Cancer Survivorship, Suicide, & the Lack of Support for Our Mental Health

When the battle is done, we — the patients — are left with the aftermath and that is often too difficult to carry alone.

ID: the word survivor bracketed and split up in bold font with a smaller cursive type font reading: to beat the odds, one with great courage, and strength, a true inspiration (Image from: Google Images search for “cancer survivor” from Mendocino Coast Clinics)

*That image is somewhat satirical for me and my weird humor considering how much I hate inspiration porn but it’s fitting.

Content Warning: This piece speaks extensively about suicide ideation, mental illness, chronic illness/disability, cancer, survivor’s guilt, death and medical trauma.

It’s 2021 and a random day in September. I’ve been crying on and off for multiple days on end. I am engulfed in dread, feelings of worthlessness, questioning if I’m permanently broken, or if I will ever experience life as I wish. The trauma I try to hide spills out everywhere — what the fuck just happened? What was this transplant? What was cancer? What was that diagnosis? Why were you failed so many times? You forgot 4 years have passed since your diagnosis, welcome to being 27 — I guess? What spills turns into a river, a lake, then an ocean in my living room. I barely tread water with my panic attacks. If I’ve experienced some of the lowest life has to offer, then received the miracle of a matching donor to cure the leukemia I had been battling for years, the transplant went well, and I’ve been offered things that I could’ve only dreamed of as a child, then why is that not a knockout high to me? Why is that somehow not enough? Why do I think about offing myself to the point I’ve scared myself back into therapy?

There’s shame when we, as cancer survivors, are unhappy. When we admit : yes, we are depressed, anxious, experiencing PTSD. Yes, we cannot adjust to life without the fear of relapse. We are terrified to do the chemo, the radiation, all the pain over again whether by immersing ourselves in past memories or in the fear for our futures. Everything feels impossible — like a slow drowning. Our shame is rooted in so many things — we think of how we once dreamed to be in remission so therefore we are ungrateful or we know how many others died along the way & so we aren’t using this second chance at life properly — like maybe we should’ve been the ones to die instead (aka survivor’s guilt). We are told it’s a “fight” “a battle” — we are survivors now so therefore we are gladiators, we won it all. To many, we are considered badasses or inspirational or whatever else, yet somehow it doesn’t feel like it for many of us. It just feels…empty.

Last year in 2020, the same month: September, I was crying about how my one match, for the stem cell transplant I needed, delayed donating by 6 months or more. I felt suicidal then too. Because what was the point. There’s no lesson in this kind of grief. What kind of living is this? It’s not enough. So, you can imagine I was pretty fucking surprised that I’ve been feeling even more suicidal this year than I was last year. I look at myself with disgust some mornings. I feel as though I’m malfunctioning because I should be happier than ever. My negative self-talk rears its beastly head as I punch down on myself over and over because I am “just an ungrateful shit.” My negative self-talk is also really good at forcing me into memories I am not ready to feel — like how 31 days in a hospital in isolation for a transplant changes someone — I prefer to not think about it.

The skill many of us younger patients develop is repressing. We bury. We had tunnel vision through our treatment because we had to make it to the other side of hope. We had to be able to ensure our future. Because cancer makes us sit still as all our peers move on, the world keeps turning, and we just want to keep up. Because we haven’t even gotten to experience what this life is even about. But when our future arrives, we have no idea what to do with it. That is a testament to the gravity and reverence that shrouds the golden ticket of another chance at living. For me, it’d be my third time. Often, I joke about how I’m a cat with 9 lives but I’m usually consumed with: why am I the one who gets the chances? Is it a lottery? Is life pre scripted and God watches our “episode” when it comes on? Is it fate? All of the questions ultimately boil down to: Why the fuck am I still here?

I have been told by many people that I’ve been a comfort for them through their cancer care or care for other disabilities, they talk about how me being frank and open helps them feel seen — like they aren’t alone, they talk about how my survival now gives them hope — I’m living proof of going through the ringer and making it out alive — that it’s possible to live beyond a diagnosis. I was diagnosed with advanced stage leukemia in 2017 and because I didn’t see anyone who looked like me or who had my politics talk about cancer, I decided to be what I needed so that hopefully someone else wouldn’t have to experience what I did in the first few months of my cancer battle. I became comfortable talking about my leukemia, how shit my insurance was, the instances of medical neglect and medical racism, the highs and lows, the mini triumphs, the chemotherapy failures, taking what I learned to navigate the medical industrial complex and sharing tips for self advocacy, and finally searching for a donor, transplant, followed by recovery. Some people have been following me since the start, others since 2018/2019, or summer 2020 many people trickled in. My cancer has played out in front of an audience that is bigger than my social media following as my story has been shared over and over by people & platforms with far larger followings than my own. I always said, “if I could just touch the life of one person then my job is done.” I’ve been told by more than one person I’ve helped them. Eight other lives have been saved because of people registering to be stem cell donors with the national registry under my code (text itsWalela to 61474 for more information). I should be proud of myself, I should be happy, but everything flies right over my head. I feel numb because when things are good or when nice things are said, inevitably something bad will happen — trauma will trick us into believing that.

I’ve been fine with sharing about my cancer experience to a certain extent. Perhaps because I share more than the average person then I guess what I do is considered vulnerable but there’s always this gnawing inside me, where I want to snap into myself when it comes to mental health & cancer. So much of cancer treatment, even at the best of facilities, is focused on getting you through chemo, radiation, surgery, transplant, whatever protocol and seeing you get into remission. It’s all focused on the body. Yet, our mental health is part of our overall health, it lives within our bodies too. In my experience, social workers who’ve been assigned to me have failed me in finding resources no matter how often I’d ask (likely because they have way too many patients on their plate). When it’s discussed in oncology or transplant units, it’s “exercise” and “eat well” — even on far too many websites dedicated to cancer survivor support. But we all know, those two things are not the end all, be all, of achieving emotional & mental stability. So we are left alone & often feeling utterly directionless.

When the treatment is over, the remission is achieved, and the dust settles. There’s nothing. No pamphlet. No “here’s what to expect.” Nothing. Because living *should* be enough, I guess. Nevermind that we endured being so close to death we could smell it, it was palpable, some of us had to say where we wanted to be buried (me) because it was thought we wouldn’t make it, advanced directives were regular, random and inconvenient hospitalizations were normal, many of us experienced financial stress beyond what is comprehensible and continue to in survivorship, and felt like zombies in our own home where the days blended together. Many of us try to grasp at straws for normalcy but there isn’t anything normal about this: our life has been divided into Before Cancer and After Cancer. We are not and never will be who we were before. Our bodies are not the same. For many of us, they even look significantly different. There is no normal after cancer when some relationships were entirely destroyed because of it, when careers have been halted or are in ruin, or when the slightest bruise, cut, headache, stomach pain, anything that we know to be a symptom for our type of cancer sends us into a tailspin. I mean, I can keep going but the point is: this wasn’t a walk in the park and it still isn’t. It is absolutely a battle for your life when it comes to cancer treatment, it’s mind over matter constantly, it’s shutting off emotions at times or only being able to feel surface emotions like rage masking as deep grief. How can we ever expect that a cancer survivor is going to simply “be okay” after all that?

If I’m going to be truly vulnerable about my cancer experience, then I seek to be vulnerable in my survivorship as well. I am not okay. I will be eventually. But I am not okay. I have been extremely suicidal on and off for months now. I’ve felt alone, ashamed, guilty, and frankly afraid to even admit that as my reality. There’s so much complexity to living. & heavy is the duty we carry to “make something” of this hell we experienced (especially during a pandemic).

In the 8 months that have passed since my transplant, new memories have popped up from years ago, resentment I’d been burying resurrected itself, every day I’m not doing “something” — it feels like I’m wasting time or I’m wasting this opportunity. I think of all the people I knew and knew of who died in my 3 years and 11 months of battling leukemia — how badly each of them wanted to live — and I instantly feel like a brat. But, mental health and mental illness is not bratty or selfish. Inner turmoil is the weight of being human. When we are being told we are supposed to be okay constantly, even by our own medical care teams or families/friends, we try to convince ourselves of the same myth. For many of us, it is a silent suffering out of fear of how we appear to others: we don’t want to concern anyone, or we don’t believe our feelings are worthwhile, or we downplay, rationalize, cry alone, have a breakdown or 10 alone, perhaps even start doing and acting in ways that are uncharacteristic to ourselves such as: self sabotaging.

This is a common reality among cancer survivors. For me, having cumulatively 80k followers online makes an undoing, an unraveling feel impossible with cancer or not. There’s an expectation of me. A silent projection of the “strong Black person” trope then add in being neurodivergent, having anxiety and depression and PTSD…There is nowhere for me to set my load down because I appear to carry it so well. I have fed into this because for me, I don’t want to be a bummer, I don’t want to make anyone feel worse; I want to bring comfort, and help motivate others in my shoes. I’ve also come to realize that I want people to be prepared for the very real possibility: survivorship is not going to be how you pictured or how it gets portrayed at all. It just won’t be.

I’ve found myself censoring what I literally just wrote in the past because: If I’m such a source of comfort, then I certainly can’t share that about myself; but it’s fucking true. We need to be allowed to say the shit more often: Cancer patients and survivors experience suicide ideation and/or have committed suicide, we have mental illnesses, the battle is thick with layers of complex trauma. Many of us had mental illnesses going undiagnosed prior to our cancer diagnosis — those symptoms swell though. And at times, it truly feels like our heads are getting screwed off or like we simply can’t ever be ourselves again. Many of us even fall head first into identity crises such as: who am I without cancer? For me, I was 23–3 years from 20 years old at diagnosis, now I’m 27–3 years from 30 years old, and I’m seeing, watching, learning how much I missed out on. What I didn’t realize is that those 4 years are a pretty pivotal, transitory time that I was unable to experience to the fullest — shit, if at all. Now, I question my clothing, how I talk, ask how the fuck to work Tik Tok, I realize there’s even music, TV, and movies that I missed out on, jealousy jealousy by Olivia Rodrigo becomes my theme song some days as I wish to be further along in my life, and in the midst of all this: I’m unable to relate to a majority of people my age but still adulting feels like a whole college course I missed. The longer I’ve gotten adjusted to survivorship, that list continues to grow longer.

There is far too much pressure for cancer survivors to live up to being these badass warrior beings as if we aren’t people, as if we can’t deteriorate. There’s an inherent pressure that isn’t even explicitly said but trust me, it is felt. And yes, the warrior metaphors can be beautiful and cute and empowering, but there’s a dehumanizing element to it as well. Because as survivors, we are instantly assigned to be role models, we are the strong people who conquered death’s thirst for our souls, we are who people look at and say, “damn they’ve been through so much, makes me grateful for my own life.” Yes, our mere existence and the trauma that comes with it becomes motivating factors to everyone else: never end up like how we did. We are the underdogs, the comeback story, our lives play out on social media like a damn play on Broadway. We aren’t treated as people but as a symbol of hope. & I have no problem with symbolism, but I do have a problem being reduced to simply a concept rather than an entire human being.

The best way I’ve been able to combat any of this is to enter therapy again, which I can hardly afford, and finding a solid match took a good while. I’ve entered couples counseling with my long term partner as cancer did impact our relationship. I try to be honest and consistent with my psychiatrist. Try to prioritize what makes me feel good: reading, writing, journaling, watching documentaries, playing this stupid Harry Potter game on my phone, re-acquaintng myself with Spanish via DuoLingo, meditating, praying. And sometimes, even all that doesn’t feel like enough. So when that happens, I reach out to a friend. Usually my best friend. Or I sit under a weighted blanket and cry. Or I sit on my balcony. I’m in a support group I drift in and out of as the sessions I’ve been in tend to be filled with comfortably wealthy white people with good insurance — yeah we both had cancer, but our worlds do not relate. I don’t have an answer for anything. All I know is that we are deserving of far more help navigating the aftermath of cancer and stitching our lives back together. I’m just, I don’t know, I’m on my corner of the internet, sitting at a table in Los Angeles, typing this “essay” attempting to share how I feel, what helps me, yet again hoping I’m not alone and hoping others are not alone either in reading this. I don’t have a marvelous conclusion or incredible epiphany — this is a snap shot at reality. But I will leave with this quote that emboldened me to write this thing:

“Survival isn’t some theory operating in a vacuum. It’s a matter of my everyday living and making decisions. How do I hold faith with sun in a sunless place?… I have to stay open and filtering no matter what’s coming at me because that arms me in a particularly Black woman’s way. When I’m open, I’m also less despairing” — Audre Lorde, A Burst of Light and Other Essays

Here’s a list of resources I’ve found helpful:

The National Suicide Hotline: 800–273–8255

TEEN LINE (if you are 19 and under): 310–855-HOPE

Cancer Support Community Helpline: 888–793–9355

Help With Cost of Meds: https://www.needymeds.org/

The Sam Fund offers financial help but I’ve also benefited from their resources list: http://www.thesamfund.org/

Following people online who are in a similar situation to me by looking at hashtags on Instagram related to my cancer type or transplant — I’ve actually made a couple friends this way

Please consider supporting me as I continue my recovery by either joining my patreon (lowest tier is a dollar) or donating to:

Paypal: ItsWalela@gmail.com