Angry and isolated. Friends Rah Rahing me. Hate it

No, it is not worth it. Unless you have been through it, you can't get it. I, myself, wonder how many times I said stupid things to people I knew who had cancer (or have other serious medical issues) before it happened to me. That is why support groups, in person and/or online are so good, you can talk to other people who really do 'get it'. Some thing that helped me cop with people was: if an acquaintance or co-worker asked me how I was doing, I would say, "I am hanging in there," and then I would quickly change the subject and ask them about their dog or kid in football or whatever....people like to talk about themselves and it took the focus off me (I didn't have to try to explain things and they couldn't make unhelpful comments either). I would force myself to go out and do as many normal things as possible and also kept exercising as much as I could, as, for me, sitting around and thinking about cancer all the time was not good for me mentally. One positive thing it has done for me is it has made me more aware of how important it is to send a card, bring over food, help out how I can when I hear that someone I know is struggling with a health problem (and also not to ask how they are doing unless I really, sincerely am willing to sit down and listen to the answer. Tough way to learn that lesson!

Well, for starters your mental health is great!!!  Everything you said has happened to  every one of us  and I do love the "pray for you" instead of mowing the lawn - and I LOVE the think positive and courageous stuff - like you, most of us are scared - instead of pink ribbons the public need education about the "real" cancer treatments and their long term se's - there's nothing pretty and pink about this disease - coming here to vent was the right thing to do.  Sending hugs, S.

I am going to slap the next person who tells me " I look great"  " you wouldn't even know you have cancer". Usually I get this when I tell them how tired and exhausted I am. I've had 47 straight weeks of weekly taxol with no end in sight. It feels like they don't believe things are that bad. That I'm moaning for no reason. 

Librarian B--I hear you and you're definitely not alone.  I think there is such a divide between people who have breast cancer and those that don't.  I certainly know I've learned a lot since being diagnosed and am amazed at how naive I used to be. 

Several years before I was diagnosed, my mother-in-law had a local recurrence of her breast cancer and since I was living close by, I was involved in taking her to appointments and tried to read up on what she was going through but it wasn't until I also had breast cancer that I really started to understand it.  After her treatments were over (a mastectomy with no lymph node involvement) I couldn't figure out why she was so afraid of it coming back because from what I understood, she was cured.

I've come to the conclusion that the vast majority of people mean well but are clueless on how to be helpful.  Since it took me being diagnosed and spending a LOT of time researching what was going on, I think it's mostly pointless to educate all but the people closest to me about what it's really like.  And what it's really like is scary which most people don't want to know.

Have you ever read Cancer Made Me a Shallower Person: A Memoir in Comics by Miriam Engelberg?  I thought it was very funny and insightful.  Humor is the main thing that gets me through this whole mess!

BCO is a great place to come and feel sane again.  Hope it makes you feel less alone and isolated.

And thanks for that grammar joke.  I'm off to pass it on to my cousin, the English teacher.

Librarian-B  Yep been where your at too except my relatives say " just think of all those women younger than you " It still sucks no matter what age. I got tired of the  pity looks too. Really they are scared they will get it too. I only got my updated mammo because a coworker had BC. I no longer speak to one of my sis because she lectured me about thinking positive and how I was upsetting my family. Yikes- I only pray neither sis has to go thru this. BC does come back it is just a case of when. Trying to stick my head in the sand works good for  me..ha.. The MO seem to omit this when they give  you the  stats. Hugs to all of you BC sisters. These forums and support groups is where the real understanding begins. There will be ups and there will be downs just take it a day-week- month at a time.

Since we are venting, the saying that I hated most of all is, "God doesn't give you more than you can handle." ARGH!!!! After one too many of these, I finally snarled, "No, not until he gives you the thing that KILLS YOU!" GRRRR!

But I must say that I liked the people who said stupid things a lot more than the ones who didn't say anything at all!

I was 31 years old when I was first diagnosed and yes I took tamoxifen for five years and had a recurrence 2 years after I finished. 7.5 years after the original so maybe tamoxifen delayed things. I had a full mastectomy next as my surgeon and I agreed my breast could no longer be trusted. I then had 2 years of ovarian suppression and I took tamoxifen for a further 3 years then stopped because I hated it. Then a brand new cancer the other side a year later. Although the tumour is highly ER positive my Oncologist is worried that the cancer maybe resistant to hormone therapy coming along so quickly after years of tamoxifen so I'm basically being treated as a triple negative. At least for the mean time.  

Not sure if I'm any help in your decision making. I guess at this stage of the game with all the treatment I've had, all the yearly mammograms and ultrasounds and I've still ended up in the stage 4 club I feel if it's going to happen it's going to happen. I do feel though that tamoxifen pays some part in the 15 mostly good years I've had since 1999

Hallelujah to this topic and string of posts!!! If one more person tells me "how good" I look I'm going to punch them in the mouth. What am I supposed to look like right now? As if the Grim Reaper is waiting patiently on my front porch??? Ugh. I'm still taking care of myself, keeping up on my daily hygiene and wearing make-up, especially while I still have my eyelashes and eyebrows. My hair is gone, but I wear some hip, fun bandannas and scarves. I guess I just look too good to have breast cancer. Yay me!

I actually told my friends NOT to buy me anything pink, with breast cancer ribbons or anything else that publicly alludes to my newly granted membership in this club. Know what the color pink makes me think about? Love. Romance. Happiness. Precious newborn baby girls. I don't think there's anything romantic, happy or warm and fuzzy feeling about breast cancer. Who the heck came up with that color anyway? I'd like to punch them in the mouth.

So far, most of this journey has sucked. But, until you're here, you don't understand that. You just don't get it. And I certainly don't want anyone else to be in a position to "get it." 

So for now, I smile and tell people "thank you" when they tell me I look good. I need to grant them grace in the "what to say to someone who has cancer when you don't really know what to say" socially awkward, small-talk department. Honestly, with an eye on self-reflection, I may have been one of these people prior to my diagnosis. You mean well, but again, you just don't get it. I wonder if anyone wanted to punch me in the mouth?

I love the "cancer is a gift" spiel too. Um, NO. I didn't ask for this for my birthday, anniversary or Christmas. I'd actually like to return this "gift", but alas, there are no returns allowed. Cancer is the gift that really and truly keeps on giving. It gives stress, nausea, anxiety, fatigue, sadness, loss of body hair, some body parts, strain on your libido, loss of some "friendships", etc,. How many non breast cancer patients would like to find all that, and more, under their tree on Christmas morning? Nope, didn't think so. So, please, please, please do not call my breast cancer a "gift". Or, I may give you my gift of a punch in your mouth. 

I have a friend whose response to every setback in life---no matter a biggie or smallie---is "stay positive, focus on the good, it could be worse, you are doing great, stay strong, keep moving forward, this will be over soon". Blah, blah, blah....is all I hear anymore when we talk or text. Even when I told her how bad my second chemo/Nuelasta shot reactions were, her response was still some of the above. I feel like she's not really hearing and understanding me. I can't take the "all is wonderful", happy-crappy stuff from her anymore. So, guess what? I've begun limiting my personal and electronic conversations with her. It's been hard but necessary for my sanity.

I will share with everyone a comment made to a friend of mine who recently underwent a double mastectomy. I swear to God this is true. Prior to her surgery, a "good friend" (note the quotation marks) called her, and before even saying hello, asked "So, how long have you wanted to be a boy?". When my stunned friend responded "what?", her friend merely repeated the question. Swear.To.God. Now that "friend" definitely deserved a punch in the mouth.

Ahhh, people and their so called "well meaning" comments. Even with my early stage diagnosis, (and believe me, I know how lucky I am) I hear it all the time. "Oh, no biggie, just a scare/wake-up call and now you can focus on your life again!" Oh, sure, NO BIGGIE!

Did THEY lay on a cold hard table while a machine filled with radiation whirred and clicked and popped as it fried my breast? Or, did they have someone take a scalpel and lob off 1/4 of their breast in TWO SURGERIES in three weeks? (had a re-excision for a close margin) NO? Well then go jump in a lake with your positivity and "no biggie" comments. 

I was just looking at my "past appointment" section of my chart (have access online with Yale) and saw that since January of 2013, I have had 65 APPOINTMENTS!!! This is one hour drive each way! That is NOT COUNTING the rads! Please do NOT tell me how lucky I am or that it was a scare or wake up call. I had breast cancer!! Not a fun time at the beach or something equally as inane they are equating this with.  And add to all that the PAIN I am experiencing from the Aromasin in every single joint in my body. Even my HAIR hurts on some days..or at least it seems so. But, because I was >95% ER/PR+, I take this drug anyway. I can't take tamoxifen and my MO won't prescribe other AI's for DCIS although she did say I can take femara if I absolutely insist but since I heard the same horror stories about that one, I will stick with the devil I do know if you get my drift.

OK, rant over! We do get it!!!!!!!!!!!!!!!!!!

Oh ladies....your comments to follow-up my post brought tears to my eyes and made me LOL! 

I am pretty well-endowed in the breast department and often would talk about getting a reduction, especially during long runs and after races. So, one of the first things said to me by a runner friend after my diagnosis was "hey, you might just get those new boobs after all". Oh yay, yippee!!! How exciting for me!!!  Wanting "new" smaller boobs and making a voluntary choice to have them reduced is drastically different than cutting them off because of breast cancer. Fortunately, I didn't need a mastectomy but did have a lumpectomy. I now have one semi-reduced breast. I sure as heck hope not to have the other breast reduced for the same reason.

ruthbru..... is right!!!  Omgosh those 2 people needed to turn on their filters before speaking. I was telling a friend that I've been wearing lots of cute bandannas lately and she replied, "Oh yea, Cathy did that a lot too". Yep. The same Cathy who died from breast cancer. Helllooooo people???!!!!!!

April, I loved your post. I feel that I have to shut up and put on a happy mask because "it was caught early."

WTF does that mean? I know that my situation is not the same as the women with stage IV but do I have to be happy about stage II?

Will my sisters in BC  allow me some vanity without judgement please?. My breasts were beautiful. I mean really beautiful. I know breasts are not me , I know I am more than mammary glands,  I know that life is precious beyond all things . But dam it, its only been 2 months and I mourn,  I grieve the changes .The aftermath of the surgery is hideous in my eyes. There I said it. 

Yes, I fear for my life, I hate the treatments , I hate the letrozole, I hate it. I hate how it makes me feel and I hate it that I have to be grateful because I am told thats what stands between me and death. I hate it all and I hate what it has done to my body. 

Please BC sisters who have had mastectomies and chemo and .....you know what I mean. I know your suffering is greater than mine which only adds to my guilt of feeling this way.

I am taking Femara.  OMG will it always be like this? I am sad every day. I lost my energy, I lost my sleep,i lost libido, I lost who I use to be. I feel like a washed out, used up version of what I was.

But everyday I put on a happy face for all to see.

I won't  wear a f**king pink anything. I don't want to walk in October, I won't ever ever call my scarred, dented, radiated, medicated anatomy Tatas!

I never ever say any of this to anyone. I keep it to myself. Its not pretty to complain. I am suppose to be beautifully brave but inside I am both seething and sad.

Rant over. Thank you

raidergirl,

There is no better or worse, less or more  Once we have entered this path, we are there together.

Nel

When I was first diagnosed, a very sweet, well-meaning friend suggested that I should 'journal my feelings' (which for some people is a wonderful idea....). I said that I was sure that would not be a good thing for me to do. When she asked why not, I replied, "Because the only word in my journal would be F#CK, F#CK, F#CK, F#CK......." she did not give me any more advice.....

edited to take the 'U' out of F#CK.......

Reading some of the post here reminds me of when I was first diagnosed.  The first weekend following the diagnosis, I arrange a weekend vacation for myself and my sister.  I thought I would have someone I am close with to help me with the horrible news I had the big C.  Well, while at the hotel, my sister's daughter and her 5 year old twins showed up, too.  I was so upset when I found out they were going to stay for the weekend, I refused to see them.  Besides, my mastectomy was scheduled for the next week and I did not want to catch anything from the little ones.   I spent all my time alone,while my sister entertained her daughter and grand kids. I refused to go to the room ( even though I was paying for it) when they were visiting.  Later, I complained to my sister that I wanted to just spend "sister time" with her.  She could not understand why I was so upset.   Cancer was  not such a big deal.   it didn't occur to her or her daughter my emotional state.  Later, after the ruined "sister time" my son tried to tell his cousin why she shouldn't have come with the twins--that I needed to be with  my sister.   I will never forget what my niece said,  She told my son that she did not understand why I was agitated or frightened about Cancer--that her mom (my sister) had a brain tumor (benign) removed and she wasn't afraid--so why was I afraid. That hurt and made me feel that my fear was not validated. I told my sister that she didn't lose anything--that I would lose a whole breast and have to suffer from all the SEs and worry about Cancer for many years.  However, I knew then that not everyone understands the full effect of Cancer to those who are diagnosed.  So when someone tells me I am looking good when I am feeling losy, I just smile and move on.

Heck, I would remove dozen of benign tumors any day, rather than go through this BC $h!+.  People are clueless.  Sorry you had to deal with this.