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One Day At A Time: PTSD and Anxiety after cancer

By: Elise "Lil Sis" Frame

ONE DAY AT A TIME | BY ELISE “Lil Sis” FRAME

Sometimes it’ll just hit me all at once out of nowhere.

I’ll be in the car driving home, or walking around on my college campus and then suddenly… I’m crying. And I mean like ugly crying… hardcore sobbing with streams of tears rushing down my face. My hands usually start trembling and my knees go weak. I just want to curl up in a ball and disappear. Sometimes it gets so bad I can’t even see anything in front of me. All I can think of is, Cancer…I had cancer.

And the strange part is, most of the time I don’t even really know why I’m crying about something that happened to me over two years ago. I don’t feel anything except the numbness that echoes through me like footsteps in an empty hall. But still, my whole body tenses as if I’m staring down an invisible enemy. In my head, I know I’m not in any immediate danger. My brain is telling the rest of me to get it together and suck it up. Don’t be such a baby, you’re fine now, I try to tell myself. But of course, that doesn’t help.
Something insignificant triggers a piece of a memory, and then at once it all comes back to me. Half-second memories and nightmares flood my mind, causing each breath to feel like a desperate gasp for air before drowning. I try to stay focused on the present, but visions of the past demand my attention and force me under. Needles going into my chest port, painful bone marrow biopsies, liters of neon yellow chemotherapy, blood and platelet infusions, being violently ill, wheelchairs, electrocuting pain all over, wondering whether the chemo or the cancer would kill me first, wondering if it will just come back one day anyways…

As I drop to my knees shell-shocked, I realize… I am drowning inside of myself, and no one else even knows it.

Eventually, I reached a point where I had to talk to somebody about what was going on. Thankfully, I was able to receive free post-cancer counseling therapy through a local nonprofit. Talking with my counselor about these thoughts and feelings has helped immeasurably, and I would highly recommend anyone who has been affected by cancer (whether by their own diagnosis or that of a loved one) seek professional counseling. My counselor told me I exhibit many signs of PTSD (Post-Traumatic Stress Disorder) and anxiety, but that it’s not uncommon for survivors to experience those issues after treatment ends. It hadn’t really occurred to me before that this might actually be a common struggle for many other adolescent/young adult (AYA) cancer survivors, too. Maybe I wasn’t just “being a crybaby.” Maybe this wasn’t something I could just force myself to “get over.” Maybe this was somehow… normal?

After talking with my fellow FD campers, my suspicions were confirmed. PTSD is a fairly widespread issue among AYA cancer survivors, often accompanied by other underlying issues such as “survivor’s guilt,” depression and anxiety. Not everyone experiences these problems to the same degree, and some do not experience any of them at all. But for those of us who do, these mental and emotional struggles can be every bit as crippling as the physical challenges of cancer and treatment. Unfortunately, there is still a large gap in information, research and resources available that address AYA cancer survivors’ mental health issues during and after a cancer diagnosis and treatment.

First Descents plays a crucial role in filling part of this gap by providing AYA cancer survivors with the chance to connect with one another and find healing through incredible outdoor adventures. FD provides survivors with a chance to redefine their physical and mental limits by learning a new outdoor skill. Furthermore, FD helps survivors reclaim their bodies from disease to use as strong, capable tools for adventure and fun, rather than seeing themselves as broken or sick victims.

I wish I could tell you that during my FD1 kayaking trip I mastered the roll, or even a simple T-rescue. But I didn’t. I was too scared to be willingly flipped over in my kayak with my head underwater. The fear of being out of control, trapped, and drowning was too overwhelming for me. At the time, I didn’t understand why. But now I can see how to a large degree, it was my PTSD and anxiety that held me back. The feeling of drowning was all too present in my daily thoughts for me to be able to enjoy those underwater exercises. I chose to stay upright in my kayak as much as possible that week, and honestly, I still felt every bit as happy and accomplished as any of the other campers by the end of the week.

That’s part of the beauty of FD. They encouraged me to go beyond what I thought my limits were (both physically and mentally), but they never forced me to do something I didn’t feel safe doing. The motto of the week was, “Choose your own adventure.” For someone who hasn’t had much say in what’s gone on in her life, it was refreshing to have choices.

I learned tons of valuable lessons about myself and about life in general during my week on the water. I learned that life will throw you rapids, and sometimes your only option is to ride straight through them. They may end up being the most fun thing ever, or can be as scary as hell. Either way, it’s up to you to decide how you’ll tackle those rapids and what your mindset will be when riding through them. Your mindset probably won’t change your circumstances, but it certainly will change your experience of those circumstances.

I also learned that my body is stronger than I thought it was. I am (surprisingly) not made of glass! Or cancer! Who knew? After my week on the river, I was inspired to spend more time outdoors enjoying nature and being physically active. So I started out simple by go for long walks, then I started running, then I moved on to horseback riding, and soon I hope to get back in the kayak and master those skills I wasn’t ready to try before.

With PTSD and anxiety, there are good days and bad days. Counseling, friends, family, writing, art therapy and being active outdoors have all played a part in helping me outnumber the bad days with good ones. As I apply the lessons learned on the river to my everyday life, I’m finally reaching a point where I can roll myself upright from the waters of a bad day. I’ve finally found the creative outlets, resources and people that can help give me a T-rescue when I feel the rapids of PTSD pull me under. Even though the panic attacks and episodes come every now and then, they don’t scare me as much as they used to. I’m getting stronger, one day at a time. And who knows? Maybe, just maybe I’ll go on an FDX trip soon, and I’ll be able to roll and T-rescue with the best of them. After all, I’ll have had lots of mental practice. 😉

Elise Frame (“Lil Sis”) is a 23 year-old student at the University of Texas studying Communications with a focus on Nonprofit Development. She was diagnosed with acute lymphoblastic leukemia at age 20, but recently finished chemotherapy and was declared cancer-free in October 2014. Elise participated in an FD1 kayaking trip last summer and discovered a previously unknown love for the great outdoors. She now enjoys stand up paddleboarding and kayaking on Town Lake in Austin, Texas, where she currently lives. As a passionate young adult cancer awareness and prevention advocate, she has served as an intern at The LIVESTRONG Foundation, and currently contributes to The Huffington Post’s young adult cancer blog series, “Generation Why”.

5 thoughts on “One Day At A Time: PTSD and Anxiety after cancer”

  1. Hello, I am very happy you have overcome you illness and anxiety issue. I have a 24 year old grandson who was diagnosed with stage 4 Hodgkins Lymphoma at age 9. Physically he is cured but the anxiety and depression are keeping him from having a normal life. He tried prozak and it worked for 7 months. Other than that only talk therapy. Need help. If anyone knows where he should go or who to see please help.

    1. Did he find any help? My nephew is dysfunctional from fear, anxiety, depression and panic attacks. His oncologist has been no help. AAcute kymphoblastic lymphoma, 3 years after treatment ended. He’s 20. Psychiatrist over medicated him until he went off all RX AND IS STRUGGLING. No help. Counselors want to do the erdm light treatment which he hates and says it does not help.

      Rock climbing? Really? Chemo left him with osteonecrosis in spine and .hips. He can’t even drive now, panic attacks. No one is interested in helping him and he knows it. He wishes the cancer killed him so he didn’t feel this way. Heartbreaking.. some family have rejected him because he can’t just get over it and move on. They know people that are doing great, blah, blah blah. Broke his heart.

      I HAVE NO IDEA WHERE TO TURN FOR HIM! The COG site says there is help avaialable and he doesn’t have to do this alone. Really? Where? Who, when? The oncologist doesn’t acknowledge the treatments, side effects, trauma destroyed him. But you read these blogs and it is widespread in these teenagers. A nightmare, a damned living nightmare for him after a living hell of 2 1/2 years of agonizing chemo EVERYDAY and almost dying at least 3 times. He had Tcell ALL, so if he relapses, he has 20% chance of survival according to his doctor. Wonder why he’s stressed out? Yeah.

      1. I just so happened to read this article tonight, and I saw your post. My heart goes out to your nephew. I’m a survivor of head and neck cancer. I was diagnosed at the age of 26. Though I’ve been cancer free for a few years, I live with overwhelming anxiety and horrible flashbacks. (Not to mention the physical limitations that are a result of the treatments I underwent.) I’ve often been in a similar mental state as you describe your nephew being in. And yet it’s difficult…almost impossible…to find anyone who understands that kind of fear. I’m responding now because I’d like to offer that understanding, for what it’s worth. If your nephew would ever like anyone to talk to, I am here to listen. ([email protected])

  2. I loved this story. My mother is a cancer survivor, she had stage three colon cancer and is really struggling after she received a clean bill of health. All of us want to celebrate but she is terrified of every stomach ache, pain and twinge. I want to help her find someone that knows what she is going through as I don’t think I am saying the right things. It would be wonderful to get her involved in a group that could offer her the support she needs.

  3. I am so grateful to have finally found a group like this! I have been searching for YEARS!!! I was diagnosed with Non-hodgkin’s Lymphoma when I was 19 and it has been such an interesting journey since. I have struggled with understanding my role changes, struggled socially in connecting with others who care about things that I feel are pointless, professionally struggled to find my voice and purpose, felt hatred and betrayal of my body and had body dysmorphia, and had difficulties with anxiety…which I have always felt correlate directly with my cancer experience. I have never felt the same since, not to mention I am now constantly fearful of things.

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