Don’t Tell Me How to Feel

Would you tell someone that it’s great their son only lost his arm rather than die in a car accident?

Say “Oh my God! That is fucking fantastic that you just have epileptic seizures!  Better than brain damage or worse!”

No?  Then why tell me how to feel about my cancer and my life?

Why tell me that my breasts mean nothing?  Or say “C’mon.  You don’t really need your breasts anymore, do you?  It’s not like it’s your life …”

It’s only hair.

Stop complaining.

I’ve been told how to act, how to do cancer, how to survive, how to live my life, how to love and to hate.

Be strong.  Be brave.  Stay positive.  Be tough.  Fight hard.  Kick ass.  Be a warrior.  You’ve got this.  Why are you acting like a bitch?  What’s wrong with you?

It could be worse. Yes, it could … and I am the first to recognize this. But that doesn’t mean I can’t momentarily slip and acknowledge my life has taken a turn for the worst right now.

My personal favourite … “You are only given what you can handle.”  What I can handle? How about a LottoMax win, health, wealth and happiness for my son and a decent man?

I realize these comments are meant to be encouraging, but to deny my feelings is to invalidate them.

Invalidation is everywhere.  It’s so common now, it seems normal.  But is it healthy to deny someone their feelings?  Parent to child.  Partner to partner.  Friend to friend.  It makes you flinch and withdraw.  I’m emotionally raw and it’s all about me.  Your journey and mine don’t run in parallel.  Your lessons aren’t my lessons.

At best, the invalidation comes from a good place and is meant to be helpful (but misses the mark).

At worst, it is a classic tactic in abusive relationships, and I’ve been subjected to it before and it makes me twitch.

It’s nothing to get upset over.
Why are you acting this way?
Stop feeling sorry for yourself.
You just need to get past that.
It can’t be that bad.
It’s not worth getting upset over (but I am!!!)
Don’t be so dramatic!
Just stop thinking about it.
You’re not going to die.
You are making a huge deal out of nothing!!

Painful feelings that are denied and ignored will gain strength like a hurricane in the night.  Trauma is personal.  It doesn’t disappear if it is told to buck up and stop being so negative.  Further emotional inhibition leads to further emotional stress.  Each of us is allowed to fully feel our journey.  Our pain.  Our fears.  Our losses.  None of us think exactly alike so why try to force someone into your way of thinking? Especially when it isn’t about you?  Unsolicited advice usually suits the sender more than the receiver.

I just love to be told “You’ll be fine.  Stop worrying.”  Who are you?  God?  A psychic (I love the ones who have reached out to me!)  My Oncologist?  Even she, the Chief of Oncology and owning a provincial seat in systemic medicine doesn’t dare tell me “I will be fine.”  She knows the odds.  She is the one who lined them up for me.

No one is promised tomorrow.

Feelings of outright fear, complete denial, raging anger, doubtful uncertainty, intense guilt, debilitating stress, deep depression, ramped up anxiety, utter loneliness, intentional and unintentional isolation, profound sadness are all a perfectly normal part of the cancer experience.  Sweeping them under the carpet denies them the clean air and the sunshine they need to dissipate.

I have not allowed cancer to define who I am, but it has forced itself into my life like a violent home invader.  I have no choice but to acknowledge it and carry it on my back (or front as in my case).  Sometimes I am strong.  Sometimes I am weak.  Sometimes I want to fling it at the wall and beat the living shit out of it.  If I was terminal, I’d kill it.  Sometimes it overpowers me and forces me into submission to show me who is the boss.  Sometimes I rage back and wrestle control from its deathly fingers.  It flips me off and I flip my finger back at it, tongue stuck out (3-year-old Lisa again). Sometimes I ignore it.  Sometimes it makes me cry.

The fact is we ALL know that my eventual journey will depend on many things.  My body.  My attitude.  My doctor’s skills.  My ability to reduce potential causes.  The environment.  The plants I eat.  How much damage has been done to my cells.  My genetics.  Planet alignment.  The number three.  How many carcinogens I absorb.  Too much red wine or not enough.  Sheer dumb luck.

100% of my survival is not up to me.  That’s like saying 100% of your survival on the roads is up to you.  Sure your driving skills play a large role, but are you responsible for all other factors?  The truck driver who jack-knifed because some asshole cut him off?  Road conditions?  That flash flood?  The tree that got struck by lightning?  The sinkhole that swallowed you up?  Did I not pray enough if I die?  Or do only the good die young?

Will I live my life saying every day that “I have cancer”?  Hell no.  But forgive me when there are days that I feel this way.  Cancer is not something that ever really goes away.  The Big “C” attaches itself to you like a lurking shadow.  The only way I know for a fact that I will be a survivor is if I am cancer free on the day I die.  Even when I am declared NED – No Evidence of Disease – that is the medical term because they don’t promise I’m “cancer free” … I’m only “cancer free today.”.  In fact, post-treatment can be a very traumatic time.  I’m no longer under a doctor’s constant watch.  Yes I will get poked, prodded, scanned because they are looking for something.  Waiting for results will make me crazy with post-tramatic stress.  Flashbacks.  Fear.  Rehearing the words “you have cancer”.

There are no easy cures.  Yes … I’ve heard them all.  Let’s use some critical thinking skills.  If desert berries, apple cider vinegar and moose droppings cured cancer, at least one of these claims would have been validated by peer-reviewed science – none have.  Big Pharma might be sitting on research, but they are not sitting on the cure.

I realize that people have different journeys.  Many have walked beside cancer.  But if the first thing out of your mouth is “Oh, my Mom died of that” … surely you can understand why I will back away.  My mortality is staring me in the face, and comments such as those make me feel it’s cold breath on my neck.

Triple Negative Breast Cancer is considered highly aggressive – Grade 3 – so even though my lumpectomy and sentinel node surgery were successful, no one can guarantee that a single cancer cell didn’t escape and is floating around in my body.

The average death rate over two years without chemotherapy is 40%.

The average death rate over two years with chemotherapy is 20%.

That’s why I have to endure six months of chemotherapy and one month of radiation.  There is no guarantee that chemo and radiation will fully eradicate my cancer.

Cancer could reoccur in the primary site, my breast(s).

Cancer could reoccur in a secondary site … most likely my lungs, bones, brain or liver.

The final insult?  I have a 40% higher risk of other cancers – like leukemia – just from the treatments:  Chemotherapy, Radiation, X-rays, Radioactive dyes, Scans, Medications

And if that isn’t enough, I now have other potential health concerns with congestive heart failure, hypertension, bones, skin, hair and nail problems.

The fear never truly goes away.  I’m getting hammered from all sides.

Add other major life stressors to my list:  Single Mom. Orphaned … Matthew and I have no family to turn to.  100% Supporting myself and Matthew.  Layoffs always looming around the corner.  Abuse survivor.  Failed relationships.  Especially the ones who don’t have the grace to keep it out of my face while I struggle to find my new normal.  Somedays the pileup of stress brings me to my knees.

Am I a pessimist, optimist or realist?  Can I be all of them as long as I spend most of my time in the optimist and realist spectrum?

Cancer has stripped away the transparent layers and left my vulnerable self.  Like a lobster shedding it’s shell, I need to rebuild my new shield.

I realize I can’t stay in my negative headspace forever.  If I am still complaining like a broken record about what chemo did to me twenty years from now, then maybe you have a reason to slap me upside the head.  But not while it’s fresh and raw. I have too many fires going.  I’m doing my best to keep my head above water.  Some days I slip under.

Before you quietly back away with no idea how to talk to me … all you have to do is listen. To validate someone’s feelings is to accept them.  It’s as simple as that.  When we validate someone, we allow them to safely share their feelings, their fears, and their thoughts.

I hear you.
Wow, that is a lot to deal with. What can I do to help?
That must really hurt.
I can understand how you feel.
You seem pretty sad over this.
Would you like to talk about it?
I can see that this really bothered you.
What would help you feel better?
I’m sorry.
I will help you bury the body.

Until you have walked in my shoes, you have no idea how difficult my journey is.  Nor I yours.

Still, I answer to no one except God, my son and myself.

Deep breath,

Lisa

/rant over

P.S.  There was a Code Blue called in the Chemo Lounge as I published this blog entry.  How’s that for a dose of reality?

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