Wednesday, July 16, 2014

I finally got the hog skull clean and got another Cancer Buddy.

Our network reaches around the world. It is above the law, beyond the government, and untouchable by the church. No power in the 'Verse can stop us.

So I was talking (ie, emailing) to my newest Cancer Bud tonight, and I twigged hard on something she said to me: that her dread of chemo was "just me feeling sorry for myself." It kinda set me off.

Back when I was recovering from having my mouth resected, I posted something in which I vented about feeling sick, and tired, and not knowing what was going to happen, and being in pain. And a very well-meaning commenter pointed out that I should suck it up and deal, because after all, my tumor was minor and I was going to live.

Which was true. It was also about the wrongest thing, I've since learned, that you could say to anybody with cancer.

Instead, you should encourage them to feel like shit about their diagnosis, because their diagnosis is shit.

It doesn't matter how "easy" a course a person with cancer has, or how "minor" their tumor is: from the moment you're declared free of evidence of disease, that is the best you can hope for, ever. I will never be cured. I will always, I hope, be NED (no evidence of disease).

Every dentist's appointment, every visit with my surgeon, every MRI or CT or plain old doctor-poking-at-my-neck exam is fraught now. I used to enjoy getting my teeth cleaned. Now I wonder if there's something that I've missed in the week leading up to it, and wonder if there's something that *they* missed in the week after. Those feelings do go away, of course, but they ramp back up in the month or week or day before another appointment.

Even something as simple as biting my tongue in my sleep--and I'm a terrible tongue-chewer--makes me paranoid to the point of spending dozens of minutes in front of the mirror, yanking my own tongue back and forth and peering at it.

So, yeah. This fall will be four years. After five, I'm good until twenty, given the statistics, unless more people get my sort of cancer and the statistics change.

And I am still allowed to feel sorry for myself if I wish, because that's how you integrate something like this into your life.

As I told New Cancer Buddy, eventually some ridiculousness about your situation will make you see the humor, however dark, that's there. You'll stop your pity-party and get on with things. . .but that pity-party, that grieving for the way things were before you had to put in a prosthesis or before you lost your nipples or your thyroid, is important. It helps you reconcile the way things used to be with the way they'll be from here on out.

Being brave--or being expected to be brave--is a horrible burden to place on somebody who's going through this, no matter how minor or low-grade. Everybody needs the freedom to flip the fuck out, and people with cancer are often denied it--"brave" is seen as the only truly acceptable way to deal with the diagnosis.

Years ago, there was an article in the "Onion" headlined something like "Local Man Fails to Put Up Brave Fight In Face of Cancer Diagnosis." That's how ingrained the Brave Thing is.

So, fuck Brave. I may be deeply disappointing Sara Bareilles, but I say flip out like you need to flip out. There's always time later to pick up the pieces.


Anonymous said...

Here's another funny about having the right attitude. I hope you enjoy it.


Kaye said...

I'm so happy you said it's ok to have a pity party when you have cancer - i felt down on myself after I had a mastectomy for breast cancer and sunk into a funk about how I looked when everryone thought I was blessed to be cured of cancer. All I saw was this crater in my chest. Thanks for validating how I felt, i'm ok now, 6 years out, and I had a reconstruction (which by the way is great but reconstructions don't actually have any sensation so it ksn't exactly the same). The dread part with each subsequent exam does get better though.

messymimi said...

You feel what you feel, and that feeling is right for you. Be brave if that's what you feel. Have a pity party if that's what you feel. Feel perfectly normal and healthy and happy if that's what you feel. And anyone who tells you different, well, that's that person's feelings and that person should keep quiet about them around you! And around me, too.

Facing Cancer said...

Totally agree - better out with those emotions than keeping them all in. No need to feel shame - screw shame. Feel what needs to be felt. ~Catherine

Anonymous said...

Some days you want to wallow in it; some days you don't.
--Queen Anne's Lace

Anonymous said...

Yes!!! Surely if there is one time we should be allowed to do whatever we think we need to do, it's when we are wrestling with a cancer diagnosis. Those dark moments are, sometimes very, very dark, and we all have our own ways of trying to conquer them. Definitely not the time to tell us we need to cheer up and deal with it. Actually, I think that happens because the "sympathizer" doesn't know how to deal with the dark side either, and would be much more comfortable if the patient could only be brave.

-lurker with a history of brain cancer

Nurse Dee said...

I think getting a diagnosis of cancer is like death - you grieve and go through the stages of grief... and I think those around you do as well.

Problem is is that there's no handbook out there to really help one with the feelings - everyone feels differently than another.

Getting the diagnosis and handling the diagnosis are two very different things. I think that unless you've had cancer, one should shut the hell up about how one should feel because they've never been in those shoes before and have no idea what they're talking about - it's one thing to sympathize with someone, it's another to empathize. Same as a mom losing their child, having to have an abortion, having a miscarriage.... it's the same sort of thing, just a different pile.

I agree with you - I think losing your shit can be very therapeutic. I think a person should have a pity party - cancer is a pitiable thing - it's not like it's something that somone "wants" - it's a terrible diagnosis and something that once you have it, you will ALWAYS have to face. I give props to you and others who have to face the cancer mirror because it's not easy to overcome.

Cartoon Characters said...

It's difficult when historically it's been me as an RN telling people "it's ok to feel the way you are feeling"...Your words meant the world to me and helped me to accept my emotional reaction as normal and ok. Thank you.

Anonymous said...

I agree that being told to suck it up and deal is not helpful (ditto anything about 'God's plan'). Even less helpful is being told how something you did wrong (that the other person is doing right) caused your cancer. I do not think lack of exercise caused, or that copying my friend's exercise program could prevent, my breast cancer, or the kidney cancer that preceded it.

What really helps in dealing with it is 'tincture of time' - just enough days passing so that you realize you're thinking less and less about your diagnosis and more and more about where you want to go on vacation this year.

PS I so enjoy your blog posts and wish you had band width to write them more often.

RehabRN said...

Yes, as Nurse Dee says, life doesn't come with a handbook.

So asking for a heaping STFU is a pretty darned good intervention IMNSHO.

(Never been diagnosed, but with my family history, the numbers say I have a really good chance.)

Kudos to you all. Bravery isn't shutting up or putting up, some days, it's just getting up.

I salute you!

Anonymous said...

I am a firm believer in flipping the fuck out...js

Elaine said...

I like pity parties, I'm Irish, I like any party. Oh and once I had a tshirt that said- "Life's uncertain, eat dessert first!" I wish I hadn't outgrown that shirt...