that's my natural state. No problem!
So I'm talking myself into believing how doable it all is. I mean, it starts with just four treatment sessions, each three weeks apart. Four days of being poisoned- how hard can it be?
Followed by a similar round a bit later, if things are going as planned. So, eight days of my life.
Taken one day at a time, it doesn't sound that terrible really.
Best case scenario is I'll get flu-like symptoms a few days after the treatment- aching arms and legs, extreme fatigue, that sort of stuff. The nausea can usually be controlled pretty well these days. The dosages are more fine-tuned. The anti-emetic drugs are better.
I'll be fine.
Probably right up till about week three, when my hair starts to drop out.
And my eyebrows.
And maybe even my eyelashes.
I can't even begin to imagine what the woman in the mirror will look like without those long, curly black eyelashes.
I suppose I could just turn the damn mirror to the wall till they grow back.
****************
Monica, bless her generous heart, spent a whole two hours with Jools and me today, talking about everything from ribbed fingernails to lymphatic massage. There's a stupid amount of information to absorb, so it's far better I start the learning early, before I really need to know it all. I understand everything perfectly when I'm told it; then we go on to another topic, and another, and another, and my head starts to spin and I go home and think "What the f@#$ was that all about again?"
Which is where Jools is an angel from heaven. She protests that I make her sound like a cross between Mother Teresa and Patch Adams in this blog, but that's because she is. I don't know how people manage having cancer without someone like her to deal with the paperwork and the information overload. I don't know how they cope.
I mean, seriously. In the last two days she has:
1. Catalogued and labelled all my cancer paperwork- bills, treatment information, Centrelink stuff, scripts, Cancer Council leaflets, appointment information, pathology results, you name it. I swear there is a whole forest cut down every time someone gets breast cancer, and I can now actually find the exact twig, branch or tree I need at any given moment.
2. Rung all the people I needed to ring to find out about my treatment, financial support while I'm sick, medical benefits and god knows what else. (You KNOW how I feel about phones.) I can't even remember who else she rang, but she was on the phone for hours and a large part of it was to Centrelink. Five minutes talking to Centrelink is enough to make me homicidal, yet she's managed to find out what financial support I can get and how to do it without so much as reaching for a sidearm.
3. Driven me all around town twice, accompanied me to umpteen appointments, listened, asked intelligent questions that I either meant to ask and forgot or never would have thought of, remembered everything and explained it all to me later when my own brain resembled a Cancer McFlurry.
4. Talked me through numerous moments (half hours?) of overwhelm. (I like that word.) Recognised when I'd had enough and, instead of being hurt by my snippishness, just taken me home.
5. Cooked yummy stuff for next week and put it in the freezer, as well as making our evening meals.
6. Made sure I eat sensible stuff regularly and take my medication on time.
7. Adjusted my medication so it works better.
Look, I could go on and on, but you get the general idea. I would be totally screwed if she hadn't turned up when she did. And on top of all that, this morning Monica lent us a 3cm-thick textbook that would answer many of our questions about the breast cancer journey. By this evening Jools had read it from cover to cover so she could be ready to talk it over with me tomorrow.
Tomorrow night she goes home. That's going to be hard. We're women, so of course we've talked over and over about what happens on Monday and how I'll feel, but crunch time isn't quite here yet; I'm not actually feeling it yet. That other woman is still hiding behind the looking glass.
When she turns up and stares out at me for the first time, my god how I'm going to miss my Jools.
***********************
The Bear is struggling with the woman in the mirror more than I am.
"You've never looked so beautiful as you do right now," he said quietly to me tonight, when I was in the middle of telling him animatedly about the improvements in chemo and the wig library (que? Wig library? Yes, there is such a thing) and the team of ladies who show you how to draw your eyebrows on so you don't end up looking like a carnival clown.
It's so bloody hard when he cries, but I know how much he needs to.
"I'll look beautiful again one day," I said, trying to comfort him. Knowing how hollow it sounded.
"You always look beautiful to me," he said; but I was sitting there with my shirt open in the evening breeze, and I could see where he was looking.
"We just have to be patient," I said. Trying not to crack up too. "I'm going to get through this."
"We're going to get through this," he said.
Monday, November 5, 2012
Riding the Wild Mouse
The week from hell is finally over. The rides at this week's show have beaten several world records for incline, shock value and sheer terror. Now that I've got off and stopped shaking, I think things are looking up.
But it's been a doozy. There have been several moments this week when I've been reminded of a ride I took on The Wild Mouse at the Easter Show when I was eight years old. That adventure is etched on my memory largely because it was bowel-cleansingly hideous, consisting entirely of being taken to a great height and almost thrown off the edge. Over, and over, and over.
Of course, on The Wild Mouse nobody died, despite being hurtled at speed towards nothingness. At the absolute last moment, the car would jerk sickeningly around the corner, while momentum forced all the screaming riders to continue straight ahead towards the void. Only our flimsy seat belts (it seemed) dragged us back to the trajectory of the car, eventually, as it bolted towards yet another 90 degree bend.
And this week, I didn't die either. But hell's bells, there was moment after moment when my heart got thrown right out of the roller coaster car and took the plunge, and I truly feared I was doomed.
*****************
I did manage to sleep the night after the bone scan, probably largely because Jools took over the management of my medication. It's all very well to send the patient merrily off home from hospital with half a breast, a reamed armpit and a neat little package of drugs, but it's another to be sure they've absorbed the finer details of taking it. Especially if whoever wrote the damn script prescribed exactly 50% of what Dr Goodguy was intending.
Gotta love hospital communication. Not really surprising that I'd been waking up before dawn in so much agony I could barely reach for the pills, let alone consider getting up to find some food to take them with.
And then there's the side effects. It was only when Jools started reading the fine print that we worked out that my nausea, anxiety and fits of inexplicable shaking were all recognised fringe benefits of the narcotic. FFS, I was well before all this treatment, and now I felt sick and out of control.
After the shock of the pathology results, I finished up the week with a few days of total torture knowing that things might be a lot grimmer than we'd anticipated, and waiting for the results of the bone scan. Thank god for the internet; I put out a request for nausea remedies, not wanting to put any more drugs in my body after the realisation that I was already being screwed over by them. Thanks to some prompt responses, I soon ended up sniffing sprays of chocolate mint from our garden with the enthusiasm of a coke addict every time my heart started to race or my stomach started to do gymnastic routines.
Followed by some deeeeeep, sloooooow breaths.
See, I'm okay as long as I concentrate on looking this thing in the eye, but you can't look cancer in the eye every waking moment or you go mad. And it's when I take my eye off it that it jumps out from the cupboard of my subconscious, screaming YOU'RE GONNA DIE! like some ghastly Ghost Train skeleton, and I have an immediate panic attack and have to start my calming regime all over again.
The Bear wasn't coping either; he had an attack of I-think-I'll-pretend-it's-not-happening on Saturday and disappeared to work for most of the day, returning in time to self-medicate himself into someplace inaccessible with various common recreational substances. As you do.
Not helpful, though understandable in the circumstances. We Had Words about that. As you do.
By Sunday morning he was sheepish and apologetic, freely admitting to all his sins like the good little Catholic that he totally isn't, and I was sick of riding the Ghost Train. We decided we'd all go out to lunch at the pub and try to forget about the Freeloader for a few hours. I'd done everything I could to smooth the way for Monday, even writing Dr Goodguy an email (what sort of surgeon gives you his email address?! Gotta love that man) to beg him to ring me on Monday as soon as he got the results. Now I needed to leave it alone.
For once Fate was rolling out the red carpet. We had a delightful Sunday drive, enjoyed the blast-from-the-past ferry ride across the glorious Clarence River, got a park literally at the door of the pub. The sun, which had been sulking in its room all weekend in deference to my mood, snuck out from behind the clouds. We walked in and got the best seats in the house, overlooking the river. We ate a perfectly (and I do mean perfectly) cooked platter of fresh local seafood, and my stomach didn't churn once. We looked at the ancient newspapers that paper the walls as we finished our drinks, reading stories from years before we were born and shaking our heads at the old ads that swore by complete bunkum ('a cup of tea, a Bex and a good...' case of renal failure?).
We chattered. We laughed. We reminisced. I felt wonderful.
And then as we were leaving, the Bear innocently made some passing remark about what he had to do on Monday, and the skeleton popped out of the closet and grabbed me by the neck.
Monday. The best part of Sunday was gone, and now all I had to look forward to was a phone call about the bone scan. My heart started to race.
I sniffed desperately at the sprig of mint I'd brought with me. I thought I might suffocate.
I needed the loo, and I needed it now. We stopped at a garage, and I stayed there so long rocking back and forth and trying to breathe that the Bear sent Jools in looking for me.
"I'm okay," I lied.
Got back in the car.
Stopped lying.
"I'm having an anxiety attack," I said.
I usually keep it to myself. If I start talking about not coping, please listen- I'm really in trouble. Asking for help isn't my strong suit.
So we took the bloody Freeloader out of his coffin again and started talking about him, and looking him in the eye, and turning him over, and shaking him upside down to see if anything else fell out of his nasty little pocketsesssssss. Apart from the death threats, that is.
Somewhere along the way I remembered how to breathe, probably around the time the Bear started massaging my feet. (It's very hard to feel terrified when someone's rubbing your toes. You try it.) Thanks to my support crew, I managed to make it home without losing my lunch or getting the shakes.
I reached for the computer the moment I got in, determined to either check in to Facebook for some more moral support from my growing army of allies or just blot out with a mindless game. But my email page opened first, and...
...inexplicably, on a Sunday??, there was a message from Dr Goodguy.
The preview said "Good news is much better to tell. BONE SCAN OK."
And then the whole world changed colour.
"BONE SCAN OKAY," I shouted, before I'd even opened his email.
And then had to spend the next five minutes simultaneously trying to read the whole email and explain to the others how come I'd got this information out of thin air on a Sunday afternoon.
I had no idea. Other than, he's a hell of a good guy. I told you that before.
So the week ended on a high. As my mother famously said when visited by the hospital chaplain after being told of her cancer diagnosis, "I'm not dead yet."
The ride is going to get bumpy again- I know that. But it's the Wild Mouse, isn't it? You only think you're going to die.
And right now, I think I'm not.
But it's been a doozy. There have been several moments this week when I've been reminded of a ride I took on The Wild Mouse at the Easter Show when I was eight years old. That adventure is etched on my memory largely because it was bowel-cleansingly hideous, consisting entirely of being taken to a great height and almost thrown off the edge. Over, and over, and over.
Of course, on The Wild Mouse nobody died, despite being hurtled at speed towards nothingness. At the absolute last moment, the car would jerk sickeningly around the corner, while momentum forced all the screaming riders to continue straight ahead towards the void. Only our flimsy seat belts (it seemed) dragged us back to the trajectory of the car, eventually, as it bolted towards yet another 90 degree bend.
And this week, I didn't die either. But hell's bells, there was moment after moment when my heart got thrown right out of the roller coaster car and took the plunge, and I truly feared I was doomed.
*****************
I did manage to sleep the night after the bone scan, probably largely because Jools took over the management of my medication. It's all very well to send the patient merrily off home from hospital with half a breast, a reamed armpit and a neat little package of drugs, but it's another to be sure they've absorbed the finer details of taking it. Especially if whoever wrote the damn script prescribed exactly 50% of what Dr Goodguy was intending.
Gotta love hospital communication. Not really surprising that I'd been waking up before dawn in so much agony I could barely reach for the pills, let alone consider getting up to find some food to take them with.
And then there's the side effects. It was only when Jools started reading the fine print that we worked out that my nausea, anxiety and fits of inexplicable shaking were all recognised fringe benefits of the narcotic. FFS, I was well before all this treatment, and now I felt sick and out of control.
After the shock of the pathology results, I finished up the week with a few days of total torture knowing that things might be a lot grimmer than we'd anticipated, and waiting for the results of the bone scan. Thank god for the internet; I put out a request for nausea remedies, not wanting to put any more drugs in my body after the realisation that I was already being screwed over by them. Thanks to some prompt responses, I soon ended up sniffing sprays of chocolate mint from our garden with the enthusiasm of a coke addict every time my heart started to race or my stomach started to do gymnastic routines.
Followed by some deeeeeep, sloooooow breaths.
See, I'm okay as long as I concentrate on looking this thing in the eye, but you can't look cancer in the eye every waking moment or you go mad. And it's when I take my eye off it that it jumps out from the cupboard of my subconscious, screaming YOU'RE GONNA DIE! like some ghastly Ghost Train skeleton, and I have an immediate panic attack and have to start my calming regime all over again.
The Bear wasn't coping either; he had an attack of I-think-I'll-pretend-it's-not-happening on Saturday and disappeared to work for most of the day, returning in time to self-medicate himself into someplace inaccessible with various common recreational substances. As you do.
Not helpful, though understandable in the circumstances. We Had Words about that. As you do.
By Sunday morning he was sheepish and apologetic, freely admitting to all his sins like the good little Catholic that he totally isn't, and I was sick of riding the Ghost Train. We decided we'd all go out to lunch at the pub and try to forget about the Freeloader for a few hours. I'd done everything I could to smooth the way for Monday, even writing Dr Goodguy an email (what sort of surgeon gives you his email address?! Gotta love that man) to beg him to ring me on Monday as soon as he got the results. Now I needed to leave it alone.
For once Fate was rolling out the red carpet. We had a delightful Sunday drive, enjoyed the blast-from-the-past ferry ride across the glorious Clarence River, got a park literally at the door of the pub. The sun, which had been sulking in its room all weekend in deference to my mood, snuck out from behind the clouds. We walked in and got the best seats in the house, overlooking the river. We ate a perfectly (and I do mean perfectly) cooked platter of fresh local seafood, and my stomach didn't churn once. We looked at the ancient newspapers that paper the walls as we finished our drinks, reading stories from years before we were born and shaking our heads at the old ads that swore by complete bunkum ('a cup of tea, a Bex and a good...' case of renal failure?).
We chattered. We laughed. We reminisced. I felt wonderful.
And then as we were leaving, the Bear innocently made some passing remark about what he had to do on Monday, and the skeleton popped out of the closet and grabbed me by the neck.
Monday. The best part of Sunday was gone, and now all I had to look forward to was a phone call about the bone scan. My heart started to race.
I sniffed desperately at the sprig of mint I'd brought with me. I thought I might suffocate.
I needed the loo, and I needed it now. We stopped at a garage, and I stayed there so long rocking back and forth and trying to breathe that the Bear sent Jools in looking for me.
"I'm okay," I lied.
Got back in the car.
Stopped lying.
"I'm having an anxiety attack," I said.
I usually keep it to myself. If I start talking about not coping, please listen- I'm really in trouble. Asking for help isn't my strong suit.
So we took the bloody Freeloader out of his coffin again and started talking about him, and looking him in the eye, and turning him over, and shaking him upside down to see if anything else fell out of his nasty little pocketsesssssss. Apart from the death threats, that is.
Somewhere along the way I remembered how to breathe, probably around the time the Bear started massaging my feet. (It's very hard to feel terrified when someone's rubbing your toes. You try it.) Thanks to my support crew, I managed to make it home without losing my lunch or getting the shakes.
I reached for the computer the moment I got in, determined to either check in to Facebook for some more moral support from my growing army of allies or just blot out with a mindless game. But my email page opened first, and...
...inexplicably, on a Sunday??, there was a message from Dr Goodguy.
The preview said "Good news is much better to tell. BONE SCAN OK."
And then the whole world changed colour.
"BONE SCAN OKAY," I shouted, before I'd even opened his email.
And then had to spend the next five minutes simultaneously trying to read the whole email and explain to the others how come I'd got this information out of thin air on a Sunday afternoon.
I had no idea. Other than, he's a hell of a good guy. I told you that before.
So the week ended on a high. As my mother famously said when visited by the hospital chaplain after being told of her cancer diagnosis, "I'm not dead yet."
The ride is going to get bumpy again- I know that. But it's the Wild Mouse, isn't it? You only think you're going to die.
And right now, I think I'm not.
Saturday, November 3, 2012
The Blackbird Syndrome, and some hamsters
You're probably wondering if this post is about some new cancer symptom I've developed. I suppose that's true to some extent. When something goes very pear-shaped in one's life- and believe me, a life-threatening cancer is about as pear-shaped as things can get- one really does gain a new understanding of the Blackbird Syndrome.
Bloggers know all about it, too. If you want to get a high number of 'hits' (which for the uninitiated means 'lots of people viewing what you've written'), you need to attract the blackbirds.
How to do that is common knowledge.
1. Use a pretty picture.
2. Don't write too much text.
3. Above all- don't go too deep.
Make it eye-catching rather than thought-provoking, and the blackbirds will pick it up and add it to their collection of bright shiny things, before moving on quickly to the next glittering prize. (See: Pinterest. Lots of hits. Not much genuine human connection.)
Well, here you are reading my cancer blog.
1. No pictures to speak of.
2. Lots of complex text.
3. A hell of a lot of deep, and sometimes troubling, thought.
I'm not exactly holding my breath on the stats.
So if you're here reading this, either you're no blackbird (and maybe never have been), or you're a blackbird who's just embarked on a very difficult and challenging journey towards deeper thought- out of respect for me. And so I have the greatest respect for you, my readers. This isn't exactly an airport novel, but you're here struggling through it, experiencing my journey with me.
The true blackbirds are not here. When you have cancer, the blackbirds drop away. Some people just avoid you. Some manufacture a reason not to keep in touch. It's too confronting for them; they desperately want to believe that life is bright, and shiny, and unrelentingly hopeful. That life is just a jewellery box full of sparkling trinkets.
If they come face to face with you by chance, they'll say things like "You'll be right," or "You're looking well," or (god help them) "Everything happens for a reason" (smiiiiiile!!). They'll skilfully terminate any conversation about the deeper issues, or try to 'comfort' you with more hokey sound bites.
And you'll probably want to drop them with a bit of 4x2 the moment they turn away.
And then you'll take a deep breath and start to mourn, because your 'friendship' was made of nothing more substantial than feathers and air and loud cawing.
I'm not actually afraid of dying, if that's how this story ends. What I'm afraid of- one of the reasons I dread finding out the results of the bone scan- is that any seeming loss of hope for my recovery would flush out the blackbirds in my life. That would be a crashing and heart-breaking disappointment to me, I know. The remaining blackbirds would fly away without looking back.
(It would also, of course, force another hard reality check on those who've had the courage to travel with me. And I don't want you beautiful people to suffer, either.)
Writing the blog has saved me so many confrontational moments like that. I see who's reading it, and who simply won't pick it up. (I've had some surprises there.) Sometimes I see who's struggling, because they tell me so, and I hold out my hand to them if I can.
It's hard to stop being a blackbird. It hurts. I respect those people's struggle with my blog.
Maybe you're now thinking "Shit, am I a blackbird? I said some really stupidly positive things at the start of this, and I was wrong..."
Well STOP that right now. You're still here, so you're not a blackbird.
Let's just make that a little clearer, so you know you said things that were just fine- even if they now seem to have been wrong. I'm not saying that there's no place for positive thinking in my recovery.
Look at this.
My son sent me a link to this article from New Scientist about an experiment on hamsters, which has shown that believing in a positive outcome contributes to better immune function. To summarise the article: if Siberian hamsters are fooled into believing it's summer by scientists (who manipulate the lights to mimic the appropriate length of day and night), and so believe that they have a greater chance of surviving their illness than they would have had in winter (due to better weather and better availability of food), their immune system kicks in to make them get better more quickly.
Even if, actually, it's not summer at all. Even if they don't get better weather and more food.
So all your positive thoughts and support, which boost my spirits amazingly, are actually helping me to believe I can get better- which is actually contributing to my chance of getting better.
Please don't think I'm telling you to stop saying positive things! I'm not!
What I AM saying is that I recognise how hard it is for some of you to get through the desire to believe only in the bright and shiny, to avoid the temptation of the trite and to connect with me here about the dark reality (and deal with the demons that brings up for you about your own mortality), and then to come out the other side saying something that is actually helpful to me.
That is a huge journey for you to undertake. For taking that journey, I thank you with all my heart.
And what about my own beliefs? Am I helping my own immune system?
My friend Vi is coming to help out once Jools goes home. Let me be completely open with you and admit that Vi and I share a certain amount of psychic power. Both of us, occasionally, see things that haven't happened yet. Both of us know when we're seeing something that hasn't happened yet.
We both tend to put it down to quantum physics and unexplained characteristics of the universe, not so much to ghosts or the supernatural. But we know from experience that there are more things in heaven and Earth, Horatio, than are dreamed of in some philosophies or than can be explained by coincidence.
Vi told me, before I knew I was sick, that I had a long life- but with a huge cross to bear which might be illness. It was something she saw, in that way that we both understand.
After I was diagnosed, she saw that I would be okay. I would survive this. She maintains this vehemently every time I speak to her.
I choose to trust in what she saw. My own gut feeling is that I will survive this. Every time I get a bad result, it shakes me to the core and I doubt my belief- I blog about it and process it- and then I breathe deeply, talk to Vi or Jools or to my inner self, and get back to believing.
I may need to do a lot of deep breathing and shoring up my belief when I get the next set of results. You can help me. All together now!
It's summer. Do you hear me? It's summer.
Bloggers know all about it, too. If you want to get a high number of 'hits' (which for the uninitiated means 'lots of people viewing what you've written'), you need to attract the blackbirds.
How to do that is common knowledge.
1. Use a pretty picture.
2. Don't write too much text.
3. Above all- don't go too deep.
Make it eye-catching rather than thought-provoking, and the blackbirds will pick it up and add it to their collection of bright shiny things, before moving on quickly to the next glittering prize. (See: Pinterest. Lots of hits. Not much genuine human connection.)
Well, here you are reading my cancer blog.
1. No pictures to speak of.
2. Lots of complex text.
3. A hell of a lot of deep, and sometimes troubling, thought.
I'm not exactly holding my breath on the stats.
So if you're here reading this, either you're no blackbird (and maybe never have been), or you're a blackbird who's just embarked on a very difficult and challenging journey towards deeper thought- out of respect for me. And so I have the greatest respect for you, my readers. This isn't exactly an airport novel, but you're here struggling through it, experiencing my journey with me.
The true blackbirds are not here. When you have cancer, the blackbirds drop away. Some people just avoid you. Some manufacture a reason not to keep in touch. It's too confronting for them; they desperately want to believe that life is bright, and shiny, and unrelentingly hopeful. That life is just a jewellery box full of sparkling trinkets.
If they come face to face with you by chance, they'll say things like "You'll be right," or "You're looking well," or (god help them) "Everything happens for a reason" (smiiiiiile!!). They'll skilfully terminate any conversation about the deeper issues, or try to 'comfort' you with more hokey sound bites.
And you'll probably want to drop them with a bit of 4x2 the moment they turn away.
And then you'll take a deep breath and start to mourn, because your 'friendship' was made of nothing more substantial than feathers and air and loud cawing.
I'm not actually afraid of dying, if that's how this story ends. What I'm afraid of- one of the reasons I dread finding out the results of the bone scan- is that any seeming loss of hope for my recovery would flush out the blackbirds in my life. That would be a crashing and heart-breaking disappointment to me, I know. The remaining blackbirds would fly away without looking back.
(It would also, of course, force another hard reality check on those who've had the courage to travel with me. And I don't want you beautiful people to suffer, either.)
Writing the blog has saved me so many confrontational moments like that. I see who's reading it, and who simply won't pick it up. (I've had some surprises there.) Sometimes I see who's struggling, because they tell me so, and I hold out my hand to them if I can.
It's hard to stop being a blackbird. It hurts. I respect those people's struggle with my blog.
Maybe you're now thinking "Shit, am I a blackbird? I said some really stupidly positive things at the start of this, and I was wrong..."
Well STOP that right now. You're still here, so you're not a blackbird.
Let's just make that a little clearer, so you know you said things that were just fine- even if they now seem to have been wrong. I'm not saying that there's no place for positive thinking in my recovery.
Look at this.
My son sent me a link to this article from New Scientist about an experiment on hamsters, which has shown that believing in a positive outcome contributes to better immune function. To summarise the article: if Siberian hamsters are fooled into believing it's summer by scientists (who manipulate the lights to mimic the appropriate length of day and night), and so believe that they have a greater chance of surviving their illness than they would have had in winter (due to better weather and better availability of food), their immune system kicks in to make them get better more quickly.
Even if, actually, it's not summer at all. Even if they don't get better weather and more food.
So all your positive thoughts and support, which boost my spirits amazingly, are actually helping me to believe I can get better- which is actually contributing to my chance of getting better.
Please don't think I'm telling you to stop saying positive things! I'm not!
What I AM saying is that I recognise how hard it is for some of you to get through the desire to believe only in the bright and shiny, to avoid the temptation of the trite and to connect with me here about the dark reality (and deal with the demons that brings up for you about your own mortality), and then to come out the other side saying something that is actually helpful to me.
That is a huge journey for you to undertake. For taking that journey, I thank you with all my heart.
And what about my own beliefs? Am I helping my own immune system?
My friend Vi is coming to help out once Jools goes home. Let me be completely open with you and admit that Vi and I share a certain amount of psychic power. Both of us, occasionally, see things that haven't happened yet. Both of us know when we're seeing something that hasn't happened yet.
We both tend to put it down to quantum physics and unexplained characteristics of the universe, not so much to ghosts or the supernatural. But we know from experience that there are more things in heaven and Earth, Horatio, than are dreamed of in some philosophies or than can be explained by coincidence.
Vi told me, before I knew I was sick, that I had a long life- but with a huge cross to bear which might be illness. It was something she saw, in that way that we both understand.
After I was diagnosed, she saw that I would be okay. I would survive this. She maintains this vehemently every time I speak to her.
I choose to trust in what she saw. My own gut feeling is that I will survive this. Every time I get a bad result, it shakes me to the core and I doubt my belief- I blog about it and process it- and then I breathe deeply, talk to Vi or Jools or to my inner self, and get back to believing.
I may need to do a lot of deep breathing and shoring up my belief when I get the next set of results. You can help me. All together now!
It's summer. Do you hear me? It's summer.
Thursday, November 1, 2012
Vertigo
I woke up this morning with the coping tank reading 'empty'. It was one of those mornings when all I wanted to do was pull the sheet over my head and shout at everyone who came near me "Go away, I have cancer."
You get that.
Up till now, I've been coping okay with the big things. The diagnosis. The tests. The surgery. But I think it might be a cumulative process for me, one in which cracks start to appear around the edges before there's an implosion.
The prospect of the bone scan, with yet another wait for results culminating in yet another hideously time-warped moment between the doctor opening his mouth and the message reaching me- yes? no? live? die? - was pretty much the last straw today. Crack number one was realising I'd woken up nauseated again, probably partly due to anxiety and partly due to the narcotic painkillers that I'd been taking on an empty stomach (because, of course, I've been too nauseated to eat anything much).
That's a vicious circle from which there's no escape, unless someone kind takes you in hand and puts food in front of you. (Preferably with a bit of attitude.)
And that's what best friends are for, especially best friends with a medical degree and a lot of attitude about food issues. I cursed Jools, silently, for putting a bowl of cereal and fruit under my nose, even though I'd reluctantly agreed to it five minutes earlier. When it appeared, I felt like flushing it down the loo.
But because she's my friend, I forced it down anyway. And of course it helped, eventually, as my brain knew it would- but my inner toddler didn't appreciate it at the time.
Then, crack number two. There was a sudden strong gust of wind, the screen blew out of the window and the beautiful vase full of flowers I'd been given upended itself onto the floor, scattering water and bruised blooms everywhere.
That just about finished me. That was about as close as I've come to having a full-blown tantrum worthy of a two-year-old. The whole bloody world was against me, including nature. Nothing was fair. The expletives flew. And I was buggered if I was cleaning up the mess.
I stomped away to have a hot shower, and bugger not wetting the dressings too. The whole damn breast was going to come off anyway, so who cares?
The Bear and Jools had it sorted by the time I emerged, sodden and somewhat chastened. I tried to thank them graciously, but probably failed. The squadron of airforce helicopters had returned to my stomach and I couldn't hear myself talk over their racket.
You're going to die, you're going to die, you're going to die.
I got dressed. I got in the car. I accepted a kiss from the Bear, trying not to be sullen. Jools drove me to my appointment.
We talked about some pretty heavy stuff on the way.
See, the thing about my best friend is that she's so damn patient with me, and such a damn good listener. If I say something provocative, she just pulls a little bit more information out of me, and a little bit more, all without any judgment, until my emotional entrails are draped all over the place and she can start cleaning them off and piling them back inside me in a much tidier heap. By the time we got to the hospital I'd admitted to some stuff that hasn't got much of an airing here on the blog.
Like, what my fear of the bone scan is about. Like, my terror of losing hope, of being plunged into a pit that I can't climb out of. My nausea is mostly vertigo, from standing on the edge of that pit swaying, waiting to be shoved in.
See, that's probably why I tend to anticipate the worst and try to stare it down, instead of adopting the 100% sunny, positive-energy attitude that everything will be fine. I'd rather climb down a little into the pit. It's less far to fall.
From halfway down, you can see both the bottom and the top. But this morning, all I could see was how deep that pit was.
***************
Something odd happened to me while I was in the anteroom getting my injection of radioactive calcium. It was the same girl who looked after me last time, a very young woman with a sweet attitude and a nice line in clear communication. She didn't deserve my bad mood, so I swept it quickly under the mat and put my smile back on.
We bantered. We laughed. She told me everything I needed to know about what was happening here.
I took back my power then. I looked her in the eye as I went out of the room, and told her she was very damn good at her job. I think she was a little surprised; maybe people don't say that stuff much when they're so weighed down and tossed sideways by their vertigo. Her eyes twinkled, though.
The odd thing was how much better I felt, straight away. I hadn't even had the pictures taken yet, let alone heard the results. But just trying to make someone else's day better had healed my spirit. It was such good medicine.
I think that will be my personal cancer remedy, taken daily. Whose day can I improve today? It has to be honest, it has to be deserved, but I think if I look hard enough I'll be able to find someone to praise every day.
Someone who's not expecting it, preferably.
*******************
Everything looked up after that. We had two hours to kill while the calcium turned me into a Hallowe'en skeleton (ooh look, it glows!), so after I'd had Stern Words with the Freeloader ("Did you leave any replicants behind? They're about to be outed, mate...") we went for a bit of a walk, did a bit of window shopping, headed to the supermarket to find something I might actually feel like eating.
I felt like a two tonne truck had been lifted off my shoulders.
At the checkout I tried to grab the first carry bag.
"You can't carry any heavy bags; you've got cancer," declared Jools. Eyes twinkling.
We both exploded into giggles.
Outside, she added "Do you mind me outing you like that?"
"Not at all," I replied. "I want people to talk about it."
And so that became our standing joke of the day.
"I can use the disabled toilet," I said bullishly in the corridor. "I have cancer."
More giggles.
Back in the photo booth, I lay in the sandwich-press-come-blender thingy again and watched it turn me into something off a Hallowe'en t-shirt on the screen above.
"I'm not an expert in this, and I'm looking at a very small picture there, but it all looks beautiful to me," said Jools.
And as I stood at the desk waiting to pay,
"You realise that you'll never be asked to give blood? That could be an advantage," said Jools.
"Why not?" said I, expecting some crack related to my radioactive status. I mean, this was the woman who'd told me while we sat in the cafe downstairs that I was looking radiant.
"You have cancer," said she, and we started to laugh again.
The girl behind the desk looked up and laughed too.
"Is that true?" she said. "You can't give blood?"
"Yes," said Jools.
"That lets me out too, then," she said. "I just got diagnosed."
She was a lot younger than me. At least 15 years younger, at a guess; maybe more. We chatted cheerily for a while then, about all the things we could no longer be asked to do. Because we have cancer.
And you know, whether we have it or not, we should surely be talking about it freely. One in eight women. More and more men. We need to be talking about breast cancer- all of us. Any of us could be next to fall into the pit. If we're watching where we're going, maybe it won't catch us so much by surprise.
And if we're talking about it instead of having nightmares about it, and if we keep trying to take back our power by making other people's days a little bit better instead of staring at our own sad navels, maybe we won't get so paralysed by vertigo.
I'm certainly going to try it.
You get that.
Up till now, I've been coping okay with the big things. The diagnosis. The tests. The surgery. But I think it might be a cumulative process for me, one in which cracks start to appear around the edges before there's an implosion.
The prospect of the bone scan, with yet another wait for results culminating in yet another hideously time-warped moment between the doctor opening his mouth and the message reaching me- yes? no? live? die? - was pretty much the last straw today. Crack number one was realising I'd woken up nauseated again, probably partly due to anxiety and partly due to the narcotic painkillers that I'd been taking on an empty stomach (because, of course, I've been too nauseated to eat anything much).
That's a vicious circle from which there's no escape, unless someone kind takes you in hand and puts food in front of you. (Preferably with a bit of attitude.)
And that's what best friends are for, especially best friends with a medical degree and a lot of attitude about food issues. I cursed Jools, silently, for putting a bowl of cereal and fruit under my nose, even though I'd reluctantly agreed to it five minutes earlier. When it appeared, I felt like flushing it down the loo.
But because she's my friend, I forced it down anyway. And of course it helped, eventually, as my brain knew it would- but my inner toddler didn't appreciate it at the time.
Then, crack number two. There was a sudden strong gust of wind, the screen blew out of the window and the beautiful vase full of flowers I'd been given upended itself onto the floor, scattering water and bruised blooms everywhere.
That just about finished me. That was about as close as I've come to having a full-blown tantrum worthy of a two-year-old. The whole bloody world was against me, including nature. Nothing was fair. The expletives flew. And I was buggered if I was cleaning up the mess.
I stomped away to have a hot shower, and bugger not wetting the dressings too. The whole damn breast was going to come off anyway, so who cares?
The Bear and Jools had it sorted by the time I emerged, sodden and somewhat chastened. I tried to thank them graciously, but probably failed. The squadron of airforce helicopters had returned to my stomach and I couldn't hear myself talk over their racket.
You're going to die, you're going to die, you're going to die.
I got dressed. I got in the car. I accepted a kiss from the Bear, trying not to be sullen. Jools drove me to my appointment.
We talked about some pretty heavy stuff on the way.
See, the thing about my best friend is that she's so damn patient with me, and such a damn good listener. If I say something provocative, she just pulls a little bit more information out of me, and a little bit more, all without any judgment, until my emotional entrails are draped all over the place and she can start cleaning them off and piling them back inside me in a much tidier heap. By the time we got to the hospital I'd admitted to some stuff that hasn't got much of an airing here on the blog.
Like, what my fear of the bone scan is about. Like, my terror of losing hope, of being plunged into a pit that I can't climb out of. My nausea is mostly vertigo, from standing on the edge of that pit swaying, waiting to be shoved in.
See, that's probably why I tend to anticipate the worst and try to stare it down, instead of adopting the 100% sunny, positive-energy attitude that everything will be fine. I'd rather climb down a little into the pit. It's less far to fall.
From halfway down, you can see both the bottom and the top. But this morning, all I could see was how deep that pit was.
***************
Something odd happened to me while I was in the anteroom getting my injection of radioactive calcium. It was the same girl who looked after me last time, a very young woman with a sweet attitude and a nice line in clear communication. She didn't deserve my bad mood, so I swept it quickly under the mat and put my smile back on.
We bantered. We laughed. She told me everything I needed to know about what was happening here.
I took back my power then. I looked her in the eye as I went out of the room, and told her she was very damn good at her job. I think she was a little surprised; maybe people don't say that stuff much when they're so weighed down and tossed sideways by their vertigo. Her eyes twinkled, though.
The odd thing was how much better I felt, straight away. I hadn't even had the pictures taken yet, let alone heard the results. But just trying to make someone else's day better had healed my spirit. It was such good medicine.
I think that will be my personal cancer remedy, taken daily. Whose day can I improve today? It has to be honest, it has to be deserved, but I think if I look hard enough I'll be able to find someone to praise every day.
Someone who's not expecting it, preferably.
*******************
Everything looked up after that. We had two hours to kill while the calcium turned me into a Hallowe'en skeleton (ooh look, it glows!), so after I'd had Stern Words with the Freeloader ("Did you leave any replicants behind? They're about to be outed, mate...") we went for a bit of a walk, did a bit of window shopping, headed to the supermarket to find something I might actually feel like eating.
I felt like a two tonne truck had been lifted off my shoulders.
At the checkout I tried to grab the first carry bag.
"You can't carry any heavy bags; you've got cancer," declared Jools. Eyes twinkling.
We both exploded into giggles.
Outside, she added "Do you mind me outing you like that?"
"Not at all," I replied. "I want people to talk about it."
And so that became our standing joke of the day.
"I can use the disabled toilet," I said bullishly in the corridor. "I have cancer."
More giggles.
Back in the photo booth, I lay in the sandwich-press-come-blender thingy again and watched it turn me into something off a Hallowe'en t-shirt on the screen above.
"I'm not an expert in this, and I'm looking at a very small picture there, but it all looks beautiful to me," said Jools.
And as I stood at the desk waiting to pay,
"You realise that you'll never be asked to give blood? That could be an advantage," said Jools.
"Why not?" said I, expecting some crack related to my radioactive status. I mean, this was the woman who'd told me while we sat in the cafe downstairs that I was looking radiant.
"You have cancer," said she, and we started to laugh again.
The girl behind the desk looked up and laughed too.
"Is that true?" she said. "You can't give blood?"
"Yes," said Jools.
"That lets me out too, then," she said. "I just got diagnosed."
She was a lot younger than me. At least 15 years younger, at a guess; maybe more. We chatted cheerily for a while then, about all the things we could no longer be asked to do. Because we have cancer.
And you know, whether we have it or not, we should surely be talking about it freely. One in eight women. More and more men. We need to be talking about breast cancer- all of us. Any of us could be next to fall into the pit. If we're watching where we're going, maybe it won't catch us so much by surprise.
And if we're talking about it instead of having nightmares about it, and if we keep trying to take back our power by making other people's days a little bit better instead of staring at our own sad navels, maybe we won't get so paralysed by vertigo.
I'm certainly going to try it.
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.
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.
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