Fight. This was actually the first cancer piece I started, but it wasn’t time yet. Now it’s time. Markers and pencil on Bristol, 19″ x 24″. Click for full size.
© C. Ford, all rights reserved.
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Open Thread. Don’t be an asshole. Thanks. Previous Thread.
I’ll start with FUCK. THAT. NOISE. ^ because it’s easier than the intimate stuff. This…thing is on the wall of the exit hall leading out of all the oncology exam rooms. I hate to say, but this is far from the worst. The whole place is soaked in crap like this, and worse, deep catholic sentiments (quotes from motherfucking “saint” Theresa* and the like), and the rest is all “brave! hope! courage! faith! positivepositivepositive!. It’s enough to make a person puke and not stop. So, “Be Brave” with a cutesy arrow. Obviously, no one thought that one over very much. Implicit bigotry is always there, and obviously the, er, person who did this didn’t think at all. I could never in my life call the person who did this utter piece of shite an artist. Ugly, tacky, racist. It should be burnt, along with all the rest of such crap.
What does such an admonition do for someone who is almost catatonic with fear? How in the fuckety fuck does such a thing help that person? It doesn’t. It’s yet another scalding burden to place on the shoulders of that person, that something is terribly wrong with them; that they should not feel fear, no. They should square those shoulders, jut that stiff upper lip, be brave. Fear and anxiety are perfectly fucking normal when you get to hear It’s CANCER. Each person is different, and even those who manage to take the news with equanimity do not need to see such shit. We do not need to be told we should be “brave! hope! courage! faith! positivepositivepositive!. We should not have to confront such crap at every turn. Sure, there are people who might love seeing fucking Theresa quotes, but you know what? You can get such shit at home and your place of worship, if that’s your thing. And once again, those of us who are godless are not even considered when all this littering of religious crap is being done. People of other religious beliefs are not considered either, no, it’s all christian crap. The people responsible for picking this absolute shit out need to be taken out behind the woodshed and given one hell of a good smack.
ETA: To all the offended Christians: this notion that christian sentiment is somehow universal shows a breathtaking arrogance and an appalling lack of thought when it comes to other people. My cancer is not about your god, and no, I don’t give one tiny shit what you think about it. Anything me is not about your god. Please, keep that nasty god to yourself. You can drape yourself in instruments of execution, rosaries, prayer books, all that, but try to get it through your heads that it’s personal, and it does not apply to all people.
There is so little thought when it comes to cancer decor, and yeah, that’s a fucking thing. There’s zero honesty in any of it, it’s just “open your mouth and swallow the bullshit, honey, and if you aren’t brave and hopeful and full of faith, well that’s on you. YOUR FAULT.” There is no recognition of all the actual emotions threatening to boil over. No anguished “why”. No fear. No anxiety. No head full of thoughts and questions about how you will manage anything. No anger. No FUCK. No spectre of death. The other side of cancer decor is all obsequious gratitude, generally in the form of survivor art. There’s one of those pieces hanging in the oncology waiting room. No, there’s nothing wrong with being thankful and happy you made it out the other side with your life, but this kind of crafty art is terribly grating, because it evokes people on their knees (in this case women, a group of breast cancer survivors) giving worship. Fuck that noise too. Medical are doing their jobs, it’s what they do, and I’m pretty sure they’re thankful for every patient who survives, but you don’t find them doing worshipful art pieces. There’s a terrible imbalance in Cancerland. People end up feeling like it was the bad old days, where doctors were gods, and you didn’t dare make a sound, but meekly went toward any treatment you were pointed at, and no matter what happened, you should be on your knees in gratitude. Cancer has a way of smacking you the fuck down, and until the anger shows up, you don’t feel terribly strong. Or fucking brave. For some people, the fear will dominate, which tends to keep them quiet, even when they shouldn’t be. You can recognise them, like sheep being led to slaughter, meekly plodding along. All the “brave! hope! courage! faith! positivepositivepositive! crap doesn’t do anything for them.
So here’s a thought. Take all the “brave! hope! courage! faith! positivepositivepositive! crap, pile it up, and burn it. Instead, get warm, colourful posters and photographs. Flowers, water, dance, play, beautiful things which provide slender threads to good memories, to future hopes, threads which keep a person linked to thoughts of life. Things which represent to ALL people. No false cheer. No fucking admonitions. No hint of anything being your patients’ fault. Warmth, colour, life. Let people make their own associations, the ones which are most important to them. Cancer decor, as it now stands, needs to die, stat. It’s probably helping to kill a certain percentage of patients. Trite bullshit doesn’t help anyone. Stupid clichés that you’ve heard a million times don’t help. If you’re setting up an office somewhere, be original and actually think about your patients, think about how much this twee garbage does not help. Think about what might make you feel better if you were in the cancer seat. From now on, I might have to make sure I don’t have a lighter on me when I have to go to oncology. The temptation to set all that shit on fire is near overwhelming.
Okay, on to breakdown days. They will happen. Might not happen often, might not happen more than once, but one of them has your name on it, and will hit with the force of a sledgehammer. Mine was a couple of weeks ago, when treatment had been pushed back for the third time. I found myself crying. In public. For me, that’s unthinkable and it was mortifying. I couldn’t stop, and I wanted to start screaming all of my fury, too. The whole mess didn’t last long, even though it felt that way. I was back to my normal cynical humour, but that breakdown left a deep and lasting mark. It’s one which won’t go away. It took too long for the penny to drop, but I finally realised that if anything pushes me off the mental cliff, it will be Go sit in the corner and waitwaitwaitwait. I don’t have any way of coping with that one. I just want this DONE. It’s the one thing you think about, being done. Over. Out. I found myself in the position of getting in the door, but I couldn’t even see down the fucking hall, let alone the exit door. I’m not one who sees any virtue whatsoever in patience. I can be remarkably patient when there’s a clear end goal in sight, and there’s a specific time limit. But vague, hand-waved waiting? No. What will get me through is having treatments on time, on schedule. And yes, I am all too aware that people are looking out for me, making sure I don’t get even sicker and have yet more to deal with. Yes, I am all too aware that chronic liver inflammation is a precursor to cancer. I also know that chemo increases the chance of another cancer down the road. I know all that shit. Doesn’t help. There’s already a small well of despair in my head, trying to prepare me for another four fucking weeks of waiting instead of the next cycle. One thing is sure, if that happens, I’ll be sure to be ensconced in the car if another breakdown day comes my way, so as to at least preserve a bit of dignity. A sense of dignity can be hard to come by in Cancerland. Whew, I did not want to share any of that, but honesty seriously counts in Cancerland, and it has to take priority. That’s all I have for this chronicle.
*All the people Theresa “ministered” to were put on filthy cots on dirt floors, and denied pain medication, although it was available. Terminal people in immense pain were told “suffering brings you closer to god.” Yet, when Theresa was ill, she was put on a jet, flown to the U.S., put in a private room with all the amenities, which would be way out of reach for most people, and you can bet she was given more than adequate pain meds. She deserves zero respect, she was an immoral hypocrite.
Finally got a couple shots of the Infusion Center with my ancient coolpix. First is the station across from me, I waited until that person was done and had left. It’s like this all the way down, both sides. The nurses’s station is to the side of this chair. Second photo is my chair, got a bit of work done, and took this while I was still hooked up, but close to done. Click for full size. The worst effect of this cycle so far? My tea now tastes like a combination of soap & vomit. This might be a world ending event.
© C. Ford, all rights reserved.
So, I’m supposed to have my second infusion today. I’ve been pushed back so far, I’m back to the beginning again, so it’s eight cycles, not seven. The “I hope” is because I have to be in same day surgery first, to have Grimhild irrigated, and I got a feeling…well, if I am imprisoned again, I’ll be prepared. I’ll have my artwork, packed duffel, Hekate (spare computer), and I found and dusted off one of my little stealth cameras, my coolpix, um, I think it might be an S1 or summat. So, hopefully I’ll have everything I need…Just In Case.
Anyroad, I won’t be around all day, because I probably won’t get out of chemo until around 4pm, and if it’s possible, and if I don’t feel like death, we’re gonna Black Panther!
It seems today is yet another fucking special ‘holiday’, “National Love Your Pet Day” which is unofficial, thankfully. This mania needs to bloody stop. A very small sample:
I have had pets all my life. There has never been one godsdamn day I have not loved them and cared for them. Much like my feelings for V.D., my answer to such fucking nonsense is NO. What is this but yet another way companies have to push insanely overpriced goodies and treats, and to guilt you for being a rotten pet owner if you aren’t spending a ton on junk for them? NO. If you need a day to remind you to play with your pet, dig around in the treat drawer, go for a walk with them, or whatever, then you should not have a bloody pet in the first place. All responsible owners love their animals, they mean the world, and they would do anything for them already.
Besides this being a greedy capitalist’s wet dream, this is also yet another burden on all those people who have lost their beloved, no matter what type of animal. Back when I kept koi, I about collapsed when I lost my beautiful Guin when he was yet a babe, I’d had him for 16 years. Whatever being it might be which captures a human heart, we already care. We don’t need yet another stupid manufactured day. This sort of “special day” thing needs to die. In a fire.
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.
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″.
I don’t do Valentine’s Day, never have. I prefer a V.D. free life. If you’re a happily romantic or sentimental person who thinks it is just grand and wonderful, sure, celebrate it to your heart’s content in any way you see fit, but do everyone else a favour, and leave it there, please. Don’t foist it or your ideas about it on other people. From where I sit, it’s a burden of expectation, yet another thing you don’t dare forget or you’ll have a pissed off partner[s], and it’s a serious burden on those who are not in a relationship, or just come out of one.
The history is a very old one, and it’s based on the martyrdom of christian saints. Like so much else, it’s now turned into a multi-billion dollar enterprise for everyone except those who celebrate it. Perhaps instead of piling money into the pockets of those who don’t need it, you could do something simpler for a partner, a thoughtfulness based on your actual lives, rather than hearts, flowers, candy and an expensive dinner somewhere. Just a thought.
Or just shed the ‘celebration’ altogether. I don’t need an assigned day to tell my partner I love them, that happens all the time. ETA: Right now, my partner is acting as my primary caregiver in regard to my cancer, they could hardly express their love more than that, which makes me loathe the superficiality of V.D. even more.
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.