Why was I stronger DURING treatment than I am now?
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Rockym, I think it's part of being human to try to "put the pieces together" we look for explanations for the unexplainable and aren't satisfied with "sometimes stuff happens" Every culture has it myths and legends to explain why things are the way the are, and I think we, as bc patients, create our own mythology to explain why this terrible disease happened to us, why the treatment was the right choice, or was not... "I got cancer because my Dad was a smoker" or because I drank water out of plastic bottles, or took birth control...
"my treatment was right/wrong because..."
And this is while we are "cancer free" God help us if we reoccur. My Aunt had cancer and she was convinced that it all started 17 years before dx when she got hit in the chest by a baseball. Maybe she was right, but then again...
Anyway, I don't think anyone quits looking for answers, until the find answers that satisfy their need for an explanation, even if they settle on galacticly bad karma or some such.
FWIW I don't think you are particularly messed up at all.
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Cindyl, thanks so much for the reply and the "FWIW" :-). I keep trying to have faith and know that things happen for reasons. I also always have been able to see the silver lining in many rotten situations, but having never been physically sick (other than a cold) finding some cool and comfortable explanation isn't working yet. Maybe that is why my mind is playing these cruel tricks. I do feel fortunate that I know it's my brain working through stuff and I'm glad I have the ability to step outside myself and see it for that, but all I can still say is NOT FAIR!
I do believe that things will make more sense in time and I am truly thankful that I never felt I gave myself cancer. I think my chances in the entire population were 1% with no family history, having children, breast feeding, no HR, not a lot of alcohol, etc. etc. I think the only thing that ever fit was that I got my period at 11. Cancer for an early puberty... nah. Anyway, I know many ladies get into that frame of mind too and think their stress and such did it. I want to feel emotionally healthy again. Hopefully soon :-).
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Hi Rockym: I'm not the one to help you or give you advice at the moment because I just finished rads and I am at the point "ok what now, yikes, who is taking care of me now" BUT Cindyl is right and Inhad a good friend talk to me about this.....STOP trying to analyze what you did, how you got it, was it my fault? did I do the right thing in terms of treatment.....we will never know.....we need to save our energy and "minds" for other things ie children,husbands,OURSELVES ie healing. I know these all sound like cliches
But I have been down your road re "how did this happen" thankfully, it's the one thing
that I have managed to put to rest" it's wasted energy and God knows we need to preserve our energy for as you said "getting emotionally healthy" This is my prayer for all of us.0 -
RockyM -
Firstly, I am a former warrior who has lost her sword and is now trying to find her way. After having read these boards, and talking to former cancer patients, I don't think you're messed up at all. Everything is so different, and so hard, and I'm really sorry you're having a rough time.
I can relate to your mind playing tricks on you regarding your treatment. I made it through all the physical stuff like a trouper, but now I'm being hit by another wave that I can't quite figure out. Sometimes I'll just be driving, and scenarios will come back to me of things that happened during the last year, and I almost want to drive off the road. For instance - why did I not meet my rad doc until the end of the chemo treatment. It's started to bother me that the 'team' they talked about didn't really exist, and my surgeon wanted to keep her out of the picture so that my treatment was surgery based. Not to mention, that in retrospect - it was nearly impossible to keep up with all the information, and appointments, and make a rational and non-fear based decision. In fact it was impossible. I don't feel like I will ever have adequate knowledge about cancer, and treatments.
There are other things as well. Sometimes I feel muddled, and my body feels like it's 150. Sometimes I can accept that as part of a process, and other times I feel really f*cking ripped off, and completely robbed of the things that I cherish - such as a sharp mind and drug free body.
You said that you like your BS - yet your mind is letting you think that he may have had something to do with the pathology report? Well, why don't you start with the fact that you like him - and give him a call. Ask him how you got from point A to where you are now - and why you had the treatment you did. I sounds as though it's important to you to navigate your route, and maybe he will help you with the map.
Possibly you were over-treated. Possibly we all are, but you can't change the past. My nurse really threw me for a loop once. He came to give me my neulasta shot and remarked how well I was doing during chemo. Then - he said that it was because I never really needed it in the first place. After that I stayed away from his opinions (he had a lot) because he was just feeding my neurosis. And like you - I've always been drug free, so I had a hard time reconciling to the fact that I was being pumped full of chemicals.
You also said that you feel guilty about your family. That's a hell of big burden to live with! Are your kids doing okay? Just the fact that your concerned about your family, and healthy, and present, already makes you a good parent. Kids got through a lot of stuff. My father travelled a lot when I was little, and ill when I was in my teens. I have all those memories somewhere, but mostly I just remember being loved.
Please let yourself off the hook about those things which weren't your fault. You've done nothing wrong.
Just know that you're not crazy, and your not alone. Most post-treatment girls I know are barely coping, and when people remark 'Oh, Janet's doing great' - little do they know that I'm just faking it.
Janet
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Well yes. If we weren't going to reoccur, or (especially for those who are dcis or lcis only) if the cancer wasn't going to become invasive... we were over treated. But for people treated aggressively from the get go there's just no way to know what would have happened if we'd just done the watchful waiting thing. Of course I have a little different perspective than some. I found my lump in August 2010. Went to the pcp, got right in for a mammogram and an us, and was told "nothing to worry about. Scar tissue." we'll check it at your next mammogram, but don't worry, it's nothing. So away I went, off to live my life in blissful ignorance, never really thought about it again. Yeah the lump was still there, but it didn't seem to change much so...
In Feb. 2012 I went to my pcp for a pre-surgery check up before eye surgery and she mentioned I was over due for a mammogram. "you were supposed to follow up in 6 months." No one told me this! But still I wasn't too worried. It's scar tissue, for heavens sake. So I went off for a mammogram, ultrasound, biopsy, and cancer dx. IDC in a bed of DCIS. And the roller coaster ride began. I certainly don't feel like I was over treated in the beginning and I'm d*mn p*ss*d about it actually. If they'd done a lx back in 2010 it certainly would have been smaller and who knows what other differences there might be. If I end up stage IV (unlikely with my stage and grade I know) I will always blame the under-treatment at the beginning. Fair? Maybe not. But that's the way it is for me.
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Once again I am thankful to have a found this site. I have been feeling like so many of you other ladies so I'm relieved I'm not losing my mind. I still feel like I'm living in a freaking nightmare and wonder when it will be over. Like so many I handled treatment with ease and very little side effects but trying to find my new normal is proving rather diffucult. I find myself constantly worrying about the cancer coming back or worse yet spreading. I'm mad because I put myself in this position by putting off my mammo for no particular reason. My family/friends seem to think that since treatment is over all is good in my body...if only they knew or understood how my days really go. I'm so sick of hot flashes and sweating at night and trying to figure out when a pain is just a pain. So thank you all for posting and letting me know once again that everything I'm feeling is really quite normal and that it just takes time to get to a better place.
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Hi Rabbit, just like to many other your freinds here, it sounds very normal to me too. I was diagnosed in Jan 10 and it's been little over 2 yrs now. I still remember vividly the momnet that I felt like the whole world stopped moving like in the movie, when my doctor told me the unbelivable news. And as I was walking out of her office, it didn't seem real at all to me.
I was very upset at first thinking why me? and then a little later I felt guilty for not taking care of my body.. I worked very hard for many years, didnt' eat healthy, didnt' excercise, didnt' sleep well. Then soon the treatment started. I had to be in fight-mode like everyone else. Unfortuantely I had 3 lumpectomies, and it was very difficult both physically and emotionally. Then 8 rounds of chemo.. then 6 wks of rads ended right before Christmas. I was very strong through out the whole treatment period. I returned to work in Jan 11, after 6 mo's of absence. I was happy that I was back to normal life, but soon after I realized that it wasn't the same as before. My hair started growing back and slowly everything was coming back to normal, but I knew it would never be the same again..
Well, we only can do what we can do, and we only can change our future not the past. I try to not get too emotional. Instead, try to compliment and treat myself well with any small things in my daily life. It helps me to stay positive everyday. I didn't come to this site for a while, wanting to forget that I had bc. But today something led me to this post. I hope sharing my story makes my other bc sisters that they are not alone in this lonely journey.
Love, Jen
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Scottie, thanks for your post. Today was a better day. My mind thought about one of those "what if" stories for a little bit, but then I stopped. I keep trying to turn the story in my head back to the "I had treatment that saved me, etc." I also try to look in the mirror and smile and compliment myself on my "new" hair style. I had long hair all my life and my new 3" of wavy hair is hard reconcile sometimes. I'm hoping some positive energy comes my way soon :-).
Janet, So many of us are dealing with either emotional troubles or physical troubles and it can be overwhelming. I've heard that many of us get hit hard after treatment is done. It's probably the fight or flight response where we did the fight and now our bodies are toast. I've had a few friends lately mention the "driving off the road" feeling. These ladies hadn't even gone though what we have so yes, this happens. I do get a bit paranoid (for lack of a better word) that my original pathology report was modified. There is more of me that knows that this can't be true and like I mentioned above, the pathology is also what could have saved me. In the end, I'm just frustrated as many of us are. Feeling ripped off is a good way to say it. I used to be able to read 2 books at a time and now I can only concentrate for short periods and a book is the last thing I want to go near. Of course my poor "sharp mind" is what has messed with me for the past few months. I get what you're saying.
I've spoke with my BS about a few things, but I am the one who called a lot of the shots. I was thinking surgery, possibly brachy and then I'd be done. There were some complications after my surgery where I had to go back when a bleed started a day later. When I came out of surgery the first time he informed me that the SN was negative and I was thrilled. It wasn't until the surgery the next day and then a few days later when the final path came in with micromets in 2 lymph nodes. I know he didn't do anything to change the outcome of that report, but like I mentioned my mind wants to play games. I had a onocotype test that came back 22 and felt with 2 positive nodes I would have to lean on the safe side. I even sent my pathology to a very reputable hospital last year for a second opinion because the path report was poorly worded and bothered me. Anyway, you are right in that we can't change the past. By the way, eff that nurse who made that comment to you. I did chemo very well and some of us who go into this crap very healthy handle the poison well
My kids had a rough year. I'm usually the strong one who handles everything in the family and they have seen me in so many emotional states. I haven't flipped out in front of them (I waited until they were in school) and if something was really tough, I'd cry in my closet. They have seen me cry often and then I usually talk to them about it. I want them to know why I'm upset and also let them understand some of the emotions such as my hair, my fatigue, etc. They do get it, but they also have their own struggles and my guilt just hangs around. I don't have the same enjoyment of life right now and it goes back to the saying "If mom isn't happy, nobody is happy." They are a little stronger then that, but the feelings are still there.
Here's to continuing to fake it until we don't have to! :-)0 -
Hi all...I have been reading these latest posts with interest and am once again amazed at the sentiments I read on here because I feel like everyone really gets it. That is very helpful.
Jen...thank you for sharing your story. Hearing from someone who is 2 years out and has such a positive attitude makes me think there is a light at the end of the tunnel. I am coming up on the one year anniversary of my diagnosis and am extremely emotional. I actually thought I was doing better there for awhile, but now I find myself falling apart when I go to the places I went last summer and I so vividly remember every detail of absolutely everything. It is all coming right to the forefront of my mind and it is horrible because I remember it all so clearly. I wish my mind was as sharp with other things!
Rocky...you are not messed up. Our stories are scarily similar, down to our oncotype scores, "handle everything" attitude, and concern about the effect all of this has had on our kids. I loved your last line about continuing to fake it until we don't have to. I can't wait until that day and I do think it will come eventually. I hope it comes sooner rather than later because as a pretty big control freak, I don't like to feel so out of control!
To those that are wondering if they were overtreated, I totally understand and want to share something that my bs told me. He said doing chemo. was like insurance. When you buy it, you don't know if you really need it now, or ever will in the future. I know that it was a lot for us to go through, but I try to remind myself that I wanted to do everything possible to ensure that this beast never rears its ugly head again. I always figured it was safest to do everything asked of me because then I couldn't look back and say I wish I had done more.
And as far as trying to figure out how we got bc, I have been doing that since day one. My surgeon told me it was probably the perfect storm of factors that caused it, but that doesn't stop me from blaming myself or wondering if I was being punished...now that is truly messed up.
Tonight, I pray that we all find peace in our hearts, because we definitely deserve it.
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Rabbit, I don't see your dx in your post, but I just realized you started this thread. This was definitely a good one. My emotions have been so off balance since treatment ended. I'm not sure if the chemicals in chemo changed things or the fact that I look so different to myself. I even had to move some family photos out of view because they were hurting my heart. We took some pics on mother's day this year and I put those out. At least I look more like the recent photo and I don't tend to stare at it and feel bad. I do try to take some control if possible :-).
The insurance thoughts your BS mentioned are good, but what messes with me is that from the time I found out I had cancer, I was never scared and never felt in danger. My mind back then was more like, take it out, do some quick rads and get on with my life. Now of course I should try to keep in mind that IF there was a floating cell, it was caught before it became mets. I also SHOULD keep in mind that regardless of the chemo and rads, I am currently not able to take Tamoxifen and therefore, should be very happy I was able to at least have done the other two to cover myself.
See... all logical thinking, but emotionally... toast :-). I tried Tamoxifen about a month after rads finished and being that I was already down in the dumps, the Tamox took me to the scariest place I'd even been. I later read that those thoughts can be a side effect, but you really don't hear about it. I think it even scared my MO, because he said, "Well, it's good you stopped and maybe we'll try something else in a few months." He didn't really seem to care about my emotional state and said I needed to talk to someone else about that.
I'm not sure if anyone else feels this way, but I really feel uncared for. MY BS and RO are decent guys, but they aren't shrinks. My previous shrink, who was around for the past 10 years, moved out of state about 1 month after my dx. I found a new one, but she is more about asking me "what I want to do" in regards to meds and I don't have a lot of faith in her. A few months back she kept telling me benzos (lorazepam and Valium) were just fine to take when you felt like it. Never did she mention physical or psychological dependence. She also brought up the idea of different things for sleep, but they were anti-psychotics. My guess is she really has no idea about true pharmacology and I'm glad I knew about the drugs she was ready to write a script for. Breast cancer patient is now in abrupt menopause, has trouble sleeping through the night and is a bit depressed (depending on the day) so that makes one psychotic... really?
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Hi Rocky. Actually, the anti psychotic does help you sleep, and it is not addictive. I prefer Xanax because it calms me, but gradually you need to take more and more to have the same effect. When I quit work the end of this month I am going to get off my sleep meds. Oh, was the antipsychotic called seroquel? That's one they gave me. Generally I am not psychotic, lol, but these past couple of months I have not been doing well. For sure!
I know a lot of you ladies have wondered about your treatments as being a cause of your emotional distress after treatment. I just want to put out there that I opted out of chemo and rads, and the same thing happened to me. I held it together for the diagnosis and surgery and recovery. Then, when most of the doc appointments were done and I was expected to go back to normal life, I went to pieces. I really think it is post traumatic stress disorder.
I don't know if that helps, but I'm pretty convinced it is the cause. I think we keep it together throughout treatment, looking to the next treatment or the next appointment or the next test. Then, kind of like when it is safe to go to pieces, we do. I have a long history of depression, but I handled everything like a trooper, until everything settled down. Then, oh boy! There's a bridge called the Key Bridge just a few miles away. It is named after Francis Scott Key. It's a very high suspension bridge. That damned bridge has been calling my name. Not so much the past few days, but it scares the crapola out of me. Then I feel such guilt for wanting to die when we have all fought to save our lives. It is just crazy, but I swear it is PTSD.
Oh yeah, and just an aside about our lovely conventional medical treatment. I had my 3 month follow up with the surgeon. She dismissed me. She simply said since I did not want mammograms, there was no sense in scheduling a follow up. I was too astonished to point out that there is still ultrasound and themography. But since I have chosen treatment through nutrition, supplementation, and avoidance of radiation and other toxins, she would not even let me make an appt for a year out. Nope. No appts at all. No wonder there are so few statistics out there comparing women who choose conventional treatments with those who choose alternative treatment.
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dunesleeper, I was taking Ativan for a bit to help with the anxiety and thoughts, but I did end up needing more and then for sleep it wasn't lasting long enough. For me it made sense to just get off the stuff or get to the minimal amount possible. All those benzos are very physically and psychologically addicting. I was a mess as I tapered down a bit too fast and I had only been taking them for 6 months. I wasn't even taking that much each day, but my body got very used to it.
Could your distress be because you didn't do the standard treatment? Maybe somewhere deep in your mind that is messing with you. I looked up PTSD for myself and it didn't really fit. I wish I could just call my situation depression as I do have most of the symptoms, but my symptoms also fit the grief and loss situation too. Medication scares me since for my body it can do more harm sometimes. I do understand you opting out of chemo and rads for that reason. Choosing chemo and rads was tough, but I guess since I'm now not on Tamox maybe it was a good choice. Who knows.
I posted something similar about dying in another thread somewhere. I said just what you did. We took care of ourselves to save our lives and then we don't feel like living. It is a very painful thing. I suppose if we just take it one day at a time (as they say), things will get better. The body and mind is very powerful and is good at healing itself, but it's frustrating when it takes so long.
Sorry about your doctor. Perhaps you can find someone who would be willing to just do the ultrasounds. The doctors are trying to cover themselves to the point that if you don't do what they want, there really isn't a relationship. I'm sure you could find someone else or have a long talk with her if you like her and come up with a game plan. Good luck. I hope things work out for all of us.
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Rocky and all, no matter what disease you have, we are always stuck with imperfect decisions and medicine tomorrow will know more than medicine today. You have to do the best you can with what info you have and then move on. Stop yourself when you have those thoughts and move on to something else to occupy your mind. I know, I have been similar all my life. I catch myself playing out in my head a whole scenario of bad events, almost like I'm writing a movie script! I have kind of learned to stop that and write the script to something positive. After all, at this point both are fantasy, so go with the happier one!
And Jen don't beat yourself up about not taking care of yourself. I feel like I did a pretty good job taking care of myself and I got cancer anyway.
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I try very hard to switch to the "I saved my life" with my treatment scenario, but I never thought it would be this tough or I'd even be in this place so many months later. I was sitting in a movie today and had to walk out for a few minutes because I started to have a mini anxiety attack. I keep thinking if I let my BS call more of the shots, etc. I would have not ended up with chemo and my life would have been very different.
The more sane side of me says that if I let someone else call the shots (I've always been a researcher and self-advocate for myself) I could have been in this same place too and maybe more angry that I didn't take part in more of the decisions. See, either way it doesn't work so you'd think this obsessing, etc. would stop... obviously not yet :-).
I hope someone who has been in this "head" reads this and says things are going to get better soon.
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The one thing I do feel confident in is my choice of alternative treatment. I only wish I had not had the surgery, or at least have had the opportunity to choose surgery or alternative. No. I am upset about how my whole life has changed and continues to change. Besides the change in diet and the exercise I should be doing, there is the MLD, LE, stretching, inability to lift weights with my upper body, constant pain/pressure from the TE, and complete change in my financial situation. I found I could not take proper care of myself while working my job so I am leaving it == and I will be very very poor and dependent on my mother to help me make it through at least the next three months while waiting for disability retirement determination. Then, if they turn me down it drags out longer. Meanwhile, my early retirement pay will not bring in enough to pay my basic bills. So this makes me a basket case. However, before I decided to retire, trying to work made me a basket case. Actually, it still does. I really need July 1 to get here so my new job will be taking care of myself: nutrition, exercise, relaxation, socialization, support groups, whatever it takes.
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RockM - I can relate to the 'who's taking care of me' scenrario. I went to a psychiatry appointment last week and I actually enjoyed being back the hopital setting. It felt very comfortable, as opposed to being back at work, where I am constantly faking it. Faking being intertested, faking being cheerful, faking being me.
I talked with the pyschistrist for about an hour after which she said 'what do you want out of these sessions' but I didn't really know. But what I came up with is that I want to feel safe again. And I want to feel in control, and I want to stop thinking about my upcoming operation, and obsessing about the small things. I jsut want a little peace. I take 1/2 an Ataivin occassionally when I can't sleep - and it's often the high point of my day. Just a few moment where my brain and my stomach can take a break from worry and anticipation. If it wasn't so addictive - i'd be taking it more often. (If it was organic, I'd be taking it all the time)
If I have concerns about my health - I don't know who to call. I wish there was one doctor who was available for everything, rather than having to go through someone's secretary to talk to a particular specialist who may give you an appointment in a week. It's a lonely road. Most conversatons end wtih 'you should probably be talking to so & so...
Anyway, my psychiatrist thinks that I'm a worrier ( no kidding) and that I have anxiety (obviously). She gave me the name of an interactive text about anxitey - in other words, she gave me homework. As one of my concerns is my lack of time, this didn't make me feel any better. I don't want any more work. Sigh.
But work I must. This is going to be a long road......
Janet
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Hi Janet. I see my therapist for the 2nd time tomorrow. I guess he is all I have, well, except for any of you ladies who are up to responding to my crying. My mom obviously cannot deal with my emotions. She just tells me I have to stop getting upset, that it isn't helping me. LOL. Duh. Ya think so? Well then. Snap my fingers, no more upset. Hmmm. That didn't work. I hope and pray that I will feel better once work is over. Then I guess I'll "just" stress about money and whether or not I will qualify for disability retirement. I am so tired of my stomach being in knots and the damned crying. I'm tired of being weak. I'm going to hang on a bit longer though. I'm going to see if I can feel better after I stop work. I'm going to need to save some therapy sessions for then so that he can help motivate me to get out of bed and DO WHAT I NEED TO BE DOING. This is bloody crazy!
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Hi Dunesleeper: This sounds like a cliche but I can honestly and trully feel your pain. I have been following your posts and I cry when I read them, I wish I could be there with you...not sure what I could do but give you a hug and just listen. Please give the therapy
a chance, if you can afford it . I don't know how things work in the States (I'm in Canada)
Always know however, you can vent, scream, cry, whatever helps right here. I for one
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Wow Scottiee. Thank you so much. I am going to get better. I swear it. I will post then, too. I'll be there for someone else who is struggling.
I get 10 free therapy sessions from my work, and the therapist actually said he would see me for free if need be. I will space them out as best I can.
((( Scottiee )))
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Janet, I feel like I'm in this alone (except for all of you on BCO :-)). What you said to the psychiatrist was fabulous. Feeling safe again. For me it's feeling happy and normal. My problem is that I obsess over things that are done. Things I can't change. I never felt like my cancer was a real threat, yet I went ahead with some heavy treatment. I never even had a clue that my psych. chemistry would end up so out of wack afterwards. Had I known this, I never would have put myself into this position. It's been a struggle almost everyday to get up, make lunches for my kids and get them off the school or camp. I used to be superwomen who could do ten chores at a time and then still have time left for a hobby or two.
Now I keep waking up with dark thoughts of ending my life. The worse part is I have reached the point where they ask you "have you planned what you would do?" Unfortunately, I have. At least my brain has. I'm kinda hanging in there, stepping back and telling myself that this thinking is ridiculous. Most of the time I can pull it together and shake these moods.
Today, being Sunday, I took a 1mg Valium at 5:00a and then another 1mg at 6:00a and then at 7:00a I took .5mg of Ativan. Yesterday, I had an anxiety attack because I couldn't get the obsessive thoughts out of my head that my treatment should have been different. Of course, here I am this afternoon and my family went to lunch and ice skating for Father's Day and I'm far more relaxed. I'm being honest with you all since if anyone else feeling this way you are not alone.
I've had a lot of the you should be talking to so and so too. They always want to pass the buck. My BS, who originally wanted to do the least amount of testing, etc. is the one I both trust and feel bad about. I requested an MRI in the very beginning to make sure the other breast was okay and ended up with an additional biopsy. I discussed the SN procedure and ended up with 6 nodes instead of 1 coming out (SN was negative). I mentioned the ultrasound that should follow the mammogram at my follow-up because of dense breasts and ended up with a needle aspiration that may have caused LE in my breast. Do you see where this is going? Nowhere fast, except guilt and sadness. I know I need some type of antidepressant, but I'm scared of SEs from those. I already sleep poorly from chemopause. That's another thing... I miss my periods and having the chance to go through menopause naturally. Sorry for the negativity... I just want to feel better soon.
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Rocky, I want you to feel better soon too. I have a long history of depression and have been hospitalized quite a few times in the past. The last time was 1990, so I was fairly sane before getting this dx. Anyway, they aren't too bad -- if you should need to use them. However, a nice vacation with good people would be even better. As far as antidepressants go, I do not recommend them. We have reason to be depressed. I think it is a natural reaction to what has happened to us. I think talking about it would be the most helpful thing to do. I do take an antidepressant and was trying to get off them shortly before my dx. They can be very difficult to get off of once you start. However, and this is a big however, I have been taking them since the early 80's. My brain is dependent on them. If you need them for a short period of time, something like Celexa could help get you through with greater ease.
I love your signature . . . about someone moving the ends. LOL We have to try to keep our humor.
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I am one of the "what if" stories and trust me, I doesn't help a bit to go there. You will just be giving up your health and recovery by living something that hasn't happened and probably won't.
I advocate making a plan for recovery. We make plans for treatment, don't we? We are going to do this surgery, this chemo, for this long, then we will be doing this recoonstruction and this post-cancer treatment.
But, we forget we have to do the same thing for our emotions.
It's like a muscle you have to use. You get in that "i'm not healthy but I'm strong and can make it mode" and then you are done. Boom. Then you notice aches and pains of recovery, you don't know what to do with yourself, etc.
I think people should set goals. 1) Try to stay away from cancer forums, books, and other materials. You are done with treatment, you don't need to keep researching, exploring aches and pains, etc. If you have made friends, invite them to facebook and make a pact not to talk about cancer all the time. Vow to come ONLY if you have a symptom.
As for symptoms: 2. Give yourself the two week rule. Dont' immediately assume that pain in your back is mets, as everybody gets pains in their back. the odds are it's not mets. (I now, you have the most aggressive cancer ever - well, even you can have a pain. If, it's still there in two weeks, then you bring it up with your onc.
3) Use the past tense when talking about cancer. "I had cancer once." Not I have cancer, or even I'm recovering from cancer. Put it in the past.
4). Find a new hobby or go on a vacation that marks the end of cancer and the beginnning of a new life of health. Change your diet, quit drinking, whatever it is that you want to do. But, mark that dividing line.
Speaking as a person with mets who discovered those mets only four months after the end of tx, I am very glad that I took my own advice and didn't think about cancer all the time. I had those four months where I thought I was healthy and put cancer behind me. It was great to feel normal.
It will happen with time anyway, but you can accellerate the process by doing some of the things I said. And, if you don't want to give it up, than you have to explore that. "Why don't I want to give up the fact that I'm a cancer patient? Does the attention fulfill a need? Does the thought of it give me a niche I enver fell into before?"
Good luck with your recoveries, ladies!
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Cool Breeze, I remember your good advise from a year ago. I believe you were one of the first ladies on this site to try and help me calm down from my initial dx. It's nice to hear from you and ironic that your post to me was almost a year ago from today :-). Anyway, I know you are right and this "what if" and obsessing is extremely unhealthy. I want it to stop, but I do question if it's in my control to stop it. Even stranger then you posting is that you mention making a plan for recovery. About an hour before I saw your post I was typing a list for myself called Good reasons for my treatment. I had only typed a few before taking a break to see what was going on at BCO. The following is what I have so far.
1. Menopause will be finished soon and I won't have to go though those rough patches that I was dealing with a few times a year that include depressive episodes and loss of sleep.
2. Mood swings may be intense for awhile, but will calm in time and may even be gone forever when the menopause has finished.
3. Grief and loss are normal reactions to breast cancer and I need to re-read the livestrong website that tells me everything I am feeling is normal.
4. Knowing these emotions are "normal" may help me get through them even though they are stonger and scarier than I have ever experienced.
5. I'll always know that the chemo I had fried any of the other possible lymph nodes that could have had cancer in them or could have taken the cancer to other parts of my body.
6. My hair will grow back and in time will look more beautiful and healthy with a better haircut and color then before.
This was as far as I got. It wasn't exactly a recovery plan, but you're right that it's important to get back into the I'm strong and I can fight mode.
I have been lucky with various symptoms since the end of treatment. Everything and all SE's did go away except for this new one that has been around for about a month. I am going to check it out and I pray that even if they call it LE, we can get the breast back down to it's original size.
The "end of cancer" dividing line sounds like I great plan. Maybe after this LE/boob thing I'll be more at peace. The funny thing is that I was almost there until the breast swelling. Personally, I'd rather have an outside challenge to deal with and nothing else with me. Wishful thinking, but maybe.
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Hi ladies,
Just a quick note to add as it is late and I need to get up early tomorrow. My therapist told me to say to myself when I start obsessing-
I made the best decision I could with the information I had.
Sometimes it helps!
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Many years ago I picked up a library book on anxiety and depression. I wish I could remember the name, because it was so helpful to me personally. The psychiatrist who wrote it had a lot to say about the danger of "ruminating." (Which seems like such a good descriptive word for going over and over something in your mind -- don't they call it rumination when cows chew their cud?)
He seemed to think of rumination as an unhealthy mental habit that can be broken. I wish I could remember what strategies he had for doing so... For me, just recognizing that I was ruminating was a help. When I start endlessly recycling the same thoughts, I can label it for what it is and kind of stop. Music helps too.
Oh wait! I just searched Amazon, and the book might have been The Worry Cure by Robert Leahy.
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Good morning -
I think I'm a ruminator. Or maybe just a worrier - I don't know- but my head never stops talking. I'm usually up during the night sweating the small stuff, sweating the big stuff, and just literally sweating in general.
My new psychiatrist prescribed a book called 'the Mindfulness and Acceptance Workbook for Anxiety. I haven't picked it up yet (I'm also a procrastinator) but I plan on getting it and will post an update. What I can recommend is a CD/Download called 'Guided Meditation to Well Being' by Belleruth Naparstek. I've mentioned it before, but I thought it might be worthwhile to put it out here again. I'm not a good candidate for meditation because of my constant mental chatter - but I found that by listening to it in the morning, my mood improved during the day.
It may not work for anybody, - but I find any extra calmness, no matter how tiny, is still a relief. I wish there was a simple a remedy to deal with obsessive thoughts but everybody is so individual, and getting through it is so painful. I feel for everybody who is hurting right now.
Janet
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Kayne, I read your post and I've had friends tell me the same thing your therapist said. These last two nights I've slept through the night with very little Valium. Previously, I had to take meds before bed and every time I woke up (usually twice a night) so I could go back to sleep.
When I woke up these last two evenings, I've repeated to myself, "the chemo I did saved my life." I repeat this over and over and found that it masks any other thoughts and I didn't have to take any meds to get back to sleep. This is a move in the right direction. I feel if I can get back on a healthy sleep pattern, some of these mood swings will begin to resolve. Also, by chanting some positive thoughts when I wake up, I'm hoping some of the "what ifs" and "should haves" will be replaced and my mind will settle down.
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WTG Rocky. And Robo, I can relate to what you described. I don't have children either. I have my birds, but I don't think that's the same. When I wake up in the morning, my first thought is "NO." Then I spend several hours trying to go back to sleep as I steadfastly refuse to get up. Finally, out of frustration I do get up and then amazingly even manage to accomplish a thing or two. LOL. I hope this will change when I retire in just, um, 11 days.
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Robo, thanks for the hugs. I know we have been on the same forums together this past year. This is very tough. I'm not sure there is any specific reason why some of us have fallen apart. We all have different personalities and some of us who plan and think and analyze can think ourselves into a bottomless pit.
I was able to calm of my mind tricks only to have another creep up on me while I was sitting in a movie theater last weekend. I had to walk out to the lobby and breath into my hands (kinda like a paper bag :-)) to calm myself. Some of these negative thoughts have gotten better for me by repeating positive statements over and over when the unproductive thoughts come in. It sometimes feels like a mental boxing match in my head, but I am determined to have the "good guy" win. I can't take anti-depressants and I envy those who can. Even the Tamoxifen sent me down a dark hole. I try to remind myself that chemo and rads in retrospect were the best defense I had because I would have never known that I'd have to forgo the Tamoxifen.
6.5 months PFC and still having hair issues would hurt anyone. I feel for you big time! I hope that your body just clicks into gear and perhaps all of sudden the hair starts to happen. Do you have hair on the back and sides of your head? How long is it there? Appearance is VERY relevant and don't let anyone tell you otherwise. We are women and our appearance is important to us. Keep posting and letting the feelings out. I think it helps both you and the others (like me) reading.
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I've never been a girly girl. Have wash and wear hair, spend most of my time in jeans and a tee shirt etc. That said I cannot even begin to tell you how horrified I was when we were talking chemo and I thought I might lose my hair. Just applauded. As it happened I didn't end up doing chemo but I definitely feel for those of you who are dealing with hair issues.
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