Wish I could go back

Eil4186

survivor51 said:

Totally Understand
Eil,
I totally understand where you are coming from and I finished my chemo June of 2007. I hate to say that these feelings will not go away totally ever again. It is much like a death and as time goes on, the pain, anger, guilt, fear, etc get better but then there are times it is like yesterday. I posted a few days ago and several of the "sisterhood" jumped in and helped pull me to a better place in my head. I have not done any journaling but think maybe that will help. I figured I might color code it so I can actually see the good days vs the tough days. I guess we all feel your pain in one way or another and you definitely are not alone but I find that this is the only place where people understand. I wish there was a magical answer but actually writing to us does help or at least it helped me. We are here, so rant, vent, share, be a helper and at times be the needy one. That is what the sisterhood is all about. Sending you girl power and many hugs through cyberspace. Angela

thank you
Angela, thank you so much. I like the idea of journaling---I was doing it for a while and I think I will start it up again. I hope you are doing well. I know you have been a bit down too. Hugs, Eil

Eil4186

phoenixrising said:

I don't like it either Eil.
I don't like it either Eil. I'm trying to be a phoenixrising but I'm afraid I won't make it out of the ashes sometimes. That's why I chose that name, hoping it would give me strength and optimism. I also fear death more now than I did before dx. I don't venture out into the bush (forest/nature) as much as I did as I'm afraid of running into mountain lions or grizzly. I used to camp by myself and travel wherever the spirit took me. A huge disappointment to myself. I realize that not seeing your docs as much anymore can make you feel like someone has taken the floor out from under you and you don't think you can fly. But you will fly, we all will fly and have nothing under us and I think in that flying we will gain more confidence and eventually like it and fuss at going to the docs.

I think my friends think "times up" lets move on too. They don't understand and unfortunately I don't think I would either if I were them. I call our situation "walking with death" because the axe can come down at any time. And although we could have been hit by a bus before dx, life and perspective changes when you see your name and cancer together on a piece of paper. Then you go through tx and then you deal with all the se and then you worry and worry some more. Esp our cancer. Many cancers, if you get enough years behind you you can breathe a little easier, but unfortunately we can be at risk for many many years, not just 5.

I don't know if it will help you but when I've had enough I hand it over to the Gods and say you figure it out. I take the attitude that what will be will be as I have proven that even though I thought I had control over my life I really didn't so why do I think that all this worrying is going to help anything. But then I worry some more

You're not alone Eil, this psychological maze is one many of us are dealing with. You didn't mention if you were on anti-depressants. Have you thought of taking some for a little while?
And remember the meds we are on can cause huge disturbances in our well being.

Thinking of you and sending you tons of hugs
love
jan

5 years--phooey
Jan, you are so right about our risk being longer than 5 years. Most people think that if you make it that long you have nothing to worry about. A woman in my support group just had a recurrence at 9 years out and a friend of a coworker just had a recurrence at 15 years out.

I know I have to let it go and not let it ruin my life, but its hard. Your words really helped a lot. Thank you. Eil

Eil4186

ohilly said:

I relate
Eil, I have been feeling this way, too, now that my treatment is over (I finished chemo on June 20 of '08). In many ways I am happy: I have more friends than I did in the past, am involved in a lot of hobbies and activities, and now have much less frequent doctor's appointments (I only have one plastic surgery left in April: the nipple tatooing for my breast reconstruction). However, cancer is always in the back of my mind and I, too, think about dying and how horrible it would be having to leave my children, who still depend on me. I actually AM a therapist (Licensed Clinical Social Worker) and I agree with you that I'm not sure talking to someone will help: I think it's just a reality that we have to live with the uncertainty that 'the other shoe could drop' and there's not much we can do about it. I'm sure like me, you're doing the best you can, and don't think about it every second, but it's always there. It does help a little sharing (at least for me) sharing my feelings with people on this board who feel the same way.

It's not easy, is it?

You're in my thoughts,

Ohilly

Thanks
Ohilly, I think you're right. Death is real and we can't do anything about it. A counselor can't tell us its not. What is there to say? I don't think about it every second but you are right it is there looming much of the time. I guess cancer made death real for me and now I am living in fear that I never had before when I was oblivious. Thank you so much for your support. Eil

Eil4186

EllieJV said:

Oh I am giving you a BIG
Oh I am giving you a BIG HUG! I know how you feel, and I am just starting the walk! I am scared of everything...the full diagnosis, the surgery, the follow-up treatments, the medications, the healing, the "look" from those that know, but don't REALLY know! Someone wise, told me to take every single minute, as it comes. Ground myself in "now", no NOW. Wait, NOW! You see, if you are concentrating on the "now" you can get thru it. And, you can see that we are ALWAYS going to be afraid of something. But, it isn't going to stop us from going forward, and trying to live life again, the way we want to.

You will be losing your "security blanket" when your visits with the MD are a little less frequent. But, they are still there, if you need them. They aren't going to shut the door on your butt, as you leave. They will open it right back up, if you need to be in there. But, you don't want to be there all the time. You want to "get out there and live". And, for those times when it just seems a bit overwhelming, stop by HERE and NOW and we'll help you thru it.

I'll be here for you, for whatever support you need. If you are looking for a butt kick, bend over, I'm here. If you want a pat on the back, I can do that. If you want that Hug, anytime, you'll get one. Now, get a little closer to the monitor, so I can reach...

Ellie

Ellie, its funny, I never
Ellie, its funny, I never want to call my docs because I don't want to bother them also! They are so busy and are so overworked....And I don't want them to think I'm a wacko. I find your idea about living NOW. I am going to to try thinking the word over again everytime I start to worry or obsess. You are right we have to live in the moment and try not to worry about tomorrow. Its so hard though....

Eil4186

lynn1950 said:

The winged monkey likes to sit on our chest. Make it back off!
Eil - You have given me so much encouragement. I gotta write to tell you that you have touched me with your honesty. You never have to pretend that the cancer never happened, but I know that friends don't understand. Mine keep asking me when we're going to celebrate my done with treatment party and whew, treatment may be done (October), but I sure don't feel like celebrating!

One way I get the winged monkey off my chest is by some exercises my therapist taught me. She said that I have to grieve and deal with the feelings. If I stuff them down, they'll never go away. She asks me if I can welcome the feeling, not fight it. This is very hard. It's OK to say no. But if I can welcome the feeling and be there with it in the moment, sometimes it diminishes. Then I go through the process again, until it's totally dissipated. Doesn't always work. Other times I just need to cry. I have found music that turns my spigots on (Jackson Browne, for one), and after the rain I feel some serenity. It is really hard.

It really helps to know that others share these feelings; it makes me feel less weird. When I expressed my feelings to my onc he said, if you keep feeling this way, you are letting the cancer win, even if there is not one cancer cell left in your body. He has no idea how hard it is to let go of the fear.

I hope tomorrow is a good, good, good day for you. Love, Lynn

Lynn, what a kind and sweet
Lynn, what a kind and sweet reply, thank you. I wish you a good, good day too. Eil

Eil4186

kbc4869 said:

Honestly, Eileen, at two
Honestly, Eileen, at two years, I was still reeling. At 5 years, I was able to breath a little better. I know everyone says it and it doesn't help you now, but it does take time. There are still days when I feel unnerved, but they are less and less. But when they hit, they hit hard, and I start all over again. All we can do is focus on today. We are here today. We are healthy today. Tomorrow is out of our hands.

I wish I had a way to make it better for you. Just know that you're not alone. This "new normal" thing should come with a user guide, some cliff notes or a map. It's hard to find your way with no direction.

And I know your're tired of meds, but the antidepressants have helped me. They've helped a lot. I really think in order to heal you have to get some sleep. Things look completely different after a decent night's sleep.

(((((((((Hugs, Eil)))))))))))))

You do have a way to make me
You do have a way to make me feel better---your friendship. Thank you so much, Eil

Eil4186

Marcia527 said:

Eil, everybody has said it
Eil, everybody has said it all. I can't add anymore. Just want you to know I'm in your corner.

Thanks, Marcia!

Thanks, Marcia!

Eil4186

mmontero38 said:

I'm right there with you
I'm right there with you Eileen. You've expressed my feelings to the T. Just want you to know, I'm in your corner. Hugs, Lili

Lili, I had no idea that you
Lili, I had no idea that you were feeling these things too. I hope we can eventually get past them. I wish you peace and happiness. Eil

Eil4186

mimivac said:

Your words ring true
And what more can I add that others haven't? I'm not post-treatment yet, but I certainly identify with your feelings of being unmoored and the fear of death. When we are diagnosed, the healthy innocence of "everything will be OK" is taken away from us and a veil is lifted from our eyes. Even after treatment, I don't think you can ever go back to that pre-cancer time completely. The suffering and fear we have been through preclude that. But I also think that "the new normal" can have its own joys and rewards, some of them greater than before. Even so, I'm scared too. I think maybe just let yourself feel what you will without judgement. Who says you are unstable? Is it unstable to fear the recurrence of something that was so frightening and hurt so much the first time? I think it would unstable to never think about it. If you find that you cannot find any joy in your life though or that the worry is overwhelming, then I agree that a short time on anti-depressants is worth thinking about. They might help take the edge off of the anxiety so that you can concentrate on other things and once you do, it becomes a habit. Anyway, when I told my doctor that I had overwhelming anxiety she did not think I was unstable. She understood completely and tried to help. That is what doctors are supposed to do.

I know that you will be fine. Your cancer was caught early and dealt with aggressively. There are many, many survivors who started out at more advanced stages and are doing fine years later. I know your post was more about emotional issues, but just putting this out there. I hope you are feeling better.

Mimi

Thank you Mimi, you are so
Thank you Mimi, you are so young and going through this nightmare but yet so positive and wise. You inspire me. Hugs, Eil

Eil4186

fauxma said:

Don't let it rob you
I can understand how you feel. When I first had cancer seeing the doctors and being in their care was like a blankie. It was reassuring to know that they were there and that I saw them often and they would take care of me and I would be okay. And even though I knew I could call whenever I needed to between visits I didn't because I "didn't want to bother them". And then I was going to see them less often and that blankie was being taken away. And it was scary but I realized that it meant that I was doing well and that was the goal. By the time I was up to yearly visits I still missed the blankie but I didn't really need it. And I learned to call when I had concerns between visits. And when I had a second cancer, I started the blankie process all over but it was actually easier for me. This time I am doing better right from the start not because cancer is any less scary but because I have gone through it before and I felt more prepared and I know that my blankie is there. I also learned one thing during these years, If I let this dreadful disease rob me of today because I am so worried about tomorrow, then it wins even if I stay well. I ain't giving nothing to this disease. If it wants anything then it's going to have to fight me for it. And I am one tough cookie. I will not borrow trouble. It doesn't mean I don't have bad days and yes, there comes a time when everyone else thinks, GOSH AREN'T YOU OVER THIS YET, IT'S BEEN YEARS and that's hard because you never completely get over it. That's why places like this are a godsend because these people understand. And whether it's been a week, a year or half a century as a survivor we need each other. I would echo what several others have said, If you are having these feelings, talk with your doctors about using something. Reactions to our cancers are as varied as the cancers themselves. And know that it is so "normal" to feel this way. I hope I don't sound too preachy. Use what helps and ignore the rest.
Stef

Stef, you are exactly right
Stef, you are exactly right about the blankie. Its a perfect analogy. I feel like the one thing that I have been clinging to all this time is slowly being pulled away from me. The one place where everyone I come in contact with understands what I've been through and ise taking care of me and standing guard. I wonder how it will feel when there isn't anyone to watch over me anymore? Eil

KathiM

Find distractions...
I'm trying to figure out why I am in the minority about this. I don't think I worry much about this any more. I just go on. And look for things to do that will make me happy. I never liked change, but so much of it has happened in the last 4 years, well, I guess I found normalcy in the changes.

My beau complains about the rest of the world doing so much better than he is (he has a bad heart). One example is the man that takes care of the yard in Holland. This guy is 70 years old, and can rip a tree out with no trouble at all. GREAT, right? Come to find out from his wife that he has had 2 heart attacks, and numerous bouts with atrial fib...he just shrugs it off, and goes on living.

Another gal, a 2-time breast cancer survivor, said to me "You know, Kathi, there isn't anything that scares me except the safety of my grandchildren." This was in response to my saying "Weren't you frightened about the cancer coming back?"

I feel that living my life, whatever that means, is better than the alternative. I'm not done yet. Neither is my newest patient partner (rectal cancer). She is 92 (!!!!) years young, still works, drives, and lives on her own. Her daughter says that the family tells her things to remind them of, she is still so sharp. She, too, is a double survivor...she had breast cancer 40 years ago!!!!

I know this probably hasn't helped much. I don't spend much time worrying about cancer coming more than once...I know it can, breast cancer was my second one...the first being rectal cancer that had a VERY dismal survival rate. So, there it is.

Hugs, Kathi

lynn1950

rjjj said:

Eil I'm praying
HI eIL , i AM STILL STRAINING MY EYES to see the light at the end, I know now that might not happen until I reach Heaven. Maybe the darkness will diminish a little each day.. as I reach the acceptance stage. I think i have overcome the denial stage but the Anger, bargaining, and depression seem to rotate around. Fear is the reason for the anger. Fear that comes from that f###### cancer trying to steal our lives and tormenting with our loved ones. THAT IS what keeps me angry and gear up for the biggest battle of my life.
This does not mean i do not want to live with peace love and joy in my heart, Of course i do! I am trying to stay positive and do things to make me happy, but sometimes our thoughts can be the scariest thing of all. I find I have to hurry on to something else,,sometimes even leave the house, call a friend, or just put my head on my husbands shoulder to distract myself and look the other way. I don't think this is denial but instead a way of coping.
Today is my real birthday and i have made it to 54! I plan to die in my sleep at age 90 something.. hope this is what God intends also..but whenever
it happens i know i will see the most beautiful light at the end of the tunnel i will ever see!

God bless all of you today and every day. and thanks for such caring support.
Jackie

Happy Birthday
Just wanted to say, hope you've had a terrific day! Lynn

mimivac

KathiM said:

Find distractions...
I'm trying to figure out why I am in the minority about this. I don't think I worry much about this any more. I just go on. And look for things to do that will make me happy. I never liked change, but so much of it has happened in the last 4 years, well, I guess I found normalcy in the changes.

My beau complains about the rest of the world doing so much better than he is (he has a bad heart). One example is the man that takes care of the yard in Holland. This guy is 70 years old, and can rip a tree out with no trouble at all. GREAT, right? Come to find out from his wife that he has had 2 heart attacks, and numerous bouts with atrial fib...he just shrugs it off, and goes on living.

Another gal, a 2-time breast cancer survivor, said to me "You know, Kathi, there isn't anything that scares me except the safety of my grandchildren." This was in response to my saying "Weren't you frightened about the cancer coming back?"

I feel that living my life, whatever that means, is better than the alternative. I'm not done yet. Neither is my newest patient partner (rectal cancer). She is 92 (!!!!) years young, still works, drives, and lives on her own. Her daughter says that the family tells her things to remind them of, she is still so sharp. She, too, is a double survivor...she had breast cancer 40 years ago!!!!

I know this probably hasn't helped much. I don't spend much time worrying about cancer coming more than once...I know it can, breast cancer was my second one...the first being rectal cancer that had a VERY dismal survival rate. So, there it is.

Hugs, Kathi

Your attitude
Kathi,

I love your attitude. Can you bottle it up for us? I definitely need a dose. . Even though I am still at the beginning of this journey, there are times when I value life so much more than I used to and actually feel happier than I did pre-cancer. Of course, there are the other, darker, times, too, but I really cherish the good days now. It's like, I'm so happy just to come home from work, exercise on my elliptical, eat a healthy dinner and watch the Food network with my husband and cats. I used to think all that was boring. Now, I'm so happy that I have a great job that pays the bills, a place where I can exercise at my leisure, a fridge full of food. I think of the people facing this disease who don't have these things.

For me another thing that has helped is taking on personal projects. It's a distraction, like you say Kathi, and it makes you aware that you are living life. So, I'm now really into healthy stuff. I research healthy foods, excercise, meditation, fabrics, lotions, whatever. It makes me feel that I have a hand in my own destiny, in making my life better.

I was watching this HGTV show called My Great Big Renovation or something like that and this woman had purchased four side-by-side apartments in a highrise in Chicago. She was converting them into one amazing condo of her dreams. It came out during the show that she was a two-time breast cancer survivor who had had a child after her illnesses. For some reason, she really inspired me. She was living life in such a large, joyous way, making her dreams come true. Now I know most of us cannot afford such expensive dreams, but I took it as a metaphor for building your life after cancer in the biggest, best way you know how. I think about her often. My husband and I have even started re-modeling our walk-in closet last weekend. A small version, but good enough for us .

Mimi

dorothyt

mimivac said:

Your attitude
Kathi,

I love your attitude. Can you bottle it up for us? I definitely need a dose. . Even though I am still at the beginning of this journey, there are times when I value life so much more than I used to and actually feel happier than I did pre-cancer. Of course, there are the other, darker, times, too, but I really cherish the good days now. It's like, I'm so happy just to come home from work, exercise on my elliptical, eat a healthy dinner and watch the Food network with my husband and cats. I used to think all that was boring. Now, I'm so happy that I have a great job that pays the bills, a place where I can exercise at my leisure, a fridge full of food. I think of the people facing this disease who don't have these things.

For me another thing that has helped is taking on personal projects. It's a distraction, like you say Kathi, and it makes you aware that you are living life. So, I'm now really into healthy stuff. I research healthy foods, excercise, meditation, fabrics, lotions, whatever. It makes me feel that I have a hand in my own destiny, in making my life better.

I was watching this HGTV show called My Great Big Renovation or something like that and this woman had purchased four side-by-side apartments in a highrise in Chicago. She was converting them into one amazing condo of her dreams. It came out during the show that she was a two-time breast cancer survivor who had had a child after her illnesses. For some reason, she really inspired me. She was living life in such a large, joyous way, making her dreams come true. Now I know most of us cannot afford such expensive dreams, but I took it as a metaphor for building your life after cancer in the biggest, best way you know how. I think about her often. My husband and I have even started re-modeling our walk-in closet last weekend. A small version, but good enough for us .

Mimi

Eil, I also have some of the
Eil, I also have some of the feeling that you are having. My family and friends think everything is alright now, I've gain weight(due to the Arimidex) I haven't had a good night sleep since MAY 2008, I'm depressed(try not to let it show) and this is only some of the things that is going on with me. Your Post has helped me. I thought I was losing it. I know I'm blessed because the cancer is gone. Now, how do you deal with the life after cancer? Cancer to me is like a hurricane, it comes in and tear down things, and it leaves sometimes the cleanup is long for some of us and for some it's not.

Parillab

You Are Not Alone
Eli,

You are not alone in your thoughts and feelings. I am currently going through the preparation stages of my reconstruction and actually look forward to my doctor visits. I remember when my surgeon told me that he would not be seeing me for awhile because he had done his part for now. I was so upset because I had looked forward to seeing him, his P.A. and the nurses. I just wrote in my profile that I am somtimes afraid. I have my moments when I am depressed and anxious.

My mother fell ill and passed in July of last year and shortly after I received the word of the malignancy. Then came the snowball of the diagnosis, radical mastectomy and reconstruction. There are nights where I sit in a chair and just cry because I am unsure what to do with myself. Most days I try not to think about it feeling that if I don't think about it then it's not there.

Please keep your head up and know that you are not alone.

Deborah

Eil4186

Parillab said:

You Are Not Alone
Eli,

You are not alone in your thoughts and feelings. I am currently going through the preparation stages of my reconstruction and actually look forward to my doctor visits. I remember when my surgeon told me that he would not be seeing me for awhile because he had done his part for now. I was so upset because I had looked forward to seeing him, his P.A. and the nurses. I just wrote in my profile that I am somtimes afraid. I have my moments when I am depressed and anxious.

My mother fell ill and passed in July of last year and shortly after I received the word of the malignancy. Then came the snowball of the diagnosis, radical mastectomy and reconstruction. There are nights where I sit in a chair and just cry because I am unsure what to do with myself. Most days I try not to think about it feeling that if I don't think about it then it's not there.

Please keep your head up and know that you are not alone.

Deborah

Deb, I am so sorry about
Deb, I am so sorry about your Mom. It seems like we share similar feelings. I am hanging in there with you. Things have to get better with time. We have to believe that. am there for you too.
eil