Sorry folks, but I just need a place to vent.....

As most of you know I'm a pretty stoic guy.  I have very few "why me" or "when will this ever end" days but, the last two weeks have been just awful.  I have what the Doc's are calling "Radiation Flashback".  It's a well demonstrated but thinly researched condition that is caused (they think) by some forms of Chemo.  In my case it has presented every single ugly thing I went through during Rads.  Thrush, heavy white mucous, terrible time swallowing, really bad mouth sores, neck spasms on both sides, hemorrhoids and I could go on but I think you get the picture.  To top it all off, yesterday I had the tooth next to my front tooth just break off, snap.

I guess the reason all this is getting to me is I thought I was getting so much better, tumors shrinking, putting on weight, had some stamina, actually started to plan something past the next scan.

Oh well, enough complaining, nothing I can do about any of it anyway.

Good luck everyone,

Joe

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    This is THE place to vent....

    and venting is good for us....I don't do very well when I keep things all bottled up.  I'm so sorry you're going through all this....like a bad dream you can't wake up to.  Is it logical to think that since this is "radiation recall or flashback", that it will go away just like the original radiation symptoms did?  That treating it like the original....thrush meds, keenex...soda/salt, etc etc...and a heavy dose of patience will again put all this crap in the background? 

    The busting of the tooth was like a final straw, huh?  I felt the punch to the gut just reading your post....

    Just know we love you, too....vent here anytime....you know we're listening.  Hugs, Joe....one day at a time.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    feel free to be less stoic

    Joe,

    Why can’t it be a flash back to something nice? You deserve it.

    With you all the way.

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    Radiation recall

    really sucks...my husband had it too...and severely. I'm so sorry you are experiencing it! It's like a horror film version of Groundhog's Day. It will resolve...just like it did when you were going through radiation. Pull out your tool box of things that helped the first time through and use them again.

    as far as venting goes...yep, you found the right spot. Phrannie is right..this is THE PLACE. So many people here understand in ways that others cannot. So go ahead and vent. It helps to know that someone is virtually listening and understanding, without comment or judgement, just accepting where you are and what you feel.

    I hope and pray it gets better for you soon, Joe.

    Barbara

  • wmc
    wmc Member Posts: 1,804
    You have every right and never apologize Joe

    You know this is the best place to vent, and what you are going through with flashbacks must just be so hard. It can be so hard when the mind wants to recreat things. I lost my teeth very young due to illness so I have dentures. At first when I eat a piece of candy I got a toothache, I know it was not real I had no teeth, so taking an aspren to help did no good as it was not real, just in my mind. Sure did hurt and I could not eat candy for many months. With the chemo triggering all the side effects of radiation must really be rough. I pray they will pass soon, or at least get better parts of it. I think having chemo flashbacks is about the worst sideeffect I have evre heard of. God i'm sorry.........

    Bill

  • jb1952
    jb1952 Member Posts: 13
    hey joe Iam with you

    Hey Joe I'[m right with you.I don't know how to help you. But, I just wrote a long note to you ,about about how I am Trying to cope. I have the best wife you could ask for.BUT you know this takes longer than a day. The note I wrote to you I deleated. Sometimes you can vent here,and nobody will judge you. and they know where you are,I am just like you, ups and downs and no clue.Good luck

  • MrsBD
    MrsBD Member Posts: 615 Member
    Venting

    I thought this cartoon fit the situation. So, go live! I will pray your side effects lessen quickly.

    Cartoon

  • lifeisDHA
    lifeisDHA Member Posts: 64
    My boyfriend had these

    so called radiation flashback symptoms a few months out of last rad/chemo treatemnt, he felt terriable during that week but the symptoms went away in a week or two.

  • kdot2003
    kdot2003 Member Posts: 143
    OMG are you serious?  There

    OMG are you serious?  There is such a thing?  I have not heard of this, must look it up.  I heard of the PTSD...

    Karen

    Plus being a Labor and Delivery Nurse for twenty years has not helped me much with CANCER.  I know next to nothing!

  • Barbaraek
    Barbaraek Member Posts: 626
    kdot2003 said:

    OMG are you serious?  There

    OMG are you serious?  There is such a thing?  I have not heard of this, must look it up.  I heard of the PTSD...

    Karen

    Plus being a Labor and Delivery Nurse for twenty years has not helped me much with CANCER.  I know next to nothing!

    Radiation recall

    Karen, my husband's radiation recall was brought on as a result of the adjuvant chemotherapy That occurred after radiation was over.

    barbara

  • avisemi
    avisemi Member Posts: 172
    are you feeling any better

    are you feeling any better today? I really hope so!!!! I am sending you all the positive energy I can and praying for things to get better soon

  • jcortney
    jcortney Member Posts: 503
    avisemi said:

    are you feeling any better

    are you feeling any better today? I really hope so!!!! I am sending you all the positive energy I can and praying for things to get better soon

    Some things better, some worse, some new

    Mucous (with Musinex) is better under control, throat has closed up some makinng eating and swallowing pills difficult, mouth sores are better; but not gone, got acid reflux from something (never had it before in my life) and just a general feeling of milaise.  Back on steriods which I hate but is probably helping with the sores.

    Have a big scan on Monday and results on Wednesday.  We'll see what we see then.

    Thanks for all the well wishes and comments.

     

    Joe

     

  • caffinated1
    caffinated1 Member Posts: 32
    jcortney said:

    Some things better, some worse, some new

    Mucous (with Musinex) is better under control, throat has closed up some makinng eating and swallowing pills difficult, mouth sores are better; but not gone, got acid reflux from something (never had it before in my life) and just a general feeling of milaise.  Back on steriods which I hate but is probably helping with the sores.

    Have a big scan on Monday and results on Wednesday.  We'll see what we see then.

    Thanks for all the well wishes and comments.

     

    Joe

     

    Thrush

    Ewwww!!! God i hated that crap!! I know where you are man, thats one hell of an ugly road but you can make it. Nothing tastier than an antifungal swish...MMMMMMMM chase it with some magic mouthwash and a couple cans of Isosource HN to the peg tube and its a party!!

  • phrannie51
    phrannie51 Member Posts: 4,716
    jcortney said:

    Some things better, some worse, some new

    Mucous (with Musinex) is better under control, throat has closed up some makinng eating and swallowing pills difficult, mouth sores are better; but not gone, got acid reflux from something (never had it before in my life) and just a general feeling of milaise.  Back on steriods which I hate but is probably helping with the sores.

    Have a big scan on Monday and results on Wednesday.  We'll see what we see then.

    Thanks for all the well wishes and comments.

     

    Joe

     

    Sending HUGE prayers...

    a million positive thoughts, crossing all digits (and will include eyes).....and mucho mojo on the upcoming scan. 

    I'd tell you not to be nervous, but that would make me a hypocrite.....but it doesn't hurt to trust that a power greater than ourselves has got this....

    p

  • hwt
    hwt Member Posts: 2,328 Member

    Sending HUGE prayers...

    a million positive thoughts, crossing all digits (and will include eyes).....and mucho mojo on the upcoming scan. 

    I'd tell you not to be nervous, but that would make me a hypocrite.....but it doesn't hurt to trust that a power greater than ourselves has got this....

    p

    Joe

    Living the nightmere once is enough. My heart aches for what you are having to endure. Know that these symptoms all passed the first time and will again. Hopefully, very quickly.

     

    God bless you,

    Candi

  • jcortney
    jcortney Member Posts: 503

    Sending HUGE prayers...

    a million positive thoughts, crossing all digits (and will include eyes).....and mucho mojo on the upcoming scan. 

    I'd tell you not to be nervous, but that would make me a hypocrite.....but it doesn't hurt to trust that a power greater than ourselves has got this....

    p

    Just hope I'm getting my on blade on Matt's fan :)

    Time for one I think.

  • phrannie51
    phrannie51 Member Posts: 4,716
    jcortney said:

    Just hope I'm getting my on blade on Matt's fan :)

    Time for one I think.

    There's always room

    on the ceiling fan!!  Here.....I just dusted off a blade for you!!  I'm sitting up here myself....this is the longest I've ever taken up residence here. 

    I'm praying for you, Joe.....have you tucked in my pocket right next to Laralyn.....you two can play cards Smile.  Truly, I'm praying like crazy....You know....radiation recall isn't a sign of anything but exactly what it's named for....it's not even in the book of bad omens....neither is a broken tooth (I know, I've had many of them)...

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    jcortney said:

    Just hope I'm getting my on blade on Matt's fan :)

    Time for one I think.

    special order

    image

     

    Anything to help

     

    Matt

    v

  • phrannie51
    phrannie51 Member Posts: 4,716
    CivilMatt said:

    special order

    image

     

    Anything to help

     

    Matt

    v

    Matt....

    That is SO perfect!! 

    p

  • donfoo
    donfoo Member Posts: 1,771 Member
    Family

    Hey Joe,

    We're family here so go ahead and let it all out - this is the one place where we really do understand.

    I've been drifting away from my daily dose of CSN and so very sad to learn today about P. And hearing about your struggles just makes me more sad but also more appreciative of every day of living we all have to make the most of.

    Your condition is new to me or I just have missed other mention of this condition. Let's hope it passes passes through like a quick rain shower rather than a storm.

    Keep posting whatever.

     

    Don

  • Goyca
    Goyca Member Posts: 220
    It must be hard and annoying

    It must be hard and annoying to have those flashbacks!! Do something fun get ur mind of it till it ends

    sending u Porsche and Ferarri cars :)