Why was I stronger DURING treatment than I am now?
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Couldn't agree more Janet, with everything you said. So glad October is over, I notice that we were diagnosed at the same time. I was on July 5, 2011. It sounds as though we're at a similar stage, ready to leave a lot of it behind.
I was, however, very aware of the impact the treatments made. I felt fine on July 5, remember talking to the dr about how i'd just taken a long bike ride and how much I loved it. Didn't suffer much after surgery either. Was back on the bike soon after, feeling fine.
But then they found a micromet in my node and I went through 6 months of chemo. Still not recovered from that! Then the anastrazole.
Those Se's seem to be easing, thank God! But it was the treatments that wiped me out. Of course it's worth it if it keeps the monster at bay!0 -
Timbuktu - Yes, we're about a week apart in our diagnosis. I didn't suffer much after surgery either. Physically I could handle pretty much anything - even though it sure slowed me down. It was the emotional stuff that took it's toll. That - and the steroids. That was the worst! I remember throwing a cereal box at Jim's head for no reason 'cus I had basically turned into the Incredible Hulk. When I start thinking I can dredge up some pretty good lows but my mind doesn't often go there. Like you said - I'm ready to leave a lot of it behind. And, there are some things I will choose to carry with me forever.
I'm glad your SE's are easing. Have a great Monday, Janet0 -
I remember being terrified of surgery, and it was a breeze. The next morning I was back at work at 9am, albeit prone on the sofa with a laptop! Chemo was also scary, yet for some reason I was less scared, maybe because it didn't involve sharp knives. I braced myself for 3 months of yuckiness, and got through it OK. It was the 20 months of fatigue that followed that I was completely unprepared for!0 -
I think we really should have been better informed. Had we known how long it takes to recover it wouldn't have been quite so traumatic.0 -
I agree Timbuktu...........I felt conned at the beginning and still do sometimes - I also think the wider oublic and employers should be better informed as everyone expects us to spring back as though we just had a bad case of flul or something, not life changing, body changing systemic illness,0 -
Janet, Timbuk, cfdr, Lily, mstrouble….”My Peeps!” I read this thread at work so I don’t have a lot of opportunity to respond. I read, empathize, send a lot of love/wishes through the universe. I have no one in my life that understands that I’m not, nor ever will be, back to my good old self. You all do and that keeps me sane (and out of jail as I think I may have committed some type of crime by now). Yes….the day I was diagnosed I felt FAB…happy healthy…just lost 20 pounds…so hopeful and loving life. Had just reached a place where work/home/hobbies/peace were all balancing for the first time. I feel less sad than last year but I’m angry/emotional. Angry that I gained 50 pounds and my joints hurt. Angry that no one understands me in my life. No one asks how I feel and really listens….I’m tired. Really pissed that my boss just walked up and caught me typing this. Crap! Thanks for sharing your feelings….
Debra (Purl)
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Hi, i have posted on this site a couple of times but haven't stayed connected with the members who post here. I realized today that during treatment I was very active and connected to members on other boards. However, since the end of treatment I post occasionally but don't really keep up or make it a priority like I did during treatment.
I think this is a part of my depression that I'm just now coming out of with therapy and an antidepressant. Of all the boards post treatment this one has been the most helpful to me. So I'm going to try to connect with members here and post more frequently here. I think making these connections like I did during treatment will help further with the depression. So, if I send I PM to a few people periodically (as well as posting publicly I hope people will tell me if they mind?
Thanks and hugs,
Peggy0 -
I do not mind if you (or anyone) sends me a PM, Peggy.
I started a tai chi class in September. The instructor's wife was just about to start chemo for ovarian cancer. Last night he was saying that she'll be done at the end of the year, and the doctors are telling her she should feel fine by mid-January! On the one hand I don't want to be Downer Debbie, but on the other, I get so angry when I hear oncologists downplaying the post-treatment recovery. It was 20 months post-chemo before I could even think about a two-night-a-week class, and I'm thrilled that so far I only missed one due to fatigue.
Lily, I'd be happy if people *would* consider it a bad case of flu...a flu that lasts for a couple of years...0 -
cfdr - I just bristle at what the doctor said to your instructors wife. What a lot of bullsh*t. I wish that they'd stop using words like 'normal' and 'fine' to describe our lives once their work is done. It starting to strike me as very arrogant to say that once you're out of the hospital system everything is AOK - as though being under their care is the only thing that matters. No wonder we go down the deep dark rabbit hole - and wonder why we 're so depressed. The end of one situation is just the beginning of another. Timbuktu is right, they should inform us, so we could be better prepared. I was so well-armed for treatment. I had my exercises, juices, creams, kale, cabbage, and bok-choy all lined up. For post treatment I had nothing! Totally unarmed.
On the other hand - I'm going to be Debbie Upper . Maybe the instructors wife will be okay for twice weekly tai-chi. I've never practiced myself, but I did do twice weekly (gentle) yoga all during chemo and radiation and it was the best thing for me and my aching body. The only crummy party was getting myself out of the house on a chilly winter evening but I feel that way at the best of times.
Janet0 -
Peggy, I too have found this discussion board thread really helped me after treatement stopped and the depression, aches, pains and side effects of treatment and the aftermath of reconstruction remained.
I have been struck lately by how little I want to share with my friends and family about this stage of the treatment and recovery. And hence why this group and the postings on this page are so very important to me.
I believe this is another stage - and that in a year or two, whereas I may still have some of these same aches and pains, cringe slightly at the sight of the reconstructed tissue on my chest (that only resembles breast under clothes) and still feel a bit on egg shells about a new cancer being found, I imagine it will be somewhat different than it is right now. Still another stage of this recovery. Life has always been that way for me.
What is hard is that day to day now I somehow feel like I am doing it wrong if I get up in the morning and recognize and allow myself to move really slowly for the first few hours some days. I have neuropathy, some kind of residule muscle, liganment, joint pain mostly in my shoulders, hips, legs and knees and the constant reminder around my chest that these two implants are there. Some days the physical pain or constant reminder stops me in my tracks and somedays I am able to function quite fully despite it. Some days my soul is tired, scared and depressed and sometimes I allow myself to feel this way without judgement. Some days I can't and I pile judgement on top of it. Some days I get up and go forth into the world "acting as if" none of this is happening, but there is never a time I am unaware of it altogether. I imagine this may one day change but, I also can imagine that this may always be the case.
A friend of mine right as she began treatment for her ovarian cancer several months back said to me that she wasn't going to let the cancer define her. I thought at the time, is that what I have done - is that what has happened to me?
The daily reminders are better than they were last fall at this time, while I was undergoing chemo. They are better than they were last winter and spring when I was fighting off post surgical infections and having reconstruction. But, today they are all still there.
I do not believe cancer now defines me, but it has changed me.
Take care,
Julieho0 -
In "Breast Cancer for Dummies", at the end of the chemo section, there was one sentence..."some women say they never feel the same after chemo". I've thought of that sentence many times.
Three months after chemo my breast surgeon told me to get back on my bike. She wanted to see me moving again as it helps prevent recurrence. She said that whenever she sees me she thinks of me on the bike and she wants me back on it. I asked how long after chemo would I be up to it? She said at 3 months all of the chemo was out of me and I should be ok. THAT threw me into a depression! There was no way I could get back on a bike at that point. I could barely function in the house. My balance was off, walking was hard.
For the next few months I tried. I went out for walks in the sun and my skin blistered! Something strange was going on.
So I called my onco at Sloan. I spoke to the nurse. I told her chemo was over but i still felt bad. I could not think straight. My skin blistered. My surgeon said I shouild be "normal by then.
The nurse was shocked and outraged. She said "It's too soon!" She said it takes a YEAR for the poison to leave your body. she said that only after a year, would I slowly, slowly feel the improvement. The blistering was the chemo...still in my body, months after the last infusion.
I felt like jumping for joy! The surgeon was thinking she was being upbeat by minimizing what was going on. Plus, I think she was ignorant about chemo. But being told that I would not BEGIN to improve until a full year had passed made me so happy and so hopeful. As the saying goes, the truth shall set you free. I only wish I'd known how it worked from the beginning.
It's a year and a half since my last infusion. In spite of the SE's from Anastrazole, I do feel my strength returning. Baby steps!0 -
Someone please remind me not to take it personally when no one comments on my post. I am an emotional basket case today and need to know that someone read it. Oh, this sounds so desperate!
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Purl - hang in there; we are here for you! I laughed when I read about your boss sneaking up on you - why do they never catch us doing all the great things we do at work?! Sending you hugs and hope for a happier day ahead!0 -
So sorry Purl. I think I felt you were under the gun, sneaking in a quick post and not really available for interaction,
Nothing personal at all. In fact I was touched.
I know how you feel, it's very easy to get offended on line....
Thank you for sharing your feelings.0 -
Debra - yes its total c**p.....so many days I wonder if its me and some days, more and more again I find myself thinking of well I´ll be dead soon.....so it will end then, even though I don´t want to die but I don´t like the life I have right now, I am not ok with my body, my relationship, my aches and pains and lower tolerance of people (in fact a lot of the time i wonder why I bother with people at all, apart from this board) and I don´t really see a bunch of reasons to want to live for apart from the fact I have dogs depending on me............0 -
Lily, i share your intolerance with people.
I see you are only a year and a half out from diagnosis. Hang in there for another year. You will see it gets better.. Your dogs need you and so do we.,
I think there is something about coming to terms with mortality that changes our perspectives. Sometimes I do feel like giving up.
And other times I treasure every moment. People...they cause more pain than anything. And at other times they can pull us back from the brink with a simple word or act of kindness.
What this experience has taught me is that I want to be the person who offers the word or the kindness that makes the difference. Once you know what it's like not to have that...I think it's a moral imperative to offer it. The world may seem irrational and chaotic but I think it's up to us to make sense of it, each in our own way. I hope this isn't too preachy, but it's from the heart. I have to find purpose in the suffering, hard as that may be.0 -
I am a kind person i always help others but often find i am the one not helped unless I am paying for it, eg a therapist!! I am told I have a good coping persona so people dont know whats going on underneath but my covering feels paper thin right now and I am mizerable, glad i am not alone though0 -
Purl,
Oh how horrid that no one acknowledged your post! That has happened before to me before and it is a strange feeling. sometimes I do worry that I am posting too much and I do hold back. But I always look forward to seeing the familiar faces and who has posted. So many of us on here seem to feel the same thing at the same time. it is a comfort.
Purl, you were one of the first people to respond to me on this thread, so you will always be a very special part of it. I got a great deal of comfort from you at a desperate time
. I have just had a long chat with my sister, and I realised she has no idea of where I am up to emotionally. Julieho, I think it was you who said you share very little with your family - I totally get that. I do not believe there is any one 'non-cancer' friend/family/neighbour has any idea what being dx'd with cancer is like. How can they I suppose? My sister was sniffing away saying 'I have a cold, feel rough'. I cannot bring myself to be sympathetic. For me, the cancer dx leaves me feeling isolated, apart, different - somehow a failure . One curious feeling I had and still have is 'shame' about it. I cannot work that out, but I partly think it is about feeling shunned and whispered about, the head tilts, nosiness, intrusive questioning. And mostly the 'relief' writ clear on people's faces which says: 'I'm so glad that's not me' - Does anyone else feel that way too? Shame?
Oh yes, I am about to have another op (Thurs) for my bilateral oophrectomy. So another stint on the operating table. No wonder I am depressed. I think I am having far to many duvet days than is healthy.
Love to all special people on this thread (and anyone who wants a home here too).0 -
Lily,
We posted at the same time, I did not want you to feel I ignored you. I completely get what you are saying, the 'existing' thing, the non-living. So, feel that way. I keep waiting for it to lift, but it won't.
Perhaps, I/we am being impatient? it's still so soon after dx. I cannot really see any joy, pleasure, fun right now.
Don't know how to get back on an even keel. Just that will do.0 -
WEll Wintersocks you have a cosy name and have at least 1200 posts less than me so if you post too much I am waaay beyond hope!!! I did post a message on a thread to wish you luck with your surgery as been thinking about your upcoming surgery . hope you have some nice things in for your recovery?
I could have written this too quoted from you in italics below and I am beginning to wonder if there is any point in spending money on therapy if I just never feel ok......why should we feel shame yet I do and in fact now think I am out of touch with all my friends from before bar one...........I envision myself in a little room with one fire and loads of animals at the end of my life........and some days I really do think oh well I´ll be dead soon then I feel guilty as one of my BC friends who really wanted to live died aty Xmas last yer nad it was a real shock as we were dx at the same time, this whole thing is a real head f++++r, sorry but noting else fitted!
feeling isolated, apart, different - somehow a failure . One curious feeling I had and still have is 'shame' about it. I cannot work that out, but I partly think it is about feeling shunned and whispered about, the head tilts, nosiness, intrusive questioning. And mostly the 'relief' writ clear on people's faces which says: 'I'm so glad that's not me' - Does anyone else feel that way too? Shame?
Will be thinking of you on Thursday....
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Purl! I was so happy to hear from you. I read you post when I was standing in line at the bank, and I was so happy to be called one of 'your peeps' that I was smiling from ear to ear.
I read every word and am so happy to hear that you're less sad than this time last year. I guess the anger and emotion lingers for a while - there is no time limit. I know that doesn't make it any easier...it's really tough when BC takes you down when your on top, and then keeps you down for way too. long.
Also Purl - Good for you for asking for feedback. Asking for what you need is such an important things to do and I think that it's so great that you spoke up to find out who out there is reading. One of my favorite lines EVER from a movie is in 'As Good as it Gets' when Helen Hunt demands taht Jack Nicholson to give her a compliment. 'Give me a compliment right now,' she says, 'I nead to hear it'. I just found that so brave, and so smart.
Big Hug
Janet (Your peep)0 -
Purl, your post was much appreciated by me. I, too, felt great when I was diagnosed 1/2012. It's a heckuva long road and I'm still in the reconstructive process.
Lily55, Wintersocks, JulieHo, I wish I had the words to help you. I'm glad you feel you can be honest here because, believe me, I understand. I find myself not wanting to talk about cancer or my health or how I'm doing with anyone who hasn't had breast cancer and that is a lonely place to be, especially since I still think about it almost every waking moment. I have to believe that this will pass and get better. As has been said, it is the elephant in the room right now, taking up all the space, but I have hope that it will slowly shrink into a mouse in the corner. This month, especially, I am trying to train my mind to name things for which I am grateful. It won't solve everything but it can't hurt.
Janet, you know I always appreciate what you write. I can't believe what that surgeon told cdfr, either, or Timbuktu. Good grief, somebody inform these people! The radiation I had last fall is only just now easing up on my body, the 6 months of chemo I had that ended in February is still having its effect on me, I'm sure. Thank goodness I took extra time between the end of chemo and reconstruction. My body needed a break then and needs another break now! I need my mojo back in so many ways.....does anybody know where it is???0 -
Ask and ye shall receive. I feel so supported and heard. Thank you for such thoughtful and warm responses to my “plea” for feedback. I just think the world of you ladies. Janet_M, I do love that line in “As Good as it Gets” too and so many more in that movie such as “Sell crazy someplace else. We’re all stocked up here!”. You always make me smile. Lily, please hang in there. Feeling of shame can mean you have may feel like you brought cancer on yourself and you deserve it somehow. It can be very isolating feeling (trust me I know). Please be gentle with yourself. Wintersocks, thank you for you. Timbuktu and BayouBabe and JulieHo ~ thank you for sharing, caring and love to the newbies too.
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Thanks and hugs Jeannie.0 -
I guess it was March when I was DONE. It was amazing to look at my calendar and find I didn't have anywhere to go. So I didn't go any place I didn't want to. I slept a lot. I needed to. Kept trying to convince myself I should be "back to normal". What's that? I was pretty much a hermit all summer. I adjusted to that. Thanks to the ladies around this board, I realized being a hermit was part of the healing process. I still had to put me first. I've lost some friends, made some new ones. The new ones understand, they live close and are from BCO.
There is no time frame for healing. Some are faster than others. Take your time and don't beat yourself up. Please don't compare yourself to anyone else. You are you, and WORTH it.0 -
ok purl-I responded but for the life of me I have no idea what happened it. But, I totally understand where you're coming from. My emotions go from one extreme to the other, and i sometimes think no one is listening or really cares. I realistically know this is not true but it's how I feel. You are more than entitled to how and what you feel. And just a personal note I think you and the other women on the board rock. You have always been here, understand what I'm going through and the best thing is no one judges me.0 -
Purl, also happy to be one of your "peeps"! It is great to hear that you had gotten to a place of balance...that's the part I'm struggling with now that the fatigue FINALLY seems to be fading. When I could hardly do a damn thing all day, there wasn't much to balance. Now, whatever I do, I think of the 5 other things I should be doing, too. I need to work...exercise...cook...clean...meditate...sleep...and maybe actually do some things that I enjoy that make life worth living, too!
Oh, and I have to remember to inititate sex, since I don't have a sex drive to remind me, and my husband is afraid to initiate it after a year plus of near-constant rejection because I felt like crap.
Julieho, I really relate to what you said. It is hard to be struggling, and at the same time feel like it's my FAULT some how that I'm struggling. Sometimes I really needed to just lie on the sofa, but I felt guilty about doing so.
I honestly never understood all the fuss about breast cancer back before I had it. Why did people make such a big deal out of being a survivor, when in many cases, the odds of survival are quite good? Now I understand. It's not just beating death, it's surviving treatment. I don't want to let it define me, but yes, it's changed me in fundamental ways, physically, emotionally, cognitively, and in terms of how I spend my time. My business has changed; my marriage has changed.
I had one close friend who had it, and with multiple surgeries and chemo, she never missed a day of work. She went through hell, but when it was over she put it behind her and never looked back. I thought that would be me, too.
I'm really, really, ready to put it behind me. But it keeps reaching up and grabbing me. For instance, I was starting to experience some joint pain, so I signed up for tai chi because its supposed to help. Now one knee has swelled up like a balloon and the other one hurts! So I have to take two steps back, spend a day icing my knees, maybe sit out a couple of classes, skip my near-daily hikes until the swelling subsides. And I don't want to say a word to my husband, because at this point he thinks I'm a total hypochondriac.0 -
Purl, We all need to be acknowledged and heard, esp. by others with BC. The women here do this regularly. I wish I could bring you all into my living room right now for biscotti and coffee.
I'm getting over my sinusitis but am still very tired from it(on top of the other post BC treatment tiredness). However, this time last year I was just spinning from the diagnosis and early treatment planning.
Even though we may feel a lot of negative emotions in the aftermath of treatment, most of us remember the trauma of the early treatment period and know that this period is at least better than that was.
While it is true that the world at large thinks we're "through" once after treatment ends, doctors have no excuse for being so ignorant and so unhelpful in spreading untruths about the emotional trauma processing that we have to do once treatment is over. The timetable for everyone is different!
Let's give ourselves some slack here and give ourselves permission to feel ad and need comfort when this occurs.
Hugs,
Peggy0 -
Purl, I so understand when you post something and sometimes people just don't post for a day or so or we some of us post something about our own concerns. I check this board daily (actually I have to confess, sometimes lately more than once a day) and when a few days go by and I don't see a posting it is sometimes hard. Not because I think we should all post daily but I have come to rely so much on all of your experience and it is so affirming for me to know that the recovery process after we are done treatment can be a long one and is different for each of us but also so much the same....that helps me greatly.
I just had my port out today and was a bit of a wreck beforehand. To place the port they put you under general anesthia and to take it out (as I am sure most of you know) they keep you fully awake. I asked for a valium to at least steady my nerves. I am glad I took it and that my husband came - not because the procedure was actually difficult. The lidacaine was the only uncomfortable part of it, but I think just seeing my breast surgeon again, going back to the hospital, all that just makes me emotionally so up tight. And it seems like everyone is telling me its no big deal but the emotions again are the problem and that often triggers a physical response too.
In fact because I was taking a valium I didn't take my pain medication in the morning (I am on low dose hydrocodone for post mastectomy pain syndrome and muscle/joint/ligament pain that I believe is from chemo). I was shocked at how physically uncomfortable I was by 10:30 this morning without it.
Anyway, I am home cuddled in bed with my dogs - feeling okay - the local hasn't worn off yet but just needed to rest and unwind.
All of you are a miracle for me and I so appreciate all of your responses - whether they are about your own experience or in response to others, it is all so valuable. I see my genetic counselor tomorrow regarding the mutation they found in a large genetic cancer panel they ran several months back. It is called an NBN gene mutation and I will find out what if anything that means for my continued follow up and for my sister and children.
With gratitude,
Julieho0 -
Julie, I hope the rest of your day went well, and you got a chance to kick back and relax. Good luck tomorrow!0
