Living with the Fear

Rachel1

My onc says to go forward and just live my life. Good advice if I didn't get stuck in a spiral of fear. I was dx in 2010 with IDC 4.5 ER+, grade 3, BRCA2+ 7+ nodes.I don't know how staging works, but even with all that 4 oncs staged be at 2B and an 80% chance that all will be well. However,  I must confess I come searching these boards for comfort. To see all the women living for many years... because, for me, cancer has that stigma. Then I randomly click on a name from 2007. Someone with a similar diagnosis and fewer nodes and see she's gone on to stage iv.  And then the fear and depression begin.  My therapist says to stay off the board.  Easier said then done when you're reaching out for support.  

Please tell me how you do it. How do you hold it together and stay mentally healthy?

Thanks, Rachel 

Momine

Good questions. First of all, I am not sure I hold it all together and nor do I think I should have to. Sometimes a doc will tell me something like "don't worry" or "don't be afraid." When you are living with cancer, you would have to be deaf, dumb, blind and stupid NOT to get shit-scared once in a while.

The thing is to come to terms and try to keep some perspective so the fear doesn't take over. So, one of the little exercises I set myself is to take a "what if" all the way. I make myself spell out what worst case scenario is, and then I think that through until I can deal with it. It may take more than one try. It also helps me consider what my choices are and what I might want to do about them, living wills for example.

Ihopeg

Hi Rachel,

 Even after 5 years, the fear never goes away. It may not be all you think about anymore and be in the back of your mind. I just make sure to get all tests and go to all doctors appointments. I figure I went through it once, I can do it again, and so can you!! 

diana50

rachel

it really does take some time to get to a place where you aren't so scared.  you really are still recovering from the diagnosis and treatment.  i have to say it took me a couple of years before i stopped being so scared.  after doc appts and good blood work...etc...you slowly begin to gain a little confidence . 

remember you got great treatment.  this is really important.  they did every thing they can do to help your body rid itself of the cancer.  remind yourself this.,

once again..and i know you know this; statistics don't apply to you personally.  forget numbers.do the things that helps you feel good; exercise...eat good....pray...whatever it takes.

i guess what has helped me the most; and i have talked about this before...is i KNOW that i can deal with whatever comes my way.  i have already done it.  i never think about "cancer will kill me:"  i always think if it returns that i will...once again..fight it.  i think you have to get your brain working for you.  be in the moment.  do today.  it takes training inside yourself to do this.  you will get better and better at it. 

i think the Holidays bring up our vunerbilities.  i think family....togetherness....love...kids...etc...makes us realize..."what would happen if my cancer came back"  well, if you are clear today..you are doing ok. try to not get too far ahead. 

i really do believe; that you have to train yourself to not get so far ahead...and know, that if you start looking like relapse...you will follow through and deal with it.  if not; you are doing great.  it is hard place to be; feels like ambivlance..which is hard to deal with...but that is what it is until you actually have a fact.  not knowing is what it is....and a hard place to be...but you can do it...if you focus on the NOW.  it takes time to find a safe place but you will.

diana

pupfoster1

Wow, Diana, nicely put.  I sure need to practice some of your words of wisdom.  I've been one of those anxiety ridden gals here whom with every new ache and pain that doesn't disappear let myself go to that dark place.  It truly is wearing!  I've been having pain in my back and just started PT this week and of course I'm worried as to what's causing it (that with some pangs under my arm pits).  I need to try to stay calm, and like you said live in the moment.   I just want to feel "normal" for some period of time.  At my age (49) it's hard to know what is normal aging or a possible problem.

Hang in there Rachel.  We are here for you.

Sharon

YATCOMW

A couple of months after I finished treatment I read a comment by a woman I think on the Komen discussion board.  She had just passed 6 years and because she was ER+ she was sure that this is when the tamoxifan would stop working and the cancer would come back.  She had worried herself for the six years previous that she was doomed at year six and lived those years in sheer panic.

I wasn't in a good place myself at that moment and I thought..."wow... I could be like her.... I could waste the next six years just worrying and not living."  That for me was the beginning of keeping myself distracted with travel with my kids, making memories, being a good soccer mom, etc.

I don't mean to make it sound so simple.....because of course it is not.....but this is a mental game....and the trick is to seize the days you feel good and do something with them.  And like diana....deal later if things change.  I have had a great 7 1/2 year run....and counting on more.  With my prognosis.... I could easily have wasted these years.

 Jacqueline

dontworrybehappy

F. E. A. R. : fuck everything and run or face everything and recover. this year was the first time i learned that i am not immortal. i took care of my 68 year old former pro-baseball player father when he was dying of cancer. if he was afraid,he never shared that with me. instead i was taught and shown how to live in the moment one day at a time by the experience. i was more than blessed because i no longer have a fear of dying. my father told me that we are not our bodies. how ironic, coming from someone to used his body for his career and continued to eat right and excercise till the bitter end. i saw that he was never in pain. the pain was managed the entire 9 months. he remained lucid until he fell asleep and gently left his body and went to either another dimension or where ever souls go. when i returned home from hospice that evening i swear i heard my father call my name in the hallway.



this year when i found my mass in my breast i looked right into the eyes of one of my fathers

baseball photos. i heard him say "everythings going to be alright". i took that to mean that either way i was going to be okay. my sister died at 48 from alchoholism. we were all by her side when we had them disconnect her from the ventilater. i am now 49, she and i were 5 years apart. i have met sooo many people that have died and been revived. they all have the same experience about going towards the loving light and being told that it was not their time.



i keep hearing from everyone that i tell about my bc situation about how brave i am and how well i am handling it. i look at it this way. we are not dead until we are dead. when it gets that close, you are so weak and not having any fun anymore and even food doesnt taste good. you realize that you have no quality of life and you WANT to die. youve made your peace with it and you say to God or the creator, take me im ready.



so until that day that i realize that ive lost my quality of life, im going to live each day and stop and smell the roses. im going to let people i know and dont know how much i appreciate them for what they do and who they are, and try to lift up and encourage the people who arent so happy or dont look so nice. im not as focused on myself or should i say as "self-centered" as i used to be. ive done the work necessary to get to acceptance of my diagnosis. ive cried, ive gotten angry, ive said why me then i ran into that book "heart songs" by that little kid that was in a wheelchair that was on oprah, he never said why me, he always said why not me. while going thru my dads stuff, mybmother and made sure to get our affairs in order while we were both healthy. so thank God i dont have to worry about that now. i dont put off doing what i can do today until tomorrow. i dont waste time anymore or sweat the small stuff. i remind myself that im a spiritual being having a human experience and one day i will be out of this body and on to whatever the next thing is.



breast cancer diagnosis has taken the word "boring" out of my life. im eating life with a spoon and savouring every mundane minute of it. i never really took life forgranted before, but now i really dont. thank you for your post, because it gives me a chance to see how far ive come in this process. someday you will be the one reaching out to help someone in your exact same place. then you realize that we all have a new strange gift, that maybe we really never wanted in a club nobody wants to join, but i feel an added purpose in life. i hope ive helped you.

Nel138281

Rachel,

Wise words from everyone above.  I think we may have the same therapist,but then he says in the next breath, I would be doing the same thing so lets figure out how to manage it.  A recommendation to me was that we will allend up standing on that slippery wet rock, feeling like we may slide under any minute.  Itis OK to be there,feel overwhelmend, scared, terrified sad , whatever you are feeling. But before you slide off,move yourself over to the dry stone right beside you. It is more solid, not slippery and will provide a safer ground for you.  You get there by taking the positive from wherever you have had it, a smile f rom a friend,or a stranger, positive words from your Docs, the sunset, the snowflakes, feeling good that day etc. 

We will stand on both stones on this journey as well we should.  The more time we spend on the dry stone the better for you and your journey.  It takes practice, I actually invision the wet stone and me moving.  Hope this is helpful

Gentle hugs,

Nel

MiniMacsMom

I have found comfort in a few different things, I am stage 3 and BRCA 2 +.  I am only 28, so I have 50 years to plan of fighting all the things that are now headed  my way.  The most comforting thing by far is finding a treatment team that I was confident in.  My team at home in KY left me freaked out ALL the time, constantly on xanax, not sleeping NO eating just a mess.  I went to MDA and I have been soo much better.  Mostly when I freak out now its from something non cancer related...  One of the oncs at MDA said its not about being positive ALL the time, its about accepting the cancer and moving forward.  She said you have to accept it, fight it and move on.  Its not about constantly being Mrs Perky Sunshine all the time, but to minimize your time in the dark place.  The ones who just pretend nothing is wrong, she said, were the ones who don't do well.  Another friend, she's a PA in psych for Vets said not to try to "let everything go".  She said that does work for a lot of people, but to try to visualize yourself pushing away the dark thoughts.  She told me pretending the problems/worse case senarios don't exist won't work, but if I get to that "dark place" to try to just push it to the side as much as possible.  I thought this was weird at first but it seems to work for me.  The other day when Eva Ekvall passed, it sent me to a dark place, but I kinda put a mental image in my head and pushed it over  and was able to move on with my day.  I know every technique doesn't work for every person, but I hope you find something that helps.

Momine

MiniMac, it makes sense to me what you are saying.

LRM216

Don'tworrybehappy:

I have never seen that definition of "FEAR" before I read your post.  Thank you so very much for sharing with us (me).  As I sit here this Christmas Eve morning, reading all the posts, and still living with the fear that I have managed (most of the time, fairly successfully, but not all of the time!) - it will now become my new mantra.  Such wise words!

I wish everyone all the best, and may the love and serenity of these holidays wrap all of you warmly in the arms of family and friends.  May the new year bring us all peace, and the promise of many, many more years to share with loved ones.  God bless us all.

Linda 

jennyboog

Great post everyone!  Rachel, I was dx in 2010 also so we're probably in about the same time frame.  I'm still dealing with the fear some but have noticed it getting better with time.  I had a terrible time at the beginning accepting that BC had happened to me....it wasn't at all in MY plan.  I am a believer but still thought I had control and I never truely handed it over.   I had to let it go and realize I'm not in charge and accept the fact that my time was my time and nothing I did would change that....that has been so hard for a "control freak" like me and I still struggle with it at times.  I do try to stay as busy as I can so I don't have time to think about it, some would say I'm in denial but I have accepted that I HAD BC and I don't now.  I will not allow it to take anymore from me than it already has.  This might not be the best way to handle this situation but it's my way and so far is working for me.

Rachel1

You have all given me a wonderful Christmas gift. Thank you for your responses. I feel blessed by each one. I think I needed to hear that my feelings are normal and I also needed you to give me a kick in the pants. Thank you. I'm going to print these out.

Love,

Rachel 

spendygirl

Thank you all - I have a confession though.  I'm 49, my son and DIL are 31 and expecting twins via IVF, I couldn't help but wonder how many Christmases I'll get to spend with everyone.  I even imagined the family having Christmas without me.  I still get sad and even afraid every once in a while.  Reading your posts helps me to put my chin up and get on with it!  Thank you and healthy new year to all.

voraciousreader

I came to my breast cancer diagnosis from a much different perspective than most.  I had life saving emergency surgery on Christmas Day 1986 when I was 29 years old.  Not pretty.  Doctors weren't sure whether or not I would survive the surgery.  I did.  And then, eight years later, BOOM!  Life saving surgery AGAIN.  Soooo....when I was diagnosed with breast cancer and the doctors were telling me about my treatment options and prognosis, I was unperturbed.  I rationalized the diagnosis based on my previous experiences.  Having already almost died, INSTANTLY on TWO occasions...it just didn't bother me that I could possibly die from breast cancer, SOME DAY.  How I live each day with a breast cancer diagnosis is that SOME DAY, I might die from it.  SOME DAY, like today, I might get hit by a truck and die....TODAY.  The bottom line for me is that SOME DAY I will die.  But, until that SOME DAY arrives, I always say to myself in the morning, "If I wake up vertical...then it's a good day" and then, I start my day without fear or regret.  I see each day that I have as a clean slate and a blessing that I'm alive.  Not thinking about SOME DAY keeps the fear in check...

nowords

You can see my stats and how far out I am now. I too came often to the boards, at first lurking more than posting...looking for some assurance that I would be okay; bummed each time I found someone with similar stats who had progressed or recurred. I have said it before to others...going through this is a process. The time line is different for all of us. Some cheerleader types, or those with deep faith sail through mostly on the positive side of things---others go to dark places and need medication to get through it. Some land somewhere in between.

My own process was compounded heavily by instant menopause. I don't think I realized until I was on the other side of the insta-hormone swings that it had such an effect. I am normally pretty even when it is something to do with me...I gather information and process through knowledge...but I was a moody tearful mess for a few months from the menopause I think, and out of sorts for another six due to my reaction to getting used to tamoxifen. I also hunted every credible site and study looking for answers on my prognosis questions; I over did the vitamin and supplement stuff and the max healthy eating and no alcohol...and was mostly miserable....

A few years into it, my oncologist told me to relax...use moderation and just accept that it may come back or it may not...but live in the meantime....

I underwent DIEP unilateral reconstruction this year, nearly done and thrilled with my breast and the help it gave my lymphadema...I go weeks without thinking about cancer....

We are all genetically unique...someone else's stats have no bearing, really on yours. In time, you will relax and grow less fearful. If you don't and it causes interference in your daily life, seek help. I know that my cancer could return. I know that the treatment I had to fight it has side effects. I know that none of us has a promise for tomorrow...none of us.

Come here when you want to , leave when you can....come back and answer questions for others in the earliest stages...but know that the process of getting through a cancer diagnosis is as unique as the cancer we have...in your own time you will get there...be easy on yourself...all feelings are valid and sometimes it is the old "two steps forward and three steps back"....but this phase passes and you begin, one day, to LIVE again without the fear...it will happen....

jennyboog

Great post nowords!

faithfulheart

Ditto Jenny, Great post nowords!!!!! Thats the best I have heard it put....Well done!!

God Blwss all.....................

spendygirl

I think I was doing pretty well until the hysterectomy, six months post diagnosis.  It has had way more effect than I ever thought it would.  I don't even recognize myself in pictures.  I'm sure Femara plays a part in this, but I 'm having a very difficult time accepting what has happened to my body since then.  And I'm pretty sure feeling shi**y every single day plays a role in worrying about recurrence.  I don't know, it's all overwhelming sometimes.

Patriotic

Thank you for all the positive, inspiring words. I think going to the "dark" place is sometimes unavoidable. But, I do try to plan for the future and push forward every day. Some days that feels like denial, but I don't care. Every day alive is a very good day.



Dontworrybehappy, thank you for story about your Dad. I experienced the same thing when my own Dad was dying. He was not afraid of that nor anything else in his 80 years. It was very inspiring while growing up. I think I was pretty courageous BEFORE the cancer dx. But, cancer has a way of scaring the crap out of us! So, I do look to him for courage some days.



Happy New Year to everyone!

Nel138281

This is a wonderul thread.  Finding the balance between denial and being overwhelmend is a skill.  Some days easier than others!  

I wish days without fear or worrying for all of us

Nel

pupfoster1

Thanks girls as always for your great words of inspiration.  I've been struggling in that dark place lately (had a particuarly bad night last night) and needed to hear this today. 

Take care all,
Sharon

NancyD

Truthfully, I don't know how I did it...at least in a way I can explain. I think everyone finds their own way, the way that works for them. The worst time for me, emotionally, was between my diagnostic mammogram and start of neo adjuvant chemo. That included my meeting with a surgeon, oncologist, having my biopsy, getting the actual cancer diagnosis, and initial frustration getting chemo started. That was the only time I felt fear and anxiety, and the only time I needed medication for it.



Once the chemo started, I felt much more positive. I knew I would be able to handle it and continue working. I knew the chemo was working (that was a very helpful feeling to dispell the gloomy thoughts). I had faith in my surgeon and oncologist. Radiation was pretty much a non-emotional thing, too.



I have had other family members die or receive worse news since my diagnosis. It's just life. In looking at the various situations in my family, I have to wonder if I would rather die in a few years, just as I'm starting to age and wear down, or go the distance like my aunt, where the quality of life is really quite questionable for the past several years, and she constantly worries about her finances. While I would never take my own life, death is not something I fear anymore.

Gitane

It's good to read these posts.  Thanks everyone.  G.

diana50

i am on the same page as nancyd.  i think that having cancer is "just life"  my experience is that you just do what you can do.....enjoy each day...there are no promises for any of us...cancer or not.  we all got good treatment; i remember my last onc visit;;;;and i said:..."so the idea is that treatment worked.."  and my onc said yes.  what else is there?  i am not scared ....not any more....i feel free in some ways....but i always tell God..."i am not ready yet"    and so, i am almost 10 years out....when i used to pray for 4 years....who knew.  i think you just do what you have to do....love your peeps....let them love you....and go from there.  fear keeps us from enjoying life.  don't let it take from you.  if you are alive...you are well.  yeah, there are side effects. my body has not been the same since cancer; but i am cycling and enjoying my peeps.  what else is there?

mari55

Well, I am stage IV so I apologize for crashing in here, but I was interested when I saw the post.  Funny, I was DCIS in 1999 and never thought I would go to stage IV so I didn't think I had anything to fear before my bone mets diagnosis two years ago. In some ways because I have "crossed over" and know that eventually this disease will get me I have dealt with the fear and put it behind me.  I am stable with bone mets only.  I continue to work and enjoy my family, go on vacations etc..  I do hurt to some degree most days, so it isn't a walk in the park, but I am thankful for everyday. Fear will just rob you of joy so I would encourage all of you not to anticipate the worst but to take this awareness of life and put it to good use -live fully and love completely

Mari