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Post treatment confusion

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

Diagnosed June 27, 2012 with T2N2CM0 Stage IV SCC (HPV+) primary right tonsil with left and right lymph node involvement. 

I'm currently 4 months post treatment and returned to work 3 Janurary. The first thing I noticed was the amount of confusion I experienced when I had to multitask. It was and still is evident during large group discussion and especially when I have to quickly formulate responses. The thing is I knew what I wanted to say, but was confused as to how to present it in a logical sequence. 

Now I'm forgetting some of the conversations that I have with my coworkers. I have quickly learned to take a lot notes along with paraphrasing. 

Has anyone else experienced this or am I going crazy.

Will

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

If you had chemo, that is.  I remain convinced that radiation causes similar effects.  I am 2 1/2 years out, and I've definitely noticed some improvement.  In some areas, though, I may never be the same.  I still have trouble with long sequences of numbers, and I have completely given up trying to Line Dance.  Can't keep the sequence of steps clear in my mind.

I expect others will chime in here.

Deb

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

Deb, I had both Rads and Chemo concurrently for 6 weeks. The sequence piece hit the other day while working out. I had to move a rope with each hand in a figure 8 and could not get it right. I could picture it in my mind, but the output was complete confusion. 

Will

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Will, chemo brain (fog) is a possibility, you can look it up...

I'm not sure of the time frame and all, it is temporary as best I know. I haven't really heard anything associated with rads concerning.
I'd for sure get with your MD's and communicate and discuss.

Your body does take a huge it, so I'm sure delayed side effects are possibilities..., well actually I know they are. I'm not sure if what you describe falls into that category...

Again, get with your MD's

Best
~ John

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

It is definitely at the top of my list on my next visit. My work doc (military) thinks it could also be associated and or compounded by a previous TBI. However, I did not have any residual signs from my TBI prior to Dx and treatment. Who knows.

Will

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Hard to say..., who knows how the body works/relates under the additional stress, treatment, recovery and healing all associated with the cancer treatment, and especially with a previous TBI.

 

Thoughts and Prayers it's just a temporary delayed reaction from treatment.

 

HoooRah Brother...

John

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

I've noticed in conversations that I'll know what I want to say but I just can't seem to find the word and have to substitute a synonym.  It's a pain in the a$$ and I don't remember (no pun intended) it happening before chemo.

 

Joe Cortney

Dallas, TX

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

Joe same experience here. I was completely on top of my game. I have over 60 months deployed to Iraq and Afghanistan with way too many firefights and I was never confused or experienced anything like this. 

Will

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

it's called "chemo brain"....and I suffered horribly when I first went back to work.  Like you, sticky notes became a part of my anatomy (attachced to the palm of my hand).  It is better now....I'm 7 months out of rads, and 5 months out of my last chemo...so your thinking will clear eventually.

p

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

That is good news. I have read about "chemo brain" on the dreaded Internet searches, but I place more confidence and trust in the members of csn. Thank you. 

Will

Laralyn's picture
Laralyn
Posts: 437
Joined: Apr 2012

I experienced some of the effects you mentioned and some different ones. When I first went back to work after treatments (which sound the same as yours which makes sense since my diagnosis was SCC Stage IV HPV+ left tonsil), i had a really hard time reconnecting. It felt like my day was a long series of pauses while I thought, "Uh... what was I doing again?" Now, a little over 6 months out, it's better.

On the other hand, you hear about "muscle memory" where your fingers remember how to type because you have done it for so long. I think the brain has an equivalent. Treatments disrupt our daily life and make us think about pretty much nothing else. You come back to work a changed person. I think it just takes time to get back into the groove, to the point that your mind starts to remember the things you used to do automatically.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Can relate, Will- I always figured mine was chemo brain. Still with me, to a degree, almost 4 years out. Tend to get angry a lot as my display of frustration with it. At 58, some might call it old age, but was nothing like this before treatment. Best just to understand it for what it is, maybe pass the word to those who witness it, and move forward as best you can. 

kcass

fisrpotpe's picture
fisrpotpe
Posts: 1331
Joined: Aug 2010

for me i call it a combination of radiation and chemo = radmo

keep in mind when we hear the words "you have cancer" changes our life for ever and i believe it changes our priorities for life. with that i believe we tend not to be able to do all the above mentioned struggles be cause they are not of the highest priority. 

notes is the way i went and continue to go, take them and keep them handy. another for me to help with memory is in my i phone. i take pictures of things i might need to remember when i go somewhere, like the list of questions for doc. most all of us remember to carry phone but we tend to forget the list/note. 

when i need a part for something and need the model number to order part i take a picture of model and serial number.... hard to go wrong with writing the wrong number. 

it will get better over time. not so sure the fog will clear totally.... i know it has not for me. may the sun burn your fog away. 

i need to write a song.... me and my radmo

take care, get used to your new normal... but it will get better

john 

Nous Defions's picture
Nous Defions
Posts: 29
Joined: Jun 2012

Excellent points John.  I do forget my notes sometimes, but I always have my cell phone with me, which ironically has the abilty to display notes plus a camera.  

Im trying to adjust to the new normal...maybe one day. 

Will

AirForce Vet's picture
AirForce Vet
Posts: 25
Joined: Feb 2012

I know exactly what you are going through.  Just like you I was on my game prior to being dx with BOT cancer stage 3 , HPV positive.  Had chemo and rads.  Brain box has not worked right since.  Even tho I recently retired from Active Duty.  I'm still an Aircraft Maintenance   Superintendent, now  doing it as a civil servant. Things I go tell my workers off the top of my head from years of Fixing Combat Aircraft I find myself going back to the books like a young buck.  it's frustrating.  Like you I always have my phone with me for notes or I would be lost.  I have actually left for the flight line an by the time I got out there forgot what I wanted to tell my mechanics.  LOL.  I promise brother it will get better as time goes along.  I still have my moments but they are getting fewer.  Thank you for your service to our wonderful country.  

 

Your brother arms

Joe

 

 

AirForce Vet's picture
AirForce Vet
Posts: 25
Joined: Feb 2012

I know exactly what you are going through.  Just like you I was on my game prior to being dx with BOT cancer stage 3 , HPV positive.  Had chemo and rads.  Brain box has not worked right since.  Even tho I recently retired from Active Duty.  I'm still an Aircraft Maintenance   Superintendent, now  doing it as a civil servant. Things I go tell my workers off the top of my head from years of Fixing Combat Aircraft I find myself going back to the books like a young buck.  it's frustrating.  Like you I always have my phone with me for notes or I would be lost.  I have actually left for the flight line an by the time I got out there forgot what I wanted to tell my mechanics.  LOL.  I promise brother it will get better as time goes along.  I still have my moments but they are getting fewer.  Thank you for your service to our wonderful country.  

 

Your brother arms

Joe

 

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

So I already lost a step after my bypass surgery concerning short term memory... I'm getting older and that's having an effect and now if I get chemo I might get chemo brain?

Ummmm... Uhhhhh.... wait... what was I thinking about?... Ohhh nevermind!

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Cause you're going to forget it anyways, LOL....

Sorry, my "New Normal" is actually my Abi-Normal on a mission...

JG

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