Thursday, November 29, 2012

Roses and tribulations

Here is a rose for you.
Try to focus on the rose,
not on the rocks.
The rocks are much clearer.
But look at the rose.
Got it? That's where I am.
I think I'm running out of adrenaline.

I mean, I guess I had to crash some time. You were probably all waiting for it. You've probably been thinking, "Hang on a minute. The woman's been diagnosed with cancer, FFS, and she's carrying on like it's a career opportunity. She's writing, like, a friggin' book about it online. WTF? She's cruising for a bruising here."

Ouch. Don't mention the bruising. It probably is NOT helping my mood that the severed nerves in my left arm are still screaming blue murder, and according to Dr Goodguy will continue to do so for another couple of months. The feeling is exactly like having a huge bruise, one that extends from my underarm to the point of my elbow; every time that stretch of flesh touches anything, I wince.

Not the best spot for feeling mashed. When I try to go to sleep or just sit down to rest my arm, that's the part of my arm that contacts the supporting pillow or the arm of the chair. It's like having a tribe of fire ants bite me every time I try to give myself a break.

Or like resting my arm on hot rocks. Yep, that's it. (Look at the rose, Candy.)

Pain wears you down in the end. And the arm's not the only problem; my armpit's still swollen to hell, and it aches like crazy, all the time. Then every so often, out of the blue, I get an arrow of fire whooshing across the scar on my chest. I yelp like I've been shot, and the Bear has a fit because he thinks I've suddenly developed some fatal complication. He's not quite recovered from his last partner going into a diabetic coma without warning, thanks to the chemo; he keeps waiting for something diabolical to happen to me, too.

Our nerves are in shock, I guess- his figuratively, mine literally. The ends will take a while to heal over. While we wait for that to happen, I have to try to be patient. And he has to try not to jump to Worst Case at the drop of a hat.

Then there's what I call Phantom Tit Syndrome. I could swear sometimes that my left breast is still there, and that the nipple's jangling with cramp. It's quite mind-bending actually, to feel pain in something non-existent. It's like receiving messages from a dead person, posted long ago and delayed by an incompetent mail system.

Kind of creepy.

And what do you do with those messages? They're undeliverable. I could massage the pain away, or something, if the breast was still there- but there's nothing to touch, no pressure point to use to relieve the discomfort. My brain just hasn't worked out that it needs to send those impulses straight to the dead letter office.

Not known at this address. Return to sender. Left tit has left the building.


Meanwhile, here I am trying to wean myself off the painkillers before I get myself pumped full of poison for the first time on the 11th. There's only so much shit a body can stand- that's my view- and the less random chemical stuff I'm taking, the more chance my normal cells will have to survive the chemo.

So the easy option- take more mind-bending shit to control the pain- is not striking me as particularly wise. I want to give myself the best chance of standing up to the beating my body's about to take. I'm trying to eat sensible stuff, to keep reasonably active without overdoing it, to do my goddamned lymphoedema exercises faithfully every single morning, to rest when I'm tired, to keep cool despite the terrible heat here at present- you know the deal. And, of course, to limit the number of unnatural substances I ingest. Common sense things that we don't always pay attention to, until a diagnosis comes and taps us on the shoulder.

Hello, you have cancer. Pay attention to this shit or die.


Everybody's trying to help me have the best chance of living, too. People are falling over themselves to help me. It's a bit stunning, how many people are holding their hands up to do something for me.

Sometimes that presents as just being there for me when I need to whine (you know who you are, Gardeners and friends), or talking about my cancer openly when they pop round instead of shoving it in a closet because it's too confronting (hello Bob). Sometimes it presents as saying positive, accurate things; you've got the constitution of a fuckin' ox (thanks Vi for that reminder) is helpful, because it's true.

Some people are providing stuff they know will be useful (pre-cooked meals, front-opening shirts, vitamin E cream and Moo Goo, you name it- thanks everyone), or stuff that reminds me that they're thinking of me (I'm still wearing the bell, Christine). Some are sharing their professional knowledge (yes, Jools, I'm keeping up the paracetamol and ibuprofen during the day and I'm taking the night-time narcotic still- it's just not enough sometimes).

I have so much to be grateful for. But here I am in the pits of despond, regardless. All I can see right now is the wearying endlessness of it all- the trials and tribulations of a cancer diagnosis.

Oh come on, girl, be honest.

It's not just the pain. Some of the stuff I'm doing isn't helpful, and I've got to stop doing it.

Thinking too hard upon some of the side effects of chemo, for example, is not helping. The stuff I can't prepare for, or do anything about. Like, I don't look forward to wearing frozen mittens to help save my nail beds (my hands are a little arthritic already, and cold makes the pain much worse). I'll do my part by wearing black nail polish, but the rest- well, I'll just have to try to cope with that when it happens.

I've done everything I can to soften the loss of my hair, but staring at it in the mirror and noticing how good it's looking at the moment- nah. It's going to fall out. Dr Mumbles assured me it would. No getting round it, no hope. Try to forget it, for now.

People tell me that the nausea drugs are much better these days. And then Dr Mumbles tells me I almost certainly will feel nauseated, and I'll probably throw up. And I'll probably have constant diarrhoea.

Oh great. Eighteen weeks of that?

I've bought the Maxolon. I've bought the Immodium. The freezer's got lots of pre-made meals in it, thanks to cousin Nancy. Not a lot more left for me to do to displace the anxiety, so I just think about what's coming and feel like crap already.

I'm running out of try.

Most of all, I don't want to think about losing my mind to the syndrome known as 'chemo brain'; if that happens to me, especially if it happens permanently, you may well see me heading for the exit. I'm acknowledging that it's a possibility, but I have to try not to dwell on that stuff- even if I'm right out of try. Dwelling on what might happen isn't helping me to cope.

So I pick up The House at Pooh Corner. Winnie the Pooh has wise advice on worry, as Jools kindly reminded me some time ago as I waited for yet another terrifying round of results. Walking through the Hundred Acre Wood on a blusterous day, Piglet says:

"Supposing a tree fell down, Pooh, when we were underneath it?"

And Pooh replies, after careful thought:

"Supposing it didn't."

Supposing I got memory loss and confusion? Supposing I couldn't string my words together any more like pearls on a string, the way I can now? Supposing it turned out that my blogging, the best crutch I own to get me out the other side of this, disintegrated into a worthless mass of disorganised thought?

Supposing it didn't.


Even seemingly innocuous activities can rear up and bite me. Looking through all my old photos this morning, while I was trying to find the perfect shot of a red rose that I swore I had somewhere in the files, I got myself thoroughly depressed.

Here I am, a month before I was diagnosed. Two months before. A year before. So carefree. So full of plans.

What if I'd had that mammogram back then?

Here I am all dressed up to go out, showing the cleavage I don't have any more.

There I am doing some heavy work in the garden, or helping move the logs for our extension. I can't do that with a lymphoedema-prone arm. That part of my life is closed now.

And that reminds me that I don't like the restrictions. I hate them. I don't want to do a zillion massages and exercises and stretches every single morning for the rest of my life. I don't want to be careful of my arm. I never wearing gardening gloves. I've always been haphazard about wearing insect repellant and keeping out of the sun. That has never been who I am.

Stop dwelling on it, girl, I try to remind myself as I stretch my arm upwards yet again. Not too far. Just enough to keep it flexible, without making the armpit swell some more. Just do it, and get it over with. 

If I live through all the tomorrows before they get here, they'll get lived through more than once. And that's crazy.

Just do it.


As I lay in the dentist's chair yesterday- because as I told you before, cancer has no respect for what you had planned, and I was in the middle of a three-stage process to get a tooth crowned when I was diagnosed- while I lay there for two hours with my mouth open and my arm aching like hell, I was listening to some music on the iPod (thanks, Laura). I've always loved Benjamin Britten's choral works, and they figure heavily in my classical play list. He has an unerring instinct for picking amazing lyrics and making them jump off the page and fly into your mind, as if for the first time.

So it was with W. H. Auden's Hymn to St Cecilia yesterday. It's a difficult work to get to know, in musical terms, but once it gets to you it has you hypnotised for life. I've loved it a long time- it has a place on the play list for my funeral- and I've heard the last line of the text many, many times before. But yesterday Britten made Auden reach out of his grave, grab me by my self-pitying throat and speak directly to me anew as I lay in that chair feeling thoroughly miserable.

O wear your tribulation like a rose.

And so I will try. Today's post presents to you my tribulation, on a platter of harsh reality. I have no choice but to wear it, but I can choose how to wear it.

I choose to offer it to you, like a rose. You have been so kind. You deserve to know that not every day is an up day, and I can't always find the light.

This is a better picture than the one I couldn't find, anyway. You can see right into its heart.


  1. I wish I could tell you that after a while, physical disabilities stop chafing you with their constrictions. Well, it's been 14 years for me, and it still hasn't happened. But after a while you *do* get a very good sense of your limits, and eventually, if you're careful and persistent, you can push them. If you haven't read the spoon theory, you really should. It's here:

    You're never going to be able to take your body, or your health, for granted again. But that's not necessarily a bad thing. Remember, pain killers aren't a sign of weakness, that you've given up, that you can't just harden the fuck up already. That's what they are to normals, and you can laugh at their pain tolerances later. For people like us, they're just a tool to use to improve function. Surely you've felt the frustration of not having the right tool for a job? (I'd use some sort of gardening metaphor here, but I know bugger all about gardening. Um... a shovel when you need a rake? A turkey when you need a donkey?) Why on Earth would you feel guilty about using the tool you need? Don't skimp on the drugs because they're 'unnatural' - surely the advice you were given after your first surgery, that inadequate pain management = more likely chronic pain still applies? Is it worth the risk just to have fewer drugs in your bloodstream? You won't be carefree-healthy again, but I'd really rather you didn't join me at the metaphorical chronic pain table.

    1. Hmm. True about the drugs I think. And I love the spoon metaphor. Just takes a bit of adjusting, I guess...