Cancer Survivor , is it tempting fate?

RaiderGirl

Hi friends,

I wonder how you all feel about being called a survivor. I was told that I am a survivor from the first day of diagnosis forward because I survived to be diagnosed, I survived surgery, I survived treatment, etc.

But I have very mixed feelings about that word because to me it denotes something that happened , I went through it and now its over. Like I survived a car wreck or a bad divorce.

I don't feel its over ( well its not over) so how am I a survivor?.

Saying it feels almost like a jinx. I think I would rather just say I am a cancer patient.

Does anyone else feel like this? Do you like (perfer, agree ) with the term survivor?

Do you feel that claiming survivor-ship is a positive or tempting fate?

Claire_in_Seattle

Agreed. I wanted to be called a "cancer patient" as well. Now, that I am way past the date I would not have lived to see without treatment, I do call myself a survivor. But much more likely to say "a trip through breast cancer 5 years ago". Because as time has passed, it's become just another one of those not fun events in my life.

My focus at this point is on living my best life possible: friends, meaningful work, visiting places (frequently on my bicycle), good food and wine, and generally feeling fab about things. I am blessed to have all these.

Good luck! I thought chemo was interminable, especially towards the end, when I knew I was going to emerge just fine. Even then, I made sure I planned fun things to do. Which reminds me that I need to update this year's list, including a trip to the coast with my guy. (Not planned, but most welcome, was meeting him last year.)

More to come. Not going to waste any "living time". Way too precious. You will get there. - Claire

Anonymous

I try not to label myself in any way. Survivor to me implies "victim" in my past, and I would rather just say "I'm currently NED" and move on. I had a student in one of my classes interview me for her research last year, and she referred to me as her professor who is cancer-free. I had her change it to NED and explained gently why we should change it.

Headed to bikram yoga and then to pick up trash in my lovely neighborhood forest for Earth Day. Like the other Claire, I try to focus on the present, stay busy with things I love (and luckily I have a lot to love) and let the future take care of itself.

Hugs

Claire in AZ

RaiderGirl

To both Claires.

Loved your replies. I agree also that survivor feels victim like. Add to that I dont feel like I survived. Its still in my life.

I will one day also use A trip through cancer.

You two are awesome.

moni731

Hi Raidergirl and everyone. I too am uncomfortable with the survivor term. I will not know if I survived this until I die of something else. I really did not know how to respond to people until one of my other Dr's said 'so you're in remission from breast cancer' and I said yeah, I guess I am. I have stuck with that.

Rockym

The term survivor sounds like someone almost died. I never felt like I was going to die. I was more scared of all the treatment then of some stupid 1 inch IDC (even with lymph node involvement) :-). Heck, I don't even think of myself as a cancer patient anymore since treatment is done and I am back to once a year mammos. So, I'm skipping the survivor and patient label and chalk the whole experience up to some shitty odds that are hopefully now on my side.

RaiderGirl

Moni731,

I tell people now that I am under cancer watch and preventative. There is no sign of disease. Wish there was a shorter answer.

Rockym: Well put. I never felt like I was going to die either.

Bren-2007

Hi Raidergirl,

Maybe survivor just means we made it through treatment.  When someone asks me I tell them I am 8 years cancer-free at this point.  I suppose remission would be a good term to use as well.  I never thought of myself as a victim.  Just bad luck to draw the cancer card.

Well said Rockym!! (Love your avatar ... is that Moab?)

hugs

Bren

MsPharoah

Good thread. In my view, everyone on the planet, sick or otherwise, who didn't die yesterday is a survivor. I hate the term when used to describe a cancer patient.

I consider myself to be an endurer when I am feeling sad, scared or having treatment/side effects and a thriver when I am feeling good.

MsP

NancyHB

Interesting and timely question, RG! I was interviewed last week for a local news special on BC. At the end the reporter asked if she could refer to me as a survivor. I said I never called myself a survivor when women I know will not survive this - it implies I got "lucky" and they did not. I also feel an amount of "survivor guilt" with that. But later, when talking with a friend who just completed treatment for her Stage IIIB (and considers herself a survivor), I realize the general public associates the word "survivor" with those of us who have, or have had, breast cancer. I still don't like the word but can appreciate the power it has for some women. She asked what I call myself; I told her I usually say I had breast cancer, and leave it at that. I have yet to find the right word for me

RaiderGirl

MsP I am blown away by the replies on this thread. All of you have so much wisdom and some funny as hell. I am going to needlepoint a pillow, one side will say ENDURER the side THRIVING. This way DH knows what going on in my head.

NancyHB Your statement to the reporter about others that wont survive was very gracious. I want every woman feel free to call herself whatever makes all this bearable. Indeed words are powerful.

Bren 2007 Being able to say cancer free for 8 years is truthful, encouraging to others and must feel wow for you.

jramick

I'm so glad you wrote this!!!! I think part of it is what I call "survivor guilt" with so many who struggle more than myself. Even those who have recurrent cancer, my pet peeve is that as long as ANYONE is alive today with this disease...right this minute....we are ALL survivors!!!! I do use the term survivor at times but prefer using the words...."recovering from breast cancer".'

katcar0001

I have a hard time finding a label for what I am as well. One of my friends called me a survivor recently, and it didn't ring right to me. Also, my MO called me "cancer free" and said that my breast cancer was "curable." Dummy me at the time did not ask about the longer term stats, which I will do when I see him again. I do not feel comfortable using any of these words. I prefer to say I was treated for breast cancer and am being monitored (too long). Everyone around me seems to want me to be more positive in my statements about it, but they don't have to live with it every day.

RaiderGirl

Katcar0001

Somewhere on this forum someone linked a video of an interview with the author of a book about the myth of positive thinking. I have a link below.

the author Barbara Ehrenreich explains why positive thinking is a bunch of bullsh*t. Suppressing ones feelings, faking emotions, lying to ourselves and other about what is real is more harmful than bypassing the stay positive myth.

Last time someone said that I had to stay positive I replied " Oh yeah, why is that?"

Their eyes were like this O O.

http://authenticallypositive.com/barbara-ehrenreic...

katcar0001

RaiderGirl, Thank you for giving me a big laugh! O O And thanks for passing on this vital information. I think it will help me feel less guilty. Why should I feel guilty?!

My bf is one who believes in the power of positive thinking and read John Sarno's Mind Body Prescription a gazillion times. I refuse to buy into the concept that I gave myself cancer by not resolving my unresolved "crap" (whatever that is). I don't think it's nice to blame the patient. We had that discussion again this morning (eye roll). If I used your line, I'd get an hour long lecture.

** edited for grammatical mistake.

RaiderGirl

Katie

Maybe Barbara's book might give you some choice comebacks for BF.

" concept that I gave myself cancer by not resolving my unresolved "crap" Ok I hate to call someones BF a dickhead, especially someone I dont know. But in this one aspect your BF is a dickhead. Unresolved issues doe not cause cancer, that is pseudo science bullsh*t.

Not only is blaming the patient unkind, its that is simply not true plus that accusation does absolutely nothing to help the patient.

If he believes his mind is powerful than one can deduce that him thinking that you caused your cancer is putting something incredibly negative in the universe and since he put it there it will bounce back to him.

Stay sayin'

AudreyB

A few weeks ago I saw someone post that they considered themselves a "cancer fighter".  That term stuck with me for some reason.

farmerjo

Audrey...cancer fighter - I like that.

RaiderGirl...I agree. I was always a positive person and somehow had it in my head that I would live to be 85. I would think about heart disease, etc., and ways to stay fit and healthy. I would always dismiss BC as no one in my family had it and I simply could not see myself getting it. I remember vividly, one day not long ago, sitting at a conference table with a bunch of women and someone just happened to mentioned the BC 1 in 8 stat. I looked around the table and thought "someone in here will get diagnosed but it won't be me". HOW WRONG I WAS. So much for my years of positive thinking.

RaiderGirl

Audry

My neice texted me day 1 of diagnosis: "Don't you be afraid, cancer should be afraid of you"

Jilly

OMG! that is so weird. I did the exact same thing. How cocky of me to think I was somehow shielded.

Hopeful82014

I've felt the same way, Kayb, since LONG before my dx. I told my husband that if the phrase ever crossed his lips or appeared in my obituary I would haunt him for the remainder of his life. (His response was more or less, 'well, then at least we'd still be together' - sweet, but clearly I need a stronger threat.)

katcar0001

Fighter doesn't really fit me or my personality. I can see how it would work for some. Finding a word that fits everyone is really tough.

Raider - My bf and I are definitely at odds on this whole issue. He thinks he cured his back pain by working on past resentment issues through John Sarno's methods. I do believe that holding in anger or other feelings can cause tension which can cause muscles to lock up. That is light years away from getting cancer. I am tired of his crusade to try to convince me. Hell, my doctor just told me I need an attitude adjustment. He phrased it along the lines of, what choice do you have? I need to work on those quips! I LOVED the article that Barbara wrote for The Guardian. She voiced everything I feel. It may be an old article but it is just as relevant today:

http://www.theguardian.com/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich

I cannot wait to read her book.

jramick

The "fighter" language Kay B ditto!!!!! Also just "be positive" while I do thinks it's healthy to feel and be positive.....you are exactly right that it's not a fair fight.

Cowgirl13

I love Barbara Ehrenreich as she really tells it like it is. I've read several of her books.

I've never liked the term 'survivor'--it sounds like something an advertizing agency made up to de-stigmatize cancer. I just think of myself as having had cancer and if it reappears, I'll be grateful for the time I wasn't worrying about it coming. I know that with the help of this board I could get through it.

When I was first diagnosed and going thru chemo, I tended to stay by myself, except for a few friends around because I felt the need to be upbeat around people. I only had so much energy and I wasn't going to use it up by putting on a 'happy face'.

I'm now almost 6 years out and can't believe i made it through treatment...I was so afraid of chemo and it turned out that I looked forward to going to chemo....great doc and great nurses.

Liz

gypsyjo

I have been referring to myself as a breast cancer warrior. After only a couple of months with this diagnosis, I sometimes feel I have fighting much longer and know so much more now. I know how we have all fought our own personal battles with the cancer. Not all survive but all have fought the fight.

 I also have some of the guilt. I only have 2 3" battle scars, had a one time radiation treatment, and no chemo. I was a lucky one, but have done nothing to deserve such a good outcome. At the same time, I have seen so many bravely go through so much and feel their pain. I also know that it can come back and need to be on alert. I need to be proactive and see a warrior as doing that. 

RaiderGirl

Kat

Truly tension back pain and cancer are from opposite universes.  BF means well, he found something that works for him in this book and he wants you to have the same.       Sometimes you have to remind a man that the differences ought to be celebrated . He's convex , your concave, your soft, he's not, he cant walk in heels and you cant change a tire.  Differences are good.

Kayb , The councelor at our cancer center also told me that to not allow for sadness or anger or whatever, is disallowing my feelings as a human being and its dismissing cancer as if its nothing. She also told me to look for the ways and things that helps make peace real for me.

Cowgirl. OMG when I read you looked forward to chemo it gave me shivers up my spine. I looked forward to radiation. Not for the rads itself but for the care and even humor that I got from the staff at the center. Its was people looking out for me that I didn't have to explain anything to.

 

ruthbru

I say, "I went through treatment for breast cancer in 2007. " And when they say, "But you're okay now?"  I reply, "So far, so good.....knock on wood......" (and then run around until I find a piece of wood to knock on). By now they think I'm a little strange and the conversation generally moves on ......or if they want to seriously talk about it, we can do that too.

Claire_in_Seattle

I say "I'm just fine now" and leave things there. Because that really is the case. The bigger surprise for me is the life I live, being now in my mid 60s. The generation ahead of me certainly wasn't vineyard camping, and doing distance cycling events. I did a run last night after work. I look and feel just great.

I do think we get to choose our life script. Not what happened, but our reaction to these events. I know that I chose to power through chemo....unless I absolutely couldn't move. Fortunately, that never happened (unless you count that amazing date rape drug Benadryl). I landed just fine at the other end. This was because I thought I would most likely live, and I needed to be able to earn a living.

The alternative would have been scraping by until 62, and then scraping by for the rest of my life. Because I have worked throughout this period, I am fine financially. I mean I need to be careful, but I can do most things I want to do. I eat lentils by choice, not because the only thing I can afford.

I know I am fortunate. I have lost 2 close friends in the past 16 months. Another former (male) colleague didn't make it with his breast cancer. So super-determined not to squander the time I have on this earth.

So it's fresh flowers for me, fabulous clothes from eBay, exciting work, rambles on my bicycle, gourmet dinners with candlelight, wonderful friends, time with the guy in my life, and plenty of ADVENTURES. Life is good. - Claire

RaiderGirl

Claire,

I missed exactly two days from work. But I did not feel good. I just kept that to myself. I told everyone I was fine and I slapped a smile on my face. It was a lie.

I continue to lie even today.

Dont you ever look in the mirror and feel sad about the changes surgery left behind ?

Dont you ever feel different from before? Like a dimmer switch was turned down?

Dont you have any SE's at all ? (or are you not on AI therapy?)

Dont you ever fear just a little bit?

Are there no changes in your skin, your sex life, your hair, your finances, your relationships ?

How did BC slam into your life and not leave even a dent?

Really , truly Claire. I am very happy that you look and feel great. I am happy that deciding to be this way actually made it be that way for you.

But for me this fucked up shitty asshole feelings I have nearly everyday is not because I choose to react this way to an event.

This is not a choice, an attitude or in my head. Its real. I struggle everyday but to all those around me believe that I look and feel great. Its a lie I let them believe.

But on this forum I tell the truth. Cancer changed everything.

NancyHB

RG - I'm sorry you're having such a hard time with this shitty disease.  Because it really is shitty, and the hand we're dealt is not one we'd actively choose, ever, and the after-effects are real, no matter where we land.

Going into Breastlandia I was terrfied beyond words.  I didn't know anyone else with BC before my dx; I was the first person in my family (IN MY ENTIRE FAMILY) to have cancer.  I didn't know what to do with all of this crap.  I thought I was going to die, each and every day.  And that fear is still there, in the back of my mind.  Can't help it - it's the gift I have been given by cancer (sarcasm intended).

My scar is ever-present; it sits just to the left of the middle of my chest, and any shirt or blouse that is cut lower than neck-high exposures this ugly, red scar.  I see it every day; the world sees it every day because I choose not to cover it.  It's a part of me, a battle scar if you will, that reminds me that (for today), I am on this side of my cancer.

Early on I decided to embrace my cancer as a part of me, a part of my journey in this life.  I placed it in my heart along with the death of my infant son, my divorce, the end-stage renal failure my son is currently experiencing, and other life-changing events. I grieved the life I had expected to have; I grieved the changes to my body, and my soul.  I needed to grieve, we all do.  I hate the cancer that invaded my body and turned my world upside down, but much like Claire I am making a conscious decision (second by second, hour by hour, day by day...) to live my life with joy, to appreciate every moment with passion, to smile and love and be happy.  That is not always possible - there are some moments that are dark and I am full of despair, but I keep trying to move forward.  I have to.  I fought f*****g hard -- through chemo and rads and surgeries and SEs and Tami and AIs and another round of Tami -- to get to this very moment.  I want to be fully present in this moment.

Maybe this is why the word "survivor" is so loaded for me.  I didn't "survive" this shit - that implies that this whole experience is over and done with, and it's not.  Every day can still be a challenge of long-term SEs and scars and feelings and worries.  But my daughter is getting married in September, and my son is still here, and my grandchildren keep me busy and smiling.  My parents are in failing health, and my relationship isn't always the greatest, and I could still stand to lose about 20 pounds.  But I don't want to miss any of that - good, bad, happy, sad, beautiful, ugly, painful, joyous.  I used to say that cancer changed my life, but I realize that cancer changed ME, and I am changing my life.

 

ruthbru

The saying I found that helped me: "It is what it is. It becomes what you make it."

The phrase 'you have cancer' is one of the scariest things you can ever hear. The treatments are going to be hard for everyone. The physical toll is going to be hard on everyone. (Of course, the how hard will depend on which options you choose and/or have to do and how your body reacts to each of them.) The emotional toll is going to be hard for everyone; your support systems, prior experiences in life (if you have lost a child, for instance, being diagnosed with cancer is not the worst thing that could ever happen to you), and your own attitude DO have an hugs impact on that part.

When I was diagnosed, I was really mad/sad/distraught....the whole thing.....but since I couldn't change the facts (which is what I wanted to do!),  I pretty quickly asked myself, "What is something good that I can MAKE come out of this?" And I did find things....I could try to be a good role model for my own child, and other children (I was a teacher) of grace under pressure. Everyone is the whole world is going to have sad/bad/tragic things happen to them at some point. I hoped that dealing with this in a calm, matter-of-fact, 'do what you need to do/ life goes on manner' could be an example for them when they faced difficulties of their own. I have also reached out to friends & acquaintances with the same diagnosis & helped them through the process; as a resource, someone they could ask questions of, vent to, just being someone who has 'been there, done that' is very, very helpful to someone at the start and I KNOW they appreciate it (when I was diagnosed, a friend who had been through treatment did this for me and I appreciated that more than words can say). And I decided that if there are things I want to do/see/experience, I better do them NOW! So I take more risks, go on more trips, try new things, take really, really good care of my overall health.... I am actually more healthy physically now than I was going into it. Just for the record; I had a lumpectomy (I have two uneven boobs....and yeah, I notice), chemo, rads, and 5 years of Arimidex. (none of which were exactly a walk in the park.... but I am extremely grateful to be here 8 years later talking about them!) And what I've come out with at the end is a real appreciation of health, friends, family, nature, everyday blessings....life, and an understanding that it is going too be short (no matter how long I live) so I better be out there enjoying it, to the best of my ability, NOW!!!!!

RaiderGirl

NancyHB, Ruthbru and especially Claire.

Forgive me...please. I was rude. I was mean. I am not like that.

I had a horrid night and am having a horrid day. Most of the week has been like this. I sweated through the sheets, I have gotten no sleep what so ever, I am foggy brained, tired, headache and overwhelmed.

I am alone in the business dealing with everything myself.

Honestly I should not log on here when the devil is on my shoulder. I turn into a beast too.

RG