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Long-Term Survival and PTSD/Depression

Cacho50's picture
Posts: 4
Joined: Nov 2020

Hi fellow survivors. We are a lucky bunch. I feel lucky. In 2010 I was diagnosed with a violently aggressive Diffuse Large B-Cell Non-Hodgkins Lymphoma, went through dose-dense chemo, radiation and other madness. And I survived. I have no fear of it ever coming back. And... I'm not angry or sad that I got sick. I am grateful. 

However... 10 years later I am crippled with PTSD and Depression from my cancer experience. If I could walk you through my "phases" after I was cured, I would say I spent the first 1-to-3 years in a serious fog from chemo-brain and probably shock, completely unanchored and lost. I didn't have any heavy emotions (probably due to nerve damage) and began to get back to my life, albeit slow. The next few years I felt somewhat clearer, with a few cognitive issues, but wasn't sure how to drive this "new car" with just 2 gears, when I had previously been driving one with 5 gears. Trust me, I didn't need to go back to my speedster life. I just didn't know how to be, in this new body and mind. I slept a lot. Took a ton of naps. 

Then, around year 6-7 of remission, I began to feel definitively depressed, and began to have PTSD episodes. Not flashbacks. In fact, my cancer was the furthest thing from my mind. I would be on the bus or subway to my oncology follow-ups and I would start fights with people. Many fights. On the way back too. I'd also become belligerent or sleep for days on end around the time of year that my symptoms started. Like my body knew what season it was for me: cancer season. I started therapy, and it became clear that I was manifesting severe PTSD from my cancer year. I tried CBT, EMDR, and now am working with an LCSW who does Core Energetics. But this year my depression and PTSD became unbearable so I reluctantly went to a Psychiatrist and started PTSD/MDD Medication. I'm glad I did, because the meds work, in the sense that I no longer have episodes. 

But... I cannot move forward in my life. I am stuck. Have been for 10 years. I haven't been able to go to any in-person survivor groups, because the ones that I researched are all people just out of treatment, and I can't handle seeing them (it triggers me). 

The summary of what I feel is this: For 10 years I have been waiting for this to be over because it doesn't feel like it's over. It's as if my brain had to contort into such a twisted state just in order to survive the terror that was my cancer year. And even though I know it's over, and I am 100% certain it will never come back, my body does not know that, and my brain has never been able to un-contort out of this twisted, defensive state. I have read "The Body Keeps The Score", and other books. I have reached out to the Lymphoma organizations, to no avail. Anyone here feel the same? I am generally a calm, laid-back person, but after 10 years of survivorship, I am at my wit's end. The therapy, the meds are not enough. When will this feel like it's over?


Posts: 1
Joined: Nov 2020

Hello! I understand how you feel.  It's like the monkey never gets off your back, no? I have been clear for 14 years now, and I followed the same patterns of thought. I am overall an upbeat happy person, but I feel like the thought of getting cancer lurks over my shoulders and hides behind corners. A doc friend of mine also calls it PTSD for cancer survivors and recommends a therapist. I haven't been yet. I agree - for some reason it feels like it's never over. I love my life, but sometimes dying doesn't sound so bad because then I'd finally be a peace. If that makes sense. I do not want to die, but man I could use a day where the idea of cancer does not go through my brain. 

Posts: 12
Joined: Oct 2020

I have the same problem and the same feelings.  When I get into one of those real bad times.  I try to tell myself I am vunerable to cancer but I don't have it and try to move on.  I hate to say it but I am with you I sure don't want to die but ufortunately to get out of this head would be peace,

Posts: 2
Joined: Dec 2020

I completely understand how you feel.  I was diagnosed and treated for PMP, Psuedomyxoma Peritonei, and had the MOAS (Mother of All Surgeries) in 2007.  It was beyond traumatic and it changed my world forever.  I can no longer go back to "normal" and the things that people find important just seem trivial and petty.  I'm in a new place where I value relationships above all else.  I can say that my relationship with my higher power has sustained me the most.  Day to day I get things done and go through the motions of life.  I have friends and family, but they will not understand where I am unless they go through it, or something similar, as well.  And I would'nt wish that on anyone.  Just yesterday (13 years later) I still had this horrible hollow feeling like a huge chunk of me is missing.  I'm hoping this will get better.

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