Another year post-cancer diagnosis—still NED (no evidence of disease), still grateful, still pissed off!
(An audio of this post is available via the library.)
That pretty much sums up where I’m still at 11 years out. Yep. 11 years out. That’s me.
Every spring about this time, I find myself in a reflective sort of mood about this entire cancer shit show, which is what it is. A journey it is not. (Some choose to use the word “journey”, which is fine. It just doesn’t work for me.)
I decided to share a few random thoughts at 11 years out.
So, here we go.
1. That whole idea of cancer being a wake-up call and a priority shifter still grates on my nerves. Pretty sure it always will.
Before cancer, I was wide awake, thank you very much. I already had my priorities straight. I didn’t need a reminder to slow down or a nudge to remember to stop and smell the roses either. Pleeeeze.
2. Positive thinking will not cure cancer or determine if those darn little cancer cells will decide to metastasize or not.
Sometimes, people assume my resistance to the Positivity Pushers means I’m a pessimist or a doom and gloom sort of thinker. This just isn’t true.
We don’t have to choose sides. It’s not optimism vs pessimism. But even if you are more of a pessimist, that is still okay. Your way of looking at the world is perfectly valid too. (Especially these days.)
I live in the Land of Realism. I’m most comfortable there. I am not comfortable in the Land of Everlasting Optimism.
You get to decide where you feel most comfortable residing too.
3. Even at 11 years out, my cancer experience is far from over. This is just the nature of the beast.
My life changed. For good. You can’t go back and there are still things (and people) I miss and yes, grieve for. This does not mean I am wallowing, or stuck or attempting to rewind my life.
Is cancer done with me? I hope so. Only time will tell. Am I done with cancer? I am not. Some understand this differentiation. Some do not.
The fallout continues. Cripes, I had an 11-hour cancer-related surgery just last summer. Every day when I take a shower or get dressed, I look down or in the mirror and am reminded, oh yeah, that happened.
The collateral damage from breast cancer treatment is a big deal.
This is not feeling sorry for myself (though I still have those moments too), nor is it being pessimistic. No, it is reality.
A cancer diagnosis brings trauma, and that trauma, or the remnants of it, doesn’t necessarily end when treatment ends. (If you’re “lucky” enough to have an end of treatment.)
Although every cancer patient’s specific experience is unique, that shared sense of trauma and all that that entails is something most of us relate to. That’s the invisible bond—understanding that trauma.
4. I will go even further and say something that’s gonna probably get some riled up, but it’s worth saying nonetheless. Anger and bitterness are not always bad or inappropriate.
I mean, we’re talking about cancer, for crying out loud. I’ve been plenty angry at times during the past 11+ years. I watched my mother die from the blasted disease. Too many others I care about have died from it as well.
Who wouldn’t be angry about all that from time to time?
The trick is to not stew in anger, but to put it to use. But it is certainly okay to revisit anger now and then. The “less acceptable” emotions are still valid ones, and we do feel them.
The following excerpt via @indefatigable (Twitter handle) really speaks to me:
But I will still defend everyone’s right to remain angry and bitter right to the end. You don’t have to ever let go of those. They can burn in a little corner and flare up whenever you want. It’s ok to keep them. & not just keep them – I mean really keep them. I’m tending mine carefully, feeding them little tidbits regularly and letting them out to scream and whine occasionally.
Don’t you just love that?
I sure do.
Read the entire piece, Are you in need of a little motivation??? via Never Tell Me the Odds on Tumblr.
There is something very freeing (and healing) about giving yourself permission to acknowledge the entire gamut of your feelings and to speak your truths. At least to yourself.
Don’t believe me?
Try it.
So yes, it’s okay to feel your anger—or any other emotion you might be feeling, for that matter.
5. The stale breast cancer narrative that we continue to hear, for the most part, remains unchanged.
Sure, during the past 11 years since my diagnosis, there’s been progress. But the typical narrative still pretty much goes like this:
You get diagnosed. Immediately, labels such as: strong, brave, survivor, warrior are attached to you whether you wanna wear them or not.
You’re expected to more or less smile your way through treatment; after all, it’s only a year out of your life, so what the heck. When it’s over, lo and behold, you come out the other side good as new. No, wait. You come out better than before—a new and improved version of your former self.
You’ve seen the light and voila, you’re better for it. (If not, why not?)
You might want to read, After a Cancer Diagnosis, You’re a Better Person, Right?
Then you get on with it, never look back (‘cuz remember, you’re not going that way). Sure, you’re encouraged to start sharing your cancer story but only if you stick to the script and share only the uplifting parts because who wants to hear those messier details?
After all, only optimism inspires. (I beg to differ.)
And on and on and on.
What a crock that stale narrative is.
All that optimism is exhausting.
As I’ve said many times (and likely will many more), cancer is a horrible disease, not an enlightenment program.
Cancer sucks. Period. (That’s my story and I’m still sticking with it.)
No epiphany here. (Still waiting.)
Still me. (more or less)
Still NED, still grateful, still pissed off!
Thank you for sharing this post!
Do you consider yourself to be an optimist, pessimist or realist?
How do you feel about holding on to some anger and some bitterness?
Share one or two things about your cancer experience that make you angry.
Christy
Sunday 30th of May 2021
I just want to say thank you! Came across your blog about a month ago. Reading your posts/blogs along with the many relatable comments has helped my confusion as to why I’m still so emotional. I’m not at a point where I can talk about everything (without crying) but please please know the sense of relief I’ve experienced reading everything you’ve expressed through your gift of writing has been more healing than anything else folks have “recommended”.
Nancy
Tuesday 1st of June 2021
Christy, I'm humbled by your comments. Thank you so much.
TheQuietGirl (Anissa)
Saturday 29th of May 2021
I love your honesty when writing about your journey. I sadly lost my mom to breast cancer and I agree with the part about persons attaching labels after someone is diagnosed with breast cancer. I would find it annoying for my mom, even though she was a strong woman, everything was basically out of her control. It's good to maintain positive thoughts but sometimes reality can be a real downer. Congratulations on being 11 years out!
Nancy
Tuesday 1st of June 2021
The QuietGirl, I'm so sorry to hear about your mom. I appreciate you taking time to share. Thank you.
Meredith Clark
Thursday 6th of May 2021
Stage 4 here, doing OK after two years. The few times that I express being tired of all that is required to keep me going (tests, scans, appointments, medications, side effects etc.), I never know how to respond to someone who says "Well, it's better than the alternative" meaning death, of course.
Nancy
Monday 10th of May 2021
Meredith, Glad you're doing okay. I would say, respond frankly. If people don't want to hear your candor, that is on them. Saying things like, "Well, it's better than the alternative," minimizes your experience and that is not helpful or right. Thank you for taking time to comment.
Stevie P
Thursday 6th of May 2021
Great article Nancy, and great replies too. For me those motivators and responses such as "if life gives you lemons then make lemonade" or "you're such a fighter" suck the oxygen out of me. They stop me having a space to explore feelings. I need to wander over the rocky shoreline of my situation. Sometimes I just acknowledge it's there, other times I lift up rocks to look at the creepiness below, weirdtimes I contemplate the outgoing tide (metaphor alert!). Companionship on this exploration is like diamonds and pearls to me. There are those than can accompany (thank you my friends) and those that can't/won't (and that's fine). But when I feel i'm being told how to be, how to feel, what to do, what I am .... well, grrrrrr. A friend recently lost a child and I tried to be there. Hoping not to be directive nor closing down, but being open and honest and faithful. That's what I wish from others for me. Congrats on the NEDiversary Nancy and others I hope Tarzangela's lilies and roses bloom well. I'm planting stuff at the moment - I sure like seeing stuff grow. Now I'm off to get a t-shirt printed with "still grateful and still pissed off!"
Nancy
Thursday 6th of May 2021
Stevie, Oh, those "motivators" drive me a little crazy too. "They stop me having a space to explore feelings." That's so true. Platitudes shut down genuineness. They just do. I'm sorry about your friend's child. I'm sure you've been a help to her/him. You know, that's a great idea/message to put on a t-shirt! I should keep that in mind for a giveaway sometime! Thank you for sharing.
Tarzangela
Wednesday 5th of May 2021
Congratulations on being NED for 11 years Nancy! I have just reached the 5 year mark from my lumpectomy and will have tormented my body with the evil poison pill for 5 years in September.
I am definitely a realist. Sure, somedays I am realistically optimistic and then there are other days in which I am realistically pessimistic. With the optimism, it is usually about what I can control, while pessimism usually relates to certain people who are either chronically negative or manipulative. These people are so beyond my control and they can't even seem to control themselves. I try to stay away from people like that, they drain me, piss me off, waste my time and what little energy I may have that day. And, I will say, I think I am more pissed off now then when I was first diagnosed. I know too much now. Or maybe it is because I don't know enough? Yes, I am grateful to be alive, yet I suffer from survivors guilt, too. My brother was diagnosed with stage 4 bladder cancer 2 years after my dx. He did not survive the year. He would have been 52 today, May 5th. He was 7 years younger than me. He was a realist, too. Happy Birthday, Little Bro, I sure miss you......................... Damn, I'm pissed! Yes, my anger and bitterness are mine and I keep them tucked away most of the time. And I truly believe that occasionally, you have to let it out and scream. @indefatigable you quote above said it perfectly. I have been permanently damaged. And no amount of positivity or optimism can change that. I admit it and I accept it. The trauma is mine to deal with however I can. I have a right to feel angry sometimes, as long as it doesn't affect my overall constitution and I don't take it out on other people. It is okay to not be okay today. Tomorrow will hopefully be a better day.
And I sure hope my roses bloom nicely this year. I have always stopped to smell the roses, ever since I was a kid. Cancer didn't change that. But first, my lilacs are blooming now and my lily of the valley will be blooming soon. Now those are heady scents that will lighten your mood on the darkest day! So, for now, I will just keep on keeping on. I will be grateful for the good days. I will stop and smell whatever is along the path that day and relish the aromas and memories they invoke. Well,...... as long as it isn't something I stepped in...................that would piss me off......
Nancy
Thursday 6th of May 2021
Tarzangela, You do have a way with words! Realistically optimistic. Realistically pessimistic. So true, depending on the day or circumstance. Interesting that you are more pissed off now than when first diagnosed. And yes, survivor guilt is real. I'm sorry your brother got so little time after his diagnosis. He's missed and will miss a lot of birthdays he should've had. I feel that guilt too regarding my mother. Why did her cancer progress to stage 4 so fast and so far, still NED here. Cancer is such a crap shoot. We can't compare, but it's hard not to. "The trauma is mine to deal with however I can." I like that too. Enjoy those blooms. Not much blooming here yet. Except for dandelions, of course. And yeah, we surely didn't need cancer to remind us to stop and smell the roses. That particular cancer cliché is ridiculous. Thank you for reading and sharing too.