So you’ve just been diagnosed with cancer: 10 things for your consideration
This piece was originally written in February of 2017 as I was finishing up my first year of treatment.
A cancer diagnosis is almost always scary, and it can also be confusing, frustrating, lonely, and overwhelming. People ranging from your spouse to your doctor will have lots of thoughts and opinions, and it’s not hard to get lost in the whirlwind of scheduling appointments, responding to offers of assistance, and your own emotions. It can be exhausting and aggravating.
When I was diagnosed with cancer, I was surprised by the lack of practical support and guidance available. It was especially alienating as a young queer woman of color with breast cancer. Everyone — even doctors — made a lot of assumptions about my values and my needs and I had to advocate for myself every step of the way. I could not find other cancer narratives about patients I could relate to and identify with.
I decided early on in my journey of illness that my biggest “Fuck you” to cancer would be using my experience to help others feel empowered and less alone and to be as real and honest as possible about it.
So if you’ve just received a cancer diagnosis, I hope you find the following helpful. I wish someone had told me some of this stuff when I got sick. Fortunately, however, I’m still alive and kicking and hopefully sharing this can make your cancer diagnosis just a little easier to bear.
1. From one cancer patient to another
I celebrated the one-year anniversary of my cancer diagnosis with a trip to Disneyland. Complicated feelings about my complicity in blatant consumerist activities aside, it was a perfect adventure. I grew up in Southern California, so Disneyland was a regular ritual, but I hadn’t visited the park in over a decade.
I kinda felt like, “Hey Liz, you just survived a year of cancer, what are you going to do next?” “I’m going to Disneylanddd!”
I feel like a veteran cancer patient, chemo-hardened and nearly on the other side of my treatment, with miles and miles and miles of perspective from where I stand. I didn’t know that this comes with some time-honored traditions until friends started asking me to speak with their friends who have just received entry into the Cool Cancer Kids Club. Suddenly everyone’s efforts to put me in touch with their “cancer friends” when I was handed down my diagnosis makes a new kind of sense. Though I didn’t respond to the majority of those outreaches, I know the cancer patients who made the gesture understood I was simply too overwhelmed to write back because they also were once too overwhelmed.
And now you are probably overwhelmed, too.
So I decided to make this easy on me and on you. Here it is — a neat little article you can pass on to your friends and loved ones with cancer. If you are the recipient of this article, know that I get it. I’ve tried to make it easy for you to find some companionship and community in this without the guilt of feeling like you have to respond.
Take from here what makes sense to you and ignore the rest.
Anyway, here we go.
2. It’s okay to be emotional
Breathe. Scream. Cry. Throw your phone across the room. Go crazy. Yell at people. Go for a run. Do nothing. Eat. Spend money. Fluctuate between fear, courage, abject terror, and sheer absurdity without shame. Test the furthest limits of those who claim to love you. You really will find out who your family is, and you’ll be so fulfilled with that love you won’t give a shit about the rascals who inevitably disappeared on you. (And trust me, folks will bail. That’s their problem, not yours.)
3. You are not alone and you will still feel lonely
I’m sorry to welcome you to the cancer club, but hey, at least we have a club! No healthy people are allowed.
Everyone’s cancer is different, everyone’s experience of cancer is different, and everyone’s cancer treatment is different, but we’re also all humans facing potentially totally unfair death sentences, and none of the treatments are easy. When you’re staring your mortality in the eye, and your mortality winks at you, and you don’t know what the secret behind the gesture is, it tends to strip away all your egomaniacal bullshit and self-defense mechanisms. It makes you confront the true nature of your being. That is something most people don’t get the opportunity to wrestle with. It is profoundly life-altering, and now you and I can roll our eyes at the rest of the world when they fuss over petty things. We know the terrible secret.
No matter how you got here, you’re here, and we can all agree that fuck cancer. Welcome to the club. And seriously — fuck cancer.
4. Apply the ring theory
Read up on the “ring theory,” which is also known as the “concentric circles of care,” among other names. The gist of it is basically this: You are now the center of a bullseye. No one else is in the center but you. There are rings that surround the bullseye, and they get bigger and bigger and grow farther and farther away from the bullseye. Everyone who is taking care of you is in one of those circles, and the people closest to the bullseye (your parents, your lover, your friends, whoever), their only job is to give to you. Give you love, give you rides to the hospital, give you help keeping your house clean. No one in any of these circles is allowed to take from you — and they are especially not allowed to take any emotional labor from you. Yes, your caregivers will need help processing, but that’s not your job. They can take from the outer circles, but they can’t take from the inner circles.
You are allowed to kick people out of their circles. You are allowed boundaries and space. Anyone who tries to make you do something you don’t want to do (including your doctor) gets kicked out. Anyone who stresses you out, makes you feel bad, or lays their feelings out on you gets kicked the fuck out. They are not necessarily bad people, but they have to find their appropriate circle, and it may be the circle all the way on the edge. The folks in the closest circle, part of their job is to advocate for you, and to act as your first line of defense against people who might come snooping around for something to take from you. They are your buffer. That means that sometimes your friends can totally tell your parents to get the fuck out and leave you alone.
Hold people accountable, and if someone is misbehaving, hey, guess what? You’re the boss. Fire them or move them to a different department. Better yet, have someone in one of your closest circles deal with the problem person.
5. Cancer is a marathon, not a sprint
Cancer treatment is a marathon, not a sprint. At first, you will probably receive an outpouring of support, gifts, flowers, cards, and offers of help and care. You see, now that you’re sick, they are being forced to confront their mortality in your eyes and they don’t want to feel helpless. The initial support is frantic, almost desperate, and what they don’t realize is that you’re going to be in treatment for a long time. Your wisest friends will know this, but some of your other friends — as well-meaning as they are — won’t have the foresight to realize that what you really need is people to promise to show up when everyone else has left the party.
So when folks say, “What can I do?” remind them that the most meaningful thing they can do is not forget. And give you money.
6. We shouldn’t have to crowdfund our cancer treatments and yes, people should give you money
Because cancer is expensive. Thanks to my hard work, privilege, and luck, I’ve got pretty decent health insurance through my employer, but that only covers so much. My cold caps were out-of-pocket to the tune of about $600 a month for the six months of treatment that required them. And yup, we crowdfunded that.
(By the way, cold caps are one way you can save your hair through chemo. The whole thing is miserable and arduous and a goddamn pain in the ass, but totally worth it. Your mileage may vary, but it’s worth trying!)
In addition to medication and treatments, there are other costs: Transportation to appointments, missed work, organic vegetables, supplements, over-the-counter medications, ointments, tinctures, delivery meals because you’re too damn tired to cook, desperate shopping sprees, and medical marijuana.
So yes, let your friends set up that GoFundMe. Yes, it’s okay to ask for help. Nope, there is nothing wrong with asking for money, especially since we live in a capitalist society at the mercy of insurance and pharmaceutical companies that profit from our illnesses and employers who exploit our labor. Fuck cancer, and fuck those other guys too.
It is a radical act to ask for and accept help, it is a radical act to turn to community and camaraderie for support. Humans are clever but puny animals who only survived dark nights, famine, disease, and blood-thirsty jaguars with the help of others. We need each other to live and we especially need each other when we are sick.
Look — I make $100,000 a year as a software developer in San Francisco, and I still needed financial help to get through the most expensive parts of my treatment without derailing my future. No one should go into bankruptcy, put off paying loans, quit school, or defer the dream of buying a home, starting a family, or going on a nice vacation just because they get sick. That includes you, too.
Ask for the money. Take the money. Use the money. If that is the currency of wellness, so be it, and do not be ashamed to ask for it. Wellness is your right.
7. Fight with your doctors
Fight with your doctors. Yell at them. Tell them to fuck off. Question aspects of your treatment. Shop around. It’s going to feel like every decision is critical and urgent — and they certainly are — but the long-term side effects of undergoing a treatment or procedure that does not sit right with your gut at the recommendation of a doctor you don’t feel good about will haunt you.
You are already forced into compromises with this shit disease. There are so many sacrifices you are about to make. Hold onto the things you can control, like saying, “No.” “No” is totally an all-right thing to say.
Think of it this way: In addition to membership to this Totally Cool Club (just kidding — it’s awful), you’ve also inherited a team of medical professionals. Yes, doctors are supposed to work for the love of fixing broken humans, but it’s also their job, and you are the one hiring them. You’re the boss. You’re the coach of this team. You have every right to fire them, bench them, or send them off the field with a yellow card. You can trade team members, conduct interviews and never call them back, gather information from them, cancel your surgery last minute, ask a million questions, demand appointments, records, charts, and explanations, and assert your own personalized lifetime of knowledge about your body over theirs.
Doctors are humans — not gods — and they are not infallible. They come with the same biases you and I have, the same off days, and the same limits to their knowledge and experience. If a doctor doesn’t feel right, then forget about them. They are doctors you are ultimately going to trust with the most precious gift you can give — your life. If they can’t respect that, then they don’t deserve to treat you.
8. People are going to say really exasperating nonsense stuff to you
Whether or not you choose to disclose your illness to the world at large, when you do, people are going to say some fucking stupid shit to you in response. It’s totally not cool, but you can only educate people so much, and some days you’re just going to be too tired to educate people and anyway, they’re the ones with the privilege of health who ought to be educating themselves. But I digress …
You shouldn’t have to do this, but it’s pretty much unavoidable, so start cultivating a private tropical beach in your head you can retreat to in the backseat when the Lyft driver starts going on and on about some inane b.s. about how they know someone-who-knows-someone who drank lemon juice with a clove of garlic and their tumor magically shrank away —
Wait, did your personal waiter just deliver a margarita to your beach chair? Take a sip. Refreshing, isn’t it? I hear the water is warm, and if you look closely, there are dolphins somersaulting on the horizon. I love the sound of the waves, don’t you? So relaxing …
9. Your cancer is all yours
Whatever course of treatment you decide on is the right course of treatment for you. This is your decision and your decision alone. You may decide to refuse treatment altogether. You may decide to follow all your doctor’s orders. You may decide to start a drug and then stop it when the side effects become too much. You may decide you don’t want to do chemo because you don’t want to lose your hair. You may decide you don’t care about losing your hair, so let’s try every chemo ever made.
You might fight to live for yourself, for your children, for the book you want to finish writing. You might fight to live out of sheer spite because life has already thrown a bunch of unjust hardship at you, and even though you’re exhausted and beaten down, you ain’t gonna let those assholes see you fall. You might decide that your fight will be the one to the shadowlands to meet your maker if you believe in a maker at all. You don’t have to justify your reasons for your decisions to anyone. As I said, you are the boss. Whatever you say, goes.
10. There are no words that can comfort you
I wish I could tell you everything is going to be all right, but I don’t know that. It’s not what you want to hear right now anyway because it’s what everyone else is trying to tell you even though they don’t know either. You can’t blame them. They’re scared. And you’re even more scared.
I don’t know if things are going to be okay. I don’t know what treatment will be like for you. I don’t know what the best decisions to make are. I don’t know if surgery will cure you. I don’t know if you will die. I don’t know if you will live. I hate to give cancer credit, but one of its most important lessons has been that I don’t really know much of anything at all.
However, what I do know is that this is really unfair. What I do know is you are going to do the best you can and make the choices that are right for you. What I do know is I am truly, deeply, and helplessly sorry.
What I do know is you don’t deserve this, and whoever you are, I am hoping for the best for you.