I don’t know if I can explain this one. I’ll do my best. From the start, you’re inundated with information and a storm of paperwork at a very fast rate. If you’re someone like me, knowledge is good, it provides a foundation to anchor yourself on, but even then, you’re in a situation where this is all coming at a furious pace right after diagnosis. While a part of you is still struggling to process what this is going to mean, in terms of your life, your self, the rest is trying to take all this information on board. A good deal of it penetrates and makes it through, punctuated by periods of what my friend describes as bluuuuuuuur. Those punctuated periods are a very good reason to be sure you have someone with you who can act as advocate; another brain to absorb information, to scribble notes, record, whatever. Later, this acts as an excellent check: “Did they say…?” to get confirmation of what you think you heard. For myself and a lot of others, the shock has not yet set in, but when it does, it tends to fuck your memory up a tad. In the meantime, the information keeps flowing at a fast rate, every time you’re back in for a couple of weeks.
For me, there was the draining task of looking up every single cytotoxin I was going to be given. There were the pages and pages of side effects, finding out what the hell Urea Cream is and where to get it, in case of Hand-Foot Syndrome (Palmar-Plantar Erythrodysesthesia), and so on. (My thanks to my friend for all the info on the cream.) There’s a vast need to be prepared, JUST IN CASE looms large in Cancerland. While you find yourself preoccupied with all the intricacies and complexities of Cancerland, long before you realize it, there’s a whisper of a cocoon being woven about you. A cocoon of isolation. There’s a part of you which starts withdrawing immediately, but oh so quietly. Takes a while to realize the internal tug.
There’s a tremendous cost in emotional energy when it comes to cancer. The people who love you and care for you develop a low level desperation for normal times, a normal moment, the normal you. It’s impossible to not respond to that need, even when it costs you. Many of the people who surround you need to feel needed, and that includes most of your medical folk, and there are times it feels too much to even acknowledge them. Right now, my medical people regard me as knowledgeable, witty, and engaging. There is one hell of a cost to finding that person, forcibly fishing her out, and donning her for the benefit of others, especially when I feel so…lacking, in everything. That’s when you start finding it easier to simply sink inward, into isolation. You do feel very alone in treatment, because as much as people might love and care for you, they are not in your situation, and you don’t gain a true understanding of treatment unless you get to be in it. That’s even so when it comes to all the medical people who deal with cancer patients every day for years on end. Because of that, I think withdrawal into isolation becomes seductive because it seems to be a sort of armor, a protected place, away from everyone else’s needs; away from calculating the expense of answering the needs. There are times it’s very difficult indeed to ignore that siren song, and it always hits you when you are feeling at your most vulnerable, those moments when you think “I can not take anymore.”
This isolation also twines around the closest caregiver, and I cannot emphasise enough how important it is for people to be there for the primary caregiver. Caregivers tend to be forgotten as everyone clusters around the “cancer patient”, but a primary caregiver is also going through shock, and trying to figure out how to cope, and they have all the same information overload and everything else to do. To borrow from the advertising world for a moment, Have you hugged a caregiver today? Or given them a day of respite? Taken them out for a beer or a movie? If you really, really want to be nice to a patient or a caregiver, get a gift certificate for a massage.
ETA: In the comments, Nightjar had this to say about being a caregiver, and I can’t emphasise this enough, either:
Yes, and then there’s the goddamn guilt, which you know isn’t rational but it will creep up every now and then. “Am I doing enough?” “Is there something I could do that I’m not doing to maximize comfort and chances of treatment success?” This tends to get worse when well-intentioned people decide to give “advice”, usually to ask if you’ve been giving enough of miraculously-healthy-food-X or if you’ve been preventing the person with cancer from eating very-unhealthy-food-Y. I know intentions are good, but really, when you hear this kind of thing repeatedly what it begins to sound like is “you are not doing it right”. And you feel guilty because last night you were too tired to cook and just threw a pre-baked pizza in the oven. And it’s all very stupid anyway and it pisses me off because 1) Yes, I already know nutrition is important, my background is in biochemistry, even if it wasn’t, I would have heard it by now don’t you think? and 2) WTF, I’m not caring for a baby, my mom eats whatever she wants to eat and I’m not going to “prevent” her from anything. Seriously, people need to learn that just saying “I’m sorry, let me know if I can help you with anything” is fine and is enough. There really is no need to follow it up with anything if you don’t know what else to say.
Yeah, don’t do that kind of thing. Unless you’re a fellow caregiver who might be able to offer a really good and helpful suggestion, keep your ideas to yourself, please. We all know about pink positive crap, we all know about the diet this, diet that crap – it. does. not. help. Also, in case you might not know, cancer treatment is bristling with nutritionists, that’s part of treatment too. Just as it’s important to remember the person with the cancer is still the same person, that applies to the caregiver, too. Resist turning people into “The Cancer Patient” and “The Caregiver”. Also, as someone who can be world class stubborn when I want to be, I’ll confirm that no, you won’t get anywhere trying to boss someone with cancer around when it comes to food. No one knows better than we do about that, and as I mentioned, there are times we plan to misbehave, and we’re willing to pay the price for it. You go eight months without your favourite food or treat. Don’t want to do that? Neither do we. Another word about diets: specific cancers call for specific diets, there’s no “one fits all”, which is why you have meetings with nutritionists for your particular cancer. If you’re a bystander to all this, trust me: you do not know best about diets. More than anything, a caregiver will appreciate respite, a nice gift, an offer of help, left right there.
I wish I knew how to adequately explain what it’s like to be able to talk with someone who is undergoing the same treatment you are, for the same type of cancer. Weirdly, it’s rejuvenating, because you can just talk. You don’t have to explain anything at all. It’s a different sort of normal; it feels amazingly normal because you can just talk, just as you would about any other thing. It’s Cancerland normal. Unfortunately, I imagine it’s a rare thing. My friend and I are damn neared twinned on every aspect of our cancers and treatment. Being able to talk with her has, to a great extent, kept me in the present, even when I’ve been feeling at my most exhausted and disheartened. I can’t not respond to her, because it’s simply too important to keep our metaphorical hands linked. She is the only one who knows.
This is not to say that all the other wonderful people in your life don’t do anything to help you normalise out, or lift your spirits in a myriad of ways, they do. Every pull out of isolation helps, every distraction helps, every serious discussion, and every silly discussion helps. Stories help. They all help to hoist you out of that internal spiral, because you do love every person back, and you do need them. Everyone who hangs out at Affinity does me good beyond measure; one of my greatest pleasures is how the conversations on the chronicles weave about, full of stories, expansion, humour, advice, suggestions, ideas, and compassion. Being there for someone with cancer is everything. Fucking everything. All that said, there are times when it feels like responding is going to be impossible to achieve, it’s simply a mountain much too high to climb, and you’re out of breath, energy, and the will to continue on. In the end, you do find yourself able to respond, and you slowly realize you feel better for it.
It’s not that we don’t know there’s an end in sight, but that end feels like ——————————————————->, too far out of sight to rely on in any way. The dreary routine of treatment gets to you. The fact that you just start to feel well again is right before you get infused again, that’s a piss and a half, to say the least. I’m right now starting to feel okay again, and chemo is today. Can’t be fuckin’ happy about that one. You have to develop new habits, fluid intake if you’re bad like me; everyone has to adjust their diet. These things truly help, but it can be hard to gauge how much, it often seems they aren’t helping a hell of a lot. The first time you misbehave, and you know we’re all gonna do it, you’ll have that message driven home, usually in the form of something you really don’t want to see, like ramped up diarrhea. I have officially decided that if I get addicted to anything, it’s gonna be fucking Immodium. I literally cannot make a move without it. That’s dependence. :D
That’s all I have for everyone today, I’ll be back late, and probably have another collapse straight into bed when I finally reach home, so FUCK CANCER, KICK ITS ASS, and everyone? Take care of yourselves and everyone else. Take care of one another. And I can’t thank you enough for taking such amazing care of me, you all have my heart.