Feeling along yet surrounded by people

StacyA

Sorry my typing is horrible. I mean feeling alone.  

I'm not sure if anyone else feels this way. I've had freinds stop over all week but yet I feel alone. My mom has been over for over a week sense my lumpectomy but yet I feel alone. I just don't feel like I can really share how I feel, like i'm just supposed to be ok becasue it was caught early. I feel like people don't want to hear if I talk about how I feel. I'm scared, I want to talk, and I feel alone like no one in my life wants to listen to me. They just want me to be ok! I know they all love me and I love them and I know everyone wishes me well but its not the same as really listening. It would be nice for someone to ask how you are who really wanted to listen to the answer. 

Just had to vent not sure if anyone else feels the same way.  

Shrek4

Sweetheart, why do you think this forum has so many members? Because we all go through this. Nobody, I repeat, nobody who hasn't gotten through this can understand. Cancer is a lonely experience, and nobody, not even your loved ones, arent' able to understand what you are going through. Breast cancer is even more, because is strikes to the core of who you are, it robs you of your femininity. And it's hard to gather yourself and recover and be able to go through life dealing with a new "normal".

Even people who really love us cannot understand. How can you explain the nights when you can't sleep because of the anxiety of waiting on a new test, because you had a small pain in the x spot, or just because you looked in the mirror and a stranger looked back at you? How can you explain that when you enjoy a sunny, beautiful day, in the back of your mind will always be "will I be still here next year?". No matter how early it is caught, the beast takes over our lives. And you can never get rid of the encroaching it does on your mind.

You got on this community. Believe me, here is the only place where everybody will understand you. We are several tens of thousands members - some at the beginning of this dreadful journey, some trying to manage the hardships of the treatment, some already finished it. We all, will be, are or were there. 

Just hang in there. Sometimes, the dark blanket that seems to cover everything and dull the colors of the sunny day, sometimes, it rips, and you can live again a full, joyful life for a little bit. And then it rips more, and more and more. And you're able to put a foot in front of the other, and keep going. 

Hugs

Day

Shrek4

Sweetheart, why do you think this forum has so many members? Because we all go through this. Nobody, I repeat, nobody who hasn't gotten through this can understand. Cancer is a lonely experience, and nobody, not even your loved ones, arent' able to understand what you are going through. Breast cancer is even more, because is strikes to the core of who you are, it robs you of your femininity. And it's hard to gather yourself and recover and be able to go through life dealing with a new "normal".

Even people who really love us cannot understand. How can you explain the nights when you can't sleep because of the anxiety of waiting on a new test, because you had a small pain in the x spot, or just because you looked in the mirror and a stranger looked back at you? How can you explain that when you enjoy a sunny, beautiful day, in the back of your mind will always be "will I be still here next year?". No matter how early it is caught, the beast takes over our lives. And you can never get rid of the encroaching it does on your mind.

You got on this community. Believe me, here is the only place where everybody will understand you. We are several tens of thousands members - some at the beginning of this dreadful journey, some trying to manage the hardships of the treatment, some already finished it. We all, will be, are or were there. 

Just hang in there. Sometimes, the dark blanket that seems to cover everything and dull the colors of the sunny day, sometimes, it rips, and you can live again a full, joyful life for a little bit. And then it rips more, and more and more. And you're able to put a foot in front of the other, and keep going. 

Hugs

Day

Bren-2007

Hi Stacy ... I get it.  I know exactly what you're talking about.

My lumpectomy was a big event for my family .. because it was surgery.  Although the only one with me was DH, and he had to leave (he's a truck driver) after one day of recovery.  I was Stage I too.  All they knew were that stats .. and that "I was healed."

What no one understood was the 8 weeks of radiation that followed.  For most in my family it was the same as driving to the dentist and getting a tooth xrayed everyday.  One day my DH was home while I was doing rads and I brought him with me to show him the rad machine, table, etc., and explain exactly what was happening.  It freaked him out.

Between regular rads and boosts, I traveled from the east coast to San Diego to see my son graduate from college.  I was exhausted, skin was fried and it was a quick weekend of travel.  I remember at the ceremony, I was so tired and hot (outside in the sun) that I decided to eat a protein bar I found in my bag.  I forgot my brother asked me to hold it for him.  He was royally pissed at me.  Go figure.

Then at the graduation party, I could barely hold my head up, I was drinking pots of coffee to manage.  At that point, I remember talking to my mom's best friend.  Her sister was my age and had Stage IV brain mets.  She looked at me and told me to go lay down.  She got it ... she understood.  That was the first personal interaction I had had with someone who got it. 

That made all the difference in the world to me.  Another human understood. 

Day's right .. that's why there are so many members here ... and gals supporting one another ... because we know exactly how you feel.

Sending you hugs and love,

Bren

StacyA

Thanks to both of you! It does help. 

Bren that's exactly how I feel, now that surgery is over like I'm all fine. I'm starting to get more freaked as I have to have my port in next week and then chemo starts the following week. I guess it's the unknown of the chemo that scares me the most right now. But it is interesting how many people just don't get it.  

I appreciate your responses they really do help me!! I will try to relax today and not be so sad. 

Thanks again, Stacy  

sharonraew

 My surgery was June 7th.  Stage 1 grade 2.  Still sore.  Pathology report not back so I am waiting.  Seems there is a lot of waiting.

 Yup it sucks.  I stopped working and went on EI on my doctors orders.  My co-workers made a collection the first week and sent a wonderful gift of food for which I am truly grateful. They promised to write regular and visit.  Since then not a word.  I e-mail almost daily and no response.

 I look after my Mom although she lives in a residence and had to turn her care over to someone else short term.  One week after the surgery she started demanding this, that and the other and was not pleased when I said no.  She wants me to take her out and push her wheelchair - she's 200 lbs!

 My husband is retired and when I work he does much of the housework.  Now that I am home he leaves EVERYTHING  to me.  He cannot understand that vacuuming hurts, grass cutting hurts, changing the sheets was agony.

Everyone seems to think that since it is day surgery here that it is no big deal. No one asks how I feel - they are afraid I might tell them. I have a 5 1/2 inch incision in my breast and a 3 inch incision in my armpit. It hurts really deep inside and the stitches pull.  I can't get comfortable to sleep. It's a big deal to me!!!

 I was upset that the pathology report was not ready and so I have no idea what the next step will be.  The hospital said 2 more weeks.  All people could say was "at least you have 2 more weeks to relax". Hello - this is not a vacation!!!!

 Anyway, enough bitching.  You are right - you are alone except that you have this wonderful family of people going through it with you.  I don't post much but I read all day.  There is so much useful information, fun stuff and love here.  Make it part of your day.  It is true - only those of us experiencing this can really understand.  And we love you - Big Hug. 

DebinATL

Stacey - it is okay to feel sad, embrace that feeling, acknowledge it and tell yourself it is okay, you will be okay and your family will be okay.  When I went thru my lumpectomy and chemo and radiation, it was the hardest on my family - actually in retrospect it was "harder" on them than on me.  I know how you feel tho.  You want to talk to them about how you feel, how cancer has affected you and your life, but it is hard for your family (I feel) to acknowledge that you even have cancer.  I didn't have this wonderful website when I went thru all of this TWELVE and ONE-HAL YEARS AGO!!!!!!!  Wow, that felt great to type!!  Since I could not really talk to my family the way I wanted to and I did not have this website to vent or have support, I went every Wednesday to a Breast Cancer Support Group and continued for about a year.  All kinds of women.  What I had learned at my support group was that there was women there a whole lot worse off than me and that my trauma is not worse than theirs.......  I hope this helps you in some small way.  Sending love and light your way!  Deb

niteowl

Having gone through breast cancer twice, I've also found it's a lonely journey. Unless those around you have gone through it themselves, it's often difficult for them to totally understand. I think a support group might be really helpful, for there would be others who know and understand exactly how you feel. I went through this 21 years ago and was really depressed when it returned in the other breast.

I first feared going through chemo again and spending the next half of the year struggling with that. Then I discovered I would not need chemo or radiation, but might have to have hormone therapy. I'm nearly 65 and could not imagine having to face the next five years or so on some med that would make me feel not so well, when I want to be active, travel, learn new things... I've not mentioned my fears about this to anyone, so I play the pros and cons over and over in my head. Yes, it can be a very lonely place to be, but a support group could help, and of course a discussion board like this one, and getting out and doing fun and interesting things.

Eileen101

Day, thanks for your response. Well said and very comforting.

Stacy, yes, we all feel that way. I start chemo tomorrow and I'm absolutely traumatized! My hubby had the nerve to say that I feed my anxiety by going on this discussion board and reading what others go through. Thank God I have a son and daughter who are so compassionate. I don't know what I'd do without them, but they don't live nearby.

Here's what's really weird, though. Even when people are compassionate and supportive, and plenty of people in my life are (and I'm grateful!), they start talking about the trivialities of their lives and it makes me feel like I'm living in the Twilight Zone. I can't relate to the stupid everyday things of life. I'm trying to combat a serious illness and prepare for poison being injected into my body. Life is extraordinary right now, so the ordinary things feel foreign. What's worse, they used to be my life, and knowing that makes me feel like a freak.

Whoever wrote that bit of anonymous prose, supposedly from an ill person, that says when you visit, don't just ask me about my illness, but tell me about you ... I want to hear about your day, blah blah blah. Guess what? I don't. I don't mean to be rude to people, but I can't deal with the normalcy of their lives because I miss what used to be mine.

Hmmm ... I guess I needed to vent too.

leaf

You have absolutely every right to have different needs and preferences than the 'anonymous prose' person.  You have every right to not listen to the trivial events in someone else's life when you are fighting for your life.  Maybe that's good for someone else, but its not right for you.  We all need to go through tough places in our lives in our own, individual way.

mrsb45

Having also gone through BC twice in the last 2 years with numerous BX, surgery's radiation chemo and now Arimidex it is so comforting to know that we all go through these same feelings... I am 6-mos out now from chemo, working full time and everyone but my DH thinks life for us should go on as before. Cancer is still the first and last thing I think of every day and many times during the day..I am so fearful of another recurrance.. I tell people that unless they have walked in our shoes they really can't understand all our fears and feelings. I tried 2 different support groups but neither was a fit for me. I love to read the posts on these boards and then know that the feelings I have are normal. I also have a tough time for example: my parents giving every detail about their colonoscopy's (who are both in their 80's) like it was major surgery.. I feel like saying do you even have a clue what I've just been through... Obvioulsy they don't.. Most people really don't want to hear it. I guess it makes them uncomfortable.  Well thanks for being their to listen 

ellalovesgmaclaire

I'm the members granddaughter, I set up this account for my grandmother to try and help her though this. What Day wrote made me cry and gave me more insight to what she is going through. I love my grandma more then anyone. Shes my best friend and I want to help her as much as I can. This really helped me understand all the things she is thinking when she sits and looks down at the floor looking like shes about to cry. I feel like all I can do is hold her. She doesn't like to talk about it. Im going to show her her profile and help her use this and I pray that it will give her some strength.

Thank you everyone.

BarbaraA

Ella, have Grandma Claire join us. Only one who has walked this road can know. I am two weeks out from radiation and my work has me on the road again this week and next week. Fortunately, they are one night trips. So I am back to the new 'normal'. The new normal consists of: get in to BOS, check into hotel, did some emails, went to dinner, in bed by 8:30 (yes, 8:30 - sleep is critical in the healing process). I was blessed to work through my two surgeries with just three days off. Then I worked full time during rads. I worked mostly from home. Work really saved my sanity. Otherwise I would have been obsessing about having cancer. These boards keep me from going off the deep end into despair, which I could easily do.

All of the women on the boards have been there and done that and will help and assist your Grandma Claire with anything she may need advice about. These wonderful, strong women helped me and continue to help me as I struggle along the journey to my 'new normal'.

bonniewe

I'm glad I found this topic on the forum as I am feeling the same way.   I call it the "cancer terrors" that wash over me when I least expect them.    I find myself amazed when a friend posts that she is so overwhelmed with boxes from her and her husband's move from Dallas to Denver.   You've got to be kidding me!!!    Also amazed when I got a scathing email from my youngest sister about not keeping her informed about my progress (my surgery was June 9 2010) and my husband since his hip replacement on July 12, 2010 (my husband had kidney cancer diagnosis April 2005 and pancreatic cancer diagnosed Dec 20, 2007).   Even my family has no idea what I am going through.  I'm so tired of hearing from my friends "you are the strongest person I know and a tower of strength for everyone around you so you will be fine".      I don't want to feel sad, alone, afraid, helpless, listless, worthless, but I do.   My family doctor gave me Lexapro, but it makes me so nauseous I cannot take it.   

I had my tatoos a week ago and thought I would start radiation last Friday.   Instead, was told that they saw "something" on the CAT scan and would need to re-do it tomorrow.    I might get to start radiation Thursday.   I've been in a tail spin since last Friday.

I used to have a great sense of humor and a very sharp wit, I hope I find it again.     Think I will go to the humor section of the forum and see what I can find.

you all are amazing and I am blessed to have found you.   

leaf

Hang in there Bonnie! We're here. You have a right to feel whatever you are feeling!  You don't have to pretend to be strong with us.  We all need to get through our challenges in our own time and our own way.  We can all feel sad, mad, afraid, alone, helpless, worthless, etc. And poo-ey to those who say we 'just gotta feel positive', or strong, or whatever. 

I'd rather be (or try to be) genuinely me than falsely something else.

Shrek4

Ella, believe me, that is all your grandma needs: for you to hold her and be there in silence supporting her with your love. There is no need for more.

bonniewe

Leaf, I love the quote from Winston Churchill.   It is so fitting to what we all are going through!     you seem to be the veteran on this forum/topic since you joined in 2005, so you have been through all of this for sometime.   Very interested in hearing about your coping techniques if you can share them.   However, I know that each one of us must go through this journey at our own pace and with our own acknowledged feelings and beliefs.   It is helpful, however, to hear how others managed.   thank you for being here still!

leaf

I certainly do not have coping down for myself, let alone anyone else!

I only have classic LCIS and nothing worse, which most oncologists do not classify as cancer.  However, I do have another, unusual, but potentially more serious medical condition, with a lot of uncertainty and anxiety involved. (I have early stage disease, but there is no known cause or treatment of the disease. ) A few months after my LCIS diagnosis, I was diagnosed with a PTSD-like syndrome, so I have been seeing a family therapist for several years. (I also had early childhood trauma.)   

So I have pretty big anxiety issues. I had a new medical diagnosis every 3-6 months from 2006 to 2008. Luckily that seems to have died down.

Therapy helps some people and not others. I took some biofeedback lessons (from a cognitive psychologist).  That helps with sleep.  But I have lifetime habits to un-do, and lots more to learn.

I find this support group, in general, MUCH tolerant, intelligent, and helpful than another support group.  There 'you just have to have a positive attitude'.  There I was criticized for quoting Pubmed abstracts (abstracts direct from medical journals)!  I don't find that helpful. Here, many people will support a variety of views (well, as with the general public, you may want to broach political or religious topics carefully.)

Your feelings, needs and journey will differ from mine.  But we learn from our similarities and differences.

chabba

My husband has been wonderfully supportive and helpful since the beginning as he has been with every health issue in our 44 years of marriage. He has been with me for every appointment since my diagnosis.  I start my treatment Aug.9, 29 rads, 7 boosts and 5 yrs aromatase inhibitors.  His reaction yesterday when I told him that as my start date approaches I am becoming more and more apprehensive and depressed surprised and disapointed me.  He couldn't understand why I was so concerned since my prognosis is "so good".  He dosen't understand the concern about possible side effects or the terror of any possibility of reoccurance.  I am blessed by his support and help and I thank God for the understanding we all find in these groups.

biking8fishing9

Bonniewe wrote:  "you are the strongest person I know and a tower of strength for everyone around you so you will be fine".      I don't want to feel sad, alone, afraid, helpless, listless, worthless, but I do. 

I understand this feeling well.  I had a bilateral mastectomy and then 4 months later had a bilateral salpingoophorectomy.  I did AC and T and did not take radiation.  Concurrent with the chemo I was taking Paxil for hot flashes and accompanying side effects of surgical menopause.  I stopped the Paxil in February and things were fine (I think) until I got a call in June to reschedule a three month post chemo checkup.  I thought the appointment was being rescheduled because of bad results on some blood tests. I had to wait four days until I could talk to someone in the office.  I was a total nervous wreck and felt like I had been transported back to the intial cancer diagnosis (could not eat, sleep).  When I did get to talk to someone I did request that next time a better message should be left.  I told several people about the incident and some could understand why I was upset and others could not. 

Having two biopsies, three surgeries, CT, PET CT scans (for multiple cysts), chemo did not make me feel as bad as I feel now.  I was strong and am now weak,nervous, back on the Paxil.  People tell me that I am strong and I want to tell them that I am not strong.  I am not really sure of where to turn or get help.