Imagine my surprise when they went down the list, and I heard listed nearly every mental and physical effect that I felt after my cancer diagnosis and when I found out the cancer was back. Everything from muscle cramps and nausea to feeling disconnected and memory issues. Additionally, physically, I repeated many of the same uncomfortable side-effects after the second event that I had after my cancer diagnosis; trouble sleeping and, well, ... let's just say my body takes the phrase "scare the crap out of" very literally. I had originally blamed many of those short-term physical effects on anesthesia or surgery. The long term ones, like reliving memories, intrusive thoughts, and finding it hard to cope with various facets of daily life were more difficult to explain away, but I tried blaming "radiation brain." It is similar to the more popular "chemo-brain" and suitable for those of us who haven't had chemo.
I can't say for sure, but if I had been provided with that same list after my diagnosis, maybe it would have been easier. Just maybe I would have known that what my mind and body were doing were not unexpected, and even if they weren't "normal" to me, they weren't totally out-of-bounds, and I wasn't loosing my mind.
Since this experience a couple of months ago, I have mentioned it to several other cancer survivors and they have confirmed that they have either had some of these symptoms or been diagnosed/treated for PTSD or other anxieties. With a bit of research, I found that, according to wikipedia, "In young adult cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of post-traumatic stress disorder (PTSD), and 45% to 95% displayed at least one symptom of PTSD.[14]"
I had to go back and read that again. I even went and read the referenced article.(The internet is amazing!) - Depending on the criteria, 45 to 95% of people in my age group who were diagnosed with cancer also had symptoms of PTSD! And yet, no one mentioned to me that it was even a possibility, or how to deal with it if it happened. Until recently, my doctors barely seemed to ask how I was coping with a cancer diagnosis, and they didn't offer much in the way of non-medical support.
To be clear, I don't think that what I am dealing with qualifies as PTSD, and most of my symptoms have lessened or disappeared. I still have anxiety around scans and doctor's appointments, and I know that I will have to deal with more when I eventually have to face worsening health and treatment. For now, though, life is good, and I think I am handling the whole thing, if not really well, then well enough.
So, I guess my point is that cancer (and life) is hard, and stressful, and everyone copes in their own way. Some ways are better than others - the counseling usually lists drinking and illegal drugs as particularly bad ways to cope. Whether you've been diagnosed with cancer or gone through some other traumatic event, life can be hard! If you need help, please ask for it. Find someone (a friend, doctor, pastor, counselor, etc.) to talk to. If they don't listen, find someone else. Don't give up; it is too important.
One last thing, I don't trust myself to remember the whole list of side-effects and coping mechanisms that were listed that day, so I will include several links below that will have descriptions of PTSD and coping mechanisms.
the links I promised:
WebMD's description of PTSD - check out their other links about PTSD, too. Lots of good info.
psychcentral.com's "official" definition of PTSD
cancer.net's description of PTSD in cancer patients
huffington post's article about PTSD and cancer.
wikipedia article I quoted above - for "cancer survivor"
1 comment:
Omg, I feel like I am reading my life's story here through so much of what you have described. I suffered many of the same symptoms following the lengthy misdiagnosis and aftermath of cancer treatments. I suffered so much anxiety and memory fog I honestly thought I was dying. It was enlightening to finally be diagnosed with PTSD. I'm doing so much better now that I have sought counseling. I had always associated PTSD with those who had served in the military, but after a lengthy discussion with the neurologist it actually made so much sense. Like you, I too wish that someone had given me a heads up what might lie ahead in this aspect and helped me know I was not alone. Could have possibly spared me many tears shed and several horrible panic attacks. Thanks for sharing this important message with other survivors!
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