The phone rings. You open an email. You sit at lunch with a friend. Wherever it happens, someone tells you they have cancer.
Cancer. What a suck-fest.
You, of course, are stunned. You, probably, are scared. You, understandably, have exactly NO idea what to do. So, for some reason, you email me. And I get that. I've never been short an opinion, that's for sure. But I have to say, I've been surprised to get the question so much. I've had cancer, sure, but I am not, in any way, an expert on this subject. So the question, "What do I do for So and So who has been diagnosed with Such and Such cancer?" throws me. My short answer is – I don't know what you can do for So and So. But I know that answer is as helpful and welcome as a fork in an all-soup restaurant – on broth day. And I also know doing nothing really shouldn't be an option. So in the hopes of giving you something to do and in the vein of "if you throw enough stuff against the wall, something's gotta stick" (which is the same logic I use for a lot of my humor) here is a list of practical things to do for your recently diagnosed So and So.
Oh and if you're So and So and you've recently been diagnosed, I'll post a separate list of things you can do for you. (as if you don't have enough to do already).
So here it is, JENNE'S INCOMPLETE LIST OF PRACTICAL THINGS YOU CAN DO WHEN A LOVED ONE HAS BEEN DIAGNOSED WITH CANCER
1) Dump all your expectations about how the So and So should or will act.
Cancer's a weird one. It brings out the best and worst in people and different people will have wildly different reactions to it. It's sort of like onions. But not as tasty. Don't assume the newly diagnosed patient is terrified for their life. But don't assume they aren't. When the diagnosis comes it brings with it a flurry of activity – the to do list grows by the moment and fills quickly with appointments, tests and surgeries. What this means for the patient is he or she has very little time to think and he or she probably has a feeling of "doing something about it". This can make the patient feel empowered – they are taking this thing head-on – or it may make them feel overwhelmed. You have no way of knowing … heck, they won't even know how they feel. Just be ready to be hit with any and every emotion. And don't judge. And don't force. And don't assume. I said that already. Just don't.
2) Buy a blanket.
Chemo is cool. Meaning it is freakin' freezing in the chemo room. In addition to the chemo room being cold enough to hang beef remember the patient is being pumped full of cold fluids. Bag after bag of drugs and saline are pushed and dripped through an IV line or a port into the patient's body. These fluids aren't warm. In fact, it can feel like someone is shoving a popsicle into your chest. The result is you spend hours being a Chilly Wilikers. So a blanket comes in handy. A erupting volcano or a star going nova would come in handy too but that's less practical. Most chemo rooms will have a closet full of blankets the patient can use – but come on … you know how that goes. Those blankets are death white, have been laundered about a ga-zillion times, are scratchy and often holey and just plain miserable. So I think one of the best things you can do for someone going to their first chemo appointment is buy them the softest blanket you can get your hands on. Target usually has some good ones that meet all my criteria: Soft. Inexpensive. Not too big. Soft because who wants a concrete blanket. Inexpensive because you'll want to include a note with the blanket telling the person that they should feel free to throw the blanket away when they are done with chemo – after all, you only spent a few dollars on it. (Now between me and you, you can spend whatever you want, I just want to make sure the other person doesn't feel like they have to hold on to it forever. Because truthfully, that blanket will always bring up chemo-memories and no one really needs or wants chemo anything once chemo is done.) And not too big because a big blanket gets unwieldy and can turn into a hassle. And take it from me, there's enough hassle what with the cancer and all.
3) Get friendly with snail mail
Emails are great. Phone calls are nice too. But there is nothing – NOTHING – like getting a card with a hand-written note in it in the mail. My suggestion is to go buy a few cards and address and stamp them all. Keep them around and every so often pick one up and write a note inside and stick it in the mail. Don't underestimate the power of this. I have a container that is shoved full of cards and letters I got. Sometimes in the middle of the night I would shuffle into the other room and sit in dim light and read through these cards. It's always the middle of the night when things are the hardest and things feel the bleakest and the night looks the darkest. Reading those cards gave me more than comfort. They gave me a reason to pad softly back to bed and try to rest. Side note here … I don't think I ever responded to any of these cards. So to all of you who sent them – thank you. You saved my life.
4) Don't expect a thank you for the cards you send
I just added this one after I wrote that last line.
5) Nix the perfume
When going to visit your patient please be careful of strong smells. Chemo stinks, literally and figuratively, and it makes other stinks stink more. I became extra sensitive to smells when I was going through treatment. Anything with a strong odor had to be eliminated from my world – this included bacon, coffee and perfume. (If you wear bacon-coffee perfume you may just want to rethink visiting your patient at all.) If you live with your patient, get used to buying unscented everything. If you are stopping by for a visit, please don't wear perfume or strong-smelling deodorant (unless you yourself are strong-smelling then I guess the deodorant is the lesser of two evils). If you are a best friend who plans on seeing your patient regularly, I suggest you stop wearing perfume or using strong laundry soap and fabric softener for the few months your patient is going through treatment. It will be worth it when So and So doesn't cover their mouth and run for the bathroom when you hug them.
6) Create a binder with envelop pockets
You'd be amazed by the amount of paperwork that cancer brings with it. You'd also be amazed by how little of it you want to read when it is handed to you. This doesn't mean, however, you don't want it. When I was going through chemo, my sister made a binder for me. That binder included all kinds of sections – one for symptoms, one for information, one for test results and others. The binder was awesome. Even better, it had envelop-type pockets in it so I didn't have to three-hole punch anything. It was great to be able to shove all the paper work I got into that binder. It was awesome to have it. It helped me feel in control of things in the beginning when things felt very out of control. I will say this, however, I didn't use all the sections in that binder. I remember there was a section for keeping track of the questions you may have and the answers you get. I never used that. I also just remembered that after about the 4th treatment I stopped taking my binder with me. I'm not sure why. I loved that binder.
7) Don't expect your patient to use the binder
I just added this one after writing that last line.
8) Don't ask, Just do
Feel like making dinner for your patient? Do it. See a soft pair of slippers and a robe you think they'd like? Buy them. Think they might like to have their weeds wacked or their yard raked? Wack and rake away. I guess my point here is, don't ask for permission. Because if you ask, your patient is going to say they don't need dinner, have enough slippers and like the leaves right where they are. And all of that might be true but also true is the fact that you need something to do so you can feel like you are helping and even though cancer patients are a usually proud lot, we still think it is pretty cool when you show us you love us in little practical ways. And if you just can't bear the thought of doing something without permission then maybe just give the patient a choice … sort of like "I'm making dinner for you, do you want chicken and chives or rice and beans?" or "We're on our way over to rake your leaves, do you want us to bring ice cream as well or not?" and "I have something for you! do you want me to bring it by before or after your appointment tomorrow?" See how that works? Oh, one thing you should ask permission for is a visit. Just make it sound palatable like "We'd like to see you and we're on our way to the movies, can we stop by?" that way it doesn't feel like you are making a ton of effort and the patient will be more likely to tell you No if they need to tell you No.
9) Drop by, but leave already
Nothing wrong with a drop by visit. But there's nothing wrong with leaving either. If you have to use the bathroom while you're there you've stayed too long. Enough said.
Sam and Julie used to stop by after every chemo treatment. They'd come over. They'd sit. We'd do a jigsaw puzzle. I was always hopped up on the steroids I got during a treatment and for the first 12 hours after a chemo appointment, I'd be one big ball of mouth. I'd talk and talk and talk … about chemo, about cancer, about carrots and underwear and house payments and hockey pucks. I'd talk and talk and talk. And while I talked they'd listen. Sometimes we'd all laugh. Sometimes we'd all cry. Sometimes they'd ask questions. Mostly they just listened. I can't describe how healing it was for me to talk and have someone listen – judge free, advice free, expectation free. I think you should do that for your cancer patient. I think you should listen. You remember how to do that, right? Pretend it isn't a discussion – pretend the patient doesn't want your advice. Pretend you are watching a movie, or a monologue. Pretend whatever – just do what it takes to listen … really listen … to the patient. And don't even think you have the answers. You don't. So just listen. It is one of the best gifts you can give someone.
11) Don't forget the support person
So here's the deal … when you are going through treatment, you get lots and lots and lots of attention. People make you dinners and send you flowers and run up to you in the mall and ask you how you are doing. Your email box gets jammed full of well-wishes. Your fridge can overflow with casseroles. Your drawers get stuffed with soft slippers and cozy PJs. People want to know how you are doing, how you are feeling, what you are thinking. And all this time, they are going to look right past that main support person – never asking how THEY are. Never wondering how THEY feel or what THEY need. And let me let you in on a secret here – the support person takes the brunt of it. In my case, The Hub was the target of my discontent so many times. The Hub held my hand in the chemo room and my head when I was feverish and achey. The Hub cleaned up the vomit from the car and kept the house smell-free. The Hub ran around town trying to find me something I claimed I wanted to eat only to be told it "tasted uggie" when he got back. The Hub held my limp body up in the tiny oncology floor shower at St. Luke's and carefully washed me clean when I felt "covered in hospital". The Hub carried me to the bathroom when I was too weak to walk the 10 steps. The Hub slept without covers in a freezing cold room when I was experiencing hot flashes from my chemo-induced menopause. The Hub drove me to appointments and meetings and business engagements because I wanted to keep working but was too tired to drive the car. The Hub moved the bed around 4 times just so it wouldn't feel like I was in the same room for months on end. The Hub took notes, made dinners, answered questions, shaved his head, wore a livestrong bracelet, remembered my hats, listened to my bitching and put up with my shattered confidence. He did all of those things. He did more. And he did it all while having to deal with his own fear, longing, worry, confusion, frustration and exhaustion. And he did it brilliantly. Without complaint. Without pause. And I find it ironic – so ironic that people would forget all about him when asking how I was doing. Because I can say with all my heart – it wasn't chemo that saved me … it was Steve. So I don't know how you are going to "not forget the support person" – maybe you'll send them an email. Maybe you'll shoot them a card in the mail. Maybe you'll take them out for lunch or maybe you'll just look them in the eyes and say "how are YOU?" I don't know. But do it. please. Just do it.
12) If all else fails (and even if it doesn't) just be honest
"I don't know what to say" goes a long way. "I don't know what to do for you." is even better. "I'm scared" may unlock something in the patient they need to express or it may give them a chance to help you. If you don't know, ask. "What's the prognosis?" is just fine to ask. Don't understand treatment? Ask the patient to explain it. Sense that explaining it is upsetting them? Ask if it is. Be gentle but be honest. Please don't tell a patient they look good if they don't. Please don't ask them to see the bright side. Please don't tell them how they should or shouldn't feel. Please don't compare one person's cancer or treatment to another. I'm getting off topic. The bottom line – be honest. I'll never forget the moment my friend and client-partner George looked me in my sunken eyes and said, "Oh Jenne, you look so weary." It was like cool rain or better, a warm blanket fresh from the drier. It was all I needed in that moment and it striped me bare of all the other bullshit I was dealing with. It was honest and genuine and gave me just an ounce of strength – and at the time, an ounce was a lot.
13) Ask some other patient – I think I've forgotten
To close this post, I decided to look back as some entries I made during those months. It turns out, I already answered this "what can I do" question a while ago … two treatments in as a matter of fact. I answered it in a post called Frequently Asked Questions of Cancer Girl.
Q: Is there anything I can do for you?
A: Yes. You can check you lymph nodes often. You can tell your spouse you love him or her. You can be grateful for the little things. You can make a donation to your charity of choice. You can smile at the bald woman at the mall. . You can count your blessings. You can stop taking everything personally. You can stop worrying about if you have the right dress or the right shoes or the right car. You can listen to someone when they are talking – really listen. You can tell your child it is okay to ask questions to the lady that looks different. You can give someone a second, third or 70th chance. You can hug your kid when she spills chocolate milk on her t-shirt. You can tell your dad thanks …for everything. You can send someone a card the next time they are going through something and just say "I don't know what to say but saying nothing isn't an option." You can tell your mom you are proud of her. You can open the door for someone else. You can remember that we are all connected. You can ask for what you want instead of complaining or pouting. You can stop trying to be who you aren't. You can say thank you to the waitress, the doorman, the person who holds the elevator. You can give someone else a break. You can worry a little less and start living a little more.
You can do all these things for me. And I'm going to try to do them for myself.
So there's that.