Difficulty Moving Forward After Treatment
I finished radiation over a week ago. I thought by this time
I would be feeling such relief for finally having it behind me. Instead I feel
mentally and physically exhausted, and I'm finding it so difficult to move
forward. While I'm still in treatment (Herceptin infusion every three weeks
until Sept.), the major stuff is behind me. I've done chemo, surgery and
radiation. Every night I make a list of things I want to accomplish the next
day - not one thing gets crossed off my list. Lately, all I want to do is
sleep. I seldom leave the house and when I do, I can't wait to get back home.
I've lost all interest in the things that used to make me happy. I rarely log
on to the computer anymore. I've been having some cognitive issues and I'm
terrified to mention them to my MO - hoping that it's not some sort of
progression. I want to be done with all of this. I don't want more testing, I
just want to get back to my life. My RA is going crazy - It seemed to be asleep
while on chemo and now it is waking up with a vengeance. I developed an upper
respiratory infection a week before my last radiation treatment, and I'm not
able to shake the cough associated with it.
I've gone through a lot in my lifetime, and I've always been
able to move forward. Now I feel like I've lost my compass - I'm stuck. I'm so tired of fighting to feel good every
day. Then I feel guilty for expressing those feelings when others are going
through so much more. I want my joy back, and I have no idea where to start. I've
told my family I will not be joining them for Easter, and I've cancelled a day
trip I had planned with my husband on Saturday. I just don't have the energy or
the will. I don't like feeling this way, but I'm at a loss as how to get past this.
Are these normal feelings after treatment is finished?
Comments
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Normal, normal, normal. Your reactions are primarily physiological, and probably due more to rads than all that went before. I was perfectly useless for months. My RO prescribed ritalin, which did give me some energy, but it was time my body needed. Do give your RO a call--they have resources and hear this all the time.
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I am so glad I started reading this. I thought after chemo surgery radiation I would be tired but I can make it through 2 hours of going out and then I'm wiped out. My family doesn't understand. People think you're finished with treatment, now start living your life. I have had joint pain especially in my knees and I can't sleep. I feel like an old lady with all these medical issues and I'm in my 50s. I am young at heart but that part of me is gone. And then I get depressed because I can't do a lot. I feel like people think I'm not grateful that I made it through this but I am but I am wiped out. I can't work and money is an issue. I had to move in with my sister and it makes me angry that everyone else can go out and do things without blinking an eye. I wish I could make a routine daily so I'd feel somewhat normal. I don't feel good about myself and I feel like people think I'm not trying hard enough. I said the other day I was so grateful I could clean. But I paid for it wiping me out for days. I'm single with daughter attending local college living in a 2 bedroom small condo with a dog. Any suggestions because I am overwhelmed and I don't know where to go for support like I need a life coach that understands breast cancer. Thanks.
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Brookside & Kay, thank you for the advice. I went to my MO last week and he told me the same things. He wanted to put me on an antidepressant, but I decided to give it a few weeks first. I stopped trying to get things accomplished and decided to just heal first.
Brady, the ladies here gave excellent advice. I'm trying really hard to take it and go at my own pace. I hope you can do that too.
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"...People think you're finished with treatment, now start living your life..."
Ah, yes. After finishing treatment, so many people said, "... it's over, it's behind you..." Uh, not quite. Everything about a cancer diagnosis is traumatic and, once that biopsy comes back positive for malignancy, everything happens so fast. Diagnostic scans, surgery, treatment, boom, boom, BOOM! You're making life-altering decisions in an incredibly short period of time. Your emotions get left behind because you're overwhelmed and scared, and - sometimes - in sheer self-protection, you shut them down and push them to one side, just so that you can cope and do what you have to do to survive.
Once treatment is over, your emotions suddenly catch up and, sometimes, the fear and anxiety is even more overwhelming than it was in the beginning. And, since you never had time- or the energy to process all those feelings fully while in treatment, BOOM!!! They, suddenly, come to the fore, and demand your time and attention RIGHT NOW. People who've never, personally, heard the words, "... you have cancer..." directed at them, can't often grasp this delayed reaction. For them, the scary part is past; for you, it's just getting started. Celebrate!
I know that it sounds like a horrible cliche, but it's very true: only time will help. Give yourself the gift of time. Time to grieve, time to deal with the anger and uncertainty, and time to heal. Don't worry about what other people think you should be doing- or feeling. Sit back, find the quiet centre of your soul, and let all the emotions wash over you. Accept that you have some physical- and emotional healing to do right now, but open yourself to the possibility that it will get better over time and you will begin to live life again.
After treatment ended, it took me nearly a year to get my head around "... what the HELL just happened !?!????..." and another year to really feel like I was moving forward and enjoying life again. It took a lot of solitary time and time phutzing in my garden, and doing other things I enjoy doing (i.e., knitting, reading, canning, biking) to philter out all the noise and hear my own voice again. In the beginning, it bothered me that people thought I was "brooding" and "not getting over it", but I learned to shut them out and do what I instinctively knew I needed. Time to process.
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slowdeepbreaths - my BS was sending his patients who had just finished active treatments to a study with the USF School of Nursing on Mindfulness Based Stress Reduction. I participated in this study and learned a number of helpful things. One is that the end of treatment can bring on an unease or anxiety, that can express itself as fatigue or fear, because even though we are glad to be free of so many doctor appointments and would like to resume our normal lives, the concern that we are not being "watched" as closely, and subliminally this is frightening. In this study we were taught how to meditate, and focus on living in the present - not in the past - or the future. Living in the past in terms of wanting what we used to have, or in the future in terms of wanting to live going forward in the same way we used to. Rather, living in the precise moment we are in, because truly, that is all we really can do! I agree with the other posts - having a "To Do" list that does not get accomplished is too much pressure and a set-up for feelings of failure. This study was based on mindfulness and the work of this author linked below, and specifically this book. You might find it helpful, wishing you the best!
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Selena, Such eloquent words. Thank you so much - I needed to read them, and they make perfect sense.
SpecialK, Thank you for the book suggestion! I will purchase the Kindle version today.
Thank you so much for everyone's suggestions. I'm trying to incorporate all of them.
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SlowDeepBreaths,
I just started reading your blog and want to share a possibility with you. My dear friend felt much like you after finishing dose dense radiation after her lumpectomy. She developed a cough that wouldn't go away and was feeling extremely tired, achy, sore and an overall malaise for several weeks. Her husband is a physician and kept hounding her RO that something was wrong...well he was right, she suffered radiation pneumonitis in her left lung, a SE that will not correct itself without treatment. She ended up on steroids and already is feeling so much better. I am not trying to say this is what you have, but if after some time you continue to have your cough and other symptoms I described, I would get checked. I believe a chest Xray is all you need to confirm this, but I'm not 100% certain. My friend's RO was absolutely stubborn and insistent that she did NOT have radiation pneumonitis until the Xray proved it. In fact I believe very few RO's even acknowledge this as a SE but it's a little like breast surgery and its tie to lymphedema...more and more docs are believers.
Just a thought- and please please know I am not telling you this to scare you, only to keep you alerted to possibilities.
Amy
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Slow Deep Breaths,
I was the tower of strength all through the dx, lumpectomy, chemo...half way through rads I fell apart. It was quite embarrassing as it would happen when I saw the RO. My suffer in silence mantra imploded.
That was in Feb, just a few months ago. My PCP talked to me about PTSD & put me on Zoloft, again I was embarrassed that I was not tough enough... Sheesh, I realize how much pressure we put on ourselves to "man up".
I am feeling much better, I try to keep up with the lifestyle I have always had, busy, lots of activity, golf, tennis. It is impossible to do. So, baby steps. More meds are not the answer for everyone. Mine are a short term plan, 9 months to a year.
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This seems to be such a normal thing that there really should be an 'after treatment treatment'.
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slowdeepbreaths
all very good advice - I think the pressure we put on ourselves is the worst enemy. We have been through A LOT - and many of us at a younger age disrupting and wreaking havoc on the most busy time of our lives. I was only 42 when diagnosed, 2 kids (12 and 9 at the time) a big job, travel for work, lots of friends, lots of after school stuff -busy busy busy. Then BAM everything just stops. How can you not be depressed? life as you know it stops and and a new, shitty one full of doctors appts, tests, treatments and side effects takes over. I had a melt down after rads, complete crying ,screaming meltdown, worse then when I was in active treatment. Very NORMAL.
I have since decided to stop mourning the past, that person before cancer doesn't exist anymore. The newer me isn't the one I wanted (or you or anyone else with this rotten disease) but it becomes the new you, the new normal. Yes I have aches and pains and fears and it sucks but every month it gets better -you move forward and do the best you can and you do find new joys and dreams and good stuff!
it will get better!!! ((((hugs))))))
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Ziggy, I think that is so true. I've been through some
traumatic stuff physically and mentally. I had a disease ten years ago that I wasn't
expected to survive. Along with that came many surgeries and an intense
rehabilitation. I was in a hospital bed at home for almost a year. I had such
bad atrophy, I had to learn to walk again. I never suffered the feelings I'm
feeling now. Maybe my problem is I'm trying to compare the two experiences. I
know attitude can play an important role, but I feel like something has changed
- maybe it's chemical. The only thing I have to go on is my past experience. When
we go through these treatments, everything is altered. Maybe it's the fact that
we are forced into menopause while our bodies are trying to heal?? I wish they
had a formal program to address all of the issues. I feel like I could easily follow
a step-by-step guide. It seems like there is more knowledge on these boards
than what our doctors can offer after treatment.Amy, thank you for the information. My MO did have me do a
chest x-ray. I never heard back, so I assume it must have been clear. I am on
the eighth day of my antibiotic and I'm still coughing - mostly when I go to
bed. I will email my RO and ask him about radiation pneumonitis. Honestly, I
was scared that it may be progression. I elected not to have the SNB because it
wouldn't have changed my treatment plan, and I have so many complications from
past surgeries, I didn't want to add lymphedema of my arm to the mix. Also, I
didn't really want to know. My stage 1 diagnosis is from the original core
needle biopsies - before surgery and before treatmentHeleinone, I agree with you completely. I felt pretty strong
until the radiation part of treatment, and then seemed to slowly fall apart -
by the end I feel like I had a total meltdown. Again, I wonder if the chemical
alteration has something to do with how we handle the stress of treatment.rozem, Yes I do agree. However, I'm not new to constant
doctors and surgeries. I guess that is my point - I've always handled all that
very well and I'm stumped by the sudden change. I can certainly see how someone
that has been healthy their whole life, and is hit with this diagnosis has devastating
life changes. But that's been my everyday life which is why I'm questioning the
change. The emotional toll seems so much worse. I think the doctors need to
address the changes so we aren't left to fumble forward with our lives.I'm a pretty even keel person, and I can definitely notice
the change in how I handle stress. I'm also not prone to depression which I
know I'm experiencing now. I guess I should stop trying to find a reason why I
feel the way I feel, and just work on feeling better. Maybe the ladies on these
boards should all get together and write an after treatment guide. I'm trying
everything that you've all suggested and it is helping. I appreciate all the
input. Thank for letting me vent. -
Just ran across this thread. #21 rads today. 10 to go! I bought a book titled, " Picking up the Pieces";
It was written with the help of testimonies of cancer survivors and has some practical exercises to guide you through the "Void".
I think sometimes we worry too much about what others expect of us and we want instant gratification. Be patient, listen to yourself and do what is right for YOU!
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Slow, what is happening is so normal......this is what I think....when you are first diagnosed you are on hyper-drive.....making decisions, doing treatments, which means continual contact with nurses, doctors, medical 'stuff'....and then all of the sudden it is 'good bye, good luck, have a nice life' (not really, but that is how it feels)....and only then do you even have time to think.....and what comes to mind is , "WTF just happened here?????????" So this is what I found (for me, everyone has a different experience/timeline/things that are right for them to do etc.)
* what I had read was that however long you were in active treatment, it will take that long again to feel pretty 'normal' physically...I would say it took me double that amount of time
* mentally, I could not even start to process what had happened for a good year after I was done with treatment....really, I could not think about it deeply, talk about it......just had a long vacation on The River of Denial.....then I was ready to start sorting it out.
* absolutely the whole 'hormones in disarray' thing messes with you physically and mentally
* exercise helps, making fun plans, going out and doing interesting things, helping others.....all that helps you move on....and if you just can't after awhile, then seeing a counselor and/or trying an anti-depressant are smart things to check out.
* it really, really truly does get better with time......and you can MAKE good things come out of it....but be gentle with yourself and know that it is a process.
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Hello, I had surgery, chemo, and rad - finished rad in March 2011. Really grateful for my medical team and others. I do exercise some, and find the next day I need to just sit! Able to push myself, but, really want to rest and ... is it depression, mid life, post cancer tx "stuff"? Are there alternative/herbal approaches?Seems I get discouraged. Tonight I have choir practice, which, I enjoy, but my zest for life is down and believe the "facing death" because of breast cancer may have something to do with it.
Learning that I cannot figure a solution to this de-motivation and appreciate any advice.
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Come over to the 'Lets Post Our Daily Exercise' on the fitness forum. Ladies in all stages of treatment and beyond, we keep each other going....lots of positive motivation over there
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Hi,
I've only just caught up with this thread, I certainly feel for you SlowDeepBreaths. You've already had a lot of good advice and understanding from others, I just wanted to add my bit. What you are feeling is totally, totally understandable. How can we just bounce back and be 'normal' after going through diagnosis and treatment, and then all the fears that come afterwards as you realise that things will never be the same again. Along with the excellent stuff suggested by the ladies above, you might like to take a look at a book that I found on Amazon that was really helpful. It's by a psychologist who's had bc herself, so she knows what she's talking about. The book helped me to feel normal when I couldn't 'get over' breast cancer and was frightened it would come back. Her name is Dr Cordelia Galgut, but it's not written in a doctory way, and the book is called Emotional support through breast cancer. Here's the link on Amazon,
It's in book form or kindle, so do take a look. Hope you find it interesting and if you get it, do let me know what you think.
Just remember that you're not alone in how you feel and that there is no 'right way' to do breast cancer!
Kazey x
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keepthefaith, I guess we do tend to put a lot of pressure on
ourselves - I know I do. Congratulations on having 21 zaps behind you. The book
you suggested isn't available on Kindle. I put it on my list of books to read.
My MO said reading helps with chemo brain. The next time I venture out to the
bookstore, I will pick it up.Ruth, You're always such a good motivator. I really love
that exercise thread. I haven't posted much but I read it every day. All the
women on that thread make me want to get out and run - even though I can't run
- LOL. My daughter got me a FitBit for my birthday, and last night I got it all
hooked up and synced with my laptop. I actually took a little walk today and
logged all my food.out03doors, Maybe read through this thread and incorporate
the suggestions? I'm feeling so much better than when I started this thread.
Even if you don't post on the exercise thread, maybe you can read it when you
get a chance. The ladies there really make you want to get moving.kazey, thanks for the link. As soon as I finish the book I'm
reading, I'll download that one next. I'll let you know what I think of it when
I'm done.SpecialK, I'm about 17% done with the book you recommended. I
have to read slowly to absorb it all. I read a book similar years ago. Unfortunately
with my chemo brain, I can't remember the name. I can see where living in the
present can make a huge difference. I tend to dwell on things from the past
late at night when everyone is asleep. I think this could really make a
difference for me. That's twice now that you've helped me! You gave me the
Herceptin suggestion and that made a big difference. Thank you!I stopped putting so much pressure on myself and just take
it one day at a time. Last night I actually got out of the house and went to a
t-ball game. I'm trying to leave the house everyday for a little while. I'm also
trying to listen to my body too. Thank you to everyone that has responded. You
are all awesome!! -
slowdeepbreaths - I am so glad you are reading the book, and also feel that I have helped you. I can't tell you how many times I have I have found the benefit in focusing on the moment, the hour, the day, and not looking backward to how things were, or too far forward to what tomorrow may bring. Doing this successfully and consistently works better some days than others, but I always double back to how much it helps me.
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Sweet, those running ladies almost make me want to run too....almost, but not quite. Although I did run once this fall: I was out walking, went too far & knew I would never make it home in time to get an egg bake out of the oven before it burned (and I was having company).....so I jogged home to save it.....'Will run for food.'
To me the silver, actually golden, lining of this whole thing is the awesome people I have gotten to know because of it. People from all over the world, whom I would have never met under any other circumstances. Weird how life works sometimes.
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And sometimes you get to meet in person!
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Yes, you do!!!!
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Ruth, It's amazing the things we will do for food!
Spookie, I haven't met anyone yet, but I've heard it's a great experience.
Hope everyone is having a good weekend so far.
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I guess I've met, in person, about 2 dozen of the ladies from BCO. It's been a blast! There are meet up threads going all the time, there should be something in your area. If not, start one yourself! The Tampa group meets for lunch about every 2 months
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Spookie, Wow, you've met a lot of people! They are having one in June that I plan on going to. I'm excited to meet everyone.
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You will have FUN!
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I can't wait!
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