Ringing, Ringing, Ringing…

I’m glad I belong to the Macmillan Cancer online support group. I knew what I was experiencing were the cumulative side effects of six rounds of chemo but it was nice to read messages from other people who went through the same thing.

My most pronounced side effect right now has to do with changing position. Standing up is an adventure––my ears begin to ring. When I start to walk, the ringing gets louder and my balance becomes uncertain. It’s not true dizziness––more like I’m on the threshold of being dizzy. I’m about to be dizzy. Then the ringing drowns everything out. Sounds are far away, with a tanky quality, as if I’m in a large metal container, or maybe how things sound if you were all by yourself in an Olympic-sized swimming pool.

If it’s intense enough, I sit down on the stairs. I never feel like I’m going to fall down exactly but I don’t feel secure standing up, even though my body says it’s quite stable. I can’t sit there for long, however; I got up because I had to, and I have to keep going. Getting up again makes my ears ring even louder.

Then the hissing starts, like water running or gas escaping; always in my right ear. The hissing means the episode is about to start winding down and I just have to wait. At this point in a typical day, I am usually in the loo and Gentleman Jynx, coolest black cat in London, is sitting in front of me with an alert expression on his cool kitty face.

Business taken care of, I head back to the living room, which sets off my ears again. I make my way to the living room with the Gent in the lead. I pause in the doorway of the living room to steady myself before going the last few feet to the sofa and collapsing. Once the Gent is sure I’m settled, he’ll climb onto my lap, either to resume resting on his special lap pillow or he’ll move over to his favourite non-lap pillow near my feet.

There is no exercise with free weights right now––squats would probably make my inner ear explode. All the little inner-ear hairs are gone so my proprioception is off. At least, I think it’s my proprioception. 

The sensation that comes with the ears ringing is so weird. If you can imagine the intensity of a long drop on a roller coaster, but without the sensation of falling––only the intensity of it.

But it’s all good. I’m impatient to bounce back, to get active again but I can deal. It’s not nausea; it’s not painful. At worst, it’s inconvenient, and that won’t kill me. 

Advertisements

Wigs Vs. Scarves

The scarves are winning.

I know, I promised some serious wig action after I lost my hair. “Cancer Made Me Flip My Wig!” was suggested by the lovely and talented Ro Nagey as the title of a book of photographs in which I try on every hairstyle in the world.

Well, I haven’t gotten around to that yet but I finally managed to meet with the lady who fits wigs for Macmillan and I learned something important: I don’t look good in most wigs.

It’s not because when I put one on, the illusion of eyebrows is completely lost and it becomes plain that I don’t have any. It’s because they just aren’t making wigs that look good on me. When I put on a wig, the wig begins screaming, HEY, LOOK––I’M A WIG! I’M A WIG, I’M TOTALLY A WIG! I COULDN’T BE ANY MORE OF A WIG IF YOU PAID ME!

And I immediately take it off again.

I’m so disappointed. I wore my hair extensions with pride and panache. They were fun. There were a limited number of things I could do with them but that was fine with me. Wigs and hair extensions, however, are very different animals. They hang differently from the head. Personally, I’m not sure there’s a wig made for my head.

Scarves, on the other hand, can be arty and flamboyant, colourful, cheerful, pretty. Yes, it’s true that scarves generally say, BALD FROM CHEMOTHERAPY. 

But in truth, I mind that a lot less than I’M A WIG! STARE AT ME WHILE YOU WONDER WHY ON EARTH THIS WOMAN THOUGHT SHE LOOKED GOOD LIKE THIS!

Wouldn’t you?

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.