Why was I stronger DURING treatment than I am now?
Comments
-
Yes, exercise of any kind is like rhe silver bullet. My energy is returning (5 weeks post- last infusion) mails not Hurting, eyes watering less, 5 o clock shadow sort if appearing on my head. Spirits still volatile. Mad and disbelieving, assuming that all thus will actually get rid of this crap. Sad to have breasts that don't feel but glad there is no cancer in them. Wondering about the future.
0 -
How sad. I just need one person to respond to my post a week ago. It wasn't easy to share from that depth and in the emotional state I'm in, I really would like to know that someone read it. It's so unlike me to need this but I'm not myself these days.
0 -
Purl, I know exactly how you feel. My friends have been wonderful but there are times I just cannot put on a happy face. I am tired and lonely often. I am single and do want to go back dating but my kind is not there. How can I date when I haven't found me yet. Please know you are not alone. Feel free to pm me at anytime. Take care of yourself. This battle is more then about the boobs. That is what really surprised me.
0 -
Purl51 I read your post and relayed my story (in a nutshell really) I was hoping you would read it and be encouraged by my experience. Take care.
0 -
Purl51...I am so sorry. I started this thread a couple of months ago. I have it on my favorites and I also get e-mail notifications when there is a posting. I read your post (as I do everyone's) when it came in, but did not respond and now realize that I should have. The truth is, that I want to respond to each and every post on this discussion board. I did that for awhile, but then things got a little crazy during the summer at my house, so I didn't respond as often as I wanted to. I credit this board for getting me through one of the worst times of my life.
I can totally relate to what you wrote in your post. When I wrote my initial post, I was in a very dark place. As I read it over now, on one level it almost seems like it was someone else who wrote it, but on another level I distinctly remember how strong my feelings were at the time. What you wrote about the myriad of emotions that BC and treatment set off, particularly after treatment, are very real to me.
I feel like I turned a corner about 3 weeks ago. I realized that my anger at the people who didn't handle things the way I wanted or expected them to, was getting me nowhere. I also realized that worrying that I would get sick again was not going to prevent it in any way. I don't think I have as much control over things as I thought (and wish) I did, so I got to the point where I decided to do everything I could to keep myself healthy (by keeping all of my doctor's appts., eating healthy, exercising and taking pleasure in life). I only tell you this in the hopes that you, too, will join me. If your aren't there now, you will be soon. I am certain of it.
I also have those feelings of wanting to make a difference in the world and do more for others, so I have taken up some volunteer work. It makes a big difference to know that you can make a difference in the life of others. I figure that I am still around for a reason, so want to make the most of every day.
Purl, you are not alone and are very strong...all of us are, and we are here to help one another. I am sorry that you didn't feel supported here. Please PM me any time.
0 -
Joanne_53, Scottiee1 and Rabbit43: Thank you so much for responding. I feel so much better. Truly. So sensitive these days. Bless you all.0
-
Purl -
I'm really sorry you're going through this. The fact that the thread went quiet - is in a way a good thing - as a few of us are slowly finding are feet. It takes time, and it seems impossible, but eventually you will reconnect and things will seem a little kinder.
It's so hard though. When Rabbit first started the post I thought that she could be describing me. I did so well during my diagnosis, my surgeries, my treatments - and then once it was all over I collapsed. I looked for places I could go to cry and I felt disconnected from the world. I relayed and incident here a while ago about being at my sister-in-laws for dinner and it was sort of fun, except that I was sweaty and miserable, and the conversation turned to what her second car should be as her SUV wasn't practical for the city. I almost turned the table upside down and screamed 'what the hell is wrong with you people' but instead took off to the TV room to hang out with the kids. I had a real moment of being in the wrong clothes, in the wrong house, with the wrong people, - just living the wrong life. I wanted something more authentic but I didn't know who I was. I didn't recognize the person inside me, and I knew that I wasn't ready to go back to casual Sunday night dinners where everybody carried along as though nothing had every happened. My partner, I realized, had a look of 'what's wrong with you' and I was ready to kick him to the curb if he dared to say it out loud. (He didn't. Smart fella)
Sad, pissed, tired, hungry, and achy are normal. Fragile is normal too. So is lonely. I've had amazing support, but sometimes feel so alone that I could just crumble. When I returned to work six weeks ago I felt as though I was in orbit, and I went through all the motions without my feet every really touching the ground. Nobody knew why I'd been off for eight months so there was lots of talk about my super-short hair and all my hats. I can't say that I looked like Chaz Bono, but I certainly didn't look like me. (By the way, Chaz got me through the fall. I was glued to his lousy dance moves) But I have looked like lots of other things. An egg, Bozo the Clown. Currently, according to my sister, I look like a Chinese baby because my fine hairs stand straight up on end. I've started to wear scarves, and now my sister says that I look like 'Rhoda, crossed with a Chinese baby'.
And I didn't care about my job. It seemed frivolous - and required too much of my time, when all I wanted to do was concentrate on me.
Purl, don't be too hard on yourself. The fact that you don't want to return your friends phone calls is okay. Falling apart is okay. Being jealous is okay. In fact, everything is okay as you try to find yourself. And in the struggle to find the old you, you may find that she doesn't exist anymore, and a lot of the pain (mine, anyway) comes from trying to put the new you back into an old life. Allow yourself all the anger that comes from a year of challenges, loss, and trying to keep things together.
You can do something to make a difference, but you don't have to do it right now. Heal, learn to get yourself to know yourself again. Let your friends get to know you again. Give yourself a mental break. Then, if you still want to open an orphanage, maybe start by volunteering somewhere on the weekend.
I too thought that this was going to be an amazing, care-free summer. But it's not. I have another surgery coming up in the new year that haunts me. I've had a few fun weekends, but I'm choosing evenings alone with my dog over a night out. My partner, who has been incredible, doesn't understand that some of my work is just beginning. Today we got in a fight cus I don't want any toxic cleaning products in the house. Tomoxifen is making me hot and cranky, and I can't wear my favorite tank top in public because one of my nipples is facing in the wrong direction.
Tonight I'm on my own - in the aforementioned tank top - having a glass of wine, and I'm pretty happy. But it takes time. The post treatment period is definitely a b*tch, but it does get better. Don't underestimate how much that your body has been through, and how very very very very exhausting it all can be. To get what we want, we have to learn to ask for what we need. But, as we start to get to know ourselves again, its very hard to know what that need is.
I hope your friends find some empthay. You certainly deserve it. And I hope things start to improve for you - I really believe that they will.
Janet
0 -
Janet, thank you so much for sharing this was us. Everyone's story is different but so similar too.
0 -
I'm sorry Purl. I'm not sure what i was going through that i did not catch your post. can't say much now because only one hand to type with. the other is out of commission for i guess 6 weeks. i was a dreadful mess when i first found this thread, about a month ago. was haunted by the need to commit suicide by jumping from a local bridge. seemed the only way out. had to retire, got a counselor, vented here. doing much better except for stupid broken finger making it so hard to do anything right now. still, am in a far better state of mind. i think it is natural to move away from the superficial crap and work that we don't care about. at first there is anger with that but the anger will pass if we allow it. then maybe there are some changes we need to make to give our lives the depth this cancer dx has called us to. keep sharing. i may have to go stay with my mother for a while and so will have no internet access but hopefully others will keep checking in. i hope you feel better quickly.
0 -
I haven't posted for a bit because I feel a bit embarrassed. I seem to get it together for a day or so and then I'm a mess again. My biggest issue is that I wake up every morning going over various scenarios. I think about the fact that I no longer have my period (which I indeed miss for some reason) and how my daughter will be getting hers soon. I feel like I won't being sharing that situation with her. My beautiful hair is now in the growing out stage where every few days it looks different and I feel so unattractive it hurts. Once again, my daughter has her beautiful long hair and I was always told how much we look alike... no one says that now. I even feel envy as this lovely little girl who is starting to develop and become a women, while I now feel old at 47 and menopausal with hot flashes and night sweats. Who stole my life? Where are the years I was suppose to have while she matured?
I also lay in bed in the mornings thinking that maybe when my son graduates high school in four years, our family photo will look nice and that maybe I'll look like my old self again. I also think what if the other surgeon in the practice did my surgery... would she have only taken the sentinel node, which was clear and chemo would never have happened. If she did the surgery would I never have needed the additional surgery after my lumpectomy that required a drain for the week.
I even went back to my gym to exercise and deal with these emotions (not to mention seeing my counselor) and it's possible I worked out too heavy with some chest exercises and currently have a swollen breast. It's been two months and I've had to buy a larger bra to accommodate the larger breast. I went to a PT and do massage on the breast, but nothing has changed. Some say it may go down in time, others say it's forever. I think about lymphedema now that the breast is swollen and I'm scared to fly. I've spent numerous hours shopping for tanks and bras and have spent hours doing research on the possibilities of what may be.
I'm only 47 and every time I get nerve pain I wonder if it will be permanent. I have cried more in the past 6 months than I have my entire life. I keep wondering when I won't have my physical and emotional health on my mind. I worry about my children and how they now have to deal with a mother who is far less patient and currently can't find happiness anywhere. I've tried various meds and so far everything I've taken has made things worse so I'm banking on the old expression, time heals all wounds. Here's to time.
0 -
RockyM,
Please don't be embarrassed. I think getting it together for a day or so is sometimes a big enough accomplishment.
I don't have kids, so I can't pretend to understand what a mother goes through, but even if you can't share the same thing at the same time with your daughter, you still have a mother's wisdom, and you are still irreplaceable.
I have a sister who is one year older than me and we look almost identical. The difference is that she has a huge bust and blonde, curly hair. And I have little bust (even less now) and straight brown hair (much less of that too). Some people can't believe our resemblance, and others can't believe we're even related. That is the power of hair. Some people can't see past it. But no matter how your hair looks these days, in all the family photos, you will still look like their mom.
I'm really sorry that you're going through so much. Lymphadema sounds like a bitch - too much to deal with after you've been through. And if that wasn't enough - it sounds like your head is spinning from all the different scenarios and there's not very much relief - you must be exhausted.
I don't really think I'm being any help - I just wanted to say that you should never be embarrassed to be a 'mess'. We all are, at one time or another. I know I certainly am a lot of the time.
Also - I absolutely love your line 'Just when I'm about to make ends meet, someone moves the ends'. It sums things up perfectly. Take care,
Janet
0 -
rocky, you -- all of us -- have been thrown into a major physical and emotional tailspin. we suck it up through treatment, maybe because we are in shock, but then we are left to make sense out of what our lives have become. there is definitely a lot of grieving involved. a lot of anxiety and fear too. i do hope your swelling goes down. that does not help. i know i hurt myself temporarily at the gym, and then i stopped going. that isn't good. still won't touch weights though. not that i could now in this cast. anyway i will keep you in my prayers. i do believe that time will help you feel better. you have to keep working through the emotions,
i will probably check here tomorrow night but then i am going to my mom's house where there is no internet. i can't manage here on my own with an arm in a cast and the other arm with le. since none of my 'friends' are helping i don't have much choice. so i will be gone about 2 months. probably 6 weeks for the arm then exchange surgery sept 4th. hope i don't have to put that off.
hugs and good luck.
0 -
Hi Dunesleeper: Funny that about friends.....what happened to being there in the good times and the bad. As someone else said to me "maybe they are not really your true friends". I have gone through this myself and it's sad. Good luck with the surgery....will be thinking about you.
0 -
I am thinking of you also -- good luck with everything. This is hard on everyone and then to have to move in with someone for support. I have a friend --- which has been anything but .... I saw her between Christmas and New Years when I drove 35 miles to tell her in person that I had breast cancer. She comes to my city 2 x a week and I have not seen her since the day I told her. She has called me 3 x and me her about the same. I believe now that she just could not handle a friend being sick with bc. She could not face it so better to not deal with it. It hurts like hell and I will not tell her but the friendship will never be what it was.
Know you have friends here and let us know how you are when you can.0 -
Yeah, lots of those friends going aroung.
Dunesleeper, (((hug))) and remember if you need us, we are as close as your nearest public library.
0 -
Janet, thanks for your words of encouragement. I suppose I feel embarrassed, as I've never been in this "head" for as long as it's been. I've been depressed before, but it usually lifts. I think the longest was maybe 3 months and in the past there was either something I could take or it would just pass by itself. There are fluctuations from thinking it will all be okay and that my body and mind will return to a good place and then waking up on other days thinking I don't want to be here anymore. There is such a push and pull going on and it hurts :-(.
The hair and the breast situation seem to be affecting me more then I could ever imagine. I feel deformed and damaged. I know there are many ladies out there in the same situation and I feel for them too. I went though adolescence without many insecurities and as an adult took care of myself physically and emotionally and didn't ever have those insecurities either. Now it's hard to get past these emotions.
You really are a help. Just having someone out there who understands and can remind me that it will be okay is a huge so thanks.
Dunesleeper, I wish I "opted out of poison." Everything I read that is current seems to point toward chemo not making a big difference with my 2 little micromets. The MO scared me (and that used to be very hard to do) and told me I only had one shot at keeping this from coming back as mets and that chemo would be the protection. My SE's during chemo weren't even that bad, but the hair, the discomfort and everything else that followed... well hindsight sucks. Thanks for keeping me in your thoughts and I hope all goes well with your mom. I talk to mine almost every day, but for so many past reasons, when she is in my presence I am tense and uncomfortable. She is only one state over and wants to come visit, but I've been nervous that it will cause more issues for me. She isn't able to help with the kids (has no real interest in children other then saying hi and seeing how they've changed). She always wants my undivided attention and about the only thing I can give my attention to for any length is the computer :-).
Scottiee and Joanne, a few of my friends stuck around, but many were just acquaintances and there really isn't much to say these days. I tell people I'm fine, but I want to scream that my life isn't the same. I tell them I'm doing okay because if I told them the real stuff that is in my head, it would scare the crap out of them.
I so hope that when I'm feeling better there is something exciting waiting for me out there and some type of new life that will be better than the old and better than the present.
0 -
thanks scottiee, joanne, Cindy, and Rocky. i, too, hope something better is going to show up for us. at the same time i drread another setback. well, i guess i'll feel damn good when i get the use of my arm back. just realized i start my pc repair class the end of august so i will have to have the use of my arm -- and be back home. i swear if he gives me a cast i will cut it off myself. here's the pic of the condition i have been in since thursday.
gotta find something to laugh about or something to be grateful for or i will eat myself up with bitterness. speaking of eating, i'm hungry. toast? or order something?
rocky my mo was not happy about my decision. in some ways it is a good thing. they are so sure that i am going to die that it inspirers me to stick with my diet, supplements, and exercise. well, with exercise it is more of a battle, but i have not cancelled my gym membership despite my financial problems right now. exercise is important. anyway, i just want to show them they are wrong and there are options. i sure didn'y want to pay them tens of thousands of dollars for the privilege of being made sick by their medicine.
0 -
a quick glance at that picture gives the impression of me telling the medical establishment and my crappy friends, up yours. lol
0 -
Hi Dunesleeper: I'm so sorry you posted the picture. It makes me feel sad. I wish I were
Living near you and I would help out in order for you to stay in your own place. Oh...
forget about the toast...if you can afford it, treat yourself, you deserve it. Sending you my
Best wishes and prayers.0 -
I'm sitting here tonight with tears in my eyes. I came here tonight feeling like a failure because everyone that graduated from my chemo dec 2010 group seems to never post and are all doing great. I am back on FMLA due to depression and I am having deep tissue therapy for pain, and wondering if I will ever 'feel better'. It didn't help that my boss at work has been totally unsympathetic and difficult ever since I returned to work after treatment. It is just good to read your posts here and know I am not alone. I do wish I was in the group of 'been there done that' bc sisters! While I was having treatment people complimented me on how well I was handling everything, often times they were crying for me! Well now I feel like I am a mess. I really hit a low when I saw my bosses husband drive by my house today-It made me angry- why? Do they think I am abusing my disability? Like I haven't been through enough? I feel so helpless in my situation! I keep telling myself I am going to the physical therapy and counseling to take care of myself first for once, instead of everyone around me. I suffer from guilt then, because my husband makes comments that he needs to work extra hours to make up for my not working. (He does have reason to be concerned- our financial state is not great right now.) I'm just tired of being tired! Thank you for sharing your experiences, because tonight I don't feel so alone. I am relieved to see some current posts here- a few threads I looked at were two years old! God Bless! Cathy
0 -
Hi all...hope everyone is doing well.
Hopefortomorrow...I hope you are feeling better tonight than you were last night. I think it's hard to put yourself on a time table with this stuff. We all handle things in our own way and in our own time, with the benefit of friends on these discussion boards, so don't be hard on yourself. You are not alone. Tired of being tired and sick of being sick are feelings I think we can all relate to. Hang in there. We are here for you.
Purl51...how are you?
Rocky...I'm with Janet, don't be embarassed to be a mess. I think I am a mess more often than not. We have all been there (and some of us still are!) Ha, ha!
Thinking of all of you.
0 -
Rabbit, thanks for the comfort. I keep losing it every few days. My "losing it" these days is going back over my treatments and analyzing what I did and the choices I made. I wish I could let some of these things go, but I'm not having a lot of luck. The biggest issue for me was that I did chemo and I now believe it was overkill.
I had a negative sentinel node, but my BS took out 5 other nodes. 2 were positive with micromets. I didn't really understand micromets back then and I've read that many doctors don't consider a micromet positive. Also, I was grade 1 with a small tumor. I know this is all hide sight and I try to think that maybe the chemo helped save my life, but sometimes we just feel things are right or wrong and I can't shake this one. I've researched a lot and have never seen someone out there with a negative SN, but other positive nodes. Anyway, it's been a year and things just don't feel right yet.
0 -
Thank you Rocky,
I am feeling better than I was the other night. I went back and read some of the threads again, and I noticed a few things that I have had the same feelings about! I was diagnosed in October of 2010, and finished all my treatment right around the time that your began treatment- or were diagnosed. For me, that is where I feel like I was expected to be 'normal' again. I also had taxotere instead of taxol. I was told that I would probably tolerate that better- and yet I felt like it was just as difficult, or that the side effects seemed more bothersome than the taxol was to my other Chemo sisters! I started growing hair back, and then after my taxotere treatment it started to fall out again after treatment! (not totally, but enough to frustrate me!) At that time I totally lost all of my eyebrows! I was going through radiation then, and I really felt ugly.
At first, losing my hair didn't bother me. It was when the treatment was ending, I looked tired and pasty skinned that I really missed my hair. I felt I looked as old as I felt. My fingernails were also really messed up, and my toenails are still a lost cause! I have had my hair cut twice now since it has started coming back. It has a life of it's own! Remember the 'Quick Curl' Barbies? That is exactly how I feel my hair is. It is curly and kind of wirey now. About a month ar two ago I noticed that I could finally feel my hair move on my head when I shook it! LOL such a small thing was a milestone! Just the other day, I looked at myself in the mirror and I felt like I saw the 'old me', as in pre-cancer. I do appreciate and count the positive things as blessings, my hair, and my fingernail beds have finally grown back. At first my nails looked like they were barely attaching. However, I am still too embarrassed to get a pedicure. My nails have come in shorter, thicker, and aren't attached right, and have a yellow cast. Ugh.
I bring all this up because I can totally relate to you missing your long hair that matched your daughter's. My daughter is now 17, and has thick, beautiful long hair. I also strangely have missed my period- I guess I resent being prematurely being pushed into menopause! I hate that the aging process has been hastened. It has made me feel old, especially since it has put me past the 'baby' years. I feel like I am now on the downhill slope! In June I turned 50, which doesn't help!
Right after I finished all treatment the studies came out about treatment 'overkill'. I have also wondered if my treatment might have taken a different course. I did have two lumps. But the sentinel node was positive, but the cancer cells were encapsulated. At the time my surgeon told me that she felt that they really needed to throw the book at my cancer, mainly because of my age. Overall, I am glad that I had the treatment, because I will never have to say to myself- "I should have." if it ever returns. I have also been struck with nights of terror from time to time, worrying that it might come back. Especially when I hear of someone that was a stage 2b that has had it come back.
Like many here, I also have been irritable and quick tempered with my family. And then there are the down days, when I just want to cry. For me it has been confusing, because I am so far out from treatment. I do think the tamoxifen wreaks havoc on our systems. I think it has affected the other medicines I take, and I have had so much pain and numbness in my hands and feet.
Well I have written quite a bit- I hope I haven't worn out my welcome!
0 -
hopefortomorow: As I have discovered about the women here, there is no wearing out of a welcome. There is so much understanding and caring. The women posting as well as those that simply read your words that don't post are helped knowing they are not alone. I was one of them. Be good to yourself. I too have to remind myself to look forward and not second guess decisions made along the way. Did I really need radiation? Why didn't I have both breasts removed? Are the side effects of this Tamoxifen worth it? I find it zaps my energy thinking about it because I tend to think about it alot (well, fatigue also happens to be a side effect of T as well). My goal is to begin to do things again that bring me joy (if I can remember what they are....another side effect).
Sillyness may be another one....Take good care of you.0 -
I asked myself that question out waking today. As you can see, I have an early stage CA with a good outcome, however, I do have some other health issues. I'm writing it off to post treatment let down. I also resigned my long-term job just one week before my diagnosis.
I think that having CA brings what we know, that we will all go sometime, right to the forefront. We're just arrogant enough to believe we will all live to be one hundred. I could get run over by a bus tomorrow but I don't sit around thinking about getting hit by a bus. I do catch myself sitting around thinking about what the radiation may have done to me, or what my AI may be doing to me, or if that mole was there before and if its "suspicious.". I feel out of control, which is ridiculous since we have no control when it comes right down to it.
I know that this will change with time and as I get my strength back, but in the meantime it's nice to know that I'm not the only out here that feels this way.
As for a Cancer Sucks shirt, sign me up. That's become my new motto!
0 -
I had one of those days today today. Started off feeling like I was 87% back to normal (except for exchange surgery planned for next week.) Had a few conversations where I thought- do I sound normal? do i sound too wound up? Do other people think I've changed? by the end of the day, I began to think, I can't do this. Suddenly stressed- when I go in for surgery Tuesday early, I guess i don't wear my wig, right? So I will go out for first time with scarf or nightcap or whatever. I'm sure they've seen it many times. but I hate it. I guess Rabbit 1 up above kind of nailed it. What happened?
Even after all the procedures are done for this cancer, I feel I will never be on top of things. Sorry for the gloom. Do I want wine or Ativan?? will it help me this afternoon?
0 -
hopefortomorrow, thanks for sharing your situation. I've had ladies tell me what they wouldn't give to not have their period anymore. I'm sure they may feel that way, but to have had it end so abruptly wasn't fun. I have a delicate chemical balance to begin with and would have hoped for a slower approach to menopause. I soooo get the "Quick Curl Barbie." I've never had curls in my life and this is some look. Wavy on the top and sides and curly in the back. It was strange going to my daughter's back to school night last night. A few ladies told me they loved my new haircut. I knew they were sincere and had no idea what I've been though. A few times I just said thanks and smiled, but one mom I knew a bit better (from 2 years ago) I said it wasn't by choice. She didn't seem to get it and didn't ask so that was that.
I agree with your never having to say "I should have" in regard to chemo. I'm trying to leave this whole idea of what should have or could have been behind. I think I just want to blame someone. I'm with you in regard to pain and discomfort. I never had more than a headache or a cold once in awhile and now I feel there is always something causing discomfort. I get it and I'm sure the other ladies do too.
lisa, 87% is pretty good. I think the best I've had was only 85% :-). Today was about 10% for me. I've been told we do get to some balanced place at some point. I'm guessing some get there sooner than others. Right now I saw it's taking way too long.
0 -
Rickymom, you are right, appreciate the good moments. As someone said on another thread, before this I had a cold every year or so and that was mostly it. This whole scene has been like going into another life.just realized that adjusting to Arimedex could be affecting mood swings (( been through menopause 6 yrs ago so I remember that) and I hope it will settle down.
I do wonder if I will ever feel,comfortable in my body and spirits again.0 -
Those moose swings are killers.
0 -
Hi all! Finished radiation a couple weeks ago and feel sad and more tired now than ever. I feel so guilty that I came through everything so well and I am still so unmotivated and sad. I should be taking my 10yr old to the beach but I snapped at her and cancelled the trip. I feel like I am on an emotional roller coaster. On a side note, my gyno and oncologist have suggested that I have a hysterectomy because of uterine cancer in my family. i feel like having another surgery like, never. I need to make a decision before the end of year because of insurance reasons. i hate that financial problems dictate so many of my health decisions. My husband and I have always had an awesome and active sex life and now I worry that its gonna change. I am also concerned about the tomoxifan i am now taking. So sorry for going on and on but it actually feels a bit better now that I have put my feelings out there.
0
