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.

Still Making God Laugh

Woke up this morning––Ha! In your face again, mortality!––only to realise I didn’t feel well at all. Took my temperature: 38.4ºC. Not good. When you see that as a chemo patient, you get dressed and go to A&E, stat. So Chris and I took a cab to UCLH, where they hooked me up to some intravenous antibiotics. Fever came right down but they’re keeping me overnight anyway, even though the fever is most definitely gone. I think maybe I caught a cold or something.

Nonetheless, I’m going to be all right. I’ll be taking it easy for the next week, and I’m not sure I’m on schedule for chemo this week––they’ll tell me tomorrow, I guess.

But it’s okay because I hit a milestone anyway: I finished a piece of short fiction last week in about five days. I had to beg off from a few anthologies simply because I didn’t have enough energy to do the research those stories demanded. This one required no research. It’s called “Cancer Dancer” and I’ve cut pretty close to the bone by making use of my own situation. It was also a bit cathartic; I got to use bad language. Today, I got word that the editor in question likes it and he’ll be taking it.

It’s reassuring to know that yes, I can still do what I want to do. Maybe everybody else knew that but sometimes you need empirical proof.

Also, if I can’t profit from my own damned cancer, the terrorists win.

The Exercise Thing

It’s a real problem, exercise. If you thought it was hard to get motivated to get off the sofa under normal circumstances, chemo makes it Mission Impossible.

Never mind that you know exercise will probably help chemo work better. Maybe you’re like me and you’ve been physically active one way or another all your life and you know those endorphins are just what you need. Just thinking about getting up and moving around makes you breathless, Hell, merely putting on your clothes has you panting like 15 minutes of brisk walking at 6 mph, which you can’t do. You can’t even amble for 15 minutes. 

Maybe like me, you’ve been wanting a recumbent exercise bike so you can get those back muscles into shape in front of the TV but the expense is beyond you right now. Everyone has told you yoga is just the thing, especially hot yoga, which releases endorphins like nothing else. But you’d have to leave the house for that, which means wearing yourself out getting dressed. And if you spend money on a yoga class, you’re dipping into your recumbent exercise bike fund. Why is life is so freakin’ hard?

I bought myself 3 sets of dumbbells––2 kg, 3 kg, 4 kg. You need next to no room to use dumbbells. You can even use them sitting down. I have this book by Rosemary Conley which is full of exercises with dumbbells. I’ve misplaced the book but I remember my favourite pyramiding sequence.

Pyramiding, for those who don’t know, is doing the same set of exercises with progressively heavier weights: 12 reps with 2 kg, 10 reps with 3 kg, 8 reps with 4 kg. I encourage everyone, even you healthy folks, to look up Rosemary Conley’s workout books. Rosemary is an older woman who has the body of a 25-year-old and does not show off––i.e., you will be able to do all the exercises, (or you will be able to work your way up to them). There’s no super-bendy stuff that only the double-jointed can achieve and if you follow her instructions for progression, you won’t hurt yourself. 

And no, I have no connection to Rosemary Conley. I will not profit if you buy her books.

Now, lifting weights is not aerobic exercise like walking––i.e., technically. I maintain that any exercise is aerobic for as long as you do it. So, for example, sixty seconds of squats is the aerobic equivalent of sixty seconds of walking, even if you do the squats slowly. In fact, you’re better off doing them slowly instead of popping up and down swinging your arms. I use the weights: when I squat, I lift my arms in front to shoulder level, and lower them as I straighten up again. You can do that with or without weights. Doing squats or lunges first is best, as you are exercising the biggest muscles in the body. According to my favourite aerobics instructor, you’re better off moving from the largest muscles to the smallest. (This is the same aerobics instructor who took me out drinking in Chicago one weekend and caused me to experience my first––and hopefully last––hangover the next day. She’s also the reason I’m unafraid of karaoke, but I digress.)

Starting with the lower body is especially wise for women because that’s where our body strength is concentrated, while men’s strength is above the waist. Men can punch like a kangaroo, we can kick like a mule; it’s a child-bearing thing.

Anyway, your heart-rate will increase more when you raise your arms so don’t wear yourself out too soon. Warm up with squats and lunges. If you have knee problems, or if your knees hurt when you do the standard lunge, don’t lunge forward. Step back instead and dip, keeping your posture straight so you go straight down and straight up again.

And whether squatting or lunging, be sure to keep your knees directly over your toes––don’t bend your legs so that your knees go forward or you really will have knee trouble. Squatting should be a movement as if you are about to sit down in a chair without looking behind you––you stick your butt out. It feels like it looks funny and it does, so if someone in your house makes fun of you, smack ’em with a wet towel and tell them that’s from me.

Anyway, after you’ve warmed up with squats and lunges, which don’t need much space, move on to upper body exercises with the dumbbells, which need even less space. (Yes, you can use soup cans or bottles of water but you’re better off tightening your belt, biting the bullet, and buying yourself some dumbbells in cheerful colours––you’re more likely to continue doing the exercises and you won’t get caught short if someone else in the house gets hungry or thirsty.)

I’m not going to go into a list of exercises here––you can either get the Conley books or you can find plenty of exercises online for free. I like the Conley exercises because after two weeks, my arms have been transformed from loose flesh hanging on pipe-cleaners to toned and muscled limbs that I want to show off by going sleeveless everywhere, even in winter. The arms are the most easily toned area of the body; seeing what you can accomplish in a mere fourteen days (give or take; one size does not fit all and ymmv) can motivate you to keep going with your exercise.

The advantage here is that you don’t have to get dressed and leave the house; you can watch TV or listen to music or audio books. So if you’re allergic to the gym, this is a doable alternative.

Me, I actually like the gym. My only problem is, there are seldom enough free weights/dumbbells to go around and someone always runs off with just the set I need––or worse, half of the set I need––just when I need it. The gym also costs money and you have to factor in the time it takes to travel to and from––and if you’re having chemo, you might use up all your energy just travelling to the gym. 

And then there’s the matter of being immune-compromised––gyms are germ farms, as are shower rooms. If you do visit the gym, you should stay out of the steam room and the chlorine-flavoured soup that is the swimming pool.

But I still like the gym. I always go at the least-crowded times, so if i need help with a machine or if I have a question, there’s always an employee free to help me out. People with honest jobs don’t usually have this option, which is another good reason to keep a set of dumbbells in the house.

I also like exercises classes. I like moving in unison with a group; it’s very social and most of the people are really nice. But I’m not feeling up to that sort of thing right now. I think once I finish chemo, I’ll try hot yoga at one of the Fierce Grace studios in London, which are the easiest for me to get to, and I’ll try out the various machines at our local leisure centre, which is closer but slightly less convenient for public transportation.

If you have never been terribly physical because you’re self-conscious or because you were always picked last for mandatory school sports or whatever, take back your birthright––joyful movement for its own sake. Start small, with dumbbells at home, where there is no one to feel self-conscious in front of. It’s true about the endorphins––you’ll really feel better psychologically.

Many of us were robbed of the enjoyment of sports and/or dancing because we didn’t do it well. The thing is, the point is not to do it well but to do it. Your body needs it; your brain needs it. You deserve to think of dancing and/or playing sports as fun, because these things are fun and they make you feel good. And in case you didn’t know, you deserve to feel good.

Okay. Arise, go forth, and conquer. 

Or just stand up. That’s a good start.