Great saying about depression
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Determined: It took us a long time to find our way back from BC. It nearly killed us but thank goodness the reconstruction actually helped with my confidence level. After a year of complete disinterest in sex at all we finally have a more normal sex life, but it wasn't easy. Mostly I had to go through the motions for a long time until I could actually feel like it. Always, it's important to discuss these things with a professional if there are other issues as many who are on the hormone drugs have devastating side effects. Hugs!
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Thanks, my husband is so complimentary and wonderful. He truly has been my hero. It is not him at all it is me. I am just not comfortable without keeping a bra on. I hate that. It is so different without the sensation and I don't have nipples. I am told my reconstruction looks good up to this point. Maybe when the rest is done it will make a difference. I want to but then I can't I just miss the closeness so much.
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Determined- I have only had a lumpectomy but have major intimacy issues. I do blame this on the Arimidex and me. but we have found that just cuddling is enough for now. There is never any pressure but I feel that intimacy is missing. BC is a major life changer! Everyday I say that maybe today will be different but it isn't. Maybe tomorrow.
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This is one of the areas people don't understand. BC isn't over when the incisions heal. I am so sad about this.
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I was devastated when I learned my nipple would have to go- I could have had a lump but the nipple would have gone with it so I opted for a mast with recon.My nipples were VERY important to me sexually. I still have one but for me having two was where it's at. There is a long ongoing thread called" I want my Mojo back" that has a ton of good info on overcoming some of the difficulties.
I feel like I am starting to finally get over the loss and find new ways to experience pleasure 2 years out. I am comfortable with DH seeing me- but if he grabs the recon breast- the lack of sensation on that side is distracting for me- makes me think about the loss. I do feel like I am getting used to it with time -but the difference in sensation is kind of an unwelcome reminder of the whole experience. It's like part of my brain goes- oh why does that side feel different? oh yeah- you had breast cancer.
For a long time I had trouble with DH doing a certain thing sexually bc that was what he was doing when I found the lump and that was a reminder too. But that too is not as big of a deal as it used to be. It really does get better with time. I hate using the term "new normal"- part of me still thinks- to hell with that! I want the old normal back!
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I agree with you on the intimacy issues, we have to learn everything all over again.
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My healing is all emotionally driven now. I don't trust my body to do anything right. Cancer was my biggest fear and that still stands. How is it possible to return to all things normal? I am in constant fear about "what's next". I am so lucky to have a family that understands and accepts. But I want my old self back.
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We all have every right to be sad and having to learn everything over again sucks. I miss the old me. I miss my breast.
Does anyone else see old pictures of themselves and just feel sad? I envy that woman in the picture. I lost my drivers lisc during chemo and had to get a copy- mine was taken just after getting back from my honeymoon a year earlier at the time- I was tanned, had long hair, smiling big. Not the pale puffy bald person- I just bawled. I recently lost my lisc again and had to get the same copy- and well at least I have hair and eyebrows now. I feel this weird disconnect esp with pics taken in the year prior to dx- the cancer had to have been there- I just hadn't felt it yet. I just look at the pics and think "that girl had cancer but she didn't know it."
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You would think by now some big physchologist would have this part of BC figured out. The physcologist that worked with me right after dx had nothing to say when I asked her about her cancer.Of course she was going by the book! What a fool. At least know what it's like when a DR. tells you that you have cancer. Nothing is quite the same again. I know it is different for all of us, but any suggestions are sooo welcome!
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I find that by keeping my chest flat I don't get the stupid comments, like "it's all over now, right?" and things like that. I have to look at my flat chest, so everyone else has to as well! It is like my shield and I wear it with pride. I fought cancer and I won!!!
I had a job interview a couple of weeks ago for a job I didn't even want (such good practice!) and I forgot during the whole hour about my cancer. It was all about what I was about, not how I looked. It felt good. I do that every once in a while so I can say "no thank you" to a new position. It stuns them, but prepares me for when/if it has to be for real. I like to know what I'm worth.
I cannot imagine wearing a bra again!! The relief on my skeletal system from the release of weight has been tremendous. I wear all my pretty clothes and still feel like a lady.
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Alyad - Wow! I thought I was the only one who hated looking at my old pictures. The girl in the phots is not me anymore. She's too happy, too innocent. I'm just not her and feel like I'll never be her again. I cannot embrace te new me. My avatar picture was taken before I found the cancer. There is so many things that have changed me mentally. I can't type anymore because I am crying too hard. Sorry.
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Oh man.....I can't believe how the posts of the last several hours have said everything I have been feeling. I miss my breasts and the intamacy so much. My PS did a great job...it's just....they're cold....they don't feel anything. I don't mind my DH touching them, but they feel cold to him...not a great turn on, especially when he knows how much I used to enjoy it and now I can't feel anything.
Alyad - I have the same problem of intimacy reminding me of what once was... and then the sadness interfers with the moment. I see "before" pictures and think how blissfully ignorant I was and how much I took for granted.
Veggy - I'm so sorry you are crying, but so glad you know you can cry here. There are just times when all that has happened just hits me out of nowhere and I cry. I like to write lyrics and have been trying to put my journey into words. My working title is '"The Wound That No One Sees." I'm trying to convey that though people may think our physical pain is over, below the scars our hearts are still broken. I know time and God will mend the wound, but it's part of the journey we walk alone.
Mellysu - I know what you mean about not trusting your body. I had 6 surgeries in 17 months, I wanted so badly to keep one breast and then they found cancer in the other breast just a year later so I had the second mastectomy. I was having periods until my mastectomy and I guess it threw me into menopause. Now I'm experienciing all this muscle and joint pain which they attribute to menopause. The lack of estrogen has made sex less comfortable. I feel like I don't even know my body anymore.
I feel hopeful in reading that many women that were at this stage say it gets better. I'm looking forward to being in a happier and more accepting place in a year from now.
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I know life will not get back to "normal" as before, but it makes me feel so good at times when I am low, my DH or DS says or does something that makes me feel better. Like a hug, a touch or a word. My 20th anv. is in April this year and I thought about a celebrate health and happiness party or maybe just dinner for two.
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So many of us seem to be in the same place right now, feeling the same emotions. So how come no one talks about or warns you about this stage of the whole BC thing? I remember my PS telling me before my MX that afterwards no one will even be able to tell I had a MX (got to save my nipples, incision under the fold of the breast, recon) but I don't care that no one else can tell.....I can! They feel cold, hard and unnatural and the constant numbness makes it feel like something's super glued to my chest. And like all of you I miss that aspect of intimacy. Just never sure what role the new "girls" are supposed to take now. Do you pretend you feel something? Do you ignore them all together? Do you cover them up? It's just so weird. Maybe barbe has the right idea but I'm afraid I'm not that brave.
Just wanted to say I could relate to all your posts so much so (((hugs))) all around. (Especially you, veggy. I hate to think of you crying alone. Wish we could all be there with you.)
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Thanks Kate. If it wasn't for the support I get from this group, I would truly be alone. Most of the time the feelings that I have I think is just my brain being twisted but when I read that someone else is experiencing the same thing, I think, "WOW! I'm not the only one". Then I start crying.
I look at the old pictures of me and say, "That's Valerie". I look at the pictures taken now and they are not me. I feel like I want to change my name for the "new me". The old Valerie before BC is gone. I'd don't think I will ever be her again. The "new me" needs a new name- a new identity. I told my husband that I want to change my name and use my middle name or some form of it.He doesn't know what to think.
No one ever warned me of the after BC life. ARGH!
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Valerie, I'm dealing with the same issues. I tell myself The old you is still here, you are just wiser to life and better informed to the fragility of life. I still love my family, friends, job and will but cancer will not take my spirit, no way...it can take everything but not my spirit. You've been through hell and have come out the other side, that is the definition of strong and determined. I've learned how strong I can be when I have no other choice. Does it make me angry? You bet but Cancer cannot win.
Maureen
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Thanks Maureen. I have always dealt with depression my whole life. I'm on meds. I'm better when I am out of the house and with people. I still love my family and friends. My friend circle is growing and becoming more like family. I gave up my job when I had my children. I have homeschooled them. This is my 10th and final year of homeschooling. Hopefully this summer when my youngest. graduates I can have a life outside of this house. I might be able to concentrate on something else besides me. Only 5 months to go I keep reminding myself.
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Very interesting about home schooling. I'm sure they got a superior education, but what do you do about the social aspects? And gym, teams, stuff like that?
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Gave up your job? You took on one of the hardest jobs I can think of!!! HOmeschooling is quite the job! Take care of yourself, you need to heal all the wounds of this disease and it takes (IMHO) quite a mental toll. We can do this, come out the other side. You sound like another amazing woman as this site is filled with them. Good luck to you. PM me anytime.
Maureen
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Homeschooling/cyber school/public school
They have friends, lots of them. We go to religious services and they have plenty of friends from kids younger than them to adults. The cyber school provides many outings even rollerskating, skiing, and they are still allowed to be on the school districts teams and band there's karate classes and the YMCA, hiking, riding bikes. My boys never got into sports. I don't jail my kids up in the house and not allow them to be with people. (sorry that was uncalled for). I have argued the social aspects with too many people.
The cyber school is wonderful. The teachers are very willing to work with the students one on one as much as needed. We could not find that in a school setting. My sons went to a regular school up to and including third grade. My older son has Asperger's Syndrome and could not handle the noise and all the kids. He was in a spec ail classroom with 15 other students. The teacher was doing three separate grades at the same time. He would have several meltdowns a day (yes he was medication). My younger son has a touch of A.S. and he couldn't take the noise and commotion in school either.
At that time they did not have a special class or school for children with A.S. So my husband and I chose homeschooling. It's rough and at times I was overwhelmed and its a lot of work and dedication, but I wouldn't have done it any other way. Now they are great socially. They know how to talk and help all kinds of people, not just their peers. I have friends who are teachers who work in public schools and tell me how mature my boys are compared to there peers.
Sorry if I got a little preachy. Its been a long, tough, stressful road and then add in the BC. I believe the stress has been a part of the BC. If it wasn't for stress, how would I know if I was alive? (joke) I think that's way I have a hard time getting pass the journey with BC.
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veggy- I have always admired moms (and dads) who home schooled because I knew how much time, energy and dedication it took. You've made a lot of sacrifices and I say you should plan something wonderful just for you in 5 months! You deserve it! As far as the name change I say whatever gets you through!
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Thanks Kate,
I awlays said that after both of my boys graduated I was going to have a party for me. I was going to call it, "I Survived". Now it takes on a second meaning.
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kate thanks for putting it out there. what do you do ............. it is part of the reason I am not being able to be intimate. lay there, pretend........ I am so glad you got to keep your nipples I am still devastated that I lost them after 1 1/2 weeks. Angry at the surgeon for yelling at me when I was upset at losing them. This is why I want to strangle people that say it's over. Wow guess I am a bit angry today. crying yesterday.......... when does joy come
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Joy will come in little moments...in a surprise glimpse of something soft and furry maybe, or a brilliant sunrise or sunset. Joy will not come from someone around you but from somewhere within you. It's up to you to find the joy. Joy doesn't go looking for you.
Bloody, asshole surgeon anyway!!!!!!!!
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I call joy my "oh God" moments. This morning I saw a fox trotting across a field of snow. He was looking around like it was his first day on earth! It was the first sun we'd had in weeks and it was beautiful!
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barbe you made me smile. you are right although whenever my daughter sends me a pic of my grandson on my phone I find a moment of joy.
you are right on. many times I look outside and see the birds at the bird feeder and might heart smiles
if you could forget yourself I guess.
any more job interviews?
thanks
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Determined - be strong, we are here for you.
Sunday before Thanksgiving in our sunday school class, a question was ask what are you thankful for. I stood and thanked the class for supporting me through my journey last year, thankful for my DH, he has been my rock, and DS for know when to hug and asking "how are you doing today". I decided that BC would not be my curse but my blessing as I have change my out look on life, build better relationships, be a mentor to other women with BC. We cannot let this defeat us, we are strong when we stand strong together.
I saw my MO yesterday after two months gave him update on how I was doing, SE from Femara etc. Told him of my lack of sleep and stressing about my recon issues. He gave me persc. for anti-depresant. Never been on one hope this helps me sleep as I can only seem to get few hours of sleep.
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mjbmiller, I'm glad you reached out. Do remember that the meds can take 3-6 weeks to hit the level your body may need. Also, tweaking may be needed. What did he put you on? (I've probably been on it.) I'm very happy for you to be getting some well-deserved help.
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mjbmiller I know you are right. everyday I list in my head during my prayers what my blessings are. My DH has been awesome. I have lost friends but those that stuck by have been wonderful. I keep thinking as I am sure maybe you do that when we are finally finally done with all the surgeries it will be better. Just did not expect the many layers I guess to all of it. My surgeon made it seem so simple........"If you want bigger boobs have a mastectomy" Man I wish I could sit her down and professionaly and politely tell her how her attitude harms her patients.
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I think its a great step that they can do recon- its a step above when the only treatment for bc was a mx and prosthetics- and I read a story somewhere where women from other countries don't even have prosthetics available to them. But reconstructed breasts are just to feel normal in clothes. I think the disconnect we all feel is because our friends and family just see the outside- we look normal in clothes. so we should feel okay on the inside too right? WRONG. we don't feel okay. it's not the same as a real breast and that loss is something we have to allow ourselves to grieve. maybe the only ones that are aware of the loss is our significant others and even with them it can be hard to talk about.
I bring it up sometimes- I just say- I miss my breast... and he's like I know you do. I'm sorry. What else can he say? I was dx 6 months after getting married. The bc brought us closer together, he's been my rock and I don't feel self consious around him.He helped me strip my drains, change bandages, take care of me during chemo. We had both hoped the nipple recon would be more like the other one in feeling from his point of view- bc I had radiation the skin didn't hold the bump well and its pretty flat. I had a juvaderm injection to plump it up but that doesn't last either. it kinda feels pointless. I still have another round or two of tattooing to do- but then I'm done- it seems like it never ends.
I've been back on Wellbutrin for a couple months now and I am feeling pretty good mentally. I'm going to give the tamoxifen another try. I didn't have bad SE's maybe just some mojo issues- but I was also on just Pristiq then, my ovaries were in the process of coming back online after chemo. Now I feel like I can do a better assessment of whether it is causing issues or not. I stopped taking the Tamox for about 10 months.
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