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.

Comments

  1. says

    Are mouthsores a sideeffect of the chemo? I get those sometimes from pure stress alone. Never tried baking soda on them.

    I do not know how the “positive thinking” angle developed in western culture, but to me it always seemed like a form of denial. Maybe if someone is predisposed to that kind of approach to life, they might get a reduced stress from that. But if you are not, it actually introduces another source of stress in addition to the ilness -- the stress of trying and failing to conform with cultural expectations. Well, in that case, fuck cultural expectations.

    Maybe it is another byproduct of a culture that is obessed with trying to find universal solutions to complex problems. But it is so prevalent that virtually everyone is infected with the “think pink” virus.

    We can do or have done to us multiple thinks during our lives that would increase our chances of getting cancer and it is sensible to try and avoid those things. So all we can do is not to increase our chances of getting cancer, but there is nothing whatsoever one can do to prevent cancer.

  2. says

    Charly:

    Are mouthsores a sideeffect of the chemo? I get those sometimes from pure stress alone. Never tried baking soda on them.

    They are. The baking soda water is the only recommend you get for them.

    I do not know how the “positive thinking” angle developed in western culture, but to me it always seemed like a form of denial. Maybe if someone is predisposed to that kind of approach to life, they might get a reduced stress from that. But if you are not, it actually introduces another source of stress in addition to the ilness — the stress of trying and failing to conform with cultural expectations. Well, in that case, fuck cultural expectations.

    Boy, am I ever right there with you.

  3. says

    Wait, you don’t get nice colon cancer swag bags in brown?

    As for the “positive thinking” shit, it cannot but make people feel bad. Reality cannot hold up with the imagined positivity and then people will have an added layer of worry.

  4. chris61 says

    FWIW and if you aren’t aware of them, both the American Cancer Society and the Mayo Clinic websites have suggestions for dealing with mouth sores.

  5. kestrel says

    Great post. It reminds me of two experiences, not that those were *like* this at all, it just reminded me of them.

    First experience: I had to be out of town for an extended period of time and while I was out of town, my animal carers were incredibly lax and allowed my ram to get his horns caught in the fence and then ignored him for at least two weeks, when I returned. That meant of course that there he stood, dead as could be. And their reaction was to start crying and overload me with emotion, so that what _I_ had to do was “comfort” the torturers of my ram. There was no room left over for my grief and horror at this. All that was eaten up by their need to push their emotions on me.

    The second experience. A family had been asleep in their home when suddenly the flame went out on their gas heater. The adults managed to get out of the house safely but the three children died. I remember a friend comforting the mother: the mother sat on the bed weeping and talking to my friend. My friend said NOTHING. She did not try to “solve the problem” (how do you solve that?!). She did not try to “cheer her up” (how can you make a person happy about that?!). She just sat there and listened.

    It is hard to walk that line: trying to stay normal, trying to not tread on a person’s ability to express themselves, trying not to get in the way of their emotion. It’s hard to listen, sometimes. But that’s OK. You keep trying. Every day, you try to get better at giving other people room to be themselves.

  6. says

    Giliell:

    Wait, you don’t get nice colon cancer swag bags in brown?

    Hahahahaha, nope! I think perhaps brown isn’t aggressively cheerful enough. :)

    Kestrel:

    I had to be out of town for an extended period of time and while I was out of town, my animal carers were incredibly lax and allowed my ram to get his horns caught in the fence and then ignored him for at least two weeks, when I returned. That meant of course that there he stood, dead as could be. And their reaction was to start crying and overload me with emotion, so that what _I_ had to do was “comfort” the torturers of my ram. There was no room left over for my grief and horror at this. All that was eaten up by their need to push their emotions on me.

    FFS! Christ, people can be the fucking worst. I’m so sorry, that had to be unbelievably traumatic.

  7. says

    chris61:

    FWIW and if you aren’t aware of them, both the American Cancer Society and the Mayo Clinic websites have suggestions for dealing with mouth sores.

    This comes under the heading of treating me like a dim 5 year old. I’m perfectly capable of thinking “a search might help” and then doing just that.

  8. says

    My colleague had a benign colon tumor two years ago. He said that he was shocked by how the doctor told him -- a laconic “you have a tumor in your rectum, we need to operate it” with no preparation, no warning, nothing. He said that he always thought that doctors would be better trained in how to breach such news to their patients. But neither he, nor I, nor anybody really, can say what would constitute that mystical “better training”. Because there is no saying how any particular person would react to any particular form of delivery. Someone might freak out if they are sprung up like he was, bu someone might freak even more by longwinded prelude in which they anticipate the ending.

    Maybe the laconic, dry, 100% information and nothing else delivery is actually the best there is.

  9. says

    Charly:

    My colleague had a benign colon tumor two years ago. He said that he was shocked by how the doctor told him — a laconic “you have a tumor in your rectum, we need to operate it” with no preparation, no warning, nothing.

    Doctors are people, and they all have their own way and manner of doing. Heh, my news was delivered in the same way, and my nurses were quite upset by it, but you know, there’s no good way to deliver bad news. With me, the moment I was conscious from the colonoscopy anesthesia, the doc says “you have a tumour” and didn’t need to add “malignant”, that was all in his face. While I was being transported, doc went and had the “hey, the wife has cancer” talk with Rick, so I got the ‘news’ from him, too, and if anything, that pissed me off, having him think he had to break the news to me.

  10. DavidinOz says

    Great post. I read Ehrenreich’s book a wee while back. At first I thought she was being a real bitch taking away people’s hope, but as I read further and thought longer, I knew she was right. I could trace her arguments back via the Tony Robbins, Norman Vincent Peale, every fucking sky pilot at a funeral.

    But there is a huge difference between the positive thinking she writes about, and the positive living that I see from you. You’re angry, hurt, frightened, and every other emotion that there is in a human, but you keep flipping the bird and being your self.

    As you know, I am a 65 year old, white, straight Anglo male, so I tick all the boxes for stoic, stiff upper lip, hard man stereotype, yet I tear up a little reading your chronicles. Don’t stop writing them, I am sure you helping more of us to understand and be better friends / companions when someone we love is in trouble.

    As to doctors -- I would like Greg House style if I was to receive a poor diagnosis. Straight to the point, matter of fact, this is what it is and this is what can / cant be done.

  11. Onamission5 says

    Freaking rant away! I have no patience at all with people who try to ‘buck up lil buckaroo’ me through difficulty or correct my honest emotions. None. Let me be mad, let me be forlorn, let me have my brief moment of panic, I am the commander of my emotional state and I know how to come back from this shit. Save the rah-rah’s for when I ask for them and stop telling me what is the right or wrong way to feel about something I’m going through! Clearing out the cobwebs of anger or pain or fear is the only way for some people-- a lot of people, I think-- to handle really difficult things, yet we’re told over and over, particularly if one is marginalized, that being messy or difficult, however temporarily, when life gets really hard is wrong. It’s so toxic.

  12. says

    David:

    But there is a huge difference between the positive thinking she writes about, and the positive living that I see from you. You’re angry, hurt, frightened, and every other emotion that there is in a human, but you keep flipping the bird and being your self.

    As you know, I am a 65 year old, white, straight Anglo male, so I tick all the boxes for stoic, stiff upper lip, hard man stereotype, yet I tear up a little reading your chronicles. Don’t stop writing them, I am sure you helping more of us to understand and be better friends / companions when someone we love is in trouble.

    Now I’m teared up too. Consider yourself hugged, with thanks.

  13. says

    Onamission5:

    Let me be mad, let me be forlorn, let me have my brief moment of panic, I am the commander of my emotional state and I know how to come back from this shit. Save the rah-rah’s for when I ask for them and stop telling me what is the right or wrong way to feel about something I’m going through! Clearing out the cobwebs of anger or pain or fear is the only way for some people-- a lot of people, I think-- to handle really difficult things, yet we’re told over and over, particularly if one is marginalized, that being messy or difficult, however temporarily, when life gets really hard is wrong. It’s so toxic.

    Right there with you. And yeah, if there’s one thing people need to realize, it’s that buck up shit that’s so damn poisonous. You burden people terribly with such expectations, and they don’t need more weight on their shoulders.

  14. says

    If cancer isn’t a completely valid license to be royally fucking pissed… [shakes head]

    What everyone else has already said.

  15. Raucous Indignation says

    Caine, that was magnificent and bracing. I agree with so much of what you wrote, and all of it resonates deeply with me. You hit the complicated issues of coping, grieving, transference and counter-transference right on the head. I can’t thank you enough for these posts. I cannot imagine the effort it is costing you to write them. Feel better. Hugs.

  16. Raucous Indignation says

    PS Ask your oncology team for a prescription for viscous lidocaine or “Magic” mouthwash for the mouth sores.

  17. says

    A friend of mine’s husband got a late-stage pancreatic cancer diagnosis, spring 2015. Unfortunately, since I was the guy who’s good at research, I got to field a lot of questions. One of them was “why?”
    It was particularly difficult, since the questioner grew up in a fundamentalist christian family, which had indoctrinated her with a toxic mix of teleology and guilt. She, and many of the people around her, immediately jumped to “what did he do that might have caused this?” It was really depressing to see how quickly some people would grasp at straws, and how quickly others would thoughtlessly offer them -- she was bombarded with suggestions for this therapy or that therapy or moving to near Johns Hopkins to get aboard the latest research treatments, etc. The worst was the “it’s god’s plan” -- to which I kept asking, “is god an asshole, then?” But “why?” “Why?” implies there’s a reason, which there usually isn’t. It’s just bad luck. Some star out there exploded and some atomic particle was sped up to the speed of light and hit some atoms in some DNA and bounced them around a bit. There’s no why.

    I’m a problem-solver, and someone else’s cancer becomes an un-solvable problem for me. If it’s someone I care about, my instinct is to help… but my understanding is that helping isn’t much of an option, really. So I bow out and try not to get in the way, wringing my hands and offering stupid advice. There were a few times when I was asked to “explain it to them” and had to walk some poor christ-addled hopeful through what a diagnosis of stage IV pancreatic cancer with large tumors in the liver and lungs means -- so I had to be The Voice of Reason, which equated to The Voice of Despair. I could see people immediately start to hate me, for conveying the information I was conveying. At least I was able to figure out what was going on before I started feeling bad or feeling angry; it’s a stressful time for everyone, and so many people really have no idea what’s going on and what cancer is.

    Orac did a blog posting a bunch of years ago [orac] that I thought was useful, and I kept handing out copies of it; it explains some of the stuff pretty well.

    As a scion of a Hopkins family growing up in the 70s and later working at JHH, my immediate reaction to the word “cancer” hearks back to some of the positively medieval interventions they were trying in the 70s. I have to struggle to remember that there has been a tremendous improvement. I have a family member who has been surviving a Stage IV lung cancer for over a decade, now (when you get a colonoscopy and the doctor finds lung tissue growing in your colon, that’s a “big uh-oh” …) so I think there is a whole generation of us who grew up on Death Be Not Proud and Cancer Ward and it’s a scary death sentence, so we hunker down and don’t know what to say.

  18. Raucous Indignation says

    PPS You’re not a dim anything, but both of those are prescription drugs in New York.

  19. says

    Raucous Indignation:

    PS Ask your oncology team for a prescription for viscous lidocaine or “Magic” mouthwash for the mouth sores.

    Ooh, thank you, I shall do so! My med team is great for immediately calling stuff into my pharmacy, too.

  20. Raucous Indignation says

    Charly, or Everybody really, it’s only recently that doctors have been given any training to break bad news. The science of doing that is very young. And it is hard. Experience eventually helps. Braking bad news is definitely in the “art” part of medicine.

  21. says

    Marcus:

    I have to struggle to remember that there has been a tremendous improvement. I have a family member who has been surviving a Stage IV lung cancer for over a decade, now (when you get a colonoscopy and the doctor finds lung tissue growing in your colon, that’s a “big uh-oh” …) so I think there is a whole generation of us who grew up on Death Be Not Proud and Cancer Ward and it’s a scary death sentence, so we hunker down and don’t know what to say.

    Oh yeah, I know someone else whose lung cancer was discovered via colonoscopy. That’s a bad fucking day. I keep saying, and I’ll say it many more times, that no one knows what the fuck to say. There really isn’t anything you can say that’s going to somehow make having cancer okay. So far, I’ve found a response of “that really fucking sucks, how are you doing?” is the best one to go with, or a variant thereof.

    Even with improvements, treatment is still rotten, bad, and barbaric. There’s little point trying to deny that, by insisting that things are just so gosh darn better. None of it feels better to the person being subjected to it. Yeah, it’s a good thing that survival rates are better, and that people aren’t dropping dead from treatment before the cancer, but you don’t feel very grateful for that. Instead, you either feel like crying your fucking heart out or ripping someone’s head off.

  22. says

    Caine, I can vouch that your stories and sharing here are valuable -- not in the abstract or probably, but in an immediate and concrete way. A close friend of mine, one of the few who helped me survive the ER psychward last year, has recently been diagnosed with breast cancer. She has a veritable army of sincere, determined people for support, but I am not so sure most of them are familiar with how any of this feels for the patient.

    Your chronicles are one of the resources I am using to understand how to support her properly and respectfully and without accidentally making her be ‘The Patient’ instead of what she is, which is the same damn person as three months ago, just with one more huge asshole problem on her plate of asshole problems.

    (The others are the fact that I nursed an ex through colon cancer for two years, and have also trained as a death doula. Hopefully that latter won’t be directly relevant, but there’s a LOT in it about respect and listening and not forgetting that the people you’re working with are people and always were.)

  23. says

    Abbeycadabra:

    Your chronicles are one of the resources I am using to understand how to support her properly and respectfully and without accidentally making her be ‘The Patient’ instead of what she is, which is the same damn person as three months ago, just with one more huge asshole problem on her plate of asshole problems.

    You’ve got it. Everything. That’s just what it is, one more huge asshole problem. And being turned into ‘The Patient’ is the worst -- it’s hard to get people to understand, but it’s a way of both objectifying and othering someone. Unfortunately, it’s an all too common way for people to cope.

    All my best to you and your friend, my thoughts are with you, and my hand in yours.

  24. Sean Boyd says

    Thank you for writing all that you have about your diagnosis and treatment. And thank you for remembering the caregivers. The sad part of caregiver burnout is that there are many burned-out caregivers who don’t have access to quality respite care. My dad wasn’t eligible for any respite care coverage by his insurance until he enrolled in at-home hospice…the irony is, the work load eased up considerably when he enrolled. Over eight or so years of caregiving, one learns to stop feeling guilty (or at least tries to) about middle-of-the-day naps, or wanting to go grocery shopping because it constitutes time off.

    Anyhow, that tugging feeling coming from the west is me pulling for you.

  25. says

    Sean:

    The sad part of caregiver burnout is that there are many burned-out caregivers who don’t have access to quality respite care.

    I know, and that’s where friends who wish to help can do great good, by being there for caregivers, for allowing respite. One memory which always makes me smile is hearing an odd noise, and going to investigate. There was Rick, with his back to me, flying his little helicopter around. I quietly left the room. That kind of thing might seem silly, but it isn’t. You have to be able grasp sanity where you can; to have normal moments.

    Over eight or so years of caregiving, one learns to stop feeling guilty (or at least tries to) about middle-of-the-day naps, or wanting to go grocery shopping because it constitutes time off.

    It shouldn’t be that way. At all. It does no good to toss yourself onto the sacrificial pyre. The burdens are heavy, all the way around.

    Anyhow, that tugging feeling coming from the west is me pulling for you.

    Thank you.

  26. Raucous Indignation says

    Days that include a diagnosis of cancer are bad days, as a rule, I think. I’ll spare everyone the bizarre and frightful diagnoses I’ve seen and made.

  27. chigau (違う) says

    People who push PositiveThinking™ should do it with a rendition of
    Always Look on the Bright Side of Life.

  28. jazzlet says

    I was never that into positive thinking, but my hate of it was cemented shortly after my mother died when I was twenty. Some idiot said “Cheer up, it might never happen!” “Bit fucking late, it already has”. Still it shut him up like no other come back I have made to anyone else has.And being angry in the right response to some things, not something to be scared of in yourself or in others, but so many people are scared of anger when suppressing righteous anger just screws you up.

    Giliel I like the idea of a brown bag of swag, good one!

  29. denisevincent says

    I’m just a few months shy of 10 years since cancer treatment and I’M STILL FURIOUS. Worse, I was a healthcare improvement pro, so not only am I aware of the clinical care gaps (baking soda for mouth sores? WTF don’t clinicians know to tell people that 30 grams of L-glutamine powder a day will heal those sores, and may grow your hair back too?), but I’m also aware of the administrative failures, the medical training failures (I had to explain genomics to my new PCP, and what to expect when speaking to patients who’ve survived traumatic illnesses to a psychiatrist during a cognitive eval), never mind the astonishing denialism of the Just World myth that infects almost every aspect of our culture.

    Even if you’re never heard of the Just World myth, you already know its prime directive: Comply, and you will be rewarded. The corollary may be better known to you: You get what you deserve, so bad things only happen to bad people. Never mind that the ashy, staggering, corpse-like bodies of patients with major illnesses can only remind you of your own mortality, so you’ll jump in to ‘help’, and then become aggravated when it turns out that the patients usually have more information and have been aggressively fighting for their lives. They didn’t do anything wrong? But they’re dying anyway? Must be their negative attitudes, must be their lifestyles, they must have wished for extra attention (this last one was told to me by one of the nurses in my department, profanity and teeth gnashing go here).

    Add to these aggravations the crushing burden of gender roles. Of course the myth of positive thinking is enforced through Pinkwashing, because women are only valuable as decor (or sex slaves), so whining is not tolerated, but if you don’t wail and rip your hair out when receiving the diagnosis, there’s something wrong with you too. As example of this reaction, when a new patient joined our Young Survivors group, after other women spewed pink positive nonsense for her, I told her “This is the hardest thing that you’ll ever do in your life, but you’re in a great facility (just opened, got National Cancer Institute Community Cancer Centers designation) with talented people, so ask for help when you need it.” One of the other women replied that I had a negative attitude, and that I should see a psychotherapist. Yet, I’m still alive (for a while longer), while the new member was dead within a year, and so are half of the other women (the last time I checked, since I stopped checking around number 8).

    The latest cause of teeth gnashing has been end-of-life planning, because after a recurrence scare (and hemicolectomy) in 2015, I decided that I’d spit in a tube and port my genome over to someplace with more information than the FDA will allow 23andMe to report. Plus, I can actually read and comprehend many clinical studies, never mind understanding epidemiology and statistics. You know this grim bit is coming: oops, I’m carrying a genetic variant in NQO1 (NAD(P)H quinone dehydrogenase 1) that doesn’t break down compounds with benzene rings (such as Anthracycline chemo) very well. People with this genetic variant tend to die within ten years when they’ve been overexposed to things that this NQO1 variant can’t handle, usually from some kind of cardiovascular accident, frequently from an AMI (heart attack). There’s over a decade of research, and the sex, ethnicity and type of illness (or even industrial benzene accident) don’t matter; between 92% and 95% of people with this variant are dead within 10 years. And since I can easily track the acceleration of my decline (so much homocysteine spewing from broken metabolic processes that the vitreous humor in both eyes detached in 2014, had to sell the car this month because I can’t see well enough to drive now) , I’m not sanguine that I’ll be able to vote in 2018. And yet, when I’m working with professionals to get my affairs in order, it’s a freaking three ring circus of denialism. I’ve had to nag attorneys to return my calls (got my estate docs updated for latest state of residence, check) and estate admins (finally received, filled out, and return a basic client information sheet, check). I wanted an IRS worksheet signed so that whoever fills out my final taxes can file at the lower Disabled rate for me; it took four tries, mostly because clinicians didn’t read my electronic medical record, even after I’d sent them messages through their system detailing my situation and what I needed. Fortunately, it only took 20 minutes (after two messages) for my previous PCP to sign a DNR for me, but only because I grabbed her hand (when she tried to reassure me about low risks for breast cancer recurrence) and told her slowly, “No. These patients aren’t dying from cancer. The sex and kind of cancer don’t matter. They’re dying of heart attacks because their bodies can’t handle Anthracycline chemo.” I made her cry, which was completely contrary to my intent.

    You know who else believed my analysis? Alzheimer’s researchers at University of Washington. They advertised for people who’d be dead soon, hoping for old Alzheimer’s brains, and I asked them if they’d like a younger dead brain, from someone with eight Alzheimer’s gene variants (out of 20 found by U Wisconsin through a big data study of 3 Million Alzheimer’s patients’ genomes). Their pharmaceutical sponsor (radionuclide tags for tau protein) said ‘Heck, yeah’, so I guess my math is right? Shudder. The Nice PM has volunteered to take in my old orange cat, one less thing to worry about, check. Otherwise, I’m on my own. I’m the one doing the Swedish Death Cleaning, I’m the one selling the car, organizing paperwork, creating an online family tree for the descendants of my kin (to go along with the DNA stuff).

    However, I have zero hope that anyone will remember my story (true story, bra, I swearz) because people don’t usually remember what they’re told, unless it’s a really good story. If there’s anything to take away from this long rant, I hope that someone remembers to research L-glutamine powder for mouth sores in cancer patients, or that someone remembers that patients with NQO1 SNP rs1800566 should never be given Adriamycin, or any kind of Anthracycline chemo. There’s a black box warning in the EU to test for this, fer cryin’ out loud! Why not in the US?

    WHY SO MUCH STUPID IN ONCOLOGY?
    Yeah, still really angry.

  30. says

    Marcus:

    A friend of mine’s husband got a late-stage pancreatic cancer diagnosis, spring 2015. Unfortunately, since I was the guy who’s good at research, I got to field a lot of questions. One of them was “why?”

    There is not one good thing about cancer. It fucking sucks for anyone drawn into its circle. We are animals driven to ask and answer questions, but there is no answer here. There’s no answer when it comes to cancer. There’s no finger of blame to point, no aha! That’s not satisfying in any respect, so a lot of people keep on looking, and a lot of people indulge in pointless blaming. Cancer brings out recriminations, too, from yourself and others. There’s no reason, there’s no rhyme, cancer is a horror come home to roost, and there you are. That’s why so many people run away or turn away, because it’s a horror which lives in everyone’s head, that evil little whisper twining like funereal silk in your cells: what if it’s cancer?

    No one in their right mind wants to face that one. No one wants to deal with it. No one knows how to behave, or how to react, or what the fuck to do. You are far from alone in feeling lost in that regard. I’m there myself, and all I can do is go along for the ride, wherever the hell it takes me. What I have right now, is what I can hold -- my friends, my family, art, my desire to live at least long enough to see the first fucking dandelion of Spring, and more anger and tears than I feel I can adequately hold.

  31. says

    Denise @ 32:

    I’m just a few months shy of 10 years since cancer treatment and I’M STILL FURIOUS.

    If I live that long, I’m pretty sure I’ll still be furious too. It runs deep. I will absolutely look into the L-glutamine powder, I thank you for that, because it’s just the one right now, and it’s making me fucking crazy.

    However, I have zero hope that anyone will remember my story (true story, bra, I swearz) because people don’t usually remember what they’re told, unless it’s a really good story. If there’s anything to take away from this long rant, I hope that someone remembers to research L-glutamine powder for mouth sores in cancer patients, or that someone remembers that patients with NQO1 SNP rs1800566 should never be given Adriamycin, or any kind of Anthracycline chemo. There’s a black box warning in the EU to test for this, fer cryin’ out loud! Why not in the US?

    I’ll remember, Denise. And I’ll remember you. And the people who read this? They’ll remember too, and your story may well help so many other people. If you’re like me, it’s enough if it helps even one person. Seems the rage fuel just never ends, and I can’t even begin to say how much it sucks for you to have so much denial and trouble in taking care of the last stage of your life. Y’know, I’m hoping I’ll make it, and my prognosis isn’t awful, but I still have to do some of that stuff myself, the DNR, updated will, all that crap. And I have to make a decision about which people to do a full body donation with, and I need to do the Swedish death cleaning m’self. I don’t want to, but y’know…and fuck knows, having people going denialist and obstructionist on you when you need to get such stuff done, Christ, I don’t even have enough nasty words for such asses.

    I stand with you in your fury, Denise, and I thank you for your story, because it’s important, really important to me. And I know it will be for others, too. And it’s a timely reminder to do your research, rather than submitting meekly to your possible slaughter.

  32. says

    Marcus
    I think that pesky “why” is such a human thing. I remember that after the miscarriage, I kept asking it. Was there any thing I had done? Then I read that men over 35 carried a higher risk of fathering non-viable offspring and finally I had Someone to Blame. (I never told him) It felt so good for a week or two. It was a stage of grieving. I could finally accept that there was no why, but it was like a necessary step.

    The sad part of caregiver burnout is that there are many burned-out caregivers who don’t have access to quality respite care.

    This is something that I feel gets too little attention.
    We have switched focus on the person needing help, especially when talking about disabilities, but I think that sometimes it is a real case where the pendulum has swung too far.
    I remember that once on Pharyngula somebody said “I don’t care about the nurse. I didn’t choose to have cancer, but they chose to be a nurse” and I thought “yeah, fuck, which means that they can walk away from this”. Coming from a family of health care workers I know that they do, and the most caring and dedicate walk away first.
    Also, it leads to abuse and violence. I remember when the kids were babies, there were these moments when I was so burned out that they were no longer tiny innocent human beings who just had their needs and no way to satisfy them except through me, but monsters.
    Now, I didn’t do anything to them, but I also had resources, for example somebody else whom I could tell to take that kid and get away from me until I had gotten some sleep.

  33. says

    Caine, I noted you have changed the article in response to my comment. I do not know whether it is a typo or a misunderstanding, but you are stating that “you can certainly do things which may decrease the possibility of certain cancers” and that is incorrect, you can only do things that increase possibility of certain cancers. As in, whenever I do not put on a respirator when polishing bone or wood, I am increasing my chances of getting various types of respiratory tract cancers. But whenever I put my respirator dutifully on, I am not decreasing my chances of getting one, I merely stop making things worse.

    I also wish to ad that while it is generally advisable to try and avoid behaviors that increase cancer risks, it is never possible to avoid them all because a) they are not all known b) some have significant other benefits.
    _____________________

    denisevincent, thank you for your story. It is informative and it certainly should be looked into assuring that when curing one disease another one is not caused. Sadly this in part is obstructed by gross commercialism of health care around the world.

    Life is 100% fatal and it is useless to pretend othervise. And we are woefuly unprepared to deal with that, our culture is build around denial of that. People do not want to accept it or talk about it. Appart from religious bulshitters selling immortality delusions.

    I think we in western world have become way too comfortable with our lives, with dying people being hauled out of sight into hospitals before death for us not to see, so that many, if not most, of us are detached and oblivious to this part of life. We have become so afraid of our mortality that some people deny it in various forms.

  34. says

    Re: end of life provisions
    I hope, I think attitudes are changing, at least here*. Still I see too many people being thrown into crisis because on top of losing a loved one they now also have to deal with matters like a potential financial disaster. My aunt recently lost her dad. Suddenly, but at his age not entirely unexpectedly. He was also the caregiver of her mum who suffers from dementia. Now she’s in a nursing home and they have to cough up the difference between her pension, health insurance payments and the cost of the home or lose their own home.
    My grandparents were always very sensible people. They sold the house to my mum long before they were really old and frail, they made us sign their patient’s will that declared what treatment they would want and what not.
    It was not nice reading and signing those, but it was necessary.
    Denise
    Your story is not forgotten. Your story is read and remembered and it changes things.

    *Reminds me that we need to disown the kids. Only half kidding, but there’s a construct in Germany where you make sure the surviving partner inherits everything first and the kids only inherit when the other partner dies. It was kind of moot before we bought the house, but it is important to have sich a thing in place once you got one.

  35. Ice Swimmer says

    Thank you Caine, Denise and others. The original post and discussion have been very informative. Even if the illnesses I’ll have to deal with, in one role or another may not be cancers, I think the general principles will stand.

  36. Nerd of Redhead, Dances OM Trolls says

    Don’t worry about your anger, it’s expected, and I will mimic a trained psychologist and listen, but I don’t have much to offer for advice. My area of experience is different.

    For example, you did the right thing with Rick by letting him play with his helicopter uninterrupted. No doubt he would have been embarrassed in not showing total concern to you. But he needs to reduce his stress levels to best deal with things.

    I ignore all the idiot’s claims that X will prevent cancer. As PZ Meyers has posted in his blog, cancer is a disease where the cells have mutated, and certain metabolic pathways and feedback loops no longer work properly. Nothing will repair the mutations, but there are things that will increase it. Eating broccoli or garlic won’t stop natural mutations from happening. But inhaling large amounts of benzene or halogenated solvents might increase the mutation rate.

    Keep posting your treatment, as there might be folks like me to give your warnings or cautions.

    Keep fighting. I’m behind you.

  37. Raucous Indignation says

    I never had much luck with recommending L-glutamine. I didn’t see/recognise much difference, although a few patients swore by it. The data is patchy for 5-FU based chemotherapy; there are a reasonable number of small and underpowered randomised clinical trial with conflicting results. Even though it’s been investigated for as long as I’ve been an oncologist. The standard recommended dose of L-glutamine is 10 grams by mouth the times daily. Probably doesn’t do any harm, i.e. make the chemo less effective. As far as we know. Oral cryotherapy is more promising for preventing 5-FU caused mucositis. The data, while newer, is much more convincing. I have no experience to share, I’m afraid. The big impediment in your case is that a mouth full of ice chips will trigger the cold-induced oxaliplatin associated neuropathy, especially the
    pharyngolaryngeal dysesthesia.

    Behind a paywall, but your team will have access to JAMA: https://www.ncbi.nlm.nih.gov/m/pubmed/27583808/

    https://www.ncbi.nlm.nih.gov/m/pubmed/26695736/?i=2&from=/27583808/related

    https://www.ons.org/intervention/cryotherapy

  38. Nerd of Redhead, Dances OM Trolls says

    L-glutamine was a major component in the high amino acid supplements after the Redhead underwent debriding for necrotic tissue. As was said above, no real problem tolerating the supplements other than taste.

    For mouth sores (cold sores), the Redhead read somewhere where L-lysine was a short term cure. It is available in the nutriceutical section of drug and health food stores. IIRC, four of the large pills twice a day, then taper off a pill at a time with twice daily dosing until zero pills are reached. It’s an essential amino acid, so no real toxicity. She swore by it, but without a placebo and double blind trials, I withhold judgement.

  39. davidwarman says

    Caine: thanks for your blogging about this. I did not realize until now that I need to talk about my situation too. I hope you don’t mind me doing some of that here. Just need to say it, with a realistic audience. My wife has a caregiver group that she says helps -- at least, she surprised me recently telling me that since we love living here for so long she wants to spread my ashes over the yard -- but I don’t have a patient group.

    I was diagnosed in July 2016 with Late Stage (no number??) metastatic clearcell carcinoma, cancer of the kidney. 15cm mass on my right kidney, 10% growth left kidney, both adrenals involved to where they are not sure either can be saved, several 1.5 cm metastases in both lungs, and (found belatedly) a large tumor inside my T7 vertebra, throttling my spinal nerves and giving me phantom pains elsewhere.

    The thing I find most notable in all the stories I read is nobody talks much about the side effects. Other than the T7, the actual cancer remains asymptomatic. But the side effects?!?! Colo-rectal impaction that also damaged my prostate. Drugs for managing both now in my daily regimen. Accident at work after getting The Phone Call, stitches in my thumb-web. 105.5F temp with what was eventually diagnosed as Flu A, 10 days in hospital, included a nice dose of sepsis, lost 10 lbs. Discovery of the T7 incursion followed rapidly by radiation therapy for it, but with the complication of a bone-loss enabled compression fracture of my L4 vertebra the night before having to lie on the trillium table for 10 days sessions. Couple of weeks of pneumonia (and another 10 lbs gone), followed two weeks later by a “broken heart syndrome” heart attack (yet more daily meds to avoid a repeat). On my third try at chemo, an oral one, since April, that after a few months has gifted me with unpredictable urgent uncontrollable diarrhea (another 5 lbs so far, have a prescription that may be beginning to help), but at least has begun reversing tumor growths (about 10% compared to intial diagnosis scan). Need more so am living with this one -- currently considered inoperable because of how much tumor material there is the surgeon does not have enough room to cut. Trouble is, this also is negatively impacting post heart attack PT so I remain weak as well as homebound. Oh, yes, last couple of weeks I’ve been passing a kidney stone. From what I thought was a necrotic kidney, Turns out it is still working, under its mantle.

    I expect something like one of the above will get me first. The Flu, the impaction, the pneumonia, and the heart attack, all came pretty close. L4 earned me a disabled parking tab. All just suck the energy out. And I see friends very infrequently; Visits always invigorate me, but only had maybe 4 last year. I’m guessing they need your lessons on how to not treat me differently.

    But there are some things still working for me. I’m a programmer, and my employer is supporting me working from home with great health package, and I have Time Blindness as a “gift” of my ADHD which seems to cancel out any future anxiety, and I have had a wonderful life (70 now) so I have no stresses (that I can detect) from anticipations or regrets. The wife, not so much. I worry for her. I’m kinda hoping I pass still in the saddle -- she’ll really need that life insurance. But idly, not really going to do anything about that.

    Thanks for listening. I apologize for not having words for anyone else yet, I’m not very good at this myself. But I both know and don’t know your travails, everyone is different.

  40. says

    Davidwarman @ 43:

    Hallo, David! Oh, please feel free to talk all you want. It’s not only hard to talk about cancer, but when you finally do, most people don’t want to listen.

    The thing I find most notable in all the stories I read is nobody talks much about the side effects. Other than the T7, the actual cancer remains asymptomatic. But the side effects?!?!

    Oh, side effects. Yeah. My friend who is going through colon cancer treatment and I had a good talk about that. No one wants to talk side effects. You get “everyone is different” blah, blah, and then when you bring something up, you hear “oh, that’s typical.” Enough to drive you mad. I’m dealing with “backed up to the throat” constipation right now, so do I ever sympathize.

    And I see friends very infrequently; Visits always invigorate me, but only had maybe 4 last year. I’m guessing they need your lessons on how to not treat me differently.

    I am really sorry to hear that, David. People tend to forget you still need contact, and the same things you always needed; and unfortunately, the sicker you are, the further and faster they run away. You are always welcome to hang out here, and you can complain, yell, and talk all you like. *All the hugs* for you and yours.

  41. says

    I know that lysine helps some people with cold sores, but it’s never done anything in particular for me; I expect it’s different from one person to the next. I’ll get an order in for viscous lidocaine next week.

  42. square101 says

    Hi Caine, I hope you don’t mind if i pile one with my story. Cancer is something that is hard to talk about, my wife has been the most amazing person possible and I can talk to her about everything but it is still nice to talk to others. I’ve never been particularly good at talking to any of my friends but my wife about heavy stuff and cancer makes it that much worse.

    My cancer is very different than either yours or David’s, I had (hopefully past tense for a long time) a 7x4x4 cm chondrosarcoma on my S2 vertebrae that sort of climbed up the side of the S1. With this cancer, chemo is not effective, the cells don’t divide fast enough for it to be of any use which I guess is a curse and a blessing. It meant that the whole thing had to be removed surgically and since they can’t clean up any microscopic remnants later with chemo they have to take it all out in 1 piece with a boarder of healthy tissue around it. Basically if the surgeons leave behind a single cell it will grow back in the same place and the 1st operation is the only shot you have at a cure. They can use radiation to help and I was very lucky in that my graduate student union bargained to get us amazing health insurance and my wife and I were able to travel across the country to Boston to work with a team of specialists. They gave me 2 weeks of photon radiation and 3 weeks of proton radiation to kind of sterilize the tumor and make it much less likely to leave anything behind to grow into a new tumor. I was able to tolerate the radiation well since I hadn’t had any surgery yet and I wasn’t on any chemo. I’m glad I was able to be able to spend some of the last few months before surgery in such a walk-able city with my wife since it is difficult to walk much now with out getting exhausted.

    In December 2016 an 26 I had a total sacrectomy, removing all of the bone of my spine below my pelvis. It was a 2 day surgery that required me to stay in the hospital for 4 weeks and then 3 more weeks at a rehab hospital before I could leave. They had me on a special bed full of sand with air blowing through it, it makes you sink in and moving around is really difficult. It was to help keep any tension of pressure on the wound site since it was basically right at the top of my ass crack and normal beds would stretch it not allow it to heal well. The surgery meant removing all the nerves that control my bladder and sphincter so I have an ostomy bag on my left side, have to wear depends and a leg bag to catch all the urine that leaks when i squeeze my abb muscles and I have to use a catheter every morning and night to make sure my bladder is completely voided. Much to both my and my wife’s dismay it also means that I have absolutely no feeling in my penis and require an injection of a drug cocktail to produce and erection. Its been almost 2 years since my diagnosis and a little over a year since I got out of the hospital from surgery. My whole body from my lower back down generally aches all day long except for the 2-4 hours that the pain meds they give me are active. I walk with a cane now for short distances and if I need to walk far I either have to use a walker or more often just get dropped off. Its been a really rough year with good days and bad days. I get sad a lot more than angry really, from silly things like seeing people walk around normally in a commercial. I saw a therapist for a few visits for my chronic pain but it didn’t really seem to do much for me.

    About the why question, I honestly felt comforted by the fact that my chondrosarcoma was just a 2 in a million shot. As a chemistry graduate student I spent the first 3 months reading all the research papers I could and it was comforting for me personally to know that it was just a genetic fluke and it was literally impossible for me to have done anything differently. Not that cancer is anyone’s fault but it kept me from driving my self crazy with what ifs.

    I’ve personally found that looking for silver linings to my situation makes me feel better. But these are of course things that I think of my self or that my wife mentions, needless positive thinking from people who don’t know what I’m going through is awful. I’ve been lucky that my friends have treated me pretty normally since the diagnosis and I haven’t had anyone telling me to buck up or that things happen for a reason. If so tried to give me or my wife any of the latter they would be at the receiving end of a pretty good shouting session.

    My 1 year out of the hospital appointment was earlier this week and the MRI and CT scans they took were all clean so that is good news. I never think about those appointments until right before them and then the reality that they don’t have to be clean and that they could show something new kind of smacks me in the face. Its made me a bit more contemplative this week so it is nice to have somewhere to talk, thank you for posting about this.

  43. says

    square101:

    Hi Caine, I hope you don’t mind if i pile one with my story.

    Not at all! I’m happy to see more people, and it’s good to be able to talk freely about it all.

    The surgery meant removing all the nerves that control my bladder and sphincter so I have an ostomy bag on my left side, have to wear depends and a leg bag to catch all the urine that leaks when i squeeze my abb muscles and I have to use a catheter every morning and night to make sure my bladder is completely voided. Much to both my and my wife’s dismay it also means that I have absolutely no feeling in my penis and require an injection of a drug cocktail to produce and erection. Its been almost 2 years since my diagnosis and a little over a year since I got out of the hospital from surgery. My whole body from my lower back down generally aches all day long except for the 2-4 hours that the pain meds they give me are active. I walk with a cane now for short distances and if I need to walk far I either have to use a walker or more often just get dropped off. Its been a really rough year with good days and bad days. I get sad a lot more than angry really, from silly things like seeing people walk around normally in a commercial. I saw a therapist for a few visits for my chronic pain but it didn’t really seem to do much for me.

    Jesus. I am so glad you have your life, but at such a price. It sucks, it just fucking sucks. Pain is serious problem here -- I’m a spinal pain patient, and now with the added cancer pain, oy. There’s such a fear that someone, somewhere, might actually be happy because they are pain free, well, can’t have that. So you end up with meds that don’t do much, and they sure as hell don’t do it long enough.

    My first chemo session turned into a train wreck, my ostomy is screwed up, yadda yadda, and I’m going to be screaming my head off for meds adequate to the task on Wednesday.

    You’ve been in the wars much longer than I have; I’m just starting. At this point, I’m more angry than anything, but yeah, the sadness hits too, especially when it comes to my partner. He only told me the other day that after the diagnosis, while I was still in hospital, he came home and reached out to two people he works with who have both dealt with colon cancer, and he had the full meltdown, crying, all that. Things like that make me so endlessly sad.

    I’ve personally found that looking for silver linings to my situation makes me feel better. But these are of course things that I think of my self or that my wife mentions, needless positive thinking from people who don’t know what I’m going through is awful.

    Yeah, we do that too, and we have our own warped sense of humour, which helps a lot. You have to do that, really, because the other option is despair. That doesn’t make me less stabbity over smiley faces and such. :D

    Please feel free to talk here any time you like. I’m a bit of a mess right now, but it won’t be all that long before the next chronicle, and there’s an open thread here, and you are more than welcome.

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