Recently, too recently, I had someone very close to me make the statement that I no longer have cancer. Based upon so many things that seem to be happening all over the place, I am either like the person in that song or somehow there are chalkboards every way I turn.
Clowns to the left of me, jokers to the right here I am, stuck in the middle with YOU (and yes, that would be all of you because I know you get it).
I get that bone chilling feeling from the base of my skull all the way to my toes that occurs when something grates on my nerves like nails on a chalkboard.
Some time ago, I made a sarcastic reference to this phenomenon of “you’re done” and, despite my brain challenges, or perhaps because of those very same challenges, I recall thinking,
What? The minute the last chemo needle is yanked, it’s over? SERIOUSLY??? You must be kidding me, AND you really should step away, particularly if there is a sharp knife within reach. Or better, an IV line with some poison to infuse.
I want to say “jokes aside” but this really isn’t a joke. It’s more along the lines of, “You’re an epic asshole.” But I don’t say that either. I’m diplomatic but I’m tired of explaining. Yesterday, as I finished my last follow up appointments for this year, I shared a brilliant article from The Guardian, Why Cancer Isn’t Over After You’re “Cured” and it drove home plenty of excellent points.
Here’s the thing. Everything in life is about perspective. Yes, I realize that someone will always be in a worse situation than I am in and others will be in far better situations. However, simply because someone else is worse off, must I minimize my own feelings? And if that’s the case, I’d really like someone to give me a reasonable, logical explanation and one that is not detrimental to my mental well-being.
This tyranny of hope thinking (those are not my words and have been used by many) is wrong to thrust upon another. Even if you believe you are being helpful, as I do think most are not ill-intentioned, we need some ground rules. I offer, as a starting point the following.
Helpful is listening to someone when they are having a moment. Or several. Even spanning many days. Just. Listen.
Helpful is not trying to understand that which you can never understand. Even if you have exactly the same illness and are in similar circumstances, are there back stories that you may not know? Expect that there are back stories. Perhaps there’s a kid dealing with a mental illness or a mother whose very same disease metastasized after too many years or maybe there has been a betrayal, the worst possible betrayal, repeatedly, by the very person who should have had your back and was really never there at all? It could even be all of those things, at the same time, in the same person. Yes. If that string of thoughts brought a question to your mind, the answer is yes.
Helpful is not reminding someone It Could Be Worse which is a subtle, or not so subtle way of thrusting a negative opinion on feelings they may already have guilt for feeling.
The list goes on and on and if you wish to add your own feelings, feel free to use the comments. I don’t need to go any further with that. I think the point is clear enough.
I live with something known as cPTSD. Likely, many of us live with this in one form or another. Like most conditions, ailments, illnesses, disorders, diseases, it’s a spectrum. Oddly enough, the best place I’ve found to explain the phenomenon is a site known as Out of the Fog. I’m still In The Fog so yes, it’s a little bit funny (cue Elton, sorry for the ear worm). It’s worth checking out.
When you don’t know what you are talking about, shut up or take the time to learn so you can truly be supportive. Don’t tell a cancer patient, especially not a breast cancer patient, “You’re cured.” Do not EVER say, “You don’t have cancer anymore.” Or, act quasi-surprised and query, “You still have cancer?” I have notes in a journal. I shared them with an online support group and I just found them. They are from 2007. My oncologist told me in our last regular appointment post chemo, “I will never say you are cured because we just can’t know.”
Each time my reality is minimized, the scabs I’m trying to heal are ripped right off. I’ve learned to live with my reality and process what I must to move forward. As long as that’s the reality, there will be moments. The key is to acknowledge the feelings or the thoughts. Process them and let them go to the best of your ability and in the time frame that works for you.
Do I hold on to those thoughts? Absolutely not. I live each day, facing challenges, rejoicing in milestones, appreciating the simple moments, watching a beautiful sunset, being mesmerized by the roaring waves of an angry sea, laughing with people I know and love and also with some I’ve only spent a short time with, anticipating special events, spending ordinary moments with my family, loving deeply, crying tears of sorrow and tears of joy.
Do I have those thoughts? Positively yes. I don’t live with those thoughts every day despite the fact that I am entrenched in the world of cancer advocacy. I have those thoughts when I’m facing my yearly check ups, when I’m sitting in the chair for a blood draw, when four different doctors poke and palpate every conceivable lymph node, and yes, sometimes a random thing will trigger a thought when least expected and those are the worst. They creep up and you don’t see it coming. But when that happens, I am gentle with myself. I do not beat myself up. I accept that we are, each of us, in this moment, a conglomeration of every past moment and whatever we experienced in those moments. The good, the bad, and the ugly. Cancer is a pretty big ugly.
As an afterthought, for those who presume that advocating is a form of not letting go of the disease, you would be entirely wrong on every level. Advocacy, despite the pain that happens with every death, every set-back, is not depressing. There’s a difference between sadness and depression. Being sad is life. Show me the person who is living a perfect and happy life, every day of their life, and I will show you a liar. We all have something. Some people are hell bent on hiding every blemish. I have limited patience for those who would claim perfection. Choosing happiness and acceptance in the face of adversity, that’s perfection. Having the option to pursue a passion is perfection personified.
Those who choose any form of advocacy are following a passion. Advocating is the exact opposite of holding on to something that is a sonic boom in the scheme of life-changing events. Advocating does not make me Cancer Girl, it makes me someone who is determined to leave just one person with more hope today than they had yesterday. Advocating is acknowledging those in far worse situations and making sure they know that I have their backs. And selfishly, advocating is a way of taking back control over that which I have no control, so that I can dispense with the worrisome thoughts. For those who have suggested I am cloaking myself in a cancer blanket, just stop.
If this post is making you squirm, even just a bit, now might be a good time to look at the reflection in the mirror. Unfortunately, those who should be squirming more than just a bit, will never see these words.
AnneMarie Ciccarella is a patient advocate whose interest in research has provided her with opportunities to serve on grant applications, sit on peer review panels and most recently, mentor a group of advocates at the annual AACR meeting. She has been invited to speak at a number of science meetings to share her thoughts about how patients and researchers can work together more effectively. She uses social media a bit more than she might like to admit but realizes its power to amplify a message and connect with people otherwise inaccessible. She is the author of the blog Chemobrain: In The Fog.