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.