CN: In depth discussion of the experience of cancer and cancer treatments, chronic illness, sexuality, mention of cannabis use.
Those of us who have dealt with a chronic illness understand the value of using humor to face the difficulty and often indignity involved in our daily life. We also use humor to connect with others, particularly those who have gone through the same trials that we have. Liz Winship’s thoughts in today’s guest post are specific to cancer, but her advice rings true for anyone with a chronic illness or invisible disability and will definitely bring a smile to your face.
If you’re reading this, you or someone you care about has probably been diagnosed with some kind of cancer. Or maybe you’re just a really smart cookie who reads this blog a lot. Or maybe the edibles kicked in an hour ago while you were looking for something to read and you have no idea how you got here. That’s cool too!
So let’s get to it. I’m a cancer “survivor” myself (although I admit I feel a little weird using that term when I spent so much of my treatment period getting high and playing Stardew Valley). Specifically, I had Hodgkins Lymphoma AND thyroid cancer as a bonus. That means I’ve done chemo and surgery, AND radiation. I’m a triple threat =D
When you have cancer, many of the people in your life won’t really know what to say. They also might act weird around you. And I guess that’s understandable. I mean, most topics that come up in everyday socializing and conversation just don’t quite compare to, “ I have clusters of rapidly dividing cells that are slowly killing me so I have to eat poison that will kill them but also risks killing me too.” Things can get awkward.
Talking to medical professionals is a little less awkward, but because they haven’t necessarily experienced cancer themselves, there can still be a disconnect.
To help with feelings of isolation that these circumstances can create, I have compiled a list of things I wish that I had known when the process started. I hope it is helpful.
1. Everyone will ask you if you need anything. It is probably a bad idea to punch them or cry.
Seriously, don’t do it. I know you want to.
Cancer is a part of your life now, and you’ve had some time to come to peace with it. But whoever you just told is new to the whole thing, and they may or may not have any practical experience in dealing with stuff like this.
Some people will be super chill and understanding. Some people will act like you just told them their house is on fire. And unfortunately, it can be hard to predict who will do what.
A LOT of people will ask you if there’s anything they can do. It can be hard to know what to say, but I found a solution: simply ask them to explain your situation to specified parties so that you can spend less time having the same difficult conversation over and over again and more time napping.
2. Jolly Ranchers are everything.
No, seriously, let me explain!
Yes, I mean those cheap little candies that taste like a wizard took the scented markers you played with in elementary school and made them edible.
I’m not a big hard candy person myself, but when I was in chemo I went through quite a few of those little suckers. You see, a lot of people will be sticking needles into you that are full of substances so strong that you can actually taste the contents of the syringe. And they don’t exactly taste like homemade cookies. The actual flavors may vary, depending on your cocktail and depending on how your taste buds are doing (they may or may not work normally during the treatment) but during most my treatments my mouth tasted like an unholy combination of gratuitous menthol and rust.
This is not to frighten you- You may not experience this rust/menthol mouth funk at all. But I recommend you have some Jolly Ranchers (or any other hard candy you don’t find too disgusting) on hand when you go into infusion. It can make a huge difference.
3. Now that you have first-hand experience with cancer, pretty much every mediocre TV drama will be ruined for you.
“I’m afraid you have plot cancer Mrs. Suburbia. It is either easily treatable or 100% terminal, depending on whether or not this show is getting a second season.”
No, you’re not imagining things- most film and TV writers have no idea what cancer actually is. Laugh at them. You’ll feel better.
4. There is actually no law against having sex while you are being treated for cancer.
I know, right??!!
(To my lovely asexuals, you might find this one boring and may want to skip it).
Between the many inaccurate narratives about cancer (see tip 3) and the all-too-pervasive myth that only young, wealthy, skinny, gleaming white people ever engage in fulfilling sexual activity, it can be easy for the cancer patient to feel undesirable. Additionally, any close physical contact with anyone right after a blast of radiation or a shot of chemo is probably not a good idea because of residue, as your doctor will probably tell you (if you’re not sure, ask).
However, that will probably still leave many windows of time where you CAN safely touch and be touched, and if you have a partner (or partners) that you trust, go for it! Your stamina might not be what it usually is (and be careful of any ports or PICC lines) and depending on the nature of your cancer, your usual positions might need an adjustment. But intimacy in such a weird and stressful time can be very helpful, and you should absolutely give it a shot it if appeals to you.
5. Wearing face masks in public is a really good way to get people to leave you alone.
No more waiting for that cluster of people to clear out of the candy aisle so you can get more Jolly Ranchers- they’ll just clear out by themselves!
If you’re undergoing chemo, then chances are your immune system will take a hit. That means that if you go out into public, a mask is probably a good idea. But a mask has another purpose- it signals that something is wrong without you having to say anything.
This is especially helpful for those who are dealing with cancer at a young age. I was 26 when I was diagnosed and did not look particularly sick. The mask not only gave me some protection, it also functioned as a marker of my sickness. No, I’m not taking the one chair in this grocery store to be a young punk and steal it from the elderly, I am actually full of tumors and can’t stand for very long without great pain.
That young people who “don’t look sick” must resort to such things is an injustice, but if you lack the energy to cope with people giving you dirty looks, the mask is an excellent solution.
6. No matter how much of a bookworm you are, trying to read right after chemo will pretty much always be a bad idea.
Seriously, put the Jane Austen down. You’re only going to make yourself sad.
If you’re like me, you have several stacks of books around- books that you are about to read, are currently reading, re-reading, re-reading after not quite finishing the first time, ect. And you might be thinking that you’re finally going to finish them all. I’m here to tell you that you almost certainly won’t.
That doesn’t mean you shouldn’t try at least once (maybe you’ll luckier than me!) but one common side effect of chemo is a lack of focus. Reading about this fatigue and experiencing it are two very different things because the lack of focus is not always accompanied by physical exhaustion. In other words, your body might feel ready for just about anything, but your mind will feel like you just spent 48 hours cramming for a calculus final while doing tequila shots at the same time. It’s a disorienting sensation, especially if you’re not used to it.
Fortunately, treatments are usually spaced such that the body has at least a week or two to recover. You’ll start to get a sense of which days are safe for more complex reading and which days are better for naps. If you really want to snuggle up with a book on one of the “bad days,” you might try large print books, prose, or comic books. Just be kind to yourself. And if you need some kind of stimulation but can’t seem to tolerate words or images, give music a try.
7. It’s OK to want to be alone sometimes.
You are not a source of inspiration for others to consume- you are a fucking human being.
In spite of the crappiness that is cancer, my treatment period did involve some good times with friends and family. These moments can make the pain easier, but they can also make you feel guilty when you want to be alone.
Cancer is something that most people have been touched by in some way, but it’s also something that not everyone has personally experienced. However much someone loves you and however patient they are, some aspects of your life will be difficult for them to comprehend if they don’t have that first hand knowledge. Their ideas and assumptions about your life as a cancer patient will not always match the reality that you live everyday, and sometimes that dissonance will be uncomfortable.
Give yourself permission to chill by yourself, if you need to. Doctors, friends and family can offer support in saving your life, but you’re the one who has to live it. Do so as you please.
About the guest blogger: Liz Winship is a Mezzo-Soprano/Writer/Chocolate enthusiast who is currently working on her Masters in vocal performance. She enjoys music, reading, videogames, cooking, and giggling at silly memes (especially when they involve cats). She lives primarily on the west coast, but currently dwells in the South for schooling purposes.