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.

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.

Sacred kingfisher. Photo by Jeff Melvaine.
Turquoise, to set off azure. He'd make anyone feel better.

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.