I wanna talk about something. . .you know, like I do. . .something about cancer that is rarely talked about among fellow patients, as education for the newly diagnosed, within caregiver groups, and that is the vulnerability of and in cancer. And how very traumatic it is.
Now, I know this is a totally uncomfortable topic, but I beg you, stick around. Keep reading. The reason I want to talk about it is because it’s hard to talk about and yet, vitally important to talk about and create space for.
And let me also say that while I believe the vulnerability in cancer to be traumatic, I am not insinuating that we should avoid vulnerability because it is traumatic. 10000000% I’d say that for me, vulnerability is where I live and learn the most. Vulnerability is valuable and I am deeply grateful I embrace it. In this, I also want to shine a light on 1. Vulnerability trauma is real, 2. It is okay to call it traumatic, and 3. The need for listening with compassion and empathy to validate this trauma experience.
Vulnerability Trauma is Real
My LITERAL life is in the hands of another human. Trusting their expertise. Trusting their efforts. Trusting they care (like REALLY care). Trusting their education and research and continuing education and commitment to excellence. Trusting them to show up and give me their best when it’s my turn to be in their office or on their operating table.
Being touched. In all of the intimate places. But not in intimate ways (or at least I trust that to be so. See above…) It is massively confusing for the primitive brain and the physical body to know which touch is which.
To help you empathize, next time you take a shower, consider the following:
- What would it be like if touch, even your own, isn’t safe?
Due to my experience, I have significant sensory overload. The trauma from all of the touching makes it so I literally cannot shower without my body experiencing all of my physical trauma triggers. The water alone is too much. - Look in the mirror.
Until I was in breast cancer, I didn’t realize that a Plastic Surgeon comes with the “reconstruction process.” That that PS sits on a chair in the exam room while I stand up, BUTT NAKED, in front of at least one mirror, and then that PS sits back and looks at my nakedness. Taking it all in. All my insecurities literally on display. And then that PS pulls their chair up closer and touches. Breasts. Lovehandles. Butt. Thighs. “Okay, spread your legs for me.” Inner thighs. Allll the way up to that crease. He’s objectively assessing the quality of my fat which requires him to rub it and squeeze it, working in his mind where he can harvest it from to transplant it and be successful. Of course, this isn’t weird for him because this is what he does for a living, but for me, no one else but my husband has touched those places. And for very very different reasons. While my surgeon’s brain is professionally and methodically mapping out his plan, my brain is doing its best to compartmentalize what is what…all while my husband sits in the same room trying to make sense of all that he is seeing and feeling, too.
Emotional connections. It’s a weird thing to connect so deeply with the very people who are there to keep me alive because they can’t connect with me in the same way…how could they!? I’m one of hundreds of people they are keeping alive. More confusion for my brain to muddle through. Boundaries and responsibility and power and duty all becoming very fuzzy.
I’ve become a burden. Which makes my relationships inevitably change. At no point did I ask to be in this medical crisis, yet I feel responsible for the hurt caused by it. And I’m helpless in that. So, I almost always feel like somehow I’ve let the people around me, that love me, down. Not to mention, it is so very difficult to ask for help. “Please help me shower.” “Please help feed me.” “Please still love me when I’m ugly.” “Please don’t leave me.” And when I ask for help, I’m at the mercy of however that person helps and whether or not there are strings attached.
The role I play in my own illness. I’m told to eat right, exercise more, sleep enough, reduce my stress, pray harder, believe better, ask for help (but see above)…insinuating that I brought on my own illness because somehow, I’d gotten all of those things wrong before. And then if I still don’t do any of them (because I can’t), I’m not trying hard enough or doing enough. Therefore, *I* am to blame. Am I? Is any of this true? Have I failed myself and everyone who loves me? Fighting those demons is wretched.
Grief. Grief is often tied to trauma of some kind. And to grieve is to admit vulnerability. Considering the stigma around grief, this is impossibly hard. Death grief is excruciating at best. Non-death grief is ALSO a very real thing, and ALSO excruciating at best. And then there is the whole element of anticipatory grief. . .
Facing one’s own mortality. Sitting at the table with death and having a conversation about one’s own fragility is the textbook definition of vulnerability trauma.
Self-trust and the process of risk assessment. This, this is a sticky wicket. My body let me down. I’m also supposed to celebrate it for its resilience. That’s confusing. Especially because I don’t ever have a day where I don’t feel like total poo….4 years after treatment and counting.
Furthermore, the decisions I have been forced to weigh, consider, get 1st, 2nd and 3rd opinions on, make pros and cons lists for, and ultimately choose are nothing short of enormous: Life. Death. Chemo. Radiation. Surgeries. Medical menopause at 38. Reconstruction. This decision-making, in and of itself, is ALL nine of these vulnerability traumas combined. Critical decisions, minute information. And the kicker – looking back, none of them panned out the way they were supposed to. NONE. Sooooo, how in heaven’s name am I supposed to trust my ability to decide ever again?!
It’s Okay To Call It Traumatic
Consider the trauma of domestic violence or trafficking. Car accidents or the death of a loved one. Abuse or the crisis of not being able to provide basic needs or having them met. Vulnerability trauma in cancer, both obvious and not so, is real just like all of these others and I want to be a voice for normalizing it as much as we do any other trauma.
The cost of my survival is high and surviving is hard. (PS. Being grateful and devastated can coexist so don’t come for me). Why – because every day is colored by these experiences. And these experiences of vulnerability are traumatic. Trust, relationships, decision-making… Mortality and life’s fragility… The shaky resolve to keep showing up knowing that more of this exists… I will never be the same because of all of this and in order to process it, to create meaning in it, to keep healing and to continue to have the resolve to keep surviving, I must speak of this truth.
The Need for Listening with Compassion and Empathy to Validate the Trauma
Rarely do we talk about the underbelly of cancer. The stuff that lingers for forever. The experience that goes way past “the brave battle” and the “inspirational fight” of treatment (which, PS, is an interesting metaphor that I’ll address in another post before October is over). But what I’ve written about today IS cancer and for many like me, these experiences leave a forever mark. This doesn’t mean we’re stuck or incapable of hope. It doesn’t mean we are wallowing. It doesn’t mean we are attention-seekers or trauma/drama-junkies. We have been cut to the core and simply need your willingness to listen, to show compassion, to be empathetic and to validate our experiences of trauma just like you would for any.other.trauma.
As always, thank you. 💛
Dear Amber,
“Rarely do we talk about the underbelly of cancer. The stuff that lingers for forever. The experience that goes way past “the brave battle” and the “inspirational fight” of treatment (which, PS, is an interesting metaphor that I’ll address in another post before October is over). But what I’ve written about today IS cancer and for many like me, these experiences leave a forever mark “
Very thought-provoking, disturbing but true portrayal of cancer, as only felt by patients. After reading your last few articles, I am wondering whether our decision to undergo the torturous treatments is ok ?
When my Surgical Oncologist decided to remove my large tumour in pancreas, explaining the complicacy and after effects, I have decided to live with it rather than spending rest of my life visiting ICU. Luckily now, there are new procedures like Targeted Therapy, Immuno therapy etc which are very comfortable to undergo without surrendering our anatomy to the surgeon. They do not assure “cure” or “victory” over cancer, but help to control it, avoiding further spread. At least, one can expect reasonable quality of balance life—as even the normal old procedures cannot guarantee. So, I insisted on Targeted Therapy instead of Surgery—fortunately accepted by the Team of Oncologists examining me.
When I recently visited the Surgical Oncologist, who proposed surgery in March 2017, he is pleasantly surprised to see me not only alive but in reasonably good state for almost 6 years so far, without undergoing surgery !
To make sure that my family “ care givers” do not again make the mistake of admitting me for old procedures, I made a “Living Will “ , stating my wish to be left at home and not shift to Hospital, when I become sick and unconscious. I have shown it to my family and to my Oncologist , to respect my wish.
Yes, considering the likely inevitable trauma, is it compulsory to undergo the treacherous treatments, with no guarantee of its recurrence later, all the time scared and feeling vulnerable ?
Can’t we decide to live with it, with some less tedious options , protecting our dignity and quality of life ? I have lots of Articles by eminent Doctors ,concluding that majority of the surgery and Chemo for cancer are unnecessary , causing more ill-effects than when left to the natural healing mechanism of the human body, provided by God.
Kindly consider these auxiliary riders to your experience and mention in your next Articles, as only you can do.
Blessings
Ramana
India