If I knew then what I know now...
There is nothing anyone can do. I have been abandoned. I am invisible.
I hope all of you know how lucky you are when you mother-in-law comes over to clean your house, or your friends take you out to help you feel better. How many Saturday nights do you sit by yourself? I am alone and lonely.
You go through treatment and with radiation, you see them every day for 33 days in a row except weekends. Then you are done. Out there on your own. No support. Nothing and no one except endless aloneness. Where do I turn to now? Who really cares? All there is to think about is that God is in control. I am going through this...why?
Comments
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If you want a mastectomy
If you want a mastectomy just to be un-invisible than that isn't a good reason to get one. The best reason is it could have had the same result. I mean for support. We have had threads before where woman with mastectomy felt just as invisible.
I'm sure you will get lots of others responding. It will be ok. You could try calling the ACS number and ask if they have any phone support and you can always post here. We been there too.0 -
your new friend is here!
Hi Betsy,
I am a DCIS survivor too.
Sweet girl you are not alone.
You are so right about "you have to look sick" to be considered sick.
That black rain cloud follows me around contantly.
Turn to everyone here. That's where things started to turn around for me.
My blog on this site offers some humor if you'd like a good laugh.
Please keep in touch. This is the place to be for where you are now.
Sending you hugs and thoughts.
xxoo,
SamuraiMom0 -
you are not alone...
Some of us are more fortunate than others to have friends or family members who are there with us after operations or treatment, but even those who don't aren't totally alone. Don't sit in the house by yourself. Even though you feel exhausted (and don't believe you wouldn't if you'd had the masectomy - you would - we all do! It's been a year for me, and I still don't have the energy I used to have.) get out and start slow. Start going to the park, or the mall and walk a little each day. Say hi to the people you see. If you have any religious beliefs, get to services once a week, or call a contact at the venue of your choice and see if they have an outreach program. Instead of drinking coffee at home, go to Starbucks, or even McDonalds, and talk to someone else who's sitting alone. Don't be afraid to introduce yourself to someone. They might be just as eager for conversation as you are. If they aren't, you aren't out anything, but if they are, you have gained something, and perhaps so have they. And as you get healthier, and stronger, check with your local social services office. If they don't have a support group, maybe you should start one yourself in the area. I'll bet you're not the only lady going through this, and wishing for someone to talk to!0 -
I think you are saying iffilimu said:you are not alone...
Some of us are more fortunate than others to have friends or family members who are there with us after operations or treatment, but even those who don't aren't totally alone. Don't sit in the house by yourself. Even though you feel exhausted (and don't believe you wouldn't if you'd had the masectomy - you would - we all do! It's been a year for me, and I still don't have the energy I used to have.) get out and start slow. Start going to the park, or the mall and walk a little each day. Say hi to the people you see. If you have any religious beliefs, get to services once a week, or call a contact at the venue of your choice and see if they have an outreach program. Instead of drinking coffee at home, go to Starbucks, or even McDonalds, and talk to someone else who's sitting alone. Don't be afraid to introduce yourself to someone. They might be just as eager for conversation as you are. If they aren't, you aren't out anything, but if they are, you have gained something, and perhaps so have they. And as you get healthier, and stronger, check with your local social services office. If they don't have a support group, maybe you should start one yourself in the area. I'll bet you're not the only lady going through this, and wishing for someone to talk to!
I think you are saying if you had the mastectomy you would not have needed radiation, and wouldnt have the radiation after effects? One of the hardest times is when you are in this limbo, you look good but you dont feel good. people want to you to move forward and you are dealing with the fatique. I get sad when I dont feel well. it hits home that I had CANCER. I have been doing much better and you will find yourself getting more energy. This weekend I had some issues with nausea and dizziness. and it brought it all back. then it triggered a sad attack.when I feel good which is more and more, then my mood is better. so hang in there you will be better soon. then you will feel like doing things again.0 -
You can always chat or connect with someone here
Please don't feel alone. It's funny because although someone may have friends and a good support system, they can still feel "alone". I felt like that. It's that "separation" from normal people. You can be in a room full of people all laughing and talking but in the inside, you're by yourself.
I felt like that even after a few months after my treatment. Then little by little, I started trying to find a "new" normalcy. That includes dealing with pain and ramifications of treatments. But I needed to start creating that new normal for myself.
Do reach out. Find a support group in your city that you can attend events and small groups. Join a Church group, I know there are many out there.
You have a lot to live for and a lot to give. I don't know where you're from but I live in San Antonio, Texas and if you live there or close to it, give me a call (210)383-3901.
Praying for you,
Sylvia0 -
Sorry you are feeling alone
but you really are not. I do have the support that I need but sometimes even that doesn't help. I finished my rads on 7/2 and have been exhausted a lot of the time. I finally went to my med. onc. who drew some blood and sent me to see my regular dr. The med. onc. said I should be feeling ok since it has been a month since the rads were done. But my reg. dr. says I am still having the effects. I will be off work for 10 days and then start again slowly. My dr. said I did too much too soon. She also started me on Lexapro but I am not happy about that.
Give yourself the time you need to get back your energy. We are all different and each of us needs our own time to get back to "normal".
Just remember as long as you have this site you will always have someone to talk too.
Hugs0 -
So sad
I sorry that you have no support system. That really sucks. Just a note. I had a mast and had rads too. I don't know what to say to make it all go away, but we are here for you. maybe we could have a private chat. I moved out of state and was diagnosised a year later. All family and friends 1000miles away. I have a husband, but it scares him to death. Talk about it seldom. I had stage3c with 18/20 positive. Yes, when you're finished you're just kind of out there. What's next? I'll put you on the friend list. God is in control. I just turned it all over to Him. Something will happen in a positive way for you. Positive energy and hugs coming your way. Katz0 -
Betsyladyg said:Sorry you are feeling alone
but you really are not. I do have the support that I need but sometimes even that doesn't help. I finished my rads on 7/2 and have been exhausted a lot of the time. I finally went to my med. onc. who drew some blood and sent me to see my regular dr. The med. onc. said I should be feeling ok since it has been a month since the rads were done. But my reg. dr. says I am still having the effects. I will be off work for 10 days and then start again slowly. My dr. said I did too much too soon. She also started me on Lexapro but I am not happy about that.
Give yourself the time you need to get back your energy. We are all different and each of us needs our own time to get back to "normal".
Just remember as long as you have this site you will always have someone to talk too.
Hugs
If you didn't have radiation you may not be dealing with those side effects, but you would be dealing with other side effects. None of us no matter what treatments we received are exempt from some sort of side effects. Having a mastectomy is no walk in the park.
Please come here to talk, we are here.0 -
Side effects
Betsy,
Having a mastectomy can come with its own set of side effects: lymphodema, range of motion problems, pain, chest tightness, skin problems, along with emotional and mental issues.
I understand what you mean about ending radiation and being "done" with no other treatment. It seems like there should be more to do after radiation. I think the fact that the treatments are every day (except weekends) makes it more of a shock when it is all done.
I encourage you to find a local support group so you can talk to people who have been through some of the same things. Even if they have different stages of bc than you they will be able to understand you better than your old "friends". Contact your ACS office to find support groups in your area.
Who really cares? We do and we will be here for you for as long as you need.
Take care and keep us posted on how you are doing.
Wolfi0 -
carkris said it allcarkris said:I think you are saying if
I think you are saying if you had the mastectomy you would not have needed radiation, and wouldnt have the radiation after effects? One of the hardest times is when you are in this limbo, you look good but you dont feel good. people want to you to move forward and you are dealing with the fatique. I get sad when I dont feel well. it hits home that I had CANCER. I have been doing much better and you will find yourself getting more energy. This weekend I had some issues with nausea and dizziness. and it brought it all back. then it triggered a sad attack.when I feel good which is more and more, then my mood is better. so hang in there you will be better soon. then you will feel like doing things again.
I feel so much like what you describe. If you don't look sick, you should move on and be okay.
I feel like when I do try to explain it to someone, that they look at me like, okay time to get over it. A mastectomy isn't going to change any of these feelings, it really is this limbo part that is the hardest.
Buy I do have good days and on the days that I'm dizzy and have nausea, I too get sad.
Best of luck to all of us.0 -
Ahhhhhhhhh-the secrets they keep!!Wolfi said:Side effects
Betsy,
Having a mastectomy can come with its own set of side effects: lymphodema, range of motion problems, pain, chest tightness, skin problems, along with emotional and mental issues.
I understand what you mean about ending radiation and being "done" with no other treatment. It seems like there should be more to do after radiation. I think the fact that the treatments are every day (except weekends) makes it more of a shock when it is all done.
I encourage you to find a local support group so you can talk to people who have been through some of the same things. Even if they have different stages of bc than you they will be able to understand you better than your old "friends". Contact your ACS office to find support groups in your area.
Who really cares? We do and we will be here for you for as long as you need.
Take care and keep us posted on how you are doing.
Wolfi
"They" don't tell us the aftermath, do the? "Surgery's over...radiations's done...you're fine!!" So they say. Yeah, right...let "them" do this!! I had a mastectomy, and it took a year to really get over all that goes with this lovely disease. The emotional...the physical...the soul. I keep saying this....ALL NEED TO HEAL. You just finished in May. That's not enough time, dear lady. Your body is healing, your mind is reeling, and the soul is trying to cope. However, it does eventually come together. In TIME.
I echo what everyone has said...it just sucks you're alone. But you're not because we're here!! And we aren't going to say to get up because it's done. It isn't. The effects of the anesthetics is another thing that pulls you down. Are you on an AI? That pulls you down too. So, you need to start a little at a time, and do some walking. Do the block, then increase it. Go outside and enjoy the weather.....sit in a park...or on the beach if you're close. Get yourself out of that house. That's not helping. Slowly start moving. Find something that amuses you.....reading, working in your yard....something to take your mind off "you" for a while. It does happen.
Your friends don't know what to say right now. You've scared them. They could be next!!! Oh, my...the horror. And, then what? You will find as you heal that things are different all around. You will change and "the lady that once was" is going to be "the lady much stronger." In time. And, your friends will be taken a-back again. In a good way!
Hang in there Betsy. It will get better. I promise.
survives0 -
Hey Betsysurvives said:Ahhhhhhhhh-the secrets they keep!!
"They" don't tell us the aftermath, do the? "Surgery's over...radiations's done...you're fine!!" So they say. Yeah, right...let "them" do this!! I had a mastectomy, and it took a year to really get over all that goes with this lovely disease. The emotional...the physical...the soul. I keep saying this....ALL NEED TO HEAL. You just finished in May. That's not enough time, dear lady. Your body is healing, your mind is reeling, and the soul is trying to cope. However, it does eventually come together. In TIME.
I echo what everyone has said...it just sucks you're alone. But you're not because we're here!! And we aren't going to say to get up because it's done. It isn't. The effects of the anesthetics is another thing that pulls you down. Are you on an AI? That pulls you down too. So, you need to start a little at a time, and do some walking. Do the block, then increase it. Go outside and enjoy the weather.....sit in a park...or on the beach if you're close. Get yourself out of that house. That's not helping. Slowly start moving. Find something that amuses you.....reading, working in your yard....something to take your mind off "you" for a while. It does happen.
Your friends don't know what to say right now. You've scared them. They could be next!!! Oh, my...the horror. And, then what? You will find as you heal that things are different all around. You will change and "the lady that once was" is going to be "the lady much stronger." In time. And, your friends will be taken a-back again. In a good way!
Hang in there Betsy. It will get better. I promise.
survives
I've really come
Hey Betsy
I've really come to recognize my aloneness during this journey too. I have dear friends who will come to town to help and a daughter who lives 8 hours away, but no one close by to
go to on a daily basis. We all need that close someone to lean on. I'm going to go see a therapist today. At least I can unburden my mind to her with all the things I need to get out. There are no support groups in my area , but if you have a wellness center with classes and support groups you should go. The radiation fatigue will get better.0 -
We are here, we are here, we are heeeeeeeere!!!!
Dear Betsy, I hear you, loud and clear! We all do, truly. Pleases know, even with a mastectomy, I needed chemo and radiation . Day after day it seemed to drag on. Hey- we are here friend! All of us ladies know somewhere in the back of our minds that the other shoe may drop. But, actually, EVERY one should know that. It's big-for sure. You and I and all the other awesome ladies here have A LOT of information about our bodies. When first diagnosed I read every piece of info I could get my hands on-both vetted and non-vetted stuff. OCD took over. It took many sleepless nights to come to the realization- THIS IS MY LIFE RIGHT NOW!!!! I AM NOT GOING TO LET CANCER OR THE FEAR OF IT STEAL ANY MORE SECONDS THAN IT ALREADY HAS!!!!! It's hard. Let it out. Let it all out as much as you need to. We are here for you. We understand. Then...We all need to laugh and love 'til it hurts-that's what counts! Please hang in there. Call a professional, a friend....make them listen too. Keep us posted! xoxo, Jackie0 -
I think this can bejackiejhm said:We are here, we are here, we are heeeeeeeere!!!!
Dear Betsy, I hear you, loud and clear! We all do, truly. Pleases know, even with a mastectomy, I needed chemo and radiation . Day after day it seemed to drag on. Hey- we are here friend! All of us ladies know somewhere in the back of our minds that the other shoe may drop. But, actually, EVERY one should know that. It's big-for sure. You and I and all the other awesome ladies here have A LOT of information about our bodies. When first diagnosed I read every piece of info I could get my hands on-both vetted and non-vetted stuff. OCD took over. It took many sleepless nights to come to the realization- THIS IS MY LIFE RIGHT NOW!!!! I AM NOT GOING TO LET CANCER OR THE FEAR OF IT STEAL ANY MORE SECONDS THAN IT ALREADY HAS!!!!! It's hard. Let it out. Let it all out as much as you need to. We are here for you. We understand. Then...We all need to laugh and love 'til it hurts-that's what counts! Please hang in there. Call a professional, a friend....make them listen too. Keep us posted! xoxo, Jackie
I think this can be formidable both the mental and physical, so whatever you need do it. I find exersize helps too. I feel I have become pretty high maintance. all the things I have to do to keep myself on track. but they are good positive things. things I should have been doing all along.
Friends and family are great but they dont always get it. you stay in standstill mode long after they have moved on. I am dealing with that now. I had to deal with all the physical stuff and am just now adjusting the mental, fatigue, stress, emotions,chemo brain all put you in a fog making things harder to process too.
In the book "After Breast Cancer" by Hester Hill Schnipper a two time breast cancer patient and oncology social worker it states it takes as long as your treatment to recover afterwards. you have to be patient with your body. hugs0 -
I have felt alone at times
too Betsy. But in truth we really aren't. I have a couple of sisters, mom and daughter who can visit while I'm getting chemo but they all work so getting rides to places is another challenge. I had bilateral mastectomy June 22 and start chemo tomorrow. Even though I had no lymph node involvement I might still needs rads after chemo. My chest is still recovering and is very tight. I had a Purple Power Port placed in my chest for chemo. I have to do exercises for my arms. I still don't know what side effects are in store for me. So, we all go through this. I have found immense support on this network with bc sisters :-0 Keep posting and let us know how you're doing.
Sending cyber {{hugs}}, Char0 -
Hang in
I have family and friends that live nearby, but I too feel alone most of the time. I took myself to most of my Chemo treatments and all of my radiation treatments. Everyone would ask how I was doing, but they really didn't want to hear about the side effects or worries I had. They just wanted me to say that I was Ok. Last week I started going to a support group. I felt weird about it at first, but they understood EVERYTHING. They had been thru it all and had felt the things I had felt and had the same worries as me. It was wonderful and freeing to be able to relax and talk about it to people who actually listened and cared. Please check to see if there is a support group in your area. It really does help.0 -
The advice Punkindo
told you about is good. I may eventually go to a support group. For now I have all of you and 2 sisters who are bc survivors. It helps to talk to someone who already knows what you're going through. I have a booklet from NCI that says not to tell people you're ok when you're not. Tell the truth. You have bc! I had multiple surgeries 3-4 years ago and I became so depressed after having a bone infection and had to quit working because I couldn't drive for 18 months. I isolated myself and became very depressed. I sought out a therapist, someone not connected to me who would listen. Believe me when I say it helps :-0 Sending you cyber {{hugs}}, Char0 -
Hi Betsycahjah75 said:The advice Punkindo
told you about is good. I may eventually go to a support group. For now I have all of you and 2 sisters who are bc survivors. It helps to talk to someone who already knows what you're going through. I have a booklet from NCI that says not to tell people you're ok when you're not. Tell the truth. You have bc! I had multiple surgeries 3-4 years ago and I became so depressed after having a bone infection and had to quit working because I couldn't drive for 18 months. I isolated myself and became very depressed. I sought out a therapist, someone not connected to me who would listen. Believe me when I say it helps :-0 Sending you cyber {{hugs}}, Char
Hi Betsy. I am so sad to hear that you feel so alone. Whatever support we have, I think all of us feel this in some way. I hope you will feel that this is a place you can come and talk to people who understand. I'll be thinking of you.0 -
Betsy
If only we knew the answer to your question, I am going through this...why?,
we could possibly find a cure. The body is so complex. They don't say doctors
are "practicing" not have mastered medicine for nothing.
I know exactly how you feel, I found myself in a bad spot. With having recently
moved here and my family being abroad. I have been relying on myself very
heavily and pushing myself like crazy. There were those days that all I wanted
was a hug. And somehow I felt I must not be very lovable to be alone in this
worst of situations.
This experience taught me to be more gentle to myself and more forgiving.
I know for SURE, there won't be a full time job and full time school, plus a part
time on the side. I am DONE with stress.
And I am actively interviewing for REALLY good friends and holding the few
that came through for me close.
Don't feel invisible. Don't forget there's only one of you. How amazing is that
thought alone. Your DNA is unique. Can you even start fathoming that?
I also found, right now it helps me when I can help someone else in need.
Can't explain why it just does. I am rescuing cats. Just today I found a home
for one. Got two more to go. Find something, anything...... but don't let your
mind reel and wander off from what really matters "YOUR WELL BEING".
This has become my mantra and I forgot which genius told me this, but
here it goes:
YOU ARE WOUNDED NOT BROKEN
Lots of BIG, BIG hugs!
Ayse0 -
Yes, it is true, if you
Yes, it is true, if you don't look sick people act like you must be fine. Funny, I had a bilateral mastectomy with immediate reconstruction just three weeks ago. I have days when I feel like I have a flu. I feel achy and my stomach is upset and I'm just tired. My daughter says my body has been traumatized and it is trying to get over it. I agree. But, my one sister looks at me with my little first fill boobs and says "I thought you said you got a mastectomy?" I guess I look fine. I took that as a compliment and a sign of hope. Hey, you gotta grab signs of hope and consolation where you can!
The day I had surgery, a lot of family was there. I was out of it and didn't care. Now that I'm starting to feel better, they don't even call. That's o.k. I know their numbers and I know where they live.. He he he he0
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