Feeling along yet surrounded by people

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

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

 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. 

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.

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.

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.

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.   

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.

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.

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.