Are some of us going crazy? No, it may be PTSS...

An excerpt from someone who recently finished treatment...

"Her diagnosis was severe Post Traumatic Stress Syndrome. When she first said it I thought, well that’s just silly! That’s only for people who have gone to war! I told her this and she nodded and said, “that is exactly what you have been through … you have been through and continue to go through a battle for your life, a personal war.” “You are going through your own war which has taken untold trauma on you physically, emotionally and mentally!” I was so relieved!! Relieved because it was at that precise moment that I realized I was not going insane!

Now I knew that there was a name for it! So if there was a name for it, then there must be a way to treat it. There is treatment, but it was then I was told that treatment varies on each patient. As well, it is not something that just goes away after a few days, or weeks or months for that matter. You can’t just take a pill and everything will get better. This is going to take awhile. Her prognosis is that dealing with this and getting me to a place where I feel more like my old regular self will take at least a year and could take as much as five years to resolve."

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Ya I resemble these remarks.
    It did dawn on me what was going on, after I had a particularly nasty anxiety attack just prior to my 18-month PET-CT. Giving it a name helped me as well. There are a lot of techniques for dealing with these things once you figure out what is going on.

    Fight on. We will win this war, one way or another.

    Deb
  • Irishgypsie
    Irishgypsie Member Posts: 333
    D Lewis said:

    Ya I resemble these remarks.
    It did dawn on me what was going on, after I had a particularly nasty anxiety attack just prior to my 18-month PET-CT. Giving it a name helped me as well. There are a lot of techniques for dealing with these things once you figure out what is going on.

    Fight on. We will win this war, one way or another.

    Deb

    PTSD
    Being a RN at a veteran affairs and a member of the uniformed services I have experience with patients who have PTSD, and a Cancer diagnosis is definltey similiar. At a head and neck group meeting I had suggested that they needed to do more for newly diagnosed patients and the pre/post after effects of dealing with this cancer. All they seem to want to do is refer you to a social worker, and let your PCP deal with it and be done with it. :(

    Charles
  • ratface
    ratface Member Posts: 1,337 Member
    Is this the chronic stage?
    And does it become a chronic disease emotionally?, because I kind of feel this way. I mean the thought is always there for me about recurrence? I've been to psychologists and was on medication for PSTD but now at three years out it's time to come to terms with it, I think it just gets easier with more scans, good scans help, and the passage of time???

    THE CANCER SURVIVOR'S GUIDE, Michael Feuerstein, PHD, MPH and Patricia Findley DrPH, MSW , themselves cancer survivors call it :

    "The stress of survival" pg. 144 he counseled secret service agents

    "The mind set after cancer is similar to a near death experience. I have often counseled men and women who had survived life threatening situations in high speed chases and gunshot deaths of a partner. Memories of the incident made them feel hyper, tense and sad. They would avoid certain places where events took place. Some felt they could have prevented what happened? many cancer survivors experience features of the same condition. Many survivors relive aspects of the diagnosis, treatment, just as police officers worry about another shooting, cancer survivors worry about a recurrence. Then come the thoughts, when will it be my turn? that could be me. did he have the same type of cancer? each time we anticipate negative responses, such as a doctors visit, the negative thought triggers a stress response. This is known as "anticipatory stress" and it raises stress hormones. You did not realize you were under stress at first as you simply went on auto pilot, now that most of the big decisions are over the stress remains"

    He goes on to say that time does help and then gives mechanisms with dealing with the stress. There appears to be some hope for me then?
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    ratface said:

    Is this the chronic stage?
    And does it become a chronic disease emotionally?, because I kind of feel this way. I mean the thought is always there for me about recurrence? I've been to psychologists and was on medication for PSTD but now at three years out it's time to come to terms with it, I think it just gets easier with more scans, good scans help, and the passage of time???

    THE CANCER SURVIVOR'S GUIDE, Michael Feuerstein, PHD, MPH and Patricia Findley DrPH, MSW , themselves cancer survivors call it :

    "The stress of survival" pg. 144 he counseled secret service agents

    "The mind set after cancer is similar to a near death experience. I have often counseled men and women who had survived life threatening situations in high speed chases and gunshot deaths of a partner. Memories of the incident made them feel hyper, tense and sad. They would avoid certain places where events took place. Some felt they could have prevented what happened? many cancer survivors experience features of the same condition. Many survivors relive aspects of the diagnosis, treatment, just as police officers worry about another shooting, cancer survivors worry about a recurrence. Then come the thoughts, when will it be my turn? that could be me. did he have the same type of cancer? each time we anticipate negative responses, such as a doctors visit, the negative thought triggers a stress response. This is known as "anticipatory stress" and it raises stress hormones. You did not realize you were under stress at first as you simply went on auto pilot, now that most of the big decisions are over the stress remains"

    He goes on to say that time does help and then gives mechanisms with dealing with the stress. There appears to be some hope for me then?

    Attest.
    Ratface, what you are saying here really resonates with me. This does seem to be the 'chronic' stage, at least as far as I am concerned.

    I've been asked by outsiders as to whether my participation in this forum helps me, or causes me increased stress. I believe it helps me. I am comforted and reassured. We all experience the same fears and emotions after completing treatment. To a point, this is the 'normal' for us. We are not crazy.

    Deb
  • RogerRN43
    RogerRN43 Member Posts: 185
    D Lewis said:

    Attest.
    Ratface, what you are saying here really resonates with me. This does seem to be the 'chronic' stage, at least as far as I am concerned.

    I've been asked by outsiders as to whether my participation in this forum helps me, or causes me increased stress. I believe it helps me. I am comforted and reassured. We all experience the same fears and emotions after completing treatment. To a point, this is the 'normal' for us. We are not crazy.

    Deb

    Distraction and being focused on living in the moment...
    Before cancer, most of us didn't have to face our own mortality.
    We went on with our daily lives distracted with whatever it was we were doing, whether it was meaningful, productive or not. Time was free. For me, doing things with my family, friends, and working were great distractions.
    These days, it might not be as easy if some of us aren't working anymore, or we can no longer physically to do some of our pastimes.
    It's not as easy when we can feel our residual symptoms, and our relationships have or appear to have changed.
    Not as easy when in the beginning, all we felt was a lump, or we saw a peculiar spot, yet we felt well. It snuck up on us. Now a new symptom, a new spot puts us on guard. In the past, these meant nothing, they would go away, they would heal. This time, we cannot put out of our minds that they could mean something insidious.

    So what do we do to escape these morbid thoughts?
    I think one of the things we can do is to be distracted again in whatever we are doing. Live in the moment. Plan the task, be focused in it, lose yourself in it. It has to be practised. We didn't have to think about it before, we just did it. It might be something small or something big. Whatever it is, put your heart into it, like you did before. Fill your day with these moments.
    We could die from SCC, we could die from something else. It is a fact of life, nobody escapes death.
    There is no point in worrying. Worrying consumes time, and time was something we were never really guaranteed with in the first place, cancer or not. We just thought so or we ignored it.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    RogerRN43 said:

    Distraction and being focused on living in the moment...
    Before cancer, most of us didn't have to face our own mortality.
    We went on with our daily lives distracted with whatever it was we were doing, whether it was meaningful, productive or not. Time was free. For me, doing things with my family, friends, and working were great distractions.
    These days, it might not be as easy if some of us aren't working anymore, or we can no longer physically to do some of our pastimes.
    It's not as easy when we can feel our residual symptoms, and our relationships have or appear to have changed.
    Not as easy when in the beginning, all we felt was a lump, or we saw a peculiar spot, yet we felt well. It snuck up on us. Now a new symptom, a new spot puts us on guard. In the past, these meant nothing, they would go away, they would heal. This time, we cannot put out of our minds that they could mean something insidious.

    So what do we do to escape these morbid thoughts?
    I think one of the things we can do is to be distracted again in whatever we are doing. Live in the moment. Plan the task, be focused in it, lose yourself in it. It has to be practised. We didn't have to think about it before, we just did it. It might be something small or something big. Whatever it is, put your heart into it, like you did before. Fill your day with these moments.
    We could die from SCC, we could die from something else. It is a fact of life, nobody escapes death.
    There is no point in worrying. Worrying consumes time, and time was something we were never really guaranteed with in the first place, cancer or not. We just thought so or we ignored it.

    Good Friend Logic ~ Survivor
    A good friend of mine here, told me this...

    "If you die of something other than cancer, you're officially a survivor", LOL.

    I love that logic.

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    Skiffin16 said:

    Good Friend Logic ~ Survivor
    A good friend of mine here, told me this...

    "If you die of something other than cancer, you're officially a survivor", LOL.

    I love that logic.

    Best,
    John

    Easier said than done
    This morning I dropped the brown pit bull off for surgery. The vet said it was a solid mass on the left thigh. Now I have to wait for the biopsy and lab results, sound familiar? Sometimes you can escape into the moment or a family function or a good movie but life is surrounded by disease and suffering that we just never noticed to this degree. How many of you hear the mesothelioma commercials every day,or the testimonials from Cancer Treatment Centers of America, or the proton beam advertisements. The breast cancer awareness ads, or a new treatment drug storyline on the evening news. The hermit life may not be so bad. The INTERNET and social media have changed communication forever and we must adapt to the constant bombardment of cancer related stimulus and our response to such?
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    yes i am
    my answer to the question is yes i am going crazy, i blame it on radmo (chemo and radiation) with the addition of old age feeling.

    john
  • Pam M
    Pam M Member Posts: 2,196
    OK - SO I'm Not Crazy
    But, as someone I used to know would say "I ain't right". A sore throat can't just be a sore throat. For a couple weeks now, instead of being grateful I don't need as much food at meals lately, I've questioned why I fill up quickly these days, and am sorry my CT scan didn't go down farther. I'm not totally obsessed, but I think about it more than I'd think I would have. I sometimes get irritated when I forget for a while, then am jolted back cause I'm hacking something up (or trying to), or feeling like I'm choking on saliva, or trying to move my arm in a way that isn't going to work for me.

    I will say, though, that a couple days ago, a client where I work walked up to my counter to ask a question, then a couple minutes later, said - "Wow - it looks like you've had some kind of major operation". I am pleased to report that I didn't flinch or falter - I just told the man what it was. He cringed a little, and I didn't begrudge him a bit when he said "Well, I'm glad you're all right now".

    Hopefully, I won't lose it anytime soon, and squirt smokers' ciggies with a water gun, and force drinkers out of a bar, and make fat people in a restaurant order the vegetable platter. Off topic of my rant here, but I AM digging the new "advice from former smokers" tv ads.

    Sounds like a big "Wah", I know. Truth is, I'm good - checkups are NED - amazing what doesn't really bother you much after the doc says "clean". It's just that from time to time, I wander, and forget how lucky I am.
  • nwasen
    nwasen Member Posts: 235 Member
    Pam M said:

    OK - SO I'm Not Crazy
    But, as someone I used to know would say "I ain't right". A sore throat can't just be a sore throat. For a couple weeks now, instead of being grateful I don't need as much food at meals lately, I've questioned why I fill up quickly these days, and am sorry my CT scan didn't go down farther. I'm not totally obsessed, but I think about it more than I'd think I would have. I sometimes get irritated when I forget for a while, then am jolted back cause I'm hacking something up (or trying to), or feeling like I'm choking on saliva, or trying to move my arm in a way that isn't going to work for me.

    I will say, though, that a couple days ago, a client where I work walked up to my counter to ask a question, then a couple minutes later, said - "Wow - it looks like you've had some kind of major operation". I am pleased to report that I didn't flinch or falter - I just told the man what it was. He cringed a little, and I didn't begrudge him a bit when he said "Well, I'm glad you're all right now".

    Hopefully, I won't lose it anytime soon, and squirt smokers' ciggies with a water gun, and force drinkers out of a bar, and make fat people in a restaurant order the vegetable platter. Off topic of my rant here, but I AM digging the new "advice from former smokers" tv ads.

    Sounds like a big "Wah", I know. Truth is, I'm good - checkups are NED - amazing what doesn't really bother you much after the doc says "clean". It's just that from time to time, I wander, and forget how lucky I am.

    I am NOT crazy
    I am about 15 months out from treatment and two PET scans show nada but sometimes I sure get scared. I find at times when I read on here that someone has had their cancer come back the committee in my head will start saying this could happen to you. I guess that is part of our new normal that we will exist in forever...
    I tend to quiet the committee in my mind by listening to my favorite rock bands either on CD or go to a live show and meeting up with my friends.
    I also read back thru my caringbridge to see how far I have come from that day when I got the news no one ever thinks they will hear or wants to hear. That tends to calm my nerves.
    And Pam, I too am digging the new tv ads...not that many will heed but at least it is out there. When I grew up everyone smoked. You read the old ads and it's amazing....
    And yes, some days we do forget how lucky we are. I met a gal last year who didn't make it. I think of Karen often and when I do the survival lap at our local Relay for Life this June I will do it thinking of those who weren't as lucky as we are.
    NED to all and be brave, be strong!
    Much luv to all
    Peace
    Nancy aka toughcookie
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Pam M said:

    OK - SO I'm Not Crazy
    But, as someone I used to know would say "I ain't right". A sore throat can't just be a sore throat. For a couple weeks now, instead of being grateful I don't need as much food at meals lately, I've questioned why I fill up quickly these days, and am sorry my CT scan didn't go down farther. I'm not totally obsessed, but I think about it more than I'd think I would have. I sometimes get irritated when I forget for a while, then am jolted back cause I'm hacking something up (or trying to), or feeling like I'm choking on saliva, or trying to move my arm in a way that isn't going to work for me.

    I will say, though, that a couple days ago, a client where I work walked up to my counter to ask a question, then a couple minutes later, said - "Wow - it looks like you've had some kind of major operation". I am pleased to report that I didn't flinch or falter - I just told the man what it was. He cringed a little, and I didn't begrudge him a bit when he said "Well, I'm glad you're all right now".

    Hopefully, I won't lose it anytime soon, and squirt smokers' ciggies with a water gun, and force drinkers out of a bar, and make fat people in a restaurant order the vegetable platter. Off topic of my rant here, but I AM digging the new "advice from former smokers" tv ads.

    Sounds like a big "Wah", I know. Truth is, I'm good - checkups are NED - amazing what doesn't really bother you much after the doc says "clean". It's just that from time to time, I wander, and forget how lucky I am.

    Wow, Pam
    What you said ... "when I try to move my arm in a way that isn't going to work for me..." I resemble that remark, and I get really pissed off when the arm gets hung up somehow. Somehow I thought that I was the only one with that particular little side effect.

    It's always reassuring to learn that you're just the same as everyone else.

    Deb
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Roger

    I just knew it was something beside my good looks that was wrong with me. Now I can tell the wife its not me it is my PTSS, thanks for sharing. There are so many different things that we go through my problems are finding doctors who understand them and know how to treat them.

    Hondo
  • ratface
    ratface Member Posts: 1,337 Member
    Hondo said:

    Hi Roger

    I just knew it was something beside my good looks that was wrong with me. Now I can tell the wife its not me it is my PTSS, thanks for sharing. There are so many different things that we go through my problems are finding doctors who understand them and know how to treat them.

    Hondo

    the real value of this board
    which are many, but a big one is knowing someone else is experiencing the same symptoms, treatment,fears and triumphs. Hondo, it's good to see you back.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    ratface said:

    the real value of this board
    which are many, but a big one is knowing someone else is experiencing the same symptoms, treatment,fears and triumphs. Hondo, it's good to see you back.

    Agree
    the value of this board or boards like this are special. the doctors want to help, the nurses want to help along with so many. they just do not have the knowledge, experience with fight with the side effects both mentally and physically. the support here is value only survivors can have along with caregivers.

    hard when some lesson there time on the board but understood also.

    john