Just When You Think You’ve Got It Figured Out––

––you attempt to walk to the bus stop and find you have to stop halfway so you can puke.

I’m lucky I’m married to a man I can’t embarrass.

I was trying to get to an appointment yesterday morning and I really thought I could do it. But I’m in the second half of treatment now and the side effects are getting a bit more intense. The V is bigger, the angle is steeper, and there are a few more bad days at the nadir than before. 

So what was my first thought? That anyone seeing me would think I’d been drinking at 10:00 a.m. Like that’s my biggest worry––what will the neighbours say? Old reflexes die hard, I guess.

We managed to get to a different, closer bus shelter on the way, so it wasn’t like I was right out in the middle of the sidewalk where I could gross out the general public. Chris held onto me, reassuring me until I felt steady enough to get back to the house, which was maybe all of a block away. 

Pretty dismaying but that’s how it is. Sometimes you’re doing the mambo with your IV pole and other times you’re puking at bus stops. Since then I’ve been okay but I haven’t attempted anything more ambitious than going from one room to another.

Next week is round five out of six total. We’re nearing the home stretch. It’s okay. Every so often I take out the latest progress report letter from the oncologist and look at what it says about how I’ve been responding to chemo. It’s good news all the way through––the cancer cells are dying off and there’s some other reading that has been reduced to a third of what it was before I started chemo. 

And so what if I puke a little, even in public? I’m getting there. I’m getting there. I’m getting there!

What The F#@$ Am I Supposed To Say?

Beats me, and I’ve been there more times than I care to think about. People I’d known for over twenty years suddenly developed terrible, virulent cancers and I was struck speechless. Of course I wanted to tell them I wished it hadn’t happened to them, that I wanted to offer support in any and every way possible, that I cared, that what happened to them mattered to me. So where was the perfect sentence? I’m a frickin’ writer, for chrissakes––what was wrong with me that I couldn’t come up with something?

There are no articles on finding the right thing to say. However, there are plenty of articles on what not to say. There’s one that even has a diagram of concentric circles to show which way the talk should flow. The affected person is at the bull’s-eye; arrows indicate comfort should flow inward, while anything involving complaints, unhappiness, or other less-than-comforting talk should go the other way. You’re supposed to figure out which circle you’re in with respect to the people around you, and talk accordingly.

As the person located at the bull’s-eye, if I may be so bold: this is a great exercise in shutting people up.

What the FUCK do you say to a friend burdened with telling you, I’m very ill and I might not have long to live? You could say this news upsets you, makes you sad, you feel awful––but jeez, how stupid is that? Maybe they’ll reply with something like Oh, I’m so sorry, this is the world’s smallest violin playing a sad song for ruining your day or You poor thing, is there anything I can do?

Nobody wants to be an asshole to a seriously ill friend. Stumped for something to say, many people end up saying nothing for a long time and then find themselves making awkward apologies for saying nothing for a long time.

Life ain’t easy and this shit makes it even harder.

I’ve thought a lot about this because, as I said, I’ve been the friend wondering what the hell to say. Iain Banks was a friend for over twenty years; when his wife Adele put up a page for people to send him good wishes after he was diagnosed with cancer, I sat at the computer for two hours before I came up with something.

I’d known Graham Joyce almost as long; the last time I saw him, I found myself staring dumbly into his face as he told me about the aggressive nature of his cancer.

Graham wasn’t waiting for me to say the perfect thing about that. There was no perfect thing to say about that; there still isn’t, and there never will be. Graham was just talking to me because we were friends, we were at a publisher’s party, and we always caught up with each other at parties. I’m not sure what I said, finally, but the conversation went on. So did Graham, for a while, though not nearly long enough.

In fact, the last time I saw Iain Banks was at a party he threw in London. He invited all his friends because he wanted to make sure he had a chance to see them before he became too ill, or worse. It was a deliberate act of defiance, not just of cancer but of the what-the-fuck-do-I-say syndrome. Iain made his way around the room and talked to every single person there, putting everyone at ease. He wasn’t Terminally-Ill Iain, he was the Iain we always knew, talking, laughing, joking, having a ball.

I was already ill myself at the time, though I didn’t know it. When I said good night to Iain, I told him that he was still the handsomest man in Scotland (if you argue about that with me, I’ll punch you). Iain thanked me for my flattery and promised, “I’ll see you again, Pat.” He was so strong at the time, I thought there was a chance and I was shocked and saddened when he passed away not long after. (I do, however, believe he’ll keep that promise; it just won’t be here.)

I’m pretty sure it was watching Iain at his party that put this in the back of my mind. It was a genuinely happy occasion, because that was Iain––he was a happy occasion on two legs, and any party he was at became a super-party thanks to his good nature (trust me, I’m experienced).

Iain had not invited people to come and say the exact perfect thing to him. He just wanted to be with them. He knew we would want to see him and he made it easy for us to do that. I know, the concentric-circle diagram says comfort flows inward; you figure out what circle you’re in and you comfort people closer in than you are, but you must not expect people closer in to comfort you. But when Iain Banks was at the centre of the bull’s-eye, he flipped it and put all his friends there instead, and did something nice for them.

As the person in the bull’s-eye, I want to comfort my loved ones.

I want to tell my loved ones, particularly those who are still lost for words and can’t find their voices yet, that I know you don’t know what to say and that’s all right, it doesn’t matter.

My oncologist is the only person who could ever say the perfect thing to me––viz., Ms. Cadigan, you’re totally cured and tests show you’ll live to be 150, it’s a miracle! Everybody else is off the hook.

You don’t have to say anything but what you usually say to me. It is not one moment that matters but the totality of a relationship. If we were friends before this happened, we’re still friends now. You’re not obliged to try to find something perfect to say. The fact of your friendship is comfort enough, comfort that’s been there all along.

Win-win!

Chemo K-O

You can try to prepare yourself for something you know is coming but you’re never quite ready for when it hits you in fact. 

Paul McAuley told me that chemo is cumulative and each round will add to what has gone before, so the last few will be tougher than the first. Paul’s chemo was tougher than mine. I’ve had moments of feeling debilitated while sliding down the V but I wasn’t ready for not being able to rely on my physical ability or condition. E.g., if I went out this afternoon, I could not guarantee that I would not collapse somewhere, unable to do anything to help myself.

At the moment, I’m so debilitated that I don’t even have the strength to be in denial about how weak I am. Now that’s what I call debilitated. Because I am, after all, the Chemo Pole Dancer. Chemo Dance Party! Sick, me? Don’t be ridiculous, here I am doing the Twist!

Even the most well-adjusted soul has to understand that, yes, you’re refusing to let cancer beat you but you have to adjust to what is physically possible. And sometimes, what’s physically possible is…well, not much.

But it doesn’t mean surrender. 

Hear that, cancer? No surrender––and no prisoners!

And Then There Are Days Like This:

Woke up this morning––in your face again, mortality!––and for the second Monday in a row, I don’t feel good. But this is different. Today, I have a sore throat but no fever. Phoned Day Care at the Macmillan Centre: I’m to keep an eye on my temperature and call back if it goes up, or if I start to feel worse. I really don’t want to end up back in hospital this week. I just finished the antibiotic, which requires buckets of yogurt to counter the imbalance and discomfort it causes. Plus, I’ve got––well, had––plans this week.

Yeah, that sound you hear is God, laughing.

When you’re on chemo and you wake up like this, you can’t take paracetamol or anything else that would reduce your fever or make you more comfortable because it could mask the fact that you’re neutropenic. Which would be bad. You either have to get permission or get them while you’re in hospital.

Sliding down the V for sure. Looks like this week’s angle is precipitously sharp. No Dance Party today. I can deal. It’s not my favourite time but I can deal––but only because I have help.

This is one of the times that is hardest on a cancer patient’s carer. Chris will have to do just about everything for me today because I may not be able to do more than walk to and from the loo…and I’ll only be able to do that if I’m not carrying anything, not even a bottle of water. My upper body strength is non-existent. If I have to get dressed to go into hospital after all, Chris will practically have to dress me––he’ll even have to tie my shoes.

I’m lucky to have Chris. And later today or tomorrow, depending, Amanda our part-time lodger will be back. She always infuses the house with positive, upbeat energy anyway and we can count on her if we need an extra pair of hands. Amanda is our secret weapon––moral support for Chris as well as for me.

It’s not just important for a cancer patient to have a carer––it’s important for the carer to have back-up. A cancer patient is a heavy weight that needs to be distributed.

Sir Terry Pratchett

I found the above photo on James Worrad’s blog (click on the photo to visit). This is utterly and endearingly brilliant.

Sir Terry Pratchett is an example of someone who developed his talent and used it to leave his part of the world better than he found it.

Obviously Sir Terry’s books succeeded because they are so entertaining. But they are so entertaining because the spirit of the man himself is in all of them––and his spirit had a profound love for humankind, warts and all. If that weren’t true, we wouldn’t be seeing this outpouring of grief.

There is one privilege we all get and it is this: life. What are you doing with yours? No one expects you to cure cancer or Alzheimer’s or bring peace to the Middle East; if you can, great, please do so (especially the cancer part). 

But if you’re like the rest of us––and if you’re readng this, you almost certainly are––you can honour Sir Terry’s memory by doing what you can to leave your little corner of the world better than you found it, with whatever your particular gifts may be––writing, art, dance, understanding, teaching, organising, nurturing, healing, exploring. And, always, loving.

Meanwhile, I’ve been thinking about a shirt for myself.

GIBSON’S BUSY

STERLING SAID FUCK OFF

SHIRLEY’S BOOKED TILL 2050

I’M PAT CADIGAN––DEAL WITH IT

Chemo Dance Party: Don’t Wait To Live

I got a little crazy even for me yesterday during chemo. I decided to have a Chemo Dance Party.

First, I did a little pole dancing:

Then I moved on to the Twist:

Chemo, Chemo––Cha-Cha-Cha!

Followed by the Bump––

Mambo Italiiano––

“All you Calabrese do the Mambo like-a crazy…”

It’s Just A Jump To The Left, And Then A Step To the Right––

Put Your Hands On Your Hips And Bring Your Knees In Tight––

Hey, Macarena!

And partway through this post, the edit-photo utility fell over and died––probably overwhelmed by Dance Party Excess––so the last photos are a bit in-your-face large. No, don’t explain how I can fix it, you’ll only confuse me. Software baffles me. I’m a hardware girl––I can build a pc but I know just enough to tell you whether you have a hardware problem or a software problem. If it’s a software problem, I can’t help you.

And those photos sure are in-your-face large. I hope they haven’t sent anyone running into the streets screaming in terror. Because that’s a whole lot of cancer patient filling up the screen. I’ve never been this heavy in my life.

This was me some twenty-odd years ago, at a science-fiction convention in Texas::

which, at my age, is not that long ago. I had hopes of preserving that jawline. Well, we all get older and sometimes the things that happen to the body are things we have no control over––no matter what you’re told by all those magazine articles and skinny young people who think “I’d never let myself go like that.

Yeah, I’m a little defensive about being heavy. I was too heavy before I developed cancer and the form my cancer took made me even heavier. (What, you thought all cancer patients looked tragically thin and wasted? Ha!) The good news about how well the chemo is working on diminishing the cancer cells does not mean my body will automatically rebound to its pre-cancer state––I’ve got a lot of work ahead of me after chemo. Not that I think I’m going to restore myself to that younger woman in the above photo. I have to get myself in condition to walk a block without needing to rest my back, so I can put on my clothes without being so winded that I have to sit down. So I can just run out to a shop on Green Lanes when I want something instead of asking Chris. So I can go shopping with my friends and not bug out and taking a cab home so I can lie down. No doubt my appearance will improve but I’m in my 60s and I’m not Madonna. Anyone who thinks I’m hard to look at can stop staring and look at something else, thank you so much, I’m sure.

Yeah, a little defensive. Just a little.

Women are judged on their looks. We know it; we all do it, no matter how we ourselves look. And men aren’t immune. A plus-sized man at a club/concert was enjoying the music and gettin’ down with his bad self when some wretched bastards put a stop to his enjoyment by making fun of him. That got him to stop enjoying himself––how dare he feel like dancing in a body like that? No, he wasn’t bothering them or hitting on them––they just objected to his appearance. Fortunately, a group of women decided to make it up to him by inviting him to a dance party in his honour, where they would all dance with him. (Google this; I’m too lazy to do it but it should be easy to find.)

That’s a wonderful thing to do. But I don’t think we’ll see the opposite––men giving a party for a plus-sized woman––any time real soon.

When a fat woman walks down the street, no one thinks, Poor thing is probably so busy working a job and taking care of her family that she has no time to eat right or get enough exercise. It’s usually more like, God, didn’t anyone tell her women her size shouldn’t wear such loud prints and Christ, look at all that cellulite.

And if she dares to eat in public, it gets worse. I was at Heathrow one night waiting for a friend to arrive and I was eating an ice cream bar, the first food I’d had since breakfast. An older man came up to me and said, “A minute on the lips, a life-time on the hips!” Being me, I replied, “That may be true, but it’s tacky to point it out.”

Judging from the look on his face, it was the first time a fat woman had dared talk back to him.

It’s rough for us out there. It’s rough for any woman; even most women who aren’t fat are sure they’re too heavy. People talk about obesity as an epidemic, like it’s a disease. If so it’s a rara avis––a lot of people will blame you for catching it. It’s your own fault for sitting around eating so much.

Right. Because everything tastes so good that we’d rather be fat than stop.

Lots of things put weight on people. Antidepressants are notorious for weight-gain. Ironically, they can also reduce appetite. So you get a lot of people who aren’t that hungry suddenly packing on the pounds. That’s right, there are drugs that reduce appetite and cause weight gain, and they’re prescribed to people who feel like killing themselves. What’s wrong with this picture? If they’d just figure out how to switch that around––increased appetite and weight loss––they wouldn’t even have to put in the anti-depressant part.

I’ve been taking antidepressants for twenty years; it’s how I got fat. I can deal with the weight better than the depression. It’s hard to lose weight but not totally impossible. Depression, on the other hand, is just…No.

Antidepressants aren’t the only things that have this effect. Various illnesses will put weight on you. So will plain old misfortune. If you’re over 40 and you’re in a car accident in which you break your leg badly enough to land you in traction, you’re not going to like what you see when the cast finally comes off. Or all that time you set aside for the gym and personal training may have to go to caring for an elderly parent, an ailing spouse, or a child who develops leukemia or some other nightmare of a problem.

It doesn’t even take a disaster. Sometimes it’s just getting older and the body you’ve worked so hard to take care of suddenly turns on you––the ungrateful bastard––and decides to blow up like a zeppelin. Bastard.

So what does any of this have to with the Chemo Dance Party, which is pretty damned silly?

Well, it’s not really meant to be an apologia/excuse for my Reubenesque proportions. It’s more to do with having cancer, one with a prognosis that more often not doesn’t end in smiles all round.

Chemo Dance Party is about living while you can––not just living but Living, with everything you’ve got. Chemo Dance Party is don’t wait to live. Don’t wait till your hair grows back; don’t wait till you lose weight; don’t wait till you get everything arranged the way you’d like it to be.

Don’t wait to live till it’s perfect. Live in such a way that makes life turn perfect. Don’t wait for the sun to shine––dance your heart out in the rain. (Hey, didn’t someone even write a song about how great it is to do that?)

Don’t wait to live. And don’t let anyone try to shame you out of it.

If I can’t have Chemo Dance Party, the terrorists win.

Sometimes Salvation, Sometimes Good News

I’m sitting in the cafe of the Macmillan Cancer Centre while Chris picks up a prescription for me back at UCLH, processing what I’ve just been told: halfway through chemo, a lot of my cancer has been killed off.

Processing isn’t usually my style. I didn’t process my original Diagnosis of Doom, I just heard it and went from there. But today calls for processing.

I have that song by the Black Crowes in my head, particularly the chorus which talks about leading horse to water but faith being another matter: “Sometimes salvation, in the eye of the storm.” I wrote a vampire story for Barbara Hambly once, called “Sometimes Salvation.” That’s different. Of course, you could think of cancer as a sort of vampire. But I digress.

Right after I was diagnosed, I told some friends: “There’s really only one privilege and it is: your life.” Perhaps there are some people who would disagree with me or think that’s easy for me to say because I’m white. But where there’s life, there’s hope––I know, it’s an old chestnut but don’t make the mistake of thinking it’s trite. 

When you get a Diagnosis of Doom, you can’t buy your way out of it, you can’t bribe your way out of it, you can’t get your friends to get together to throw it out on the street. Cancer is no respecter of colour, origin, sexual persuasion, or religious faith. If you could see the waiting area at the Macmillan clinic, you would see people who have all become the same colour, the same age, the same family. We all have the same expression on our faces: hope mixed with pain. And when one of us comes out of a doctor’s office smiling, we all smile back. We are together; we wish each other well.

Sometimes salvation, in the eye of the storm.