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.

Cancer Chronicles 7: Shock & Silences.

The first day of chemo outfit: shirt with skulls, bag to match. The rest: black jeans, knee high Doc Martens lace ups.

The first day of chemo outfit: shirt with skulls, bag to match. The rest: black jeans, knee high Doc Martens lace ups, bright red hooded coat.

What your port looks like in use.

What your port looks like in use.

That is the giant pump which has to be attached to my port for two days. It’s 6″ in length and 7″ in diameter. They need to hire some people from Intel, it would miniaturized in no time. Has to be above the waist at all times. The other stuff is what I need to flush the port after disengaging the pump.

Cancer. The shock of it all didn’t set in until this past Monday (22nd). That’s when I felt like I was going to fall apart, and it was hard to keep tears at bay. My oncologist asked me if I wanted to start chemo this week or next; I replied “now is best, because I’m at the point of running away and not coming back.” Doc thought I was joking, but I wasn’t. I really wanted to run. So, yesterday was my first chemo day. My schedule will at least be less hectic for a while, and I’m grateful for that one.

Before I talk about the chemo, I want to briefly address reactions to CANCER. There will be a fair amount of people who you thought would have at least given you a “oh, that sucks”, but instead, don’t acknowledge the CANCER or you, in any way at all. If you’re newly diagnosed, don’t be surprised by that. A lot of people simply will not acknowledge or address the issue. There are other unexpected reactions too. Yesterday, stopped by my pharmacy to pick up Dexamethasone, and one of my pharmacists started crying when she found out I had cancer. That made me crumple up inside, and I felt awful for making her feel awful. For the most part, supportive friends and family are right there for you, and you can get to know your fellow travelers in treatment, too.

Okay, chemo. In my hospital, the chemo suite is called The Infusion Center. Long room, more like a very large, central hall, lined with individual stations. Each station has a comfortable recliner, a chair side table, IV stand to one side, and an overhead, swivel mount television with earphones. There’s a stack of extra chairs for whoever you bring with you. You go in, sit down, sign a bunch of forms, and repeat your surname and birth date for the zillionth fucking time. I’m seriously contemplating giving my birthdate as Fall 1529. I don’t think medical would be amused. Every single person you talk to, “okay, give me your name and birth date”. I know they don’t want to make mistakes, but fuck me, I’m beyond tired of it. Being a smart-ass helps, which is why I went with a skull theme. It was mostly appreciated by med staff. ETA: my infusion center comes with a nurse who never shuts up. (I was seated across from the nurses station.) Headphones and your choice of at least 4 hours of music: a very good thing.

I got all the lectures about Oxaliplatin, in particular, the cold sensitivity and possibility of peripheral neuropathy.  So far, I seem to have escaped those effects, but it’s early days yet. I have not come close to drinking as much fluid as I have been instructed to do, and I’m still pissing like an overhydrated horse. Which reminds me, forgot to get Kool-Aid. There’s only so much apple juice a person can take.

After chemo, I was feeling starved, so we ate, then we had to do a bit of shopping. I was feeling okay enough to do that, but having that giant capsule swinging about was a right pain in the arse. I was a bit antsy because I had not remembered to take my immodium with me, and while I didn’t really have that “ohgodsfuck diarrhea” sensation, I did have a weird one, which could be best described as the tumour playing at being Jack Nicholson axing his way through the door in The Shining. Just a vague sort of terror that the tumour might do something utterly mortifying while in public. So, remember to pack all the little stuff if you’re going to be out and about after chemo.

Going home, I could not keep my eyes open. I stumbled into the house, managed to shed clothes, and fall on the bed, got the giant capsule tucked under the pillow, and was out like a light for several hours. Woke up, ate too many fudge brownies, went back to bed, read Book of the Night by Oliver Pötzsch, a wonderfully fun book, went back to sleep. Biggest effects so far: crampy, tired, acid reflux and really sore leg muscles for some reason. That set in rather early in the infusion center. Other than that, okay. I’ll be right happy to get rid of this damn capsule on Friday, seriously bad design flourishes in the medical industry. Initially, they wanted me back on Friday to have the pump removed, but when we told them that was not convenient, I got instructions to do it all myself.

Still have the nasty butt pain, and can’t go unmedicated for very long, which is on the annoying side, but I’ll live. Hahaha. I feel another nap coming on…

ETA: Food. Stock up on frozen foods, and easy to prepare stuff, like cottage cheese with fruit or veg. Have things like chicken salad prepared, and bread in the house. If someone loves you to pieces and can cook, have them do up some casseroles for you. The easier it is to eat, the more likely it is you’ll actually do that. You’re much more likely to decide eating is not so important if you wander into the kitchen, and decide you really don’t want to be cooking. Also, stock up on all the ‘bad for ya’ stuff: ice cream, brownies, muffins, cup cakes, banana bread, what have you. If you have colon cancer, by the time you get to radiation, they’ll tell you to do a low fiber diet, which is basically all the stuff which is typically considered bad: white breads, pancakes, pasta, butter, cream, cheese, and so on. Having plenty of goodies around is a way to easily pig out when you’re feeling like it.

Cancer Chronicles 6: Tired and Tunneled.

Cancer Vixen, Marisa Acocella Marchetto.

Warning: below the fold is a photo of my chemo port taken right after surgery. It’s not hideous, looks kinda like a body mod gone wrong, but if you’re sensitive, don’t look.

So, the 19th. My diagnosis was on Dec. 19th. January 19th was medical hell day. I’m starting to dislike 19ths. Yesterday, had to leave the house at 5:45am for a full day: PET scan, radiation doc visit, MRI, and chemo port installation. We finished up all the medical stuff at 6pm. Tired doesn’t begin to cover it.

[Read more…]

Cancer Chronicles 5: A Refusal.

This won’t be my first time ranting about ostomy bags. They are badly designed, with little thought, and they are spectacularly ugly. You have 3 colour choices: beige and clear, beige all the way, or beige and white. Let’s not pretend people are this ugly ass shade of beige, they aren’t. Medical supply companies are apparently still on the colonial system too: one shade fits all. It doesn’t. Why in the fuckety fuck don’t they make them in colours? People who are using these things have gone through a big change in their life, they aren’t dead, and many of us refuse to start walking about in ugly ass smocks or shirts 2 sizes too big to try and hide them, and we happen to like colour. A range of solid colours would be good. Good in every way, because colours are cheerful, and they tend to make people feel better. It’s not enough I get to deal with a colostomy, I have to deal with deadly ugly and depressing too? No, I refuse. I also refuse to be complicit in helping medical supply companies keep the stigma of such procedures alive and well. Who in the fuck wouldn’t be trying to cover up that level of ugly? So…

© C. Ford.

enter Sharpie Markers. :D A couple of the bags are gessoed, a couple are not. The markers need a small amount of dry time, after that, they’re golden, no smears. This is all quick and dirty, nothing fantastic, but it’s not deadly beige. Fuck beige, I never want to see it again. It should be struck off the official colour list. These are, of course, my out and about bags. I can’t be arsed to do this for when I’m just working at home, but when I do have to go out, I’ll feel much better about them. If you’re stuck with a deadly ugly beige medical appliance which is fabric, Sharpie makes a lovely range of fabric markers, and there’s a whole lot of fabric paint out there too, all of it stable and washable! I say it’s time for a full on revolt against the standard, racist, ugly ass beige medical supply sticks everyone with. Fuck that noise. Fuck cancer, too.

And a huge shout out to Sharpie for some great products!

Cancer Chronicles 4: Pathology & Expression.

So…eventually, the path report makes its way to your door. Mine: Adenocarcinoma, moderately differentiated, with invasive feature and ulceration. Translation: invasive adenocarcinoma. There, that was easy. In my case, nothing I didn’t know already, but don’t get frittered by language. Look it up. If you have questions, write them down. Never be afraid to ask. The more you understand, the better you’ll be able to manage.

If ever there was a time to express yourself, this is that time. (You should be doing that anyway. Don’t wait til’ cancer comes knocking.) This is a good time to treat yourself a little. Doesn’t have to be major. I got a couple things at Big Lots:

© C. Ford.

You would not believe how incredibly obnoxious that pink nail polish is, dialed up to about nth. Everyone in the hospital loved it, kinda cheered us all up. Looks right good on the toes. Of course, for me, yet more art supplies. Got a lovely case of Daler Rowney pencils, which brings me to expression.

© C. Ford.

Draw. Write. Craft. Sing. Get your camera out. Make up new and awful fart jokes. Mortify your teenager by whipping your shirt open and saying “look, you were right, I’m full of shit!” Howl out your window and freak the fuck out of your neighbours. (They deserve it for those fucking fireworks after midnight anyway.) Something. Anything. I can’t quite do a nice bellyflop on my bed and play around with markers yet, but I’m working on it. Did you know you can get paper clips which are shaped like elephants? Make a chain of elephants. The list goes on. And on. Embrace all the moments. Even when you have a good prognosis in front of you, it doesn’t hurt to be aware of the clock. I was taking a whole lot for granted, and this has been quite the smack. And right now, I have a whole lot of rats who deserve a bit better from me, so I’m going to go and make them one hell of a salad. :D

Cancer Chronicles 3: The Naming.

It’s amazing how one thing can make such a big difference. In my case, stomach muscle. That’s sliced in order to do the colostomy, and it’s sheer agony to force that muscle into action, and there’s no choice about that, either. You can’t just lie flat for the time it takes to heal. Well, I suppose you could, but that’s not me, and I don’t like catheters. Anyroad, while you’re still in hospital, the mass amount of drugs helps to blunt the pain a bit when you have to get into a sitting or standing position. Once you’re home, it’s a symphony of contortion and pain trying to figure out the easiest way to get yourself sitting or standing. The injured and screaming stomach muscle, along with the stoma, feels incredibly heavy, you feel very weighed down. I’m 10 days out now, and the stomach muscle still feels sore, like it would after a heavy workout, but it’s a world of difference, being able to sit up, stand up straight, and be able to get into and out of bed without mass problems. I don’t feel weighted down, either. So. Much. Better.

I’m finding a need to hang on to my sense of humour with everything I have. Still on a lot of fart humour here. Makes me feel very juvenile, but that’s okay. Better than feeling ancient. So, as we’ll be living together quite a while, I figured it was time to name my stoma. Yeah, yeah, it’s silly. I don’t care. I have this very old name book, and I was flipping through, when a meaning caught my eye and made me laugh: helmeted battle maid. I looked down at my stoma, freshly bagged, and thought “that’s perfect!” The name? Grimhild. Seriously perfect. Out of curiosity, I looked Grimhild up – turns out in any incarnation, she wasn’t a nice lady type. That works too, because I am not feeling at all nice towards this part of me gone rogue.

Things get better when you get your appetite back, too. This took me quite a time, I didn’t have much appetite at all until a couple of days ago, and eating small amounts throughout the day/evening works best for me, rather than trying to do standard meals. I’ve also learned it’s best to be very fluid when it comes to sleep. This isn’t an option for everyone, especially those who want to get back to work; but I’ve found I often just can’t get to sleep when I want, so whenever I feel like I could nod off, I lay down and sleep for as long as I need. So far, that’s keeping me feeling fair energetic.

Now, I do believe Grimhild is making noises along the lines of ‘feed me’, so breakfast it is.

Cancer Chronicles 2: The Farting.

Cartoon by Mark Ewbie.

One thing you get to contemplate with a colostomy is being turned into a fart factory. I have not yet ventured out and about with my new arrangement; I’m waiting for the stoma swelling to go down one of these days. Even then, it will be interesting. The very first time you fart after having an ostomy is a strange sensation, a wrong sensation. The gas moves in the wrong direction, and it’s a bit of a shock, that first fart. You start to go into the autoclench before you realize that won’t help, and you have no way to clench on farts which are on the upside.

And then there’s the ballooning. If you expel a good amount of gas, your bag balloons up, and you have to bleed it to get the gas out. At least in this, you have a choice as to whether or not you’ll be inflicting your bag o’ farts on the unwitting. I have to say, it would be very mean to do so, but if it’s someone you don’t like, well…

You do adjust very quickly, after the first fart shock; when you feel one coming on, your hand immediately goes over your stoma while you try to look innocent. Right now, I can only envision myself out and about while clutching a pillow to my abdomen, so I think it will be a while before I make that first public appearance anywhere. Long car rides are a horrorshow of discomfort and peak level gas production. It’s recommended that when a long drive is necessary, that you pause and get out to stretch one or two times if you have an ostomy. There’s no particular reason given, but I am now certain this is so you can sneakily bleed the gas out of your bag without asphyxiating your driver. :D

Also, having an ostomy does not turn you into Pepé Le Pew – there’s no stench wafting about your person. As long as your bag is properly sealed, you’re fine. If you’re on the paranoid side about such things though, there are filters and such available. With an ostomy, you’re more in control of your farting, which is kinda nice. You also have the advantage of a weapons grade tool to chase away unwanted visitors, like Jehovah Witnesses. ;)

And today, I’m going to make things so much worse for myself, because I have a craving for refried beans. Well, it’s just me, the dogs, cats, and rats. And now, I can truly relate to He-Gassen. And I encourage everyone to relate their fave fart stories.

Cancer Chronicles 1.

CN: icky medical stuff. If you’re sensitive, don’t read.

Sore. Punctured. Bruised. Discoloured. I’m 7 days out from diagnosis, 6 days out from surgery. My protruding gut is still very swollen, and it feels so damn heavy. It’s difficult to walk with a straight back. My stomach muscles screech in protest over normal movements. Not so normal now. I feel…limited.

Today, I showered, and soaked off all the steri-strips and caked blood. Then it was time for a bag change. The instructions all say to rinse the old bag, then put it in a plastic baggie, seal it, then put that in a second baggie. They come with the stigma and shame included. I rinsed mine out and tossed it in the trash. There is a sense of revulsion; of a loss of control. I expect that will lessen with practice and experience. I don’t even know how to describe what it’s like, gently cleaning off an internal organ.

It hit early this morning – for the first time in my life, I feel old. Frail. I despise feeling this way. Somewhere, under the weight of this, is my usual self, but I don’t feel as though I can shift this density off. I know I need to eat, but I can’t find my appetite. I do have the perfect excuse to over indulge in ice cream though.

Patience is not a virtue I possess; I hate all the waiting. I won’t even see the radiation therapy Doc until 1/15. I just want this done. I want to rip out this part of me gone rogue, stomp it to death and get back to my life. I want my gut back on the inside where it belongs. This is all going to take so damn long.

My hair keeps trailing through my thoughts. How long do I try to keep it? Do I hope it doesn’t start falling out during radiation therapy? Can I manage to keep it until chemo starts? I don’t know, but the thought of losing my hair is bugging me more and more. I know it’s a minor thing; hair grows back. Still, this is what I get stuck on – having to surrender those 39 inches of hair.

I need to get my studio cleaned up, because I’ll have to start painting soon, it’s the only emotional outlet I have. Ideas flit in and out, nothing has settled yet. Feeling like broken pieces of coloured glass; there’s no coherence yet, the brighter colours subsumed by a muddied swirl of black, maroon, and purple, with threads of brightly spilled blood throughout.

I won’t be inflicting these chronicles on you all too often, just as the mood and need strike.

ETA: I put my rings back on. I was instructed to remove all jewelry for the colonoscopy, so I did, and then I ended up in hospital for four days. I thought about putting them back on when I got home, but just let them lie. I shouldn’t have done that, because nekkid fingers aren’t me. I think I need some new rings. Yep, I do.  The little things, they aren’t so little.

Fuck Cancer: Caine’s Journey

In December of 2017 Caine, Chris ‘C’ Ford, was diagnosed with a malignant tumor and underwent an emergency colostomy followed by months of chemotherapy and radiation therapy. It was a long and difficult battle for Caine, but throughout she wrote eloquently and fearlessly about it all. In August of 2018 Caine lost her battle with cancer, but her writing and artwork live on.  This page contains all the links to Caine’s writings about her diagnosis and treatment as well as links to all of Caine’s cancer related artwork.  The writings are in chronological order and I’ve included some pieces that Caine wrote between her actual Cancer Chronicles. I’ve done a slow search backwards in time and hope that I’ve included everything. Please feel free to contact me at our email affinitysubmissions@gmail.com. The address is permanently on the sidebar below. You will also find here the Affinity notice of Caine’s death, tributes to Caine from her readers and C’s eulogy, written by her husband of nearly 40 years and shared with the Affinity community. This page will be permanently linked at the top of the left sidebar. Comments will remain open and will be monitored. Please feel free to leave a respectful message.

 

 

Writings

 

 

Cancer Chronicles 1.  Fuck Cancer.

 

 

Cartoon by Mark Ewbie.

Cancer Chronicles 2:  The Farting.

 

 

 

Cancer Chronicles 3:  The Naming.

 

 

Cancer Chronicles 4:  Pathology & Expression.

 

 

 

Cancer Chronicles 5:  A Refusal.

 

 

 

 

 

Cancer Chronicles 6:  Tired and Tunneled.

 

 

 

 

 

 

Cancer Chronicles 7:  Shock and Silences.

 

 

 

 

 

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

 

 

 

 

 

 

hd-free images.

Cancer Chronicles 9:  Anger.

 

 

 

 

 

 

Google Images, screenshot.

Cancer Chronicles 10: Standards & Stories.

 

 

 

 

 

Cancer Chronicles 11: Home.

 

 

 

 

 

 

 

 

Paper, paper, paper.

Cancer Chronicles 12: Creeping Isolation.

 

 

 

 

 

 

Cancer Chronicles 13: Breakdown Days & Fuck That Noise.

 

 

 

 

 

 

 

Some of the stuff which goes with me on chemo days.

Cancer Chronicles 14: Chemo Brain.

 

 

 

 

 

 

 

The chemo pump.

Cancer Chronicles 15: The Takeover.

 

 

 

 

Cancer Chronicle Notes

 

 

 

 

 

 

Cancer Chronicles 16: I Just Don’t Care.

 

 

 

CC Notes: Almost Back To Life.

 

 

 

 

 

 

 

My new best friend, Immodium.

Cancer Chronicles 17: Struggling.

 

 

 

 

 

 

Cancer Chronicles 18: Water Is Life.

 

 

 

 

 

 

Sorry, gone for a while…

 

 

 

 

 

 

CC Notes:  When Prolapse Happens.

 

 

 

 

 

Cancer Chronicles 19: Eight.

 

 

 

 

 

CC Notes: I’m not Sorry

 

 

 

 

 

 

Back, Sort Of…

 

 

 

 

 

 

Pills, Anyone?

 

 

 

 

 

 

Oral chemo paperwork.

Oral chemo paperwork.

Cancer Chronicles 20: “Hi, I’m five weeks.”

 

 

 

 

 

 

 

The prescribed goop for malnutrition.

Cancer Chronicles 21: Goop, Goodies, & Other Stuff.

 

 

 

 

 

 

Cancer Chronicles 22:  Ten More Days.

 

 

 

 

 

A Tad Messed Up Here

 

 

 

 

 

 

 

Caine is Two feathers swimming on waterGone

 

 

 

 

 

C’s Eulogy

 

♦♦♦

 

Artwork

In addition to being an accomplished photographer and writer, Caine was also a passionate and talented artist. Throughout her diagnosis and treatment she used her art to document her personal experience with cancer and to literally tell cancer to Fuck Off. She made visible and understandable the nature of cancer and her suffering in ways that words alone couldn’t. As her symptoms progressed Caine was often frustrated by exhaustion and increasing pain throughout her body, but in particular her beautiful hands which limited her ability to create. Listed below are the posts that Caine published regarding her journey with cancer through art.

                                                    Ostomy bags

CC5: A Refusal

Another Day, Another Bag

Working on…

Another Day, Another Bag 2

Bagged.

Cancer  Chronicles 7: Shock & Silences

 

 

 

First Reaction

Chemo Drawing #1. (First Reaction)

First Reaction, A Bit of Progress.

First Reaction: Bad Flash Update.

 

 

 

 

The Fight ©Caine, all right reserved

The Fight

Working on…(The Fight)

 

 

 

 

 

 

Hernia Comb

 

 

 

 

 

 

The Chemo Book.

 

 

 

 

 

 

 

 

 

Working on and slobbery dogs…

 

 

 

 

 

 

Inside Cancerland: Distortion Series.

 

 

 

 

 

 

Inside Cancerland: Distortion Series 2, Fatigue Reflected.

Inside Cancerland: Distortion Series 2, Fatigue Reflected.

Inside Cancerland Distortion Series 2.

 

 

 

 

 

 

 

 

Thorns

Head full of Thorns

Stupid is…(Thorns)

Thorns

Tools (Thorns)

 

 

 

 

 

Creatures of Brain Sorbet

 

 

 

 

 

 

 

 

 

♦♦♦

 

Tributes

There were also many tributes to Caine, including several of her friends who made plantings in her honor.

Remembering Caine

A Living Remembrance

Blade Braider

A Tree Story

Stages of a Flower

The Teeth of a Lion

Water is Life

It’s Still Beautiful

Barberry Flowers for Caine

 

Caine’s Recommended Reading

The Emperor of all Maladies 

 

Inside Cancerland: Distortion Series.

The Neulasta not only gifted me with a fucktonne of pain, it caused a full body shake. Shaking hands aren’t exactly conducive to drawing or painting, so I put the stuff I had been working on away, and started the distortion series, because it’s easier to cover up all the mistakes and slips. So, Inside Cancerland: Distortion Series 1, Infusion Invasion. 16″ x 20″, Watercolour and marker on Bristol. Click for full size.

© C. Ford, all rights reserved.

Cancer Decor: Contrast.

Yesterday’s Cancer Chronicle was mostly a &^%$$#fest over the cancer decor in oncology and there’s also the awful decor of the infusion center. Raucous Indignation was nice enough to do a photo walk through of all his oncology work spaces, giving me a chance to see what other oncologists do when it comes to decor. I have to say, for the most part, this is much better than what I get to stare at every two weeks.

The waiting room. Okay, the pictures are fine, if on the bland side. Oh, do I ever recognize those chair colours! No, bad. That awful beige makes the blue look horrible. Black would make the blue pop, and nothing wrong with basic black, goes with everything. In the case of cancer decor, beige is the death colour, not black. Or, a tonal shift could make all the difference. Shade the blue more aqua, and replace the beige with a pale yellow. Right there, you have warmth and light without being obnoxious. And the walls, no, bad walls!

The lav. The painting is lovely, but it would probably be better if it were in front of patients, rather than behind. Cancer patients often have to spend much too long of a time in a lav, so having something to stare at is good.

Beautiful paintings! The carpet? No! There’s that godawful beige and icky brown again. There’s nothing wrong with beautiful, life affirming colours on the floor. You could get a nice multi-colour blue to go with the paintings.

Nice. I don’t worry about exam rooms, there’s always stuff you poke around in.

Very nice! I’m crazy about the photos, those are so fabulous! That sort of thing should be everywhere. The walls – no! Even eggshell white would be an improvement, but I’d go with a pale yellow. The blue chairs are okay, not wild about them, but those um, beige-green ones? Ick, no. Your visitor chairs are nice enough, why not go with blue and black chairs? Again, the black would make the blue pop, and would tie in with the visitor chairs. The curtains are quite nice. And I know this isn’t you, but hospital standard – the floors. Oh, awful.

The triptych is fantastic, beautiful in every way. Those walls, though…

We’ve Been Spring Cleaning

Seasons change and so do blogs. Here at Affinity we’re making a few changes to how things look. The first change you’ll see will be the top section of the left sidebar. We’ve collected all Caine’s cancer related writings and artwork into a new page that will stay permanently attached right where it’s always been only we’ve made it better. We’ve added all  Caine’s cancer related writings that happened between Cancer Chronicles so it’s now a comprehensive list organized by date. We’ve also added Caine’s death notice and the eulogy by her husband and best friend, Rick. Beneath that you will find Caine’s cancer related artwork and then tributes made by members of Caine’s international community. The page ends with a reading recommendation from Caine herself. Comments will be left open on the page and they’ll be  monitored regularly. The page is called Fuck Cancer: Caine’s Journey and it will be posted directly after this one. I hope I’ve managed to capture everything, but if you find any errors or omissions please let me know at affiniysubmissions@gmail.com. The address is always in the left sidebar under the colourful percolating head.

The next change you’ll notice is the addition of the blogging team. Just click on the person’s name and it will take you directly to their introductory profile post. Underneath that you’ll find the addition of our Twitter account following the TNET.

Some of you may have already noticed one of the biggest changes; no more ads. Finally. The ads have been removed from all Freethought Blogs making this a great time to check out the other bloggers on the Freethought Channel, where a lot of talented writing happens. The full roster of blogs is on the left sidebar. A bit farther down you’ll find a list with the most recent postings on the channel.

One last thing. Affinity isn’t just a blog, it’s a community and we welcome you and your submissions with glee. I am happiest when I get to see what’s up in your world so please send us whatever you’ve got to share: trees, flowers, birds, rocks, fish, animals, hobbies, food… anything, really.  We’re a curious bunch and if it interests you, chances are it will interest us. Just use the address on the left sidebar.