PTCSD anyone?

todd121
todd121 Member Posts: 1,448 Member
in Kidney Cancer #1

I've been thinking about this more and more. I diagnosed myself with PTCSD (Post Traumatic Cancer Stress Disorder) today. The symptoms? I have this nagging feeling my cancer has come back and it just won't go away. I think it's gone (and, in fact, I've stopped even thinking about IT), then I get a little pain in my neck that lasts a few days, or in my lower back, or maybe in my hip, and the next thing I know I'm convincing myself that my cancer has returned. Never mind I had scans a month ago and everything was clear! I tell myself little lies that don't make sense to increase my anxiety to panic (Maybe they missed it? Who knows what they can see and not see without contrast? It's *possible* some rare, super fast growing tumor has reared its ugly head. Or maybe I'll momentarily forget altogether that I had scans just a month ago.)

I think I need a brain transplant. Surgeons can't fix this part!

Honestly, I wish I could stop worrying about it completely. I do tell myself to stop it and I usually do stop it. But then it comes back- sometimes seconds later. I know it's counterproductive.

I suppose it's just body memory at work. When my cancer showed up it caught me completely off guard. One day I'm in perfect help, then I'm peeing blood and I'm thinking UTI (but no fever or elevated WBC), then I have flank pain and I'm thinking *another* kidney stone. I even had my oncologist uncle and the ER doc convinced it was a kidney stone. Then the ER doc was smart enough not to listen to me and do a CT scan "just in case".

I used to think I knew what was going on with my body. Now I don't trust it. I feel like it betrayed me.

Really, I should be so grateful. I had 50 years of near perfect health. Still, I wish I could stop getting anxious at every little ache and pain or feeling of "not feeling too well". I'm anticipating. I know that. It was a taste at what it will be like if/when I get terminal illness. Panic. Distress. I never got to the acceptance part. I still haven't gotten to it. Acceptance and letting go is hard. It's like forgiveness. I don't even know that I know what it means. I liked it when I was young and had everything figured out. I miss those days.

Todd

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #2
    I have PTCSD-SV (spousal version)

    I feel your pain, albeit not as a survivor. Yes, as the spouse, you have described me exactly. Actually, I'm being treated in therapy for PTSD symptoms due to the trauma nature of my husband's diagnosis ( blood everywhere, middle of the night, had to drive him to the ER with our 8 year old daughter in the car witnessing everything, watching him suffer through days of hellish pain episodes that didn't stop with drugs, etc)

    Seeing a therapist is my saving grace, but I still don't know what to do about the constant worrying about cancer and illness (mine, his, our daughters, etc). I'm constantly feeling for lumps and bumps, etc. Acceptance is hard and so is letting go. I only wish I had my husband's ability to cope with his illness in a similar fashion. 

  • aamdsi
    aamdsi Member Posts: 284
    #3
    cantagious?

    Wow!  Now I know what I have! 

    Took 50+ years of stellar health before I was diagnosed after a routine eye appointment.  No peeing blood, no back ache, nothing.  Just a spot (like a drop of water) that one morning appeared in my line of vision, only noticed when putting on eye liner.

    Even the NED scans haven't stopped me from worrying myself into a tizzy over everything - even common poison ivy could be a reaction to ...and could cause..

    We/I have been reassured, by Iceman and Foxhound, that we will think of it less and less.  And hopefully we will worry less and less about all the things that are normal when one's body feels as it ages.

    Then there's added the worry about my daughter and granddaughter.  Now they have this in their family history, and that guilt eats at me even though I know there's nothing that I did or can do.  

    I have evern stopped dreaming. I can't seem to get myself to think of the future anymore.  Pathetic I know, but... 

    I am going in for a mammogram mid-month. As I see all the pink showing up everywhere in honor of the survivors - I truly PRAY that I don't have to be one of those too. I am so terrified of going, yet it's a 20/20 situation.

    Sigh. I thought having SOD (Shiny Object Disorder) was bad (I came up with it when my daughter would wander off - distracted by butterflies and shiny things) 

    Anyway... may not sound right, but am glad I am not the only one who just can't, "let it go".

    Thank you.  Your note hit a note and, strangely makes me feel a little less lonely/crazy

  • Djinnie
    Djinnie Member Posts: 945 Member
    #4
    Post Traumatic Stress!

    Hi Todd, 

    I can understand how you are feeling this way, the fear of what if getting the better of you. Being terminal is a very scary place to be as some of us know only too well, and you have had a close glimpse of that as a possibility. No longer feeling your body is a safe place is only natural under the circumstances. In reality we have never known what's going on inside us, we just trusted our bodies to get on with doing what it's designed for, and to do it well. I don't believe our bodies have betrayed us, they are doing their best to re stabilise and overcome this cell malfunction, and so far, for you it's working. As you state getting stressed in this way can only be counter productive. 

    I haven't reached the acceptance part either, I am trusting my body to overcome this. I don't believe it will throw in the towel unless I do so on a mental level. What I am trying to say is what you think has a huge effect on your wellbeing, but you know that already. Have you tried some methods to help you to manage these fears? I know if you dwell their too long they will consume you, so keep fighting them, every time they come up change your thoughts to something that makes you feel happy. That generally works for me, it's not easy but keep at it. On the other hand maybe chat to your doctor, I would hate for you to fall into depression you have been through enough.

     

    Take care:)

     

    Djinnie xx

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
    aamdsi said:

    cantagious?

    Wow!  Now I know what I have! 

    Took 50+ years of stellar health before I was diagnosed after a routine eye appointment.  No peeing blood, no back ache, nothing.  Just a spot (like a drop of water) that one morning appeared in my line of vision, only noticed when putting on eye liner.

    Even the NED scans haven't stopped me from worrying myself into a tizzy over everything - even common poison ivy could be a reaction to ...and could cause..

    We/I have been reassured, by Iceman and Foxhound, that we will think of it less and less.  And hopefully we will worry less and less about all the things that are normal when one's body feels as it ages.

    Then there's added the worry about my daughter and granddaughter.  Now they have this in their family history, and that guilt eats at me even though I know there's nothing that I did or can do.  

    I have evern stopped dreaming. I can't seem to get myself to think of the future anymore.  Pathetic I know, but... 

    I am going in for a mammogram mid-month. As I see all the pink showing up everywhere in honor of the survivors - I truly PRAY that I don't have to be one of those too. I am so terrified of going, yet it's a 20/20 situation.

    Sigh. I thought having SOD (Shiny Object Disorder) was bad (I came up with it when my daughter would wander off - distracted by butterflies and shiny things) 

    Anyway... may not sound right, but am glad I am not the only one who just can't, "let it go".

    Thank you.  Your note hit a note and, strangely makes me feel a little less lonely/crazy

    Like having a song stuck in your head

    "It's beginning to look a lot like Christmas....." Try replacement therapy. Choose a tune you like ,that makes you happy, and repeat it in your head. Make it all you can think of. It is a lot cheaper than a Harley.

  • rainsandpours
    rainsandpours Member Posts: 136
    #6
    Djinnie said:

    Post Traumatic Stress!

    Hi Todd, 

    I can understand how you are feeling this way, the fear of what if getting the better of you. Being terminal is a very scary place to be as some of us know only too well, and you have had a close glimpse of that as a possibility. No longer feeling your body is a safe place is only natural under the circumstances. In reality we have never known what's going on inside us, we just trusted our bodies to get on with doing what it's designed for, and to do it well. I don't believe our bodies have betrayed us, they are doing their best to re stabilise and overcome this cell malfunction, and so far, for you it's working. As you state getting stressed in this way can only be counter productive. 

    I haven't reached the acceptance part either, I am trusting my body to overcome this. I don't believe it will throw in the towel unless I do so on a mental level. What I am trying to say is what you think has a huge effect on your wellbeing, but you know that already. Have you tried some methods to help you to manage these fears? I know if you dwell their too long they will consume you, so keep fighting them, every time they come up change your thoughts to something that makes you feel happy. That generally works for me, it's not easy but keep at it. On the other hand maybe chat to your doctor, I would hate for you to fall into depression you have been through enough.

     

    Take care:)

     

    Djinnie xx

     

    PTSD kinda creeps up on you. 

    PTSD kinda creeps up on you.  I definitely have it.  My kidney surgery/hospital experience still gives me shivers.  Don't know if you know this, but when they discharged m, it was WITHOUT pain meds.  Surgeon forgot the write it, the hospitalist refused to.  So I was sent home with nothing.  Wound up in the ER the next morning with pain a 12/10.

     

    Then there's the nurses I suffered through.  I really, really hope my RCC never recurs because I'm not doing that surgery again.  ever.

     

    They call it "cancer head" for a reason.  i'm not sure anyone ever really stops worrying.  Learning how to channel that worry is the best way to cope with it. 

  • Srashedb
    Srashedb Member Posts: 482 Member
    #7
    PTSD

    Todd:

    as my husband's caretaker (not that he needs that these days except as a nag with drinking water), you have described my last year.

    I obsess constantly and go into fear, i recalled what last year (down to date, time and procedures) regularly and every ache and pain sends me back to the darkness. I read two books about widows, stress every time he gets scans and make a total pest of myself with his onc's office to get the results. 

    Feel determined not to be sandbagged again and yet, the truth is that they are but feeble attempts to control the uncontrollable.

    he is now scheduled for scans on 12/15 and I just planned another vacation in Hawaii for January and it took a lot for me to pull the trigger but I did.

    I don't usually bring up religious/ spiritual beliefs but it has never failed when I remember to ask for acceptance of God's plan and the strength to carry it out and then ask to have the fears lifted and to replace it with trust. It's not until the fear hits again that I realize that I have been free of it.

    Sarah

  • Phredswife
    Phredswife Member Posts: 162
    #8
    PTCSD- Home edition.

     Sounds like a reality tv programme only not so inspiring! Can really relate to this topic. I have PTCSD spouse edition. Sadly it seems to be infecting our whole household. Take care everyone xox

  • APny
    APny Member Posts: 1,995 Member
    #9
    Phredswife said:

    PTCSD- Home edition.

     Sounds like a reality tv programme only not so inspiring! Can really relate to this topic. I have PTCSD spouse edition. Sadly it seems to be infecting our whole household. Take care everyone xox

    Yes, absolutely. It can do

    Yes, absolutely. It can do your head in, really. I was in a rear-end accident (the one who was hit) recently and afterwards had severe rib/side pain for almost a week. Did I connect it with the accident? In my rational mind, of course. But the irrational part kept nagging in the background that it was mets. Thank god my six month follow up x-ray showed nothing and it's now gone but it's a perfect illustration of how this thing changes you. Every headache, ache, or pain becomes a worry. I'll have to try the Christmas jingle approach.

  • TillieSOK
    TillieSOK Member Posts: 252
    #10
    Hello. My name is Tillie and I have PTCSD...

    yup!  I have a rip roaring case of PTCSD.  I wish it would go away, along with the painful cough I have, that I just KNOW is the lung nodule continuing to grow. I feel like my body and my mind are betraying me and I don't know what to do to whip them back into line!

     

  • Bellweather
    Bellweather Member Posts: 102
    #11
    Non traditional meds

    I have this syndrome and went a long time consulting with my doctor for relief.   She prescribed numerous pills, anti anxiety,  valuim,  etc.  I hate the feeling all the meds gave in the end, finally I read Psalm 23 and it really soothed me and left me in a very calm and secure state of mind.  The syndrome still comes around and I stop and recite the Psalm, it really works for me.  No pill ever came close to counteracting my anxiety like this method.   Give it a try, it may work for you as well.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #12
    This made me smile

    This made me smile...because I am kind of feeling the same way. Worried, vulnerable. Every ache and pain is amplified. And yet, I want to embrace life even more and don't want to let the cancer take that away from me! Focus on the good, focus on the good, focus on the good. At least here, we can air our worries, our concerns. Humming those Christmas songs and thinking of those good thoughts is the ticket.

     

    Hugs

    Jojo

  • todd121
    todd121 Member Posts: 1,448 Member
    #13
    foxhd said:

    Like having a song stuck in your head

    "It's beginning to look a lot like Christmas....." Try replacement therapy. Choose a tune you like ,that makes you happy, and repeat it in your head. Make it all you can think of. It is a lot cheaper than a Harley.

    Song stuck in your head

    It's exactly like that! I sing in a church choir, and last week I had this song that I didn't like stuck in my head. The worst part is I'm really bad at remembering the entire song's words and melody, so my head doesn't sing it all the way through. Just some random part of it over and over again. (For some weird reason, when I perform it or sing with the group, I remember the whole thing, but when the soundtrak is going, it's just a snippet).

    Taking action seems to be the only way. I'll have to put some songs I do like on my phone and carry my headphones with me, so I can play something else when that's happening.

    Appreciate all the comments and advice.

    Todd

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