Pat Cadigan's Blog, page 13

Cyberpunk, Cancer, and Me

I’m trying not to think about how I had to miss this:

http://web-app.usc.edu/web/eo4/event/detail/909692?calendar_id=113

Henry Jenkins​ invited me to take part last year. When I accepted, I either didn’t have cancer or didn’t know it. The conference started right after my last day of chemo.

I wanted so much to take part, to talk about cyberpunk and the last 30+ years of culture, technology, science, and the street finding its own uses for things. I was there in the beginning, even before I actually knew I was there. It’s the course of my career, of my development as a person and as a writer. I went on writing exactly what I wanted to write, not because I was trying to be a cyberpunk but because the things associated with cyberpunk were the things I was most interested in.

Alfred Bester was a direct influence on Samuel Delany​; Samuel Delaney was a direct influence on William Gibson. I was influenced by all three, plus Cordwainer Smith and James Tiptree, Jr., among others. But cyberpunk didn’t happen until the personal computer finally arrived. Then the trilogy was complete: telephone, television, and home computer. They didn’t merge as quickly as I thought they would.

It took me a long time to be taken seriously as a writer, and to be seen as the writer I was trying to be––i.e., a hard science-fiction writer. A few years ago, Greg Benford turned to me in the course of a conversation and said, “Pat, you’re a hard science fiction writer…” I can’t remember the rest of the question, just Greg calling me a hard science fiction writer. I figure Greg would know the difference. So I got bonafides.

That’s what cyberpunk always was to me––hard science fiction, taken out of a wish-fulfilment setting where everything would be all right if we could just develop the right technology, and re-imagined in the real world, where things could go wrong and people could get hurt.

And so it goes. I should have been at USC talking about what was, what is, and maybe what’s coming, but things went wrong and I got cancer.

Actually, now that I’ve written it out, it’s kinda funny. I can see why our plans make God laugh. She’s got a wicked sense of humour. But then, I do, too.

So this is where I am. I can’t feel sorry for myself though because I am OMG ALIVE and if the science and technology work in my favour, there’s a chance I might stay that way past 2017. 

Anything can happen. Anything––but not everything. Nobody gets everything. But whatever you do get is something. Some people think that if they didn’t get what they wanted, they got nothing. That’s a bad mistake and they go on making it, thinking they’re getting nothing because it doesn’t look exactly like what they wanted.

But the truth is, you, me, all of us––we’ve got nothin’ coming. Nothin’, that is, except what we can make of our talents, ourselves, our lives. If that isn’t enough, nothing ever will be.

Okay, There Is One Thing You Should Never Say/Send To A Cancer Patient

And that’s one of those stupid “news” items about an all-natural cure for cancer that is being suppressed by the “medical establishment” so that unscrupulous doctors and drug companies can continue to make billions off the misery of cancer patients.

Folks, a juice fast won’t cure cancer. No, not even a soursop juice fast. Mega-doses of vitamin C/D/E/Q/XYZ won’t cure cancer. They won’t even give you a fighting chance against cancer if you have been diagnosed. Your only hope is chemotherapy and/or radiation as administered by medical professionals.

If fresh juice could cure cancer, doctors would be turning handsprings. Nurses would weep with joy. And more important, the big drug companies would already have their own branded formulations on the market. Until you see Pfizer Soursop Juice (fresh, not from concentrate) or Novartis Anti-Carcinoma All-Pure Fruit & Veg Drink or Bayer All-In-One Vitamin Cancer Treatment With Prescription-Strength Anti-Nausea (Plus Aspirin!) in pharmacies, go with science over super-foods and magic water.

(And while I’m at it, stuffing your face with antioxidant veg like broccoli won’t reduce your risk of cancer from cigarettes. The only way to do that is to quit smoking.)

I mention this not just because it’s my last round of chemotherapy but because Xeni Jardin of BoingBoing, herself a breast cancer survivor, has posted an article about Belle Gibson, who perpetrated an enormous fraud by falsely claiming she cured her own cancer with magic food. Belle Gibson never had cancer. Now Ms Gibson is apparently giving interviews about how being the extraordinary person she is caused her to tell lies.

http://boingboing.net/2015/04/22/wellness-guru-belle-gibson.html 

I don’t like to think about how many desperate people believed her. Yeah, yeah, they should have known better. But desperate people do desperate things–especially desperate people with cancer and no health insurance.

If you have a friend with cancer and you really care about that person, you won’t inflict one of those ridiculous “news” items detailing “The Cancer Cure Your Doctor Doesn’t Want You To Know About!” on them. There are far better ways to show your support.

If you have a friend with cancer who has already fallen for one of these frauds…I don’t know what to tell you. Try to encourage your friend to seek conventional medical treatment without seeming too judgmental. See above re desperate people.

And if you have been newly diagnosed and you’re wondering about all-natural cures because you’ve heard a lot of horror stories about chemo: the unknown is scary. I was jumpy as hell in the days before I had my first treatment because I really didn’t know what to expect. Would I vomit for hours? Would all my hair fall out at once–in public? Would I be too weak to get out of bed? Would it make everything taste like library paste?

Next to the anticipation, the reality was anti-climax. It wasn’t nearly as bad as I thought it might be and it still isn’t. Why? Because I’m freakin’ alive! Because most of the time, I’m not ill. Because life is sweet.

The drugs work. Take medicine, not promises.

End-Of-Chemo Anxiety

Naturally, reaching the end of a course of chemotherapy is supposed to be a happy thing, and it is. Now that you’re not getting poisoned every three weeks, you can look forward to all kinds of things, like eating salad, mingling with crowds, and your hair growing back.

But at the same time…

I’ve been doing this since early January. Chemo came in with the new year. Now we’re on British Summer Time (Daylight Savings Time, for my US homies). The weather is warm, leaves are coming out on the trees. It’s not exactly what you’d call the end of an era but my life––my routines, my activities––have revolved around chemo for most of the winter.

It’s not that I’m not glad it’s over. Believe me, I am. I want to go out, I want to eat salad, I want to go to the gym. I even want to go to the dentist (I broke a tooth).

But at the same time…

There’s a little anxiety that maybe six rounds aren’t enough. Maybe I need one or two more, just to make sure. Even though scans at the halfway mark showed enormous progress in killing off the malignant cells, maybe I should have just one or two more infusions, just to be on the safe side. Seeing as how I can’t take off and nuke it from orbit.

Not to mention I’m losing chemo brain and chemo fatigue. Now when I’m stupid and tired, I’ll have to find something else to blame it on.

My Consultant Was All Smiles Today

This is a doctor who does not smile lightly. She didn’t even smile to be polite when we first met because she had to give me bad news. Apparently I look and sound good and my bloods are good. 

I may actually live past 2017.

To be honest, I don’t feel like time is short. I don’t feel like I have cancer. Most of the time, I don’t even feel like I’m undergoing chemo. Sometimes I’m extremely debilitated but it always passes.

The hardest part will be getting myself moving again after chemo is over. But one of the best parts will be stuffing my face with salad. For six months, I might eat nothing but leaves, radishes, peppers, onions, cucumbers, and tomatoes sprinkled with crumbs of bleu cheese.

Chemo Is V-Shaped, Except When It Turns Into An Anvil And Flattens You

My friend Paul McAuley, who went through a much harder regimen than mine, considerately warned me that chemo is cumulative––the effects build up. In my case, as the effects build up, the cancer dies off. I got no complaints on that score. Go, chemo, go–die, cancer, die!

This cheer comes to you from the woman-shaped pancake under the anvil.

Certain side effects, less common and/or previously minimal, have intensified and asserted themselves. My ears have taken to ringing, usually when I’m in the loo. And lately, I’m in the loo a lot. In the past, I’ve been told once or twice that I was full of sh!t. In the past, I may have been; not any more. 

The metallic taste has returned––Hi, I’m back, didja miss me? Nope, sure didn’t.

I want to bounce around central London, stuff my face with sushi, and enjoy a leisurely bus ride home. If I could get up off the sofa and get dressed, I would. Even if I had to stop and puke on the way to the bus stop.

I actually wrote a piece of short fiction last month and I did it just in time; this month, it would take a hell of a lot longer to write half as much.

But this is not a list of complaints. Okay, it is, but I’m not really complaining. This is the shape I’m in right now. I wish I could do more to counter it but I just don’t have it in me right now.

At times like this, the best––only––thing you can do is let go and let anvil. (The original expression is ‘Let go and let God’, but I’m keeping it secular here; be glad we have these freedoms.) When you’ve been told you’re getting better, it’s disappointing not to feel that way. But this is just how things are now. Later will be different.

Admit It––

You really hope you have the kind of friends who would make you hats like mine.

Chemo Machine wanted to wear a hat today so I loaned it the Cross-Eyed Dragon. I think the two of us look pretty good together.

I’ve been under the weather but today, I feel better than I have in a couple of weeks. Chemo is usually a very good day for me. I’m pretty sure the hats are enhancing the good effects of the chemo while dampening down the less desirable side effects.

People ask me how I keep my spirits up. Seriously, with friends like mine, how could I not?

  

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.