Why was I stronger DURING treatment than I am now?
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The recommendations that I have read have always emphasized that you should ask questions, take notes, and even have someone else there with you so that you have a second set of ears. Was this an older doctor? My mom had "white coat syndrome" as she called it, was always afraid to ask questions of her doctors. I think that generation (I'm 56 so I'm talking much older) got used to that authoritarian model where the doctor talks and the patient listens.
You weren't playing Angry Birds on your phone, you were taking notes about some serious health issues. Even if he was going to hand you the reports, sometimes reports are baffling to read. And some people (like myself) simply remember better if they write things down.
And you've been through chemo. Hasn't this doctor ever heard of chemo brain??? Some days I'm lucky I can find my car without a map.
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I so agree that being able to ask questions is key to a good relationship with my doctors and nurses.
I found that during my diagnosis, surgeries, infections and chemo and herceptin I actually didn't spend much time or ask nearly as many questions as I would have thought. Having had a mother who had 5 separate (non-metastatic) cancers over 15 years I thought of myself as a great health advocate and was always taking notes, researching things before her visits and asking a lot of questions. When I was the patient I sort of went blank. I literally just read my pathology report in full last week and discovered there was DCIS in addition to the IDC tumor in my left breast. I have no memory of hearing about this - and still don't really know what that means.
I find that now for the first time in a year I am able to get on these discussion boards, research my cancer, treatment options, medication side effects, etc.
I try to write down questions or things that come up as I only see my doctor every three months now for the first time in a year and a half of seeing her every six weeks.
I ended up switching oncologist early on in the process, prior to starting chemo when the oncologist I was seeing, whom I liked a lot and felt really helped me in making the decision to be agressive in my surgery and do a bi-lateral mastectomy based in part on my specific cancer but in large part on my family history. I switched because when I had my first of two post operative infections I felt that the PS and the Infectious Disease docs working on my case were not keeping my oncologist in the loop. I asked to meet with her one day - just stopped down in the clinic when I was there for another appointment. Wasn't suggesting I would see her that day just wanted to find when I could talk to her. I happen to spot her down the hallway as I was waiting for her nurse to come out.
When her nurse came she pulled me into a side room and told me that my oncologist was gone for several days so it would be awhile before I could talk to her. I was a bit stunned that she lied right to my face, given I had seen her in the hall three minutes earlier. Anyway, it was enough for me to find a different oncologist and nurse team to work with. Trust is SO important.
So my long two cents is definitely ask questions, take notes and let your doctor know that this is something you will do and continue to do.
Take care,
Julieho
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OMG Dear Ones
I just deleted my post that I made in the middle of the night. Y'all's posts didn't show up before I did this. I woke up this morning thinking how dumb am I. Of course I need to apologize! My BS is much younger. Probably early 40's. I'm 63.
I remember my husband and I sat there slack jawed and in shock as we listened to him thinking out loud about the merits of lumpectomy v mastectomy. I ended up with bilateral mastectomy in less than 2 wks time. I do have to remind myself that I did have two IDC tumors. One on each side.
Yes I was alone this time. My husband always goes with me. He was at a nearby office having staples removed after a spinal cord stimulator placement. I hadn't thought about it but this could be the reason the bs felt empowered to act the way he did.
While I realize I shouldn't have been questioning other Drs decisions to him the questions just seemed to pop out. Lol.
i had been quiet long enough I guess. I know I have a way of "putting things in the closet" and focusing on the task at hand. I guess that's the warrior in me yet I hadn't thought of it that way before. Y'all have helped me to clarify my thoughts and beliefs. Thankful that I'm processing now and even more so that I'm alive and have the opportunity to process! I'm also thankful for the Drs who have gotten me this far even though I'm not impressed with their bedside manner now!0 -
Deb, I did wonder if you were alone. It's so wrong but I've found that my drs treat me ENTIRELY differently when my husband is there. It stinks. But it's a fact. I'm not as assertive as he is and he won't let them walk all over me, something that I do tend to do.
I've been going to me internist for over a decade and it's always in and out within 10 minutes. I once took my husband with me and he sat and chatteed for a long time. It really made me wonder, doesn't he know that I'm there and I know how he ususally acts?
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I always took notes at my appointments. Not only that, I had a Lifescribe pen that would record the doctors while I took notes. I never told anyone I was recording, but I wanted to make sure I understood what the heck they were saying. I am not real good at picking up information the first time. I need to hear it again and process it. The pen was $100 at Best Buy and was invaluable. If I was second guessing anyone, I could listen again and then it would be like... "Oh that's what they meant" as oppose to "What the heck are they trying to do to me?"
My 15 year old now uses the pen for school :-). Got my monies worth!
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Rockym,
I want that pen! - ai had a consult with my gasterentologist Mon - he was very rude! I didn't feel able to ask anything.
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I have to get that pen!!!! We asked my onco if we could record what she said and she said no. She said we should take notes. Drs. are so defensive, so afraid of lawsuits. But who can hear what a dr is saying? It's just wrong!
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Wow, I'm happy to have found you. I have been a mess lately for no particular reason.....haha! I've ONLY been dealing with cancer since January 2012 with my first reconstructive surgery nine weeks ago. My PCP, a cancer survivor, reminds me every time I see him that I might go through a hard time after treatment. Anyway, today was a better day and it sure helps to hear you all express some of my same feelings. Thanks.
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It's actually called Livescribe! Oh boy... I was thinking Lifescribe :-). Maybe because it helped with life??? Anyway, there was a doctor who I thought was full of shit, but after listening a bit more closely I realized that I was the one who wasn't thinking straight. I was confused back then about the SNB and because of the pen, I didn't have to call the BS back for more questions. There was also a lot of questions about whether I really had to do chemo. I did have 2 positive nodes, but was trying to come up with a good reason to skip chemo. After re-listening to everyone, I made my decisions for treatment.
A few people asked if I told the doctors I was recording them and I definitely didn't. I had a special notepad where you take notes that you use with the pen and a cool pen that did have a digital LED screen on it. My feeling was if the doctors weren't smart enough to know what the pen was or ask, then that was their problem.
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You can record consultations on android and I-phones.......
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True, but with the Livescribe pen you are taking notes while the conversation is being recorded. Later on, you can go to your notepad, touch the pen on the word or phrase that you want to listen to and the computer or pen will start from that very point. I have one conversation that was about 1.5 hours with my BS. We were discussing pathology reports and later on, I went back to my pad, tapped on that area of discussion and listened to the dialog. The pen/notepad is very different then just recording a conversation.
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Wow! If I had to do this all over again (heaven forbid), I'd be all over that pen.
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Where can you buy these pens? Amazon?
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Jeannie57 - Welcome. I just found this board a few weeks back and felt SO much better after reading that other women had a similar response to treatment ending.
It is not that I think I was amazing during treatment. Although I do feel just showing up and doing all the things we all had to do; surgeries, chemo, drugs to combat chemo, infections, etc is pretty amazing in itself. But, as difficult as those 14 months were I felt I was doing something and that as long as I did these things I was getting rid of the cancer. Now I feel like I am living with both the memories of this past year, realizing I had cancer and the new "realities" that having cancer has brought to my daily life now - but no longer feeling like I am doing anything to keep it away.
And then I get anxious about my emotional state and feeling depressed and that when I "allow" this to happen I am weakening my immune system and allowing the cancer to come back. These thoughts are not at all coming from an "intellectual" reality but an emotional place that makes me "feel responsible" not so much for the cancer, but for not cherishing each day I have, for not living in the present and being grateful that I am not having chemo this fall, that my hair annoys me as it grows out, but it is growing out vs falling out, that my implants and chest hurt, I feel constant pressure and pulling and find myself feeling something painful right along the site of my cancer on my left breast - but there is no left breast - just a boney feeling alongside my implant.
Ugh - some days are better than others. I know this and I hear from all of you that you do too. But the days, or even just the moments of any day where I feel overwhelmed, anxious and frigtened that it will come back and that I just can't do this again - all while I often feel like I can't even do this now, is just plan difficult.
I so appreciate all of you understanding this. I feel lonely much of the time - which also is hard because my husband has been SO there for me, helped me each step of the way and really understanding, and I am blessed to have good friends, my kids are just beautiful and helpful but I am overwhelmed by feeling I just can't have them see me a "mess" any longer. I spent 16 years with my Mom terrified she wouldn't make it, so scared of her cancer diagnosis' every three or so years and I am overwhelmed by feeling like I can not do that to my children. So this is my safe place. To share with all of you that I am still scared, overwhelmed, sad and often in pain. Thank you so much. You each remind me that we are not alone in this journey and that feelings are just feelings - they are not necessarily true.
Take care everyone and thanks for being here.
Julieho
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It is such a gift to be able to help. Thank you for sharing.
My mom had bc too. But they didn't have the treatments they have now. She had no chemo, no tamoxifin, no AI, no Herceptin. And she lived 15 years, cancer free anyway.
Who knows what they will discover tomorrow?
Till then, we all understand what you are feeling. And we're all there to help you through.
Next year, at this time, you will hardly remember. That's the great part of chemo brain! lol
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Group hug............i am having dreams about being a target....arriving at a junction where there are five bodies in the road and a nasty thug......who says you showed up its your turn next......
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Julieho,
I completely understand what you are saying. I hate this no-man's land. It's just awful. I know now I won't see my breast sugeon until March of next year. I hate that I feel responsible for 'policing' my own body. I spent years being terrified of breast cancer (always at the clinic, with lumps bumps) I could barely examine myself then without a thumping heart. Now it's going to beat right out of my chest.
How often does everyone else examine themselves now? weekly, monthly. Not sure what to look for. feel I could be back every week.
This end of treatment is sure hard. I feel like I have to 'keep' cancer right at the front of my brain, lest it creep up on me, and 'get' me again. I am keeping busy, working again (only for a week) in the hope that 'time' will slip by without me noticing and it will be 5 years and I will be able to relax. occasionally I do 'forget' I have/had?? cancer and chastise myself for that 'forgetting' and remind myself again.....
I dare not look to the future. I feel I am lurching from one check-up to the other. I cannot work out how to have some 'balance'.
Physically, I still feel a wreck. I am to have my oophrectomy in Nov. But in a way I am glad to have it as I still feel I am under care, that even though it is unrelated to my bc they will still be vigilant.
ooh, this is all hurting my brain.
I am going to Gooogle the pen......
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WS you sound like you are in your head watching your body looking for naughty cells.......what if you climbed inside your body ? What would it say to you? I look more than feel these days, as had no lump before.......but i think i will listen more to the signs my body and psyche will send out if there is a next time.........
Hope you dont mind me saying?
H u g0 -
Lily55
Nope, don't mind you saying. I always think you pose interesting questions. I like your honesty. Although I am easily distressed at the moment
yes, I think I am 'watching' for naughty cells. If I could look inside my body, I think it would tell me it felt tired. I think it would say, 'I need a rest, and I can't take any more'. I don't think I have ever been truly well. Ever. I always seemed to be under par from being young.
I feel the one time I didn't listen to my body (because I had had enough of listening/looking/feeling) was the time I should have had the speakers turned up. I was late going to the docs with this bad boob (what happenend there??), I can't really work it out. But that's done now.
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You can listen now? You sound exhausted......
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Wintersocks, it's still so new. Give it time. One year is nothing. You're entitled to be tired!
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Wintersocks i have sent you a private message
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I posted something over a year ago ago called "The Would Have Should Have Thoughts." Some of you are only 1 year out and Timbuktu is right in that not a lot of time has passed yet. It does seem to take our bodies a bit to find their balance along with our minds. Unfortunately, the older one's body is, the slower to bounce back and menopause can age the body tremendously. I posted the question below in June of 2012 and it's amazing to see how far not only myself, but others have come as well. I'm hoping this post can give some of you some perspective. As for the friends who had told me you never get back to normal... well I'm glad I didn't believe that. Life is never the same day to day regardless of cancer, but I feel my life is very much back to normal.
Posted on: Jun 13, 2012 05:14pm
Rockym wrote:
Anyone out there whose brain just keeps playing tricks on them? I just don't get it. This week will be 1 year since my dx and currently all my treatments are done. I couldn't take Tamoxifen as it was making me nuts (but that is a whole different topic). I had my surgery, chemo and rads, but now I keep trying to look back and make some order to all this. For a while I was thinking that it was my Breast Surgeon's fault that I ended up with chemo. Then my mind came up with some other situation where perhaps it was my fault I had to have chemo. I have never denied I had cancer and I was never scared about it. I handled it very well and then started to crash. Somehow my head goes back to thinking I was overtreated.
I am a very analytical thinker and unfortunately, my mind will go back and say (no real voices :-)) if you didn't ask for this type of treatment, such and such wouln't have occurred and life would be different. Then I even felt like my BS wasn't straight with me and choices were made that has left me questioning EVERYTHING. My BS is truly a good person and I know this, but there is some weird stuff happening in my head.
Just when I thought I had a handle on things and talked with my counselor, friends, mom, etc., a new scenario popped up in my head. I keep thinking that things my BS did or I did created my pathology report to be what it was instead of just accepting that it was a cancer with positive nodes and I made the treatment choices I made. It's hard to explain and it's a bit obsessive, but it's there. One day I'm feeling great and the next I'm a mess. There is so much guilt on my part as to the effects my cancer dx and treatment has had on my kids (now almost 10 and 14) and my husband.
I did try antidepressants for a bit, but I was also on Ativan at the time and was having side effects from the antidepressants and had to go off. I am now on very small amounts of Ativan and Valium to deal with my broken sleep, chemically induced menopause and anxiety, but THIS SUCKS! I see a therapist, I have a good handful of people to talk to, I started to go back to the gym, but I am at a loss.
HOW MESSED UP AM I????? How normal is it to want to blame someone or yourself? I've asked a few BC survivors when do things get back to normal and they both said NEVER. I don't believe that. Life has to settle down again. Anyway, please post and tell me if you have been in this boat. One psychiatrist wanted to give me some very heavy meds recently and personally, I think she was the crazy one :-). I am not psychotic, I'm frustrated, sad and confused.
Thanks for listening.
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This is really the right place for me to be now. I was strong and positive during chemo, surgery, and most of reconstruction. Things started with diagnosis in November 2012 and two weeks ago I had nipple reconstruction and a slight revision by the PS on one breast. All I have left is tattooing the aureolas in several months.
Well, I have been an emotional mess since about a month ago. Anxiety and depression through the roof. I'm close to being agoraphobic. It's gotten worse once I saw the unveiled nipples. I cry at least once a day. I feel lonely but contact with others, aside from my husband who has been great, feels abrasive. So I feel lonely but almost allergic to people contact. When I force myself to be a part of a two-some or a group, I feel even lonelier because I just can't connect.
I have periodically had depressions begin in the fall and my therapist thinks that much of what I'm feeling has to do with the BC trauma layered on top of my pre-BC struggles with anxiety and depression. I'm on antidepressants and anti-anxiety meds in addition to talk therapy. So, I'm getting professional help but I feel stuck.
None of my pre-BC activities appeal to me. I push myself to do them anyway and then feel worse because I don't enjoy them or make a mess of them (e.g., amateur art, quilting). I haven't been able to go back to my intellectually demanding part-time job because my cognitive abilities aren't up to the task (whether this is chemo brain, the depression, or both I don't know). And I feel really bad about myself for not being able to work yet. We really need the money.
I feel bad that I don't wake up cherishing each day, being grateful for what I have and what I've survived
My therapist reminds me that it is unrealistic to expect things to be bright at this point. That my feelings reflect the ordeal I've been through. But I keep looking for that strong and positive woman who was me during treatment. I miss that me.
I hear echoes of some of this in others' posts here and I feel comforted by that. Some of these echoes are so close to how I'm feeling right now it's eerie. RockyM I'm sure glad you started this topic.
Thanks to anyone who took the time to read this rambling post.
Peggy0 -
All of these posts say one thing to me. No one prepared us for what would happen. We all thought that after treatment was over we'd just return to "normal". That's just not how it works! I wish someone had sat down with me and given me the facts, what to expect and when. I had this idea and this expectation, and it was all off. I've had people tell me to "just get on with it" and it made me feel horrible. Like a slacker or a hypochondriac. I actually ended one friendship because she made me feel so guilty about not being the way I was. I had planned a trip to Europe the summer after treatment. It fell apart but I was so relieved! No way could I have done that then. But today I walked 2 l/2 miles and I feel great. I told me husband, I think I'm ready for a trip now. I was diagnosed in July 2011. Had chemo until March 2012. I'm feeling my strength come back now, after all of that time. All of that time sitting! I thank God for every bit of strength.
Cognitively I'm nowhere near where I was pre-cancer. But I'm a lot better than I was a year ago when I couldn't even find the garage I'd been parking in for 5 years! We've all been there Peggy and God willing we're all crawling our way back. Patience. Don't expect so much of yourself. I keep reminding myself that chemo is the same poison as mustard gas. All of the talk about chemical warfare, we've been through it! We can't expect to bounce right back!
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This piece of Rockym's latest post really hit home with me:
One day I'm feeling great and the next I'm a mess. There is so much guilt on my part as to the effects my cancer dx and treatment has had...
That is it, in a nutshell. It's so unpredictable. I don't give myself any credit for the good days, but beat myself up for the bad ones. In essence, I've done this all my life. Post-BC just makes it that much more jarring.
PeggySull, I read your post, more than once. I can relate to what you are going through. On the one hand, you need be getting back to normal and making a living. But it's hard to do that and cherish each day at the same time. I only had a lumpectomy so I can only imagine how hard it is go keep going through all of those surgeries. Keep coming back here...it helps!
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Peggy, Rabbit actually started this topic, but if you read back from the beginning, you can see some of us were in some very dark places too. You, my dear, are not even a full year out yet and you have been through so much. Crying is good, crying is okay... this is our bodies way of releasing all the bottled up emotions. I came here a lot to post when I was in your place. I also went onto chat a bit since I really needed others who could talk with me in real time.
Your depression right now is valid. It sucks, it's painful and truly unpleasant, but This To Shall Pass (thanks dad). I can't turn things around for you, but I can say "fake it till you feel it." This is basically what I did until the day came when poof, like magic, all was well again. It will be for you too. It sounds like you may have been down this road before in another situation and that probably turned around too. I find that the memory of the crappiest times getting better, remind me that it does and will happen again.
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Peggy - I've been on this thread for over a year and it's been my safety net when I'm blue, and my backbone when I feel like I'm losing my mind.
Most people seem to reach this point a year or so after diagnosis - so I'd say your right on track. I know that knowledge doesn't make it one tiny bit easier, because this is a very difficult time. Not to mention lonely, frightening, frustrating, and confusing. But this isn't a one way ticket to the bottom. From my own experience, and from following other's, I know that it a steep fall and we are bruised and broken. But once you start falling apart you also start rebuilding, and piece together the past and present to create the 'new normal'. Piecing together is a huge task as diagnosis and treatment has forced us into an expanse of emotions and situations that are way outside the stratosphere of normalcy. There are so many new pieces to incorporate in our old body and new selves.
(It's like going through puberty times 1,000,000).
This is a short post in answer to a huge problem. But you are not alone, and it does get better. As Rocky said - you've been through a lot, and you need time.
Janet
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I recognise all this and more! I recently had some fat transfer surgery and that knocked me back emotionally too even though i chose it....BUT I am in an interesting situation right now which is making me think......i volunteer in animal rescue and we have a very badly traumatised dog in at the moment and we have devised a special plan for him to give him time to adjust, to trust and connect to a more normal life, and i see him looking out of his pen just watching looking to see how it all works, we have restricted people dealing with him to just two and no one expect anything from him, any contact is a bonus, and i think we are like him, we need very delicate handling and understanding and compassion, its making me be a bit kinder to myself......i can see the trauma in his eyes and body, others probably dont.....and i think we expect too much of ourselves.......
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Peggy,
Welcome - I just found this amazing group of women myself a few weeks ago when I started feeling like I was crumbling emotionally and couldn't figure out why, now that I am physically stronger, done with weekly or every three week infusions, my hair is slowly coming back I feel so lost and broken and like I have no idea who I am as a person any longer.
I am a middle aged woman, whose breast - fed and cared for three babies, consoled and comforted my other two adopted children and shared a long monogomous relationship with my husband and as important as they are in my life by NO means did I feel they ever defined me in any specific way. Yet, losing both my breast, learning I have cancer, that I had to undergo chemo, herceptin and stay "vigiilant" about any symptoms I experience in order to find any new cancers have left me not knowing who I am at all. The chemo, surgeries, infections were all bad but I felt them all, went through it and thought - ah, I am sick but this too will pass....and it in large part has. But the feeling I am left with now is who is this woman that is here now. Where is the passion and joy I saw in watching the birds at the feeders, walking out on a crisp morning with buckets of grain for my horses, donkeys and goats and marveling at them as they grazed in their pastures. Waking up surrounded by my pack of 5 dogs all "waiting for me to arise" to get fed each morning. Four rescue dogs and one a recent rescue (got her during chemo) 10 lb chihuhua mix of some sort who curls up next to my neck and then takes on the world with a gusto one has to appreciate each day. Yet, it is like I am watching all these things that I love, things that brought me joy and connection and feel oddly detached and outside of them and myself. Which seems so psychologically cruel - to have undergone so much physical pain and difficulty for 14 months so I could have my life back and then feel like I don't recognize or fit into my life.
When I read Janet and the others post on this board they describe that this is part of the process, and like everything else we went through, it does get better over time - slowly. Which very slowly rebuilds my hope and belief that this too shall pass or at least transform itself and I will feel connected again to something that feels more normal. A new normal likely, but something more normal nonetheless.
Welcome to our discussions. I hope they give you hope and strength and also a place for you to feel safe with being honest about how you are doing and feeling. I know for me that was so important - I have wonderful friends, a very supportive loving husband and great adult kids but I find talking to all of you just feels "safer" - I know I won't disappoint you or put you into a state of worry about me because I am not doing well emotionally and struggling right now. You are all concerned but you also all identify and understand and that helps tremendously.
Thanks again ladies. Sending you all love and healing thoughts.
Julieho
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