First Reaction: Bad Flash Update.

So sorry for the bad flash, between one zillion things to do today, serious medication, and cancerland in general, I’m lucky I remember how to use a camera. Not a good effort, but it’s too damn cold to wander outside in my robe.

First Reaction, © C. Ford, all rights reserved.

First Reaction, © C. Ford, all rights reserved.

Upper left corner, WTF Duck and Face, bound and gagged. Middle left, the remnant of pre-cancerous me. Lower left corner, the Welcome to Cancerland Mesmerowlbat. Upper right corner, the Cell Slug, she’s a good one. Lower right, Face – anxiety, fear. All bound in a cell matrix. The cancer cells are the red-purple ones. Markers on Bristol, 16″ x 20″.

Cancer Chronicles 12: Creeping Isolation.

Paper, paper, paper.

I don’t know if I can explain this one. I’ll do my best. From the start, you’re inundated with information and a storm of paperwork at a very fast rate. If you’re someone like me, knowledge is good, it provides a foundation to anchor yourself on, but even then, you’re in a situation where this is all coming at a furious pace right after diagnosis. While a part of you is still struggling to process what this is going to mean, in terms of your life, your self, the rest is trying to take all this information on board. A good deal of it penetrates and makes it through, punctuated by periods of what my friend describes as bluuuuuuuur. Those punctuated periods are a very good reason to be sure you have someone with you who can act as advocate; another brain to absorb information, to scribble notes, record, whatever. Later, this acts as an excellent check: “Did they say…?” to get confirmation of what you think you heard. For myself and a lot of others, the shock has not yet set in, but when it does, it tends to fuck your memory up a tad. In the meantime, the information keeps flowing at a fast rate, every time you’re back in for a couple of weeks.

For me, there was the draining task of looking up every single cytotoxin I was going to be given. There were the pages and pages of side effects, finding out what the hell Urea Cream is and where to get it, in case of Hand-Foot Syndrome (Palmar-Plantar Erythrodysesthesia), and so on. (My thanks to my friend for all the info on the cream.) There’s a vast need to be prepared, JUST IN CASE looms large in Cancerland. While you find yourself preoccupied with all the intricacies and complexities of Cancerland, long before you realize it, there’s a whisper of a cocoon being woven about you. A cocoon of isolation. There’s a part of you which starts withdrawing immediately, but oh so quietly. Takes a while to realize the internal tug.

There’s a tremendous cost in emotional energy when it comes to cancer. The people who love you and care for you develop a low level desperation for normal times, a normal moment, the normal you. It’s impossible to not respond to that need, even when it costs you. Many of the people who surround you need to feel needed, and that includes most of your medical folk, and there are times it feels too much to even acknowledge them. Right now, my medical people regard me as knowledgeable, witty, and engaging. There is one hell of a cost to finding that person, forcibly fishing her out, and donning her for the benefit of others, especially when I feel so…lacking, in everything. That’s when you start finding it easier to simply sink inward, into isolation. You do feel very alone in treatment, because as much as people might love and care for you, they are not in your situation, and you don’t gain a true understanding of treatment unless you get to be in it. That’s even so when it comes to all the medical people who deal with cancer patients every day for years on end. Because of that, I think withdrawal into isolation becomes seductive because it seems to be a sort of armor, a protected place, away from everyone else’s needs; away from calculating the expense of answering the needs. There are times it’s very difficult indeed to ignore that siren song, and it always hits you when you are feeling at your most vulnerable, those moments when you think “I can not take anymore.”

This isolation also twines around the closest caregiver, and I cannot emphasise enough how important it is for people to be there for the primary caregiver. Caregivers tend to be forgotten as everyone clusters around the “cancer patient”, but a primary caregiver is also going through shock, and trying to figure out how to cope, and they have all the same information overload and everything else to do. To borrow from the advertising world for a moment, Have you hugged a caregiver today? Or given them a day of respite? Taken them out for a beer or a movie? If you really, really want to be nice to a patient or a caregiver, get a gift certificate for a massage.

ETA: In the comments, Nightjar had this to say about being a caregiver, and I can’t emphasise this enough, either:

Yes, and then there’s the goddamn guilt, which you know isn’t rational but it will creep up every now and then. “Am I doing enough?” “Is there something I could do that I’m not doing to maximize comfort and chances of treatment success?” This tends to get worse when well-intentioned people decide to give “advice”, usually to ask if you’ve been giving enough of miraculously-healthy-food-X or if you’ve been preventing the person with cancer from eating very-unhealthy-food-Y. I know intentions are good, but really, when you hear this kind of thing repeatedly what it begins to sound like is “you are not doing it right”. And you feel guilty because last night you were too tired to cook and just threw a pre-baked pizza in the oven. And it’s all very stupid anyway and it pisses me off because 1) Yes, I already know nutrition is important, my background is in biochemistry, even if it wasn’t, I would have heard it by now don’t you think? and 2) WTF, I’m not caring for a baby, my mom eats whatever she wants to eat and I’m not going to “prevent” her from anything. Seriously, people need to learn that just saying “I’m sorry, let me know if I can help you with anything” is fine and is enough. There really is no need to follow it up with anything if you don’t know what else to say.

Yeah, don’t do that kind of thing. Unless you’re a fellow caregiver who might be able to offer a really good and helpful suggestion, keep your ideas to yourself, please. We all know about pink positive crap, we all know about the diet this, diet that crap – it. does. not. help.  Also, in case you might not know, cancer treatment is bristling with nutritionists, that’s part of treatment too. Just as it’s important to remember the person with the cancer is still the same person, that applies to the caregiver, too. Resist turning people into “The Cancer Patient” and “The Caregiver”. Also, as someone who can be world class stubborn when I want to be, I’ll confirm that no, you won’t get anywhere trying to boss someone with cancer around when it comes to food. No one knows better than we do about that, and as I mentioned, there are times we plan to misbehave, and we’re willing to pay the price for it. You go eight months without your favourite food or treat. Don’t want to do that? Neither do we. Another word about diets: specific cancers call for specific diets, there’s no “one fits all”, which is why you have meetings with nutritionists for your particular cancer. If you’re a bystander to all this, trust me: you do not know best about diets. More than anything, a caregiver will appreciate respite, a nice gift, an offer of help, left right there.

I wish I knew how to adequately explain what it’s like to be able to talk with someone who is undergoing the same treatment you are, for the same type of cancer. Weirdly, it’s rejuvenating, because you can just talk. You don’t have to explain anything at all. It’s a different sort of normal; it feels amazingly normal because you can just talk, just as you would about any other thing. It’s Cancerland normal. Unfortunately, I imagine it’s a rare thing. My friend and I are damn neared twinned on every aspect of our cancers and treatment. Being able to talk with her has, to a great extent, kept me in the present, even when I’ve been feeling at my most exhausted and disheartened. I can’t not respond to her, because it’s simply too important to keep our metaphorical hands linked. She is the only one who knows.

This is not to say that all the other wonderful people in your life don’t do anything to help you normalise out, or lift your spirits in a myriad of ways, they do. Every pull out of isolation helps, every distraction helps, every serious discussion, and every silly discussion helps. Stories help. They all help to hoist you out of that internal spiral, because you do love every person back, and you do need them. Everyone who hangs out at Affinity does me good beyond measure; one of my greatest pleasures is how the conversations on the chronicles weave about, full of stories, expansion, humour, advice, suggestions, ideas, and compassion. Being there for someone with cancer is everything. Fucking everything. All that said, there are times when it feels like responding is going to be impossible to achieve, it’s simply a mountain much too high to climb, and you’re out of breath, energy, and the will to continue on. In the end, you do find yourself able to respond, and you slowly realize you feel better for it.

It’s not that we don’t know there’s an end in sight, but that end feels like ——————————————————->, too far out of sight to rely on in any way. The dreary routine of treatment gets to you. The fact that you just start to feel well again is right before you get infused again, that’s a piss and a half, to say the least. I’m right now starting to feel okay again, and chemo is today. Can’t be fuckin’ happy about that one. You have to develop new habits, fluid intake if you’re bad like me; everyone has to adjust their diet. These things truly help, but it can be hard to gauge how much, it often seems they aren’t helping a hell of a lot. The first time you misbehave, and you know we’re all gonna do it, you’ll have that message driven home, usually in the form of something you really don’t want to see, like ramped up diarrhea. I have officially decided that if I get addicted to anything, it’s gonna be fucking Immodium.  I literally cannot make a move without it. That’s dependence. :D

That’s all I have for everyone today, I’ll be back late, and probably have another collapse straight into bed when I finally reach home, so FUCK CANCER, KICK ITS ASS, and everyone? Take care of yourselves and everyone else. Take care of one another. And I can’t thank you enough for taking such amazing care of me, you all have my heart.

Books.

Marcus was thoughtful enough to send me The Emperor of All Maladies, which I had meant to get months ago, but with everything going on, it slipped the brain. I was barely into the book, tears in my eyes, thinking “yep, yep, yep” and identifying with so much. It’s a truly riveting narrative, and it’s what the very best books always are – an opportunity to learn.

One thing which really struck deeply home was when the author talked about how it’s difficult to think of cancer as a thing, it’s more on the person side, and that’s so true. I don’t think of my cancer as random cells happily cloning and evolving at the expense of the rest of me; I don’t think of it as a nebulous disease; I don’t think of it as a thing. It’s more like you separate, and there’s a shadowy self staring you down, a dark charcoal swipe of a doppelgänger, challenging you to wage war for your life, and cancer cells are much better at the whole evolution business than we are, which is why you get poisoned and radiated to what feels like an inch from death. All that said, and given the recent nightmare of treatment, I found myself profoundly grateful for the current stage of medical and technological advance when I read this:

The sixteenth-century surgeon Ambroise Paré described charring tumors with a soldering iron heated on coals, or chemically searing them with a paste of sulfuric acid. Even a small nick in the skin, treated thus, could quickly suppurate into a lethal infection. The tumors would often profusely bleed at the slightest provocation.

Lorenz Heister, and eighteenth-century German physician, once described a mastectomy in his clinic as if it were a sacrificial ritual: “Many females can stand the operation with the greatest courage and without hardly moaning at all. Others, however, make such a clamor that they may dishearten even the most undaunted surgeon and hinder the operation. To perform the operation, the surgeon should be steadfast and not allow himself to become discomforted by the cries of the patient.”

I’d dearly like to be able to go back in time and smack the fuck out of Heister, and a host of others. Misogyny seriously sucks, and boy, is it ever present in cancer treatment. It’s certainly lessened a great deal, but it’s still more than present. Sigh.

Anyroad, highly recommended, for everyone.

ETA: Feeling better, got my anger and FUCK ITs back. Yeah.

Cancer Chronicles 11: Home.

Let’s hear it for Sister Morphine.

The photo I couldn’t upload on Wednesday.

Home. When you show up for your labs/oncology visit/chemo, this is something you don’t want to hear: “Your labs are terrible! There is no way in hell you’re getting chemo today! You need to be in hospital.” :Considers running away again: “I’m going to stop meeting you like this if you keep putting me in hospital.”

Yes, I was very dehydrated, severe diarrhea for 12 days will do that, and I am not a good fluid intake person. The main trouble was that my liver enzymes were through the roof. Uh oh. My oncologist pinned his hopes on a possible bile duct stone, as I’m lacking a gallbladder. I doubted this was so; outside the constipation/diarrhea combination, I had no abdominal pain. Turns out this was so, a scan showed everything normal in that area. So, if this is chemo induced, I get kicked out of the trial, and switched to ‘traditional chemo’. I didn’t want to just do that, and neither did my oncologist, because there could be a couple of other factors: my obviously over the top reaction to the miralax, and the acetaminophen in my regular pain meds, which was quite increased from normal dosage due to very increased pain.

The GI doc and a couple of others who came to visit on Wednesday kept asking me about acetaminophen, specifically Tylenol, like I swallowed half a bottle every day for a hobby or something. So for now, I’m not taking anything acetaminophen based, gone over to morphine, my liver count was trending down very quickly, and the diarrhea has finally slowed down, so next week I’ll do chemo infusion two, just the same, stay off the acetaminophen for the following two weeks, then we’ll see what the labs say. Hopefully, I’ll be able to stay in the trial. I think I’ll probably win ‘exasperating patient’ of the year.

What is clear is that I’ll have to do all the stuff right from the start, low fiber diet, lots and lots and lots of fluid intake. My ostomy end is still not working, so I’ll need to see my surgeon again, too. I’ll admit to being somewhat afraid of the latter, because if I hear ‘hospital’ again in the next week or two, I might start screaming. I hate being in hospital, but I will say, for someone who hates it as much as I do, the nurses are always happy to see me, because I’m not the miserable asshole with them or any other medical folk. I always engage with them, and turn my humour to ‘extra high’, and I never ever have cause to complain about my treatment.

On Wednesday, I didn’t have my MRI scan until evening. Pick up arrived around 6 pm or so, and when I wandered out to the hall, there was a large man, dressed all in black, bristling with gear, looked like a cop, which took me aback a bit. The gurney was black, with enough straps to please a mad insane asylum director. I looked at him, looked at the gurney, and said “I wish I’d known, I would have put on my super villain outfit.” So, I got a ride in an ambulance to the MRI center. My first time in one, kind of interesting, and a nice break from hospital boredom. I was happily drugged for this scan, so I was able to lie still without much pain.

Odd things: my veins, which have never been what you call cooperative (I’m a roller), seemed to go on full strike on Wednesday. In the morning, getting my labs done, the needle goes in, nothing. The needle gets moved about quite a bit, nothing. Took about 20, 25 seconds for blood to show up. We had a good laugh about that, because it was really fucking weird. Later, in hospital, it was one blown vein after another. Much much later, talking with my oncologist, he was annoyed my port wasn’t used. So, I enquired about that (I had completely forgotten about the port myself.) One of my nurses told me they stopped using ports, because when they used them for everything, labs and IV, the rate of infections went up, and they got all the blame for it. Naturally, they weren’t happy about that, so they just quit using them. Can’t blame them, I wouldn’t want to blamed for that either, especially when every precaution possible is taken.

Thursday was one very long day, into evening, of sit, wait, and try to deal with deadly boredom. I wasn’t released until late evening, and I had to fight a bit for that, so by the time we got home, it was very late, and I swallowed some morphine and collapsed. Still not feeling great, but I’d much rather feel lousy at home. Jayne gets seriously unglued when I go missing, so I had to spend some time with him; he thought I smelled funny. The rats were all “oh Great Rat, serving wench, you are home! Feed us all the good things!” Grace and Vala just stared at me, then the empty tea dish, glaring at my compleat nerve at not being around to make sure they had their tea and pastry.

So, things should get back to normal here, for at least a while. One lesson learned: even on a routine visit, toss the packed duffel bag in the car, along with the secondary computer, cords, all that crap…just in case. Normally, I’d just toss it all in the car and leave it, but we’re still in below zero temps here. That can’t go away soon enough.

Cancer Chronicles 10: Standards & Stories.

Google Images, screenshot.

It wasn’t long ago I was moaning about the size of the chemo pump I get to be tethered to for two days per session. My friend who is also undergoing treatment told me their pump was more like an old Walkman, and electric rather than gravity fed, like mine. It’s also flat, rather than the silly giant capsule shape of mine. The above barely begins to cover all the different types, that’s not close to the whole page. Which leads me to wonder about standardisation, patient care, and patient outcomes. Whether or not you are paying attention to it, obviously everything about treatment has its effect on you, and user friendliness counts on some level, I’m sure. Of course, capitalism reigns supreme here in Ustates, and it’s quite apparent that there are plenty of chemo pumps all vying for attention and purchase. Obviously, more prestigious institutions with money behind them will have whatever is passing for the current state of the art and better design when it comes to patient point of view. Other institutions will have no choice but to go for cheaper options. And of course, there will be fingers, pockets, and the vagaries of salesmanship involved. Business is business, medical or not. What effect does this lack of standardisation have on patient outcomes, on the reputation of institutions? If I was given a choice, I would never choose the particular pump I’m saddled with. At the very least, I’d prefer something which could be carried at or below the waist. Oh yes, I’m sure they all get the job done, and the effect I’m talking about is certainly a small and subtle one, to be sure. Still, I can’t help wondering. Is this lack of a standard also prevalent elsewhere in the world?

ETA: I just didn’t have the energy to do this yesterday, but I talked about it in a correspondence with my friend in colon cancer treatment. Look at the people in that screenshot. Most of them with manic grins and poses, screaming “LOOK AT MY GOOD ATTITUDE! I HAVE POSITIVE!” Fuck that noise. I do not have a positive attitude. I don’t even have a good attitude. I have a shitty, cynical attitude, about most everything, and that certainly includes having cancer. If I lose that, I will be in serious trouble. My colon cancer friend is the same way. So, another little note: don’t go around telling a cancer patient something like “you have a positive attitude, and that’s the most important thing!” No, it’s not the most important thing. It’s not fucking important at all. What is important is whatever attitude your friend or loved one normally has is still intact and firing on all cylinders. If dark, twisted, gallows humour keeps someone going, don’t try to paint it pink with positivity. If razor sharp wit and observations keep someone going, allow that. It’s not up to anyone else to call the shots on what attitude will work best for any given person. As I said before, the person with cancer is still the person you know, they are still the same person they were before diagnosis; cancer is not a call to do a 360 on your personality and attitude.

I was putting off another chronicle for a while, which I’ll get to a bit later, but it turns out today is World Cancer Day. The whole thing is so damn Perky Positive that it exhausts me, but I will say this: If you’re putting off a standard screening, don’t. Grit your teeth, clear your schedule, and get it over with. It may well save your life. The people who love you will appreciate that. Yeah, it can be scary, no one wants bad news. No one wants that news. Nonetheless, Get. It. Done. If you’re stupid like me, and wait until pain shows up, it will be for  the worse. If you’re a younger person, and put off something like getting the HPV vaccine, stop that right now, and Get. It. Done. If you’re a parent, and you have not given this gift to your child, Get. It. Done. It’s much better to get that news when you have a good chance of survival. I’ve already known too many people who were dead inside six weeks of diagnosis.

Okay, stories. I was going to put this off until after the next session, but I felt compelled to write today because of the whole world cancer day thing. This involves chemo, having an ostomy, and rivers of shit. If you would rather avoid such shit, now’s the time to stop reading. My next chemo session is the 7th this month, the last two weeks have been a nasty hell spent in a river of shit. I’m exhausted, have next to no motivation to do anything at all, punctuated by bursts of explosive anger. It’s a kind of madness. I’ve had the interesting experience of having constipation and diarrhea at the same time. I don’t recommend it. Chemo turned the shit in my bowels to stone, it felt like I had a belly full of rocks. I waited a couple of days, to see if anything would move, nothing. Yeah, okay, so I take the recommended softener/laxative stuff. That was a fucking mistake. I turned into a skin bag of diarrhea, a spout stuck on ‘pour’. Thing was, this wasn’t coming out the ostomy end, oh no. My belly was still full of rocks, could feel them. This goes on for days. Now I’m taking stuff for diarrhea. Doesn’t work. I’m now on day 8 or 9 of leaking. It’s slowed down some now, and some of the rocks have exited the building, but not through the ostomy end. Feels like all I’ve been doing for over a week is cleaning shit: off myself, off the floor, off the toilet, out of clothes, out of underwear. The only thing happening there is Grimhild burping out farts on a regular basis, and Grimhild has a new trick of rapid shrinking down to flush with my skin, then popping back out again. I’m sure I’ll be having fun with my surgeon again this week. Obviously, stuffing my face like a victim of starvation after chemo is not going to be an option, because I cannot face another two weeks like the ones I’ve been through. Hello mostly liquid diet.

And then there’s the pain. Oh Sweet Crispy Christ, the pain. I have an abnormally high tolerance when it comes to pain, but even I have limits. Why in the fuckety fuck did no one arm me with pain meds before chemo? Why in the fuckety fuck am I going to have to bring this up? Suffering is not good for your nonexistent soul, it isn’t good at all. Out of my current doctors, only the radiation doc was familiar with the direct and referred pain caused by a colorectal tumour, and I’m wondering why. The pain has prevented me from sleeping, it’s woken me up from sleep. It overrides everything and leaves me wanting nothing more than to be unconscious. A low down (no pun intended, but…) colorectal tumour makes your tailbone a center of pain, it spreads out over and through the ilium, the lower spine, and puts amazing, blinding pressure on the sciatic nerve. It’s so gosh darn fun to get up and think you’re going to walk, and have a lightning strike of pain take your leg out from under you. That kind of pain momentarily shocks you out from under the dismal symphony of pain which has already become oppressively routine.

Sitting at my desk, staring off into middle distance, I become aware that I’m nodding along to the rhythm beat of pain in my lower spine rather than the music playing. Time for inadequate meds again. It’s a piss always having to be medicated, too.  Well fuck it, I have animals who would like to be fed, so I’ll go do that. For the record, rats totally win on the “oh gods, we are going to die right this second, pitifully, in your arms, if we aren’t fed immediately!” There’s nothing like walking in and seeing a group of boys standing up and reaching their little hands out like a chorus of Tiny Tims.

Tearful.

Tearful, in a good way. Voyager sent me a priceless gift, a beautiful piece of sea glass, from the 17th to 18th century. It comes from large glass barrels which were used to transport goods in the early days of shipping. It’s an unusual size and colour, and I’m astonished Voyager could give it up, but I am beyond thankful. Thankful is completely inadequate…I hold this ‘stone’ in my hand, this small tether to people and events of long ago, a piece of history, and it fills me with awe. Such a gift. I shall carry it with me, and use its power to transport me to another age when I need it, and I’ll be needing that a lot this year. Another thank you for the magnificent card too. You can read a bit about black sea glass here.

© C. Ford, all rights reserved.

There Just Isn’t Enough FUCK YOU.

Pastor Rich Vera of The Center for Revival and Healing in Orlando, Florida, has been mouthing off, much of it the usual “praise Trump” crap and “oh prosperity is a comin'”, but that wasn’t quite good enough, no. Let’s mention a couple of diseases, too, because that’s always good for getting the rubes attention, yeah?

Asked by Roth about his prophecy that the cures for breast cancer* and Alzheimer’s would soon be discovered, Vera asserted that Trump’s decision to move the embassy will be directly responsible for those discoveries.

“This is the most amazing thing,” Vera said. “What happened in Israel with President Trump proclaiming Jerusalem to be the eternal capital of the Jewish people, it is a significant thing in the spirit world because for him to be the man that spoke boldly to the nations of the world, he released a spirit that opened a portal for blessings to be released from Israel to the rest of the world.”

“When the president went—and I saw this in a vision—and proclaimed that on television,” he added, “there was literally a portal that opened up and it began to flush like a waterfall to America and we are about to experience prosperity like we have never experienced before.”

AAUUUUUGGGGGGHH, NO. NO, NO, NO.  Today, I was reading a post of Jen Gunter’s, about her attendance at a goop conference. The rapacious predators were loose there, too. I already have a good amount of anger over having cancer, and treatment, and the way people are, and so much fucking more, but today? Oh, the word anger is not sufficient. Not even fucking close. This shit is unconscionable, telling people that “hey, god’s gonna show with that cure, just hold on and pray now” or “ooh, love cures cancer!” Fuck every godsdamn fucking one of you nasty assholes who says or preaches such utter shit. Treatment for any disease is not fun; turning people away from it? How much more depraved could you get? Getting a kick out of stuffing your pockets as you play Death and prey on vulnerable people. Not enough fuck you. Not enough fuck off.

Of course, the two diseases singled out by Vera are common, and come pre-laced with a great deal of fear and horror, but that’s christianity all over for you, preaching fear, it’s the basis of their whole twisted religion. Fear, fear, fear. Bow down in fear, and Jehovah might cure you. Maybe. Probably not, but ya know…Of course, when you die, the preaching will be about “god’s” will and calling you home or whatthefuckever.

This sort of shit makes me beyond furious, all those who think it’s okely dokely to further burden people who already carry a massive burden on their shoulders; to blame people for having a fucking disease; to pick their pocket while telling them to have faith in whatever: god, nature, Goture, supplements, love, prayer, whatthefuckever. If you’re one of those hideous, evil people, shut your fucking mouth, and go sit in the damn corner. You’re a dealer in death, a carrion crow who can’t wait to start pecking eyes out. (No insult towards crows, they perform valuable services, unlike Vera or Goopers.) You deserve hate and loathing from every person on this damn planet, and if there were a god, I’d be cursing you with every bloody breath.

The whole thing is at RWW.

*And for those who don’t know, even breast cancer is not one specific cancer. Cancer is crazy complex, and it’s hundreds of diseases under one heading. If you want to help yourself or someone you know with cancer, get information from reputable, evidence based sources.

Cancer Chronicles 9: Anger.

hd-free images.

Okay, I need to start with a disclaimer here. These cancer posts are to be able to inform, demystify, and for people to be able to talk about cancer, something which is still remarkably difficult to do. There is not one person who has taken part in these conversations who has said anything wrong at all; and I am grateful beyond measure for all the wishes and encouragement, which is appreciated beyond my ability to express it. So, I am not talking about anyone here at all, or in a specific sense. Most people who end up hearing “you have cancer” are going to end up angry at some point, and that anger will lash out, often in some unexpected directions. In my very short experience, I try to shelter those who care for me from it, but I am not always successful. While you realize it’s on the futile side to be angry with a random disease, it doesn’t stop the anger, and there’s plenty of actual things to be angry about.

Today marks my 36th day in from diagnosis. I have a minimum of eight months of treatment left, with at least two more surgeries awaiting. I really did not want the anger to come on so damn fast, because this ride is going to get much worse. But it’s there, itching under your skin from the start. People’s attitudes towards you change immediately. Some people ignore you; others treat you like a cracked porcelain doll; some people crumple; some people run from potential contagion of bad luck; some people immediately start whispering, which is weird as fuck; some people set themselves up as your hero; And the most dreaded: the leering clown faces wearing a rictus of positivity, stalking the halls like a latter day Death, wielding a smiley face instead of a scythe. In 36 days, I have already said not dead yet way too many times. How many times will it be by the end of this year? The only time it’s okay to talk about someone like they are dead is when they are actually dead, and well beyond caring about anything one might say.

On Monday, in the oncologist’s office, while waiting, bored, and standing because Butt Pain, I started poking about in cupboards. (Everyone does that, and the worst ones for snooping are medical people who find themselves in the patient seat.) Upon opening the cupboards over the sink, I let loose an exclamation, along with “I know what those are!” The infamous breast cancer swag bags, filled with pink. I read about these in Bright-sided: How Positive Thinking Is Undermining America by Barbara Ehrenreich. Welcome to Cancerland. At least with colon cancer, you get to avoid the aggressive, cheerful, infantile pink positivity which comes with breast cancer. Colon cancer is more low key, but you still find yourself stalked by the bad science of positive thinking. The pervasiveness of must have a good attitude and victim blaming is about as toxic as chemotherapy.  I recently noticed, with dismay, that a couple of my chronicles were liked and picked up from my personal blog, and was highly unhappy with seeing these blogs writing about ‘being cancer preventative’, which is probably the most insidious method of blaming people for getting cancer. That is something to be absolutely fucking furious about. If you’re one of those people writing that kind of crap, telling people it’s on them to live a cancer preventative life, stop that godsdamn shit right fucking now. You are being a toxic, traumatic, obnoxious asshole, and you sure as hell are not helping anyone. Why? Because shit happens, that’s why. You can be a bloody saint and get cancer. Tiny children get cancer. People who exercise, eat right, don’t drink, and don’t smoke? Yeah, they get cancer too. The older you get, the more likely you’ll get cancer. So fuck you if you’re doing this brand of victim blaming. It’s random, it happens. As Charly notes in the comments, yes, you can certainly do things which may increase the possibility of certain cancers, but you cannot do one damn thing to prevent it.

Treatment. The one moment I emotionally embraced my oncologist was when he went on for a bit about how just barbaric cancer treatment is – he reminded me of DeForest Kelley playing Bones, stuck in a 20th century hospital, aghast at the barbarism of treatments. That was a good moment, because truth matters, and the truth is that cancer treatment sucks. In my head, I see myself chained, from the left and the right, being torn apart by two malign forces: cancer, treatment. It’s not easy to give people tacit permission to poison you and bombard you with radiation. Smart Monkey says: fuck, bad, run away! After you’ve beaten Smart Monkey into submission, you learn what my fellow traveler in colon cancer learned: all treatment is TRAUMA. It pings all the trauma: physical, mental, emotional. And you’re surrounded by people who truly want to do the right thing, and truly wish to help, but they don’t know what to do or say because no one ever fucking talks about cancer or treatment. It’s all hushed whispers in hallowed halls, with a chorus of puking and silenced rage behind it.

People. Oh, people. You’ll see and get the best and the worst, and everything in between. I know it’s difficult, but if you end up being the loved one of someone with cancer, treat them like you always do – yeah, circumstances have changed, but the person you care about is still the same person, and everyday normality and sanity can be hard to come by, so it becomes that precious to you.  You can certainly offer to help with this, that, and the other, but if they say ‘no, got it’, let it go. We can’t just retire to the corner and wither, and we don’t need people encouraging that. Please, please, please, don’t keep repeating how great cancer treatments are now. They aren’t, and we know all that shit already. Everyone. Knows. That. Please don’t decide to treat us like dim 5 year olds. Rick has already picked up this habit of asking me “can I carry anything out to the car for you?”, as if I’ve decided to move house or something. All I ever have is my bag full of art supplies and paperwork, and I can still handle it. When you are in treatment, you have to remember and remind yourself to allow those who are caring for you to express such things, and to allow them to care for you. That can be very difficult, especially at the beginning, before you start feeling so diminished. It can be very difficult after you start feeling diminished too, because there’s going to be a fucktonne of resentment that you feel so fragile, ill, and diminished, and there you are angry again. As for all you friends and loved ones, please, please, please remember that this is a person you know well, your friend, your loved one, not cancer patient number whatever. You need to think of us as us. And whatever else, please leave the positivity crap behind, unless that’s something your friend or loved one is into. As for myself, I think the leap concluding that positivity is the opposite of stress is a very stupid leap. Stress is not helped by Perky Pollyanaism. As Barbara Ehrenreich writes in Brightsided:

But rather than providing emotional sustenance, the sugar-coating of cancer can exact a dreadful cost. First, it requires the denial of understandable feelings of anger and fear, all of which must be buried under a cosmetic layer of cheer. This is a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, but it is not so easy on the afflicted. Two researchers on benefit-finding report that the breast cancer patients they have worked with “have mentioned repeatedly that they view even well-intentioned efforts to encourage benefit-finding as insensitive and inept. They are almost always interpreted as an unwelcome attempt to minimize the unique burdens and challenges that need to be overcome. One 2004 study even found, in complete contradiction to the tenets of positive thinking, that women who perceive more benefits from their cancer “tend to face a poorer quality of life – including worse mental functioning – compared with women who do not perceive benefits from their diagnoses.”

Medical staff. Oh man. Well, you get all kinds. Me, I love the smart asses. I can’t even begin to say just how much honesty matters. Unless you have a specific reason to do so, don’t treat all your patients like they are somewhat stupid toddlers. We are all individuals, with different reactions and actions. It doesn’t take much time to assess whether or not a particular patient is well up on knowledge or not; whether someone is a bit quicker on the uptake or not, and so on. The condescending pat on the head treatment doesn’t do anyone favours. We aren’t dogs, waiting to wag our tales at you for a job well done. Please, I beg of you, if you work with cancer patients, don’t pretend you know what treatment is like unless you’ve undergone it yourself. That’s much more likely to make a person very angry, and find yourself wanting to shove a chemo pump up their arse, nostril, or other convenient orifice. Humour is great, and often helpful, but there are times when you’ll be able to tell, right away, when someone is just too damn exhausted for a sense a humour. Let us take a nap instead.

For all people dealing with a cancer patient: when it comes to anger, fear, anxiety, or all three: let us complain. Let us yell. Let us throw some shit at the wall. Whatever. Please, don’t try to talk us out of our anger, fear, or anxiety. It has to be dealt with, and trying to ‘cheer’ us out of it, or refusing to acknowledge it, or our right to both the feeling and the expression, that doesn’t help. You don’t have to fix it. You don’t have to make it better. You can help by allowing, by listening, by commiseration, or even yelling along. On the caregiver’s side, it’s not easy listening to such a litany, over and over, any easier than it is listening to your loved one puking their guts out, or crying quietly, or pushing food away. Being a caregiver sucks, too. All you caregivers, you need a caregiver yourself, or at least someone who can provide you with respite now and then. Don’t be afraid or ashamed of needing that, or simply taking time to be yourself for a while, with no demands on you. No one’s going to give you a reward for being a fucking martyr, and the person in your life with cancer doesn’t want that. It’s quite alright for you caregivers to get angry as hell too, and fearful, and anxious. Cancer isn’t fun for anyone. Patient or caregiver, if you think counseling or therapy is a good thing for you, go for it. If you don’t, then don’t. If someone is not interested in therapy or counseling, don’t push it. We know what will and won’t help us.

I’ll probably think of more stuff later. Right now, gotta go give some love and food to my animals, and they are grand. They don’t care if you have cancer, they still love you, and embrace you, and treat you like the household god of food and doors you have always been.

Cancer Chronicles 8: One one thousand, Two one thousand…

Got to disengage the giant capsule today, yay! Wow, that goes a long way towards feeling normal again. That chemo pump has a terrible weight to it, which has nothing to do with the physicality of it. Okay, this chronicle is mostly pictorial. I’ll caption what’s going on.

Okay. Once the pump is empty, first step is to switch the line to 'off' - you just slide the tube from the open flow notch to the pinch end. Easy peasy.

Okay. Once the pump is empty, first step is to switch the line to ‘off’ – you just slide the tube from the open flow notch to the pinch end. Easy peasy.

Next, get your bag of goodies out and ready. You'll have alcohol wipes, gloves, two loaded syringes for flushing, and a bandage.

Next, get your bag of goodies out and ready. You’ll have alcohol wipes, gloves, two loaded syringes for flushing, and a bandage.

Even if you don't think you need to do this, go over your instructions once before you begin, because you really don't need to fuck something up, and end up with an unnecessary trip back to hospital, yeah? After a few times, it will become old hat.

Even if you don’t think you need to do this, go over your instructions once before you begin, because you really don’t need to fuck something up, and end up with an unnecessary trip back to hospital, yeah? After a few times, it will become old hat.

The gloves, they won't fit, guaranteed. Pain in the ass. You're instructed to clean the port connector for 15 seconds, for each syringe, so count: one, one thousand...

The gloves, they won’t fit, guaranteed. Pain in the ass. You’re instructed to clean the port connector for 15 seconds, for each syringe, so count: one, one thousand…

Free! Woohoo.

Free! Woohoo.

Now that you're happily unencumbered again, gather up all the stuff.

Now that you’re happily unencumbered again, gather up all the stuff.

Put all the stuff in the transport bag, and stick it somewhere you won't forget, because you have to take it back with you for the next infusion, where it's happily catalogued as properly destroyed and all that.

Put all the stuff in the transport bag, and stick it somewhere you won’t forget, because you have to take it back with you for the next infusion, where it’s happily catalogued as properly destroyed and all that.

Now for more tea and something to eat so I can take my dexamethasone. Oh man, it is so nice to have that thing off me. Your port area and shoulder will be a bit sore, treat that part of yourself gently.