I feel funny writing this this because I feel like I’ve said and written so much about my mom’s cancer diagnosis and fight over the last year. Yet people still don’t get it. Cancer, I mean. And in all fairness why should they? Is it because by 2010 cancer will be the leading cause of death around the world? No, it’s much more mundane than that. You should get it because cancer has touched someone you know or someone you love, maybe even you.
There is a lot that people don’t know and understand about cancer. I thought I knew a lot about cancer. But until you or someone you love more than life itself is battling it, you don’t know shit. For me, that person is my mom, and she’s fighting for her life. There is still so much I don’t understand about cancer, but what I do know is out of a need to support my mom. And while the cancer hasn’t invaded my body, it has taken over my life. I won’t speak for other caregivers, but right now, my life revolves around my mother’s cancer. Everything else comes second, third, fourth, etc. From when I go to work (or whether I go to work at all), to whether I go home at night to see my husband, to how much I eat or I sleep, everything is impacted by cancer. I go to bed hoping for a peaceful night’s sleep, but I worry that my mother will need me, and that she won’t be able to sleep. I keep my cell phone with me at all times now, taking it to the bathroom, putting it by my head when I go to sleep in case something happens. This isn’t a rollercoaster. No, it’s more like a see-saw. The ups-and-downs are fast, constant, and sometimes even vicious.
It’s traumatic. From diagnosis through treatment and recovery, fighting cancer is harder than anything I’ve ever known. It’s not any one thing, it’s everything. Every blood test, rude staff member, doctor’s visit, and new medication just adds to the strain. It takes a toll on your body which forgets how to sleep or eat normally. It wears out your heart, which feels like it’s shattering into thousands of pieces, and just when you think you’ve collected all the shards to put it back together, it breaks again. It fucks with your mind. You struggle to hang on to thoughts, put thoughts into words. You fight for sanity in the midst of emotional chaos. And as much as people try to understand, empathize and support you and what you’re going through, they can’t. Cancer is its own world, and it can feel pretty lonely here.
Self-care. People are constantly saying, “Take care of yourself.” But what do they mean by that? I mean, I assume that they are well-intentioned. And yet, that “Take care of yourself” always leaves me puzzled. First of all, I’m not convinced people mean it when they say it. It’s filler, just something to say, like when people ask you, “How are you?” and you say, “Fine.” It’s a ritual. You know what you are supposed to say. That doesn’t mean you mean it. The other issue is that one person’s idea of taking care of yourself may be different from what you really need to restore yourself. For me, sleeping in my bed, being with my husband, spending time away from my mom, not carrying my cell phone around with me at every moment would all be ways of taking care of myself. Yet if I said that out loud, people might judge me and think I’m selfish. And really, what right do I have to ask for those bits of self-preservation? Finally, if I’m going to be honest, how can I possibly take care of myself when my mother’s fighting for her life? If I really did what I needed to take care of myself, I would have little left over for my mom right now. And frankly she needs me more than I need me.
Then there’s cancer fatigue. You are tired of thinking about it. People are tired of hearing about it. Mom is tired of dealing with it. We all just wish it would go away. Everyone is exhausted from months and months of providing physical and emotional support. We are desperate to regain some normalcy, but cancer is that elephant in the room that won’t be ignored. So what do you do? I’m not so sure, since this is where I find myself now. I remind myself of how far my mother has come in this last year. I tap into my extensive support network that has held me together all this time. I try to think about things other than cancer. I try to reclaim pieces of my life, the life I created for myself with my husband. And when all else fails, I call my best friend. Her father is in the last stages of his cancer fight. We speak the same language. We understand what the other is going through. We cry. We rage. And then we pull ourselves back together because our parents are depending on us.
So when people ask me how I’m doing or what’s going on, these are the things I want to tell them. Because this is what my life is about now. Cancer.
Thanks for this. I’m the daughter of a cancer survivor, the niece of cancer survivors, and the granddaughter of cancer victims. Cancer is pretty much life for us.
I wish this guy understood what you do. (The gist, for link-resisters: God gave you cancer so you’d worship him. Don’t waste this valuable opportunity!)
My favorite aunt is currently battling brain cancer, and my cousin is spending a lot of time living with her and helping her in her day to day struggles. I told my cousin to take care of herself because so often your individual needs become less important during times of crisis for the very reasons you have described. It can be perceived as selfish, both by those around you and maybe even by yourself, and other things just seem more time sensitive and important.
The way I see it, though, is that a caregiver can be of no use to anyone else if they aren’t recharging their own batteries every now and then. I am a caregiver for a living, and it’s one of the first things we are taught to do. It doesn’t need to be a daily thing, but spending that extra time with your husband, or taking a night to sleep in your own bed, doesn’t only help you but it also helps your mom, because you are in better shape to be a support for her. “Take care of yourself” should mean whatever that means for you, or for anyone else who hears it. Find what for you is self soothing and take even five minutes to do that. You and your mom will benefit.
Thank you for writing this. My father lost his (our) battle against colon cancer a decade ago, and I am always amazed when someone “gets it.” I remember near the end my boyfriend was annoyed with me that I wasn’t available to hang out. (Yes, we broke up not long after that.) It’s very difficult for people to understand, “NO! My only priority right now is my father/mother/sister/brother/partner/etc.” The worst was when my boss wanted me to make up for the work I had missed, as though I had been slacking off and hanging out on the beach and not in the hospital feeding my dad.
People just don’t get it. I honestly don’t want them to get it, because watching someone you love fighting cancer is so terrible that I don’t want anyone to experience it, but then again, when someone else “gets it” it makes you feel as though you have support in the fight.
Valentine, I can’t speak for the writer herself, but it seems to me your advice is the same sort of off-key, well-intentioned stuff that the writer (in her present emotional state) doesn’t need or want to hear. I think I understand where she’s coming from. It’s like, in addition to all this other shit I have to do, I’m also failing to take care of myself!?! Thanks a lot.
Aimee, thanks for a moving post.
Thanks for taking the time to write about fatigue and self care, things we don’t usually read about.This is something I will always keep in mind when I talk to a patient or a caregiver (Cancer or otherwise).
Reply to eruvande:
Can’t find words to describe this guy. Unbelievable! Isn’t using a person’s illness to spread religion illegal? It should be!
I am a cancer survivor myself after being diagnosed with stage III breast cancer at age 38, three years ago. I understand what you are saying about cancer fatigue, when you’ve entered the world of cancer it seems like its everywhere after that.
I don’t know how you feel about giving yourself a break but if you have a friend or family member who might be able to cover for a night the world may look a little different. It doesn’t make you selfish, just human. Best of luck for you, and your Mom.
I lost my mom from complications of colon cancer. I helped look after her for three years.
I get it. Do I ever. It’s been 16 years since she was gone and I remember every day of the last 3 years I had with her.
I hear you about cancer fatigue, Aimee.
When my father was dying, people would call and ask, in hushed tones, How Things Were Going. If anybody said “Not too bad,” we would be greeted with horrified disbelief. NOT TOO BAD? But OMG, he’s DYING. Yeah, we know, but dinner was pretty good, and he’s wrapped up in a blanket watching his favorite movie right now.
Alternately, sometimes when people would ask How Things Were Going and we’d talk about how badly it was going, we were expected to then listen to bullshit platitudes about strength and perseverence. It especially annoyed me to have to listen to lessons on how to cope from people who still had two healthy, living parents.
The takeaway message always seemed to be that we were too overwhelmed or not overwhelmed enough. There was very little middle ground for simply being, well, whelmed.
There is no one right or wrong way to be a caregiver. Sometimes I didn’t brush my teeth for three days, because I kept forgetting. The stress destroyed my thyroid. Sometimes I drank too much coffee. Sometimes I drank too much, period. I have PTSD. Obviously I sucked at ‘taking care of myself,’ but at the time, it was the best I could do. I regret nothing. NOTHING.
Incidentally, after he died, I asked my mother to take “lost his battle to cancer” out of my father’s obituary. I really hate the rah rah FIGHT BATTLE WIN! language associated with cancer. My father didn’t LOSE anything, he died of a disease.
For 6 months, my life revolved around cancer.
For the next 15 years it could, as well, but for different reasons. I won’t let it do so, unless it strikes another member of my family.
It would have been longer, and I would have cherished those moments, but we didn’t catch it early enough, and so when I brought my mother home, my life stopped.
She was not going to die without family around her, without hope in the air, without smiles and fun and the sounds of her grandchildren and great grandchildren
She was 59 when she died.
I did not take care of myself. I took care of her. My children and spouse watched me wither beside her.
I didn’t work, I didn’t clean, I didn’t participate.
Had someone told me to take care of myself, I would have said “and who will take care of her?”
Which of them wold lift her from the bed at the end and take her to the shower? Which of them would help her to get outside, this once magnificent woman who lived ideals these days many only talk about. Which of them would do what they needed to to take care of her.
Even now, 6 years after she passed, her last words so silly she would have loved them, I cannot speak to it, to the depth of where it reaches, and I can’t even do this superficial talking without the lump in the throat and the tears in the eyes.
IT is not the same as taking care of someone else, this family thing. You cannot do it in bits and in pieces and yes, Aimee, I do know how hard it is to talk to others about it.
There are some things that are. And some that shouldn’t.
Ellen, I hear you. The only part I don’t agree with is the implication that my statements implied that she is somehow failing by not taking care of herself. I never said that. I only tried to suggest that doing so wouldn’t be a selfish thing and that it may help her in taking care of her mother. I didn’t say one thing was better to do than another, it’s obviously different for everyone. I was just saying that the advice is given so often because it is important. It’s frequency tends to take away from it’s purpose, but it is still something worth considering.
Every person’s experience is intensely personal, and I obviously don’t know Aimee well enough to tell her anything. I just know as someone who puts herself last when taking care of others, I have come to appreciate the rewards of any moment of “selfish” me time and how it helps me and those I am trying to help.
All the best to you and your mother, Aimee.
When I had a non-lethal, relatively easy to cope with thyroid cancer, I got a small taste of what it must be like to be in your situation. What I wished people understood then was that it wasn’t my job to make them feel better about my diagnosis, treatment, and prognosis. I had enough on my plate to deal with in getting better; people who wanted my reassurance that “I’d be fine” just took energy away from me.
In the 22 months that I cared for my wife after her diagnosis, I honestly can’t remember what was said to me about taking care of myself or about much of anything else. If it didn’t have to do with my wife’s treatment or her care or with our young daughter, I did or said whatever I needed to say to end the conversation. I was probably rude or ungrateful to people who genuinely cared about my wife or me. I didn’t give a shit. I needed all my emotional energy to focus on doing what I could for my family
To follow up on Akeeyu’s comment above: I never really understood what “be here now” meant until my wife’s breast cancer. You take every little win. She’s enjoying dinner. She’s keeping it down. Her sleep is restful. No nightmares tonight. The kids (ours were 5 and 2 at the time) aren’t scared. Dryer’s done before it’s time to dress the kids for school. I mean, you take every little win.
Here is how I chose to understand all the people wishing me well, and telling me to “take care of myself.” I don’t know if it’s what they really meant, but I didn’t wish to construe it differently: “We want you to succeed. We will help you if you can think of something for us to do; we will watch the kids, we will bring you food. Ask us for what you need.” Often what I needed was just to greet somebody at the door who was carrying a bag full of individual frozen servings of homemade soup. I can joke about it now; at the time, I really fucking needed that.
My heart goes out to all of you commenting about your loss. My wife’s 6 years cancer-free now, we are well and truly back to the new post-cancer normal. But that’s another comment thread.
Your honesty is refreshing Aimee and is one of the many things I admire about you. You speak your truth, from the gut, and don’t apologize. This post made me cry.
My mother died of cancer Aug. 9. Her last few months were brutal and hellish, and, in some ways, cancer still runs my life. When you’re a caregiver, you’re not allowed to admit, “I don’t want to do this anymore.” You’ll still do it, of course, but people think less of you if you admit that the person you’re caring for really is a burden, no matter how much you love them.
I love and miss my mother every day, but caring for her near the end was exhausting, and I’m glad it’s over.
I’m really sorry to hear about your situation, aimee. I’m a cancer survivor, and so are my mother, my father, my aunt, and my cousin. I have an aunt and an uncle and a friend who didn’t survive it. We call living with it “living in CancerLand” and it sucks.
I’m going to go out on a limb and guess that what people may mean when they say “take care of yourself” is “I’m sorry, I hope you’re doing OK, I hope your mother is doing OK, I wish I could help”. If anyone offers to help, jump at it and give them a specific task. I found that my friends really did want to help but didn’t know what to do. I had friends shovel snow for me, pick up something at the store for me, send dinner over for us, and just bring me chocolate on a really bad day.
Again, I’m really really sorry you have to deal with this.
Yes. And this applies to any debilitating illness, I think. I saw much of the same when my grandparents were dying of Alzheimer’s and dementia.
I wasn’t my mother’s caregiver when she was dying of cancer, so I didn’t have as rough a time as other people here. But I know “Take care of yourself.”
And I know what I meant by it when I wanted to say it to my friend when she was going through the same with her dad. I didn’t say it, I just held her and agreed with the suck and cried with her, but in the moments I wanted to say it — when she would leave me, when she had to get off the phone, when I was going to have to leave her to her own devices for more than a few hours, and I HATED leaving her — I pretty much meant all the stuff people above me have said. I love you, I suck at this but I will be whatever you need to the best of my ability, and when I can’t be there, don’t forget to love yourself and do what you can for yourself because I can’t be there all the time.
Which is stupid. Because that energy, the energy to carve out time for yourself, the energy to take down the walls and then *put them back up* afterward, it sometimes isn’t there. Sometimes what we need most is not something we can have, under the circumstances. People are too hard on themselves, yes, but there are times when it’s more important to put your own needs aside and focus on someone else.
It’s not a failure to tend to your own needs. Neither is it a failure to leave your own needs untended while dealing with someone who desperately needs you. And “Take care of yourself!” can often feel like an accusation or a command: here is this other thing, seems impossible right now, that you have to do. Here’s these other expectations. Take care of yourself so there will still be some of you left for us to interact with. Take care of yourself so that you don’t change too much. Take care of yourself so your problems don’t get so bad they start scaring people around you. Take care of yourself so your grief doesn’t get too unseemly. And while I think some of that selfishness IS inherent in that utterance, simply because people fear having to deal with this sort of thing even secondhand, I don’t think those elements are the most important part of it. It’s just that when you’re in that place, those elements are the ones you tend to hear. Your life is fucked. Being reminded that other people know this and wish it would change is heavy and painful. They can’t possibly want you to be taken care of more than YOU do, you know? There were times I wanted to say “I love you too. Now shut up. Talk about video games for Christ’s sake, or carnivorous deer.”
Something people don’t “get” about this crap is just how draining it is. How the spare change necessary to translate well-intentioned but poorly-aimed words, and to extract the emotional content out of what at the moment seem like truly meaningless phrases, will nickel and dime you with exhaustion. You get tired, so tired it’s hard to react to what people meant and not what they said. Especially when we aren’t, culturally, taught to deal with issues like this with any grace at all. You learn it by force when you go through it, but that doesn’t teach the people you come in contact with every day a damn thing, and they will continue to act like people who don’t get it because they DON’T get it. I didn’t get it until Mom died, and now I *maybe* get a tenth part of what it must be like to lose someone I was really close to (we loved each other but were not friends, and I wasn’t her caretaker).
One of the hardest things to learn, whether the crisis you are dealing with is a sick or dying loved one or your own mental illness, is to ask for what you need. It’s a peculiar variety of . . . shedding shame, I guess. You have to stop caring to some extent about the social niceties that say you shouldn’t ask people for things, you have to stop fearing being in someone’s debt, you have to learn to trust others — a hard lesson, if you aren’t a trusting person by nature. You have to learn to expose your own weaknesses and trust your support network to help you shore them up. And even the best team of emotional contractors can only do so much. This shit wears you down. It ages you. It subtracts from every part of your life. And that toll is something that people who have not experienced it cannot ever really understand.
I don’t know you, Aimee, but I salute you. Sorry I wrote you a novel.
This was a really powerful post, Aimee. I don’t have anything of value to add to the discussion, but this was an honest and refreshing read.
I get it. Not on the same, caregiver level that you do, Aimee, but I get it.
I lost my Ma to complications of liver cancer when I was 13. She got sick when I was 5 or 6, so that entire chunk of my childhood was a round of Ma getting chemo weekly, being sick for several days, then having a good day or two before she had to get the chemo again. This was the 70s, so the chemo was no-holds-barred, un-targeted, downright evil stuff. She took it orally until she couldn’t drink down the Coke/Diet Coke and chemo cocktail anymore. It affected my whole childhood.
My dad was diagnosed with cancer when I was in high school. This time, I wasn’t told until I got rebellious. (Long, stupid, adolescent story. Suffice to say, if they had TOLD ME about his cancer, I wouldn’t have argued the point.) The radiation was tough on him, but he survived it. And went on to develop a form of leukemia many years later. When he died, I was 37. And suddenly an orphan. My step-mom is still here, but no one who hasn’t gone through it *gets* it.
I get it. When I say to people “take care of yourself”, I mean it. Take the *1 hour* to take a bath, or have your spouse rub your feet, or eat a real meal or take a nap. If you run yourself into the ground, then who will be there? It is NOT selfish — it’s a necessity so that you don’t break. And when people say that to you, take them up on the implied offer of support. Tell them “I’d love to have an afternoon to just get caught up on things here — could you take the kids?” or “Could I ask you to help me do some advance cooking/bring me some ready to go meals once or twice a week? That would really help.” You know, the stuff people would offer to do if they knew what you needed.
My best wishes go to you and your mom. Cancer is a horrible thing that consumes your life. Hopefully all of the positive vibes your post is generating are worth something.
First, I want to say thanks to everyone who read, commented, email, tweeted, about this post and about cancer in general.
Life has been better for my Mom these last few weeks. We made the decision (with her support) to provide her with round-the-clock home care. After months of my aunts, cousins, my mom’s partner, and I taking turns at the hospital, at the house, we realized we were coming to the end of our collective emotional strength. It was best for Mom’s recovery and for our well-being. That said, there still was some guilt in not being there with her all the time. And I’m ok with that. When I need to be with my Mom, I’m there. When I need to be home, then I’m home.
The challenge is in dealing with others who don’t get it, who don’t see that you’ve run yourself into the ground. That you’re hanging on by your fingernails. I’ve definitely seen the best in people through this, and sadly, the worst in others. And I’m becoming okay with that, too.
As for my Mom, this week she told me she’s ready to visit my brother and his family in Florida, including her newest granddaughter. So, there may be light at the end of this tunnel, yet.
“For me, sleeping in my bed, being with my husband, spending time away from my mom, not carrying my cell phone around with me at every moment would all be ways of taking care of myself. Yet if I said that out loud, people might judge me and think I’m selfish.”
I wouldn’t. Not for a second. When I say take care of yourself, to a friend I mean do those things exactly, that you need to do those things in order to be there for the person that you’re caring for. I also mean that if you want to vent at the unfairness, at the anger, the feeling that you can’t take it or that you shouldn’t have or that you want give up, and even that a little bit of you thinks that it would be better if it was over with. And if you said something that shocked me, I’d keep it to myself. As someone who cares about you (and doesn’t necessarily love your mother, who isn’t your sister, or her sister), that’s what I’m there for.
I don’t know Aimee, but if I were her friend, that’s what I’d mean.
Thank you so much for this wondeful post! My mom is getting bilateral masectomy tomorrow. It has been very difficult because my dad is deployed and I am currently in college three hours from my mom. I feel so isolated and alone sometimes because it seems nobody truly understands, so this post made me feel connected and not so lonely.
My grandfather is currently dealing with a brain tumor, and it’s one of the most stressful things I’ve ever experienced. Every time I get a call from my mom I’m scared of what she might tell me. You’re constantly on the edge of your seat worrying.
Thank you so much for sharing.
I’ve lived with cancer for over seven years. My partner has been through all of the ups and downs that several of the others here have mentioned. I was blessed to have someone who was willing to devote every waking moment to making sure that I was as comfortable as possible, given the circumstances. I never went to a doctor’s appointment or radiation treatment where he wasn’t right there with me or right on the other side of the door, waiting to help me back into my clothes and get me safely back home. When I was hospitalized, he spent every night with me, watching over me, making sure that pillows stayed at the right angle and keeping track of who came and went and what they did to me.
The only thing I wish was that he could be convinced to get out and spend more time doing things without me. I wish I could get him to understand that it’s okay for him to enjoy doing something that I might not be able to do with him.
I really appreciate you sharing your story, Aimee. I can only imagine what you, your mother and the rest of your family are enduring at the moment. I was very moved and touched by your story, having a father who has been treated for carcinoid tumors in his stomach. I think it was some time before he acknowledged that he had cancer, and is a cancer survivor. We were riding in his car this past July, and, he shared with me what was then his annual follow-up appointment to the oncologist. About once a year, my father has to have blood tests and CAT scans to check up on things, and it is always an anxiety-ridden time for me, for I am a worry monkey. Anyway, I can relate. You, your mother and your family are in my thoughts and prayers.
[...] What I Wish People Knew About Cancer – a frank & in-depth discussion of what it’s really like to live with cancer long-term. It ain’t all pink ribbons & hope. [...]