10 Things Not To Say To Someone With Cancer

Nobody really teaches you what to say to someone when they have been diagnosed with cancer, or any other disease for that matter.  Most of us know a simple “I’m so sorry to hear that” is an appropriate response.  However, sometimes we feel the need to say more.  This is when people have some major issues expressing themselves.

You probably haven’t been told that what you just said was stupid, offensive, painful, awkward, etc.  People won’t tell you because they realize you’re coming from a good place so they graciously accept your words and move on.  So I’m here to let you know that some of the things you may have said, you shouldn’t say anymore.  I know because I’m pretty sure I’m guilty of saying some of these myself.

Typically top 10 lists start with the smallest and work their way up to the biggest in order to build interest or excitement.  I’m starting with the #1 worst thing to say, just in case people start to read and don’t make it all the way to the end.

#1 -  Nothing

What it sounds like to the recipient:  I don't care and will only be there for you when times are good.

Though this list may seem to say the opposite, saying something stupid is better than saying nothing at all.  A lot of people feel uncomfortable because they don't know what to say, so they choose to say nothing at all.  But it gives the impression that you're just a fair-weather friend.  Going through a life changing diagnosis is hard enough without feeling like some people you thought were friends, were never actually your friends.

Try instead: Anything listed in the "try instead" sections below, except #6 because you'll just sound drunk.

#2 – Remember, God/life doesn’t give you anything you can’t handle!

What it sounds like to the recipient: Oh, no biggie - if you couldn't handle this you wouldn't have it.  So just be strong, you've clearly got it in there somewhere or you wouldn't have cancer.  Rub some dirt on it or something.

Cancer sucks.  Cancer is awful.  Cancer is not something you handle.  It just isn't.  Essentially, you're lying to someone when you tell them this.  Especially if you start it with "God" as it says nothing about this in the bible - it says we won't be tempted beyond our abilities.  Nobody is being tempted by cancer.  

Try instead:  "If there is anything I can do to help you with this, please let me know.  Remember, I love cooking/cleaning bathrooms/walking dogs/gardening, so don't hesitate to ask if I can do that for you."

#3 - Everything happens for a reason.

What it sounds like to the recipient: You either did something to deserve this, or, you're about to become an unwilling martyr so that someone else can benefit from your suffering.  Buck up, little camper - this is just how it was meant to be.  QUE SERA, SERA, WHATEVER WILL BEEEE, WILL BEEEE, LA LA LA LA LA, LA LA...

I don't even know how to tackle this one.  I can't even believe people think this is encouraging at all.  Why fight for my life if it's just meant to be?  This is essentially telling someone they should be happy for getting cancer because it's either penance or they get to become somebody great because of it.  Yes, this did happen for a reason - because sometimes life really sucks.

Try instead: "Dammit, life is so unfair.  I'm so sorry you're having to go through this."

   #4 - What are your odds?

What it sounds like to the recipient:  So...when are you going to die?

An individual is not a statistic, they are an individual.  Nobody has odds on an individual's chances - there are too many factors.  Plus, you don't need to remind the individual that they have a potentially terminal illness.  They've struggled with the "odds" mentally so much, probably are happy just when they aren't thinking about dying and you go and remind them.  Why?  Just because you're curious.

Try instead:  "Remember that when you do research, you're not a statistic; you're an individual. Don't pay those numbers any attention."

#5 - Here's my theory on what's happening.

What it sounds like to the recipient:  M-O-O-N, that spells cancer!

You would not believe the stupid theories I've heard during my battle with brain cancer.  "Maybe you shoved a q-tip too far in your ear."  "It was probably from your cell phone."  Nobody needs your theories.  The doctors have this under control.  If they don't, then you sure as hell aren't going to.  Plus, this puts the recipient of your words in a tough position - do they take the time to explain why you're stupid or do they just say "maybe" and walk away, potentially having to deal with your idiotic follow-ups?

Try instead: Talk to a close family member or friend about your theories, preferably one that doesn't know the person diagnosed with cancer.

#6 - Who? What? When? Where? Why? How?

What it sounds like to the recipient:  I know you've had to re-live all of this to every person you run into, could we spend this hour re-living it all again?  

Just like with the theories, you would not believe the stupid questions I've been asked.   "Do they just drill a small hole in your head and suck out your tumor with a tiny vacuum?"  "When you're awake during the surgery, will you be able to feel everything?  What happens if you move, will it make you brain dead?"  We've been through a lot.  If we leave out certain aspects, it's for a reason.  We don't want to explain scary surgeries we haven't had yet.  We aren't cancer experts and probably don't know answers to a lot of your questions.  And we certainly don't need to be reminded that we really haven't been able to process what is happening.

Try instead: www.google.com

 #7 - Once I almost got in a car accident and I thought I would die, so I know what it feels like to have to deal with your own mortality.

What it sounds like to the recipient:  I have no grasp of the real world and am stuck inside my grandiose delusions that I am wise and understand this world and this life.

Shut up.  No, you don't know what I'm going through.  You don't know what I'm feeling.  Your surgery to remove your ingrown toenail is nothing like my craniotomy.  Oh, you were awake for that ingrown toenail too?  Fantastic - that's exactly like me talking to my surgeons while they were cutting into my brain.  Totally.  Don't ever say the words "I know how you feel" unless you've gone through it yourself.  This is pretty much good advice for any situation, not just cancer or other illnesses.  "Oh, you just got a divorce?  I know how you feel - my dog passed away two years ago and my bed still feels empty."

Try instead:  "I was scared to death having to ______ once, I can't even imagine how you're feeling."

 #8 - I just got in a fight with my girlfriend and I...oh, I'm sorry.  I shouldn't be complaining to you.

What it sounds like to the recipient:  You're no longer my friend; you're just some sad sap with cancer.  All that stuff you used to do and be good at?  Sorry, you're just Sad Cancer Barbie now.

We're still the friend, co-worker, parent, cousin, brother, girlfriend that we were before.  Yes, we're going through a hard time and will be leaning on you more often.  But did you vent to us before?  Then please keep venting to us.  Did you joke with us before?  Then please keep joking with us.  Cancer is not our new identity - we are not superheroes and need you to pretend like you don't know our alter-egos anymore.  Cancer is just a new, unfortunate accessory in our lives.  Would you stop venting to me if I got a new tattoo?  "I just got in a fight with my parents and I...oh, I'm sorry.  I forgot you have that new tattoo to stare at, you clearly don't need me distracting you from looking at it."

Try instead:  "Do you have a minute?  I really need to vent."

  

#9 -  Wow, you look great!

What it sounds like to the recipient:  If I didn't know better, I'd have no idea that you're knocking on Death's door.

I know this one probably sounds ridiculous.  Part of the problem with saying this is that I know how I look, I see all the changes cancer has taken in my appearance.  I know I don't look great, so when people say this to me, I know it isn't "You look great in comparison to how you've always looked" it's "You look great in comparison to how I expected you to look".  Which is, I'm sure, partially to blame on Hollywood for their portrayals of people with cancer.  We're all totally bald and have purple rings under our eyes and dried, cracked, pale lips.  When you feel insecure about how you look, the last thing you want is someone drawing attention to it - positive or negative.

Try instead:  "I'm so glad to see you, I've missed that smile/laugh/sense of humor/etc."

#10 - At least you get to leave work early.

What it sounds like to the recipient:  You're so lucky you have cancer and all the amazing perks that come with it.

I feel like this one really should have to go without saying, but this has happened multiple times to me.  Never tell someone you think they have some sort of life perk because of cancer.  To us, they aren't perks.  I'd gladly trade you cancer for a normal work schedule again.  I'd gladly trade you cancer so that you can work from home one week a month, all alone, never leaving your apartment, feeling isolated and sick to your stomach as you type away and just wish you could sleep the week away. These aren't perks, they're added weights to carry and they suck.

Try instead:  Emailing, calling or texting someone when they're off work or can't make it out to a social event.  Let them know you're thinking about them and give them some desperately needed social interaction.

****

This is, in a way, my response to a list I saw about "things not to say to people with a chronic illness" online.  That list is pretty superficial and  99% of it is common sense, things I've never once heard from people during my fight.  Some of the highlights of this list are:  You just want attention, It's all in your head, Just pray harder, Stop being lazy and get a job.

Clearly this was not written by someone that has had a chronic illness.  This seems like it was written by some high school girl who wanted to make a difference and be a hero for a cause.  Because anyone going through an illness who hears anything like those examples will have one response - f*** you.

I know I get in situations where I don't know what to say and always wished someone made a life handbook.  So, it seemed only right that I share my experience on the receiving end of well intended thoughts and sayings.  Hopefully this helps someone feel more comfortable in knowing what to say.  Even better would be if this helps keep someone with cancer from hearing more of these comments above. 

They Never Warn You About the Hardest Part

Getting diagnosed with cancer is hard.  Going through treatment is hard.  Having your everyday life turned upside down is hard.  Facing the possibility of an early death is hard.  Watching your loved ones hurt for you is hard.  The doctors, the websites, the books, they all warn you about these things you're going to be facing.

But they never warn you about the hardest part.

Cancer forces you to face your shortcomings and flaws, head on and lightning fast.  Not only have things outside of your control changed, but now you have to change yourself.  It will be different for every person, but it's going to have to happen.  And it isn't easy.

I've always been a pretty independent person and that independence has only grown as I've gotten older.  I live by myself.  I pay all my own bills.  I take care of my dog.  I work a full-time job.  I'm single.  Though I adore my loved ones, I tend to only rely on them for emotional support.  Everything else, I can do for myself - I can open that pickle jar, I can kill that spider, I can give someone a tongue lashing if they're disrespecting me.  Then in strolls cancer and I can't be that independent anymore.

My mom and best friend took turns babysitting me 24 hours a day for my first week of recovering from surgery.  I couldn't drive myself around for the first month.  I couldn't lift anything heavier than a milk jug.  I couldn't walk my dog.  I couldn't go to work.  Disability was paying my bills, not me.  I hardly had enough energy to wipe my own ass, let alone open a pickle jar. I had to force myself to ask for help.  I had to change my independence.  I had to let go and let others help me so that I could heal.

I've always been a fighter.  Put an obstacle in front of me and I'll do my best to smash it to rubble.  The radiation and chemo kept me in good spirits because I was fighting, I was doing something.  Then the daily treatment stopped and I didn't know what to do with myself.  I didn't know how to just sit around and wait for 8 weeks to see if anything worked.

My optimism and strength vanished. I struggled, I broke down constantly.  There was nothing for me to do. I had to change my fight into patience.  Patience has never been a virtue for me.  With nothing to do, I got trapped in my own head often.  I had to re-train myself, teach myself to be alone and find peace.  Teach myself to quiet my mind and focus on other things.  Teach myself to stop over-thinking like I have my entire life and just accept that I've done all I can do for now.  The rest is in the hands of Science for now.

I could go on for about twenty more paragraphs about the things I've had to change, tweak or squash about myself.  But this post isn't so much about the details of my struggle as it is a hope that it can be an insight to people about some of the deeper, unseen struggles of cancer, so that when you tell someone going through cancer "you're so strong" maybe you'll have a better understanding of the strength it takes.  Anyone can take medicine, lay on a table as they shoot lasers at them or sit in a chair for hours with an IV.  But the hardest parts of cancer, most people don't have a clue about; nobody speaks about it, nobody warns you about it.

Simple Introduction

There's been a lot leading up to me starting a blog about my fight with cancer. A lot of it is boring, a lot isn't. But I feel like I should give a brief update as to how I got to where I am today.

It started by me waking up in the middle of the night in a state of sheer terror. No other thoughts, no idea why I was scared, just pure terror. Thought they were night terrors, then maybe nocturnal panic attacks.

Turns out, they were seizures. Went on anti-seizure meds that started out at 500 mg and went up to 3ooo mg. Seizures kept happening. They were the worst things I ever had felt in my life. Medicine didn't seem to be helping and I was worried I'd have to live with these the rest of my life. I was not okay with that.

Finally, I pushed my doctor enough to get him to order an MRI. Results came back abnormal; I had a brain tumor. Operation was a must as the tumor had grown to the size of a "small tomato".

Surgery happened on Friday the 13th of January. Unfortunately, I had to be awake for the entire surgery. But that may be another post for another time. The surgeon was able to remove far more of the tumor than he expected, but there was still 15% of it left in my brain.

Pathology came back that my tumor was malignant. I have brain cancer. Went through 6 weeks of radiation and chemotherapy (more chemo to come over the next 4 months). The doctors were amazed at my energy levels and how good my blood work looked every week.

Which brings us to today - about 2 weeks after my radiation has ended. I'm back to work part-time, about a week away from my next round of chemo and in a mental place I've never been before. Hence the blog. Writing has always helped me process, so I decided to process in a public place. Maybe it will help someone else going through cancer, or help a cancer patient's family or friends have a better understanding of what could be going on mentally with them.

I'm going to attempt to be as honest and raw and real as possible. The language may offend, but this is all about not censoring my feelings. This isn't meant for a "hoo-rah, you can beat cancer, life is just peachy" perspective. There may be days of that, but there may be days of "why even bother?"

Feel free to observe, comment, pass on, ask questions, ignore - whatever.