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Recovery, people don't want to hear it

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

I've been fighting cancer since my diagnosis in May 2011. I had a bilateral mastectomy and hope it's all gone. I'm in the final phases of the reconstruction, between the 2 lumpectomies and 4 other reconstruction surgeries, I cannot keep up with my old crowd. When trying to explain why I can't meet them in town 'for a drink', they still don't understand I am sore and tired, just from these surgeries. (most recent was 11/14/12) Should I just forget about them? They are 'too busy to listen' to a voice mail, and rarely pick up my calls.
I spoke to someone from my cancer support group. She went on and on how it is such a shame that society imposes the need to have breasts.... I told her that it was my decision, that I needed something to help cover up all that they took away with the mastectomies. (I was only an A cup to begin with) I'm surprised a fellow pink sister would be so dry, when I was mentioning that I was still in pain doing all these surgeries.
At least it is almost over, I just need to get the final layers of the tattoos (Please send any advice if you have), but all of this insane hospital visits are over. For some reason, it seems that many people see reconstruction as elective, while I see it as part of my cancer treatment.
Yes, I respect everyone can choose their best treatment. For me, at age 41, Dr was taking the left, so I gave up the right one. No regrets. Still shaken up, and I think with most people around me that its best I shut up. Shallow as it may be, maybe that is what I need to do to get on with things.

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

Hi, in my personal experience people rally together at first but they
Can not comprehend the impact a diagnosis makes on our lives. They
Want to hear we beat it and live is good. I have always been a strong
believer in what I call rehabilitation after cancer. Very few can just go
back to live their lives as they did before. I am not one of them. I struggled
To get my grip on life back again. All the medical issues caused be chemo
Certainly did not help. And I just ended up removing my implants recently.
I developed an auto immune illness and have to be on medication
for the rest of my life. I will do anything in my power to regain my
Health.
But anyway my point is this a long and wearisome road to recovery
And you will find that very few people in your life have the understanding
And stamina to be by your side. You may find it hurtful at times but
That is how they are built. So try to focus on you and your recovery
And do what gives you peace of mind . In my experience that is one
Of the most important things cancer takes from us. And we all deal
With it differently. Just keep pressing on till you get to a place where
You feel comfortable with your new self.

Hug,
Ayse

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

Not responding to the thread topic..so sorry to be rude here ladies but Ayse I am curious about your having implants removed.. if I am being too forward please forgive.. I had my expanders in but never made to exchange surgery, I developed an infection and had to have them removed. Time will be up next week to decide if I want to go back through the process. I am struggling with my decision because it was an emotional surgery for me as well as physical and only someone who has had this happen knows what I mean by that. So please PM me if your experience is too private to share publicly but I would like to know what happened with you, if you know why and how often this happens to others. Did you have infection at anytime during the process?
Thanks.
Sandy

CypressCynthia's picture
CypressCynthia
Posts: 3928
Joined: Oct 2009

My first thought, after reading your first paragraph, is that maybe it is time to search out new friends. Having to meet someone in town for drinks has never been my cup of tea though.

The remark from the woman at the support group was thoughtless. Maybe she is defensive about her own decision? I had reconstruction and I have never, ever regretted it. I firmly believe it helped my personal recovery. Now, if someone chooses not to have reconstruction, I have absolutely no issue with that. The fact that she didn't respect your decision means, my opinion, that she has her own issues.

I remember being so excited about my new breast that I showed it to some of my fellow (female) nurses at work. One of them wryly commented that they were glad I didn't have vaginal reconstruction...lol, because I was so open to showing (of course, in a private location).

Seriously, most of my female coworkers and friends have been very curious about the results and I have always been open about it because, unfortunately, someone else might find themselves in my shoes.

Also, years later, I had to have a second mastectomy (long story) and had reconstruction again :-).

You sound tired and your support group sounds like it was a bust? Don't give up now--you are almost done!!! Also, don't forget what I preach about cancer and depression. It is much more common in cancer survivors, so, if you get too down, please let your oncologist know as he/she will know what you can take. Big (((hugs))) and, BTW, I love your user name (hope4thebest). :-)

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Cc,

When I attend a local support group, one lady asked if we were interested in seeing what a reconstructed breast looked like and we all said, "yes". I am grateful to her as I was curious and it helped to see what it looked liked. We all had lots of questions which she provided first hand information.

When I finally ended my year in hell, I first had minor surgery turned into a staph infection, then bc. I had 6 surgeries in 4 months, and the infection. After my port removal, I didn't want to ever see the inside of an OR again. Along with the fact that the real breast would periodically need uplifting, I never regretted my decision.

I do believe that people are curious in seeing what a reconstruction breast looks like and you provided this to your co-worker is really a credit to you.

Doris

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Hi there!

Reconstruction is an elective that some women want and some do not. There isn't a right or wrong answer to having reconstruction, it is a personal one that each woman has to make.

A lot of the women I knew who had breast cancer did have reconstruction and all seem to be very happy with their decision. One lady did have an infection and after it heal, had to start all lover again. I admired her perseverance.

Over the years I have learned that people are wonderful the first time around and as the years go by, they are less and less interested in your breast cancer. I have had 3 recurrences, 4 bouts of arm cellulitis (hospitalized) and other medical issues. To people who are interested, I will answer their questions, to the others, when they ask "how are you?", the reply is always "fine" even when anyone looking at me would think I was anything but fine. Even with my own family, that is what I say. No one wants to hear a long dialogue on breast cancer. Many of your friends probably think of breast cancer as their worst nightmare.

You have changed even if you don't think you have. Try to find people who are more like you now with the same interest. Once you are done with reconstruction, breast cancer becomes a 3 months visit to your oncologist, life will pick up again. You will feel better and this episode will become less and less prominent in your daily life, things will look differently. Give yourself time to heal and then go on with the rest of your life.

There will always be the little problem with a new pain "is it back" for 70% of people with breast cancer it never does return. The new pain will be something with a minor explanation. You need to remind yourself of that fact. Then keep on living, enjoying life.

Best to you as you enter your last phase with reconstruction, the tattoo.

Doris

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

It is great to get your feedback, I am really at a loss with things at times. I love the answer, "I'm fine" and will continue to go that route. Yes, my support group is a huge drive and very far away. Sometimes I feel out of place because I am 15 yrs younger that everyone else. I appreciate them all very much, but wonder if I should try something different, non-cancer related. I will continue to go forward.
I love you pink sisters!! Thank you for always being here.

RozHopkins
Posts: 450
Joined: Dec 2010

I know some people I don't say much too as they just get that blank look or even make me feel like I'm complaining. Which I hope I don't do as actually did well through the whole procedure but I am getting very irritated with general health issues. Other people are good listeners and caring so if need to I will open up to them and them to me with their problems. Two neighbors husbands came up to me in the street whilst gardening to wish me well after they heard of my diagnosis. That was the sweetest thing.......... Unusual for for males, I will never forget them. Complete strangers would wish me well after understanding what the chemo hats were for. My son thought it was catching......... My daughter said she supposed she will get it now (I don't have the cancer gene) so she has the same chance as any one. Though neither of them ask how I am ever, nor their dad after a minor heart attack, I know they care a lot, it's just their way of dealing with it.

However, I would prefer to be in the company of compassionate, caring people who have more life experience and are not selfish

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

I finished treatments 2 years ago (today!). My diagnoses (breast and endometrial cancers at the same time) had a profound effect on me emotionally. It became my focus and I make no apologies. I was retired and devoted the time to taking care of me. I read everything I could get my hands on, participated in this group, AND promised myself I would give back when treatments were over. I now volunteer as a peer navigator for newly diagnosed cancer patients and it is probably one of the most rewarding things I've done in my life. Bottom line - cancer changed me and with the exception of having it, the change IMHO has been positive.

Two women WERE my closest friends when all this started, and while they were with me every step of the way, I was never allowed to share my fears. I could share how I was physically, but not the emotional stuff. They simply wanted me to do what I had to do and put it behind me. They don't understand nor want to hear anything about my volunteer work, and never want to hear about any worries I have, let alone about a follow-up appointment. In fact, one of them has been bold enough to proclaim she wouldn't have follow-ups because "they got it all".

So recently we were playing bridge together. I was at a differnt table and someone asked me how I convinced my husband to do a remodel. I jokingly said "oh, I played the cancer card". From another table across the room, my "friend" yelled (yes, yelled) at me "Hey! A couple of us here went through that with you and we don't want to hear about it anymore!".

And this is why we have each other on this group. I was slow to learn that some people just can't deal with our illness and I had a lot of hurt feelings over their reactions. It will always be very disappointing to me, but I've learned (mostly from this group), that ---- happens like this.

We'll get you through the last phase of your reconstruction and listen to your concerns because we understand.
Suzanne

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

I just wanted to say how much this post is helping me too, so glad Hope4thebest started this...I have struggled tremendously with connecting,re-connecting with family and friends..The support was even almost overwhelming at first- then slowly started to diminish..It truly made me feel like a complete failure. I felt like I was emotionally weak because I can't get back to my "normal self"..I was even told by a very close family member that I probably caused the cancer myself due to not handling stress very well and not eating appropriatly. Then after I was done with the surgeries,16 chemos and rads, I should be back to working full time within 2-4 weeks! I've been called lazy, acting like a victim, everythings always about me, etc........I'm very blessed my husband has been remarkable thru all this, he's my best friend..
It does get better!!! Finding this support group was the changer for me. Antidepressants have also helped..I also think God will put the right people into my life that will be best for me(thats already happened with this group!)Just reading all the posts from cypress,ayse,sirod,Roz,suzanne on this thread have helped a lot!
We are all in this together and we are here for you,
Hugs, Joyce

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Dear Joyce,

That close family member needs to educate herself about breast cancer before making statements of that kind. Let's hope she never has to learn the hard way by being diagnose with breast cancer.

Best,

Doris

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Hi, sweet Miss Hawaii! None of it is fun or easy, but people are so different and handle things that way. Since I could be your mom, my friends are the let's go to coffee or lunch bunch! I do see that I've pulled away from them without trying because my life came to a sudden halt for a year. They continued doing things together and eventually called me now and then. I think it's out of sight,out of mind. I can re-enter anytime but when I've tried, I feel like the only one there with leprosy or something! They still speak to me like I'm dying in the next month or two. I leave feeling worse than when I arrived. To make it a doubly hard year, my Mother just passed away in Oct. Now I truly face the holidays solo. To Cypress Cynthia: I thought of you, as I stepped off the plane for my Mom's service bc your area is my childhood home. Love to all of us in the same boat. Linda

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

have said to some of you--it breaks my heart. As many of you know, I was re-diagnosed to Stage 4 status earlier this year. There are a few darlings in my life who know exactly what the score is--because they've taken the time and care enough to learn about it and be involved in my life. While they can't really know exactly how I am mentally and emotionally, they try to understand, and constantly ask me questions about what's going on with treatment and how I'm doing. The others--well, I'm afraid they're tired of the whole thing (ha--they should know how tired WE are of dealing with it!).

Just because I look pretty healthy on the outside, people find it hard to relate to what is reality for me.

Anyway, I gravitate toward the darlings and keep my distance from the others. None of us needs added stress to what we're already dealing with. Unfortunately, you can't make people be anything other than what they already are. But, I, for one, am tired of making excuses for insensitive, selfish people so if they catch me on a bad day, say something stupid, they're going to get a bit of a sarcastic remark back--that's just how it is.

I wish the people who need to be "schooled" in this were reading this forum.

Hugs and love to you all, Renee

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I think it takes a lot of 'reading' the person asking, and maybe knowing them well also. I have some friends that when they ask how I'm doing the answer is something like 'fine' or 'pretty good'. Other friends really want to know, and I will tell them most of the truth. So I am selective about what I say to whom. I guess it comes down to "know your audience".

I have several friends that I see once every 3 to 6 months to catch up, even if I have to drag myself out to meet them. I often feel better emotionally after these meetings, they usually lift my spirits and take me out of 'cancerworld' for a little while. And we schedule them in advance, that allows me to manage my energy (aka take a nap) before going to meet them.

Also, I know I will get the support I need here. I can come here to vent, ask questions, share my sorrows and my joyful times. I have never taken advantage of a face to face support group...I've gotten all the support I need right here.

Finally, I take celexa. I hit a period (I was working full time and doing chemo, I exhausted myself) when I was truly depressed. The celexa helps immensely, it allows me to have control of my mood and emotions.

You are right, after BC to have breasts or not is entirely your decision. I think you shouldn't worry about her comments...it sounds like she was on a well used soap box. And that is her opinion, hopefully you can just set that aside and not let it effect you too much. Good luck with those final tats.

Hugs,

Linda

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I see it like this. I only had a lumpectomy and for that I am greatful. That choice changes for some of us given time. However, cancer has threatened our lives. So whatever choice we make is our own business. Reconstruction is not a luxury it is a necessity until doing so threatens your health. No one would think of running around without thier front tooth in this society so focussed on looks. So why is it even a question for someone whose life became threatened by a deadly diagnosis if she wants to make herself look like she never had a diagnosis. It is hard enough to keep a job in this society without another strike against us.

disneyfan2008
Posts: 5285
Joined: Oct 2010

sorry your friends don't UNDERSTAND...

I HOPE you can make a decision you care comfortable with ...YOU must do what is best FOR you....and only you..

Denise

camul's picture
camul
Posts: 2017
Joined: Dec 2010

but only a few really want to hear how I am doing. I learned which ones really do. I think others get scared.

I found a really good support group, men and women, all cancers, some are stage iv and relate to issues and fears. It is easier to talk to them about some issues as they are not facing loosing me like my family and friends. There is an egg or two in the group every once in a while, but overall, they are great.

One friend thinks I need to 'buck up' if I am not feeling well enough to do something. I have been told I am 'mentally stronger than that', when I said I had a panic attack. It came on in a crowd and I panicked when I realized I couldn't physically get out if something happened. I have let go of some old friends... a loss, but probably overdue anyways, and let in new ones.

This disease changes your way of looking at what was once ordinary things, it also opened my eyes to a lot of beauty that I may not have seen without being here.

Carol

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