Why was I stronger DURING treatment than I am now?
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Thanks Lenn13ka
It really has been helpful to hear from you and also read through your post and see that this is not something I alone am going through.
I even had my husband read the article Wintersocks posted because I felt it might help him better understand what I am going through. So many people get so excited and want to help celebrate the end of treatment and it all being behind me - which I know is a good place they are coming from but I just want to scream I am terrified. That I don't feel like anything is over I just feel like I am out here now alone and no longer know who the hell I am or what is next.
I am going tomorrow morning for the last herceptin infusion and decided to take some positive actions and celebrate all the amazing people, nurses, doctors, nurses assistants, the volunteers the women who checked me in and scheduled my appointments - all of them. I am getting a big basket of goodies from a wonderful breakfast spot and then a huge bouquet of flowers that they can all share. I know I will ball my eyes out when I say good-bye to everyone but I want to let them all know how much they became my family and my support team this past year and that I am so glad they will be there for the next person about to embark on this.
Thanks again ladies. You are all so, so helpful.
Julieho
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Julieho...woo hoo for your last herceptin infusion! That is great news. I think celebrating your caregivers is a fabulous idea. I am sure they will appreciate such a thoughtful gesture. The tears flowed on my last official day of treatment. It's very emotional. Hang in there. There's nothing wrong with gratitude and showing it through some tears is o.k.
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Talk about chemo brain...I'm reading everyone's posts thinking "What article did wintersocks post?? I don't remember any articles". Went back, realized I downloaded it and never read it. Doh!
My husband and I went for a walk last night and talked about my progress, or lack of thereof. His (non-chemo-brain) memory was that I had done much better in the months immediately after chemo, and that it was later that I really started having issues with fatigue. I reminded him that for the first month after chemo, I had pneumonia. And that for more than a year after, I was sleeping 9-11 hours a day. But I didn't really start to complain until the fatigue dragged on and on and the doctors all thought I should feel better by now.
But in looking back like that, I realize that things *have* improved. I'm working more hours. I'm getting out more socially. I'm having uncomfortable, often painful intercourse (which is an improvement over none at all). I'm taking an art class. Some nights I sleep fewer than 8 hours and am still able to function the next day.
Compared to my "old normal", things are still pretty sucky. There are days when my mind is dull as a rusty bread knife. Days when I move like I'm 90 years old. But I remind myself that this month is an improvement over September 2012, which is a vast improvement over September 2011, when I couldn't even wear a shirt because of the radiation burns. So when the despair and impatience and anxiety hit, I remind myself that I will probably be in even better shape in September 2014.
As Rockym's Dad so wisely said, this too shall pass. :-)
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So true. I called my dr about 6 months after I'd finished chemo and told her of all of my problems. She said "6 months? that's no time at all for recovery from chemo! The stuff stays in you for a year!" Some other dr had told me I'd be ok in 3 months! So that entire first year is a write off. Recovery really begins after that year. And yes, the progress is there, if slow. My onco told me to think seasonally, not monthly. The chemo brain improves every season. It's hard to be patient. After struggling to survive, you don't want to just survive but LIVE!
It's great that your husband walked and talked with you. You have to know each other again. And of course he doesn't remember, mine doesn't either.
Someone just sent me something on facebook. "you can close your eyes to what you don't want to see but you can't close your heart to what you don't want to feel". I thought that summed it up so nicely. And I can't believe I remembered it!
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BTW, I had to go back and look for wintersocks link too!
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I had tea yesterday with a friend who is just wrapping up her treatment. She is not having issues with fatigue but is having a terrible time with pain and muscle weakness. She said one of the most difficult things for her is that her recovery is not linear...she will be fine for a week and think it's all behind her, and then WHAM it's back.
That's what's been difficult for me, too...the inconsistency. Yesterday I got out of my art class and felt like I could hike 10 miles. By 4:30pm I was on the sofa. Today my brain is a fog, and sitting up in a chair seems like too much work. And then I drive myself crazy...what did I do? What did I change? Did I eat too much sugar yesterday? Not enough protein? Did I walk too fast last night? Or did I not walk enough?
Even though things are slowly improving, part of me wants to pull a chunk of money out of my retirement and take six months off...just forget about trying to function at all and just go with the flow of my energy level. But I also think that striving to keep productive keeps me sane as much as it drives me nuts. And that last sentence just shows how nuts I've become!
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Oh am I laughing! You said it! Last night I was explaining to my husband how this go round with anastrozole has my ankles killing me. Something new. But I keep thinking "Maybe it's my shoes? I must remember never to wear those shoes again!" He knows I have to excercize so he says "Do you think you can walk to the mall tomorrow? (1 mile). I told him, "If I knew how I will feel tomorrow and what I can do tomorrow, I would not have a problem!" I do feel better today. And I WON'T wear those shoes when I go for my walk!!!
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Hi everyone,
I really love this discussion group. It really helps me not feel so crazy. I had the last herceptin today and I was emotional but I was also okay. And, my doc, nurse and some of the oncology nurses who weren't in my bay came by to see me and chat and reminded me that I will be coming back for "check-ups" and of course I can visit them all. Which honestly I think I will do. They are truly a great group of people.
I even sent my nurse the article wintersocks posted because she was attending a conference about "the end of treatment" and I told her how good it was.
So I am going to check in here most days and realize that you are right - recovery is not linear, which is crazy making at times. But, there are days I feel good, almost myself or closer too it and then days I feel so completely out of touch with who I am, not motivated, tired, trouble focusing, etc and these seem to come and go for no apparent reason - other than four surgeries, four months of chemo, one year of herceptin and probably around 6 months total of antibiotics. Oh, and the fun of being thrown into menopause. So, I guess that will have to suffice as the "reason".
Thanks again everyone for being there.
Julieho
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My goodness! You have been through the mill! But it's all onward and upward from now. Congrats! You are on your way!
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Here's my story -- I was so focused on staying strong and positive during my treatments that I didn't really like spending too much time looking at these message boards. I would look for the information I needed, then I'd get out. I'm nine months done now (I've been through 3 operations, chemo, radiation, and herceptin), and I've been upset because I've been tired for no reason I can think of. This kind of tiredness reminds me of how I felt during chemo, and it's just upsetting to me--so much so that I'm now back to reading these message boards! CFDR, your post about fatigue and inconsistency was very helpful to me, so thanks!
I think that sometimes we are so strong during the treaments that when it's over, and we start to exhale ... and that's when it hits! I still can't quite believe what I've been through.
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Just-Susan, welcome. Fatigue has been my biggest complaint post-treatment. But I also have to laugh knowingly at julieho's comment:
But, there are days I feel good, almost myself or closer too it and then days I feel so completely out of touch with who I am, not motivated, tired, trouble focusing, etc and these seem to come and go for no apparent reason - other than four surgeries, four months of chemo, one year of herceptin and probably around 6 months total of antibiotics. Oh, and the fun of being thrown into menopause. So, I guess that will have to suffice as the "reason".
I drive myself nuts looking for the "reason", that one magical thing that I can do or not do that will guarantee that I feel better tomorrow. For instance, I'm off all alcohol for a month, even though I know from past experience it has made NO difference. Sure enough, no booze/wine/beer for 11 days now, and it hasn't made a darn bit of difference. This weekend I'm going to start a week of no meat/eggs/dairy/gluten/sugar in addition to the no alcohol...just to see if it makes any difference. I figure either (a) I'll discover a miraculous cure, or (b) I'll realize that the way I feel has nothing to do with my diet and just eat healthy and forget about it.
Timbuktu, what you said to your husband is right on. How will I feel tomorrow? Most people can answer that with a relative degree of certainty. For instance, if my husband gets a good night's sleep he's pretty much guaranteed to feel fine the next day. Unless he gets the flu or food poisoning or pulls a muscle, his activities are not hindered. So when he asks me something like "Do you want to go to this concert in 3 weeks?" I really don't know how to respond. Because when the concert rolls around, I may be excited to go, or I may not want to get up off the sofa.
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Thanks, cfdr. I realize now that, post treatments, I had set a lot of goals for myself--I didn't want to dwell on what I had been through, and I wanted to appreciate my second chance at life and get things done. Now I'm thinking that I've been pushing myself too hard. I'm tired, and sometimes I can't shake off the memories of what I've been through.
So maybe I need to take a breather, and allow myself to reflect. How do you guys find that balance between reflecting on what you've been through and yet not dwelling on it and moving forward?
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Just-Susan, the reflection comes a little each day. Sometimes these is no need to reflect anymore. That's probably when the real moving on starts. I have to say that sometimes the only reason BC comes up in my head is because I still come here and check in on my friends or laugh (on-line) with some of the ladies I have now know for a couple of years.
Eventually many of us get to be at peace and the balance comes from having other interests. Not to bash anyone, but when I see someone on these boards with 20,000 posts... well, that tells me that BC must be their whole life. I'm not talking about a Stage IV lady either where BC could be a lot of their life. I like to garden, bike ride, hang out with friends, shop, take care of my kids, housework, homework... I could go on. I also look for the silver lining in bad situations so it turns each effed up experience into something more positive. You wouldn't think good things could come of BC, but they do.
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[Surreptiously checks number of posts after Rockym's comment. Under 400. PHEW.]
I've realized that I've also put pressure on myself because of the "second chance at life" deal. That's part of the motivation behind my taking art classes. I feel like I should be out enjoying life or doing fabulous things, not lying on the sofa. I don't dwell on the past experience so much as I struggle against the current reality of not having enough energy.
But then I have a day like today. Worked a few hours in the morning, drove my husband to the airport, stopped at Costco and the grocery store. By the time I had a bite to eat it was pushing 2pm. I realized that I had zero motivation to go back to work. And I faced the fact that what I really, really, wanted to do was lie on the sofa.
So I turned on my phone, played a game of sudoku, and then turned on a podcast of This American Life. I lay there for about 40 minutes just letting Ira tell me stories.
I can't do that every day. Maybe not even every week. But sometimes I just get tired of swimming upstream through molasses all day and want to just float downstream.
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I was reading this memoir called The Dog Lived (And So Will I), about a woman whose dog gets cancer, and then she gets bc. It's got a lot of humor, so I thought I would enjoy it, but when she started writing about her own experiences with biopsy, MRI, waitng around for the next phase, etc. etc. ... I put the book down. I don't want to go there! I guess that's why I never posted much on here when I was going through treatements; I couldn't deal with everyone else's emotions as well as my own. But maybe some of you would like that book.
It's so hard to figure out how to pace yourself, isn't it? When I was in chemo, my friend who was a year done with treatments kept telling me to exercise regularly and to keep living my life normally, but at the same time she kept telling me to take it easy, pamper myself. I found it really hard to find that balance. I didn't think that, post treatment, I'm still trying to figure this out.
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Hi all,
I don't post a lot but reading your posts help so much. I could be writing most all of them. When I was first dx I was so "upbeat" about that my Onc grinned at me. Guess he knew what was coming. It helps so much to know I'm not being really weird. Having good days and bad days.
The thing is we are all strong. Incredibly strong. We have all been through so much and have come through the other side. We all deserve many hugs and pats on the back. I'm off to give some to myself now. Hope you do too.
Hugs,
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Hello to all the new ladies and welcome.
Cfdr...I laughed out loud when I read the beginning of your post because I had just checked to see how many times I have posted. I was relieved, too. Just giving you a hard time, Rocky. I totally get what you meant in your post.
Just Susan...you said it...we are strong during treatment and after it's over is when it hits us hard. No one told me that so it came as a big surprise, but that's definitely when the real work starts. Finding the balance betweeen moving on and not dwelling on the past is difficult, particularly in the early days after treatment, but as time passes, it gets easier. One day you will wake up and not think about BC right off the bat. It's those little victories that help. There was, and still is, a part of me that wants to remember how I felt early on after I was diagnosed...I really took time to smell the flowers, play with my kids and not sweat the small stuff. Now I am back to sweating the small stuff and often need to remind myself that those things don't matter. But I also realize that is a small sign of moving on. Rocky is right, some good things come out of this experience and that is helpful to realize, but it takes time to get to that point. The do things/rest balance is tricky but you will find it. Just give yourself some time.
cfdr...just sayin'...you had a pretty full day before 2pm yesterday. I'd be tired, too!
Deb-in-LA...loved your post. You are right, we are all strong and we are still here (flipping BC the bird)!
On another note, is anyone else dreading the month of October like I am? I fully support awareness and funding for research, but find October a tough month because every time I turn around, there's something with a pink ribbon on it. Am I alone in this feeling? I don't mean to be a downer on it, but it is everywhere.
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Hi everyone,
Okay I think I am now finding that this is a very important part of my day - checking in on this board. I just find it so helpful to know that there is a recovery process, emotionally, physically and spiritually to "being in recovery" and done with treatments.
I woke up with the same stiffness I usually have post herceptin, my fingers don't bend easily and I walk like a hundred year old man until my body lossens up some. It has been really grey, cold damp weather here in Vermont and everytime I lie in my bed, which I am lucky enough to have facing the mountains and a beautiful view I am reminded of last fall and the start of chemo and spending so much time in this bed just looking out at the view and trying desperately to see the beauty in it but feeling so overwhelmed by my own pain and discomfort.
Someone told me that BC can have a PTSD effect. I often feel that. It is like I will be doing something and a flash of a painful experience from last year will overwhelm me. I think it is the unpredicability of all these emotions that are so hard. I so agree with cfdr that it is SO hard to make plans because I just don't know how I will feel later today let alone next week.
I am leaving this Thursday for LA to spend several weeks with my daughter who is having our first grandchild and I am so scared that I won't be as present and as helpful as I so want to be. I feel like on the one hand this is a huge opportunity for me to sort of get out of my space and have a wonderful and fun distraction. I LOVED having babies and LOVED caring for infants but I also know that there are a lot of demands and I need to not be one of them but be present and helpful to her and her husband.
I wasn't going to bring my computer because I sort of thought I can check my email and facebook on my phone and just leave that behind but I realized I need to stay in touch with all of you so I am packing it up with me.
Thanks everyone for your post, your honesty and your encouragement. It is such a strange walk we are on. I posted a pic of my husband with me at my last herceptin treatment on Facebook the other day and thanked him because he has been such a rock and so much help throughout this past year. I got so many people writing how incredible they thought I was, or both of us were, and how strong and with how much grace and humour we went through this and I felt like "who are they talking about". They have no idea what a train wreck I am. That I haven't any idea anymore what to do each day, that most days I want to just pull the covers up over my head, curl up with my five dogs (like I did most of the time during chemo) and just sleep the day away.
I know that I am both of these things - that I did face the treatment with a degree of grace and strength, I tried hard to keep a sense of humour and get myself going when I could, etc. but, like most of us I kept the pain, depression and sadness away from everyone as much as possible.
It feels good to have a safe place to just say how hard this feels. That I so want to wake up and feel like, wow today I am done treatment, today, at least for today - my cancer is gone and I am living my life. But, these thoughts so quickly get drowned out by this by the anxiety I wake up to most days, a feeling of breathlessness, nausea and fatigue.
Anyway, I am grateful to hear from all of you and finally figure out how to use these boards and connect with other women who are going through similar feelings.
Thanks everyone!
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At the risk of adding ANOTHER post....I have to say that I don't think much about the bc treatment. It's the NOW that is driving me crazy. The side effects from the anastrozole are debilitating. So every day is a struggle. If I felt well now, I think things would fall into place. I'd love to live as if it never happened. Instead, I go through life saying "ouch" with every step and wondering how I will get through over 3 more years of this.
My relationship problems are straightening out fabulously with therapy, I think that's the key to my happiness. it's only the physical problems that remain,
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Timbuktu
Ugh - it is awful that you are still having such pain. I worry about whether or not the bone/joint pain I have, which I think is due to the herceptin will stop once that has gotten out of my body.
I hope you can find some relief for the pain - do they give you anything for it?
Glad your relationship stuff is going well - that is the key to happiness - I so agree but it sure helps when we also feel physically better.
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As long as we are under 5,000, I think we are all okay ;-). Of course who is to say if we are still posting in the year 2525. By the way, I think you don't get another post added to your number each time. I was at 893 for awhile, but then all of a sudden finally went to 894. I do know I posted more then one during this time.
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Rockym - if we are still posting in 2525 then that means we are all more than 10 year survivors which sounds pretty good to me.
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Julieho - Congratulations on the upcoming birth of your grandchild! There is nothing more life affirming than an event like that. I am sure you will be a great help, regardless of your energy level. When my grandson was born, I spent a lot of time sitting around and just rocking or holding him, so you can totally save your strength by "spelling" your daughter without taxing yourself too much. Also, newborns love to be walked. If you need fresh air and exercise you can add that to your schedule and take nice leisurely strolls while your daughter takes a shower or sleeps. What your daughter and son-in-law need the most is few minutes to themsevles and you can provide that even if you are fatiqued.
When I was intially diagnosed and trying to make all the tough decisions, it was my grandson that gave me the most joy and energy during that time. I had him sleep over every Saturday and it TOTALLY got my mind of all this BC crap.He was a lifesaver for me.
So as Baba Ram Das says: (I am dating myself)..BE HERE NOW.. enjoy this wonderful event. I am about to become a grandmother again to a new little girl. She is due on Monday. My walking shoes are ready!
Rock: I just hit 100.. totally don't want to get in that big number group.. but enjoy the company on these boards. Hope everyone has a good weekend!
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Julieho, Just Susan, and Deb-in-LA,
Welcome. I was about to say that I'm one of the graduates from this group, but that is probably a little pre-mature. Last summer I was a complete mess, and today I'm feeling pretty together, but I never want to rule out the possibility of a another meltdown. Nor would I want to. I used to be really good at holding myself together, but last summer I feel apart. I went from being 'super girl' who 'sailed through cancer' to the lady with the smudged make-up sitting in the her car at the side of the road, and sobbing her eyes out. Somehow I rebuilt myself. I don't know how, and I don't remember the exact steps I took to move ahead, but somehow I managed to feel good again. And I like myself again.
The thing is - we never return to normal. And there is no 'normal' to return to. Instead, we have to take our new selves and try to re-insert it into our old lives and it just doesn't work. And our 'new selves' are a work in progress, and a fragile one at that, and they just don't fit in anywhere. Last summer I felt like I was held together by glue, (the crappy kind) and even though there was the possibility that the stars would align and I'd have a lovely night, it was just as possibly that I'd end up a broken heap on the sofa, with a bag of chips over my head. I didn't recognize myself. Nor was I able to relate to the girl who 'sailed through chemo' and wore 'screw cancer' boots to her treatment and went out for lunch after with her friends. I loved that girl! People would say to me that it must be so hard, and I'd kindly say that it's not as bad as I thought it would be. My warriors had kicked in big time and they wouldn't let my look anywhere but ahead.
And then my warriors left. And all my fighting spirit went with it. I was no longer surrounded by docors and nurses and people telling me that I was doing a 'great job'. Friends were relieved that things were 'getting back to normal' and that left me speechless. Whatever it was that was brewing inside me was something I didn't recognize, but it was far from the way I was. And then my cheering section dissappeared, and that was just about the time when the new 'invisible' struggle started and I didn't have any weapons. At all. It was a very lonely time.
Finding Rabbit's post on the board was a Godsend. I didn't know what was going on and I couldn't explain it, but when I read her situation it could have been me. (Except, substitute pets for kids). I especially related when she said she wanted to find herself - cus that's how I felt too. I missed the old Janet and I couldn't find her anywhere. Instead, I was left with this crazy lady with grandpa's hair-do and a tendency to curl up in the dog bed, with or without the basset hound.
But you rebuild. You kind of wipe the slate clean and slowly incorporate your experiences into your head, and absorb what has happened, and rediscover the parts of yourself that are valuable and boot out that parts that are not. And one day you'll find that all the parts start to connect and you can take large strides, rather than the small tentative steps that we once took, in order to prevent ourselves from falling apart.
Finding the balance is trial and error. And I agree that it's like PTSD. Finding people who understand helps. Knowing you're not alone helps too, I think. And taking care of yourself helps , though if someone had told me that last year I would have thought 'what's the f*clking point? I just want cake'. So my new advise would be that if your want to spend your day in bed - spend it in bed. Sooner or later you'll have to get up, but sometimes you just need to cry our eyes out.
It's just SO hard. But I promise that there will come an time where you will celebrate your 'new normal' and you will feel happy again. Friends will continue to tell you how you 'sailed through cancer' and you won't feel the need to punch them in the head. Like Julieho said, we kept all the tough stuff to ourselves. We had no choice but to be brave, even if we weren't. And we had to reassure our mothers we were fine, cus we couldn't stand to see our mothers cry.
Please have faith that you will all be okay. This is really the toughest time, and don't for a second underestimate how much you are still going through.
Janet
Timbuktu- Hey, fantastic news about your relationship. I'm really happy that things have improved .0 -
Janet M
Wow, thank you so much for your post. I just sat and sobbed as I read it. I SO relate to all that you describe going through and I also wept at your words of encouragement about starting to feel more yourself again and finding a new normal.
It was the part about all the parts starting to connect again and taking big strides that just leaves me breathless. I literally can not imagine that right now. I feel like I am seriously going crazy and I just don't understand why everything is so hard right now.
I will take your advice and try to take care of myself, accept that "this is where I am right now" and over time things will get better.
Thank you so much for your post.
Take care,
Julieho
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Rabbit43 - YES, dreading October. My grocery store already has the posters up of a woman in a pink bandana. I began my chemo during October two years ago. I remember the cashier at the checkout counter asking if I wanted to contribute $1 to breast cancer research. I told her no thanks, I already donated some of breast tissue.
Timbuktu: yes, it's the NOW that is difficult for me too. I worry about recurrence in the days leading up to an onc appointment, but other than that I don't really give it much thought. SO glad to hear that therapy is helping with your relationship. My husband and I only went to two sessions, spaced many months apart, but it helped enormously. We both had so many adjustments to make, both in our internal attitudes as well as how we behaved around each other. We seem to be on a much more even keel now.
Julieho and Lenn13ka - congrats on your grandchildren! I never had children, but my stepdaughter's litlle girl is growing up with four grandmothers, and won't be making the distinction between who's blood and who's step. I'm incompetent as a bachelor when it comes to babies, but it is still such a treat just to hold her in my lap or sing her a song.
Lenn13ka - we must be of a generation, as I do remember Ram Dass! Never read Be Here Now but read another book of his about all the different ways to meditate. Be Here Now has been one of the phrases that has helped get me through this.
Janet - wonderful post. You summed up what so many of us have been through.
I often feel like I don't know who this person is inside my skin. What happened to the woman who would work 10 hours straight even without a boss over my shoulder? What happened to the woman who would go on long hikes and kayak trips every weekend? What happened to the woman who had to remind herself not to walk so fast because her companions didn't have her long legs and high energy? That woman bears no resemblance to this little old lady who has to sit and rest after a few half-assed hours of work and a slow walk around the block.0 -
All of these last posts have made me stop doubting my sanity! Thank you, thank you! I have been a mess since my exchange surgery in August. I also just returned to work for the first time since my BMX in December. I have been an emotional wreck. Crying at the drop of a hat, much more than the warrior who got me through the last several months. Thank you for sharing what all of you have gone through and making me realize that this is normal right now. I can take the men with the white coats off of speed dial!
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Are you on Arrimidex? It makes you cry.
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Not Arimidex, but Femara. That particular issue is on my list for my next visit with MO in October. I do not want to be on an antidepressant again(was during first few months after diagnosis). I am wondering if the Femara can cause depression months down the road. I have been off of Lexapro since March and have felt good up until the last month or so.
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I became very depressed six months in to femara........and fine when i stopped it so no doubt it was that....
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