Why was I stronger DURING treatment than I am now?
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Thanks Scottie for being so open and honest ... I think we all think that we can handle anything,but sometimes we need help. I think it is important to realize, it,is not a weakness to ask for help and help comes in different shapes.
I am taking Effexor and I know that it is helping with my "coping".
Joanne0 -
Joanne.....very well put....I know meds are not for everybody and I struggled all summer
to try and avoid them, but there is something called "quality of life" and that's a struggle right there for most of us. I don't regret my decision and I think others who are going through difficult times should at least discuss it with their Dr.0 -
I am NOT ok either! But, I faked it really well today and feel a little better. I cried all day yesterday.
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Hi all...I am sorry to see that some are having a difficult time right now, but please know that we have all been there, so we totally get it and good news...it is totally normal!
I think this whole BC experience really is a process. The problem is that we all figure when we are done with active treatment, that we are done with everything, but that is when the real work starts and at least for me, that came as a shocker. After all of my treatment was done, I felt like I had no serenity in my life anymore and I was constantly in turmoil.
From the biographical information at the bottom of some of your posts, it looks like many of you are at the hardest part of "post-treatment". I think it hits people at different times and in different ways, but in the end (although it sounds trite), time really does heal all wounds. I can assure you that it does get better, eventually. You will all re-gain your footing...it will just take time. You just have to be good to yourself and give yourself a break. Reach our for help as needed in whatever way best helps you. If that is here, that is great. Maybe it is with the help of family, friends, a therapist, support group or medication. When we are physically sick, we go the doctor, take medicine and do everything we can to heal. Our spirits need healing, too, particularly when they have been broken by something as significant as a diagnosis of breast cancer.
Tonight, I am praying for serenity for all of us.
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I feel anger, like I didn't really know what to expect or what I was walking into. Sometime I wonder how Long it takes to kill you.
I wonder about the AIs. I can't believe i did ok for several months and rhen thwacked and pains began. Is it bad to exercise on estrogen- stripped joints??0 -
Having a life threatening disease like BC has changed me forever. I will be always thinking about it - days nights all the time!! The fear of reccurence will always be there and that must be normal. Tears and fearful thoughts occupy me all the time and there is really nothing I can do to change those feelings. I have been exercising, meditating and at times socializing. I find that socializing is difficult because I don't know how I will be feeling emotionally for THAT day. I have become somewhat of a hermit and do not want to talk much to friends either. This is the new me and I need to accept myself as I am!
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All true, what you ladies have said. I know that I feel I would not do treatment again. I do not feel OK. I had some myofascial (??) massage and realized it brings up these cold terrible thoughts. I'm devastated. I"m wrecked. The Arimedex makes me feel like I"m 100. My joints hurt. Not sure how to make it better. Maybe I had the healthy life I was supposed to have and I am done. I just know I can fake it to a certain point- I can be glad I have some hair (1 inch long) on my head. Yet inside I feel like my body is destroyed. And chemo and hormone inhibitors are an awful treatment for a tiny benefit.
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Lisa, you have had a lot happen in a short time. You have been put through a ringer. Now is your emotional healing time. Talking to someone, medication, meditation .... Please take care of yourself. You have done everything for your physical health ... Time for "you".
Joanne0 -
Thanks for the reminder, Joanne. I am seei g a Therapist and take Ativan as needed. Trying to exercise more. I am trying to improve my bleak mood! It is a lot, and the effects on other parts of my body Infuriate me.
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Lisa, it looks like you aren't that far out from the beginning of the shitty dx and treatment and damn, your sig. line shows ovary removal from last Friday??? I'm not sure how old you are, but your stats look like you've been through a massive amount. Chemo recovery takes a long time. I should now... I'm still at it and getting used to our bodies that have been tweaked also takes time. You'll get there and hopefully soon.
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Ladies... in the topic of age... I posted the below to the mods. Let them know in that forum if you want people's birth year in their sig. line. I know it would make a difference for me when I am responding to someone's post.
Topic: Birth year in our signature lines?? Forum: Comments, Suggestions, Feature Requests
Mods,
I was posting on one of the threads and I posted the following:
One stat that my friend mentions often around here is that AGE plays a big role. We have these cool signature lines, but the only place for our age is in the more detailed information on our bios. My friend and I would love if the ladies birth years were right up there with the DX. Maybe I should ask the mods because if someone is 40, 60 or 70, so much of treatment decisions can differ.
Just wanted to throw this out there. It can be frustrating sometimes where someone is talking about their decisions or their MOs treatment plan and that person is 30 or 70. Not all treatment is created equal and if we are reading through posts, it's confusing unless we ask the person directly.
Just a thought :-)
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I agree re age would be helpful.
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I hope that the fact that these thread is quiet, is because everyone is doing okay. But in my case it was taking such big steps bakwards that I could barely talk about it - beucase i'm getting so damn bored of talking about mself, and the psychological side effects of BC.
I've developed lymphedema in my right arm, and while mild, it made me want to scream. 'OH COME ON!!!' to anyone who would listen. I know it could be much worse, but it was just another thing I had to research, and treat, and go back to the hospital a couple of time, and physio therapy. And I'm also kind of p*ssed that none of my medical team let me know that I should be keeping an eye out for this. Or maybe they did, and I didn't listen. Anyway - it sent me into a downward spiral that has made me feel pretty fragile. I cry at anything. I'm no longer a brilliant multitasker, so when someone calls to add something to my very full plate I feel physically weak.
And angry. Even Christmas is getting me down. Last year, when I was bald and going through chemo - I was pretty calm. But this year - not at all. A few people I know have annual Chritsmas celebrations, and instead of being grateful when I get the invitation, I find myself thinking b*tchy thoughts about how nothing ever changes. Same food, same people, same Christmas lists for the kids. I've gone into stores and then walked out after two mintues. Too crowded, too loud, and too hot, too impatient.
Last week I was driving, and I was pulled over for talking on my cellphone - which I never ever do - expept that day. So of course I started crying in front of the 12 yr old policeman, which was so humiliating. And then, even though I had a bunch of stuff to do, I felt so disoriented that I could barely continue. I had to write a list, and follow it closely, cus I could barely make it from A to B. And then I just come home, walk the dog, and got to bed.
Jim tentatively suggested I may be depressed, and I said 'F*cking right I'm depressed, Sherlock!'. I've got a puffy arm, a deflated breast, hotflashes, and a big surgery next year. i've always really like my hands, and I write a lot, so it's the one feature I see all the time. Unless I look in the mirror I don't know what the rest of me looks like, but when I looked down I saw two pretty hands on the steering wheel, or two pretty hand on the keypad. And now one of them is puffy, and has to be covoured in a flesh coloured glove.
I'm sorry to rant. But most of the world is happily content that I'm back to normal and can enjoy a festive white Christmas with plenty to celebrate. But I'm not going to! Instead, I just booked a trip to Cuba with my mom, my sister, and little nephew and we're going to spend Jesus's birthday swimming in the ocean and drinking rum. I'm not really an all-inclusive type gal, but this year I can't think of anything better. The thought of going for seven days without carrying one single shopping bag is thrilling! And reading a couple of books from start to finish. And not being asked about my hair.
Ok, that's it for me. I forgot to metnion that we're moving, so I have to get back to one-arm packing, and take the dog out for his morning stroll. Moving is stressful too - but I'm actually getting rid of a lot of stuff, and it's very cathartic. Not so much for Jim though, he's hanging on to his stuff for dear life as I'm on a mission to purge almost everything.
Thanks for listneing. I sincerely hope, fromt the bottom of my heart, that everyone has some calmness and happiness in their lives today.
Janet
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Janet, you really are having a hard time. Good for you for booking a trip. I know the last think you want or need is another appointment but maybe you should talk to someone. Christmas is the worst time of year so maybe it is just temporary and once the new year is year you will feel better but maybe not. I finally broke down and am taking something. I was having panic attacks ...
Rant as much as you want ... But please stay well too.0 -
Jo.....sorry, I'm following you around here, but Janet I agree with everything Jo is saying.
I also broke down (pardon the pun) and got some meds.....saved my life.0 -
Janet...oh, cr*p! This really is the gift the keeps on giving, isn't it? Here's my two cents...first of all, you are a fabulous, funny, strong and smart woman! You have been a great help to many (myself included) on this site. Now it's our turn to be there for you and get you through what is surely just a rough patch.
I agree with Joanne and Scottie...seek some help. We strong women are not inclined to get professional help when we are hurting emotionally or psychologically, but we go to doctors and get medicine when we are physically sick, so why not when our psyche needs some care? This is a temporary thing brought on by a step backward but there are psychotherapists out there who specialize in working with people who have had cancer (and some of whom have had it themselves) and they can be very helpful. It would be like being in a room with women on this thread but with an educational background in psychology! It might be worth a try. Sometimes just talking through your feelings with someone, without interruption or judgment, can be very beneficial.
One other suggestion...rely on Jim and others in your life for help during this rough patch. We all got some help from others at various points on this long road and this is just a detour. Remember what you did to get through chemo. and try to get back into that mode temporarily, just until this passes. Christmas is a tough time for a lot of people, whether or not they have been through what we have had to deal with. I find cyber-shopping to be very tolerable as I can sit and drink wine or have some munchies in front of the computer screen, order things and then the packages magically appear at my door, often without shipping costs. That's how I did all of my shopping last year and it was very pleasant. You may want to try it.
By the way, did you get a ticket from the 12 year old cop? I certainly hope not.
I am excited for you about your trip. That sounds like it will be lovely and I think Jesus would be very happy that you will be sipping a Pina Colada to celebrate his birth. That might be just what the doctor ordered and you deserve it.
I know that 2013 has great things in store for you, Janet. You will be in a new home, get that surgery behind you, get on top of the LE and then, you can continue to put this time in your life behind you.
Come back here often, Janet, and rant all you want. We are all here for you as you have been for us. It will get better. Just another bump in the road. Hang in there, friend.
Anne-Marie
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I was going to start a thread saying something similar as I feel just rubbish, and getting worse not better, if I hear anyone talk about cancer as a fight I shall scream, its not a fight its a never ending exhausting challenging painful marathom, a challenge you would never even wish on your worst enemy............I find myself hoping that my challenge does not last too long as I am worn out........I am mid 50´s in age
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Lily, it is a constant battle. The first while we a fighting the physical and then we need to take time to heal emotionally. Rabbit said it ... We are strong women and not used to asking for help. It is not a sign of weakness to ask for help.
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I felt a big drop when we decided to switch my AI as I was so stiff and sore after 3 mos on Arimedex. I felt- I am willing I be a compliant patient, do this pill for 5 yrs... But then I began to realize it would be too much. Mad at myself,(why didn't it just be ok???) probably gloomy from lack of estrogen. Been on the new one (Aromasin) about 10 days. Still unfreezing my right shoulder with PT but sometimes it wakes me up at night. I take Ativan a few times a week for anxiety , ambien 3-4 times week to sleep. See my therapist every 2 weeks My doc prescribed Lexapro but I am waiting to see how Aromasin is first, add one new thing at a time. Any of you take something like that? Did it help? PS work is goin fine, I fact it is easier in some ways than being home.
Janet, what's the move for? Near or far?0 -
Janet, I so feel for you. I was in your place... perhaps worse. I lost every bit of happiness and hope for quite some time. I had to go hide in my closet in the mornings before getting out of my room to get my kids off to school. I would curl up in a ball and scream and cry. Other times I would stare at the belts hanging in the closet and wonder if I could end the pain quickly.
There was no quick ending. Anti-depressants don't work for me and waiting 8 weeks would never do. I went to the gym everyday and hoped the endorphins would kick in. I can say that one thing that did help was using Adderall XR for a bit. I know some Stage IV ladies who use it and it has an almost immediate effect. I used it on and off for a week or so and then everyday for about two weeks until life took a pleasant turn around.
The lymphedema is what also took me over the edge. Here I was thinking that I just had to grow some hair and I could get back to normal. I even had a long talk with my BS about wanting to prevent LE by taking the least amount of nodes possible. I was three months out of radiation and then bam, my breast swelled. Everyone has different opinions, but I knew what it was. Breast LE isn't like the arm deal. Breast fluid just doesn't want to move out and stay out. I was doing MLD 5 times a day and seeing a PT. To make a long story short, the breast went down a little (or I just got used to it).
I was diligent about protecting my arm so I went for a fitting and got a Juzo sleeve and gauntlet. My sleeve is grey with white tie dye and I wore it on the plane for my Thanksgiving vacation. My fingers have swelled too and I've got something called trigger finger. I don't know if this is LE related, but Janet, this all sucks big time. I was so healthy before BC and now my body feels old. The bright side is the sadness passed and my mind is sharp again. Your situation will turn around. If you take objection to anti-depressants, perhaps the Adderal would do. Just be careful if you have an addictive nature. Let us know how you are coming along... WE CARE!
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Amen. The arm is annoying, the back is really annoying, but the breast just p*sses me off. It's not enought that I've got a scar, that it might be trying to kill me, it's gotta swell and throw hard spots? It's heavy and I'm lopsided. Most of the time I can reply "I'm fine" to the "how are you's" and really mean it. But some days I want to scream, kick my feet or just sit and cry. And of course nobody who asks really wants to hear it.
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Basket case here too. ;>) And nobody wants to hear about it. They seem to be incapable of understanding the enormous toll this can take on us. I know not everyone with breast cancer flirts with psychotic breaks, but for crying out loud, when you see someone you know and are supposed to be friends with, when you see them in pain, crying, even if you don't think it is a thing worth crying about, why would you just drive away? I have learned that pretty much nobody cares (just talking about me here -- hopefully you have actual friends), and I have learned that I actually needed them to care. So, they just added to my list of stressors since February: finding the lump, awaiting diagnosis, diagnosis, surgery, complete change of diet, early retirement, changed financial status, being denied assistance (their fault -- I qualified), broken finger that incapicitated me (the splint that was used), having no one do anything at all to help me, realizing nobody around me gives a rat's behind, feeling isolated, going off the SSRI I was on (SSRI's are linked to breast cancer), damage to my house from Hurricane Sandy, getting my car broken into, and then the jerk who stopped his car to tell me it happens all over but then drove off when I started crying when I tried to tell him I know it happens all over but that I was full of all I could take - then I couldn't talk anymore. If the roles were reversed, I would have gotten out of my car to give him a hug. So that led to a huge surge of anger and self-pity. Couldn't get a shrink appointment until 12/13. I actually had to hide pills from myself because I was having sudden strong urges to down bottles of pills. So yeah, not a good time here. And definitely not looking forward to Christmas. This is no time of year to be feeling lonely and poor.
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Ladies...so sorry about these latest rounds of difficulty. This just stinks! It shouldn't still be a roller coaster ride, but it is. Maybe it's because of the holidays...
Dunes...I'm sad that you feel lonely. We are here for you. I, for one, have missed you on this board so even though you feel crummy right now, glad you are back here with us. Please reach out to us as needed.
Cindyl...sometimes when people ask me how I am, I say, "well, how long do you have?" It is pretty funny to see their reaction because some days, I could go on an on answering such a simple question!
Rocky...as usual, your posts are great! I love reading them because you tell it like it is, but are very positive, too.
Lily...Joanne is right, it is a constant battle. Everyone says it gets better with time. I hope that is true.
Lisa...I'm not familiar with those particular meds, but am sure someone else will chime in. I hope they work for you.
Hang in there, everyone. There are a lot of people on here who care deeply!
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Hey fellow Basket Cases, and Former Basket Cases,
Thank you for so much your support.
Joanne - I'm so sorry to hear that you've had panic attacks. 'Breaking down and taking something' is sort of the same as taking control
Scottie - Thanks for your input and advise
Rabbit- Thank you for the words of encouragement. I will assume that this is just another bump in the road until it's time to think otherwise. I'm so grateful to have a place to go when I'm starting to slide - all this support has propped me up time after time, and is one of the wonderfully reliable things in my life.
I've never done well in therapy - though I believe it's a matter of the wrong shrink. If necessary, I'll look into it in the new year, but for now, I'm going to rely on my sister and mom, (who will be joining me by the pool for Chirsmtas mojitos) and who will give me their kind, and undivided attention.
Thanks for the shopping tip, as well. I can certainly manage snack of wine and cheese in front of the computer. Everything is easier in sweatpants.
And yes, I did get a ticket. F*cker.
Lilly - Sorry things are so hard. I feel worn out too, but not completely. Just when I think that I'm about to deflate for the rest of my life, I find a little bit more strength. I hope you do too.
Rocky - Someone has moved my ends! And just when I thought they were about to meet.
Apparently life has other plans. But what you said about feeling old is exactly how I feel. My body feels old, and it's a feeling I'm not used to. After reading what you said, I realized that my mind is also starting to feel old. That never occured to me. I'm glad to hear that you're sharpening - I plan on getting there too. I think my mind and body were sliding together but now they need to act independently, so even if I can't whip my body into shape, I ca take control of my brain.
My sleeve is flesh coloured - like a giant pork sausage - but I found a company called Lymphe-Diva that makes rocking compression garments. Toronto, where I live, is quite chilly - but I plan on getting a fancy sleeve for the spring.
Dunesleeper - I have faith in you. You've climbed your way out of shitty situations a few times, and I'm betting you can do it again.
Here's to getting through the holidays intact,
Janet
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dunesleeper, you have had the ultra challenge assignment. I get it, though i"m not quite as bad.... trying to find some joy again. even if I only live a year! I tell myself- my goal is to make it through this school year. I have had many of the thoughts you describe. Maybe you can call your shrink and say you are thinking bad thoughts and cant wait 2 weeks.... do you have Ativan or something? That slows down my racing heart and helps me sometimes. In fact right now I'd like to take it every day. I bet the holidays make it harder for us.
Well, just know that there is a harried school principal out in sunny (soon to be rainy) California who is sending you sympathetic hugs.
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Helloooo--had a mastectomy, 12 lymph nodes gone...body would only take 4 rounds of chemo, but I had 36 rads...and it's been one month since end of treatments. Been on tamoxifen since chemo ended in Aug. I continued to work thru chemo only losing a few days after treatments. Rads knocked me down for a few weeks and then I got back to work. Fatigue seems worse now and I didn't think that was possible. It's weird how bones & joints ache. Vertigo also random. Am still sleepless, tasteless, can't smell, but worse is the cold like symptoms. Lymph nodes in my neck are staying swollen & painful. Had one oncologist for chemo...and 4 different oncologist for rads. Just met with surgeon who only wanted photo for her file and she switched my tamoxifen brand hoping to help me with the flu like symptoms. Dr says my first MRI can't be for another 5 months. My spirits are staying high, but my body isn't on the level. I am in Germany.
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Janet- At times I, too, am a BC BC (Breast Cancer Basket Case) and just wanted to let you know that your post on 11/25 really spoke to me. Guess we're all in the basket together. I think I would have moved on by now but bilateral LE as a result of a PS f'ing up (my opinion, can't prove it, long story, blah, blah, blah) has ground me to a halt. Just wanted to tell you that you sharing your story made me feel not so alone in mine so thanks for that. (((hugs)))
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Ladies-
Just read your post and Thank God you guys get it! I was like a lot of you when you state you were and felt better during treatments. I am losing it slowly and I was so strong! I am having a realy hard time with sleep due to hot flashes and a frozen shoulder after surgery in August. The frozen shoulder has been the worse of it all for me. I have joint pain already from chemo but this takes the cake. I can't sleep! I don't know who I am anymore!
Thank for sharing and letting me know I am not alone in my feelings. I might go get some depression meds to see if this helps me because I don't know how much more of this stuff I can take.
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Mcook- my frozen shoulder was the worst pain I ever felt. Worse than BMX and childbirth. My orthopedic dr gave me a few steroid shots in the shoulder over a couple of months and pairing that with PT really helped. I am not in all that pain anymore and my range of motion really improved too. Good luck!
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I kind of like that we are all in the basket together, except that I don't really wish basket-case-ness on any of you.
I don't know what the shrink will provide me on 12/13, but until then, I do get a lot of benefit from the xanax I have. I use it as sparingly as possible, but I definitely do a whole lot better when I take it. The days when I take it, I can be nearly normal: do homework, housework, exercise, and focus on having a more positive attitude. The days I don't take it . . . well . . . we won't talk about them right now.
Well, maybe just a short story. I didn't take any today until this evening. By that time I was in full-fledge whole-body-shaking tight-as-a-tourniquet anxiety attack mode. So my evening went better after that. However, earlier today I went out and got my hair cut. I just sat in the chair and cried. I felt bad for the beautician. Poor girl. She had a BC BC in her chair. lol.
I have school tomorrow. I think it will be good to get back into a routine. The bit of routine I had got further thrown off by the Thanksgiving holiday. Oh, but it is going to be an icky day tomorrow: rain and snow. Oh well.
Oh yeah. I bought a pair of jeans from Goodwill today. Now I have one pair of pants that fit me. Yay. I'm going to wear them tomorrow. I'm tired of having to wear belts to keep my pants up.
I wonder how much hormones come into play with all this crying crap. I had already been through menopause, but taking the AI and the DIM and other supplements that reduce or redirect estrogen might have something to do with it. It is probably mostly the SSRI withdraw, though. That and losing the sense of a healthy body, the sense of relative safety, the sense of trust in the future. Yeah, that life-changing stuff has shown us how vulnerable we are. I don't know about you, but I have a lot of fear to work through.
Hang in there y'all.
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