Great saying about depression
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I so totally agree with everything. I don't understand why there is not more out there about how to deal with the loss of your breasts! It is huge and like Alyad says it is to look "normal" in clothes! Well great but then what? Yes I agree it is amazing that they can do all the things they can do but it still isn't the same and never will be. I so wish I had been able to keep my nipples then at least I'd look like I remembered looking. The fake areolas and nipples are just horrible - well the nipples arn't even noticable.... The doctors seem so thrilled and say how grateful we should be.... why? Yes it is great they can do this and they make a lot of money doing it but if it was their wife would they finally actually get it or their daughters? Makes me really wonder. I had the opportunity to go to a PS who was a woman who had BC and reconstruction. I looked her up and she was so totally perfect I thought nope - can't do it. I later found our a friend of mine had gone to a luncheon and she was totally full of herself her abilities but mainly how beautiful she was. So glad I didn't go.
I get awfully depressed and sad. We have lost so much and still so much still looms over us all. I think for the most part I pretend like it never happened and then it totally blindsides me and takes me down. I know some of the women on this site are so very young and my heart just breaks for them especially. I feel young though and get angry about that not that anyone young or old should have to have this horrible disease. Makes me wonder why there isn't something more equilivant in men. I know there is prostate cancer but something that is as cruel,disfiguring and emotionally suffocating. I still think so much of medicine is a man's world that perhaps then they might really understand how horrible we suffer even if we finally get to be classified NED. It isn't ever over and never will be.
My sisters came up for my birthday and they both commented how great my slightly fuller fake breasts looked in clothes. I was so happy for a few minuted then their comments made me want to just go dive into bed and lose myself. They cannot begin to understand - that is one of the hardest and most cruel things that I at least get how men might not get it all as they don't get a lot anyway, but other women really can't begin to know how so horrible it is.
Wow, sorry not sure why I went on so long - so sorry.
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Stanzie don't apologize! thats why we are here. I tend to write really long entries - I have a lot to say!0
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Determined- (((HUGS!!!)))
barbe- Your description of the fox sounded absolutely beautiful. The closest we have is the occasional coyote or bobcat in our front yard!
mjbmiller- Like barbe said, don't get discouraged if you don't feel relief right away on the anti-depressants. It does take awhile and the first one they try may not be the right fit. Stick with it. It really does help.
Stanzie- I think NO ONE gets it unless they've lived it. Unless they had breasts, and now they don't, they will never understand all the things that change for us. I thought by going to a female BS and PS that they would be able to empathize more but even they didn't get it. Two highly educated women, who work day in and day out with patients with breast cancer, and they acted like I was complaining about having a tooth pulled or something. You said it perfectly- it's not over and it never will be.
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Barbe - I was perscibed mirtazapine, 15 mg (generic for remeron.\)
It was only perscribed to help me sleep, and I hate reading all the SE of all these drugs. I hope it helps.
When you go through the process of talking about surgeries with your BS, you get cought up in how great the recon process how it helps get through the loss of your "normal" breasts. So not true, then when you have problems and everything goes south with infections, more surgeries, more complications and then on top off all that you have to go through treatments. Now I am half and half. Half recon/half flat. I am getting acustomed to the flat side. The recon side just no longer feels right. My PS was so understanding when we talked about not continuing on with recon. He said "you been through enough apart from the treatments". My DH still feels someone made an error and is still pretty angry about the recon process, but he said he is starting to get over it. I just want go get on with my life as it is now. Accepting of who I am and what I can accomplish, living in faith daily.
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So many pain filled posts tonight and I cannot even begin to respond except that we are all going through it together--I am so grateful for all of you amazing and incredible women!
I was very lucky in that when I found out about my BC, many of my clients were survivors. One of them was great. She sat me down and just told me: you will never be the same, no matter how great they can make you look, you are just never the same. It's life changing and they don't have any supports for all of these hundreds of thousand of women experiencing this! I am very grateful that I have had a relatively easy reconstruction process but at the end of the day, we have lost a a very intimate part of our bodies and I don't now why there doesn't seem to be any counseling available after the whirlwind of dr's appointments and surgeries are over. My dr. asked me today, what do I find joy in? And I told him, I remember the things that used to get me excited, but I no longer know what those things are. I no longer know who I am. My body no longer works, my life has been completely dismantled and I have no plan in place, no goal, except to feel better.
Hugs to all of you!
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I've been gone for a few days. Wow, what a rollercoaster on this thread lately. Looks like things have "moderated." I'm glad. But oh, how sad some of the posts are. I'm hoping we can all find a happier place for a few days. Sometimes it just seems impossible to find a break.
Wishing you all a much kinder day.
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I, fortrunately, went through my bc journey in complete shock. I put one foot in front of the other and did what I had to do. Unfortunately, I suffered from depression long before bc. Bc did not improve my depression. Now two years later I am trying to come to terms with the loss of my breasts. I second guess myself all the time. I KNOW I made the right decisions but I so wish I had some other options.
MJBMiller ... my ps was very upfront - he told me I would look "normal" in clothes but intimacy would never be the same. As I said its been two years and my chest is completely numb. My expanders failed completely and I have not done anything about it. I am debating implants vs removing excess skin and staying flat.
As Maya2 said - wishing you all a much kinder day.
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Miller (easier than mjbmiller), I was on Remeron once and it was so good I said that I fell asleep as I was reaching up to turn out the light! Hope you had a good night's sleep.....
Welcome Kathleen....
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Rats! I also wanted to say to miller, nice to see the real you!!!! You look real....
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Just realized we have a MBJ and a mjb(miller)!
mjb- I love your new photo!
MBJ- I think your client should get some kind of award for being the first person to "tell it like it is" to someone ahead of time. For a lot of us it would have just been nice to have been prepared for all this rather than have it sugar-coated. I might not have done anything differently but I think I would have been better prepared emotionally.
Reading all the pain and angst on this thread it is obvious that this is a huge aspect of cancer treatment that doesn't seem to be addressed at all. The question is what can we do about it? It just seems like there must be some way to get the word out to the surgeons and hospitals that something needs to be different. I feel in a way that they have abandoned us half way during treatment. Yes, they "cured" our cancer but our emotions, sense of self, physicality, spirit and even mojo are left lying gasping on the operating table. Where is the "emotional intensive care" we all seem to need to make us whole again? (If that is even possible.)
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Barbe - I took it at 9:00 and was in bed by 9:30 and yes I did get a good nights sleep. The effects still were lingering until mid morning.
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Kate - You are so right. Nobody informed us about the aftermath of treatment. The doctord and surgeons are there for the cancer not the follow-up mental care.
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I agree that we're left hanging on our own with the emotional fallout of this disease and that that in itself is nearly as bad as the cancer and treatments. For me right now - in addition to sudden, unexpected bursts of anger and feeling like I walk around with a black cloud of fear over my head all the time - I have a hard time with the PTSD I get at medical appointments.
For instance, yesterday I had my first-ever bone scan and chest x-ray. Comparatively speaking these are no big deal - not really painful, over fairly quickly - but I wigged out and had a hard time keeping it together.
There I am, in a room with three rad techs about my age who are doing my chest x-ray. They're all behind the little glass wall and I'm hugging the x-ray screen and holding my breath for the picture - and trying not to cry because I can't believe I'm having to hug an x-ray machine and am terrified of what that film is going to show.
Luckily I had my back to them and was able to control my emotions. By the time I was allowed to let go of the machine and they came into the area, I was better, but eager to get out of there and run down the hospital hallway.
From the way they dealt with me - questions they asked about why I was there - it was clear they aren't that used to dealing with patients their own age let alone ones that cry during a painless procedure, so I knew I couldn't get emotional.
Then during the bone scan the young guy running the machine asked me questions about different parts of my body, so now I keep thinking I have cancer in those places.
Like all of us, I'm in that worry phase until I see my onc on Jan. 31st to get the results. I have a stress headache already from this. I can't live like this - I'm wondering if anyone has had relief from talking to a therapist?
Maybe there are therapists that specialize in helping cancer patients? I'd give this a try if its worth it. Anyone ever done it?
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There is relief from talking to a therapist. Ask the case manager at the hospital for a referral for one who has some knowledge of BC. Most of the support I have gotten is through the wonderful women here.
Sending you a geat big (((((HUG)))))!
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Michelle67 - Hugs to you too.
I agree with veggy, check with your hospital. Most do have groups but maybe you can find a little one on one. I am lucky as I have a great pastor at my church who is the head of a cancer care group I have started going to. I know if I cannot discuss something in the group, I can talk to him or one of the other pastor's involved in our care ministry. Overall it is important to have someone to talk to that understands.
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Kate: I know, I noticed the MJB & the MBJ awhile ago!
Michelle: I had my breakdown in the MRI room. It was the first time it really hit me and I was terrified--total meltdown. Luckily I had brought my friend who had some Xanax and I was able to mae it through that horrible hour. I think they are seeing more and more women who are young with this disease and I would be surprised if many of them didn't break down and cry. Hoping you have a manageable cancer and that they will be able to start your treatments soon so that you can get some relief! This is the hardest time--the beginning of this roller coaster ride. Hugs.
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You know ladies, with all the talk about reconstruction or not...I want to share a thought with you. My hero and the person I thought about a lot this last year is my Grandmother. She lost both of her breasts back in the 70's, before anyone had much of a choice on recon and when they really did a job on the chest wall too. I was too young to empathize much, just knew that she had cancer and used "fake bras". I remember that she wasn't shy about them, just accepted them with humor, making up names for them. I have been blessed with a beautiful reconstruction (looks good, feels numb), and as I said, I have no idea what she really thought or felt. But the thing is, when I think of my Grandmother I don't think about if she had breasts or not. I just remember what a loving, strong beautiful woman she was. When I start to get down about BC in general I try to remember this and know that my kids, husband, and dear friends really don't care if I have real, fake or missing parts, they love ME. Its not a cure-all, and I am not saying we don't all have the right to be mad and sad, just that our sisterhood is full of other strong, beautiful women who have survived to lead a full life after BC. I like to believe that we will get there too.
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I had a breakdown before my MRI- before that I just threw myself into research, I'm not sure if I even cried after diagnosis. I only had DH with me at the biopsy cause they said I should have someone. i was going to go to to the MRi by myself. I'd mentioned MRI in emails and Gmail pops up ads on the side based on what's in your email- it popped up things about lawsuits with the contrast hurting people- so I had it in my head the contrast was going to kill me or something and was totally freaking that morning. DH saw I was freaking and asked if I wanted him to go with me- I had such a hard time admitting I was freaking out about a test- I felt like I should be able to be strong and suck up the fear. I'm so glad he just said- I'm going with you when I couldn't answer when he asked if I wanted him to go.
I had a couple other ,meltdowns- going in to get the MRI results, knowing the surgeon was going to say the nipple had to go, and the day before surgery when I had the SNB tracer shot and it was the most god awful mind searing pain- I'd been holding it together pretty well for someone who was having a masectomy the next day until that point. I went to my PCP and demanded xanex for that night, but somehow went back to work for a few hours after that.
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Our journey is not over when the stitches heal, when we take our last pill, when our hair grows in.In exchange for that, we live a life that others cannot fathom, a life that takes each moment in reflection, in gratitude, in anger, and because of that, we LIVE. We live like people who realize that despite our protests, we only have each other in this moment, and that is enough.
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We live in fear. Bottom line. If anyone thinks the worst was hearing "you have cancer" the first time, I bet it's worse the second time. Tests and test results seem to be the way of life for us, YUCK
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Maybe we need to come up with a new diagnosis? We'll call it PMSD- Post mastectomy stress disorder. Seems to describe what we're all experiencing. The funny thing is if we were mugged, and the mugger slashed up our breasts, we would of course be expected to be traumatized and stressed. But because it was done under anesthesia by surgeons we're just supposed to be ok afterwards? Makes no sense to me.
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AND, the kicker is that we allowed it!!!
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We may have allowed it ,but it isn't like we really had a good choice not to!
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I don't know if anyone answered your question, but yes there are therapists who specialize or who have knowledge of cancer patients/survivors.....I asked my cancer center and they gave me the name of a few people....my psychologist recommended the psychiatrist....but not all therapists who deal with survivors are experts in ptsd....
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I went out with some friends last night and they asked me, "So are you feeling back to normal now?" They seemed so surprised when I said no and expressed actual disbelief when I said I never would. (Do you think people ask amputees if they feel back to normal 6 months after they've had a limb removed and an artificial one put in its place?) I told them I knew I'd get to a point where I didn't think about it 24/7 but that my body would never again feel like it was supposed to.
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Kate, your analogy about an amputee is very appropriate! Did you think of that last night and ask them??????
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I think so many women really are ignorant about BC until they are diagnosed or just plain insensitive! I have always known what a devastating disease this was, but I never new about all of the layers of having to cope and the continued feelings of loss that accompany it!
Kate: Hugs!!!
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barbe- I didn't! Too bad, huh? Oh well, at least I have it ready for the next time! LOL!
I think a lot of people think this is all about how we look afterwards- like it's a vanity thing. I tried to explain to them that it is about how I FEEL. Like you said, MBJ, it is the layers upon layers of different emotions and losses. You just never imagine how many different areas of your life will be impacted from a few tiny cells.
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Okay, here's something. I remember when I was pregnant with my first. So it was over 30 years ago (holy crap!!!!). One of the fattest women in the office said to me "We're watching to make sure you lose all that weight you know!". Holy cow sister! Have you looked in the mirror?????
Why do people judge us on how we look? We are all carrying a cross of some sort. I love the story where Jesus let's us pick out a different cross, but when we go to the pile of choices, we find our own cross is the smallest......
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Kate, my aunt's brother recently had to have his leg amputeed. She has been at a loss and still grieving for her husband and was dreading going to see her brother and now knowing what all to do or say. I did tell her it was like what I went through at the time I talked to her it was before it happend and I did tell her that going through something so horrific your brain does kind of shut down so you can get through everything and that he just needed her support and love and for her to listen. So interesting you came up with that. I guess anykind of removable of body parts one will feel a lot of similar things even though every part certains has its own specialities and reasons to moarn the loss. Hope this makes sense.
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