Emotional/personality changes

alexinlv said:

It's like living with
It's like living with someone else. I didn't expect this to happen!

My husband is defiantely a
My husband is defiantely a different person... really puts the in "sickness and in health" vow to the test. I want my husband back the way he was! When it comes down to it, I am so thankful that he is still here with me but that doesn't mean that we won't mourn the loss of the couple we used to be.

"We Can Never Go Back to What We Were Before"
Dear Alex

That's because he has not only changed physically - he has changed mentally - and emotionally. He is scarred now and the key for him (and you) will be how to adjust and live with the changes you have undergone.

This is not lightweight stuff, Alex...everyone just thinks "It's One - And We're Done." And that all that went under the bridge should just be forgotten. But, it never works that way for either party.

It's like trying to shove a square peg into a round whole....from your perspective, he's "done" and it's time to move on and get back to the way that it used to be.

With alot of time, Tony might make the adjustment and settle into a new rhythm...but it's not going to be because he's done with cancer. You might be done with cancer, but Tony isn't it.

And the why is because in the back of his mind, he's insecure and uncertain of what the days will bring him...in the back of his mind, he's worried about recurrence. I know we all like to think that we will never go through it again....and I hope you do not.

But, the odds say that recurrence is a big player in our battles...and that's what's eating at him, I think. He's lost some sense of control as well - and now, even though things look to be in order...his universe is still not right...and thus, he is acting out from what he is feeling.

I think that what Tony is feeling is completely normal. I just finished up my 3rd cancer battle in the past 8-years...my life has been stressful since treatment wrapped....slammed right back into work with heavy workloads...my turned turned ill and we spent every night of the next six-months until he passed...and then all of that....and now I have to handle his estate and financial obligations etc....it's a little overwhelming.

I don't find joy in much anymore....my life is just chores, responsibility and committment...I find myself going through the motions on many things....trying to pretend I'm happy....but I'm missing the secret ingredient...and can't find it.

It seems that over the past 8-years with what I've been through, I have forgotten how to have fun and relax anymore - with or without cancer. I've simply forgotten what it looks like - what it sounds like - and where to find it.

I don't know what it will take or how long it will take until things settle down...alot of regular life issues on my plate while I'm 'on break' as well.

My wife went through eight-years of this stuff, Alex...8-years every day, all day. I don't know how she did it. Alot of times I was too sick to watch tv on the couch...and when I did I'd fall asleep sitting straight up.

The thing is, and this is important to keep in mind, is that no one who does not directly have cancer can truly understand what that person feels - what their hopes - what their dreams are - and what their fears are.

As caregivers, you can get close...but you can never really get it...not you and not my wife or any caregiver. It has an indirect effect on you, which feels like a direct effect.

But, it's like anything in life, if it has not happened to us personally - then we can't truly understand all of the ramifications that come with it. We can empathize but can't sympathize.

If you broke your leg and I didn't it....I could understand to a certain level...and then if I broke my own leg, I would get it at the next level - see what I mean?

Medication might be in order - that's a personal decision for Tony and his doctor. If it was affecting every aspect or every waking minute of his life, that would be an issue and need to be addressed.

But, if he is having these 'fits of change', I think that is his subconscious trying to talk with his conscious self and it is expressing fears and concern and uncertainty to his waking brain - and then that manifests itself out through the actions you experienced the other day.

Just because cancer looks to be over, does not mean it is over - and it will never ever be over....sorry to say....as cancer patients, we will always live with the uncertainty that the next scan cycle will upset the apple cart and start the entire process over again.

No matter how much we medicate - no matter how hard we try and hide from it - it permeates our very existence - it is now firmly entrenched in our consciousness - and it is woven into the new fabric of our lives.....all who know us and/or love us, must hang on for the ride.

Twists and turns can come on any day, or any moment.

I know this is difficult...I'm functional, but I want more with my life....and I can't get it, because I work full-time and all I seem to be able to do is fight cancer - return to work - fight cancer - rinse and repeat. It leaves me a little hollow most days...

I want to set the course of my life now...I want more freedom to make choices about what I do with my days going forward...I don't want to be a "Have To" man anymore....I don't want to conform anymore to someone else's timeclock or what their idea of what I should be doing everyday is.

I just want to wake up and be - and have enough money to support myself and wiggle around a little if I choose.....but I can't.....I'm trapped between the two worlds of cancer and working.

BTW, crying is a good release...the fact that he feels comfortable enough to tell you, tells me something right now....he's crying out...he's reaching out...he's not quite sure how...so he is turning to you....don't turn away from him.....EMBRACE him instead.

I had to do all my tears driving to and from work....or I'd go to bed early to have time in bed alone to let my thoughts wander and have my emotions for the day wash over me.

I had to be private about it, because my wife looks to me for strength, so if I show her anything less, it upsets her. Tony is lucky to have a partner he can confide in like that.

Well, I've chewed your ear off long enough for this session.

Scars take a long time to heal...in a way it sounds to me like the metamorphosis is already in progess....he can't be "Happy Slappy" all the time - if he were, there would be something wrong.

For a year or so, I have wanted to talk about the post-cancer life and why people just think that all the problems just magically go away.

"If I could only be NED..."

Well, as you're seeing, there is more to that than meets the eye. While he's grateful, he is left with the fallout and the side effects and trying to find his way back.

In a way, when you're supposedly "cancer-free", the world begins to lean on you once again...the free ride is over and it's time to get back to normal.

That was part of my problem this past year...after successfully whipping cancer for the 3rd time, I was expecting the balloons to fall out of the ceiling - and the band to stary playing - and looking for the cake and ice cream - and the singing of he's a jolly good fellow...

All I found was that I was fortunate enough to return to the grindstone and go back to work...full of medical bills that I couldn't pay and all of the things that life throws at us...

It's a little disillusioning if I'm being perfectly honest.

Just give him some time...seek a doctor if he's open to it....sometimes we need to let our emotions wash over us...it's part of the healing process...but if meds are needed, I've read here how they work for folks.

Adjust your expectations and go with the flow...I'll get out of your way with this last thought:

"If you don't expect too much - you won't get let down."

That's a life's message as well as a cancer message.

Peace and contentment to you both...I know Tony will find the road in time....he will forever be changed, but he will find a way to adjust. Time and Patience, Alex....time and patience.

Take care,

-Craig

PTSD is very real
I think most of us can relate to the things he is feeling.

Perhaps it would help both of you to go to a support group or private counseling...for the PTSD. Check with the local American Cancer Society to see if they have any groups or have any suggestions for help.

I understand that this all seems strange to you, especially when things seem to be going well, but as Craig says it just never goes away for those of us who have had the diagnosis.

Post Tramatic Stress has only in recent year gotten a name because of our soldiers who return with problems, but it is not just a military problem.

Praying that you both can find something which helps.

Hugs,

Marie who loves kitties

Alex:
My George is the same way. The least little thing upsets the cart. I have no answer for you. Yep, it can make for a crummy day so the only thing you can do is look past it, they have/had the cancer and the caregiver does not so we truly do not understand how it can shake them to the core. Go with the flow and keep your listening ears on is about all you can do.

Hugs - Tina

Feelings
Hi,Dear.

It's certainly true that the emotional effects are there. I was diagnosed at Stage 1, yet I have it, too. As others have said, it's often when things settle down some, then the patient has time to have it all wash over him. I know for me that there's a different feeling when I even hear the world cancer. If I'm watching tv (usually mostly listening as I'm on the computer)and someone mentions cancer, my ears perk right up. I can't not listen, if I may use a double negative. The thing is, I listen, and I feel the funk washing right over me. It's like a shade being pulled down, and things go dark. I feel like I need a good cry every time.

Hang in there, dear. Cancer will totally lose its hold on either of you, but it WILL get better.

*hugs*
Gail

I know the feeling
Before cancer came into my life, I could think and remember and had self confidence and could tolerate a great deal (I'm a human resource manager with 240 employees who at least 1/2 think I should take and raise) Now, I can't remember crap and I find I have less (alot) toleration. I find myself second guessing myself when before I was taking the bull by the horns so to speak. I finished my treatments end of November '11 and I will be having my 3d cat scan on the 25th of this month...I know I have a better chance of a reocurrence than I have not having one, my sweet husband who has gone above and beyond taking care of me, doesn't like me being negative but I think that is my self defense... I am not who I was before and I'm pretty certain I will never be that person again. As for me, I wake up every morning and go to bed every night wondering not if but when "that other shoe is going to drop". I stopped taking my anti-anxiety meds, but my husband sweetly asked me if perhaps I might need to start them again. I'm afraid I've rambled..I apologize for that...I blame the chemo...but without the chemo....I applaud all the caregivers, when your loved one is physically diagnosed with cancer, I think, the caregiver is emotionally diagnosed with it. My husband and I have grown closer, we find that things we used to think was important really isn't. Both our outlooks have changed. Tell him he's not alone. Hoping he feels better soon!

PhillieG said:

Of Course it Changes Us
I haven't fully experienced it since I've yet to really stop treatments but I've found that I get into combat cancer mode at times and maybe some adrenaline kicks in and helps keep me moving forward. I certainly have times when I blow up but much of the time I let things just roll off me. While I certainly try to meet deadlines for things, if plans change...well plans change and that's that. I deal with the new situation.

With having cancer, I can not see how it wouldn't change a person in both good and bad ways. Then if after dealing with cancer, treatments, scans, uncertainty, etc., you finally find yourself NED, imagine crawling through a cave with spider webs across it. Those keep getting in your face. Spiders are on you, bugs are on you...it's dark (and stormy night...) and then you come out into the sun. About 10 minutes after getting out in the sun I could imagine getting a case of the willies where you just want to brush everything off you so you flail your arms and go nuts for a bit.

Well, maybe not a vivid picture for many. Think of the "other shoe falling". It doesn't always happen but many times it happens. All of us who've had/have cancer have gotten a wake up call. I would imagine its similar to a Near Death experience in many ways.
We are (more) aware of our mortality now.

Most everyone will chime in with their cure idea. If your husband is open to meds to help him cope then go for it. Not all are right for everyone, it may take some trial and error. Maybe so-and-so toughed it out, hooray for so-and-so! Maybe so-and-so hit the bottle too? Probably not a good idea.
The right Licenced Therapist can do wonders too

Being a Stage IV, living with cancer person I have found my journey to be a series of "New Normals".
Is the Old Me in there? I seriously doubt it. I do think a Better Me is in there but my life's changed in good and not so good ways.
That's (My) Life!
My best to you both, I have no doubt that you WILL get through this.
-phil

PTSD
I am so thankful that this topic has been brought up. I am almost 3 years NED and have been fighting this "new me" from the beginning. I wasn't happy with the new me...disorganized, forgetful, tired, and frightened person that I had become. The more I fought the more anxious I became because my resolve to come out of this funk wasn't enough to make it happen.

Two years ago I seemed to be slowly moving forward and then both of my parents became ill and died within 7 weeks of one another. I tended them until their last breath and then had the duty to take care of their estate. The combination of all of this threw me for a mental & physical loop that I am still trying to recover from. I have said all along that I think I have PTSD but I can't find much info concerning cancer patients. My doctor calls it depression & anxiety and I am on Zoloft. The Zoloft helps take the edge off but I am far from being who I used to be and at this point I don't see that happening ever. Like Phil said my life has changed in good ways and not so good.

This thread has helped me to know that PTSD is NOT my imagination. It is real.

I needed this ... to know
This thread is what I have been feeling in so many ways. My Oncologist changed my scan schedule from 3 months to 6 months and at first I was Thrilled.... but still have my port in because still told I am in the group most likely to recur. On a sunny day gardening and doing projects outside, listening to the loons on the lake and watching the hummingbirds I feel hopeful. Then a fellow teacher had a back ache saw a chiropractor, then did not feel like eating so went to the doctor, finally had an appointment when school was out to have a referral for a CT Scan and they found a mass near his pancreas. Had a referral to the Mayo Clinic, two weeks later surgery and lasted less than a month after school was out. I felt so SAD SAD SAD, now I know this is WOW I have made it this far, but he did not. Sounds like all those same feelings many of you have shared. We know we have changed, I use to be an outgoing person, a real people person but now I like solitude and nature. I need to get back to my Survivor Plan.... exercise, diet, Aspirin, Vit D and calcium.

I am glad to hear that your husband can cry and share with you what he is feeling. That is part of the ongoing healing. Our rational thinking side knows no one can predict the future and some people may be hit by a bus and we may still be here waiting for the shoe to drop so each day one needs work through these fears and reach out to others to know this is the new normal.
NB