Why was I stronger DURING treatment than I am now?
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CinD, we must be twins separated at birth! I love Richard Simmons, & almost every day listen to a 'Reduce Stress & Tension' hypnosis CD.
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Hi Sis, I mean Ruthbru.
That's too funny. It is amazing how much the exercise tapes and meditation CDs help. I just love that the CD I use helps me to sleep. That was a big problem for me for awhile, especially when chemo sent me directly to menopause and hot flash hell. Good sleep makes such a difference in how I feel physically and mentally. Rabbit, I know what you mean about family and friends thinking that once treatment is over, everything is fine. All they can really see is the physical part of what you've gone through. The mental part is something they can't really comprehend unless they've been in your shoes. They want to believe everything is fine because they can't stand the thought of everything not being fine. I've learned who I can tell when I'm feeling fearful and who would rather not know. It's not that they don't care, it's just that some people have limitations on how much they can handle. Funny, but recently I visited my brothers and their families for the first time since my treatment, and no one asked me how I was doing or anything about my health. It was kind of refreshing, made me feel normal again as if I never had cancer. And I didn't catch anyone peeking to see if they could tell my fake breast from my real one.
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CJRT - I was diagnosed the day before my first baby turned three months. I totally "get it"! My little one didn't have much hair as an infant - so we were bald together! Lots of hugs to you!
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Thanks so much, Nordy! Your profile pic makes me smile.
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Rabbit - Can I ever relate to this! Thank you for starting this thread. I actually came on the board today cus I'm feeling so sorry for myself (and bitchy) that I was looking for a place to talk. As GracieChase said - I too have lost my warrior.
I was FANTASTIC during chemo and my two surgeries. Acoording to my friends I 'sailed thourgh cancer'. I went to yoga, made soup, painted, started a blog, went for walks, entertained, made cookies for the chemo nurses, and bought all sorts of things to accessorize my overly-priced fake hair.
Today, three months after chemo, my toenail falls off and I have a complete meltdown! I've cried a little on-and-off during the last eight months, but nothing like this. I thought my nail polish was coming off, but it was actually the whole nail. I just don't have any energy left anymore for side effects. I'm tired of being tired and I just want my hair back, my breast back, as well as the income I would have had if I'd worked during the last eight months.
I've been very interested in hearing about friends reports about trips, and fun things that they've got going on in their lives. But now I just feel jealous that I haven't had such a good time. At a family dinner last week, my sister-in-law was talking about her giant luxury car, and how it's too big for the city. I couldn't find one speck of humour in it. I thought 'Is that your biggest problem?', and I excused myself to go and watch TV with my neices. Grownups can be such a pain in the arse sometimes.
And lately I've been snivelling in the changing room at the hospital after radiation. I don't want anyone touching me anymore , I don't want to expose myself, and I don't want a bunch of young strangers looking at my ugly scars. And I especially don't want to wear a hospital gown ever again. Unfortunatley, I have DIEP reconstruction coming up in 6 months, so I've got a another hurdle lurking ahead of me - again.
So yes, I am a strong woman who kicked ass during treatment, and now I am all over the place. Today, I have no advice to offer, cus all I want to do is climb under my duvet, get drunk, and watch Bridget Jones.
I also would like to say Rabbit, that no matter how shitty you feel right now, you should be very proud of all you've accomplished since July. You managed to acheive a lot, and take care of yourself, your home, and five kids.
Eventually, our warrior will come home.
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Hi Janet...I'm so glad you posted. Thank you for your support. I have decided that the way we are feeling right now is a dirty little secret that noone tells you to expect after you are done (or almost done) with treatment, and then BAM! it hits you like a ton of bricks. I know that I kept selecting arbitrary dates when this experience would be behind me, but I don't think that is working. I do take a lot of comfort in knowing that people like yourself are having the same issues. There is strength in numbers!
Like you, I sniveled many a day in the radiation changing room. And then there would be the days tears would stream down my face while I was on the table because I couldn't believe how humiliating it was to be half naked in front of so many people on a regular basis. It became a joke between my husband and I about how many people other than him saw my boobs and felt them up. Ha, ha!
You are right...our warrior will come home. She's just tired and needs to regain her strength. I bet yours will be back just in time for that next surgery. She will get your through it. She has obviously done a great job so far.
Stay strong, fellow ass kicker!
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Rabbit - Thanks for that. I will allow my little warrior a holiday. Hopefully she is at a spiritual retreat in the mountains, and not at an all-inclusive in Cancun.
CinD - I have a recommendation for you. Have you heard of Belleruth Naparstek? Wonderful. I used her 'Guided Imargery for a Successful Surgery' to get me through my second operation, and the difference in my attitude was amazing. I'm not really meditation-y, so I was a bit skeptical, especially when she encouraged me to gather my 'magical friends and protectors'. But I really felt comforted by my magical friends! And on the days I listened to the CD I felt much more calm and connected to myself,
She also has CD's for general well being, stress, sleeplessness, and a whole bunch of other things. You can get a freedownload off her website.
http://www.healthjourneys.com/br_bio.asp
Janet
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I am so excited I found this place! My friends try to be supportive but I can tell they just don't "get it" . I lost my sister to BC 17 years ago and she told me the same thing. I thought I understood what she meant, but now I know you really can't until you have been here. I pray everyday for the bad feelings to lift. Alot of days I feel like a failure because they won't. I also wonder if this is my life now. I walk almost everyday, am on meds for depression/anxiety, and anastrozole. Also seeing a phsycologist for talk therapy. Maybe I am just impatient. The cancer tx seemed easier than the recovery does. Thank you all for being here and listening.
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Waving hello to all my bc sisters. Its only day 1 of recovery from all that crap. Dont want to get dressed cause that TE hurts from rads, but allowing myself to stay in jammies probly not good
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Rabbit43, I would like to add my thanks to you for starting this thread. So many times, I have felt alone in my depressed feelings after treatments ended. All my family and friends were so happy for me and they were puzzled that I was not happy, too. They meant well, but they just did not understand the life changing experience of BC. Thank you for creating a space where we can express our feelings to people who truly do understand.
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Before I finished radiation in Jan, I imagined dancing out of the building my last day and whooping it up. Instead I got a card with my next three doctor's appointments, realized it's not over, and cried all the way home. Just yesterday I expressed in an email, "I'm finding that emotionally, going through treatment was easy. It's living with cancer for the rest of my life that is much harder."
I'm looking for a shrink, thinking about scheduling weekly massages, negotiating with my boss for a pay cut in exchange for more days off, and trying to be patient with my bad fatigue days.
Sending kind thoughts to all of you!
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Marilyn,
I can relate. I just finished rads yesterday, and I thought I'd feel a huge sense of relief, but I just got shuffled to another area to book my next appointments. Then I ran into a nurse who is very lovely, and she asked how I was, and I burst into tears. So she brought me into an examining room and her kindness just made me cry even harder. She asked if I had an 'self destructive' thoughts but I told her that, no, I just wanted my life back. My nice bras, my nice breast, my hair.
Then I came home and like you, realized that it was not over. I still have a drawer full of pills and creams, and numbness in my arm and a horrible grandpa hair-do. Also, I was hoping my partner would want to do something special to celebrate, but he suggested going to the depressing tavern down the street. (No!)
Also, I'm overwhelmed at the thought of going back to work next week. I have't seem some of my co-workers in eight month, and I've kept my circumstances fairly private, and I really hate dodging questions. If anyone used the word 'journey' , 'survivor', or 'how goes the battle?' , I'm going to punch them in the head.
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Janet...glad to hear that you finished rads yesterday. At least it's one less place you have to go everyday and that's a change in the right direction. I went to see my surgeon last week because I was worried about some swelling. While in there, I told him that I feel like I'm a crazy and unreasonable person now that my treatment is over and that the swelling was probably a figment of my imagination. First, he told it is entirely possible that I am a "crazy, unreasonable, swollen person". After I laughed, I cried (so embarassing) and he told me to remember that the year after a cancer diagnosis is worse than the year of the diagnosis. It's so counter-intuitive, but seems to ring true. It's not over, but hopefully the worst of it is.
Seeing people I hadn't seen very often has been tough for me, too. I really can't stand the pitiful looks with the accompanying, "how ARE you?" I know everyone means well, but it's not really helpful. I found that telling them it was manageable and that I am moving forward with my life helped move the conversation along.
Btw...I noticed on one of your earlier posts that you have a blog and want you to know that I have really enjoyed reading it. I laugh out loud because I can really relate. You have a gift...very, very, clever stuff! You might think about writing a book at some point.
Hang in there and good luck heading back to work.
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I understand the crying that comes when someone who truly cares talks and listens to you. I think they are healing tears. You are not alone.
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Rabbit -
Crazy, unreasonable and swollen sounds just about right. To that I would add fragile, tired and impatient. And since today I'm feeling relatively happy, I feel like I have a split personality. My poor partner/wingman doesn't know who will greet him when he comes in the door. All he knows is that he can't expect dinner, since my urge to shop and cook has gone right out the door, along with my stability and cute hair.
My girlfriend told me that I will need to accept living in discomfort for the time being. I'm someone who likes calm seas, so I needed to be reminded of that too. She's right - I will have to just ride the waves. (With a big box of tissue). Quite possibly, I won't ever return to my comfort zone. Who knows?
And also - I just assumed that crying in front of a surgeon is normal. You've got a big family and are probably used to being in control and staying strong for your kids, but being in the examining room with someone who's seen beneath your skin is a really intimate environment. After all, he's the guy who had your life in his hands. I saw my surgeon walking down the hall from a distance, and almost burst into tears. Your surgeon sounds understanding, and I'm sure he sees a whole lot of un-pretty emotions. And I hope that you have other people in your life that you can cry in front of without being embarrassed.
Thank you for your kind words about my blog. It's been very therapeutic for me to document the lighter side of treatment, and a compliment means more coming from someone who's going through it too. So thanks, and I hope your weekend is fun and sunny.
Janet
PS Here's my favorite saying of the day - Sometimes when it feels like things are falling apart, they are actually falling into place
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The posters on breastcancer.org save the day for me again! All of these comments have been very helpful. Thinking that the year after diagnosis is harder than the year of -- that makes sense to me, Rabbit.
During and just after treatment we sold the house where we raised our sons, I started a new full-time job after years of part-time/freelance, and we moved. All good things, but very demanding. For so long I've been thinking, "once [this] or [that] gets done, everything will be fine." Now that I'm unpacked, it's more like, "now that [this] and [that] got done, I'm going to be sad and cranky."
I looked for a topic like this because I keep waking up at night and roaming around. Last night, I started thinking that maybe I'm pushing too hard. I like SunflowersMA's "be gentle with yourself." My mom is in hospice (too far away to visit every week, and no longer able to talk on the phone) so I tried to keep thinking "be your own mom." (While I'm at it, maybe I'll go for one a little kinder and gentler than she was, lol! Hmm, maybe a few unresolved issues there too...)
I have the exercise thing covered but I'm going to try a guided meditation as recommended. Guided imagery works well for me but sometimes trying to drum it up on your own can become another way of pushing yourself, I think.
So thanks, everyone.
P.S. I also love "Sometimes when it feels like things are falling apart, they are actually falling into place," Janet. That's going to be today's thought for me too. And I checked out your blog -- it's great, thanks.
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Chicago...wow! You took on a lot during and just after treatment! Selling a house, moving, taking on a new job and dealing with mom is alot to take without the challenges of breast cancer. I think you should give yourself a break...you certainly deserve it. I am the queen of "when this or that happens, things will get better"...it's like goal setting on steroids! Sometimes it works and sometimes it doesn't. My latest tactic is to try and stay so busy that I don't have a chance to think any negative thoughts. I'm not sure if it is working or if I am just putting off the inevitable of dealing with how breast cancer has changed my life forever. Food for thought...
I read a great article today that suggested making a list of the things you used to do that brought you joy and start doing them again, one at a time until they become routine. I liked that idea and decided that I will start to do it. Anyone care to join me?
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Chicago1958 -
Your post-treatment year sounds wildly challenging - I've heard of people who have a nervous breakdown just from moving. You certainly coped with a lot.
Good luck with the guided meditation. I'm new to it - but I really recommend have someone else's voice guide you through it because your mind will be busy enough without thinking about time, and structure, and stuff. I just got my sister a guided meditation CD that she was going to listen to in her car - but I talked her into using it in bed, instead. I find it works best with no distractions so your mind can travel as freely as possible.
On a lighter note - I dyed my hair today. No more grandpa hair for me! However, my stylist went a bit dark, and now I look like a Ken Doll. Hopefully things will lighten up - for me, and my new hair style.
Janet
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Thanks so much for the supportive comments. It really is gratifying and much appreciated.
I ended up quitting the full-time job today, to go back to freelancing. I've worked that way for years and it has its own disadvantages, but nothing like the stress of this job, which involved a lot of being responsible for other people's deadlines that you can't control. It was a hard step to take, because I really liked the IDEA of the job, but the work itself wasn't a good fit. Glad I pulled the plug on it!
Now I'll start on that list of things I used to like to do.
Hi Robo!
A Ken doll does give an entertaining mental image, Janet -- one of my friends had a short cut once that she said made her look like Barbie's friend Midge and I couldn't unsee it once she said it... I'm sure it will take you a while to get used to yours. I had mine pre-emptively cut short when I thought I'd have chemo (saved by a low oncotype score), and it's gray -- total grandpa hair. I'm going to try to find a stylist who can take me from grandpa to stylish, and until then I'll slap on that makeup!
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Chicago -
Congratulations on quitting your job! Yahoo!!! Good for you for stepping away from something that is a bad fit. I find that so inspiring. Especially since I'm going back to work on Monday and I keep wondering what the f*ck I'm doing, and if this job is right for me anymore.
Today I went to a yoga class, and in the washroom was a saying about how we are the only one that hold the key to one's most valuable world. And we are the only ones who can turn that key and enter. I found that inspiring too. Then when I came into the studio the teacher said that she liked my hair - so I started crying. She told me that crying is allowed, so that made me cry more.
Then my face was glistening a bit after class and she said 'you look radiant'. All I could hear was 'You look radiated' - which of coursee, I am.
I'm glad to be back in air-conditionned making a mental list of all the things I used to like to do
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Hi Janet --
Oh boy. It's all so hard. "You look radiant" was... maybe not the best choice of words. I'm glad you see the humor in it all. (I'm going to upload an inspiring radiation poster for you once I figure out how to do it again.) I was so glad to be done with radiation, but now I'll feel twinges in the booblet and wonder if it's done after all.
Will Monday be your first day back to work since treatment began? I hope it works out well. Your quote reminds me of the old Eagles song: "So often times it happens, that we live our lives in chains, and we never even know we have the key."
You're everyone's hero for stealing your gown...
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I was very moved by all the posts and kind words I have found here.
I am now a year post surgery, finished with the 8 rounds of chemo, the 35 days of radiation therapy, and now on arimidex. I have been so very blessed with great support, good friends and family, and that I am older than most here and have had a great life and career, now retired. I used to be the Energizer Bunny, the chemo knocked me flat, and I have been lethargic ever since!! I don't have my arm and chest back yet, they still ache with a crushing pressure feeling in my flank and armpit and tingle constantly, and yes, the first thing I usually think of is my affected side, since it is still quite a bothersome area. I am tired of thinking about it, feeliing it, and talking about it. i want to put this "journey" in a drawer and move on with life! I, too, feel like I am suddenly rudderless, cast adrift.
I used to be an interesting person, but I cannot seem to focus, finish projects or regain my stamina. I refuse to let this experience be the center of my life, and yet it is...... And to top it all off, my cholesterol has suddenly gone up 100 points, I am wondering if others have had their cholesterol go haywire after the chemo? So, although I am thin, eat healthy and exercise daily, I find myself suddenly on a really restrictive oat bran/oatmeal/high fiber diet. Well, such is life, I guess.
I am planning to have the prophyllactic right side mastectomy in October along with reconstruction, but with the discomfort I am currently still feeling, I hesitate to add to it by more surgery. I thought I was stronger than I apparently am, and it is discouraging. I went out without my wig today, and wasn't comfortable in public with the inch long curly mop I am growing....and I am tired. Thanks for listening to me whine!
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Chicago -
Love the poster!
Yes, Monday is my official first day back at my regular job. For the last two months I've been working part-time at a little art gallery which was fantastic. And dealing with strangers was no problem.
Over the winter/spring I'd run into colleagues, but I was always wearing a wig and a hat. Now it's just a hat and my tiny hairs. I would have stayed at the gallery forever but it was only 15 hours a week at minimum wage. So, it's time to top up the bank account. My secret plan is to take some time off in the fall - I want to go to Paris.
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Janet I was amazed at how normal my colleagues were when I went back to work. I felt so self-conscious, but they were the same old group and I only caught one person "looking". I hope your experience will be the same. I also have the split personality. Fine one day, a basket case the next.
Linda I am so tired all the time, and tired of being tired all the time, and tired of having to keep on going to work even though I'm tired all the time. Is that enough "tireds" for everyone. I am also one year post-op and didn't even need chemo and radation. I hope that this is not a permanent condition but it kind of feels like it is.
Chicago reading your post I thought "Oh course you're a mess, look at all you've been through", which kind of helped me realize I have also been through a lot. Breast cancer, a close relative died, my son has a chronic disease, and before BC, I had pretty much been taking care of my mom. Through all of this I was expected to go back to work in 6 weeks, which I have to do because I basically support our family and have the insurance. And now I feel like I have to pretend that I'm normal at work, and everyone at home pretends I'm OK and expects everything to be back to normal, and it makes me feel so alone that no one understands. Except for you ladies, of course.
And oh Rabbit, I hope he didn't mean the WHOLE second year is worse. Nine more months to go for me?
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Linda, your weariness came through so clearly in your post. I'm sending you good thoughts and support.
And TwoHobbies, you are carrying lots of people on your back, it sounds like. Now we're back to the "be gentle with yourself" idea. Can you remind people of what you've been through?
Not that I have been able to do that --- I know what you mean about pretending. I am working on trying to be more honest with people but it doesn't come naturally. The full-time job that I just gave notice to? I got a call yesterday asking me to reconsider. They want me to tell them how to structure the job so that I'll be happy with it, but I'm completely at a loss asking for what I want. What I want is to lie on the sofa, read a lot of books, and go to Paris with Janet, I think...
Janet, if the job you're returning to doesn't involve writing, bag it. That's my advice! Good luck Monday and I'll watch for an update.
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Chicago - Thanks for the ego boost. I needed that.
Janet
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Ladies...these latest posts just remind me of how unbelievably strong we all really are. Look at what we have all been through, and even though we are basket cases at times and dealing with all kinds of stress and pressure while being completely exhausted, we are managing to move forward. It's good that we have one another to lean on and I am convinced that, although we will all have down days/minutes/hours, we will be better for it in the end.
Linda...I'm guessing it's a tough time of year for you. I am dreading my one year anniversary from my dx because I know it will bring back some pretty bad memories. I am thinking of you in a special way this weekend.
Chicago1958...good for you for quitting your job. It's so great that they want you back...good to feel wanted. I hope it will work out, if it's in your best interest. And if it's not...forget it!
TwoHobbies...I'm sure the WHOLE second year won't be bad. Hopefully just some fraction of it.
Janet...good luck next week. Let us know how it goes. I'm with Chicago1958...if you don't have a job that involves writing, you should! I must say that I get really excited when I see that you have a new addition to your blog.
Btw...I thought you all might like this...I recently told my husband that when I am in the sun (at my daughters' softball games, not laying out on some beach - lol!), I find that I have the strangest sensation...the radiated part of my chest literally gets hot from the inside out. He told me that's exactly how a microwave works....thanks, honey! Next he'll be telling me to pop some popcorn or heat up the leftovers on the right side of my chest. Ha, ha!
Hang in there, ladies.
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I absolutely Love this thread!! I am just 1 week out from finishing radiation. I broke down walking down the hall to the rads wating area, cried on the table then all the way back to the dressing room. Now I am trying to figure out just how to get back to normal; but am realizing that is never going to happen. It's funny how now I am done with treatments, my family and friends think I should be acting normal, like my pre BC self. Before Oct 2011. pre surgeries, pre chemo, pre radiation..
I am starting back with my therapist next week, been placed on new depression meds and just trying to figure out what this new normal is. I cannot stand when I hear people complaining about the frivolous things in life. I hate the fact that my 24 year old son will not look at me when he talks to me now. I was waiting to get an xray Friday (old back injury) and a nurse commented oh my "haircut"- I said back to her, "It's not a cut, it's hair growth". I mean really, I am sitting in a hospital radiation area, with a pink "survivor" short on!! I think she felt stupid..
I am still having pain in the radiated breast, fullness, hardness and shooting pains. Lost toenails a week ago, (chemo, the gift that keeps giving) My hair is growing back, lost eyelashes, they are coming back, now the brows are going "again".
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Hi Lory48...so glad you posted. Congrats on being done with rads. Timing wise, you are on the right discussion board, as I am sure you have seen from the previous posts. We are all trying to find our way to whatever our lives are supposed to look like right now. It's definitely not easy but the women who post on here have made some of my rotten days a lot better.
I bet that nurse feels stupid about the hair comment...she should. Sometimes people amaze me in the bad way. When I was growing mine out, I had a "friend" ask me if my hair was growing back yet. Before I could answer, she literally reached up and took my hat off my head to see for herself. It was very embarrassing and something I won't soon forget.
I hope your discomfort subsides soon. It takes a little while, but it does get better.
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