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post-tramatic stress post chemo

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

ya know, I did not have any problems getting through 3 surgeries, the chemo months from h*ll, 3 hospitalizations- I made work WORK for me, I had family support- I did what I needed to do. The only time I cried was one horrible sick chemo day- and in all honesty I was praying for death as in, it was pretty bad. I lived through it all- I trusted my colorectal surgeon- never missed an appointment, did everything I needed to do without even questioning and no whining whatsoever. About the only thing? I could not research colon cancer- I couldn't read about it, I didn't want to talk about it, didn't want to go there on any level. I joined this board AFTER it was all over.

And now? 21+ months NED, 14 months post chemo- physically I am fine.

Emotionally and mentally I am a mess. Things will come up that bring forth this depth of painful emotion for me- all of a sudden I will feel as though I am back in a hospital bed and the emotion will be panic, dread- I almost start to hyperventilate- sometimes I will be holding my grandson, who was born right before I was dx'd and I start to cry thinking that maybe I wouldn't have been alive to see and feel this child in my arms. It is as though I successfully buried all the emotional pieces when I was going through the physical trauma of cancer and chemo and now they are surfacing. AUGH

Almost as though it is post traumatic stress disorder. I am on an anti-depressant and start to work with a psychiatrist who works with cancer patients in mid-April. So I am making some attempts to correct and deal with this. Any body else relate to this? Any suggestions on what you have done that has helped?

Thanks.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Like the panic attacks I get when I think of my hospitalizations and all. I do think back to what I've been through at times, and my heart starts racing, and even thinking about that darn NG tube, because that thing scares me and I hated even having it in me so much that I yanked it out a few times, and had this mean nurse get ticked at me so bad because I wouldn't keep it in lol...but yes, I have that history of panic attacks where I can even think of my kids and their life without a mom (my mom died when I was 16) and don't want them going through what I did, that can set me off as well...I'm with you girl, and don't worry, you aren't alone. I guess that's what my ativan is for as well, it's an anti-anxiety med that does help with the edge though, maybe you need something for the anxiety as well, since it may not be a depression thing, but more panic/anxiety thing.

Hugsss!
~Donna

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I know when I went in for my hand and elbow surgery in Nov. Just an outpatient procedure- they wanted to just give me a local and I had a fit, crying and everything- told my cancer horror story (the condensed version) and not only did they give me a general, while I waited on the surgeon to get done with his other procedure they gave me something very nice in the IV. Donna- I never once even cried at Mayo, never questioned anything, no anxiety, nothing. So I dealt with the cancer just fine, and then I go to have a simple enough procedure on my hand and elbow and I HAD A BLOODY FIT...the sights, sounds and smells of a hospital throw me into anxiety- just taking my kid to the ER and I can't even go in the door.

coloCan
Posts: 1956
Joined: Oct 2009

but as I get further from when I had colostomy and as my postop chemo is nearing its end, I expect to be found by whatever scan I do to be NED myself. I'd spent much, much time in bed watching TV, more in the past seven or so months than in the rest of my life put together. One day it dawned on me that I didn't think I was gonna die tomorrow from cancer and if that was to be the case, what kind of life was I living? So I turned off the TV, got off my *** (whats left of it),got dressed for the cold weather then, grabbed my cane and took my longest walk to date since op and I haven't stopped since!!!I just decided I gotta start living again and that was it.Just get off your *** and DO IT!!!!!
I go out at least twice a day, more now as it warms up,and I always wear long shirts so no one knows I have a bag; I watch out for my stoma but I now try to go wherever I want (tho still avoiding crowds,if possible, as immune system I know is still compromised and I don't need to catch nothing.)I plan on starting to drive again tomorrow as I should be capable of sitting and concentrating on driving at same time tho for how long remains to be seen.
I'm now using light (tho gradually increasing) dumbbells to get strength back tho only right arm as picc(second one)is still in left arm and afraid to have second one move on me too.
To conclude:my motivator was that it was time to start living again and now is as good a time as any. I know I may not have gone thru as much suffering as some of you have but I definintely have been there mentally and emotionally in my own battle.
You just have to decide you want to get back to living and do it, one little step at a time , even if two steps forward and one step back as long as you make progress.....steve

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Patteee

I can relate to what you are saying. My chemo reaction was much less traumatic than yours but the emotional aftermath post-treatment was still quite significant. The trauma of having a life-threatening experience of cancer and cancer treatment definitely fits the traumatic criteria of PTSD.

Here is a helpful website from BC on Post Traumatic Stress.
PTSD
I am gled that you are following up with a doctor.

Be well... Rob; in Vancouver

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

thanks Rob, very helpful link

maglets's picture
maglets
Posts: 2592
Joined: Jun 2006

Pattee I am so glad you posted this topic...it is something I have been thinking about for a long time. when i finished chemo last year, and then have to drive on a 4 lane highway....freakout....too must stress, just driving past our hospital is stressful. So many things, sights, smells, sounds can push me right back into the trauma of surgery and treatment. Like you I just soldiered on when it was actually happening but now I wonder where all that fear and trauma is stored in our brains

good luck to you....you are not alone

mags

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

thanks mags

andicat's picture
andicat
Posts: 10
Joined: Dec 2009

And I thought I was the only one. I don't have panic attacks, but I'm wondering if they will start. I never wanted to research my cancer either. I didn't want to know. I knew about this site, but I didn't want to read about other's experiences. I joined when the worse was over. I think I felt if I didn't dwell on cancer, I could pretend I didn't have it. I always felt I would beat it. Now that chemo is over, I think too much about it coming back. I wonder if I have not come to terms with cancer. Like I'm hiding the fact that I went thru it all. I'm not quick to talk about it or tell people I had cancer. I don't want people to feel sorry for me. I think I need to talk more about this whole cancer experience. I don't contribute much to this board, but I read a lot of the postings and you all have helped me get thru this. Thanks
Christine

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

sometimes it feels like it was a dream
do you do the "this time last year" or, "this day 6 months ago"
I know it is still so much with me as I have this time line in my head
I even do this, "the last time I drove this highway I was headed to the hospital" or, "I haven't had a tuna melt since before cancer", the strangest one for me the 20th of every month (when I was dx'd) and the 6th (emergency surgery) are like important days- not really gloomy ones, but some obcession there with those numbers. Tuesdays used to suck big time, the day I was dx'd, but that has gotten better. I have clothes, some that were very new, that I had to give away- anything I wore when I had cancer- even that would bring forth this knot in my stomach.
I keep hoping with time this will get better? Gaud, I hope so!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, Patteee

I 2nd that - had no idea you joined after the fact - that is the same path I took, only it took me 5 years to find the road.

I believe that is how a "high stress event" can happen in one's life. In the middle of a firefight, our minds and bodies are wired for "fight or flight." All of our eneregies are put into the immediate situation. Emotions are squeezed out and put aside for that moment. It is survival time.

As the stress passes, the "shock" the "reality" set in. At that point, we are overcome to different degrees with what we've encountered or experienced. Each one of us handles these stresses differently with different methods and different tools. Some of can "bend" and some of us can "break." It's a very fine line.

I have not gotten to the point where I can't function - I have to stay moving and keeping my career going, or it's up in smoke for me, Kim, and Harley. I supposed I'm what you call a "Have-To" man. Cancer took so much and I drew a line in the sand about my family, my house, and my career - IT took what IT took from me - from us, but it has not taken those and I refuse to let it.

I don't take any medication but Zyrtec D for congestion. I took myself off all medications. When I feel sad or down, I take those days as they come, go to bed to rest my mind, and then get up the next morning and go again. I try not to stay that way for more than a day or 2.

Watching my recent TV news story brought back some of what you were saying. I saw myself in the clip in the hospital bed, in pain in that shot. I saw myself in my CyberKnife vest pondering life as I waited for my treatment. I saw Sundance "alive" and laying next to me in bed, comforting his papa.

I see those images and they evoke the emotion, they strike that common chord of humanity that resides in all of us. I can get teary, as this is evidence of what I went through and what I hope to not go through - and more importantly, what I hope no one else has to go through. So, I understand the emotional side of this equation - and I understand what you are saying perfectly.

I think meds and counseling are a good idea, Patteee. I hope they help you find a balance that you can live with. Remember, that you are NED, it looks really good for you, so don't let old memories "paralyze" you. Remember, that is what you went through and made it through....and is only a part of you NOW - a part of your PAST - not your FUTURE. You are going to be ok. It's perfectly OK to address your feelings now - it's a good time. But you're going to be OK, shoot, you are already OK in my book.

We can only do so much in a day's time - live as many as you can - appreciate those rare days when things "dial in" and go your way on a particular day...there's some magic still left in this ol' world.

Come on down to Texas - we'll put a big ol' smile on your face :)

Big Tex
-Craig

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

thank you craig, you are so right

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I now freak whenever I have to be cath'd for some reason; I'm thinking the whole invasion thing. But one glance at my abdomen tells volumes, so there's nothing but sympathy. It can't be helped, and I'm sure will get better with time. We've been through a lot and sometimes it just gets the best of us! When I had to have my first kidney stent placed, it was the first time I'd been back to the hospital where my original treatment began and I was fine until I was put into the prep room; then I was a blubbering mess! They quickly got the IV going and got me some happy meds, so it was ok! All you have to do is mention you have colon cancer and everyone sympathizes! I agree with the comment about getting on with the art of living; it definitely helps you move on from the bad stuff, and the more active we get, the stronger we get and the more "normal" we feel. I find this helps me quite a bit and I'm sure it will help you as well. And of course, a little bit of medication every now and again can help as well.
mary

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

I am of the old school where men don’t cry. Only woman are allowed that release. There were a few times I wanted to. I think what freaks us all out is the honest fear of reoccurrence. If we dwell on that subject it will mess with our heads. I choose to live for the day - one day at a time and enjoy the hell out of it.

For me, if I burn up my energy worrying about this crap, I will not have that energy to keep killing any and all of the damned little ******* cancer cells that might or might not be in this old body. I think John23 had it right when he said we have to get over the fear of death to win the battle. For me this battle is of both mind and body.

You know how I told you all about my problem of crapping in my pants. Well we had an old dog that was making messes in the house. Well one morning Susie awoke to find the dog had crapped in our bed. That day she took the dog to the vet and had her put down. I now live in fear of crapping in bed as I know what comes next!!!

I have a nurse from my insurance company that calls me every month. We talked about my crapping in the pants problem. She said they even have a name for it. As it is a combination of two very normal body functions, they call them sharts.

Try to find the humor in all of this hell we all have been through. It is there if you look for it. You will find it is more fun to smile.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

"I just sharted"
"I don't know what that is"
"I tried to fart and a little sh** came out"
I love that movie! Great movie to laugh at bowel issues, although my sister who has suffered very badly from ulcerative colitis didn't find it nearly as funny as I!

And the whole knowing what comes next if you mess the bed! ROFL! Thanks for the laughs.
mary

maglets's picture
maglets
Posts: 2592
Joined: Jun 2006

last time i went for a mammo I burst into tears....I mean big gushing sobs....this is the old lady who has trooped through 2 8 hour liver re-sections...this wasn't even the actual mammo...this was the nurse going to examine me! no way sister! so I did the big squeeze and that was it. It wasn't the fear of pain ,,,maybe it was an invasion issue...

mags

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

After losing my mom and her mom to colon cancer, I had never met anyone that had survived this, I thought well I am f&cked.

I have got better with the death thoughts, but after my chemo ended I felt a lot of panic. I thought that the only thing keeping the cancer gone was the chemo so once i stopped that it would come back. I could only live in the moment and could not think about any future at all. It has been 9 months since my last chemo and those feelings are starting to recede. But death is still very much in the back of my mind. I did see a therapist that deals with cancer patients, but only once. I might go back to her one day if I need it. I hope you start to find peace, you seem to be taking a very proactive approach to it, so in time I know you will feel better. Take Care!

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Pateee,

I am no expert, + am certainly not NED (yet!) but I think what you are going through is perfectly normal. I also think you will get through it, + it sounds like you are doing all the right things to get through it. Often, when we have a crisis it is in the afternmath that it truly hits us. I am so happy for you to have a little grandson who will cheer you up + make you laugh + you can hold him in your arms. Keep reminding yourself what you have been through + how well you have done. I know these perfectly normal feelings will pass. When I am NED I will look to you + others to coach me through it. Take good care!

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

I do wish that I had found this site at the beginning of my journey! I am almost one year out from the last chemo treatment and thought that I had handled the whole DX/surgery/chemo/surgery thing well. I kept exercising, even did a pilot program with our Hsp here for chemo patients and I believe that really helped. I also used humor, surrounded myself with friends and family, journaled my thoughts and believe in and use the power of prayer. I only occasionally felt sad or angry and never cried about it. But, just recently I started back to school and had to do a cultural essay. I used my cancer journey to support my thoughts in part of the essay and went in to the writing center for help on the closing. Well, we started to discuss how my cancer journey supported the thoughts and how I needed to make it a more important part of the essay and I just broke down and cried right then and there. The tech didn't know what to do to help me so she just let me cry until I could get myself together and leave. I cried the better part of 2 days! Now my tears surface quickly but not the gusher it was! I have had one PET scan and a couple of CT's both did not bother me. So yes, I do believe that we have PTSD and I am proud of you on how you are dealing with it! It could be a plethora of things that bring it on! Hugs Shanna
ps not sure of some of the lingo on this site - what is NED?

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Shanna
NED -No Evidence of Disease
I got a lot out reading these posts. Thanks to all.
Roger

Jaylo969
Posts: 827
Joined: Jan 2010

I am also glad that you guys have posted your experiences.

I am just 5 months out of diagnosis and surgery.I was put into the hospital immediately from the doctors office and didn't have time to research or think about anything. I told someone just the other day that I didn't think it had really hit me yet.I feel like I have been in limbo or something.I am just now getting to a point where I want to try to go back to work and get back to a more 'normal' life. I have been thinking that when all of the chemo and doctors appointments stop and/or slow down then that is when it is going to slam me.I hope not, but if it does I will remember that it does happen and is not uncommon and I can get help if I need it.

Thanks!

-Pat

thready's picture
thready
Posts: 475
Joined: Sep 2009

Wow, the emotional thing towards the end of chemo is kind of tough. Someone asked if I was headed to PTS, I just said no and changed the subject. I am scared to go back to my "old life" to the job that was so stressful, to the people who were so demeaning. I want to be finished, only 4 weeks left, but I am afraid. I am not a fearful person. I have always been there through the tough times, I have always been the one to make things better. I am the irritating glass half full person. But now I am afraid to move forward.

The whole emotional things feels like a depression I had a few months after we lost my mom, my husbands brother and several other close friends. During that time I was put on Ativan to help, and it did. The doctor then said it was PTS, that we can only hold up for so long and then we have to deal with what is inside.

I know we can all make it through this, we are conquerors.
Just simple thoughts from a simple person
Jan

dmdwins
Posts: 453
Joined: Aug 2008

Pattee,

I too did not come here until I was all done with treatments. It was definetly harder for me emotionally when treatments were over. When you're "in the fight" I felt like I was actively fighting to beat this cancer....then I felt like I was just waiting for the other shoe to drop. It now has been almost 2 1/2 years for me and I still have my days but SLOWLY over time I do have to say it is getting easier. I don't think about cancer every single minute anymore....I may even go a whole day without thinking of it...but I don't seem to panic as much on a regular basis. Scans are coming up in May so it has been on my mind alot lately.Unfortunately, we have been changed forever.

I guess really what I am trying to say is that what you are feeling is so normal. It is great that you are talking to someone. I think you too will find as days, months, years go by that the load may ease up a bit.

Smiles,
Dawn

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

I appreciate the information! This has been a great posting. In the short time since I have joined, read posts and even replied to some, I have felt like I have learned so much.
Ditto on those that share. I sometimes feel like a loner here, knowing only 2 other people who have had similar experiences with colo/rectal but not quite the same. It helps me to read others experiences etc.
Shanna

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

wow, I read your post and thought I wrote it or pretty close anyway. I am 12 months out of my last surgery and like you to this point it seems I am cancer free. Yet I am not where I thought I would be mentally at all. I am impatient, irratable, angry, depressed....There are days when it is a chore to get anything done and being around alot of people can set off panic attacks, the last one I really dont understand as I always enjoyed that sort of thing before, and I cant see why what I have gone through would effect that part of my life?. I wish I had advice, unfortunately I appear to be struggling with similar issues. I joined this site, as a matter of fact, just today to see if I could find information or at least others with similar feelings. Good luck to you, I hope you find peace. You arent the only one out there if that helps. and crow 71 thinks for telling me what NED was I am learning to I guess

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

How wonderful you found us and thank you for posting so soon after joining! I hope you find the information and comraderie you need to get through this fight! I think you will find from looking around that a lot of us have similar journeys. Come back often!
mary

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome, greybeard64. I am happy for you that you are NED. I hope you find this site useful, as I have, + can offer guidance, etc. to those of us who are not NED. Take good care!

maglets's picture
maglets
Posts: 2592
Joined: Jun 2006

welcome to the board....so happy that you are NED

something you said struck a chore with....don't want to around a lot of people...I feel that way too....really I feel safest at home....funny isn't it?

welcome

mags

AnneCan
Posts: 3692
Joined: Oct 2009

Me too! I have always enjoyed home, but now even more so.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Welcome greybeard! It's real nice to meet you! hope you stick around!

And, yeah Mags and Anne, I also stay home more, I tend to be afraid of being around large groups of people, some who may be sick, and I want to stay away from other peoples sicknesses lol...I don't mind staying home, I do enjoy BBQ's though, walking, where its quiet, just family, and not a bunch of people around, I think I feel abit awkward now in public since my colostomy and I'm not as fast as I used to be.. I still feel like I'm in this "chemo fog" at times, and "Just there" you know what I mean?

Hugsss!
~Donna

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

Thanks for the welcome aboard so to speak, msccolon that little girl in your picture is as my wife would say "cute as a bugs ear"! she reminds me of my granduaghter about a year ago. I dont know how much good I will do for others hopefully some as just reading others post has helped me already. I do have to walk away from this at times though I can't allow myself to dwell on the subject or I find myself in a tail spin. So I will try to contribute when I can again thanks for the welcome.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

She is the cutest baby around, IMHO :) It's an old picture, she's 17 months now, but I just love this pic, so it stays! I love your post about the history behind your name! Sounds like you and your wife are doing a good job of living this life!
mary

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