Please don't call me a "survivor"
As I come to the end of my first, initial and hopefully only round of treatment for lung cancer, I'm seeking suggestions on how to respond to those who want to refer to me as a "Cancer Survivor"; to those who want to give me a new "Birthday"; and to those who want to treat me as a 'hero' of some sort. To those who want to forever 'brand' me with my former illness.
I had a disease; I treated it; I was successful(hopefully) in overcoming it. Yes, it may (and probably will) come back, but until it does, it doesn't define who I am and it won't govern how I live my life.
I have 4 days of radiation left from this first/initial cycle and then 4 weeks of agonizing wait for re-assessment. I was actually quite fortunate in that I was able to continue working the last 7 weeks while undergoing radiation and chemotherapy with only 10% of my co-workers knowing what was going on - and that only because I told them. I was extremely fortunate that I suffered NO side effects from chemo and only minimal from radiation.
Any and all suggestions gratefully welcome.
Comments
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I understand
My son has an anaplastic oligodendroglioma---it's a grade three brain tumor. When talking about what he is going through, I have used the terms 'battling," "heroic," "courageous," etc. Not "survivor" (I wish I could) , since his prognosis is very bleak. I just want to say that I would never want to ever offend you or anyone else. I would like to just ask you to forgive those (and me) whose choice of words are offensive to you. I believe that these comments are motivated by concern, care, and probably love for you.
Could you say something like...."I appreciate your support but I don't want my identity to be determined by the fact that I HAD cancer," or something along those lines? Or maybe say, "Thank you for caring about me, but I am not a victim." (I'm just trying to brainstorm here... ) I think if you straight-up tell people what you have written here, in a factual way, not an angry way, most people will totally understand and will do their best not to use those terms, etc.
I've had a lot of people say a lot of dumb things to me, including our oncologist, who sai--after he told us our son's prognosis was 3 to 5 years-- "If you have to have brain cancer, this is a good one to have." Sorry...it was hard for me to feel grateful or lucky about my son having any form of brain cancer. But anyway....I'm able to overlook about 99.9% of other dumb comments because: #1, I know the motive behind the comments is a desire to help and to show love and support, and #2, I've said a lot of dumb things myself, and I want people to forgive me.
Congratulations on your current status!
Love and blessings,
Cindy in Salem, OR0 -
Thank you.cindysuetoyou said:I understand
My son has an anaplastic oligodendroglioma---it's a grade three brain tumor. When talking about what he is going through, I have used the terms 'battling," "heroic," "courageous," etc. Not "survivor" (I wish I could) , since his prognosis is very bleak. I just want to say that I would never want to ever offend you or anyone else. I would like to just ask you to forgive those (and me) whose choice of words are offensive to you. I believe that these comments are motivated by concern, care, and probably love for you.
Could you say something like...."I appreciate your support but I don't want my identity to be determined by the fact that I HAD cancer," or something along those lines? Or maybe say, "Thank you for caring about me, but I am not a victim." (I'm just trying to brainstorm here... ) I think if you straight-up tell people what you have written here, in a factual way, not an angry way, most people will totally understand and will do their best not to use those terms, etc.
I've had a lot of people say a lot of dumb things to me, including our oncologist, who sai--after he told us our son's prognosis was 3 to 5 years-- "If you have to have brain cancer, this is a good one to have." Sorry...it was hard for me to feel grateful or lucky about my son having any form of brain cancer. But anyway....I'm able to overlook about 99.9% of other dumb comments because: #1, I know the motive behind the comments is a desire to help and to show love and support, and #2, I've said a lot of dumb things myself, and I want people to forgive me.
Congratulations on your current status!
Love and blessings,
Cindy in Salem, OR
Cindy,
Many well wishes to you and your son.
Thank you for your suggestions - they are very helpful. And while I do understand these comments and phrases are certainly NOT in any way meant to offend, I am just looking for a way to tell people, mostly my doctor and her staff, that I don't appreciate them. You've given me some wonderful options to use.
I just don't understand the need of people, particularly those in the medical field, to "brand" everything.
From the Southwest
Vikki0 -
I have to agree...
akbrat,
I go with the flow mostly. I refer to others as they refer to themselves. I would never disrespect their decissions on how they decide to survive life. Your right on that most of us have survived worse in our life. I'm 52...and have lived through a tornado that took our neighbors lives but spared ours. Lived through Graves disease, and raised 3 children. I could go on and on, but you get the drift. I say live life as you see fit, and let people know you're uncomfortable with their labeling. Best in everything, Katie0 -
Hopekatenorwood said:I have to agree...
akbrat,
I go with the flow mostly. I refer to others as they refer to themselves. I would never disrespect their decissions on how they decide to survive life. Your right on that most of us have survived worse in our life. I'm 52...and have lived through a tornado that took our neighbors lives but spared ours. Lived through Graves disease, and raised 3 children. I could go on and on, but you get the drift. I say live life as you see fit, and let people know you're uncomfortable with their labeling. Best in everything, Katie
I just hope people can still call me a survivor 10 are more years from now.
.... Dan0 -
The Best Words That Work For Youakbrat said:Thank you.
Cindy,
Many well wishes to you and your son.
Thank you for your suggestions - they are very helpful. And while I do understand these comments and phrases are certainly NOT in any way meant to offend, I am just looking for a way to tell people, mostly my doctor and her staff, that I don't appreciate them. You've given me some wonderful options to use.
I just don't understand the need of people, particularly those in the medical field, to "brand" everything.
From the Southwest
Vikki
While I'm kind of new to this (diagnosis for fiance came last week) I have always felt uncomfortable referring to those who have struggled with any disease as "survivors".
I think you're a champion
In my life experience I too have faced the "branding" issue. So limiting but a reality of the medical field.
A wise counselor once told me to come up with my own "brand". Instead of saying "I have/had [insert technical disease term here]" it might be helpful to say "I like to think that I'm a [insert adjective here- champion, winner, stronger person, wiser person, etc.] b/c of my experience(s) with XYZ."
To the med folks who reference you as a "survivor" you're allowed to tell them that the term is unhelpful and inform them of how you would like them to regard, reference or address you. Words are important and make a difference and you can speak up for yourself and tell them what you want and need to hear when they speak to you (also they can't read your mind so telling them is a mutual win-win
So find your own words and speak your truth in whatever way works best for you 0 -
Labeling
I think for many of us, knowing cancer survivors gives hope. My husband survived cancer for 6 years before we lost him. The average for his type and stage of cancer was only 22 months. Yes, he was a survivor. I celebrate those who are surviving as opposed to labeling them. We all collect many labels as we go through life. None of them can define all of who we are. I have at various times been someone's child, wife, mother, grandmother. I have been several different occupational labels teacher, salesperson, coordinator, ect.. I have been a student, a voter, a, well, the list goes on. If the label grates on you, tell them. Since my husband held a job that put him into contact with many people, I was often introduced as his wife. I started saying, "Actually, he's my husband." It brought a chuckle and rarely did that person introduce me that way again. The medical people probably see many who don't survive. You may not see cancer as a defining moment in your life, but for many it is. Widow is a label I shunned at first, but it is a part of who I am. I don't have to like it to acknowledge it. Personally, I'm glad you are a survivor and hope you will continue to be one. Next time you are referred to as a survivor, just smile, and say, "You know, I don't really like the survivor label. I'd rather be thought of as just plain me." Take care, Fay0 -
You could break out in song
You could break out in song every time they say it. That Beyonce song. Somehow I think they'd stop. lol Or you could simply say, I really don't like that term and I'd prefer that you stop using it. I've had to tell people many things like stop asking me how I am, it's quite annoying. And the same as yesterday and probably tomorrow so please stop asking me every day how things are progressing. And stop calling my daughter, she's not going to answer you either because you want to talk about this for 10 minutes but I have 30 people who want to talk about this for 10 minutes. I just blatantly say it at this point. Most people get the point quickly.0 -
I couldn't agree with you
I couldn't agree with you more....I hate the word ... survivor ...too !! I was diagnosed with breast cancer 18 months ago, Dec.23rd 2010. I had a right mastectomy on Jan.31st, 2011 and that is all, I declined chemo and was told hormone and radiation therapy were not suitable for me. I feel fine, I don't regret my decision not to have chemo, I'll never have it, even if the cancer comes back one day.
First and foremost, I am a PERSON who had a disease, which happened to be cancer, I've had it cut away, but I now lead a perfectly normal life just as I did before the diagnosis...well, as much as I can. Yes, I will be happy when Christmas comes around and it will be 2 yrs since my diagnosis and the cancer hasn't returned, but apart from that, I'm fine. Sometimes I think a lot about what happened and sometimes I almost forget. Often when I hear of someone getting breast cancer I think...oh how awful, that's sad...then I suddenly realise, hey, I've had that too.
I do like to keep in touch with forums like this and sometimes I chat to a breast care nurse if something comes up in my mind I want to ask questions about. Sometimes I wonder when/if the cancer will return, which it probably will....but I live day to day. I'm not an invalid, I'm not cripple, I still have a good brain and I still laugh and cry like everyone else.....I'm normal !! Whatever that is.0 -
Being a ChampionPurity said:The Best Words That Work For You
While I'm kind of new to this (diagnosis for fiance came last week) I have always felt uncomfortable referring to those who have struggled with any disease as "survivors".
I think you're a champion
In my life experience I too have faced the "branding" issue. So limiting but a reality of the medical field.
A wise counselor once told me to come up with my own "brand". Instead of saying "I have/had [insert technical disease term here]" it might be helpful to say "I like to think that I'm a [insert adjective here- champion, winner, stronger person, wiser person, etc.] b/c of my experience(s) with XYZ."
To the med folks who reference you as a "survivor" you're allowed to tell them that the term is unhelpful and inform them of how you would like them to regard, reference or address you. Words are important and make a difference and you can speak up for yourself and tell them what you want and need to hear when they speak to you (also they can't read your mind so telling them is a mutual win-win
So find your own words and speak your truth in whatever way works best for you
Purity,
Thanks for your suggestions and you are particularly correct in that the medicos cannot read my mind and will approach me as they do the 90% or so who embrace the language.
Well wishes for you and your fiance as you go through this process. The best thing you can do is to be supportive of each other.
The social worker at my cancer center was a former co-worker of my husband which was extremely helpful! Unfortunately most people won't have this situation.
I'd like to share with you he told us the fact that we were both SO supportive of each other was impressive! He'd seen way too many relationships fail because the couple couldn't adjust to gender role reversals - of all things! The husband couldn't cope with needing to shop and the wife couldnt' cope with giving up making dinner.
I hope things work out for you.
AkBrat0 -
Break out in Song!Helen321 said:You could break out in song
You could break out in song every time they say it. That Beyonce song. Somehow I think they'd stop. lol Or you could simply say, I really don't like that term and I'd prefer that you stop using it. I've had to tell people many things like stop asking me how I am, it's quite annoying. And the same as yesterday and probably tomorrow so please stop asking me every day how things are progressing. And stop calling my daughter, she's not going to answer you either because you want to talk about this for 10 minutes but I have 30 people who want to talk about this for 10 minutes. I just blatantly say it at this point. Most people get the point quickly.
Helen321,
OMG!!!
Thank you SO MUCH for this!!
One of my favorite songs is Gloria Gaynor's "I will survive".
I pretty much know all the lyrics now but somehow don't think I'll get through them all before the point gets across.
THANK YOU, THANK YOU, THANK YOU!!
AkBrat0 -
Kindred SpiritAnnieTherese said:I couldn't agree with you
I couldn't agree with you more....I hate the word ... survivor ...too !! I was diagnosed with breast cancer 18 months ago, Dec.23rd 2010. I had a right mastectomy on Jan.31st, 2011 and that is all, I declined chemo and was told hormone and radiation therapy were not suitable for me. I feel fine, I don't regret my decision not to have chemo, I'll never have it, even if the cancer comes back one day.
First and foremost, I am a PERSON who had a disease, which happened to be cancer, I've had it cut away, but I now lead a perfectly normal life just as I did before the diagnosis...well, as much as I can. Yes, I will be happy when Christmas comes around and it will be 2 yrs since my diagnosis and the cancer hasn't returned, but apart from that, I'm fine. Sometimes I think a lot about what happened and sometimes I almost forget. Often when I hear of someone getting breast cancer I think...oh how awful, that's sad...then I suddenly realise, hey, I've had that too.
I do like to keep in touch with forums like this and sometimes I chat to a breast care nurse if something comes up in my mind I want to ask questions about. Sometimes I wonder when/if the cancer will return, which it probably will....but I live day to day. I'm not an invalid, I'm not cripple, I still have a good brain and I still laugh and cry like everyone else.....I'm normal !! Whatever that is.
Annie Therese,
Thank you!
As I mentioned earlier, I was a bit hesitant to post this initially because I thought I would get 'flamed'. But then I thought: "Surely there's at least ONE other person who feels the way I do."
So thank you for your comment: "I am a PERSON who HAD a disease."
I truly believe if there was LESS "OMG" focus on having cancer, more people would be able to maintain the necessary POSITIVE attitude necessary assist with successful treatment. In my opinion, too many people hear the word "cancer" and see a death sentence.
Re-assessment PET scan is scheduled for 9/21. That's when I will be making my decision as to whether or not to continue chemo if the first round didn't get everything.
Your story energizes me! Thanks for sharing.
AkBrat0 -
I totally agree!!akbrat said:Kindred Spirit
Annie Therese,
Thank you!
As I mentioned earlier, I was a bit hesitant to post this initially because I thought I would get 'flamed'. But then I thought: "Surely there's at least ONE other person who feels the way I do."
So thank you for your comment: "I am a PERSON who HAD a disease."
I truly believe if there was LESS "OMG" focus on having cancer, more people would be able to maintain the necessary POSITIVE attitude necessary assist with successful treatment. In my opinion, too many people hear the word "cancer" and see a death sentence.
Re-assessment PET scan is scheduled for 9/21. That's when I will be making my decision as to whether or not to continue chemo if the first round didn't get everything.
Your story energizes me! Thanks for sharing.
AkBrat
Let it be known that I am one person who had cancer!! I too personally dislike the idea of being called a "cancer survivor." Cancer does not define me! And for most folks' information (specifically the ones with long faces who came to visit me after I was diagnosed; they acted like I was already lying in my coffin! should have heard me vent after they left! ) there are many, many things much worse than cancer! And I've lived through a few of them, as have most of us, I imagine. I'm not moaning or pitying myself, but loving every minute of life, whether or not I stay cancer free or the next round is only 6 months around the corner!
I have at last found others who think like I do about cancer. Thank you, akbrat, for posting your thoughts on the subject!0
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