Emotional Effects of Brain Tumors

joanamck

Hey - Has any body had any long lasting negative emotional effects from brain surgery, radiation, having cancer, etc?

stayingcalm

Sadness
I think we all do to some degree or other, after all, the whole trip is a traumatic experience in itself. Personally, I have some terrible moments of grief for the person I was before dx, for the things I was able to do but never will again, for all that has been lost. I just deal with it, get busy with things I can do and try not to beat myself up over the things I can't.

Vulgarism

Not particularly, no. Maybe
Not particularly, no. Maybe I'm just a little less tolerant of complaining?

zedgal

You nailed it!
Absolutely. I have been struggling with a combination of long term effects from radiation. I had brain surgery to remove a large Grade II ependymoma @ age 39. I felt like a million bucks after surgery recovery. Then I started IMDR type radiation to the 4th ventricle deep in the brain & the surgical area with margin (posterior fossa above the motor cortex). I received 5100 centigray over 6 weeks from May 09 to June 09. Due to the angle required to get deep into the brain, the medulla oblongata (nausea center location) was affected badly. I had extreme nausea, GI issues, medication issues - taking 3 pills to manage side effects of one, extreme fatigue, depression - although in talking about my illness I always felt like I was speaking in 3rd person about someone else, and anxiety about my future & my ability to remain in charge of raising my 3 kids (I'm a single mom). Treatment ended a long time ago but the fatigue persists. The nausea ended last spring, finally! I still sleep in until 11am, sometimes can't get out of bed. I'm taking Paxil for anxiety & Ritalin for energy issues. I recently lost my job/insurance, so I really notice when I skip the Ritalin that I cannot function. I had never taken any Rx long-term, but it has become crystal clear to me that without it, I can't even attempt to maintain a semblence of who I once was - a energetic, competitve athlete! I had asked my Onco numerous times as to WHEN AND HOW LONG this would persist. Unfortunately, they cannot give you anything solid as an answer, just that it is different for each individual. I have been contemplating applying for L/T Disability through SS admin but am discouraged at how they deny everyone and put you through a horrendous appeals process. I just don't have the energy to do this & I need help figuring out most routine things so an undertaking such as this seems impossible. I am also thinking about emailing or calling my cancer center to see about after care. They are making headway at recognizing that treatment & care doesn't end when you complete their course of treatment. Hope this helps. I too am searching for answers, kinship and help. It's good to know I'm not lazy and just going through recovery!

btcat

Oh yeah! I have dealt with
Oh yeah! I have dealt with depression all my life and in the last maybe 7 years developed anxity/stress issues. I'm 27 years from diagnosis of a cancerous brain tumor at near 11 years old. I had an operation, radiation and chemo. The depression was added to by the horribly cruel treatment I experienced in school and the anxiety/stress issues seem to have been enhanced and triggered by a benign tumor on my head diagnosed and removed in the fall of 2003.

tlhpedspt

Yes, I have struggled with
Yes, I have struggled with this after glioblastoma november 2004 surgery and treatment. It took trying out several different medicines (along with some counseling) before successfull. I still have some days where things aren't so good but definetly alot better with the med that works for me against anxiety and depression and mood issues.
Terri

scia65

zedgal said:

You nailed it!
Absolutely. I have been struggling with a combination of long term effects from radiation. I had brain surgery to remove a large Grade II ependymoma @ age 39. I felt like a million bucks after surgery recovery. Then I started IMDR type radiation to the 4th ventricle deep in the brain & the surgical area with margin (posterior fossa above the motor cortex). I received 5100 centigray over 6 weeks from May 09 to June 09. Due to the angle required to get deep into the brain, the medulla oblongata (nausea center location) was affected badly. I had extreme nausea, GI issues, medication issues - taking 3 pills to manage side effects of one, extreme fatigue, depression - although in talking about my illness I always felt like I was speaking in 3rd person about someone else, and anxiety about my future & my ability to remain in charge of raising my 3 kids (I'm a single mom). Treatment ended a long time ago but the fatigue persists. The nausea ended last spring, finally! I still sleep in until 11am, sometimes can't get out of bed. I'm taking Paxil for anxiety & Ritalin for energy issues. I recently lost my job/insurance, so I really notice when I skip the Ritalin that I cannot function. I had never taken any Rx long-term, but it has become crystal clear to me that without it, I can't even attempt to maintain a semblence of who I once was - a energetic, competitve athlete! I had asked my Onco numerous times as to WHEN AND HOW LONG this would persist. Unfortunately, they cannot give you anything solid as an answer, just that it is different for each individual. I have been contemplating applying for L/T Disability through SS admin but am discouraged at how they deny everyone and put you through a horrendous appeals process. I just don't have the energy to do this & I need help figuring out most routine things so an undertaking such as this seems impossible. I am also thinking about emailing or calling my cancer center to see about after care. They are making headway at recognizing that treatment & care doesn't end when you complete their course of treatment. Hope this helps. I too am searching for answers, kinship and help. It's good to know I'm not lazy and just going through recovery!

I take pills to get up and
I take pills to get up and then to relax and then to sleep. I have down moments asking myself how did I get here. But I have to snap out of it I have 3 kids to be strong for. I hate that word CANCER

Fusionera

Emotional Effects of Brain Tumors
Hi JM,

Oh yes I have had emotional effects for sure. Since they removed my right temporal lobe my inhibitions are lowered, which also means I tend to get more emotional than I used to before. Something has happened though - I've definitely had a personality change, which in some ways was good for me. They took my right temporal lobe and now I have a spine, so to speak. My tolerance for BS is WAY lower than it used to be. LOL I mean that.

The other JM

carmtin

stayingcalm said:

Sadness
I think we all do to some degree or other, after all, the whole trip is a traumatic experience in itself. Personally, I have some terrible moments of grief for the person I was before dx, for the things I was able to do but never will again, for all that has been lost. I just deal with it, get busy with things I can do and try not to beat myself up over the things I can't.

Sadness
I definitely agree, I know from my own surgery that this has been a traumatic experience. I think for myself the worst part has been the memory loss and not being able to get the correct words to come out. I've also been very impatient and easily angered.

carmtin

Fusionera said:

Emotional Effects of Brain Tumors
Hi JM,

Oh yes I have had emotional effects for sure. Since they removed my right temporal lobe my inhibitions are lowered, which also means I tend to get more emotional than I used to before. Something has happened though - I've definitely had a personality change, which in some ways was good for me. They took my right temporal lobe and now I have a spine, so to speak. My tolerance for BS is WAY lower than it used to be. LOL I mean that.

The other JM

Emotional Effects
I agree with what the other JM said, I too have become very intolerant and I am also, impatient. I have good days and bad days as well.
Some days are very emotional for me and others are not.

palmyrafan

Emotional Effects
I think it depends on the individual, the length of time since surgery and radiation / chemo, and what their support system is.

I am 17 years post-brain surgery, 15 years post radiation therapy. I have occasionally been depressed over the things I have not been able to do; however, I have learned that a new "normal" is okay too. I focus on what I can do. I can't ride roller coasters anymore. No big deal when we go with the kids and grandkids to the amusement park, I just spend my time watching the little ones so the older kids can have a great time. It's a win-win situation.

But I have found that this was actually a blessing in disguise. Oh not the brain cancer, but what I have learned from it. I grew up in ways I didn't know I needed to. I learned patience, compassion, tolerance - all within myself. I used to be a perfectionist with myself and I have since learned that it's okay if the grandkids can write their names in dust on the end table cause I missed it when cleaning....lol....

It is considered normal to go through the range of emotions. It is okay to grieve who we once were. Sadness, joy, grief, anger, acceptance....they are all part of the process. But it is knowing that which will help you the most.

I was told before they even did surgery to get into therapy. I did and I am still in therapy. It helps to bounce things off someone else who can say to you "what were you thinking" or "you are absolutely right to feel that way". It helps me keep things in perspective.

Having a great support system also helps as well. My husband told me that I was drafted, but he enlisted when it came to my brain cancer. I give him the option of an "out" whenever it rears its ugly head. For 17 years he always says the same thing. That and "what part of my marriage vows don't you think I take seriously". He is my anchor.

Difficult? Oh you bet. But I believe we are all dealt a hand in life and it is how we play that hand that speaks to our character. If I were to put my cancer in a pile with everyone else's issues and troubles, I would take my cancer back. At least I know what I am dealing with.

DistancerunnerXC

palmyrafan said:

Emotional Effects
I think it depends on the individual, the length of time since surgery and radiation / chemo, and what their support system is.

I am 17 years post-brain surgery, 15 years post radiation therapy. I have occasionally been depressed over the things I have not been able to do; however, I have learned that a new "normal" is okay too. I focus on what I can do. I can't ride roller coasters anymore. No big deal when we go with the kids and grandkids to the amusement park, I just spend my time watching the little ones so the older kids can have a great time. It's a win-win situation.

But I have found that this was actually a blessing in disguise. Oh not the brain cancer, but what I have learned from it. I grew up in ways I didn't know I needed to. I learned patience, compassion, tolerance - all within myself. I used to be a perfectionist with myself and I have since learned that it's okay if the grandkids can write their names in dust on the end table cause I missed it when cleaning....lol....

It is considered normal to go through the range of emotions. It is okay to grieve who we once were. Sadness, joy, grief, anger, acceptance....they are all part of the process. But it is knowing that which will help you the most.

I was told before they even did surgery to get into therapy. I did and I am still in therapy. It helps to bounce things off someone else who can say to you "what were you thinking" or "you are absolutely right to feel that way". It helps me keep things in perspective.

Having a great support system also helps as well. My husband told me that I was drafted, but he enlisted when it came to my brain cancer. I give him the option of an "out" whenever it rears its ugly head. For 17 years he always says the same thing. That and "what part of my marriage vows don't you think I take seriously". He is my anchor.

Difficult? Oh you bet. But I believe we are all dealt a hand in life and it is how we play that hand that speaks to our character. If I were to put my cancer in a pile with everyone else's issues and troubles, I would take my cancer back. At least I know what I am dealing with.

Caregiver perspective
The emotional effects on me have been profound.
I know that my wifes disease and treatments have taken years off of my life.
I look in the mirror 19 months out and I don't recognize the guy in the mirror anymore.
The bags under the eyes, the grand canyon like worry lines..
The treatments that she had to stop, the idea that she stayed one step ahead of recurrence and then without warning from any of the experts, part of the treatment came along and changed my 51 year old companion into a 9 year old.
So, now the stress is in fighting 2 battles instead of one.
This is not news to anybody.
Everybody on here knows exactly what I'm talking about.

palmyrafan

DistancerunnerXC said:

Caregiver perspective
The emotional effects on me have been profound.
I know that my wifes disease and treatments have taken years off of my life.
I look in the mirror 19 months out and I don't recognize the guy in the mirror anymore.
The bags under the eyes, the grand canyon like worry lines..
The treatments that she had to stop, the idea that she stayed one step ahead of recurrence and then without warning from any of the experts, part of the treatment came along and changed my 51 year old companion into a 9 year old.
So, now the stress is in fighting 2 battles instead of one.
This is not news to anybody.
Everybody on here knows exactly what I'm talking about.

Caregivers
I understand exactly where you are coming from. That is why I always give my husband an "out" when new treatment is needed.

I see the toll it has taken on him. He is there for every appointment with every doctor, makes all the phone calls, handles the insurance company, etc.

But I also am HIS biggest cheerleader. i encourage him to pursue his own interests: golf, guitar, stained glass, racquetball, swimming, time with the kids and grandkids, whatever outlet he needs to be himself and do something normal. He is also in therapy; he sometimes comes with me and he also has his own private time with the therapist. It's a good outlet for him. He also has his full-time job to keep him busy, which he loves.

But please, don't ever think that for one minute, we (at least I) don't know the toll it takes on you, the caregivers. You have given up a great deal to do battle with us; and while we may not always say it, "thank you" for all that you have done, all that you do, and all that you have personally sacrificed to help your beloved wife. The losses are hard, but the wins are your sweet victory too. Please don't ever forget that.

God Bless You!

johngiustino

for sure
I am 43 years old, married with 2 kids. In early October last year I was having some weird neurological issues in my left arm (tingling and numbness) that culminated in some very bad headaches at a meeting at work. My colleagues urged me to go home and get some rest - I chose to go to the emergency room. That evening after a MRI the doctor leaned over and told me, matter-of-factly: You have a brain tumor. I did not even think of myself but immediately cried out "my kids, what are my kids and wife going to do". I am lucky it was 99+% removed according to the neurosurgeon but unlucky it was GMF. As I learned more about the disease and got the grim prognoses from the doctors, I only felt worse and worse and cried spontaneously, usually at night by myself, for my family. This went on for the first couple of months. As I got into the routine of the radiation/chemo I stopped this behaviour, but I must admit I have a probably unhealthy and nearly constant thought about dying: when it will happen, how it will effect my family, the financial details, and even pondering what happens with life after death. Being agnostic does not help the latter question. I am getting better. These kind of thought come less frequently and I try to focus my fatigued energy on my kids or work. My wife has been great through all this and has done so much to help me. She is the best. It makes feel guilty to just sit around - but often sitting and sleeping is all I can do on my 5/23 Temador schedule. I have my emotional days still, but to be honest,a lot of what I used to worry about, including work, seems like small potatoes. With each new MRI that shows no recurrance, my spirit improves. I need to stay strong for my family. And maybe there is nothing to worry about, unless something happens, and who knows when that will be.

palmyrafan

johngiustino said:

for sure
I am 43 years old, married with 2 kids. In early October last year I was having some weird neurological issues in my left arm (tingling and numbness) that culminated in some very bad headaches at a meeting at work. My colleagues urged me to go home and get some rest - I chose to go to the emergency room. That evening after a MRI the doctor leaned over and told me, matter-of-factly: You have a brain tumor. I did not even think of myself but immediately cried out "my kids, what are my kids and wife going to do". I am lucky it was 99+% removed according to the neurosurgeon but unlucky it was GMF. As I learned more about the disease and got the grim prognoses from the doctors, I only felt worse and worse and cried spontaneously, usually at night by myself, for my family. This went on for the first couple of months. As I got into the routine of the radiation/chemo I stopped this behaviour, but I must admit I have a probably unhealthy and nearly constant thought about dying: when it will happen, how it will effect my family, the financial details, and even pondering what happens with life after death. Being agnostic does not help the latter question. I am getting better. These kind of thought come less frequently and I try to focus my fatigued energy on my kids or work. My wife has been great through all this and has done so much to help me. She is the best. It makes feel guilty to just sit around - but often sitting and sleeping is all I can do on my 5/23 Temador schedule. I have my emotional days still, but to be honest,a lot of what I used to worry about, including work, seems like small potatoes. With each new MRI that shows no recurrance, my spirit improves. I need to stay strong for my family. And maybe there is nothing to worry about, unless something happens, and who knows when that will be.

Emotions
It is normal to feel guilt as one of the emotions. Guilt that maybe we aren't doing enough. Guilt that this is happening to us and our family. A little guilt goes a long way. But you didn't ask for this! Stop claiming the guilt for things you can't do and instead focus on what you can do. Can you read a book to your children? Can you have a discussion with your wife? Can you nagivate around the house on your own? Can you help your wife with household chores? If you answered yes to any of these, then you are not just sitting around.

You have a new "normal" at least for the time being. Embrace the time that you have been given with your family. You are in the battle of your life right now so you need to take care of you. Tired? Take a nap. You're not giving in to the cancer, you are letting your body rest as it needs to do so it can fight only one battle at a time.

Focus on one task at a time. Baby steps. It is easier than trying to look at the big picture. I know it is hard but it won't seem so daunting if you only focus on the present - today. What can you accomplish or complete today? Don't focus on the future as much because it isn't here yet. Tomorrow will bring its own set of issues and there is no sense in worrying about what tomorrow holds.

Remember that you will go through all the emotions, sometimes more than once. Acceptance, grief, denial, joy, sorrow, guilt, etc. That is normal. Trust me, anyone who is fighting any type of cancer and is happy 24/7 ain't rowing with both oars in the water.

Good luck and God Bless!

Kimberlyann72

tlhpedspt said:

Yes, I have struggled with
Yes, I have struggled with this after glioblastoma november 2004 surgery and treatment. It took trying out several different medicines (along with some counseling) before successfull. I still have some days where things aren't so good but definetly alot better with the med that works for me against anxiety and depression and mood issues.
Terri

how are you doing now?
Please let me know.

palmyrafan

Long term effects
I think it is an individual experience.

I had a hard time accepting my new "normal". I was used to be able to work full-time (I loved to work) and now am not able to work. That was hard for me. My identity was wrapped up in my career and who I had become. It was hard to shed that and realize that who I am now is okay too. I am still me but a a different me and different is not necessarily a bad thing. But it can be hard when you are trying to learn your limitations and what you can and can't do.

For instance: I now have to pace myself and plan out my week ahead of time so I don't use up all my energy. Before diagnosis, surgery and radiation, I never gave it a thought. now eat 4-5 small meals a day to help keep my sugar levels, electrolytes, etc. in balance instead of 3 big meals a day.

Again, it is a personal journey that we all are taking. We have the power to make it or break it. It is our choice on how we handle it.

Teresa

DistancerunnerXC

palmyrafan said:

Long term effects
I think it is an individual experience.

I had a hard time accepting my new "normal". I was used to be able to work full-time (I loved to work) and now am not able to work. That was hard for me. My identity was wrapped up in my career and who I had become. It was hard to shed that and realize that who I am now is okay too. I am still me but a a different me and different is not necessarily a bad thing. But it can be hard when you are trying to learn your limitations and what you can and can't do.

For instance: I now have to pace myself and plan out my week ahead of time so I don't use up all my energy. Before diagnosis, surgery and radiation, I never gave it a thought. now eat 4-5 small meals a day to help keep my sugar levels, electrolytes, etc. in balance instead of 3 big meals a day.

Again, it is a personal journey that we all are taking. We have the power to make it or break it. It is our choice on how we handle it.

Teresa

Try posting this again
Our neuro-doc is having me find a psych doctor for Jo.
He thinks based upon the fact that the swelling in her brain has gone down and there is no recurrence that her dementia problems may be psychological.
We haven't had much in the way of conversations since January..
She is not interested in doing the housework that she once took so much pride in.
I do it because it reminds me of what things were like a couple of years ago.
Once, I did some loads of wash and dryed the loads and set the pile of clothes right next to the couch that she is permanently affixed to...staring at the tv.
I just wanted her to fold them.
That was at 4:30a.m. just before I set off for work.
At 4p.m. that night, they were still there..she walked around the pile just to go anywhere.
Since January, I've done all the washing, cooking, what cleaning that is done and I am not sure whether I should get mean about it...I mean like a coach mean.
I know she understands things and can sometimes suprise me with facts etc...but she is not interested in her house anymore.
Heck, I don't blame her...3 brain surgeries, chemo radiation and radiation necrosis...
Yeah, the emotional thing is for real.
The neuro doc says get the psych eval before she does any other physical or cognitive therapy....maybe he's right.

palmyrafan

DistancerunnerXC said:

Try posting this again
Our neuro-doc is having me find a psych doctor for Jo.
He thinks based upon the fact that the swelling in her brain has gone down and there is no recurrence that her dementia problems may be psychological.
We haven't had much in the way of conversations since January..
She is not interested in doing the housework that she once took so much pride in.
I do it because it reminds me of what things were like a couple of years ago.
Once, I did some loads of wash and dryed the loads and set the pile of clothes right next to the couch that she is permanently affixed to...staring at the tv.
I just wanted her to fold them.
That was at 4:30a.m. just before I set off for work.
At 4p.m. that night, they were still there..she walked around the pile just to go anywhere.
Since January, I've done all the washing, cooking, what cleaning that is done and I am not sure whether I should get mean about it...I mean like a coach mean.
I know she understands things and can sometimes suprise me with facts etc...but she is not interested in her house anymore.
Heck, I don't blame her...3 brain surgeries, chemo radiation and radiation necrosis...
Yeah, the emotional thing is for real.
The neuro doc says get the psych eval before she does any other physical or cognitive therapy....maybe he's right.

Wife
I am sorry that you are having such a difficult time with your wife. And it is normal for you to get angry. Your life has been turned upside down too. And you know what? This SUCKS!! Say it. It sucks!! Doesn't that feel better? I finally said it after 17 years at my sister's urging and she was right.

You are a survivor just like your wife. I know that if she realized what was going on, that she would do what she could to change it. But it is also important for you to remember that everything in her brain has changed. I know it seems hard to believe but when someone tinkers with the cognitive parts of our brain, we can't always get that back.

As for not being interested in the house anymore, understand that she is choosing her battles which are important to her. She may not place the same sense of pride on the house cleaning and/or laundry, etc. that she used to. I used to be a perfectionist, but now the house is lucky if it gets cleaned once a week. Oh I still do the kitchen and bathrooms but dusting is no longer a weekly event, more like maybe monthly. Why? Because I forget to do it. Not on purpose, but it doesn't hold the same priority for me that it used to.

I would get your wife into some kind of therapy if she isn't already. She could also be severely depressed and this is how the symptoms are manifesting themselves.

Best of luck to you and your wife. Hang in there!

Teresa