There have been times during this trying period of my life when I've felt truly lucky. Weird, right?
Mostly that's when I look around me at other women dealing with the same shit, but without the same medical team. You have to be able to put your faith in your team. Without a team you can trust, you live in constant anxiety.
Are they really as good as they make themselves out to be?
Have they chosen the right treatments for me?
Do they actually give a rat's arse what happens to me, or am I just another random digit in their statistics?
And while some patients fret and tremble, I've been fortunate enough to add yet another quietly competent gun to my locker. The same day that I was able to slot into a cancellation and see my personal therapist, I'd been heading up the coast anyway; finally the stars aligned, and an expert had time to talk to me about testing my genes for BRCA faults.
Some people can exude busy-ness and competence while strolling languidly down the corridor. Such was Professor Darkhorse. He passed me on his way back from lunch as I sat stabbing a trembling finger at my new and mystifying SmartPhone, desperately trying to distract myself from thinking about what a genetic test might reveal, and I knew immediately that this was my man.
Yes, he explained quietly when my turn came, my family history definitely qualified me for a free genetic test. Twice over, actually; the crucial number in NSW is a 10% chance of having a dodgy gene, based on how many close family members have succumbed early to breast or ovarian cancer. My chances of having a faulty bit of wiring in the system, he told me, were over 20%. I'd even have qualified in Queensland, where the parameters are far less generous.
A one-in-five chance of having one of the BRCA genes wasn't actually something that filled my heart with joy. I don't actually want a positive result. Who would? I want a negative result.
But as Darkhorse so clearly and patiently explained, there's no such thing as a negative result.
Great.
I could get a positive result- oh yes. That much is clear-cut, and that would be a signpost for my medical team to tell them where we need to go next to keep me alive.
Enter masked man with scalpel, stage right. Weeping from the gallery.
I could also get a result which shows that I don't have the BRCA 1 or 2 genes, but they don't call it 'negative'. Chances are that, with that sort of family history, I still have a faulty gene- but it's one that hasn't been identified yet. 'Inconclusive' is about as close to negative as I can hope to get.
Sheathe scalpel. Enter roulette wheel.
And then I could get the medical equivalent of 'Hmm, that's odd.' Which translates as having some minor genetic peculiarity picked up which doesn't rate as weird enough to be a mutation, but which will be noted in the statistics and kept on record; if enough people with breast cancer turn out to have that minor peculiarity as time goes on, it might be another risk marker to add to the BRCA genes.
Enter Paranoia, hysterical.
So. Qualifying for the free test is not really such great news. It could herald some hard decisions, or continual nagging uncertainty.
**********************
This is what will happen if my test results come back positive.
The other breast comes off.
Exeunt nipple sensitivity.
The ovaries come out.
Enter madwoman, screaming at shadows.
My reconstruction becomes significantly more complex. Simple mathematics: one stomach flap (ironically, now far less abundant thanks to my cancer-driven healthy living program) divided by two new breast mounds just isn't going to equal two D-cups.
Enter silicone implants; exeunt stomach-sleep. Further weeping from gallery.
Did I mention that cancer sucks?
I have to wait six to eight weeks for the results. I think I shall just try to forget it ever happened. Wish me luck with that.
**********************
In better news, I saw Dr Goodguy yesterday for my six monthly checkup. He was again touchingly pleased to see me looking so well, and quickly gave me an uncompromisingly clean bill of health for the bomb site and my dodgy armpit full of scar tissue.
(Scar tissue can feel distressingly like a lump, to an amateur.)
"And your mammogram and ultrasound came back absolutely fine," he added.
(So those dots I saw when I craned my neck to look at the screen weren't new Freeloader beds after all. They looked the same to me...)
It was all something of a relief; mostly I can get my head involved with other things and forget the nagging worries. But sometimes you wake up at 3am with something aching, and your brain goes nuts.
I'd come to his office straight from my appointment with Miss Sunshine the lymphoedema physio, and she'd gone most of the way towards putting my mind at rest about the nagging pain around my protruding ribs on the left side.
Yeah, protruding. They stick out. You take the weight of a very large breast off your rib cage, and it goes whoopee! Let's party! and expands to the point where it's pulling the hell out of the muscles that keep it in place- and to top all that, you keep bumping it on things. Not to mention the agony of wearing a bra on ribs with no flesh protecting them.
And then you realise it's hurting there, and your brain starts misbehaving again.
"There's been so much damage there from the surgery and radiotherapy," said Sunshine comfortingly. "You'll have all sorts of muscular and nerve pain happening."
And proceeded to give me a somewhat agonising but much-needed work-over on all the dodgy bits. My ribs. The back of my upper arm. (Wow, did she find a sore spot in there; there was a cord so tight we could both feel it twanging every time she rubbed her firm torturer's fingers over it.) The middle of my upper back, and under my shoulder blade. Up the left side of my neck. Into the back of my shoulder joint.
All of it is directly traceable to the hell inflicted on my upper left side over the last year and a half. Fixing breast cancer's not as simple as just chopping off a boob, replacing it with a lump of silicone and Bob's your uncle, folks. My shoulder area's screwed for life. Every time I think I'm through it and start forgetting to do my exercises and stretches, it bites me. Sleeping comfortably all night is a thing of the past. I still can't rest on that side or I suffer all the next day in bloody agony.
Shut up, Candy. Whining doesn't help.
*********************
And hallelujah, at the end of my surgeon's check-up Dr Goodguy finally scheduled in some time to write me a referral to a plastic surgeon. He's been putting me off about reconstruction for a good sixteen months now, every time saying that we needed to let my chest recover from treatment to get the best result.
My god that time went slowly.
My relief must have been as palpable as my remaining breast.
"I'm so tired of my sarong falling down," I offered wryly, leaving out the bit about bursting into tears all over again every time it happens.
His face fell.
"I tried to leave you with two," he said. And I thought, my god, he actually remembers and cares. And felt terrible for even bringing it up.
"It wasn't to be," I said. Trying to make up ground. "Better to have it off and be sure."
Which is true; but clearly Dr Goodguy was just as proud of his skilful effort to reconstruct my boob after cutting the cancer out of it as I was impressed by his expertise.
Damn you, Freeloader. Did I mention you suck?
***********************
I am just so damn lucky to have him as my surgeon. He's referred me to a plastic surgeon I've never heard of in my life, rather than the one I'd set my heart on, but if Dr Goodguy says that this fellow's at the cutting edge of new procedures and that's where he wants me to go, than that's where I'm going.
If they could bottle trust and prescribe it for breast cancer patients, we'd all feel so much safer. I hear horror stories about women who have bad experiences with their doctors and end up lacking trust in their medical team. Some of them do themselves all sorts of mischief courtesy of Dr Google and 'natural remedies', or get taken for a ride financially by some charlatan who reckons they can cure cancer with the left eyeball of a frog extracted by moonlight and juiced with the blood of a rabid leech <ching!>. Or something. And then the poor women find they're even sicker than when they started, as well as broke and feeling stupid. It's tragic.
Not me- my first stop after diagnosis was Dr Goodguy, and I trust him implicitly. If I do end up having to have a double reconstruction, then I know I'll be going to a plastics man who's going to somehow make it all work for me rather than creating a bomb in my chest. Because that's the sort of doctor Dr Goodguy is. He actually does care about that stuff- women's self-image, and the importance of the patient being as happy as she possibly can be in the middle of this crock of shit. So I know he won't be sending me to some narcissistic shark who thinks that my next surgery is just a way to put his kids through private school.
And that, my friends, most definitely does NOT suck.
Wednesday, March 12, 2014
Friday, March 7, 2014
Ground Control to Major Tom
Those of you who've never experienced a cancer diagnosis may now be suffering under the misapprehension that we've reached 'mission accomplished' here. In October 2012 I was launched into a dangerous orbit whence I might not return. But here I am, in March 2014, back on Earth at the end of my (obvious) treatment and apparently safe and sound.
"You're looking amazing!", people say to me. "You look great!"
And I'm reminded of the startling last verse of that Bowie song-
Ground Control to Major Tom,
Your circuit's dead- is there something wrong?
Can you hear me, Major Tom? Can you hear me, Major Tom?
Can you hear me, Major Tom? Can you...
....Here am I floating in my tin can,
Far above the moon,
Planet Earth is blue and there's nothing I can do...
***********************
It separates you from the rest of the human race forever, that cancer diagnosis. You're forever orbiting the knowledge that maybe, somewhere in the machine that is your body, there's a faulty piece of circuit just waiting to melt down and destroy you.
It can happen at any time. Recently I met a woman who'd been diagnosed with secondaries an unbelievable 21 years after she was given the all-clear (or to use a more accurate medical term, 'no evidence of disease'). Another woman returned from her celebratory cruise to mark 10 years' NED, only to find that the monster was almost certainly back.
Planet Earth is blue and there's nothing I can do...
***********************
So you won't find me coming out with any smug assurances that I've beaten cancer or (as is the popular vernacular in BC circles) I've kicked its arse. Oh no. Fighting the Freeloader is a job for life. It's just that these days, it mostly manifests as a psychological battle to stop turning your head to look at the thing that's always on the periphery of your vision.
Get thee behind me, Planet Earth.
************************
Coincidentally, Ground Control to Major Tom is a long-standing code between my Bear and me which started with my considered choice of home number ringtone years ago. Of course, I usually take the role of Tom, flying off to town to shop or to attend yet another follow-up appointment; the Bear would rather insert bamboo slivers under his fingernails than go to town. When the Bowie song starts issuing from my bag, I pick up the call with Major Tom. He responds with Ground Control.
We laugh a lot.
Though less so lately.
But finally we have some progress on the home front, though I feel a little like I've been run over by the space shuttle as a result. I knew that tearing my Bear away from home to attend some post-cancer couples' counselling with our social worker (who did, eventually, call back) was always going to be a challenge. If I've been quiet, it's been from emotional exhaustion. It is damn hard work getting around a man's mental blocks. They're so good at building walls out of them. (Especially if anyone suggests they need help.)
Pass the wrecking ball.
Anyway, we were lucky. We found someone who 'gets' him, who doesn't try to make him sit in a chair in an office to talk about his deepest feelings. So far we've sat on a brick wall under a tree for one session, and sat on the ricketty little seating riser at the oval for another. Wind in our hair, sun on our arms. Birds singing.
And it's working. Slowly. Like pulling teeth without anaesthetic is working to get rid of an aching mouthful of disaster so you don't die of blood poisoning.
Except we pull them, and he goes home and puts the teeth back in again because that's what he's used to, and I spend some time pulling them out again. Ouch. Repeat ad lib for two weeks till the next appointment.
I'm tired. But it's working.
**********************
The need for this sort of agonising, exhausting emotional work as a side effect of your diagnosis and treatment is just another thing they don't warn you about. But the more I talk to the other women in my new support group, the more I see that it's a common thread. We've all been screwed over mentally.
The ones who've already done a fair bit of work on themselves are coping better than the ones who are still stuck in abusive relationships, or who have serious self-esteem issues left over from childhood, or who have given their all to others all their life and never really stopped to find themselves. Me? I've done a lot of work on myself. A lot. I've had extended therapy with three different practitioners through my life, and I've spent hours reflecting on myself and my choices. If I'm coping well with the curve ball called cancer, that's why.
But still it hasn't been enough to allow me to cope with this on my own. It took weeks (my therapist is ridiculously busy because she's bloody good), but finally I managed to get an appointment to get my own head straightened out too.
Naturally, the first thing she wanted to know was what I needed from her. And I said, "I need some support. I join all these support groups, and because I'm good at it I end up doing a lot of the supporting myself, and I realised the other day that- well, wait a minute, that wasn't why I joined."
(And it's not because people don't try to support me, I might say. But I'm acutely aware of the effect my own angst has on those around me. I self-censor. All. The. Time.)
"What does support look like to you?" she asked.
"Being able to just cry," I said, and did so.
That's where therapy is so good. I don't have to give a rat's arse about how my tears make the therapist feel. It's her job to receive them. And so I can just cry. Not explain. Not censor. Not rationalise and argue myself out of feeling what I'm feeling.
Just cry.
Everyone should have a therapist after something like this.
************************
Of course, I didn't just cry for the whole hour. A sentence that's come out of my mouth a few times lately is I don't know who I am any more. Cancer seems to have changed not only my body, but my life path. Getting back to where I was seems impossible.
What is my computer addiction all about? (Certainly it's not good for my relationship. See couples' counselling.)
Am I no longer a person who works with children? (What a damned waste that is. See the workplace that never calls.)
Have I become a person whose sole mission is to help other people with cancer? (See computer addiction. Is this the only way I'll ever feel useful again?)
And a few startling things emerged, as they are wont to do when I have therapy.
I am too big for my previous job. I need to expand my job description to use my talents in a satisfying way.
It's not that I'm not working because of cancer. I AM working- I'm helping people for hours every day with their cancer experience or with their questions about their children. It's just that I've tried to leave money out of the equation, and that's why I'm not feeling valued.
I am investing energy in staying small.
Yikes.
Needless to say, that therapy session will not be my last. I need to address this problem of feeling like I'm on the work scrapheap, despite having so much left to give and giving it wherever I can.
See, without serious, big work to occupy my brain, it's awfully hard for my eye not to be drawn back to that blue spinning planet called cancer. The one that's always there, that I can do nothing about. So that's the current mission: redefine what I do to make it fit who I am and meet my needs. It's going to be a challenge.
Ground Control to Major Tom. Prepare for liftoff.
"You're looking amazing!", people say to me. "You look great!"
 |
| Am I? Yeah, I guess so... |
And I'm reminded of the startling last verse of that Bowie song-
Ground Control to Major Tom,
Your circuit's dead- is there something wrong?
Can you hear me, Major Tom? Can you hear me, Major Tom?
Can you hear me, Major Tom? Can you...
....Here am I floating in my tin can,
Far above the moon,
Planet Earth is blue and there's nothing I can do...
***********************
It separates you from the rest of the human race forever, that cancer diagnosis. You're forever orbiting the knowledge that maybe, somewhere in the machine that is your body, there's a faulty piece of circuit just waiting to melt down and destroy you.
It can happen at any time. Recently I met a woman who'd been diagnosed with secondaries an unbelievable 21 years after she was given the all-clear (or to use a more accurate medical term, 'no evidence of disease'). Another woman returned from her celebratory cruise to mark 10 years' NED, only to find that the monster was almost certainly back.
Planet Earth is blue and there's nothing I can do...
***********************
So you won't find me coming out with any smug assurances that I've beaten cancer or (as is the popular vernacular in BC circles) I've kicked its arse. Oh no. Fighting the Freeloader is a job for life. It's just that these days, it mostly manifests as a psychological battle to stop turning your head to look at the thing that's always on the periphery of your vision.
Get thee behind me, Planet Earth.
************************
Coincidentally, Ground Control to Major Tom is a long-standing code between my Bear and me which started with my considered choice of home number ringtone years ago. Of course, I usually take the role of Tom, flying off to town to shop or to attend yet another follow-up appointment; the Bear would rather insert bamboo slivers under his fingernails than go to town. When the Bowie song starts issuing from my bag, I pick up the call with Major Tom. He responds with Ground Control.
We laugh a lot.
Though less so lately.
But finally we have some progress on the home front, though I feel a little like I've been run over by the space shuttle as a result. I knew that tearing my Bear away from home to attend some post-cancer couples' counselling with our social worker (who did, eventually, call back) was always going to be a challenge. If I've been quiet, it's been from emotional exhaustion. It is damn hard work getting around a man's mental blocks. They're so good at building walls out of them. (Especially if anyone suggests they need help.)
Pass the wrecking ball.
Anyway, we were lucky. We found someone who 'gets' him, who doesn't try to make him sit in a chair in an office to talk about his deepest feelings. So far we've sat on a brick wall under a tree for one session, and sat on the ricketty little seating riser at the oval for another. Wind in our hair, sun on our arms. Birds singing.
And it's working. Slowly. Like pulling teeth without anaesthetic is working to get rid of an aching mouthful of disaster so you don't die of blood poisoning.
Except we pull them, and he goes home and puts the teeth back in again because that's what he's used to, and I spend some time pulling them out again. Ouch. Repeat ad lib for two weeks till the next appointment.
I'm tired. But it's working.
**********************
The need for this sort of agonising, exhausting emotional work as a side effect of your diagnosis and treatment is just another thing they don't warn you about. But the more I talk to the other women in my new support group, the more I see that it's a common thread. We've all been screwed over mentally.
The ones who've already done a fair bit of work on themselves are coping better than the ones who are still stuck in abusive relationships, or who have serious self-esteem issues left over from childhood, or who have given their all to others all their life and never really stopped to find themselves. Me? I've done a lot of work on myself. A lot. I've had extended therapy with three different practitioners through my life, and I've spent hours reflecting on myself and my choices. If I'm coping well with the curve ball called cancer, that's why.
But still it hasn't been enough to allow me to cope with this on my own. It took weeks (my therapist is ridiculously busy because she's bloody good), but finally I managed to get an appointment to get my own head straightened out too.
Naturally, the first thing she wanted to know was what I needed from her. And I said, "I need some support. I join all these support groups, and because I'm good at it I end up doing a lot of the supporting myself, and I realised the other day that- well, wait a minute, that wasn't why I joined."
(And it's not because people don't try to support me, I might say. But I'm acutely aware of the effect my own angst has on those around me. I self-censor. All. The. Time.)
"What does support look like to you?" she asked.
"Being able to just cry," I said, and did so.
That's where therapy is so good. I don't have to give a rat's arse about how my tears make the therapist feel. It's her job to receive them. And so I can just cry. Not explain. Not censor. Not rationalise and argue myself out of feeling what I'm feeling.
Just cry.
Everyone should have a therapist after something like this.
************************
Of course, I didn't just cry for the whole hour. A sentence that's come out of my mouth a few times lately is I don't know who I am any more. Cancer seems to have changed not only my body, but my life path. Getting back to where I was seems impossible.
What is my computer addiction all about? (Certainly it's not good for my relationship. See couples' counselling.)
Am I no longer a person who works with children? (What a damned waste that is. See the workplace that never calls.)
Have I become a person whose sole mission is to help other people with cancer? (See computer addiction. Is this the only way I'll ever feel useful again?)
And a few startling things emerged, as they are wont to do when I have therapy.
I am too big for my previous job. I need to expand my job description to use my talents in a satisfying way.
It's not that I'm not working because of cancer. I AM working- I'm helping people for hours every day with their cancer experience or with their questions about their children. It's just that I've tried to leave money out of the equation, and that's why I'm not feeling valued.
I am investing energy in staying small.
Yikes.
Needless to say, that therapy session will not be my last. I need to address this problem of feeling like I'm on the work scrapheap, despite having so much left to give and giving it wherever I can.
See, without serious, big work to occupy my brain, it's awfully hard for my eye not to be drawn back to that blue spinning planet called cancer. The one that's always there, that I can do nothing about. So that's the current mission: redefine what I do to make it fit who I am and meet my needs. It's going to be a challenge.
Ground Control to Major Tom. Prepare for liftoff.
Wednesday, February 5, 2014
The slow internal burnout
I haven't written anything for a while.
I did start writing a post during January, but it became an extended rant about little things- little things that certainly weren't going to change thanks to my ranting. Frustration doesn't make for good blogging. You need a little more substance than twenty paragraphs devoted to saying 'some people are idiots', even if you do manage to do so in twenty different ways.
But now I do need to write something, because- surprise- I've hit the wall, and you, my friends, need to understand why.
********************
I blame my father. Or rather, I blame his genes. In a tongue-in-cheek sort of a way.
See, some of my father's most prominent personal characteristics were courage, determination, persistence and anger. And lucky me- I inherited the full hand of cards.
The courage, determination and persistence stood me in as good stead through this battle with the Freeloader as they did my father in World War II. He emerged something of a hero at the end of it, and- in some people's eyes- it seems so have I. People like my father and me do well under fire. We steel ourselves, we fight back with everything we've got, and we do our best to save those around us as well as ourselves.
But he was ever after an angry, wounded man, prone to irrational behaviour and sudden explosions of temper. As the dust settles around me, with everyone telling me how fantastic I look and assuming everything's just hunky dory now, I find myself following down the same path. PTSD, anyone?
After all these months of holding things together, I can see the seams starting to rip. Distracting myself by helping other people isn't a long-term solution to the sort of stress that the Freeloader has put me under. In the end, it just makes me angry that hardly anyone seems to notice that maybe I might need a hand too. Not even when I tell them so.
Is my act that good?
************************
Let's share it around; I blame my grandmother, too. Or rather, I blame the Polynesian blood. I'm guessing that her cultural heritage gave me my ability to understand what's happening between the lines of what people write and say. It's an instinct that I can't explain, but I can often nail what other people are feeling and put it into words for them, even if I don't know them very well.
That has its traps. Mostly people are grateful for my gift of understanding, but sometimes people reveal more than they meant to. Sometimes people don't want to be exposed like that.
And here's the rub: at some stage, a person who instinctively understands other people's feelings also wants to be understood like that in return. Sometimes I feel desperate for somebody, anybody, to at least try to read between the lines of what I write and say. Because we all self-censor when we go public.
I need someone who can see to the heart of things, like I so often can.
************************
I would never blame my mother, of course. Not even with my tongue firmly wedged in my cheek. She gave me the gift of writing what I mean. She gave me the sense of humour to see the funny side of almost everything that's happened to me over the last 16 months.
Sometimes that laughter, and that ability to record my feelings accurately, have been the only things keeping my head above water.
But being the class clown on one hand and writing harsh truths that others identify with on the other- no, that's not the whole solution either. I'm still performing. At some stage the curtain has to go down, and I'm left with myself and a bin full of reject truths that weren't fit for public consumption.
Nobody gets thanked for bringing the whole room down, right?
**********************
So here I am, stumbling through the trenches of cancer, wearing my blog like a flak jacket to repel the bullets of fear, holding out my hand and my wise words and my poems and my songs to others to drag them out of the mud if I can. Overhead, skyrockets are going off because my war is, apparently, over. Isn't it?
A lot of the time, this is what it looks like ahead to me:
More trenches.
Has anyone got my back?
**********************
Enough analogies. Here is the real scenery.
Put simply, I actually feel right now like I don't have any real-life support.
Yes, I've got a good partner, and for that I'm grateful. BUT. My man needs as much help as I do. He's been a trouper all through the full frontal engagements with the enemy, but now we both need debriefing. We're not a lot of use to each other in that respect, because we're both afraid the other will break if we open up too much. I've got to the point in this campaign where I'm maybe up for genetic testing; it might mean quite a lot more surgery. He doesn't even want to talk about it. The family history I've gathered isn't looking good. Another trench to fall into and climb out of.
I know I need help, and so does my man. I've rung the social worker repeatedly, trying to get an appointment to see her with the Bear so we can work through our issues. Every time, I've got her answering machine; every time, I've left a message; zero times has my call been returned.
And yes, she was expecting my call.
That doesn't feel much like support.
Meanwhile, one girlfriend whose visit I was looking forward to isn't coming, or not for several more months. After her spending most of the time I've been sick overseas, I admit I was counting on her coming and fielding a few more four-letter-words than I usually release into the wild in real life. But she can't help it; I'm not blaming her. Another girlfriend, my usual reliable backstop, has recently admitted that due to a few challenges that are out of my control she won't be visiting any time in the near future either.
And the neighbours and the acquaintances- well, they just want reassurance that I'm well and staying that way. They're mostly not the sorts of people I'd be spilling my guts to anyway.
As for the new local Breast Cancer Support Group, the one they want me to lead in the future- well, same old same old, right? Who gets the support? Who gets to do the supporting? The dynamics so far suggest that I'll be doing a lot more giving than receiving.
Online support? I guess I'm my own worst enemy in some ways, always more ready to help than to admit I need help. And like I said- it's hard to find anyone who can read between the lines like I do.
Hell, I don't even know what I need help with most of the time. I think I probably just need to cry and yell for about two weeks, and it's hard to do that online. I'd just make people distressed. It's the best I can do to put out the occasional rant in the Pink Sisters. And some things- well, some things you just don't want to put in writing anyway. You just need to thump someone's shoulder while you scream.
So much for the backup troops, the covering fire. That's just the way it is; nothing I can do about it but shrug my shoulders and keep putting one foot in front of the other. And glancing over my shoulder, keeping an eye out for snipers.
**********************
Against that background of 'you're on your own, sweetheart', I'm finding a whole new and exciting range of triggers to set off my temper. Mostly, I feel enraged completely out of proportion to the supposed offence, and I know it. I can't blame the Arimidex for all of it, though certainly it makes me irrationally touchy from time to time. But some of my anger goes deeper than being starved of a hormone. There's a deep injustice about this disease that has no answer. My nature craves balance and fairness, but life isn't like that, is it? Life doesn't give a crap about fairness.
The latest nudge to set me off was the media hype about a dead movie star found with a needle in his arm and a shitload of heroin in his body. The tenth Facebook friend waxing lyrical about what a tragedy it was inspired me to express my anger on my page about fools who choose to dice with death, aka using addictive recreational drugs for a thrill, and then get a big glorious pat on the back when they cark it. Meanwhile I fight for my life, for the rest of my life, with no option to sit out the game.
Nothing fair about that.
Yes, I admitted, maybe I'm being unreasonably hard on people for making one mistake. But considering where I've been this last year, cut me a break, I asked my friends.
Or words to that effect. I haven't been back to Facebook to check exactly what I said, because right at the moment I don't want to be there, because some of the responses I got made me too angry and hurt.
But I guess it sorts people out, doesn't it?
Some 'friends' didn't seem to bother reading that last bit about cutting me a break, or didn't think it mattered. In they came with barrels blazing, arguing with me and each other. The one time I actually admit to a bit of anger about what's happened to me, and people rush to call me names. WTF is that about? Judgmental, unsympathetic, lacking in compassion; you name it, it got either said or implied.
Yeah, that's me. To a T. Who are you and how the fuck did you get on my friends' list. And why didn't you ever learn to read.
I wasn't that rude in response, of course. Mostly I just thought it. Felt it.
Oh, quite a number of people agreed with me about drug use. But agreeing wasn't really the point. I don't think they heard what I said- what my heart said- any better than those who disagreed. Not the important thing, the thing that was actually there in black and white at the end, but which somehow got lost amongst the knee-jerks. Because if they'd heard that, they might have said to some of the other people, 'didn't you hear what she said? Shut up. Why are you turning this into something about you?'
Two friends did read and comprehend, in that whole string of 80 comments. Two people didn't immediately try to
argue about how wrong I was about addiction or risk or whatever their personal hobby horse was or
modify my opinion as too extreme or
embroider the argument to encompass their own personal context so they could refute it or
agree with me that recreational drug use was a bad choice.
Two people actually read to the end of what I wrote and understood it as me saying THIS IS JUST A BRIDGE TOO FAR, I'VE HAD ENOUGH, LET ME BE FUCKING ANGRY FOR A MOMENT AT THE INJUSTICE OF THIS WHOLE BLOODY YEAR OF HELL.
One person said
break given.
One person said
I hear you.
Thank you to those two people who were actually listening.
*********************
And so, where to from here? Not back to Facebook, I think, other than to post this. Fuck the daily song, fuck the record of daily workouts, fuck the poems that I've been posting every day to try to put something other than celebrity bullshit and personal whining into my friends' feeds. I need a break from supporting other people and brightening their days. I'm exhausted from pouring my energy into a bottomless pit of other people's needs. Someone needs to put a trampoline at the bottom before I throw my whole self in, hokey pokey style.
To those who really want to support me, who participated in that thread and have just realised they missed something: it's okay. I forgive you for missing it. My act probably is that good. I probably have had you fooled. Now, wake up and listen: I'm on the fucking edge.
Perhaps I'll head to the telephone when I'm done here, to give the social worker one last call. Perhaps then to another counsellor from my past, if I can't get any response. The rational brain is still ticking, despite the slow internal burnout.
I've already been out on the bike, eating up 11km as though I was standing still because I'm so much fitter than I used to be.
It didn't stop me feeling angry, though.
A walk in the bush. Some time at my sewing machine. A bit of bird-watching from my balcony.
There are plenty of things to feel happy about, if only I could get past the anger. But right now, I'm not going to play my usual game and tell you about them so you can relax and think I'm okay and not worry about me. There are plenty of good things in my life, but maybe my real-life support system isn't one of them.
Time to toughen up and keep marching, till I find a debriefing station.
I did start writing a post during January, but it became an extended rant about little things- little things that certainly weren't going to change thanks to my ranting. Frustration doesn't make for good blogging. You need a little more substance than twenty paragraphs devoted to saying 'some people are idiots', even if you do manage to do so in twenty different ways.
But now I do need to write something, because- surprise- I've hit the wall, and you, my friends, need to understand why.
********************
See, some of my father's most prominent personal characteristics were courage, determination, persistence and anger. And lucky me- I inherited the full hand of cards.
The courage, determination and persistence stood me in as good stead through this battle with the Freeloader as they did my father in World War II. He emerged something of a hero at the end of it, and- in some people's eyes- it seems so have I. People like my father and me do well under fire. We steel ourselves, we fight back with everything we've got, and we do our best to save those around us as well as ourselves.
But he was ever after an angry, wounded man, prone to irrational behaviour and sudden explosions of temper. As the dust settles around me, with everyone telling me how fantastic I look and assuming everything's just hunky dory now, I find myself following down the same path. PTSD, anyone?
After all these months of holding things together, I can see the seams starting to rip. Distracting myself by helping other people isn't a long-term solution to the sort of stress that the Freeloader has put me under. In the end, it just makes me angry that hardly anyone seems to notice that maybe I might need a hand too. Not even when I tell them so.
Is my act that good?
************************
That has its traps. Mostly people are grateful for my gift of understanding, but sometimes people reveal more than they meant to. Sometimes people don't want to be exposed like that.
And here's the rub: at some stage, a person who instinctively understands other people's feelings also wants to be understood like that in return. Sometimes I feel desperate for somebody, anybody, to at least try to read between the lines of what I write and say. Because we all self-censor when we go public.
I need someone who can see to the heart of things, like I so often can.
************************
Sometimes that laughter, and that ability to record my feelings accurately, have been the only things keeping my head above water.
But being the class clown on one hand and writing harsh truths that others identify with on the other- no, that's not the whole solution either. I'm still performing. At some stage the curtain has to go down, and I'm left with myself and a bin full of reject truths that weren't fit for public consumption.
Nobody gets thanked for bringing the whole room down, right?
**********************
So here I am, stumbling through the trenches of cancer, wearing my blog like a flak jacket to repel the bullets of fear, holding out my hand and my wise words and my poems and my songs to others to drag them out of the mud if I can. Overhead, skyrockets are going off because my war is, apparently, over. Isn't it?
A lot of the time, this is what it looks like ahead to me:
More trenches.
Has anyone got my back?
**********************
Enough analogies. Here is the real scenery.
Put simply, I actually feel right now like I don't have any real-life support.
Yes, I've got a good partner, and for that I'm grateful. BUT. My man needs as much help as I do. He's been a trouper all through the full frontal engagements with the enemy, but now we both need debriefing. We're not a lot of use to each other in that respect, because we're both afraid the other will break if we open up too much. I've got to the point in this campaign where I'm maybe up for genetic testing; it might mean quite a lot more surgery. He doesn't even want to talk about it. The family history I've gathered isn't looking good. Another trench to fall into and climb out of.
I know I need help, and so does my man. I've rung the social worker repeatedly, trying to get an appointment to see her with the Bear so we can work through our issues. Every time, I've got her answering machine; every time, I've left a message; zero times has my call been returned.
And yes, she was expecting my call.
That doesn't feel much like support.
Meanwhile, one girlfriend whose visit I was looking forward to isn't coming, or not for several more months. After her spending most of the time I've been sick overseas, I admit I was counting on her coming and fielding a few more four-letter-words than I usually release into the wild in real life. But she can't help it; I'm not blaming her. Another girlfriend, my usual reliable backstop, has recently admitted that due to a few challenges that are out of my control she won't be visiting any time in the near future either.
And the neighbours and the acquaintances- well, they just want reassurance that I'm well and staying that way. They're mostly not the sorts of people I'd be spilling my guts to anyway.
As for the new local Breast Cancer Support Group, the one they want me to lead in the future- well, same old same old, right? Who gets the support? Who gets to do the supporting? The dynamics so far suggest that I'll be doing a lot more giving than receiving.
Online support? I guess I'm my own worst enemy in some ways, always more ready to help than to admit I need help. And like I said- it's hard to find anyone who can read between the lines like I do.
Hell, I don't even know what I need help with most of the time. I think I probably just need to cry and yell for about two weeks, and it's hard to do that online. I'd just make people distressed. It's the best I can do to put out the occasional rant in the Pink Sisters. And some things- well, some things you just don't want to put in writing anyway. You just need to thump someone's shoulder while you scream.
So much for the backup troops, the covering fire. That's just the way it is; nothing I can do about it but shrug my shoulders and keep putting one foot in front of the other. And glancing over my shoulder, keeping an eye out for snipers.
**********************
Against that background of 'you're on your own, sweetheart', I'm finding a whole new and exciting range of triggers to set off my temper. Mostly, I feel enraged completely out of proportion to the supposed offence, and I know it. I can't blame the Arimidex for all of it, though certainly it makes me irrationally touchy from time to time. But some of my anger goes deeper than being starved of a hormone. There's a deep injustice about this disease that has no answer. My nature craves balance and fairness, but life isn't like that, is it? Life doesn't give a crap about fairness.
The latest nudge to set me off was the media hype about a dead movie star found with a needle in his arm and a shitload of heroin in his body. The tenth Facebook friend waxing lyrical about what a tragedy it was inspired me to express my anger on my page about fools who choose to dice with death, aka using addictive recreational drugs for a thrill, and then get a big glorious pat on the back when they cark it. Meanwhile I fight for my life, for the rest of my life, with no option to sit out the game.
Nothing fair about that.
Yes, I admitted, maybe I'm being unreasonably hard on people for making one mistake. But considering where I've been this last year, cut me a break, I asked my friends.
Or words to that effect. I haven't been back to Facebook to check exactly what I said, because right at the moment I don't want to be there, because some of the responses I got made me too angry and hurt.
But I guess it sorts people out, doesn't it?
Some 'friends' didn't seem to bother reading that last bit about cutting me a break, or didn't think it mattered. In they came with barrels blazing, arguing with me and each other. The one time I actually admit to a bit of anger about what's happened to me, and people rush to call me names. WTF is that about? Judgmental, unsympathetic, lacking in compassion; you name it, it got either said or implied.
Yeah, that's me. To a T. Who are you and how the fuck did you get on my friends' list. And why didn't you ever learn to read.
I wasn't that rude in response, of course. Mostly I just thought it. Felt it.
Oh, quite a number of people agreed with me about drug use. But agreeing wasn't really the point. I don't think they heard what I said- what my heart said- any better than those who disagreed. Not the important thing, the thing that was actually there in black and white at the end, but which somehow got lost amongst the knee-jerks. Because if they'd heard that, they might have said to some of the other people, 'didn't you hear what she said? Shut up. Why are you turning this into something about you?'
Two friends did read and comprehend, in that whole string of 80 comments. Two people didn't immediately try to
argue about how wrong I was about addiction or risk or whatever their personal hobby horse was or
modify my opinion as too extreme or
embroider the argument to encompass their own personal context so they could refute it or
agree with me that recreational drug use was a bad choice.
Two people actually read to the end of what I wrote and understood it as me saying THIS IS JUST A BRIDGE TOO FAR, I'VE HAD ENOUGH, LET ME BE FUCKING ANGRY FOR A MOMENT AT THE INJUSTICE OF THIS WHOLE BLOODY YEAR OF HELL.
One person said
break given.
One person said
I hear you.
Thank you to those two people who were actually listening.
*********************
And so, where to from here? Not back to Facebook, I think, other than to post this. Fuck the daily song, fuck the record of daily workouts, fuck the poems that I've been posting every day to try to put something other than celebrity bullshit and personal whining into my friends' feeds. I need a break from supporting other people and brightening their days. I'm exhausted from pouring my energy into a bottomless pit of other people's needs. Someone needs to put a trampoline at the bottom before I throw my whole self in, hokey pokey style.
To those who really want to support me, who participated in that thread and have just realised they missed something: it's okay. I forgive you for missing it. My act probably is that good. I probably have had you fooled. Now, wake up and listen: I'm on the fucking edge.
Perhaps I'll head to the telephone when I'm done here, to give the social worker one last call. Perhaps then to another counsellor from my past, if I can't get any response. The rational brain is still ticking, despite the slow internal burnout.
I've already been out on the bike, eating up 11km as though I was standing still because I'm so much fitter than I used to be.
It didn't stop me feeling angry, though.
A walk in the bush. Some time at my sewing machine. A bit of bird-watching from my balcony.
There are plenty of things to feel happy about, if only I could get past the anger. But right now, I'm not going to play my usual game and tell you about them so you can relax and think I'm okay and not worry about me. There are plenty of good things in my life, but maybe my real-life support system isn't one of them.
Time to toughen up and keep marching, till I find a debriefing station.
Tuesday, December 24, 2013
Soul food
The pity party is officially over.
See, you can either stay where you are and feel sorry for yourself, or you can pick up your foot- either foot- and make the first step to somewhere else.
For an indecisive Libran like me, the biggest problem was deciding which foot to move first. Story of my life. My eggs have always been in too many baskets. My hat rack has always been full to overflowing. (And my oversupply of metaphors always in danger of falling into the mixmaster.)
Some say I'm over-imbued with talents, and others might view it as being a Jack-of-all-trades (with the usual rider). And so often, I've found myself in a state of paralysis, not knowing which path to follow to find some sort of fulfilment.
I could be writing. There are two blogs, two unfinished books and a growing series of children's stories to work on.
I could be applying for jobs, trying to get back into the childcare workforce and using my talents to help children.
And on, and on. I can make things, too. I can knit and sew and paint a little. I can sing and play and write music. All these ways of finding new wonder and joy in the world are at my disposal- and yet when the crazy of treatment abated at last, I fell into a black hole. I'd got myself healthy, I'd got myself into a fitness routine and was eating well, I was getting back to the normal level of daily tasks and I'd set myself some goals around the farm- and yet hopelessness was seeping in and settling around me. Every day was feeling the same.
Sure, I was spending half the day on Facebook doing good, trying to help other women with cancer come to terms with what I've been through, but that didn't seem to be enough to feed my need for meaning in my life. It was giving me some sense of purpose, sure- I wasn't just being a passenger in the ride to the end of time- but it still wasn't healing the scars on my soul.
What was I doing just for me?
Not a lot.
*******************
It's not enough, you see, to just be there for everyone else. After a while of doing that, you start to feel hollow inside. The Bear calls it running on empty. He's been doing it himself for a while now. He really needs to go sailing; I wish somebody would find him a boat. That's his soul food, see. He's sitting here wishing Christmas Day was over right now, so impatient is he for the start of the Sydney-Hobart. He's read the programme till it's falling apart. Vicarious pleasure, given that his days of actually competing are long gone.
I can't fix it for him; he needs to do start the ball rolling for himself. I'm no sailor. I don't know the right people.
But many of his friends do. I wish to god they'd think to ask him how he is once in a while, instead of asking him how I am. I wish they'd see that cancer is a disease of the whole family unit, not just one person. I wish they'd open some doors and make it possible for him to heal himself.
That'll be the day.
*******************
I had an excuse for every single thing I didn't do to help myself, of course. I didn't have the concentration to write, or I was too tired, or I wasn't in the mood. I was too old to get work; who'd want me? And my hands don't work the same as they used to. They're a little arthritic. They hurt when I try to knit; heaven knows how I'd go on the guitar, as there's no strength in my left hand. My eyes are screwed so I can only sew in daylight. Painting? Meh, so much organisation.
And so on.
The magic moment when it came was random, as magic so often is. A chance post on my Facebook wall by a friend I've never met, another rider on the Cancer Train. A song I'd forgotten I knew.
I didn't even play the video. I didn't need to. I realised the song was all there still, inside my head. I used to play it years ago when I was in college, when I was making a little money to supplement my teachers' scholarship by providing music for the patrons to ignore while they ate dinner in a local restaurant.
I didn't mind that they ignored me. Someone was giving me money to play songs I liked on the piano. That seemed like a miracle too, back then; most of my experiences of paid work had been pretty dire.
But I digress.
That song went round and round in my head all morning. Eventually it got too much for me. I dared raise the lid of my poor piano, sadly neglected for the whole year of my treatment. I knew it hadn't been tuned, despite the appallingly changeable weather and three floods. I opened it up anyway.
I dared put my fingers on the keys, despite knowing the tips were still a little numb from the peripheral neuropathy. Some of the Freeloader's gifts are permanent, it seems.
And I didn't have to try very hard to remember.
It didn't sound too bad.
Just for the hell of it, I videoed it. Something told me it was an important breakthrough. And then I uploaded it to Pink Sisters, so my friend could see what she'd done. So many of our actions have ripples we never know about; I wanted her to see that something good had come of her tiny, random decision to put that song on her wall. It might make her feel better, if her today was being as rough as usual.
It was the start of something.
*******************
The thing about my music: I need an audience. If a song plays in the forest and nobody hears it, did anyone care? I'd long lost touch with the personal pleasure of just making music for me. I'm too hard a task master. I couldn't play or sing well enough to satisfy myself. All those years of judging other people's performances had taken their toll; I wasn't good enough to please me. I've rarely played or sung since I stopped teaching music for a living.
But oddly, other people seem to be kinder to me than I am to myself. They enjoyed my little video. They wanted some more. A little music to cut through the heaviness of dealing with their disease and their treatments and their PTSD, every single day.
They didn't have to ask twice. The next day I posted another little piano tune that I'd taken from the back drawer of my memory.
And then someone asked me if I ever sang while I played. What? Ever? When I was a teenager I sang dozens of songs every day while I played. When I was working in schools I sang and played every single day. WTF happened to that?
I needed a few rehearsals this time.
I just needed a bit of encouragement, I guess.
I've made a Facebook page now, where I put up a performance a day. It's not about the quality. I'm never going to have an agent knocking on my door or ten thousand 'likers' of the page. I've managed to shut down my internal critic, the one that would make me do forty five takes and still not have one good enough to post. I'm not listening to the voice that says all your old students will look at this and know you're really crap. That voice has missed the point.
**********************
The point is that cancer scars your soul. You're wounded inside, where nobody else can see.
If you just sit there, waiting to feel better, hopelessness comes over you like a cloud and settles all around you. The Scary Man whispers his fearful poison in your ear, day and night. You've been through so much with so much resilience, you've beaten off this bastard for months of your life, and now- when everyone else thinks it's over- you realise it's never over. When everyone thinks you've won, you give up and become a victim, because you're just so tired and gutted.
No you fucking don't.
You find something that heals your soul, and you do it. You get out of the bloody chair and please yourself, because really, all this pleasing everyone else has whiskers on it if you end up empty inside. Why the hell bother? You can't give when you've got nothing left.
You find your inner tiger, and you feed it. Because the tiger is what will keep your life worth living, that life that you've fought so hard to save. Nobody else can feed your soul. The tiger is yours alone. It responds only to what you do, grows fat and healthy again only on what you need.
*********************
Here it is Christmas Day, and I'm sitting in a chair writing. I'm not being with the people who might expect me to be with them today, and I'm not cooking up a storm; in fact we've eaten pleasantly, but quite frugally. I'm not pleasing anyone but myself. The tiger says no. Right now I need silence, and a feast of soul food.
I haven't sung yet today, but it'll happen. Having a page set up like that is a commitment to feeding the tiger. Even when I felt flat and uninspired a few days ago, I knew I had to honour the tiger and try to sing.
I felt so much better afterwards.
I called the piano tuner, too. The tiger keeps wincing when my left hand hits the octave that's soooo out of tune. See what I'm doing there? I'm shooting down my own excuses.
And another thing: I really can't play the guitar still. I tried. So when I wanted to sing a Joni Mitchell song and my hand wouldn't cooperate, I opened up the music composition program that Jools got for me years ago instead. I'd barely touched it since she gave it to me; it had opened up a can of worms I couldn't bear to look at, full of old hurts and lost beauty. I taught myself how to use it pretty fast- seen one sequencing program, seen 'em all- and wrote out the guitar part in a couple of hours.
By later that day, I'd started writing some words down for a new song.
The tiger is still purring about that. I didn't write music any more because there was nobody to perform it. I'd forgotten about me.
***********************
So- no more forgetting about me. Healing means fixing the intangible as well as the physical. Nobody else can do it for me. I have to make my own tiger-food. All the materials are here. There are no excuses, really.
And now, if you'll excuse me, my piano is calling me.
See, you can either stay where you are and feel sorry for yourself, or you can pick up your foot- either foot- and make the first step to somewhere else.
For an indecisive Libran like me, the biggest problem was deciding which foot to move first. Story of my life. My eggs have always been in too many baskets. My hat rack has always been full to overflowing. (And my oversupply of metaphors always in danger of falling into the mixmaster.)
Some say I'm over-imbued with talents, and others might view it as being a Jack-of-all-trades (with the usual rider). And so often, I've found myself in a state of paralysis, not knowing which path to follow to find some sort of fulfilment.
I could be writing. There are two blogs, two unfinished books and a growing series of children's stories to work on.
I could be applying for jobs, trying to get back into the childcare workforce and using my talents to help children.
And on, and on. I can make things, too. I can knit and sew and paint a little. I can sing and play and write music. All these ways of finding new wonder and joy in the world are at my disposal- and yet when the crazy of treatment abated at last, I fell into a black hole. I'd got myself healthy, I'd got myself into a fitness routine and was eating well, I was getting back to the normal level of daily tasks and I'd set myself some goals around the farm- and yet hopelessness was seeping in and settling around me. Every day was feeling the same.
 |
| Of course, there's something to be achieved from routine. But it isn't all there is. |
Sure, I was spending half the day on Facebook doing good, trying to help other women with cancer come to terms with what I've been through, but that didn't seem to be enough to feed my need for meaning in my life. It was giving me some sense of purpose, sure- I wasn't just being a passenger in the ride to the end of time- but it still wasn't healing the scars on my soul.
What was I doing just for me?
Not a lot.
*******************
It's not enough, you see, to just be there for everyone else. After a while of doing that, you start to feel hollow inside. The Bear calls it running on empty. He's been doing it himself for a while now. He really needs to go sailing; I wish somebody would find him a boat. That's his soul food, see. He's sitting here wishing Christmas Day was over right now, so impatient is he for the start of the Sydney-Hobart. He's read the programme till it's falling apart. Vicarious pleasure, given that his days of actually competing are long gone.
I can't fix it for him; he needs to do start the ball rolling for himself. I'm no sailor. I don't know the right people.
But many of his friends do. I wish to god they'd think to ask him how he is once in a while, instead of asking him how I am. I wish they'd see that cancer is a disease of the whole family unit, not just one person. I wish they'd open some doors and make it possible for him to heal himself.
That'll be the day.
*******************
I had an excuse for every single thing I didn't do to help myself, of course. I didn't have the concentration to write, or I was too tired, or I wasn't in the mood. I was too old to get work; who'd want me? And my hands don't work the same as they used to. They're a little arthritic. They hurt when I try to knit; heaven knows how I'd go on the guitar, as there's no strength in my left hand. My eyes are screwed so I can only sew in daylight. Painting? Meh, so much organisation.
And so on.
The magic moment when it came was random, as magic so often is. A chance post on my Facebook wall by a friend I've never met, another rider on the Cancer Train. A song I'd forgotten I knew.
I didn't even play the video. I didn't need to. I realised the song was all there still, inside my head. I used to play it years ago when I was in college, when I was making a little money to supplement my teachers' scholarship by providing music for the patrons to ignore while they ate dinner in a local restaurant.
I didn't mind that they ignored me. Someone was giving me money to play songs I liked on the piano. That seemed like a miracle too, back then; most of my experiences of paid work had been pretty dire.
But I digress.
That song went round and round in my head all morning. Eventually it got too much for me. I dared raise the lid of my poor piano, sadly neglected for the whole year of my treatment. I knew it hadn't been tuned, despite the appallingly changeable weather and three floods. I opened it up anyway.
I dared put my fingers on the keys, despite knowing the tips were still a little numb from the peripheral neuropathy. Some of the Freeloader's gifts are permanent, it seems.
And I didn't have to try very hard to remember.
It didn't sound too bad.
Just for the hell of it, I videoed it. Something told me it was an important breakthrough. And then I uploaded it to Pink Sisters, so my friend could see what she'd done. So many of our actions have ripples we never know about; I wanted her to see that something good had come of her tiny, random decision to put that song on her wall. It might make her feel better, if her today was being as rough as usual.
It was the start of something.
*******************
The thing about my music: I need an audience. If a song plays in the forest and nobody hears it, did anyone care? I'd long lost touch with the personal pleasure of just making music for me. I'm too hard a task master. I couldn't play or sing well enough to satisfy myself. All those years of judging other people's performances had taken their toll; I wasn't good enough to please me. I've rarely played or sung since I stopped teaching music for a living.
But oddly, other people seem to be kinder to me than I am to myself. They enjoyed my little video. They wanted some more. A little music to cut through the heaviness of dealing with their disease and their treatments and their PTSD, every single day.
They didn't have to ask twice. The next day I posted another little piano tune that I'd taken from the back drawer of my memory.
And then someone asked me if I ever sang while I played. What? Ever? When I was a teenager I sang dozens of songs every day while I played. When I was working in schools I sang and played every single day. WTF happened to that?
I needed a few rehearsals this time.
I just needed a bit of encouragement, I guess.
I've made a Facebook page now, where I put up a performance a day. It's not about the quality. I'm never going to have an agent knocking on my door or ten thousand 'likers' of the page. I've managed to shut down my internal critic, the one that would make me do forty five takes and still not have one good enough to post. I'm not listening to the voice that says all your old students will look at this and know you're really crap. That voice has missed the point.
**********************
The point is that cancer scars your soul. You're wounded inside, where nobody else can see.
If you just sit there, waiting to feel better, hopelessness comes over you like a cloud and settles all around you. The Scary Man whispers his fearful poison in your ear, day and night. You've been through so much with so much resilience, you've beaten off this bastard for months of your life, and now- when everyone else thinks it's over- you realise it's never over. When everyone thinks you've won, you give up and become a victim, because you're just so tired and gutted.
No you fucking don't.
You find something that heals your soul, and you do it. You get out of the bloody chair and please yourself, because really, all this pleasing everyone else has whiskers on it if you end up empty inside. Why the hell bother? You can't give when you've got nothing left.
You find your inner tiger, and you feed it. Because the tiger is what will keep your life worth living, that life that you've fought so hard to save. Nobody else can feed your soul. The tiger is yours alone. It responds only to what you do, grows fat and healthy again only on what you need.
*********************
Here it is Christmas Day, and I'm sitting in a chair writing. I'm not being with the people who might expect me to be with them today, and I'm not cooking up a storm; in fact we've eaten pleasantly, but quite frugally. I'm not pleasing anyone but myself. The tiger says no. Right now I need silence, and a feast of soul food.
I haven't sung yet today, but it'll happen. Having a page set up like that is a commitment to feeding the tiger. Even when I felt flat and uninspired a few days ago, I knew I had to honour the tiger and try to sing.
I felt so much better afterwards.
I called the piano tuner, too. The tiger keeps wincing when my left hand hits the octave that's soooo out of tune. See what I'm doing there? I'm shooting down my own excuses.
And another thing: I really can't play the guitar still. I tried. So when I wanted to sing a Joni Mitchell song and my hand wouldn't cooperate, I opened up the music composition program that Jools got for me years ago instead. I'd barely touched it since she gave it to me; it had opened up a can of worms I couldn't bear to look at, full of old hurts and lost beauty. I taught myself how to use it pretty fast- seen one sequencing program, seen 'em all- and wrote out the guitar part in a couple of hours.
By later that day, I'd started writing some words down for a new song.
The tiger is still purring about that. I didn't write music any more because there was nobody to perform it. I'd forgotten about me.
***********************
So- no more forgetting about me. Healing means fixing the intangible as well as the physical. Nobody else can do it for me. I have to make my own tiger-food. All the materials are here. There are no excuses, really.
And now, if you'll excuse me, my piano is calling me.
Thursday, November 21, 2013
The Getting of Wisdom, the Crushing of Candy
I was having a bit of a pity party this morning over breakfast.
"My life is so boring," I wailed to the Bear. "People ask me how I am, and the next question is always what am I up to. And what is there to say? All I do is get up, exercise, clear the lagoon, make dinner and collapse into bed."
I left out the bits about sitting in this chair writing, talking to my friends on Facebook and making Bitstrip cartoons or playing Candy Crush. No need to spoil a good whine with facts.
"What do you want to do?" he asked, looking far more distraught than I'd intended. Everything knocks him sideways at the moment, and any sign that I'm the faintest bit upset is like a baseball bat to his temple.
Which stunned me into silence, and not just because I'd realised I was being a royal pain in the arse. What did I want to do? I had absolutely no idea. It's so long since I've had any real choices that I've even forgotten what the choices are; I've sorted out a routine that seems to be manageable, and I'm just putting one foot in front of the other to get through each day. Cancer plays such havoc with your life that picking up the pieces as you emerge from the other end is both exhausting and highly confusing.
*********************
Mostly, I suppose, people want to go back to whatever they used to enjoy Before Cancer. But cancer has changed us, and we're not quite sure who we are any more or what we want.
It's harder for the young ones. So much of their life BC was about socialising. It's okay for me, out in the back of beyond, perfectly happy with my own company and having my few genuine friends only a few taps of the keyboard away- that is, until too many people seem to require me to prove my 'better-ness' by something monumental like taking up parachuting or climbing Everest. (Don't start me on the 'bucket list' concept. I don't have one. I never will. Man plans, God laughs, and there's a hole in the bucket, dear Liza, dear Liza.)
No, actually, I'm quite content to sit here in this chair between compulsory routines and monumental efforts in the lagoon. Allow me my seemingly boring pastimes, please.
But for younger women without my slightly anti-social tendencies, those who want to be accepted back into the fold, to be back where they started- well, sometimes it's tough. I'm old enough to have had some knowledge of human nature forced down my throat by that greatest of teachers, Life. But for them, cancer has thrust that mantle of wisdom upon their shoulders way too early.
They hadn't realised, before this disease marked them out, that what they call 'friends' are probably just an assortment of random strangers, thrust into their lives by a similarity in age or occupation. But now that fact has been forced down their throats in the cruelest way, when they're at their most vulnerable. Faced with the possibility of having to look their own mortality in the eye, many of their so-called 'friends' will cut and run.
See, with their brain these people know everyone dies. Ask any preschooler about the circle of life, and they'll know that people are born, live for a while and then die. But that's not the same as facing the gut-wrenching emotional truth that this also applies to them. A child who actually realises that is usually categorised as having an anxiety disorder.
So for these women who've come together by chance and spent far more time clubbing, getting pissed off their faces and moaning about their problems with their body size or their men than getting to really know each other, contemplating death as anything but a disembodied theory- contemplating it as something that may be actually happening to someone their age- is completely out of left field. What?
No thanks. The Mean Girl comes to the fore with a vengeance, cutting the afflicted one from her carefully styled and highly superficial social group. She doesn't call, she doesn't visit. Cancer isn't cool, and so you're not included.
Because she doesn't want to think about that other group, People Who Die. This, you see, is the crux of our newly-acquired wisdom, thanks to our diagnosis:
People die. You're included.
*****************
Sadly, too many people manage to avoid acquiring that simple wisdom with age. Even some older 'friends' who ought to know better will cross the street to avoid us, rather than catching the faintest whiff of Grim Reaper clinging to our aura. Even, though it seems unspeakably cruel, some of our closest relatives- parents, siblings, in-laws.
What will I say to her? they wonder, when forced to think about us and our inconvenient condition at all. They either have to acknowledge we're ill, or pretend it's not happening- which might be tough, given the obvious changes in our appearance.
No thanks. If they're not emotionally invested in us- and many of our acquaintances and some of our family members, for all their protestations, simply aren't- it's way easier to cross the street.
And even if they are invested- well, it's just too awful to think about, and either they're angry with us for needing attention they don't really want to give (because then they'd have to think about it), or their learned social code hasn't taught them how to talk to someone with a possibly terminal illness.
No. They don't want to think about it at all. There but for the grace of God...
Ah, yes. God. That's the way many of them will avoid thinking about it. Believe in an eternal life after death, and you don't have to confront your own mortality at all.
Or diet! You can believe in diet. See, it's your fault you got cancer, they imply- or even, in the worst cases, baldly state as you stare at them in amazed horror. You ate the wrong things. You should eat like me and you'll live forever.
Oh, the blame game is a great one for people who are in denial to play. It's your fault because you weren't positive enough (but I'm always positive so I'm safe). They never say the second bit out loud, because they're way too unwise to realise their own motivation.
And so, if we've been part of a large and loose social circle, we may find that we're marooned on our own little island of wisdom, with way too many of our supposed 'support group' either treating us like a leper or splattering idiotic platitudes on us so fast that we can't even find a square inch of silence to throw back a fuck off.
************************
Here on Wisdom Island, rather than getting back into our old social groups and painting the town red, most of us are playing Candy Crush when contemplating the true meaning of the words 'friend' and 'family' gets too painful (and we maybe realise we don't have any of one, the other or both). The re-definition process is an unwelcome accompaniment to the constant nagging anxiety which will be our companion from diagnosis to grave.
It's not all bleak, of course. Knowing what makes a friend, or what counts as true family, is a truly valuable life lesson that can make the rest of our life- however long it is- far more enjoyable and meaningful. It's easier to cut out the dross when you understand what 'dross' looks like.
Me? I'm very lucky to be older and a bit battle-scarred, which is why I feel like I have the perspective to write about it. I've had very few encounters with any Mean Girls during my illness, because the last of them got ejected from my life some years ago in the middle of a different crisis. And the emotionally damaging members of my family are all dead, while the rest have been paying attention, reading my blog and not pretending this is anything but shitty. Huzzah for them.
But I still play Candy Crush.
See, this is how it works. The nagging voice of the Scary Man can't always be silenced by shouting. Shouting at him takes energy, and we don't always have energy to spare. Sometimes the only thing that stops us thinking too much is a repetitive, level-up game.
You might think that we could get the same effect by reading a book, or the newspaper. But no; books and newspapers can lead us to thoughts about friends, families, death. They're full of references to this new wisdom that we're just trying to hide from for a few minutes, just so we can breathe without holding a shield up. Shields are heavy.
There's just enough strategy in that game to occupy our mind and keep the other thoughts out. If we're puzzling how to get a striped lolly and a colour bomb not only created, but located next to each other, we can't be thinking how hard it is that our closest relatives are actually not very nice people, or that our supposed best friend wasn't actually a friend at all, or that a twinge in our back might be a metastasis rather than a pulled muscle.
There's only so long you can think about that stuff without committing yourself to life in a nice white coat with tie-back sleeves, or becoming an axe murderer. So please, don't begrudge us our game playing. Don't tell us we should get out more. (In fact, when you see us playing, just shut the fuck up.) Because sometimes, when you've had the ultimate wisdom thrust upon you and you're realising you may be surrounded by dross, it's a case of crush or be crushed.
"My life is so boring," I wailed to the Bear. "People ask me how I am, and the next question is always what am I up to. And what is there to say? All I do is get up, exercise, clear the lagoon, make dinner and collapse into bed."
I left out the bits about sitting in this chair writing, talking to my friends on Facebook and making Bitstrip cartoons or playing Candy Crush. No need to spoil a good whine with facts.
 |
| Gotta keep laughing or we cry... |
"What do you want to do?" he asked, looking far more distraught than I'd intended. Everything knocks him sideways at the moment, and any sign that I'm the faintest bit upset is like a baseball bat to his temple.
Which stunned me into silence, and not just because I'd realised I was being a royal pain in the arse. What did I want to do? I had absolutely no idea. It's so long since I've had any real choices that I've even forgotten what the choices are; I've sorted out a routine that seems to be manageable, and I'm just putting one foot in front of the other to get through each day. Cancer plays such havoc with your life that picking up the pieces as you emerge from the other end is both exhausting and highly confusing.
*********************
Mostly, I suppose, people want to go back to whatever they used to enjoy Before Cancer. But cancer has changed us, and we're not quite sure who we are any more or what we want.
It's harder for the young ones. So much of their life BC was about socialising. It's okay for me, out in the back of beyond, perfectly happy with my own company and having my few genuine friends only a few taps of the keyboard away- that is, until too many people seem to require me to prove my 'better-ness' by something monumental like taking up parachuting or climbing Everest. (Don't start me on the 'bucket list' concept. I don't have one. I never will. Man plans, God laughs, and there's a hole in the bucket, dear Liza, dear Liza.)
No, actually, I'm quite content to sit here in this chair between compulsory routines and monumental efforts in the lagoon. Allow me my seemingly boring pastimes, please.
 |
| From this angle it looks like I'm halfway there. Bollocks to that- nowhere near it. |
But for younger women without my slightly anti-social tendencies, those who want to be accepted back into the fold, to be back where they started- well, sometimes it's tough. I'm old enough to have had some knowledge of human nature forced down my throat by that greatest of teachers, Life. But for them, cancer has thrust that mantle of wisdom upon their shoulders way too early.
They hadn't realised, before this disease marked them out, that what they call 'friends' are probably just an assortment of random strangers, thrust into their lives by a similarity in age or occupation. But now that fact has been forced down their throats in the cruelest way, when they're at their most vulnerable. Faced with the possibility of having to look their own mortality in the eye, many of their so-called 'friends' will cut and run.
See, with their brain these people know everyone dies. Ask any preschooler about the circle of life, and they'll know that people are born, live for a while and then die. But that's not the same as facing the gut-wrenching emotional truth that this also applies to them. A child who actually realises that is usually categorised as having an anxiety disorder.
So for these women who've come together by chance and spent far more time clubbing, getting pissed off their faces and moaning about their problems with their body size or their men than getting to really know each other, contemplating death as anything but a disembodied theory- contemplating it as something that may be actually happening to someone their age- is completely out of left field. What?
No thanks. The Mean Girl comes to the fore with a vengeance, cutting the afflicted one from her carefully styled and highly superficial social group. She doesn't call, she doesn't visit. Cancer isn't cool, and so you're not included.
Because she doesn't want to think about that other group, People Who Die. This, you see, is the crux of our newly-acquired wisdom, thanks to our diagnosis:
People die. You're included.
*****************
Sadly, too many people manage to avoid acquiring that simple wisdom with age. Even some older 'friends' who ought to know better will cross the street to avoid us, rather than catching the faintest whiff of Grim Reaper clinging to our aura. Even, though it seems unspeakably cruel, some of our closest relatives- parents, siblings, in-laws.
What will I say to her? they wonder, when forced to think about us and our inconvenient condition at all. They either have to acknowledge we're ill, or pretend it's not happening- which might be tough, given the obvious changes in our appearance.
No thanks. If they're not emotionally invested in us- and many of our acquaintances and some of our family members, for all their protestations, simply aren't- it's way easier to cross the street.
And even if they are invested- well, it's just too awful to think about, and either they're angry with us for needing attention they don't really want to give (because then they'd have to think about it), or their learned social code hasn't taught them how to talk to someone with a possibly terminal illness.
No. They don't want to think about it at all. There but for the grace of God...
Ah, yes. God. That's the way many of them will avoid thinking about it. Believe in an eternal life after death, and you don't have to confront your own mortality at all.
Or diet! You can believe in diet. See, it's your fault you got cancer, they imply- or even, in the worst cases, baldly state as you stare at them in amazed horror. You ate the wrong things. You should eat like me and you'll live forever.
Oh, the blame game is a great one for people who are in denial to play. It's your fault because you weren't positive enough (but I'm always positive so I'm safe). They never say the second bit out loud, because they're way too unwise to realise their own motivation.
And so, if we've been part of a large and loose social circle, we may find that we're marooned on our own little island of wisdom, with way too many of our supposed 'support group' either treating us like a leper or splattering idiotic platitudes on us so fast that we can't even find a square inch of silence to throw back a fuck off.
************************
Here on Wisdom Island, rather than getting back into our old social groups and painting the town red, most of us are playing Candy Crush when contemplating the true meaning of the words 'friend' and 'family' gets too painful (and we maybe realise we don't have any of one, the other or both). The re-definition process is an unwelcome accompaniment to the constant nagging anxiety which will be our companion from diagnosis to grave.
It's not all bleak, of course. Knowing what makes a friend, or what counts as true family, is a truly valuable life lesson that can make the rest of our life- however long it is- far more enjoyable and meaningful. It's easier to cut out the dross when you understand what 'dross' looks like.
Me? I'm very lucky to be older and a bit battle-scarred, which is why I feel like I have the perspective to write about it. I've had very few encounters with any Mean Girls during my illness, because the last of them got ejected from my life some years ago in the middle of a different crisis. And the emotionally damaging members of my family are all dead, while the rest have been paying attention, reading my blog and not pretending this is anything but shitty. Huzzah for them.
But I still play Candy Crush.
See, this is how it works. The nagging voice of the Scary Man can't always be silenced by shouting. Shouting at him takes energy, and we don't always have energy to spare. Sometimes the only thing that stops us thinking too much is a repetitive, level-up game.
You might think that we could get the same effect by reading a book, or the newspaper. But no; books and newspapers can lead us to thoughts about friends, families, death. They're full of references to this new wisdom that we're just trying to hide from for a few minutes, just so we can breathe without holding a shield up. Shields are heavy.
There's just enough strategy in that game to occupy our mind and keep the other thoughts out. If we're puzzling how to get a striped lolly and a colour bomb not only created, but located next to each other, we can't be thinking how hard it is that our closest relatives are actually not very nice people, or that our supposed best friend wasn't actually a friend at all, or that a twinge in our back might be a metastasis rather than a pulled muscle.
There's only so long you can think about that stuff without committing yourself to life in a nice white coat with tie-back sleeves, or becoming an axe murderer. So please, don't begrudge us our game playing. Don't tell us we should get out more. (In fact, when you see us playing, just shut the fuck up.) Because sometimes, when you've had the ultimate wisdom thrust upon you and you're realising you may be surrounded by dross, it's a case of crush or be crushed.
Thursday, November 7, 2013
Shouting back at the Scary Man
I'd barely posted the last episode of this blog when Jools materialised on the other end of the phone in tiger mode, shaking a striped finger at me.
"Don't you let that fucking Scary Man get away with talking to you like that!" she growled. "Shout back at him, for fuck's sake!"
See, she's done a lot of work on the crap that our subconscious lays on us. She fights her own non-constructive little voices all the time, trying not to let their negativity rule her life. And she's told me before that it's helpful to put those annoying figures from the depths of our subconscious into a chair and nail them down on what they're saying.
And then answer them back.
So, what the hell. Let's do it! Sit down, Scary Man.
Yeah, you. The one telling me I'm going to be dead before the lagoon is cleared, and the pain over my ribs is metastases, and exercising is pointless, and all that other crap that's been whispered in my ear for the last week.
******************
(The Scary Man looks a lot less scary when I put him in a chair. He's actually quite small, when I take him off my shoulder. He can't even look me in the eye.)
Lights... camera... ACTION!
Now, what was that you said to me?
You'll be dead before that lagoon gets cleared. Because that pain over your ribs is the cancer coming back. So why bother exercising? It hasn't made any difference.
Right. Number 1: yes, it's possible that I might be dead before the lagoon gets cleared, for any number of reasons. What exactly is the point of vocalising that possibility, hmmm? What purpose does it serve?
(silence, while Scary Man inspects his own manicure)
What, no purpose at all, other than to scare the shit out of me?
That'll do.
Well shut up, then. If you're not going to be constructive, you can fuck off. Now, number 2. What's this crap about my ribs?
It's metastases.
Listen, you little fucker. In the last week I've been doing any number of things that could explain that pain. Opening the coffee machine with it braced on my ribs, lifting heavy crates of wet salvinia out of the dam, picking up 20kg bags of stockfeed, getting bitten by a paralysis tick. The pain's in the tissue, not in the bone itself. It only hurts when I push on it, and there's no lump. So the likelihood of it being anything cancer-related is minimal. So why would YOU jump to that conclusion? Just because you CAN?
Yep. Once you've had cancer, every little pain is going to be cancer. That's your fate. Just reminding you.
Well fucking DON'T, thanks all the same.
But you had to take it to the doctor to check it, didn't you? And now you need to have that bone scan, but you're a coward. Nyah nyah-nee nyah nyah! Scaredy cat!
Listen, you arsehole. I don't remember you getting your medical degree. And someone who does have a medical degree is Dr Mellow, and I saw him today, for your information. And he took a damn good look and had a damn good feel, and he sees absolutely no reason for a bone scan. So shut up until you can compete with about ten years of study and god knows how many years of experience in the field of oncology, because until then I'm taking his advice, not yours.
You know you can't beat it. You're all talk. Half your family's keeled over from cancer.
Half my family didn't catch it before it metastasised and take the tough road through all the most brutal treatments known to medicine. And half my family didn't get the chance to take personal responsibility for their wellness on top of accepting all the medical help. And maybe I won't beat it, but I'm going to have fun trying.
Fun? (startled look)
Yes. FUN. I've got all these ways of exercising that I actually enjoy. I'm clearing that damned lagoon, and it's hard work and it'll take forever and a day, but I've already seen one new bird there just from clearing that tiny little bit and that was WONDERFUL. And I'm having fun playing the healthy-treat-replacement game, finding something lovely to eat that I would have told myself before was too expensive to buy and having that instead of crap. Like the punnet of figs I ate on the way home from Dr Mellow's, instead of the usual icecream or chocolate bar. And besides, I like being able to fit into size 12 clothes again. So you can take your 'why bother' and stuff it where the sun don't shine. Here, use this pitchfork.
(exit Scary Man, stage left, muttering 'this is no FUN at all' under his breath)
*******************
Dr Mellow was, in fact, far more interested in genetic testing and the future of my ovaries than the tenderness over my ribs.
"The radiotherapy continues to affect the rib area for quite a long time," he explained. "And you know, I've had people come in worried about a lump which was actually their ribs protruding- they tend to move a little and stick out more afterwards. It all looks fine to me."
Given my family history, he was reasonably confident that I'd qualify for a genetic test to see if I have a predisposition to gynaecological cancers, so he's writing me a referral. What happens from here could change if I get a positive result for one of the faulty genes they've discovered so far. At the very least the ovaries and tubes could be invited to take a last bow before hitting the bottom of the yellow garbage bin, and it's possible that a prophylactic mastectomy on the other side could be indicated.
I'll deal with that when we get there- the idea doesn't worry me too much. Better safe than sorry. In fact I'm relieved; it's good to have reached the stage where we can talk about it. For months I was fobbed off with 'let's get through the treatment first', which I'm pretty sure is oncologist-speak for 'let's see if you're still alive by then'.
I'm still alive.
*****************
And talking of getting through treatment, Dr Mellow says I'm still in active treatment now.
"Very much so. The Arimidex is an extremely active form of treatment for the next five years. It's doing a huge job in preventing recurrence, and it increases your chances of survival a lot."
That came up because I told him the Bear was having some trouble coming to terms with the end of 'active treatment', given his history. Mellow was surprisingly sympathetic to that side of things, and stressed that some counselling was definitely a necessary addition to the coping kit for both of us (a position he shares with Dr Tiger-Jools, who was also waving the virtual finger about that). He even told me how to go about it, and where we could go in town to get a psychologist who bulk-billed.
So I came home and rang Monica, my Breast Care Nurse, who is now chasing up the best psychologist in the district for us. Hallelujah to that, say I, because even though the meltdowns are interspersed with days where the two of us are completely in sync, I know when I need help. And when he does.
********************
And then I breathed deeply and got back in the big lagoon. I could feel the tender area every time I lifted a crate, but you know what? It's actually on both sides. Who knows? I could come out of this with 6-pack abs.
Oh, and our new friend didn't turn up today, but I'm sure he'll be back now he's found us. Here he is, or rather, one just like him.
Turquoise, to set off azure. He'd make anyone feel better.
"Don't you let that fucking Scary Man get away with talking to you like that!" she growled. "Shout back at him, for fuck's sake!"
See, she's done a lot of work on the crap that our subconscious lays on us. She fights her own non-constructive little voices all the time, trying not to let their negativity rule her life. And she's told me before that it's helpful to put those annoying figures from the depths of our subconscious into a chair and nail them down on what they're saying.
And then answer them back.
So, what the hell. Let's do it! Sit down, Scary Man.
Yeah, you. The one telling me I'm going to be dead before the lagoon is cleared, and the pain over my ribs is metastases, and exercising is pointless, and all that other crap that's been whispered in my ear for the last week.
******************
(The Scary Man looks a lot less scary when I put him in a chair. He's actually quite small, when I take him off my shoulder. He can't even look me in the eye.)
Lights... camera... ACTION!
Now, what was that you said to me?
You'll be dead before that lagoon gets cleared. Because that pain over your ribs is the cancer coming back. So why bother exercising? It hasn't made any difference.
Right. Number 1: yes, it's possible that I might be dead before the lagoon gets cleared, for any number of reasons. What exactly is the point of vocalising that possibility, hmmm? What purpose does it serve?
(silence, while Scary Man inspects his own manicure)
What, no purpose at all, other than to scare the shit out of me?
That'll do.
Well shut up, then. If you're not going to be constructive, you can fuck off. Now, number 2. What's this crap about my ribs?
It's metastases.
Listen, you little fucker. In the last week I've been doing any number of things that could explain that pain. Opening the coffee machine with it braced on my ribs, lifting heavy crates of wet salvinia out of the dam, picking up 20kg bags of stockfeed, getting bitten by a paralysis tick. The pain's in the tissue, not in the bone itself. It only hurts when I push on it, and there's no lump. So the likelihood of it being anything cancer-related is minimal. So why would YOU jump to that conclusion? Just because you CAN?
Yep. Once you've had cancer, every little pain is going to be cancer. That's your fate. Just reminding you.
Well fucking DON'T, thanks all the same.
But you had to take it to the doctor to check it, didn't you? And now you need to have that bone scan, but you're a coward. Nyah nyah-nee nyah nyah! Scaredy cat!
Listen, you arsehole. I don't remember you getting your medical degree. And someone who does have a medical degree is Dr Mellow, and I saw him today, for your information. And he took a damn good look and had a damn good feel, and he sees absolutely no reason for a bone scan. So shut up until you can compete with about ten years of study and god knows how many years of experience in the field of oncology, because until then I'm taking his advice, not yours.
You know you can't beat it. You're all talk. Half your family's keeled over from cancer.
Half my family didn't catch it before it metastasised and take the tough road through all the most brutal treatments known to medicine. And half my family didn't get the chance to take personal responsibility for their wellness on top of accepting all the medical help. And maybe I won't beat it, but I'm going to have fun trying.
Fun? (startled look)
Yes. FUN. I've got all these ways of exercising that I actually enjoy. I'm clearing that damned lagoon, and it's hard work and it'll take forever and a day, but I've already seen one new bird there just from clearing that tiny little bit and that was WONDERFUL. And I'm having fun playing the healthy-treat-replacement game, finding something lovely to eat that I would have told myself before was too expensive to buy and having that instead of crap. Like the punnet of figs I ate on the way home from Dr Mellow's, instead of the usual icecream or chocolate bar. And besides, I like being able to fit into size 12 clothes again. So you can take your 'why bother' and stuff it where the sun don't shine. Here, use this pitchfork.
(exit Scary Man, stage left, muttering 'this is no FUN at all' under his breath)
*******************
Dr Mellow was, in fact, far more interested in genetic testing and the future of my ovaries than the tenderness over my ribs.
"The radiotherapy continues to affect the rib area for quite a long time," he explained. "And you know, I've had people come in worried about a lump which was actually their ribs protruding- they tend to move a little and stick out more afterwards. It all looks fine to me."
Given my family history, he was reasonably confident that I'd qualify for a genetic test to see if I have a predisposition to gynaecological cancers, so he's writing me a referral. What happens from here could change if I get a positive result for one of the faulty genes they've discovered so far. At the very least the ovaries and tubes could be invited to take a last bow before hitting the bottom of the yellow garbage bin, and it's possible that a prophylactic mastectomy on the other side could be indicated.
I'll deal with that when we get there- the idea doesn't worry me too much. Better safe than sorry. In fact I'm relieved; it's good to have reached the stage where we can talk about it. For months I was fobbed off with 'let's get through the treatment first', which I'm pretty sure is oncologist-speak for 'let's see if you're still alive by then'.
I'm still alive.
*****************
And talking of getting through treatment, Dr Mellow says I'm still in active treatment now.
"Very much so. The Arimidex is an extremely active form of treatment for the next five years. It's doing a huge job in preventing recurrence, and it increases your chances of survival a lot."
That came up because I told him the Bear was having some trouble coming to terms with the end of 'active treatment', given his history. Mellow was surprisingly sympathetic to that side of things, and stressed that some counselling was definitely a necessary addition to the coping kit for both of us (a position he shares with Dr Tiger-Jools, who was also waving the virtual finger about that). He even told me how to go about it, and where we could go in town to get a psychologist who bulk-billed.
So I came home and rang Monica, my Breast Care Nurse, who is now chasing up the best psychologist in the district for us. Hallelujah to that, say I, because even though the meltdowns are interspersed with days where the two of us are completely in sync, I know when I need help. And when he does.
********************
And then I breathed deeply and got back in the big lagoon. I could feel the tender area every time I lifted a crate, but you know what? It's actually on both sides. Who knows? I could come out of this with 6-pack abs.
Oh, and our new friend didn't turn up today, but I'm sure he'll be back now he's found us. Here he is, or rather, one just like him.
 |
| Sacred kingfisher. Photo by Jeff Melvaine. |
Monday, November 4, 2013
Scary Movie
When I was about 6 or 7 years old, I went visiting one evening with my parents. It was one of those events where all the children are shunted into a back room and left in front of a television, in the belief that this will shut them up so the adults can make whoopee in peace. (Not that my parents were great whoopee-makers. It was a one-off event.)
As the night went on, the tone of the TV programmes changed. By eleven at night, we kids were watching 77 Sunset Strip and an older man was attempting to kill a young girl by stealth. Some of the details are lost to me fifty years later, but I remember vividly the toadstools cooked as mushrooms, which the girl refused to eat as realisation bloomed hideously on her face. The scary man was fingering a noose hanging from a rafter when my mother appeared at the door and hurriedly removed me.
I was an impressionable child, and it was my first experience of stomach-churning dread. I had nightmares for months. I wouldn't eat mushrooms for decades. Fifty years later, I think of that night again as my guts contract in the throes of cancerchondria.
******************
In my bag is a referral for a bone scan, which I'm studiously ignoring. I am determined not to fill my body with yet more radiation, just to curb an anxiety which may well be completely unfounded; I will wait a week and see if my symptoms resolve themselves. This is the logical course, but I know that I'm actually acting out of fear rather than rationality.
There are several possible explanations for the tender, swollen area over my ribs. It feels like a bruise, but there's no visible bruising. When I explore around it, pushing the thin layer of flesh up higher and palpating the actual rib area, there's no pain. It's not in the bone. Surely I don't need the bone scan.
But it's my left side, and I'm remembering Professor Power Ranger telling me that a local recurrence was the most likely complication.
In my head, the noose swings to and fro.
******************
When I can calm myself, I can talk myself through this. The weather is already unseasonably hot and humid, and my arm and chest have been feeling fat and swollen for some weeks as the lymph has more and more trouble draining. Even my hand tingles when the temperature reaches a certain point. The swelling is almost certainly lymphoedema of the chest wall, and I need massage, not scans.
And if it's not that, then it probably has something to do with the paralysis tick which the Bear took out of the nape of my neck two days ago. It was hidden in my hair on the left side, right above the area no longer served by lymph nodes. The bite itself is swollen, seeping and as itchy as hell. Dr Rosie's guess is that the tick is responsibly for both the pain and the swelling, but she's given me the scan referral so I won't spend days winding myself up into a state about it.
I would rather she'd just said it's nothing, come back in a week if it doesn't go away. If she immediately gives me a scan referral, surely she must think it's bad?
She says not. But my brain's not hearing what's spoken. Only what's unspoken.
The Scary Man is still behind the door.
*******************
And then there's that exquisitely sore spot over my ribs. Rosie says a new cancer wouldn't be painful in itself, but it would expand and place pressure on the surrounding tissue- and that would eventually become painful.
She couldn't find a lump, neither pebble-like nor the texture of a firm jelly. That's good, right?
And I have a perfectly rational explanation; when I went to make coffee yesterday with my stovetop espresso maker, I realised with a wince that I'd been bracing it against that exact spot on my chest to open it. It's damn hard to open, but I'm bloody-minded and don't want to hunt up the Bear every time I need something done in the kitchen. So I do it myself.
I've probably given myself some sort of deep tissue bruising there. Idiot.
And then I remember my diagnosis, and how I went to the doctor because I knew there was such a thing as a coincidence.
******************
You see, I can explain it all away, but it doesn't stop the Scary Movie in my head. Until the symptoms go away, the fear will lurk in the back of my mind waiting for an unguarded moment to attack me. Swinging from the rafters, or hiding in a plate of mushrooms.
And if I'm honest, it's a much-needed reminder of what others are going through. Not just my friends in the Pink Sisters, though so many of them stand exactly in these shoes at any given moment; no, closer to home there's someone going through this every day in silence. Someone who's only ever seen the Scary Man win.
His mother's arm shattering nine years post-mastectomy, her bones honeycombed with cancer.
His lover pushing him away with a look, too embarrassed by her disfiguring tumour to let him touch her.
My Bear is doing it tough.
*******************
There are two ways for loved ones to deal with Life After Treatment. They can become completely paranoid, hearing the constant white noise of terror as clearly as their beloved does, or they can go straight into denial.
I'm not sure which is hardest to deal with.
All I know is that it's hard for me to watch the Bear struggling with his demons right now. He has no script for this part of the movie, despite his two agonising rehearsals. I suspect he's only just realised that the fear isn't going anywhere. If I survive, it's conditional- always. There is no end point but death, and if I don't die he doesn't know any way to move on from here.
It's not like I'm back to normal. I'm way better than I was- of course I am- and I'm doing so many things that I used to do. Helping feed the turkeys, looking after the vegie garden, clearing the lagoons, cooking, even occasionally cleaning the house (make that very occasionally).
But peppering the normality there are all sorts of reminders. The morning exercise and stretches. The tablets morning and night. The occasional appointments. The massages. The frequent rests, where I can do nothing more than sit down with the laptop and play silly games or make Bitstrip cartoons.
Worse than all that are my new little quirks and my all-too-big brain explosions. My mind's all over the place, thanks to being poisoned. I can tell the Bear exactly what he said to me two weeks ago one minute, and completely forget a phone message from two hours ago the next. The other day I went to put my swimmers on and, because they were partly inside out, had to spend a good thirty seconds staring at them to work out where to start. This, from the woman who used to untangle everyone else's knitting snarls? I don't even recognise myself.
I see the Bear's fear in his eyes. Is she getting dementia? he wonders, terrified beyond words.
The Arimidex gives me odd and unpredictable moments of insanity. I am suddenly engulfed by heat, or something small goes wrong, and I plunge from completely rational to a screaming mess (or, less often, a tearful mess). Everything is too much trouble, and everyone can just fuck off and leave me alone because I've been here once already with menopause and it wasn't fun then and it's not fun now and I don't want to be here.
I have zero control of what I say at these moments. I look back later in complete humiliation, embarrassed by my own lack of compassion. Honestly, I'm not like that. I'm a very resilient, patient person.
I was a very resilient, patient person. Sometimes the Bear looks at me as if he's wondering who the fuck I am, and what I'm doing in his house.
And whether he can cope with this for a single second longer.
********************
Of course, I can't persuade him to see anyone about his scrambled feelings.
"I'm not talking to a stranger," he says.
Useless to point out that unless we happen to have a friend who's a therapist, we all start out talking to a stranger and hoping they're the right one when we start counselling; he's a man's man, the door to his feelings well and truly bolted shut, and he's not opening up to someone he hasn't learned to trust over a period of years.
So we struggle through each day, sometimes connecting, sometimes locked in our own private hells. Times like this don't help, when I feel I have to tell him I'm seeing the doctor about a symptom but want nothing more than to keep it to myself and pretend it's not happening.
There are times when I honestly think it might be easier to do this alone.
********************
See, I'm having enough trouble coping with my own head and keeping the Scary Man behind his door. Things just jump into my mind sometimes, and once they're thought I can't unthink them.
Like this. I finished clearing the azure kingfisher's lagoon a week or so ago, and the logical thing to do next was start on the big lagoon so the bloody salvinia doesn't wash back in in the next flood.
I've made a bit of a dent in it, with my brother's help to clear the edges and the Bear carting the drained weed away every day.
But yesterday I stood looking at that vast expanse of work-to-do and before I could stop him, the Scary Man leapt out and said you'll be dead before that's finished.
So now I'm fighting him off. Pushing him back behind the door. I went inside and found the Ixodes (it's a homeopathic remedy for tick bite) and took a dose, and took another this morning. I massaged my chest, and when I got tired I got the Bear to massage it some more. This morning I went back to the hoola hooping on the Wii, because I know it helps stimulate the groin lymph nodes into action, and I did my deep abdominal breathing while I gyrated to give those nodes an extra kick in the guts.
And yes, it does feel a little better now. There's still a sore spot, but it's not quite as tender and the swelling has receded a little. When I can manage to put the Scary Movie on pause for a moment, my instinct is saying it's all going to be fine.
But only time will give me the answer. And even if it's a reassuring nod, it'll be valid for this screening only. The Scary Man is someone we all have to learn to live with when the Freeloader comes calling.
I'll keep you posted.
As the night went on, the tone of the TV programmes changed. By eleven at night, we kids were watching 77 Sunset Strip and an older man was attempting to kill a young girl by stealth. Some of the details are lost to me fifty years later, but I remember vividly the toadstools cooked as mushrooms, which the girl refused to eat as realisation bloomed hideously on her face. The scary man was fingering a noose hanging from a rafter when my mother appeared at the door and hurriedly removed me.
I was an impressionable child, and it was my first experience of stomach-churning dread. I had nightmares for months. I wouldn't eat mushrooms for decades. Fifty years later, I think of that night again as my guts contract in the throes of cancerchondria.
******************
In my bag is a referral for a bone scan, which I'm studiously ignoring. I am determined not to fill my body with yet more radiation, just to curb an anxiety which may well be completely unfounded; I will wait a week and see if my symptoms resolve themselves. This is the logical course, but I know that I'm actually acting out of fear rather than rationality.
There are several possible explanations for the tender, swollen area over my ribs. It feels like a bruise, but there's no visible bruising. When I explore around it, pushing the thin layer of flesh up higher and palpating the actual rib area, there's no pain. It's not in the bone. Surely I don't need the bone scan.
But it's my left side, and I'm remembering Professor Power Ranger telling me that a local recurrence was the most likely complication.
In my head, the noose swings to and fro.
******************
When I can calm myself, I can talk myself through this. The weather is already unseasonably hot and humid, and my arm and chest have been feeling fat and swollen for some weeks as the lymph has more and more trouble draining. Even my hand tingles when the temperature reaches a certain point. The swelling is almost certainly lymphoedema of the chest wall, and I need massage, not scans.
And if it's not that, then it probably has something to do with the paralysis tick which the Bear took out of the nape of my neck two days ago. It was hidden in my hair on the left side, right above the area no longer served by lymph nodes. The bite itself is swollen, seeping and as itchy as hell. Dr Rosie's guess is that the tick is responsibly for both the pain and the swelling, but she's given me the scan referral so I won't spend days winding myself up into a state about it.
I would rather she'd just said it's nothing, come back in a week if it doesn't go away. If she immediately gives me a scan referral, surely she must think it's bad?
She says not. But my brain's not hearing what's spoken. Only what's unspoken.
The Scary Man is still behind the door.
*******************
And then there's that exquisitely sore spot over my ribs. Rosie says a new cancer wouldn't be painful in itself, but it would expand and place pressure on the surrounding tissue- and that would eventually become painful.
She couldn't find a lump, neither pebble-like nor the texture of a firm jelly. That's good, right?
And I have a perfectly rational explanation; when I went to make coffee yesterday with my stovetop espresso maker, I realised with a wince that I'd been bracing it against that exact spot on my chest to open it. It's damn hard to open, but I'm bloody-minded and don't want to hunt up the Bear every time I need something done in the kitchen. So I do it myself.
I've probably given myself some sort of deep tissue bruising there. Idiot.
And then I remember my diagnosis, and how I went to the doctor because I knew there was such a thing as a coincidence.
******************
You see, I can explain it all away, but it doesn't stop the Scary Movie in my head. Until the symptoms go away, the fear will lurk in the back of my mind waiting for an unguarded moment to attack me. Swinging from the rafters, or hiding in a plate of mushrooms.
And if I'm honest, it's a much-needed reminder of what others are going through. Not just my friends in the Pink Sisters, though so many of them stand exactly in these shoes at any given moment; no, closer to home there's someone going through this every day in silence. Someone who's only ever seen the Scary Man win.
His mother's arm shattering nine years post-mastectomy, her bones honeycombed with cancer.
His lover pushing him away with a look, too embarrassed by her disfiguring tumour to let him touch her.
My Bear is doing it tough.
*******************
There are two ways for loved ones to deal with Life After Treatment. They can become completely paranoid, hearing the constant white noise of terror as clearly as their beloved does, or they can go straight into denial.
I'm not sure which is hardest to deal with.
All I know is that it's hard for me to watch the Bear struggling with his demons right now. He has no script for this part of the movie, despite his two agonising rehearsals. I suspect he's only just realised that the fear isn't going anywhere. If I survive, it's conditional- always. There is no end point but death, and if I don't die he doesn't know any way to move on from here.
It's not like I'm back to normal. I'm way better than I was- of course I am- and I'm doing so many things that I used to do. Helping feed the turkeys, looking after the vegie garden, clearing the lagoons, cooking, even occasionally cleaning the house (make that very occasionally).
But peppering the normality there are all sorts of reminders. The morning exercise and stretches. The tablets morning and night. The occasional appointments. The massages. The frequent rests, where I can do nothing more than sit down with the laptop and play silly games or make Bitstrip cartoons.
Worse than all that are my new little quirks and my all-too-big brain explosions. My mind's all over the place, thanks to being poisoned. I can tell the Bear exactly what he said to me two weeks ago one minute, and completely forget a phone message from two hours ago the next. The other day I went to put my swimmers on and, because they were partly inside out, had to spend a good thirty seconds staring at them to work out where to start. This, from the woman who used to untangle everyone else's knitting snarls? I don't even recognise myself.
I see the Bear's fear in his eyes. Is she getting dementia? he wonders, terrified beyond words.
The Arimidex gives me odd and unpredictable moments of insanity. I am suddenly engulfed by heat, or something small goes wrong, and I plunge from completely rational to a screaming mess (or, less often, a tearful mess). Everything is too much trouble, and everyone can just fuck off and leave me alone because I've been here once already with menopause and it wasn't fun then and it's not fun now and I don't want to be here.
I have zero control of what I say at these moments. I look back later in complete humiliation, embarrassed by my own lack of compassion. Honestly, I'm not like that. I'm a very resilient, patient person.
I was a very resilient, patient person. Sometimes the Bear looks at me as if he's wondering who the fuck I am, and what I'm doing in his house.
And whether he can cope with this for a single second longer.
********************
Of course, I can't persuade him to see anyone about his scrambled feelings.
"I'm not talking to a stranger," he says.
Useless to point out that unless we happen to have a friend who's a therapist, we all start out talking to a stranger and hoping they're the right one when we start counselling; he's a man's man, the door to his feelings well and truly bolted shut, and he's not opening up to someone he hasn't learned to trust over a period of years.
So we struggle through each day, sometimes connecting, sometimes locked in our own private hells. Times like this don't help, when I feel I have to tell him I'm seeing the doctor about a symptom but want nothing more than to keep it to myself and pretend it's not happening.
There are times when I honestly think it might be easier to do this alone.
********************
See, I'm having enough trouble coping with my own head and keeping the Scary Man behind his door. Things just jump into my mind sometimes, and once they're thought I can't unthink them.
Like this. I finished clearing the azure kingfisher's lagoon a week or so ago, and the logical thing to do next was start on the big lagoon so the bloody salvinia doesn't wash back in in the next flood.
I've made a bit of a dent in it, with my brother's help to clear the edges and the Bear carting the drained weed away every day.
But yesterday I stood looking at that vast expanse of work-to-do and before I could stop him, the Scary Man leapt out and said you'll be dead before that's finished.
So now I'm fighting him off. Pushing him back behind the door. I went inside and found the Ixodes (it's a homeopathic remedy for tick bite) and took a dose, and took another this morning. I massaged my chest, and when I got tired I got the Bear to massage it some more. This morning I went back to the hoola hooping on the Wii, because I know it helps stimulate the groin lymph nodes into action, and I did my deep abdominal breathing while I gyrated to give those nodes an extra kick in the guts.
And yes, it does feel a little better now. There's still a sore spot, but it's not quite as tender and the swelling has receded a little. When I can manage to put the Scary Movie on pause for a moment, my instinct is saying it's all going to be fine.
But only time will give me the answer. And even if it's a reassuring nod, it'll be valid for this screening only. The Scary Man is someone we all have to learn to live with when the Freeloader comes calling.
I'll keep you posted.
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