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Long term mental/emotional effects.

You know nothing about my cancer journey was really what I expected. I thought treatment would be miserable, vomiting, frail, bed ridden; but, thankfully, I tolerated it really well. I never took one of those anti-nausea pills, I maintained my weight, my oncologist OKed road trips and plane rides, I rarely got sick with fevers. It was cake.

I thought I would be so eager to be done and back in the real world working and going back to school. At first, it was all going really well, I was really enthusiastic. I took a few classes that I was really interested in (rather than requirement classes) and really tried to ease my way in. By the end of the semester I was really struggling to finish. My focus sucked. My memory sucked. I took procrastination to a whole new level. (Level: I hope you're Harry Potter cuz you're really going to need magic to get this done in time). After that I decided I'd skip the next semester and focus on doing some freelance work. I thought maybe the academic setting was getting to me. But same story, I started out enthusiastic but fell apart. Sure, I've fallen apart before but nothing like this.

I can't help but compare my NOW with my BEFORE. I got straight A's, I was focused, over achieving, always finished my work and my memory was AWESOME. (Notice I didn't say anything about procrastination). Now I'm rarely done with my work on time, I've really let some people down and I tolerate mediocre work (blah). None of that used to fly.

I guess now I'm trying to figure out the WHYs and HOWs of it all. This is not what I was anticipating dealing with. It's really difficult. Part of it, I feel, is that I spent a huge chunk of my recent past doing nothing but cancer treatment and hospital visits, follow ups and CBCs which were all scheduled and regimented. All I really had to do was show up. So I'm having trouble taking back control of my life. I'm not sure how.

I feel like I don't read about this aspect of cancer often. What was your experience with the long term emotional/mental effects post treatment?
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Comments

  • 71 Comments sorted by Votes Date Added
  • I definitely have chemo brain - you cannot convince me it doesn't exist. Used to be as sharp as a whistle pre-treatment, and have been told by some doctors that it's really not a valid side effect. It's been improving though. I too, have a hard time getting things done on time or even remembering to finish things at all.

    My other issue (which is also improving) is that I have a hard time seeing into the future anymore. I used to daydream about where I'd be in 10 or 20 years - but now I'm more likely to think one or two years ahead. It's harder to make long-term goals that way.
  • Tell me about it...not even a month after my last chemo treatment, I was back in school...I've never had to study so hard before! but i found something that worked. I start Nursing school in January. This will be a challenge!
  • Hey all,
    Don't want to be a downer but 2 years after my last chemo treatment, my survivorship oncologist had told me that certain side affects of the chemo would be symptoms related to attention-deficient disorder and problems with concentration. It saddened me but at least I found an answer to why certain changes were going into effect.
  • I was talking with my cousin who is a nurse and she too was said I sounded like I have ADD.
  • I am definitely having similar issues. My concentration is not the same. I'm 6 months out and I seem to have some major dyslexia problems (switching words and letters around, not reading things right,) problems processing things, and major memory issues.

    I wanted to go back to school this Spring, but I am not sure I can handle it, so I am waiting until next Fall.

    I wouldn't say I was like you, Ligaya, where I was straight A's and really driven, but I definitely didn't have the issues I have now. I'm just hoping they get better with time.

    My nurses and docs said it is important for me to do brain exercises, i.e. Crossword puzzles, word games, even video games, anything that gets your brain thinking in a different way. I have this great Wii game called Big Brain Academy. It tests you on all kinds of cognitive thinking and it's fun so it doesn't feel like work. I feel like if I keep my brain working hard every day these problems will diminish.

    I haven't heard ADD yet, but I haven't seen my doc in a couple of months. Plus since I'm only 6 months out I don't want to jump to conclusions.

    Amanda, I'm glad things are improving! You are an inspiration to all of us. :D

    -Emily
  • DMMDMM Community Member
    Depression is extremely common for cancer survivors during and especially after treatment when we are trying to piece together our "new normal" life and can definitely affect how well our minds work from day to day.

    Some of the symptoms of depression:
    * difficulty concentrating, remembering details, and making decisions
    * fatigue and decreased energy
    * feelings of guilt, worthlessness, and/or helplessness
    * feelings of hopelessness and/or pessimism
    * insomnia, early-morning wakefulness, or excessive sleeping
    * irritability, restlessness
    * loss of interest in activities or hobbies once pleasurable, including sex
    * overeating or appetite loss
    * persistent aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment
    * persistent sad, anxious, or "empty" feelings
    * thoughts of suicide, suicide attempts

    Depression can of course be caused by the stress (physical & mental) of the whole cancer situation but the depression and memory issues can also be related to a thyroid that is not fully functioning. Some studies I have read and from what my doctors have told me is that in some cases for some people cancer treatments (chemo, as well as radiation) can affect the thyroid.

    Symptoms of Hypothyroidism (An underactive thyroid)
    *fatigue, exhaustion
    *feeling run down and sluggish
    *depression
    *difficulty concentrating, brain fog
    *unexplained or excessive weight gain
    *dry, coarse and/or itchy skin
    *dry, coarse and/or thinning hair
    *feeling cold, especially in the extremities
    *constipation
    *muscle cramps
    *increased menstrual flow
    *more frequent periods
    *infertility/miscarriage

    Symptoms of Hyperthryodisim (An overactive thyroid)
    *nervousness
    *irritability
    *increased perspiration
    *thinning of your skin
    *fine brittle hair
    *muscular weakness especially involving the upper arms and thighs
    *shaky hands
    *panic disorder
    *insomnia
    *racing heart
    *more frequent bowel movements
    *weight loss despite a good appetite
    *lighter flow, less frequent menstrual periods

    Regardless of cancer and/or treatment, us women folk are much more prone to developing thyroid problems as we age. It is usually recommended that women get screened (it's a very simple blood test) for thyroid issues starting around age 30, or earlier if there is a family history or some presenting symptoms. Some doctors are very good at screening for thyroid issues when a patient reports depression and cognitive symptoms, but a lot are not and that is where you should be proactive and ask your doctor.

    Whatever the reason (chemo, depression, thyroid, ADD and etc) for our "brain fog" after treatment, we just all have to remember that we have been through a lot and that our bodies and minds have taken a serious beating….we just have to be patient with ourselves as we heal.
  • TaraTara Community Member
    I'm a complete ADHD 'tard since treatment!! >:( Chemo brain definitely exists! Stupid early menopause doesn't help either :/.
  • I can't say that I'm ADD, but I definitely don't have the attention span that I used to. I also have chronic insomnia (compounded by cancer PLUS other trauma) that really doesn't help. I am experiencing PTSD as well as likely hypothyroidism, so putting all of these together definitely doesn't make for a happy Linds.

    Dawn, you are so correct about the patience. It's tough to be patient after so long sometimes, but it's definitely the best thing for us as we heal and find whatever our new "normal" is.

    Amanda - seeing into the future now I find difficult as well. Have you had any success with trying to overcome it? I'm trying to figure out a way to at least see myself through school right now, but I can't even do that anymore.

    I think time will only tell, but right now for me there is post-treatment physio, counselling, occupational therapy. I've also been through speech therapy. Any tips for any or all of us are more than welcome ;-)
  • i do know the "chemo brain" affect too. it really sucks. it has been a year since diagnosis and it is showing. before treatment i was able to write, type and do things with out having any problems. now when i type i have so many typos and end up rewriting things. i also have a hard time concentrating on things. i took classes through treatment and let me tell ya. it was hard. at work i get frustrated and confused easily and being a cashier that isnt a good thing.
    i know the feeling.


    Kicked my cancer's ass now fighting to kick other peoples cancer's ass!
  • I am experiencing much of the same. I was in my first year of nursing school when I was diagnosed (top of my class). Was treated with chemo and radiation for Stage 3b cervical cancer, I attempted to return to school this fall and I just couldn't do it. Being unable to focus and perform the way I was accustomed to has made me feel like a failure. I agree that this part of cancer...the aftermath, is not often discussed. Achieving the "new normal" is a process I was not aware of nor prepared for...but here goes!!

    Happy Holidays to All!
  • Good luck! Nursing school is tough in its own right.
  • I have yet to be able to go back to school after my 2nd diagnosis. It's partly me being paranoid, but the focus isn't there. Health isn't where it needs to be I don't think either. I still want to, but I'm not sure if it will happen at this point. I'm doing what I can to work on that. I was going to school in psychology and pre-radiation therapy... so I guess if I return I'll have a frame of reference lol.
  • I feel the same way and did not have any chemo. Started school a couple months after finishing treatment and my focus (even at work) is just not there. Could it be more of an emotional thing?
  • I'm new to this too and have experienced many of the same issues you guys note:
    • memory issues
    • concentration issues
    • reduced ability to manage emotional stress
    • reduced value on things I used to think were important, and others still do, resulting in slow or no engagement on things that I should/need to be
    • challenges in multitasking
    I think there is definitely some effect from the drugs on these cognitive skills, but I also think a lot of what affects this is that we haven't been using many of these skills when we're going through treatments and recovery, our perspective on life and what we value changes, and we've been through something traumatic and may be experience post-traumatic stress disorder (which can affect a lot of these things above).
    I would recommend you guys find someone to talk to about this - like a therapist. Maybe you can't concentrate well because you ultimately don't think whatever you are dong is what you really should be doing with your life, or your time. I think having someone who you can discuss this with, or can call you out on these kinds of things can really help. Embrace your new perspective on life and start doing what matters to you and stop doing what doesn't.

    Someone else noted the importance of practicing cognition skills (crossword puzzles, etc.) - I totally agree with this and I think it applies to a lot of the other issues too. The more practice I get at multitasking, the better I seem to be doing.
    Be more aware of what you are doing or not doing and think about why. I have struggled at work with delaying to do things I really needed to do because I just don't think they're really important in the scheme of things, or noticed I wasn't spending much time or energy on things I thought were overvalued. I think this comes from being in a position only a few months ago of trying to figure out how I was going to get enough food into my body or not throw it back up, or walk for 2 minutes without exhaustion. It kind of makes a lot of other things seem totally unimportant. I'm trying to just be more aware of when I catch myself feeling apathetic about stuff and decide if it's warranted or if it's something that while it doesn't really matter, it does need to get done and needs to get done well.

    Other things I'm doing to manage the concentration and memory issues:
    • Write everything down and review my to-do list constantly to evaluate what is important and urgent and what can wait
    • being more intentional about what I choose to say yes to and who I spend time with
    • Doing less so I'm doing something in a capacity that feels manageable before adding more responsibility or activities or stress
    • Managing stress and busyness with exercise, yoga, dance or meditation
    I hope some of this is helpful and I hope each of you continue to improve in these areas. I have since I went back to work, but still have to work on a lot of this too.
  • My goodness, its a shame it took me 3 months post treatment to look at this website. I often compare my pre-treatment self to post treatment and the difference is pretty drastic. Though I cant provide you with advice, it's definitely comforting to know others go through the same things im experiencing, to the point where I can read everyones post and check off their experiences as my own. Mentally I find myself struggling whether its with depression, memory, focus even my ability to articulate words are affected. I was asked to write my experience of treatment for the hospital I am going to and I find myself frustrated and incapable of providing an adequate description of my treatment. I hope everyone finds their way of dealing with chemo brain and I hope I find mine. Take care.
  • Haha, im glad you guys launched it!!
  • I was VERY fortunate not to have to do chemo or raditation because my cancer was contained and removed with the hysterectomy. But, depression and the menopause....SUCK! I was not the best at remembering before my cancer and now if I don't write it down, it don't happen. But I agree with Amanda...you have like to lives...BC and AC...before cancer and after cancer. It is hard to think about 10, 20, 30 years from now because we got ripped on that feeling of "Oh, not me...." But, now you live life to the fullest...do want you want...don't take it for granted...and for me get involved in helping others with cancer.
  • I am a nurse who does alot of shift work and a mother of two girls 1 and 3, so I already have a foggy brain and poor attention span. I haven't started chemo yet, so it will be interesting to see how I will turn out in 7 months time!! Yikes!! My poor husband, hope he has alot more patience in him. Maybe start on some memory exercises now.
  • I'm gonna be the old fart for a minute ... "You know in my remission days, we didn't even have spellcheck"
  • Ldr12Ldr12 Community Member
    Monique;608 said:
    I am a nurse who does alot of shift work and a mother of two girls 1 and 3, so I already have a foggy brain and poor attention span. I haven't started chemo yet, so it will be interesting to see how I will turn out in 7 months time!! Yikes!! My poor husband, hope he has alot more patience in him. Maybe start on some memory exercises now.

    Believe me, you're both capable of things you never DREAMED of :-)

    I agree with the memory and mind exercises now, and as much as you can through chemo too. I was unfortunately far to sick most of the time to keep them up constantly. But it was a great feeling once in a while to be able to figure something out that I wasn't sure I could do anymore.

    I will agree with many people's sentiment that I do compare myself now to before I was diagnosed. Even worse, I do it from before my current diagnosis, where things had improved, to now. BAD IDEA and definitely causes issues with the depression. But it's something that I try to break and still haven't been able to. One day....
  • Ldr12Ldr12 Community Member
    JVarounis;855 said:
    I'm gonna be the old fart for a minute ... "You know in my remission days, we didn't even have spellcheck"

    HA! Too funny. But when I went into remission, I don't know if I remembered what spell check was. Does that count? LOL!
  • CareyCarey Community Member
    I'm struggling with issues post treatment too. I have some lingering memory and attention issues. They're compounded by the fact that in my job I'm expected to be super organized and remember a lot. Now I spend a lot of time at work organizing and making lists. It feels like a waste sometimes. I think I was able to mitigate some of this by reading a lot and teaching myself guitar. I've also been feeling isolated and a bit down since I returned to work. It feels like the stress from the job, having to live apart from my wife, fear of a relapse, and money are all in a perfect storm right now. It's also hard seeing my friends and brother all seemingly have it so easy. No one seems to have the cares and hurdles I've had to face. It makes it hard not to feel like I'm competing with them. I also want to make up for all the time I lost. That doesn't help either. The funny thing is I had read about all these issues when I was in treatment and tried to set my self up to avoid them, but ran into them anyway. I'm working to reach out to other young survivors in my city, which will help. And the fact all my friends are free on weekends and I can see my wife helps too. But the weekdays are a bit rough.
  • I finished chemo and radiation about six months ago. I thought I was going to suddenly have the clouds part, the sun shine and everything would fall back into place. It didn't happen like that. I won't get into the nightmare I've been dealing with regarding my morally, ethically and legally bereft employer, but that constant strain, plus starting on Tamoxifen, plus a personal life in shambles, plus losing my home and everything I owned kinda sorta put me into suicide mode.

    To this day I can't concentrate and it doesn't seem to be improving. I go to do something and lose it, mid action. I can't put together a photo frame or remember that the car is right in front of the doors of the store so I will find it easier. I have zero tolerance for a raised voice, an ignorant comment or insensitive people who tell me to "get out of my rut" or "go for a walk".

    It takes me much, much longer to perform tasks that I once used to without even thinking about them. Like an auto pilot. But that switch is now broken.

    I finally had no choice but to seek help for the depression since I was actually to the point of choosing locations to kill myself in which clean up would be easier. But it's not an easy road and very few people that have not been there even remotely "get it".

    Depression exacerbates all of these symptoms we're discussing. Don't let the stigma society has attached to psychiatrists stop you from getting help. You got help to fight the cancer, what makes you think that you can fight THIS on your own?
  • Demyss -

    You are one of the first people to verbalize exactly how I feel. I was fired after being diagnosed and lost my apartment, gave up my cats, and went into debt. I had to move back home with my parents because I was a single woman.

    I too have had nightmares about death and dying - they started about 6 months post-treatment. I had to start taking Xanax at night, which has helped tremendously.

    It was like the first 3 months I was on Cloud 9 - I was cured and excited. And then I crashed. Hard. And have been battling to pick myself up since. I am lucky to have found a great man that supports me, and I have started working again. But emotionally, I am a disaster. I have been suicidal and anxious. I gained a ton of weight for no reason. And if one more person says I just need to move on or exercise a bit more, I swear I am going to rip their head off!

    LOL - it is so good to know that other people have the same experience as I have felt very alone and frustrated for quite some time now. Thank god for forums such as these.
  • Thank you Dawn~depression has definitely found it's way here...for both Ben and I. He didn't have chemo but between brain surgery, seizures and radiation it's wearing him down...somedays are better than others. I've noticed a lot of differences though, some that only I have to endure alone. He doesn't remember a lot. The finding a new normal is very difficult. for all of us...our 8 year old daughter is very resentful and acting out...we are all getting as much help as we can find! We have hope. :) Hope for better days. Or good days!
  • I say to the scientists: Hurry up already and expedite TARGETED therapies rather than sending warp's through the Matrix of Me. I have experienced cognitive malfunction, memory loss, depression, etc. so severely that I have since wondered if I would have known, would I have chosen chemo? I DO have ADHD and am dyslexic & have spend years and lots of $ treating it. My oncologist did warn me that all those things would be amplified but I'm seeing a much slower recovery than I had expected. In addition, my cancer is hormone sensitive so I have to take estrogen blockers. Who knew that overnight menopause would have such a dynamic effect on me? This subject was not discussed when looking at my treatment options. Girls my age don't know about menopause and it's complications because we think we will learn about it when we need to....years down the road. However, I'm learning that estrogen has a HUGE impact on the skeletal system and the list of treatment related side effects has only grown since I started this. I know there is a lot to cover and we don't hear everything the doc's say due to shock, etc. but I feel that 'informed consent' should be restructured and tailor made for individual cancers with a whole new component of compassion which addresses age-specific possible outcomes and I think this task should be assigned to a big outfit, like NCI, and be standardized. They are so focused on treating the cancer and increased survival rates but aren't really considering the effects of post-treatment complications and the importance of an individualized quality of life. ALTHOUGH, I'M THE 1ST ONE TO TELL YOU THAT MY FAVORITE SIDE EFFECT OF TREATMENT IS L-I-F-E!
  • DMMDMM Community Member
    amandabcs;1635 said:
    ALTHOUGH, I'M THE 1ST ONE TO TELL YOU THAT MY FAVORITE SIDE EFFECT OF TREATMENT IS L-I-F-E!

    Love it! :)
  • I 2nd that one! :) Love it!
  • Totally agree! Thank you so much for reminding us that even though will still have problems/issues/etc.....we are here, alive and kicking!
  • nicolegnicoleg Community Member
    amandabcs;1635 said:
    ALTHOUGH, I'M THE 1ST ONE TO TELL YOU THAT MY FAVORITE SIDE EFFECT OF TREATMENT IS L-I-F-E!
    I love that!

    I am completely shaking my head cause everyone is describing how I feel.... Im even having trouble reading these posts I lose my place and have to go back a line! I even had to see an optomotrist to check out my eyes cause I felt like I couldnt focus, I already wear glasses but felt they were getting worse... anyways I completely aggree with all of you and finding the new normal is hard and hearing peoples comments and stares dont help me feel any better.. right now I get weird looks from girls about my fab new hair style since I look like a mexican version of lil orphan annie with my small curly fro... its in a really ugly stage right now and I HATE IT!!!! I get weird looks from everyone like "why would she style her hair that way" the looks from guys helps me feel sooo much better about dating in general (totally being sarcastic)... yeah and hot flashes are not the business!!! My bestfriends would laugh cause we would be somewhere and all of a sudden Im sweatin like a pig! So here I go whippin out my lovely fan and start flappin away... after a while they were all hot from dancing (we were at a wedding) and wanted to use my fan... I was like a little hot are we? But thats life after cancer.... my new normal ...eh