Wednesday, February 19, 2014

Get Ready To Take Some Notes...

Where to begin. It has been weeks since I have had it in me to write. The state of my affairs is messy and to be quite honest I avoid thinking about my life as much as possible. It is as though thinking about the tumor that forever sits in my abdomen, feeding off of my blood vessel, will actually exist if I so much as think of the word 'cancer'. Sitting here writing about it is not easy, but in doing so I think it is a step towards healing.

I will warn you, however, that this blog is not intended to spark some intrinsic motivation within you nor is it intended to be inspiring. Instead, I would like to provide those who read this with a guide of how to talk to someone with cancer without coming off as a total asshole. Now this blog may piss a few of you off as you read the words and think, "hey! I do that!" If that is the case...too fucking bad for you. Hopefully you will take note and better yourself. I have withheld for nearly two years from saying what I really feel on this topic and to be honest I just don't give a fuck anymore :) so without further adieu, here are my tips for what to do/what not to do when chatting with a cancer warrior.

Number One: This is by far the most important rule. If you should choose to read this and remember nothing else or think that I am a lunatic and you are in fact an expert on the whole cancer situation, please remember this one thing. STOP. FUCKING. ASKING. US. HOW. WE. FEEL. I'm not sure exactly why this is people's favorite god damn sentence on the planet, but on behalf of cancer patients everywhere, STAHP. I have never in my life approached somebody and said, "Hey! Long time no see! How are the kids? Also, how are you feeling?" You know why? Because it is awkward as fuck. Imagine for a second saying it to someone without cancer. No, seriously imagine it. Role play that shit out. See how ridiculous you sound?

Also, the truth is, when you ask me this you are either going to get an, "oh I'm fine" which is a lie, or you're going to get the truth. The truth, ladies and gents, is never what you really want to hear. Because when I tell you the truth you have no idea how to respond. Asking me this question is annoying because you turn me into either a liar by making me fake how amazing I am, or into a whiner which is not who I want to be. Just assume that I am feeling fine unless I tell you otherwise. Because really, I'm not feeling amazing. But I'm also not in agony. I lie somewhere in between and every time you ask me how I'm feeling I am forced to remember that things could, in fact, be better in my cancery Universe.

On top of it being extremely awkward, it is also extremely rude. When you send me these text messages or Facebook messages or when you see me in person and ask me this, do you ever for one second stop to think that maybe I am not somewhere I feel like discussing it? That this is not what I want to think about when I'm at practicum or when I am enjoying time with my family or friends? It demonstrates that you have no consideration for what I could possibly be doing and the fact that maybe I don't have time to be sad at that particular moment. Just because you want to discuss it, doesn't mean I am somewhere that I can. If you really care about me than all I ask is that you treat me normally. Speak to me as you would anyone else. If I feel like chatting about my cancer, I will. If I don't, I won't. And guess what? It's my fucking story so I will share it, or not share it when I feel like it! Treating me normally allows me the choice and the dignity of saving face about my cancer and is much more effective in preventing you from looking like a dickhead in my eyes.

A quick summary: "Hey Kayla! How are you feeling?" will result in a loud groan and possibly a swift kick in the shins. This is UNACCEPTABLE.

"Hey Kayla! How's life? Heard you were dating Ryan Gosling? That's awesome! How's your practicum??" is PERFECT. This results in you being a normal person and likely someone I will actually want to talk to. High five!

Number Two: Stop complimenting our toques, hats, headscarves, etc. You sound like a jackass. I am aware I have no hair. Unless I am wearing something really unique on my head (like a mini tiger or something you'd see on an episode of Sex And The City) you do not need to overcompensate and make conversation this way. Complimenting our bald look will go a lot further if you're trying to flatter us. However, DO NOT compliment our baldness unless you are genuine. Because trust me, we can tell when you're full of shit. It's okay to think I look like garbage without hair! Hell, maybe you thought I looked like garbage WITH hair! There is no need for any talk on this subject. All it does it shows me how uncomfortable I make you feel and automatically puts up an emotional brigade between us. I never usually walk up to someone and tell them how amazing they look in a typical conversation unless they are dressed up or something. So why do you feel the need to compliment me now when chances are you never did so in the past when I had hair? I'm bald. I get it. Now let's move on.

Number Three: I cannot stress this enough. Cancer patients are not 'heroes'. We are just normal people who happened to get hit with a little bit of bad luck. Sure some handle their cancer in ways that are maybe more 'inspiring' to you people. Some people put on their adult ginchies and go through cancer with a big smile on their face, plastering your newsfeed with motivational quotes and cancer ribbons. Others endure their journey by lying around pissed off and feeling like the world has dealt them a shitty deck of cards, barely lifting themselves off their beds to take a shower. Well I have some news for all of you. No matter how anyone chooses to go through their personal cancer journey, they are doing it just fine. If they want to be sad they have every fucking right to be sad. Because guess what? They have cancer. And cancer fucking sucks. You have no right to judge them for being down or negative. As for those who go through it with a smile and a positive outlook? They are not heroes. They are people who were forced to handle having cancer and were given no choice. They had no choice in undergoing treatment. They had no choice having their bodies pumped full of poison. They had no choice in any of it. They are not the super human you build them up to be. I am no more inspiring than you would be if you were dealt the unfortunate news of having cancer. You too would be left with no choices, forced to either comply with what the doctors say or die. When those are your only two options, it is fairly simple to become one of these 'heroes' you all speak of.

I must also ask what happens to those who go through cancer without this motivational attitude you all love so much? Are they not heroes? And what happens to the fighters who lose their battle? Does that make them any less of a hero than those who fought and won? Beating cancer isn't about your attitude or how inspiring you are throughout your journey. It's about your body and how it responds to treatment. Simple as that. Some people are able to beat it and some are not. It has nothing to do with attitude as much as you like to think and hope and pray that it does. It is my opinion that people like to believe beating a killer disease like cancer happens with a positive attitude because it scares the shit out of them to think of the alternative. It's fucking scary to think that even with a positive attitude and all the right motivation you may still end up six feet under from this disease. Trust me, that scared me too at first. But as my journey with cancer continues I have learned that despite a positive attitude, my cancer continues to thrive. Don't get me wrong, the positivity thing helps me cope a lot better sure. But it's not a cure and anyone who believes that your mind can beat cancer is seriously doing an injustice to all of us who are already dealing with so much. To place the blame of cancer upon the patient is not only cruel, it's ignorant. It is sad when you build us up as heroes. Putting us on a pedestal that can in the end leave us feeling disappointed in ourselves and to blame for something we have no control over.

While we appreciate the sentiment that we are inspiring to you, on behalf of cancer fighters everywhere I can assure you that we all politely say thank you, and then discreetly roll our eyes and later on journal about how ridiculous we feel when we are called that. Telling us we are resilient or badass goes a lot further than calling us heroes ever would.

Number Four - The FINAL Point: Please, for the love of all things cheesy and bad for me, stop telling me how to cure myself, how to eat, and what to do with my life. While I understand that all of these remedies come from a place of genuine caring, there is a reason they are not used to cure cancer. If drinking ten cups of puréed broccoli cured cancer, people would do it. Most of these remedies that you all see on Facebook and then randomly send to me are not actually cures. You never actually take the time to research them. You just see "HERB/TEA/ROTTEN BANANA KILLS 98% OF CANCER!!!!!" and suddenly my wall, inbox and phone are blown up with links (because trust me, you're not the only one who sent it. Chances are I already saw it weeks ago from someone else). Trust me, I believe in alternative medicine. It helps with a lot of symptoms and can also improve quality of life. But they do not cure cancer as much as you and I would like them to. Not to mention, do you honestly think I haven't looked into cures? Do you think I am so unaware of my health that I can't do my own research? It is almost insulting having you send me all of these tips and so called cures like you're some kind of god who is going to cure me.

Which brings me to my next point. What is even more insulting is when you message me randomly after not seeing me for years and say things like "stay positive!" or "doctors will help!" I've been dealing with this for almost two years. You've known for 30 seconds. I was staying positive before this chat. Now the only thing I'm positive about is that I want to punch you in the throat. Unless you have physically had cancer yourself or been in a caregiving situation with someone who has, it is very unlikely I wish to hear your opinions on it. Saying things to me like, "you should go out and socialize more, it's good for your healing to be out" will not only guarantee that I do not attend your event, but also that I will likely not want to speak with you again. As well, and this is common with all of my cancer warrior friends, STOP ASKING US OUT FOR COFFEE. Did we ever go for coffee before? No? Well, then why start now? This whole coffee gesture is one of two things. It is either a way to help you relieve your guilt at not being closer with me before, or is a way to get information so you can gossip about it to people we both know. If we were not friends before there is no need to start now. I still go for coffee with the people I always have, but I feel no need to suddenly go for coffee twenty times a week with the people who are not talking to me with genuine intentions. I became the most popular person ever once diagnosed with cancer. People who never spoke a word to you suddenly want to take you out. Co workers who hated you are suddenly phoning. Yet somehow you become the asshole when you decline their offers to go for coffee because they do not realize that you have twenty other messages in your inbox asking you the same question. Remember this please the next time you speak to your acquaintance/friend/co worker/lover with cancer. If they were an acquaintance before, it is perfectly acceptable that they remain one now. If they were less than that, than leaving them there is great too. Offering your condolences or best wishes is kind, but leave it at that. They do not need anymore tips on juicing or invites for coffee. Sometimes the best thing you can do is simply respect their space.

In the end I could have written about ten more points on this subject. To be honest I am fully aware of how hard it is speaking to someone with an illness, never mind a terminal one. Prior to my diagnosis I was not nearly as informed as I am now. Granted I had already had traumatic experiences with cancer and was more informed than some. I empathize with those who have been blessed and have not had such experiences and are subsequently left blissfully ignorant of what I face daily in my cancery world. They are lucky and I hope they never have to learn these things the way I have. But if this post can help save even a few relationships from an awkward moment than my job is complete. What it comes down to when speaking to anyone with cancer is pretty simple; Let us live as normal of a life as possible. Treat us as you would anyone else. If we choose to open up to you or ask for something than you can go from there. But remembering our dignity and our personal privacy is so important. Our lives have been taken from us and often many of us feel like we have no control over anything. Respecting us enough to remember that we have control over how or when we choose to speak about our cancer is so important.

Thank you all for taking the time to read this long winded post! I hope I still have a few friends left after, and truthfully, hope that some of the phonies will bugger off. Please know that I do genuinely appreciate all the kindness so many of you send my way. I promise to keep the next one shorter and less intense :)

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  1. Hey powerful message..I truly enjoy and respect your Blog. To me you are just what you were when I met you.....your own person.

  2. #5 Don't tell me about your mom, dad, bff, brother, sister, cat or whomever that died of cancer... Just don't.
    Anyway Kayla, wish I had your guts (not literally tho).