My sister is forever changed...help!

Dear "Sister" and all..

Let me first say that I am a 7 year Survivor and the daughter to a 2X Survivor ( lost to mets when I was in treatment), niece to 4 survivors ...

My perspective is that in family's where there are so many diagnosis, one can't help but believe that Cancer is what their family "does" and that it is part of "who they are" and so they become familiar with beast as they grow up and older. Changes everything within the person and the family dynamic.

Dru, you did the best u could at the time.. And your Mom knew you loved her, don't best yourself up.. I wish I had been able to do more for my Mom but she lived 12 hours away.. I did my best.

In families where there is not a great deal of illness the affected person can feel "different" and alone even though so many step up to help during initial treatment.



But this whole experience is a journey .. Doesn't stop when active treatment is over..This is not "the flu"... The body and mind continue to be affected by the disease and treatments for many years to come. So in light of that ones "identity" and perception of "who I am" are constantly changing as well. It takes LONG time to begin to see oneself in a new light,and with a new definition of "who I have become".



It's hard... And I am STILL trying to figure out my "place" in the world and in my own family.



Be kind, be gentle and love each other the best you can. Hopefully time will soften the edges of fear and pain and we can emerge whole again.



Gentle hugs to all,

Marcia

It's part of her experience and she will never forget. It's a bit like ... I lost a child 27 years ago. I have moved on, I have two grownup kids, and so on. But of course I relate to what happened ... when I hear about someone else losing a child, or hear of a child born with the same heart malformation, of course I think about him. And I will probably relate to the breast cancer I don't (think I) have anymore, all my life, even though new things will happen.

I guess your sister's problem (if there is one) is that her life and thoughts have been so full of her cancer for a long time. She can't just cut it and restart where she was. New things need to happen and fill her up, and until they do, her focus will be the same. Of course, this is just a guess, and maybe not even a good one. But don't worry too much.

Hi sister,

 I have been on both sides of breast cancer.  I am a 6 year survivor of stage IIb breast cancer at age 41. I also watched my youngest sister go through breast cancer 1.5 years ago at age 43.

I know you understand that this is a life changing disease (I still wonder sometimes if I will live to retirement and I am 6 years out! or when the other shoe is going to drop)., its really hard redefining your "new life" after breast cancer.  There is the "before cancer" and "after cancer" and how everyone deals with the emotional part of the aftermath of this disease is so, so different.  Your sister may just need validation of her feelings,  this is hard crap to have hanging over your head every day.  We never expect this to happen and when it does, it is like a train wreck and then you wake up wondering how the heck you survived it all..."was that me that this just happened to?".

Not having the support of a partner is even more difficult.  My husband knows that breast cancer has forever changed me, I try the best that I can to live everyday and not let it overtake my life as I am still young at age 47 and have alot of living to do.  I know that being a man, he would rather fix it but he knows that is not possible so we live our lives as best as possible and he is there to support me.

I worry about my younger sister, her breast cancer was close to her chest wall and her tumour was 7cm!  I found it extremely difficult at first supporting her (it is much easier being a patient than a caregiver) despite having gone through breast cancer myself not knowing if I was saying or doing the right things.  Now that things have settled down a little, I am there for her to listen and love her.

Be gentle with your sister, she has been through alot.  Listen to her and love her like you did prior to breast cancer.

 She may be suffering from post dramatic stress disorder and need some help to find her way.  Unfortunately there is no timeline craved in stone when it comes to healing emotionally.  If you can ask her to come to this site, it is comforting to talk to others that have been in the same situation.  This board saved my sanity when I was diagnosed and for the first few years afterwards.

 I wish you and your sister the best!

Michele

Thank you.....<3....I cried too while I was writing it......felt good to get it out!!

sisterhelp08: It sounds like you are being very loving & supportive...You just want her to be happy & to enjoy life.....unfortunately, there is not much we can do about a person's happiness.....She has to take charge of that........it does sound like she has some very unhealthy thoughts.........it has got to be heartbreaking seeing her feeling so hurt all the time......and frustrating I would imagine too!!! My son is schizophrenic and I used to find myself frustrated beyond belief when he wouldn't believe what I was trying to tell him or find comfort in my words....this just happened to him a few years ago......he was a "normal" boy before that...(what is normal??LOL) After years of balling my eyes out with frustration and heartbreak.......I learned that I was the one that had to make the adjustments & changes within myself to embrace this new person my son had become.....granted schizophrenia & cancer are 2 very different things.....but I what I am trying to say is that you are not going to change how your sister feels....or what she believes about others......what she thinks about the intent of others.....you cannot give her happiness.......you must relieve yourself from these impossible feats and just love her like crazy and keep letting her know that!!!!! Keep supporting her and reassuring her....I hope with my whole heart that she finds peace and happiness.....sadly she may never.....this is ultimately her journey.......your continued love & support along the way will be one thing she will always know that she can count on being there........hugs and love to you.......<3....and your sister

Druanne, big hugs to you.  I too am an only child and I also had to put my mum into a hospice.  In fact, had to call the ambulance to come and get her and literally three guys had to lift her off her potty and put her in the vehicle because she refused to go.  Just totally tore my heart out.  She wouldn't let me stay with her at night and she lived an hour away from me.  I was there every day with her and on this particular day (September 11th in fact), I did two trips out to her.  Her feet were four times normal size and we found out it was because she wasn't going to bed at night - she was sleeping in her wheelchair.  I finally had to cry in front of her to get her to go and somewhere, on some level, that got through to her to let me get her the help she desparately needed.  She didn't open her eyes at all - that was her last defense.  I found a beautiful hospice for her as well, one that would let her smoke inside even but she never did do that.  She passed away 19 days later and rarely did open her eyes again.  I've often felt like I accellerated her passing by making that awful choice, because she really did give up when she couldn't be in her own home again. 

I hear you as well about the crying when  you write stuff like this.  Same here.  It is cathartic and also very healing.  I am so sorry that you are on this journey now without your Mum - I can't imagine how hard that must be for you.  Prayers going up for you now as well.  I've often wished I had a sibling too.  Druanne, I'd be happy to be your sister in spirit on your journey!

Yes, cancer does change people.  I'm watching it change my husband now and I'm hoping that, in a few years, he is still here with me asking for some attention. He had his esophagus removed November 21, 2011 and we are starting chemo and radiation that will take us through the next six months.   Yep, I think it's a given that near death experiences do change people.  How could they not?  And I think the rest of us need to respect and accept that.   I don't think there's such a thing as being able to "suck it up" when it comes to surviving cancer.  I think that accomplishment is one to be heralded and forever commended.  As someone also said in this thread - this isn't a flu that you can just get over. 

It sounds like you are a very caring sister. I think it is important to respect where she is at. If she expresses hurt by people not checking in on her anymore, let her. Why argue with it. Just acknowledge her feelings, you do not have to fix it. Listening is one of the best things you can do.

Many things change you as you go through life.  Breast cancer is one of them.  Being a manager with direct reports also changed me.  In the end, it affected my marriage and I am now single.

My learning is that a good part of moving on is getting your dreams back.  This didn't happen for me until I was about one year past active treatment.  Then one day, I said "it's over".  I don't think your sister has reached that point.

I choose to believe I am cured.  I know I am going to get flack for this, but I truly believe that.  The big difference in my life at this point is realizing I wouldn't be here if I hadn't gone for treatment.  So these are bonus years.

So what did I do the past month??? I celebrated as I never have before!!  No, nothing that outrageous, but with friends and out cycling and enjoying nature.   Plus, the work of getting my career back on track.  Still need a title for the article I am co-authoring with two male business colleagues.

I am putting together my New Year's Resolutions.  Last year, I aimed the bar too low.  So this year, major cycling adventures, plus the career part.  I am alive and not going to do stuff by halves.   No, never again.

Now, on to figuring out my Kindle Fire and what I do on my cell phone, vs Kindle, vs PC.  That one is my biggest immediate challenge.

Other than the title for the article so I'm ready for tomorrow's call.

Life really can be great again.....but you have to let go of being a patient.  Wishing you and your sister the most wonderful 2012. - Claire

rosemary-b,

As someone who is 10 years out from bc diagnosis, and as a sister of 2 sisters (one who has had breast cancer and one who hasn't), I thought I might have a say here.

Some of the changes are physical, from the cancer and the treatment. Even though we each got through it and the two of us are in remission, what I have found so difficult about it even after all these years are the unseen losses with treatment that go on and on. I continue to be angry that those things can't be changed back to what they were. I think some of this might be how your sister feels.

My younger sister is 9 years younger than I am.  We always did many of the same things and were able to share our clothes and outdoor interests, and I was especially happy about that.

With the steroids used for treatment, I gained 25 pounds. It took me 6 years to lose them.  While my younger sister could continue to eat anything she liked, and do everything she enjoyed doing, the very same exercise that would have taken weight off easily before treatment not only didn't help at all but I still gained weight. While she ate like a "normal" person, I couldn't even eat half as much as she did and I still gained weight. While she wore the great clothes I had bought just before diagnosis and never even got to wear, I wore sweatshirts and baggy pants. My diet was completely restricted, and there were no breaks for me from the constant need to exercise. Eventually I gained every pound back, bit by bit.

My hair grew back and is halfway down my back. It is thin now where it was thick before. My eyebrows and eyelashes are very thin now. My breasts sag now, from the tamoxifen and the years that have gone by. My joints hurt when I exercise, and I don't move as fast as I used to.

Your sister and I have other things to enjoy, but the changes for all of this were so sudden and so complete that I don't know how to get used to them, even after 10 years. People don't "see" all these miserable changes and the impossibility of ever having what you still have again, and I still resent that. I think maybe your sister does too.

AlaskaAngel

Alaska Angel

Was your post directed at me or sisterhelp?

Those small changes are hard to bear especially when you know others  just want you to be glad to be alive. (I used to have really thick hair too-not any more)

Ten years out.  As with Alaska Angel, I deal with the side effects of treatment on a daily basement.  It's a big deal, but not a big deal.  It's just the way it is.  I found it helpful to reach out to others sometimes through this site and sometimes through friends whose friends or colleagues were recently diagnosed.  I just try to help, offer hope and focus on someone else's fears and concerns. Perhaps you can persuade your sister that her experiences will allow her to help others in a similar situation either through a support group, web side or friends of friends.

Good luck. 

My sister was whining about her 3-week cold on facebook and I wanted to say "I'll trade you my fibromyalgia or cancer for your cold, take your pick."  But it's not her fault that I have chronic illnesses and she doesn't.  And having a cold for 3 weeks does suck and I shouldn't discount it because it isn't as big as what I'm going through...I rarely tell my family what I'm learning and feeling.  It doesn't do any good to have everyone close to me obsessing about cancer.  (I'm doing a good enough job of that on my own!)...The cumulative experience on these forums is overwhelming.  I have learned so much that I haven't gotten anywhere else.  It helps to read what others are going through and to know I can share my fears here if needed.  I hope sisterhelp08's sister at least reads some of these threads.

So I decided to wade through the posts AFTER I responded and saw there were some responses with relatively similar thoughts.  My favorite was the response from Claire in Seattle but I have always found that I identify with a lot of the things that she says.

No flack from me, Claire,  I too believe that I am cured.  I think that belief totally helped me get back to normal quickly.  I hope I don't get flack for saying the following, but cancer did not change me.  So it just goes to show that we are all different in our responses and reactions, and there is no right or wrong, just whatever fits who we are.  I always saw breast cancer as a temporary bump in the road and treated it as such.  I also chose to keep my diagnosis extremely quiet and I think that was my way of not needed to be reminded "forever" by well-meaning people that I had gone through breast cancer.  I also didn't want to be looked at differently or as a victim, since I didn't consider myself a victim but rather just one in the statistical 8 who was diagnosed with breast cancer!

We're all individuals, and as someone pointed out, there is no one-size-fits-all in terms of needs or reactions.

Good luck to all, and God bless.

Trisha

Sisterhelp08 – Yes, it is scary when it happens, but it is healed by time. Except for the fact that the cancer, like everything else in life, will always be part of one's experience. I understand why you are worried. She needs to redefine herself, and to do that she needs to be involved in something else, to have her attention on something outside herself. Travelling, a new hobby, anything like that? And, of course, time. Feeling that people are impatient for you to move on can give you a bad conscience which may have the opposite effect.

I agree with everyone – it's really great that she has a sister who cares this much!

(Sorry, I sound like I knew everything. Of course, it's just guesses ...) 

My mother in law (DCIS 25 years ago, opted for BMX instead of the lumpectomies recommended by her drs so that she wouldn't have to do rads) just sent me a Congratulations card (you're a success!!) after I finished surgery, chemo all summer, one more surgery and then rads which finished at the start of December. I just don't have the heart or strength to let her know it's not over. I'm not "a success." I don't know if we got all the cancer. I'm still on Herceptin until the summer. I take Tamoxifen, and will do for 5 years if I can stand it, or if I don't recur. She just wants to believe all is sunny in my world, and there's no point in me bursting her bubble. I tend to avoid her, because it all feels too fake. I'm glad you're there for your sister. Please understand that it's not personal. We all have our journeys to undertake, and there are no real timelines for getting over bc.

I would say if she were 3 or 6 months or even a year past the trauma of BC, to just listen.  But for HER SAKE, she needs to move on and should probably seek professional help to discuss her feelings about where she goes from here.

4.5 years past treatment, is a long time to be hanging out there mentally

I'd gently suggest a professional