Why was I stronger DURING treatment than I am now?
Comments
-
RockyM -
Like you I excercise, and like you I have no stamina. What is that!? Some friends were going out for dinner last night, and they were meeting at 9, and I had to have a nap before I went out because that's almost my bed time. My energy comes in short little bursts and I don't really get tired, but my body gets weary. It's very frustrating - especially since I do my best to stay one top of things.
And as for the eyesight...I know from my experience, and from that of my friends (non-BC) that when eyesight goes, it goes sometime in your 40's, and virtually overnight. One day you're reading the back of the shampoo bottle, and the next day you can't even read the shopping list you wrote in an extra large font.
Last summer I was at a girl's weekend (all in our late 40's), and we got out a boardgame, and all sat there and stared at it. Nobody could read a thing. The hostess - bless her - managed to scrounge up a few pairs of reading glasses and the game carried on.
By the way - your quote about 'moving the ends' is one of my favorites. Not only does it apply to me almost every single day, but it also makes me laugh.
Janet
0 -
Janet, thanks. I saw a magnet with that saying last year just about the time that everything kept going wrong. I'd get good news... SNB was clear, then get bad news,... other nodes positive, etc. etc. Its still on my back door whiteboard as a reminder :-). I trimmed a huge ficus this morning and then was up on my roof trimming palm fronds. I was thinking that my left arm (more prone to LE) could swell since I don't have my sleeve yet. Looks like I may get lucky and just have to deal with a LE boob.
As for the eyesight.. really?? I thought it would be slow with some squinting and then little by little need glasses. Both my parents didn't get reading glasses until they were older (not exactly sure the age). It did seem almost overnight so maybe not the chemo. But I love to blame everything on chemo :-). I guess I should be happy that I am only using the 1.00 mag and only for small print. Your board game situation would have had me cracking up big time. None of us want to feel like we are getting older. I know I don't.
0 -
When I was small my grandmother used to swear at the publisher of our local paper. Seems they made the print smaller and blurier every day. Sadly I know just how she felt.
0 -
Hello Ladies,
I completed my treatment in April and had some physical issues with recovery. Like a lot of you, I too, have been on low enery and lack of interest in daily activities. I have feelings of sadness and think of my childhood events that were sad. I exercise and try and eat healthy most of the time. The tamoxiphen could be the reason for these "down" emotions that I feel. Just need to tell someone how I was feeling!! Thanks for listening.
0 -
It is odd, mamglam, how we can lose interest in life after fighting to survive. Very odd. Of course, I have had depression since 1979, so I guess it would be unreasonable to expect me to sustain an enthusiasm for life. Still, I am doing MUCH better than I was several months ago. I hope you feel better quickly.
0 -
yesterday I went to my MO and cried for 20 minutes and spilled my fears and all my mixed up feelings. Then I apologized for about 10 minutes. Why is it so hard to admit weakness? They listened and were very supportive and told me everything I was feeling was totally normal. I guess that helps, but I'm sadder today. I told them what frustrates me the most is that I truely don't understand all these feelings. They said that my life has changed forever and I have been a lot, and it will just take a while to adjust.
0 -
It does take a while to adjust to the "new normal." We just have to make our peace with it I suppose.
0 -
Thanks for the support dunesleeper. I do believe that Tamoxiphen is the reason for these changing emotions I have been feeling. I too, was feeling better (at least physically) but emotionally I am not. Currently, my family has not been able to support me as I am away (my husband's job). This may be the other reason for these lethargic feelings. With a life changing diagnosis like BC, I have become a different person with less tolerances. There is always the fear of reccurence or not having had enough treatment, which is also in my mind constantly. Exercise and self-guided meditation do help but these complicated feelings of sadness linger on.
0 -
Mamglam, sorry you are experiencing some sadness. I am sure it is because you are so far away from the rest of your family. Take care of yourself and let me know when you get home.
Joanne0 -
Thanks Joanne_53! Appreciate the support. Hope that all is well with you.
0 -
Ladies ... I hope you don't mind if I join you all on this discussion board, but reading all your posts tonight I feel much better than earlier today and I suddenly don't feel so alone. I finished my last radiation treatment on August 1st and suffered from severe fatigue for most of August and into the first part of September. My Honey and I ran away for 10 amazing days to Riviera Maya and for the first time in months life felt amazing. We could just be a couple again, be in love and be far away from breast cancer. We have been home now for a couple weeks and I just am feeling lost. I remained so positive from the minute I was diagnosed and throughout all my treatments. I also have really been thankful for the experience, it gave me an opportunity to spend quality time with my mom and sisters and was blessed every day with a man who was my rock and felt our love stronger than I ever thought was possible. But the last few days I just feel overwhelmed. Suddenly, I feel as if there are so many expectations of me to be back to my old self and should be doing things as I use to, to be the one that helps everyone out and keep everything organized and makes everyone feel good about things. I'm not ready to be that person again, because I am not that person right now. I want and still need time to learn who I am now and I just don't know how to make that clear to anyone. I can't find the words, but I know I can't let myself keep feeling this way and have to do something. What I want is some emotional healing time to be able to find me again, the new me, the me after cancer but all those that were my support don't seem to understand. I know expressing it here will help and I am hoping I can get some guidance as what to do or at least comfort knowing its ok to feel this way and especially I'm not alone with feeling this way. Thank you for letting me get it out!
0 -
Riverangel, I know exactly what you mean and how you feel. I was off work during my treatment and went back in September. It is great to be back to keep me busy but when I have time to think, that is when it hits. I feel like I am in a dream .... Almost slow motion sometimes. To my friends they might not notice that I am spending more time home alone ... It is sometimes easier to be home alone and not have to put on a brave face. Does any of this make sense?
0 -
Riverangel.....Your story could be mine, but the best thing that happened to me was getting back to work plus getting some medication for depression and anxiety. Not everyone needs medication, of course, but it changed my life. I find keeping busy the best medicine though. I do find however, I spend less and less time with friends and my comfort zone seems to be work and my neighborhood. I am working on that one. Joanne is right, it just seems easier sometimes to be alone so you don't have to put on a "brave face" . People on the "outside" will never get it....they think we are fine now that our treatment is over .....they don't know about our little "pill" and all the SE we get from that.....especially all the emotional stuff. I hope some of this makes sense also.
0 -
Joanne & Scottie ... All makes perfect sense! I have been on medication since my radiation because I was going through major anxiety then and that has helped tremendously! As far as work goes, I own a consulting company and have had a long lasting full time engagement in another state for 3 years, they were great to me during my treatments and continued to pay me, but right after they were over they ended my contract....long story, so I actually have the world at my feet and can decide what I want to do. I had wanted to end that prior to the cancer, I just wanted to do that on my terms. So everything I knew prior is different. I was so excited, but now my family's expectations seem to be taking over and I don't have the opportunity to just be alone and figure things out. I am excited to have a clean slate, I just need to be strong enough to say I need some space. I'm feeling suffocated! I am so glad to have gotten back on theses discussion boards though because I don't feel so alone and now I understand these feelings are somewhat normal! Thank you so much for the support and the outlet! Much appreciated!
0 -
Riverangel -
The only thing I know for certain is that you are not alone. The sequence sounds all too familiar. Positive, strong, thankful, blessed - then overwhelmed, confused, alone, and unsure of how to put the 'new you' into your old life, or if it's even possible. What used to be smooth sailing, (work, relationships, hobbies) become rough waters to navigate once treatment ends. Kind of like you're cast out of an environment that was safe and comfortable and then you realize that you've been rewired and your reactions have changed, expectations are different, and we surprise ourselves with our own emotions.
I'm a few months ahead of you, and I'm doing okay, but it was really rough. I distinctly remember going out for dinner with friends or family and feeling like I was in the wrong clothes, and in the wrong place. I couldn't relate to anything people were saying, and I'd even feel angry at the content of some conversations. One instance was when my sister-in-law was chatting about the size of her SUV, and musing about buying an additional car that was smaller for 'getting around the city'. I actually had to leave the room because I came so close to screaming 'Who the f*ck cares?!'
Now that my hair has grown back (I now look like Richard Simmons) the outside world thinks I'm 'back to normal'. Firstly, there is no 'back' to normal. It's 'forward' to a new normal. Friends seem relieved that I can go back to work, return to the gym, stay up past nine. But it's really not that simple. Some things are a real struggle. Sometimes I get overwhelmed in grocery stores, or I'm unbelievably impatient in day-to-day situations like a bank line-up or a conversation with a neighbor. Joanne has a point about being alone - sometimes it's easier. A relief, in fact, not to have to explain yourself, or answer the dreaded question - 'How ARE you?'. Of course you want to reassure everyone that you're fine - but that wouldn't be true.
Don't put any pressure on yourself to help people out, or be reassuring. Now is not the time for that. They can survive without your reassurance and organization until you feel stronger. It sounds as though people are used to you being helpful? Well - thye're going to have to get used to a different you. But first - you have to wait and see who that person is. I'm sure your friends have been supportive during your treatment, but you don't owe them anything right away, and right now you may not have anything to give. There's time to help them out later on, and reassure them, but right now you have to concentrate on yourself.
There's no easy way. For me - I had to ride it out. I went back to work two months after radiation and felt like a fish out of water. It was a good/bad thing for me, because nobody knew what I'd been through. My doctor prescribed anti-anxiety drugs but I didn't take them. They work for some - but I chose not to do it. I exercised, and walked my dog, and tried to learn to set boundaries as far was what I could realistically do - as well as what I wanted to do. I'm used to saying 'yes' if my friends asked me to join them for dinner but I had to stop and think ' Do I really want to sit in a crowded restaurant? Or, do I really want to baby-sit my sister's son, when I'd rather spend a few hours in teh garden? I'm a people-pleaser, by the way, so it's been challenging to say no to favours and invitations. I'm used to doing what is expected of me - but I can't function like that anymore, so that has slowly started to change. (It's damn hard!)
One of the girls on this thread wrote that 'she lost her inner warrior'. That's exactly how I felt. Not only did I lose my sword, but lost my purpose, and I lost familiarity with myself. Slowly it's coming back and I don't feel like a stranger anymore. To the outside world I'm fine. But to me, I'm slowly rebuilding, but I'm still a house of cards inside.
There are also support groups. Most cities have them, I think. But the one thing that seems to have worked for most of the women here, is time. You probably think you have no reason to feel this way, but in fact, you have every reason to feel this way. You've been through a lot, and others have likened the post-treament year to Post Traumatic Stress Disorder. You need time - lots of time - to readjust.
I went to a seminar two nights ago for breast reconstruction (my next challenge). Well, I was in a room with 200 cancer chicks and I felt SO at home. I was amongst my people! I didn't know how good it would feel to not have to do any posturing, and I knew that if I did start crying, nobody would ask me why. They'd just put a hand on my back.
I should add - that the evening turned to be a whole lot of fun - and informative. I brought my partner and he found it immensly helpful to have the process demystified.
I"m really glad that your husband is a rock. My partner has been amazing - but he admits that he finds this stretch harder than chemo and radiation. He knows things are different, and he doesn't know what to do because his role is no longer defined. It was easy for him to drive me to appointments, and tuck me into bed - but he doesn't know what to do when he sees me crying for no reason. Keep your partner in the loop. Let him know that this a a difficult time, and very real. But don't let your partners needs outweigh your own. You still have a lot of healing to do.
I wish you all the best - it will get easier,
Janet
0 -
Janet- I know that posting was directed at Riverangel, but I just wanted to thank you for what you wrote. It resonated so much with me and what I am now struggling with as a "survivor," especially the part about always being a people pleaser and learning to say no. Thank you for writing exactly what I needed to hear at this moment...something that even the most well-intentioned around me don't really get.
0 -
Hi all...just had to jump in with my two-cents. Riverangel...you have come to the right place. I encourage you to share how you are feeling with your husband. It sounds like he is very supportive, as was my husband while I was going through treatment, but he had no idea what I was going through after treatment ended. I hid it very well (not exactly the best thing to do in a marriage) and when I finally broke down to him, his jaw dropped to the ground. He had absolutely no idea that I was feeling so miserable. We have since had several opportunities to share with people that "when it's over, it's not really over". It is counter-intuitive, but true.
It is good to hear from everyone. Joanne and Scottie...being alone and not having to put on that brave face is sometimes easier for me, too. Although I also find that I can go to a pretty dark place when I am alone with my thoughts. Maybe keeping busy is the answer.
Janet...so good to hear that the reconstruction meeting was good. What a great post in every way! It was right on the money. Like CJRT, your words resonated with me. It is so helpful to know that we are all understood. I was doing great there for awhile and then I took some steps backward and am still not where I would like to be. I think you are right...it takes time. Unfortunately, I am impatient. I probably need to work on that.
I hope everyone has a good weekend.
Rabbit
0 -
CJRT -
You are so welcome! I think a big first step is recognizing you're a people pleaser - and that it's not a good thing. Today I heard something on the radio discussing a 'happiness survey', and the happiest people are also the most selfish ones; those who don't suffer any guilt. It's a long road for us people pleasers....baby steps all the way.
Rabbit -
Hi! Always so great to hear from you. You were the first post I read, when you started this thread, and I just love the difference in your writing. You just sound calmer, regardless of the fact that you occasionally take a few steps back. I still don't know how you do it with a houseful of kids. I'm not where I want to be either, but I've stopped being so anxious about trying to define my destination.
However, I did have a little mini meltdown tonight (no reason, don't need one) so my girlfriend zipped over and took me to a French movie. God, I love my girlfriends.
Have a great weekend everyone,
Janet
0 -
Hi Janet...thank you for your kind words. My calmness is relative. One minute's calmness leads to another minute's hysteria...ha, ha! I hope you enjoyed the French movie. It sounds like you have great friends. And remember your tagline...your meltdown tonight might just mean you are coping! Cheers to you!
0 -
Ladies...Thank you! Janet...wow that's it exactly and I am so thankful for you! Rabbit...I do feel I came to the right place. I started to tell my husband last night and the interesting thing is he said he knew something was going on. I wasn't able to articulate it quite yet, but as through everything he was patient and reassured me that for me to be healed completely I have to do what is right me and I have to what I usually do for others for myself. So I'm going to try really hard to do that and not be so hard on me too!
I am just glad I reached out its comforting to know I am not alone and I have a new set of Angels to guide me through! Thank you again!0 -
This is definitely a process with steps forward at times and slips backwards at times. I am taking a mindfulness stress reduction class that is really helping me stay in the present and pay attention to how I feel physically and emotionally without judgment. It is hard sometimes but I am feeling like it helps and I am actually enjoying the life that I worked so hard to save. I do some yoga and meditation each day as well. Sending hugs to everyone tonight!
0 -
I am 2 months away from the 2nd anniversary of my initial surgery. Surgery was a breeze, as was radiation, but chemo was really tough on me. And I found that when you're worn down, for whatever reason, you become more fragile emotionally. I remember many tearful sessions with my husband, saying that it wasn't worth it. Now, months later, I know it was worth it.
I admit I still have my down moments, and if you see me my stats below, I think they are moments when I recall my reality. However, as a consequence I squeeze every possible "goodie" out of each day ...yesterday I stood for 5 minutes inside my garden shed, looking out at the trees swaying and dropping leaves in a sudden rainstorm.. Ginger48, I think that's where your mindfulness comes in, staying in the present. Because to do otherwise gets us nowhere. So for those of you who feel tired and low, it will get better as you gain strength. And if you still feel low, see your doctor an ask your doctor for a referral to a psychiatrist... just as you wouldn't see a GP to treat your bc, I think you need a psychiatrist, skilled in depression meds and knowledgeable of interactions with other meds, to treat you...
Good luck to all of you...0 -
It looks like I've found the thread I needed... I just finished radiation this past Thursday and my 'only' treatments left are herceptin every 3 weeks until June and tamoxifen for 5 years. My emotions are a mess and I feel like one second I can cope and the very next second I'm in tears and afraid. I made it through chemo and most of radiation with that 'can do' attitude and everyone, including myself, was so impressed with how well I dealt with it all and how strong and 'normal' I was - with continuing to work most of my full time hours and doing everything I could to keep things normal for my teenage children. Not once did I ever think I wouldn't survive this and not once did I ever let on to my family that I had any doubts. However... now I am scared, I am unsure whether I can get through all these feelings, and why 'fight' only to have it possibly come back. I spend so much time looking for answers or guarantees as to whether I can really say that this cancer was a one-time deal and now it's done. I want to stop the herceptin, stop the tamoxifen (I hate the idea of taking a pill for 5 years and am wondering if some of this emotional stuff is the tamoxifen talking), and say I'm done and move on like it never happened. I guess all of this is normal from what I'm reading here, but the reality of it is hell, and so hard to share with others. Like many of you have said, you finish the treatments and everyone is saying "oh, you must be excited..." but in reality I'm scared, I'm drained, I'm sore, I'm tired, and I don't know who I am right now.
0 -
mbf, welcome to the "I'm as tough as hell, so what the heck is going on" thread :-). It's been about 6 months since we all stated to talk about this. Many of us have been able to climb out of our hole (so to speak). Just know that what you are going though is normal. As my father always said, "this too shall pass" and it does. I can't tell you how to heal yourself as you probably know best in that area. For me, I was at the gym almost every day and getting mini therapy sessions from any of my friends who I felt I could talk with about this. Heck I even had regular therapy too now that I think about it. Each of us has our own way to heal.
Unfortunarly, I think the tired and sore sick around for a bit and we just have to get used to it. I'm only 48 next week and I'm hoping the body issue will pass. Herceptin is probably a must for you, but I opted out of Tamoxifin for now. Of course, now that I am considered post menopause I suppose I would be on Arimidex, but either way... I still need to get "me" back before any further treatment.
0 -
Thanks Rockym. I know that things will get better with time, but I'm not the most patient person. That combined with the fact that I like to feel like I'm in control... well, this is certainly a time where I don't feel in control of much, certainly not my own body! The weight gain, the hair, the eyelashes that JUST fell out last week (8 wks post last chemo)!), the chemo brain...well, why am telling you - you certainly know! Anyway, I am only 45 (well, 46 next month) and did not expect menopause so early. Did you go into menopause from chemo too? If you don't mind me asking, was the doctor fine with you opting out of tamoxifen?
0 -
Riverangel...I'm so glad you talked to your husband. He sounds great and you sound grateful for him. Janet had a good point in an earlier post that our "rocks" know just what to do when we are going through treatment because it is the obvious stuff (grocery shop, laundry, house stuff, kids' stuff, etc.) but it's less obvious what we need when treatment is done. I think communication is the key.
Ginger and Evergreen...you both sound like you are doing so well. I agree that staying in the present is important. I am the queen of "what ifs" but you have a good point, Evergreen, they get us nowhere. I keep wanting to know how this story is going to end, but unfortunately, noone can tell me! I guess the lesson is to just do what we can to maintain our health and deal with things as they come.
mbf...welcome. I bet there are a lot of factors causing how you are feeling right now. Tamoxifen probably plays a role too, but I think the side effects have improved for me as time has gone on, or maybe they have just become more tolerable. I was 43 at diagnosis (44 now). Chemo. threw me into menopause and I haven't come out because of the tamoxifen. My doctors have told me I will probably come out of menopause and then go back into it. Fun, fun fun! I hope that info. helps.
Rockym...what a great post in every way. I love it when you chime in! You always make great points.
Question of the day for everyone...I need some help/advice. Do you ladies look at many of the topics on this site? I have found lately that I look at the active threads and read many of them. I am drawn to the "not diagnosed, but worried" or "newly diagnosed" or "recurrence" forums, but they tend to scare the he## out of me. Does anyone else do that, or am I alone? I suppose the obvious answer is to stop looking at those forums, but it is hard for me. When I read about someone going through the anxiety, fear, etc. that we have all felt, it makes me so sad. Can anyone relate? What do you do? I don't have that feeling when I read the posts here, probably because I can relate so well to what everyone on here is feeling. Maybe I need a vacation from some of the other discussion boards...
Rabbit43
0 -
mbf, when I was going through the rough times, I was very impatient too. I know my body chemistry is such that when things are rough, I have to ride it out and then magically I will wake up one morning and poof, everything is better. It is the strangest sensation and I've had it happen so many times before that I am used to it. However, this was the toughest down I ever dealt with, but low and behold... I woke up in that last week of August and all was better. Just so you know... most of us lost our lashes 8 weeks post chemo. They do come back pretty quick, but oh do I know how much a son of a bitch that was. There I was freshly out of chemo thinking just a little rads and all will be done and then bam! Thin eyebrows and not enough lashes for mascara. Most of us at that stage were like who the f--k cares about our hair... we just want our faces back. Well, my face is back and once again all is well.
My last period was October 2011 from chemo. It was a very stange experience and my best friend was there so we have the hilarious memory. I started peri-menopause at 43, so my guess was that I would have been there around 50 anyway so I suppose 47 wasn't that bad.
As for Tamoxifin, my doctor really didn't have a say in stopping it. If you were to read back to May and perhaps June of this thread, I was so flipped out and the estrogen blocker was too much to deal with. I stopped on my own. I talked to my MO after the fact and he was fine with it. He told me I could start up at anytime in the future if I wanted to. He said I wouldn't have the same protection as if I started right away, but that it was up to me. Between surgery, chemo and rads I feel covered and I don't live in fear of recurrence so I'm good for now.
Rabbit, I have a few favorites that I follow and I do peek at the active threads too. The not dxed don't interest me much, the newly dxed have interesting stories that I will sometimes comment on if I feel I can be of help. The recurrence and stage IV I stay the heck away from. I do not want to jinx myself and I do want to move on so I try to stick with those in the same boat for support. If you feel the need for tears, go watch Beaches or Terms of Endearment. Safer for your head :-).
0 -
I agree with Rocky. I tend to mostly read the threads that I can identify with at this point. Once in a while I will take a look at the active topics but not too often. I am really trying to live in the present and let the past go. I try to stay positive as much as possible and not let my mind "go to the dark side".
0 -
I pretty much limit my focus to Fuzzy's Romp Room. I like the ladies there. They tend to be very positive and funny. Of course, sometimes stuff happens that they need to share, but everyone gathers round them and encourages them. It's a fun room.
You know, I did alternative treatment. A really sad thing about this site is that you can't even go to an alternative treatment thread and be safe from conventional treatment people who feel it is their god-given duty to intrude and tell us how we are all going to die because we aren't doing things their way. Fights always break out on those threads. So I really have no place to go for support -- except Fuzzy's Romp Room. Everyone is accepting there, even though I am probably the only one who declined conventional treatment.
0 -
Hi Rabbit43, the chemo did throw me into menopause and my MO said the tamoxifen would most likely keep me in it/push me through it. I'm sure that when I 'get to the other side' of it I'll feel better, but right now it's so much to deal with after going through the treatments and still needing the herceptin. When I look at that little white pill I think "I hate you - you're the reason I can't lose weight now, the reason I ache, the reason I have such mood swings..." I realize I need to switch those thoughts to "Wow, I'm lucky I have you to help keep me from getting this cancer again!"
Rockym, you're right - I just want my face back. My eyebrows are coming back in, but darker and with some gray I think. My hair is looking like it's much darker with lots of gray too (I was kind of a dark blond before all this). I have gone from looking younger than my age to looking much older than my age. Oh well, just need to be thankful for the positive now
Anyway, I'm so torn about the tamoxifen and wish I could come up with exactly how much it really helps reduce the recurrence in percentage. I know my MO said it reduces it by 40-50%, but that's from whatever my chance of recurrence given chemo, rads, and herceptin is. So for all I know my chance could just go from 10% to 6% for instance. I wish I could find out. I know my husband would not be supportive of my stopping it - I feel like I'm just taking it for my kids and family and if it weren't for them I would be done with it and trying to put all of this cancer thing behind me. I don't know, maybe I just haven't faced the fact that I had cancer - maybe I'm in denial and if I don't have to continue with the tamoxifen and herceptin I can move away from it all... has anyone else felt that way?0
