Adult Knowledge I: The Cancer Caregiver: Column
It's nice to think that when you hit ages 18, 25, 30 and 40 that the parts of your brain that store “adult knowledge” pop open like the top on a can of Pringles and apply themselves to all these new situations, but that’s just not how it is. It's kind of amazing how many things that affect your adult life you never hear of until absolutely necessary, and by then, that knowledge is often too late to be useful. Whether it's because you just aren’t asking the right person, or you’re just embarrassed to ask, there’s a lot of specific knowledge out there that adults need, but just don’t get. I can’t tell you the number of conversations I have with people where someone (usually me) goes, “How did no one ever tell me about that!”
So that’s what this periodic series of columns will address: good specific knowledge about specific situations that someone gave to me, and it's my duty as a fellow adult to pass along. I realize you probably glaze over the header at the beginning on my columns that state that all these words are the writer’s opinions and reflect nothing on Jackson Newspapers and the people who publish it, but I’ll add the caveat that this advice is based on my personal experience, so apply it to your particular situation at your own judgement.
But on to The Cancer Caregiver: if you’ve never known someone with The Cancer, I hope that continues to be the case for your whole life. But statistically, especially in West Virginia, if you don’t get The Cancer, you’ll most likely be a caregiver for someone with The Cancer, so there are some things you can do as a patient’s helper that’ll help make the journey easier on both of you. And the absolute best thing we were ever told when my dad first got diagnosed was, “Be your loved one’s advocate.”
It's important to remember that while you may only know one person with cancer, the doctors, nurses and assorted medical staff that you come in contact with know a hundred people with cancer. And yeah, they have charts, and yes, they do their best to remember your loved one and their current cancer status when they come in for appointments, but ultimately, they’re human, and humans can only retain so much individual information. So the best thing you can do to help a person with The Cancer is to be their advocate. That means you help them take responsibility for knowing their meds, knowing their chemo and radiation schedule and knowing when their body is acting differently than usual and when they need to do something immediate about it.
And if your person with cancer tells you that something doesn’t feel right, you take that seriously and advocate for them. Take them to the doctor, go with them to the clinic or ER and help them voice their concerns to the medical professionals, even if it's something that feels insignificant. Yeah, you might get some push back, and maybe some attitude, but that’s not your concern in that moment: Your concern is for your loved one and making sure they’re getting the care they need, even if it means getting a little pushy.
So be your loved one’s best advocate, help them take responsibility for their care and don’t put that entirely on the medical staff. That talk about cancer being a team effort isn’t just for motivational posters: It really does take everyone to treat cancer successfully. Feelings may get hurt when you advocate passionately for someone you love, but that’s what flowers, chocolates and apology notes are for: You can always say you’re sorry later, but better to make your case that something needs done than wish later you’d said it when it's too late.
My second suggestion to make caring for a loved one with cancer: Get yourself a cancer bag. Now, it doesn’t have to be a backpack: It can be a shoulder bag, a tote, just whatever bag you have that you can designate as your cancer bag. We liked a backpack because Dad could carry it easily and it fit on his wheelchair when he needed one, but get something that’s easy for your loved one or you to carry around. First thing you put in it? A spare charger or two that fits both of your phones/iPads/Kindles, etc., because treating cancer involves a lot of sitting around, and you can only read so many four-month-old “Better Homes and Gardens” magazines.
Second: Keep an updated medicine list in your cancer bag. I can’t emphasize this enough: Do not rely on the medical staff to be 100 percent up-to-date on all your loved one’s treatments, especially if you’re dealing with multiple specialists. If they went to the heart doctor and they put your loved one on a new blood thinner on Monday, the cancer doctor is not going to know that on Thursday’s appointment. So have a list on you always with their current meds and be ready to produce it at check-in, or pack all their meds in a Ziplock bag and take them with you at every appointment. Their medical team will love you for it.
What else do you need in the cancer bag? Things that make your patient content. My dad liked a thermos of coffee, every electronic device he owned (he could operate two iPads at once, a mean feat anywhere) and a wallet with cash in it, because he enjoyed a Starbucks drink from the shop in the CAMC Cancer Center and a Jimmy John’s sub for when treatments were over. Depending on your loved one’s cancer, they might prefer a cold drink or ice cream, or something easier on the stomach than a footlong hoagie.
But whatever they prefer — cold drinks, actual books, what have you — stuff the things that make treatments bearable in the cancer bag. Because there’s nothing worse than realizing they’re having an all-day treatment session and all you’ve packed is a half-dead iPhone and no good snacks. You’ll be making a very quick run to Southridge for supplies if you don’t.
What else do you need if you’re caring for someone with The Cancer? Sympathy. Not empathy: Empathy means you know what they’re going through, and unless you’ve had The Cancer, you just don’t, no matter how many people you know have had The Cancer before. Because no matter what a cancer patient tells you they’re feeling, understand that they feel worse than that. Their level of tired is worse than you think, their level of pain is worse than you can see and what’s happening to their body during treatments is unfathomable to both of you.
So the best thing you can do is be sympathetic: If they tell you they’re tired, they mean it, so let them nap. If they tell you certain foods don’t taste good anymore, ask them what they want (my dad loved sweets, and a lot of cancer patients do, so keep a supply around for them whether it messes with your diet or not), even if what they want is a foot-long Jimmy John’s sub that you have to go into downtown Charleston and illegally park for. And if they tell you they don’t want to see anyone, they aren’t being anti-social; they really don’t feel up to it.
If you also feel like they’re being moodier than usual, or more emotional that usual, remember too that they probably are taking a steroid treatment and those things mess with their emotions big time. Your sweet grandma who wouldn’t raise her voice to you, ever, might yell at you in the middle of Sunday dinner that you’re a horse’s butt, but do not take it personal! Grandma still loves you — that’s just the steroids talking. Keep reminding yourself of that, on the days when it gets hard, when you feel like your loved one isn’t cooperating or is just being mean. Remind yourself that it’s not them, and when they’ve stopped treatments, they’ll be back to their sweet selves, and don’t make them feel bad about something they couldn’t control.
And some really important advice for a cancer caregiver: Step away from caretaking when you need to. Cancer is a journey, a long one, so pace yourself. If you don’t have to do it all — be at every appointment, treatment, blood transfusion, etc. — use your tribe, because they want desperately to help you, even if it’s as simple as dropping someone off at treatments so you don’t have to make multiple trips in and out of Charleston or Parkersburg in one day. Take some time away when you need it and keep doing the activities that you love when you can, so when you come back to help again, it's with a refreshed good attitude.
Oh, and every opportunity you can, be a really good cancer caregiver and help your loved one take advantage of their cancer perks. That’s when, in the face of an obstacle you’d normally never overcome without supreme effort and time, you look at the person who is holding up your day in the eye and very quietly and somberly say, “(Insert cancer patient's name) has the cancer,” then wait while said person starts apologizing and begins moving heaven and earth to help you.
Look, I’m not saying it's right, but cancer perks are the few things in your loved one’s life that makes having The Cancer bearable, so you might as well help your loved one use it to their full advantage. We liked to use our cancer perks for good parking and cutting through governmental red tape, but you pick the perks that suit their lifestyle. Because a loved one who is fighting The Cancer deserves all the love and support you can give them, but if you can also get them out of going to events they don’t want to attend or park illegally for sub sandwiches? Well, you just won Best Cancer Caregiver Ever, didn’t you?