January 15, 2001
Survivors, Travelers, Pilgrims, Warriors
Kathleen Allen, Alexandra Andrews, Karen Bailey, Charon Bennett, Elizabeth Brumage, Nancy Chinn, Sammy De Roos, Kim Farrell, Ann Fonfa, Doreen Jaskela, Ara Johnson, Gayla Lactena, Sydney Long, Norma Mailot, Karolen Paularena, Wendy Sheridan, Angela Sissons, Glenda Streiter, Trisha Tester, Jeanne Turner
It's more like being a P.O.W. We're living, breathing, fighting but always kept captive by this beast, and always hoping for release from the bars that try to hold us back.
Nancy Chinn (Rasa Lila)
I've struggled with this term too. I consider myself a player in the game now. After all, this is a series of moves, strategy, planning, like playing a chess game. I do consider myself the queen however :) Everyone plays in this game, some are pawns, some are rooks, bishops, and my onc is the king - he's calling the final shots. My kids are the pawns in this terrible game though. And I feel terribly guilty about this (I know, it's not my fault). My husband is the rook, the protector. See - it's a game :)
Very Good Kim!! And I agree you (we) are the Queen. I'm not sure I'll make my Onc King, don't want him getting too controlling. LOL.
...How about Trooper? Someone close to me had used the term in connotating the constant push forward. We have some good days and many bad ones, but the focus is still on dealing with the cancer and making strides to better our lives and to kill this disease.
From the oncology nurse:
The truth is, until we have walked in your shoes, even the most well-intentioned of us don't really know how it feels...we try, but we don't. Forgive us...
Yes. I like your word. Coincidently as I was praying the word pilgrim came to mind. Just like you I see myself as a traveler. Whatever the word we live it.
Sammy De Roos
I'm a FIGHTER......If this is the path I have been chosen for then I will go forth and find the end and what ever that might be I will be able to say I have walked the walk and taken the journey of a lifetime. Hugs to all
I also use the word journey a lot and am comfortable with that. So are we Journeymen/Journeywomen/Journeyperson? (like a plumber?) or if we are traveling down this highway we could be Highwaymen (women)? I've always loved to travel, so perhaps we're getting this now!!
To me, surviving a car crash, however you leave it, means that the crash has ENDED and you have NOT. So, I agree with all who have said that they will feel that they have _survived_ BC when they're cured.
Therefore, I consider myself a traveler, not a survivor, and I travel on this cancer journey, I walk or crawl or run this cancer road. Some days, weeks, months I am hiking uphill the whole way, sometimes I am running down it, laughing and crying in relief. I like the idea of journey because it says that I'm never in the same place I left, and it implies that I am not just fighting for survival, I am living each minute and learning each hour. At any rate, that's what works for me.
- Karolen Paularena
About this Survivor thing. I agree that we have not earned the Survivor title until and unless we walk away, dusting our hands, cured of the disease. And when will that time come? However, that being said, we all have survived something. We've survived the hell that is our doctors/nurses/health professionals giving us the bad news after the biopsy. We may not have survived breast cancer, but we have survived our diagnosis! Let's figure out a good term for ourselves. One that says we are still fighting for our lives.
You wrote exactly what I feel - how can you be a survivor with cancer all over your body and yes, one gets so extremely fatigued fighting this damned disease.
A survivor? What survivor of a war? Has not seen the end of the war? The endless chain of battles? What survivor of a car accident has not walked, or crawled away? As you say you have survived when the final bell has been sounded and you are alive. We carry the enemy in us, it is a burden, to carry, emotionally and without prejudice 24 hours a day, moment by moment; we are never free. The war is never over. A word? I can't think of one. Warrior? Maybe. Ground war, in the trenches with the much, the mud and the smell of death just over the horizon. WW I trench warfare with the mustard gas and the sound of horses and airplanes; all that is new and high-tech and old - primeval at our disposal. I am glad there are survivors, glad too be be alive... whatever I am....
Sammy De Roos
I feel every day I wake up and can look at myself in the mirror I am a survivor.
I have never used the term survivor. I have never been disease-free. To me survivor implies that you walked away from the crash. (Although, I suppose you can be paralyzed and still have survived the crash.) It doesn't make sense to me, and the ACS has so used that word arbitrarily and politically that I want no part of it. My mom is a BC survivor by their statistics- but she died of bc many years ago. What double-speak is dead survivors?
I call myself she-who-endures. I don't tell many people that, though. But in my heart I am picking up what's left of my life and enduring bc, not surviving it. It has me caught, and with every labored breath I remember that. I still haven't really found a word that works. I certainly have been a warrior but I am not always. All I am is one more woman who puts one foot ahead of the other and keeps going despite the disability of bc. Part of the isolation of this disease is the casual way we are called survivors- as if this is no big deal!!!
Hear, hear! We have survived the diagnosis and we are fighting for our lives. I guess that's why it's hard to get away from the military metaphors -- fighting, waging war, battling the disease. I think what I'm doing is just living with it. I'm not too happy with the term warrior, either. I certainly don't think of myself as a soldier, or a victim, for that matter -- another word that kind of bothers me. This is an awful diagnosis, but there are even worse things and I thank God that other than cancer, I am a healthy person with all my limbs intact.
I liked the POW image, and then a refugee image came to mind with all of us struggling along a muddy road trying to find a place of safety. And pilgrim invokes a spiritual journey, as well.
Likewise, Rasa, I've been down a bit. I haven't yet been through 10% of what some of you have, but at times I get so tired. Right now I'm the refugee sitting by the side of the road trying to regain some strenght to pick up my burden on go on.
I think that a traveler, journeying down the cancer road makes sense to me. Sometimes up hill, sometimes down hill. Speed bumps. Stuck in ruts. Smooth sailing - unknown landmines...it's all there. A flat tire, run out of gas...a good Samaritan to help us long. A mechanic (Doc) to attempt a fix. Sunny days, storms. Collisions.
It really is a journey and can't be fitted into one word fits all. Perhaps survivor is easier to accept before stage IV, when we had so much more realistic hope of really surviving cancer.
And for each of us our route is different. The one thing we share for sure is that there are no answers. Only questions.
Although it's a wee bit scary and I lurk with one eye most of the time, it's good to know where I can find the True Warriors who are blazing trails for the Amazons who follow.
I see myself as more of a traveler on this journey that I didn't sign up for. I didn't get a map at the onset of the journey so I'm not sure where it will take me in the future. I am just going along, enjoying whatever good I find along the way.
Yes! I do not remember signing up for this cancer journey. If only I could find out where to resign my membership. Instead, I am involved in the unknown adventure.
I am 14 years from bc and 7 years from mets. I am now having pain that warrants a bone scan and I may have another fight on my hands. I am a survivor. If it is possible to fight back and win more time I will do it. To me that is surviving. It is a never ending struggle. I know everyday that I have cancer, because walking is difficult. I could dwell on poor me, but, I chose to work 40 to 60 hours a week and play hard in my spare time. Okay so some weekends I sit and do nothing. But I am alive and still living.
My 2 cents. God Bless
Suzanne Olsen from Fl
Having cancer is a journey, so I guess I go with traveler. Sometimes the road is twisty and turny and it's storming on my head. Sometimes the sun is shining and the breeze is light and lovely. But the path is uphill all the way. Sometimes steep, so I sweat each step, and sometimes it is so hard I just want to curl up beside the road and take a nap. But so far, thank God, I have always had the strength to get up again and keep walking.
I'm not sure how long this road is, as there is no map. I can't see very far ahead, so I don't know the geography up there. I know that I have never thought that the flowers on any other road were as beautiful, though. There is lots to see and much beauty on this road. I sure wish it would level out some, though. And a downgrade would be a blessed relief. But I have never been so happy to be able to walk as I have been since I started this journey.
These days I often refer to myself as a woman living with breast cancer-terminology stolen from the AIDS movement.
But I like the concept I will survive!. I will be as fully alive as I can until my absolute dying breath.
This is a great piece! I want to share this, too, with my Cancer Support Group at church (all kinds of cancer). I just need to remember to take a copy next time I go.
Thanks to you and all the contributors to this fine work,