Why was I stronger DURING treatment than I am now?
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wow cfdr, you have no idea how meaningful your post is to me. While I'm sorry that you have to go through this, your description of what I feel is so perfect. I have not been able to put it into words so well. And I keep thinking that if I just discipline myself better I can make it go away. I feel like such a slug! I don't want to indulge this feeling, I want to overcome it. I don't want to be a malingerer.
But it's real!
I don't work but I volunteer two days a week and I take classes in the great books one day a week but with 200 pages of reading! It is torture to read when you have no memory. I can't remember what I've read a few pages before and how do you make meaning out of that? These classes were the joy of my life. My friends beg me to come back and I want to prove that I can do it. It's hard to explain to people that you're not the same. They say things like "oh, I forget too" or "you can't use chemo brain as an excuse for very much longer". They just don't understand. I don't understand myself. I'm only good for about 3 hours a day. They want to do other things, go out to dinner, etc. I'm been pushing and pushing to the point where the aches are so bad I cannot walk. I want to live! But I just wrote them that I probably won't be joining them next session. It's too hard.
My surgeon told me after 3 months that I should be back to normal and excercizing etc. But when I called Sloan they said it takes a year to begin to feel normal. The poison actually stays in your body. Only after a year will you feel real improvement. I read study that said that a year after chemo the brain is still shrunken. I feel it!
Anyway, thank you for putting your experience out there, you have helped me to accept it.
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Janet: Love the idea of the sofa as support system. It certainly is for me!
Timbuktu: I've read things all over the map about how long the side fx supposedly last. I talked to a friend over the weekend whose son went through chemo 5 years ago for Hodgkins lymphoma, and although he's more or less back to normal, he's still exhausted at the end of every day. I think it's very individual how this affects us...just like one person can take ibuprofen all the time, and another takes two and has a terrible upset stomach. Telling us how we "should" be at this point or that is not that helpful.
Melmcbee: Good luck on your return to work. FWIW, I'm on antidepressants (low dose of lexapro) and I'm still foggy and fatigued. In fact, lexapro can cause tiredness so it could even be part of the problem.
I landed a contract to design a website, that kicks off today and needs to be done in a couple of weeks. I also have a number of PT and other medical appointments during that time...I may postpone a couple of them. I really need the money, but I'm also a bit nervous about being able to stay focused. I already told my DH not to rely on me for cooking dinner for the next couple of weeks....I need to focus my energy on this project and work into the evening if I can't get my work done in the daytime because I'm spending 2 hours in PT.
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Cfdr -
I went back to work a month after raditation. I was hungry to get back into a life that didn't involve cancer, and I wanted to make some money. Nobody pushed me to go back - my partner Jim would have been happy to have me at home - but I needed to do something.
In retrospect, it was too soon. I'm a freelancer, and I work outside the office - so it meant jumping back in with both feet. I look back at how I was feeling, and I think I was more fragile than I cared to admit. I fell into bed every night. If I were to do it again I would have surrendered myself more to the process of recovering. I should probably have waited, and allowed myself the luxury of healing and spending my time on my beloved couch.
I managed to complete the contract but I wasn't fully operational. Like you, and most of us, I dind't have the ability to focus. I'd get easily distracted, or sidetracked. (As a matter of fact I'm at work right now - and I seem to be the only one not acutally working).
What I'm saying is that you need to honour to your body. It's your responsibility to heal - so don't let impatience or expectations stand in the way of listening to yourself.
Get that DH cooking! And take care,
Janet
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I had my neurology appointment today at the Memory Disorders Clinic (!) for an evaluation for ongoing fatigue & fog. I suppose I should be glad: the neurologist said I'm "perfectly normal", and that what I'm experiencing is simply the result of the chemo (combined with my pernicious anemia), and that I should keep doing what I'm doing: staying active physically, mentally, and socially. He didn't think there was any follow-up needed to see if my sleep apnea has worsened or could be contributing. He didn't think I'm depressed or suggest a change in antidepressant, but said I could taper off the lexapro if I wanted to try going without it. I should limit alcohol to no more than 2 drinks. And come back in 6 months.
A week or so ago I was in tears on my husband's shoulder, saying that I couldn't wait for this appointment because I just want them to fix me. But this was sort of like yeah, you're broken, but that's not unusual considering, but overall you're not that broken.
I didn't feel very listened to...he ran through a standard neuro test (touch your nose, etc) and a brief verbal memory test (what year is it?). No attention or focus testing. And he didn't really ask, or let me talk, much about what I'm experiencing. I've done better self-diagnosis just surfing the web.
I guess I should be glad...but I came home and laid down and have been unable to focus on my work all afternoon. I really, really wanted a magic bullet. I guess time and patience are all I have, though.
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cfdr, we were diagnosed around the same time and I don't feel "normal" either. I'm not even sure I remember what "normal" feels like.
I think we know what we're going through. I remember when my husband had a concussion. He had an mri that looked normal, he had neurological tests what were almost normal, but he had headaches every day and seemed to age 10 years overnight. Not everything can be measured. That was 15 years ago and time has taken care of the headaches. And honestly I don't think either of us knows what he was like before. But this is the new normal and we're used to it.
I think of us as old cars with dings and dents but still running. lol
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I feel like after this appointment I need a major change in attitude. Up until now I have thought that I would "get better" any day now, and have tried keeping diaries to see what might be affecting the fog/fatigue, but I have not been able to find any correlations...except perhaps that mental activity actually seems to be more tiring than physical activity.
What I'm trying to do now is accept my "new normal" as a long-term normal, not something that's going to get better next week or next month. Every time in the last year+, if I had a few good days in a row I'd pronounce that I was past the fatigue, only to have it return with a vengeance.
So now if I need to lie on the sofa or sleep for 10 hours I need to lose the guilt/shame/frustration that I feel when I do so. I'm lucky that I'm alive with a low chance of recurrence, and that I'm not having the joint pain that has plagued so many on letrozole. I'm lucky that I have a supportive husband who has been understanding, even encouraging, when I just need to rest yet again. I need to stop focusing on fixing myself, and focus on doing what I can do when I can do it.
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Boy are we in the same boat! I literally just wrote almost the exact same thing to a friend, just now! You have to come to terms with your limitations and accept them.
My onco said that it will take a year to even begin to feel normal. She said that the poison actually stays in your body that long! March 15 is one year since my last infusion. But of course it won't all happen at once. she also said that chemo brain improves seasonally. Not monthly. But every few months I should see an improvement. So far I think that's true. Every now and then I'm surprised by how my brain will actually work! lol
I have a few good hours a day and with luck that will lengthen over time. It's good to talk to someone who is on a similar time table. It seems like such a long haul!
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Okay ladies so here is my "good thing about chemo brain" example. I had someone send me a PM to ask me about my chemo dosage increase and why my doctors recommended some of the things they did, etc. When I was reading her message, I was thinking... increased chemo... what the heck is she talking about? :-) I had to look at some old posts of mine to have a clue as to what she was referring to. The memories fade and things change.
I'm not going to say that we are ever going to be our old selves. We will not. When anyone has an experience like we have, it's a life altering situation. Therefore, our lives are altered. Our bodies are different, our minds are different. That doesn't me we are worse for the wear. In fact, some of us would never allow ourselves time to relax and now we sometimes have no choice. That's not a bad thing. Some of us can now have empathy with others as we know how pain and fatigue feel. We will always have our ups and downs and eventually life gets meaningful again. There is always something good coming and when it happens, we will appreciate it even more.
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I so agree with everything you say. I hope I also have learned to say no, to stick up for myself, to take charge of my life. I feel very different.
Today a friend took me out to lunch. We went to the bathroom and when i came out a sat down in the booth.
There were new forks and knives wrapped in clean napkins and I thought "why did they bring us new knives?"
to the side were 3 waiters looking at me with smiles. I looked for the water and bread and they weren't there. I just sat there puzzled for a couple of minutes and then looked up and saw that our booth was one in front. I got up and switched booths and the waiters stifled their chuckles.
It's hard to describe this to my friends. They all say "oh yes, i forget too". They think they are being kind and understanding but that just shows that they don't understand at all.
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My son still teases me about the evening where I opened our pantry door (directly next to the refrigerator) and looked in and said, "Damn, the light's out... another thing to fix around this house." Then I realized I wasn't looking in the frig. :-)
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Good one! It's nice to be understood.
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I'm really struggling this week. I'm a 13 months out from dx and I still just drag. I don't sleep, even when I have the oportunity. I have a heck of a time motivating myself to do anything at home. I go to work, do my job, and come home and just sit and let the TV play. I can't say I watch TV because I really don't. The weekends go by in a flash, with nothing getting done, but no fun had either. I can't remember the last thing I did, just because it would be fun and I really wanted to do it. I can't even think of anything "fun" I want to do. Oh maybe go somewhere where the weather is nice, and just sleep there.
I did think I'd buy the new Sim City and maybe get back to playing that. It used to be fun. But the new Sim City is apparently a bust so...
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Cindyl, I can relate. I used to be very self-motivated and self-disciplined, and now I'm neither. In some ways it's worse when I do feel motivated, because having the motivation but not the energy is frustrating. I also went through a time when I could not think of anything that would be fun...all I wanted to do was rest. It's gotten a bit better with time (I'm also about 13 months out) but whereas I want to measure progress is days or weeks or months, any progress is more in seasons...or years.
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Yeah. Even simple things. A friend of mine and I went to the play Les Miserables years ago, and loved it. We've been waiting for the movie for years. Now, when It finally came out, it was all I could do to drag myself to the movie, and I only did it because my friend was so excited. I was just meh.
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I'm ten months out of treatment, and feel like I should be back to normal, but at the end of the day, I have nothing left. I walk my dog and go to sleep. Occasionally I get a burst of energy and go out after work in the evenings, but I'm feeling remarkably sluggish.
Mentally too. I was going over my Visa statement, and there was an $800 charge at a building supply compnay, that I thought was fraudulent. So I managed to have the money returned to me. Then of course, I remembered that I did actually spend that money, and I had to call them back.
I just want to sleep! I was hoping this was just the end-of-winter blues but I just don't know anymore. I'm tired of being tired.
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Janet and all: It has been 13 months out of treatment for me and I’m tired of being tired too. I know exactly what you mean. Mornings…. it is so hard to get up and moving. I can’t remember what it feels like to feel “rested”. I feel angry lately that this “period” of healing was never discussed. I was not told that after treatment you won’t feel like you did the day you were diagnosed. You will never feel like that again. We are NOT told that side effects from surgery and/or chemo and/or radiation and/or medication will linger for years to come. The fatigue, joint pain, delayed emotions, itchiness, dry skin, weight gain, etc…. are things perhaps we may have to accept for the rest of our time on planet earth. There were just a crapload of pink ribbons flying around and posters with extremely gleeful “survivors” everywhere.
Maybe I’m paranoid, but are people starting to avoid the new negative pissed-off me? Or am I avoiding people….hmmm the latter sounds about right. My ONC said to me, “I really hope you are one of the ones that make it”. When I looked at her with a surprised expression, she said, “no, not simply “live” but have a strong desire to live with peace, acceptance and taking good care of yourself. Some people lose their jobs, friendships, family. What can do to help you not be one those folks?” Yikes.
I have to remember to take three deep slow breaths at the start of each day and think of something I’m grateful for. I’m grateful for you Janet_M; you have given me some awesome feedback and support when I needed it. Thank you.
May I recommend a great blog? www.thesilverpen.com . Hollye Jacobs started it when she was diagnosed with breast cancer which she has termed FBC (f**ing breast cancer). It has some great information and was voted in the top 100 blogs for women recently.
Hugs to everyone. A few big ones!
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Janet and all: It has been 13 months out of treatment for me and I’m tired of being tired too. I know exactly what you mean. Mornings…. it is so hard to get up and moving. I can’t remember what it feels like to feel “rested”. I feel angry lately that this “period” of healing was never discussed. I was not told that after treatment you won’t feel like you did the day you were diagnosed. You will never feel like that again. We are NOT told that side effects from surgery and/or chemo and/or radiation and/or medication will linger for years to come. The fatigue, joint pain, delayed emotions, itchiness, dry skin, weight gain, etc…. are things perhaps we may have to accept for the rest of our time on planet earth. There were just a crapload of pink ribbons flying around and posters with extremely gleeful “survivors” everywhere.
Maybe I’m paranoid, but are people starting to avoid the new negative pissed-off me? Or am I avoiding people….hmmm the latter sounds about right. My ONC said to me, “I really hope you are one of the ones that make it”. When I looked at her with a surprised expression, she said, “no, not simply “live” but have a strong desire to live with peace, acceptance and taking good care of yourself. Some people lose their jobs, friendships, family. What can I do to help you not be one those folks?” ~~ Yikes.
I have to remember to take three deep slow breaths at the start of each day and think of something I’m grateful for. I’m grateful for you Janet_M; you have given me some awesome feedback and support when I needed it. Thank you.
May I recommend a great blog? www.thesilverpen.com . Hollye Jacobs started it when she was diagnosed with breast cancer which she has termed FBC (f**ing breast cancer). It has some great information and was voted in the top 100 blogs for women recently.
Hugs to everyone. A few big ones!
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Hello Ladies,
It seems to me that we are experiencing similar emotions!! I too, completed my Radiation treatment 11 months ago and emotionally, do not have the strength or the patience to deal with daily things. I have had a series of infections in my breast and have been on antibiotics for 2 weeks and will be on them for another 2. This infection has been taking all my strength to fight and seem to have no energy left for anything else. I too, am tired of being tired!
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Me too but been feeling a bit better since taking strong vitamins....don´t have that same hangover fatiguey feeling as much now
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i started a gratitude journal. I try to write 3 things I'm grateful for every day and it really does help.
It doesn't give me energy, however!
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I find I am good with diet etc for a while but then have a total binge and avoid vegetables......then feel guilty......problem is i just dont feel like eating stuff on the diet.........
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Me too feeling like this. No energy, no motivation to get the simplest things done.
Purl51 - That's an interesting thing for your onc to say: it suggests there are a lot of people who really are never the same. Those who continue to suffer emotionally.
I have a feeling that is going to be me.
I don't know how to get out of this state of mind. why am I not celebrating as a 'survivor?'
I finished rads only in November 12 - maybe that's why? -
Oh deary me.
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In the book "Breast Cancer for Dummies" the authors do say that many women report never feeling the same after chemo. I read this before chemo yet still opted for it. I guess these complaints are sort of a luxury. When cancer is facing us we can't think of much else. Once we've done it all, we can focus on the side effects. If given the choice, cancer or low energy, I guess we'd choose low energy. March 15 is the anniversary of my last infusion and I have to plan something to celebrate. When you get a diagnosis, you don't know that you will have a year. i think we'll all improve in time, at least I hope so. But most important is to have the time!
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Wintersocks -
Novemember wasn't that long ago! Of course you're tired. Also - you've been stuck in a pretty stressful situation with the ex-hubby (pr*ck) making you sell the house. If you're not feeling like kicking up your heels, there's good reason. But I think you have the potential to celebrate being a survivor - it'll come. Sometimes you have to force it, and be the one to host the party, but it will happen.
But I agree that Purl's Oncologist's comment was interesting. I've always been lead to believe that 'making it' is the rule, not the exception. I have two friends that preceded me with BC , (both in their 40's) who are a few years out, and are doing great. And I've just assumed that my path will lead me to somewhere peaceful too.
Sounds like a whole bunch of us are somewhere around the year mark. Hopefully we're still in transition and there are calmer, happier, and more restful times to come.
Here's my current peeve. My head feels very clear, but sometimes when I say something I use the wrong words. My partner (Jim) correct's me. Clearly he understands my point - so why bother with the correction? It's really tempting to kick him in the head. If only he knew how hard I've work over the last 18 months to keep up with the pack. Damn
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Hi janetm,
How amazing and lovely you remember my story! Yes, the house is now up for sale (as my ex wanted). And I am moving (with my 15yr old) this weekend. The house will be empty here. My ex could not believe that I was moving out, he thought he was being generous and at least should wait until it was sold.... quote: ' I am not responsible for your stupid decision making'. I am feeling anxious I can't deny it. But sure is for the best.
Yes, I think there are a lot of us around the year mark it still feels like one foot in treatment and one foot out. I know that you like me are waiting for the recon; but I believe I read it had been put bacK, is that correct?
I know exactly what you mean about selecting the wrong word! I do that too; or I can't capture the right word,. It can be frustrating and annoying.
I wonder why Jim feels the need to correct you? It's interesting that.
By the way ladies, I am fretting a bit; I have a very small spot thing on that stretchy bit just before the underarm starts; it's on my mx side......what is it?? groan. Has been there about 3 weeks.
Also, had very bad cold for 3 weeks. It has largely gone but I am left with a very irritating cough. This is after flu at xmas too.
Do others run off to onc or BCN?? Or just wait a bit? - I don't think I can face it as still waiting for ovary scan and gynae/bowel consult. - It's too much
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So glad that I found this thread. I didn't have chemo, so I can't blame my fogginess and fatigue on that, but I just thought I'd feel so much better by now. I doubt the tamoxifen is helping my mood much either. I need to focus on getting back into life, finding a decent job, and all I want to do is curl up and go to sleep. Yes, this disease turned my life upside down. Yes, it made permanent changes to the physical me. Now I realize there might be permanent psychological changes I had no idea were a possibility. I need the attitude adjustment of the century! Anyway, glad I found this, I don't feel like I'm just making a mountain out of a molehill.
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Just before my one year after diagnosis mammo I felt a huge lump in my breast and rushed to the dr.
I think the anniversary freaked me out. I was petrified of the mammo. I couldn't wait for my app which was in a couple of more weeks. Turned out it was nothing. Actually, it was my breast! Breasts are lumpy! lol
It was reassuring. But I think we've been through a trauma and it's natural to have a bit of post traumatic stress disorder.
And if there are other stresses (and when aren't there?) it has to magnify everything.
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Purl - Thanks for the blog link. I skimmed it, and it look great. I've bookmarked it for my bedtime reading. I also have a blog - and in the same manner, it started as an outlet for being bald and crazy, but I ended up finding silver linings and special moments. Still crazy, but grateful. In a shamless act of self promotion, I've included the link with my signature.
Wintersocks - I hate being corrected. I have to remind myself that for every time Jim corrects me, he's probably let another dozen things slide. I just really try, you know? But sometimes I just want to leave the milk in the cupboard, and drive on the wrong side of the road, and kiss my dog on the lips.
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Reading the book Dancing in Limbo helped me as it shows that what we are going through is totally normal - I feel a bit cheated that no one told me about this stage of recovery as it is well known and well documented so why don´t doctors tell us so we can be prepared instead of hitting lows and trying to crawl back out! I am still up and down like a yo yo, even typing this now i am holding tears back yet last week I felt ok ish......it is emotionally exhausting...
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From what I understand from long-term survivors, it does get better. Apparently, the going is just really slow, and of course, we want/expect it to come more quickly.
I just got out of the luney bin. I had a total nervous breakdown, and I'm pretty much exactly at one year from mastectomy. I did not do chemo or radiation, so none of my mood stuff comes from that. However, I have the same feelings as you describe. I totally alienated everyone around me, and as each new person disappeared from my life I became more bitter, anxious, and depressed until the last straw was reached last week and I broke.
I suggest finding a therapist you can talk to, and do that for 6 months or so. It will help you learn coping skills and feel that someone is listening to you.
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