Why was I stronger DURING treatment than I am now?
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Just to say welcome to all new people posting - great to see you and it is reassuring to know there are so many of us as it means we are all normal!! But very upsetting we all need to go through this - I personally think there should be a support package or info leaflet given out so we know it IS normal!
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I went through months with on and off feelings of anhedonia...that is, the inability to feel pleasure. It sounds like a number of people are experiencing that. I felt like I had nothing to look forward to, and lost interest in my usual pleasures & hobbies. I wouldn't quite say I was depressed though; I was content but just didn't really feel excited about anything. On top of that I was experiencing profound fatigue and chemo brain.
Maybe it was a coincidence, and just the passage of time, but I started feeling better after I began a regimen of d-ribose, 5000mg 2x/day, coenzyme q10 100mg 1x/day, and 1000mg ginseng 2x/day. I also got really aggressive about exercise, walking an hour most days, some days 90 minutes (but with one or two days a week of rest). Not speed walking, just plodding along. I still have bad days, but overall, things have improved a lot.
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Thanks for sharing, Cfdr. I do have an appointment coming with a psychiatrist, so that's probably a good thing. Hopefully that'll help to start to finally recover?
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The counselor in the breast cancer program at Duke said that recovery, especially from fatigue, takes a lot longer than the oncologists say it will. I went to him 8 months after treatment because I thought I was losing my mind I was so out of gas all the time. The oncologists just wanted to up my dose of lexapro, but lexapro itself can cause fatigue. Depending on what other issues/medications you have going on, you might ask the therapist if an appointment with a pharmacologist or neurologist is worthwhile. So many of these drugs can have interactions, and many can cause mood issues, or simply fatigue or sleep issues, which themselves can cause mood issues. And of course there's the drugs that suck all the estrogen out of our bodies, which can also cause mood issues. Oncologists are just focused on keeping the cancer out of our bodies; what happens as a result is up to us to figure out.
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CFDR -
'Oncologists are just focused on keeping the cancer out of our bodies; what happens as a result is up to us to figure out.'
Perfect. Well said. Everything on this thread boils down to that one idea, and that is the reality of breast cancer. This concept should be mandatory information for every single person embarking on treatment.
Once the surgeons are done, and the drugs are done, and our estrogen is totally f*cked - the real work begins.
I'm one of those people who was blindsided by emotions and became a basket case. Thankfully it was temporary - though I didn't know it at the time. I just though I was losing my mind. Things are better now, and improving all the time. A few steps forward, a little step back, and then forward. Ultimately forward.
My heart go out to all the ladies who have just recently come on board. Please take care of yourselves. And if it's too hard, search out people who can take care yo you.
Janet
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I miss my estrogen. I miss my hair. I miss my figure.
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^I'll second that ^ I also miss my stable mood. I lost my temper the other day with my family, which is so not like me. Normally, I would just talk it out with them, let them know their behavior isn't acceptable to me. As it turns out, my behavior that day isn't acceptable to me either. I think I cried for about 4 hours afterward, and I'm still not back to myself just yet. I really don't want to up any meds.... I just need to sit tight until I can see the phsyc. *Sigh*
I'm going to look at my vitamin and exercize regime CFDR. I think that could be very helpful in helping the body to heal. I have up'd my protein intake considerably, and notice a bit of a difference from that. Any improvement from the fatigue, I will take.
So well put though, What happens after breast cancer is up to us to figure out.' I really like the pharmacologist idea.
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Ok I don't have a long story, but I agree I was so much stronger during treatment than now. We do what we HAVE to do during that time, like it or not, just to stay alive. Then when all chemo & radiation is done, it's like so long and good luck. Then of course, there are the doctors that although they think they're optimistic, will tell you they know of people with recurrent BC ten or 12 years out. Then just recently my onc's "breast navigator" joyfully tells me once you've recurred, it is considered "incurable" forever. It's a miracle I even force myself out of bed !! Geesh.
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Why oh why do so many oncology staff suffer from foot in mouth syndorme, can they not think of the impact their words might have?
I just need to live 10 years and then the personalised treatments will be mainstream but tillthen I will be the driver of my own journey and far from passive..........
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Hi Everyone,
Looks like this is exactly where I need to be at this point. I received my official diagnosis of Triple Negative breast cancer February 29, 2012. I completed my last chemo treatment 9/24/12 & last radiation treatment 12/31/2012. I am not the same woman I was during my diagnosis, surgery, treatments. I came through all of it much better than I had anticipated and felt like I could conquer the world. Even though I am extremely grateful & thankful for so much, especially to be alive, now that everything is "over" I just can't seem to figure out what's wrong with me. I'm not so sure that I'm depressed. It's kind of like there's this huge void or something and I don't know what to fill it with. I have been trying to eat healthier, get myself into an exercise regimen, & taking supplements because I know it will help but there are just days, quite a few of them, that I lack motivation, feel I have no purpose, and that I'm absolutely useless. How do you go from 100 to zero just like that? And trying to explain it to someone...well...how do you explain something you don't even understand yourself? I've only shared it with my husband & my sister because I just don't think anyone else would understand. I also feel like everyone will be disappointed in me & that they'll think I shouldn't be in this state or frame of mind that I'm in. My husband says I should tell my oncologist but I don't want to tell him because I think he'll just shrug it off.
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Snap - I felt like that too as soon as I finished treatment, think its common, we have been through a hell of a lot and our entire future has been changed in a few words - you have cancer -
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Well you know I was feeling ok having found some support last week but then this afternoon and evening have had the most awful nervousness in my chest, heart pounding and just feeling really sick with nerves and horrible butterflies out of nowhere - not thinking of anything in particular, but just feel soooooo anxious......to the point I could almost cry........is this more PTSD stuff?
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Maybe it's just my nature, but I can't help but feel that there should be a reason or some external circumstances causing me to feel the way I'm feeling or rather how I'm "not" feeling. If I had a reason, then maybe I could work on trying to fix it. But I'm not able to come up w/a reasonable explanation. One would think if ever there was a reason to feel like this, it would have been Feb thru Dec of last year but instead I was this tower of strength not just for myself but for everyone around me. I was not afraid, I was not angry. Some people would think "Why me?", my attitude was "Why not me?" because this is a disease that is no respecter of persons. I had a positive outlook, took more time to stop and smell the roses, was more patient & loving to those around me. Not that I was a horrible person before but I felt the cancer had changed me for the better; that it actually was a blessing in my life. As I said in my earlier post, I'm afraid that everyone will think I've disappointed them if they see me the way I am now and that they'll think I should be the happiest person in the world because I kicked cancer's a$$. Even though I keep telling myself that, trying to convince myself of it, & am trying very hard to believe it, I'm sorry to say that I'm not 100% sure that I have and no one can really guarantee that I have. I think I'm also not only disappointed in myself but angry w/myself as well for feeling the way I'm feeling. Maybe that's the problem, I'm trying to find that "new" "old" me I was just a year ago. I'm too busy looking behind me to move forward. Guess I'll just have to keep reminding myself that this is normal (at least for now) & that "this too shall pass".
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K, I was just searching the forums for TNBC and came across this discussion "26 YEAR SURVIVOR HERE" posted by a "nonijones". Most inspiring & very encouraging. Just proves that it's all a matter of mind over matter. Our mental state has to be just as strong & healthy as our bodies to battle this or any disease.
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Trying to figure out WHY I was feeling/behaving one way or another has been one of the toughest issues to deal with post-treatment. WHY am I so tired? Chemo? Diet? Too much exercise, or not enough? WHY can't I focus or stay motivated? Chemo Brain? Fatigue? Depression? Or have I emerged from this as a different, lazier, person? I don't have any answers, and the questions don't really go away. I'm still figuring out what I *want* my new normal to be, as well as what my body/mind will allow it to be.
When I was first diagnosed, and researching the disease and the road ahead of me, I'd see books and articles about survivorship and think that must be silly...once the treatment is done, I'll be done and just get back to normal. Now I understand why so much is written about survivorship. Maybe in another year, or two or five, I'll have settled into a normal that feels normal. For now, I take it one day at a time, sometimes even one hour at a time. I keep my eyes on where I want to be in terms of work, exercise, housework, etc., but also realize I may not quite get there, or that the destination (especially where work is concerned) may have to change.Chemo changes our bodies on a cellular level, and affects the brain as well. I am coming to believe that one never fully "recovers" from chemo...that it changes us in fundamental ways that we may never fully comprehend.
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Morning Everyone,
cfdr, you covered just about all the bases. All the "whys" and the constantly trying to figure everything out are enough, in themselves, to totally exhaust a person. Some days my head feels like it might explode with all of those "whys" and "thoughts" running around inside it. This is just as much a mental battle as a physical one.
With that in mind, there are some things I've been reminded of this morning that, if you all don't mind, I'd like to share with everyone. Not preaching or anything, just sharing a little food for thought. And please keep in mind that I'm saying these things to & for myself just as much as for anyone else.
First, why are our lives so different now as opposed to before? We say the "cancer" has changed us and the "chemo" has changed us and this is indeed true. But something else has changed us, it's the seeds of fear that have been planted in our minds. When I was first diagnosed w/breast cancer one of the first things I did was research and read everything I possibly could that was available out there. My mindset was "Knowledge is power". I did this with the intention of educating myself as well as my family. I thought if we all were prepared it would take the edge off of some of the fear that came with it and in many ways it did. The thing is, though, that too much knowledge can do just as much harm as good. There is sooo much information out there that it's enough to confuse and scare the beejeezus out of anyone. One thing I'm a firm believer in is "going with your gut" or what some might refer to as listening to that "still small voice within". When our minds are in total chaos, which we all know finding out you have breast cancer will do to a person, it's impossible to hear or know what our "gut" or that "still small voice" is trying to tell us. Our dr's concentrate on ridding our bodies of the cancer but they fail to recognize that our "minds" need healing just as much as our bodies. I believe I read in this thread someone had said "the rest is up to us to figure out for ourselves." Truer words were never spoken.
Another thing that came to mind is that after we've been wrung through the ringer with surgery, chemo, radiation, etc, and finally come out on the other side, we're so focused on what's next or what now that we lose sight of the fact that we're still here and that we still have something to offer & contribute. We may be changed in so many ways, we may not be the same person we were before, we may have limitations but we still have something. Maybe instead of focusing on what we no longer have, we should focus on what we do have left or whatever we have gained and simply just do our very best with what we have. We also need to accept our "new" selves and whatever limitations we may now have. We need to treat ourselves the way we would treat anyone else in our circumstances, with love, kindness, care, gentleness, patience, understanding, compassion.
So after having said these things I'd like to end with these thoughts. I sincerely hope they will be of some help and consolation throughout the day.
We have the choice to not walk in the constant shadow of fear of this disease
"The spirit God gave us does not make us afraid. His spirit is a source of power, love, and self control (2 Timothy 1:7) (ERV)"
We are what we believe we are and have what we believe we have in our hearts.
"As a man/woman thinketh, so he/she is" (Proverbs 23:7)
"Above all else guard your heart, for it is the wellspring of life" (Proverbs 4:23)
Thank you for letting me share and for being able to have a place to come to put all of this in words where it all makes sense instead of being all jumbled up inside my head with no place to go.
Dx 2/29/2012, IDC, 3cm, Stage IIa, Grade 3, 0/10 nodes, ER-/PR-, HER2-Surgery 02/27/2012 Lumpectomy (Right)Surgery 03/20/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 05/04/2012 Adriamycin, TaxolRadiation Therapy 11/15/2012 External
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I think it's cancer that makes the change not chemo - we are forever changed
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I agree with Lily. I did not get chemo, but this ordeal has definitely changed me -- so far, not for the better. However, I do see the seeds of something good growing out of this.
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mimiof6
What a great post. I entirely agree that sometimes too much knowledge is a dangerous thing. Logic, reason, facts and figures sure have there place, but are not everything.
I believe that the 'gut' feeling, the 'small' voice is just as important as knowledge. This is something I have had to learn the hard way. When I met my med team I felt instantly cared for and comfortable. This for me was good enough. I have had very poor medical help in the past, and was repeatedly told there was nothing wrong, when I knew there was. It was an awful experience, it played with my head as much as anything.
I have always lived with uncertainty, anxiousness, pain. fear (mental/physical), loss, from an early age. I don't really feel 'changed' by cancer, just that it has increased the sense of a lack of control in life. I guess we all live with that. Cancer has rather more compounded this than suddenly bringing 'uncertainty' into focus.
Also, I just knew I would get cancer, somehow I just knew.
I feel overall a sense of tiredness/weariness.
I am not suicidal, but on many days I feel that to die would be a relief. I am not frightenend by that........
Sorry, I am down again today.
WS
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WS - not good you feel like that sorry - this is such a tough journey and getting life back seems the hardest almost
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.....I hear everything you are saying ....it's the anxiety and fatigue that's the worst for me....I just want the old me back....have to take a pill if I have to get somewhere away from my comfort zone..WTH...turn down lots of social events now because of either
anxiety or just too tired at the end of the day.....just more comfortable staying home in the evenings now....a good day for me is pain free and worry free. More or less dealt
with the pain, but the anxiety, not so much....the funny thing is is that if I keep busy
between work (teaching) and shopping and exercise (my passions) I can remain worry free...but it's the bloody fatigue from Letrozole that stops those activities from time to time...."catch tweny two"...lol... Not suicidal either but there are days when I just want to stay in bed and stare at the box mindlessly...thank God I decided to defer retirement as there is something to get out of bed for still.0 -
Is it definitely fatigue from letrozole?
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"Simply do our best with what we have" is so true. For a long time I would rest, hoping that I would heal enough to have the energy to do what I need to do, but now I try to have a variety of activities that require more or less energy. So if I can focus but I'm tired, I lie on the sofa with my laptop and work on the family budget. If I have some energy but can't focus mentally, I exercise. If I can't do either very well, I'll clean the kitchen or file papers or something that doesn't require a lot of physical OR mental energy.
One of the toughest things for me is having a husband who is much more energetic than I am. I am also comfortable staying home in the evenings, but DH likes to go out at least a couple times a week. Last night we were out at a party and there were no chairs except for some in a stack in a corner, but my legs were aching and I just grabbed one and sat down. I get out more than I used to, but not as much as he'd like. I'm trying to steer him towards inviting people over more often; I'd rather be home and be able to go straight to bed afterwards even if it means a bit more work up front to cook or clean. He has been so supportive, I want to support him in what he enjoys too...but sometimes it is truly an effort.
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I can see where working could be helpful to some extent. I just don't think I can do it yet. However, if I get an offer for a part-time job, I will give it a try.
SSDI turned me down again, so now we move forward toward going before a judge. I feel like my lawyer might not be getting what the real issue is. The real issue is that I have been barely functional for many years. Fortunately, I guess, I had a government job and managed to stay employed. I kept refusing to give up and go on Social Security Disability. Then this cancer thing put me over the top. I wish I knew the lawyer was focusing properly on the mental health issues. All these cancer doctors are only going to say I am physically able to work. However, it's the bouts of suicidalness and the constant severe anxiety that makes me unable to work. Those are the reasons I had to take early retirement.
Oh well. C'est la vie. I suppose it will all work out the way it is supposed to work out.
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mamglam, did the doc say anything about the anti hormone treatment? I was crying for months, even in the drs office, and they just shook their heads and said "It's the arrimidex". I went off of it, and on to femara, and the crying stopped immediately. Very strange. I'm not a crier. I even made a joke when I got the diagnosis. But the arrimidex does this. Now I'm on aromasin. Not exactly "happy" but not crying in the dr's office.
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I am not doing so good at moment, feeling useless and like I am no help to any of you either.....never seem to say the right thing, damaged my car today as so stressed going to hospital for a test......none of this is ME, where am I, I don´t like the new me........
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I understand Lily, at least I think I do. It is very hard to go through this, but I'm beginning to think there might be a place of peace on the other side of this PTSD. I guess I could probably lose that feeling at any time, but something in me IS shifting. I might be finally getting rid of the "bitch" that showed up with the PTSD. I am hopeful. We shall see.
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Wow Dunesleeper you sound so "tranquil" so so happy for you ....still trying to get there myself, but working on it.
Lily.....just come here and say whatever is on your mind....you can never NOT say the right thing here....don't worry about not being able to help others at the moment....you will someday, just not today.....been where you are....actually chose not to drive my car
for awhile.....couldn't focus on anything other than the fact I had C...please keep coming here, we will all get through this together, just all at different speeds.❤❤❤0 -
Timbuktu,
I am on Tamoxifen and have spoken to my MO about the side effects (bone/joint pain and hot flashes mostly). The doctor feels that the advantage outweigh the risks and therefore, to carry on taking them. I recently had my 1 yr. check up with a mammogram and U/S and thank goodness all results were made available immediately. I would have gone crazy had been asked to wait for a day or two!! All the results were favorable.
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Good morning everyone...I have been reading everyone's posts, but have not replied because I didn't think I had much to say to be helpful in any way. Not that I do now, but I did have some strem of consciousness that I wanted to get out there in case any of it helps anyone out there. I have relied so heavily on this board for the last 10 months, that I feel a lot of gratitude to everyone who posts on here and I hope something I say might resonate with someone out there.
Last week, I went for a check-up with my MO, who I think is great. He walked into the examining room and his first question was, "so, are there ever days when you don't wake up thinking about breast cancer?" My response was, "actually, yes, there are days when I don't think about it until later in the day". He said, "well then, you are on your way. That is where you needed to get, in order to move on with your life." I guess the conversation affirmed for me that what we are all feeling is totally normal and that it gets better over the course of time.
Also last week and by chance, I met the psychosocial counselor for cancer patients at our local hospital, who also happens to be a mom at my kids' school. I wasn't sure what a psychosocial counselor did, but she told me that she works with patients on the emotional aspects of cancer. We had a great conversation about the after-effects of this disease and she, too, acknowledged that survivorship is not an easy road. Again, good to hear.
Then, I met up with a former teacher at my kids' school who had breast cancer 7 years ago. She walked up to me, gave me a hug and said, "are you back?" I didn't really know what she meant so I said "back from where?" and she explained that there is a time when you realize you are back, maybe not exactly the same as you were before, but often, better than before. She added that you still worry about it coming back, but you also realize you can handle anything thrown at you. I loved that and hope you all do, too.
The last encounter made me think about how the whole BC experience has changed me. I've decided that a lot of good came out of it. I'm not pretending that I don't worry about recurrence, because I do...a lot. And I'm not pretending that I don't fret about mammograms and check-ups. However, I think the best thing that came out of BC for me is that it made me realize that I don't have control over as much as I thought I did. In all honesty, I never would have thought I would get BC. It is not in my family, but a lot of other diseases are, so I was pretty sure I didn't have to worry about BC and thought something else would pop up. Clearly, I was wrong. It helped me realize that I can only control so much in my life. And in realizing that, it helped me in my faith life.
Another thing I learned is that I am stronger than I thought I was. I would never have thought I could handle all of the treatment thrown at me, but I did. We all did, and for that, we should be very proud! We are all posting on this board because we are strong and even though our strength diminshed at times after treatment, that strength is still within each of us and we can't forget that.
For those of you who are going through a difficult time right now, I hope that you take some comfort in the fact that what you are going through is totally normal and it will get better over time. And for those who are feeling particularly desperate...please, please keep reaching out to us here or to someone else who can help you through. I was listening to one of my favorite REM songs this morning, "Everybody Hurts", and as those lyrics say, I hope everyone feeling down will "hold on". We are here for you.
Sorry for such a long post...feeling wordy today, I guess.
Rabbit0
