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Do you really think it can be beat?

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Honestly there has been so much sadness here lately it makes me question what my expectations should really be. I do not want to just put on rose colored glasses and believe because I am NED that I have truly beaten cancer. I mean can you beat it for good or only win a few rounds to be taken down later by it? But then I think I am missing the whole point of being NED and that means being happy in the moment and tomorrow will take care of itself. What about you, where are you at with this?

dorookie
Posts: 1736
Joined: Jul 2007

Made me cry too, WOW what a wonderful way to look at things.

thready's picture
thready
Posts: 475
Joined: Sep 2009

I have been out of treatment for a bit over 3 months now. I also wonder if we can beat cancer, but I have come to the conclusions that we need to live life to the fullest no matter what. I was hesitant to move forward, thinking I would wait until my 6 month scans, but then through a few minor setbacks I came to realize that if I don't go forward I might miss the best part, now I am making plans, looking at the future, and living each day.

Bernie Mack was interviewed a short time before he passed away and he said you never know, it could be here today-gone today so live today because we never know. I think this is great advise.

dorookie
Posts: 1736
Joined: Jul 2007

I am curious after hearing all of this, what do you think now?

Beth

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Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Graci,

Darlin you read that wrong. I am not a vet. We call the hospital down here in the country the “vet clinic”.

Before I retired, I was the director of customer service for a major credit card brand.

Kerry

jams67's picture
jams67
Posts: 927
Joined: May 2006

PTS is what most of us have. Most of us have been through or are going through hell. On the other side you are left with a shell of a person who has to be put back together emotionally and physically. No wonder at times our emotions are a little shaky. Once when saying the Lord's Prayer, it dawned on me "Thy will be done" and then I quit worrying about the "what ifs" of life. We never know, let God worry about it. We could die being run over by a truck. Just enjoy your life and always "look forward...
Jo Ann

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I am glad I am NED, it gives me the opportunity... a second chance to try and eat healthier and be active...to try to keep the cancer at bay, without going through chemo or radiation. I know I may not be NED forever, but it's good being here!

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tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

at least i went quickly. this cancer thing is new for me. it's messed with my future plans and i don't like that. i try to live day by day but even that's hard when i have extreme fatigue an have to lie in bed. than i plan what i'm gonna do with my renovation house and what i'm physically going to do tomorrow, such as the laundry, sweep the floor, etc. the next morning comes and i'm weak and tired. then i forgive myself and say well maybe after chemo i can get some serious work done. then i think about what if i die soon, i need to get my affairs in order.

i keep reading about remission followed by another bout of cancer and chemo and i really don't know if i want that life. life for me is about quality and not quantity. God there's so much to think about when your life has changed with a dx of cancer. stage 4 and i look sick. i saw my primary care doc for the first time last week, i love him dearly, and he politely told me he wanted to do an iron test as i looked bad (but he put it a nice way). i said no i just have one a few days ago. it worries me that i look sick, i feel beat down, that's when i have to think of estate planning. can it be beat, yes i think so, my Mom beat it. but it was caught early. is that the difference, yes i think so, but there are always exceptions. hopefully all of us are exceptions.

i spent the last three weeks in bed mostly. the home care nurses made a mistake with the 5fu dosing. instead of three days (46 hrs) i ended having the pump on five days. it really did a number on my energy. it's amazing how my attitude is directly related to how i am feeling, hmmm, don't think that's anything new. but another chemo round today and if they (home health care) got it wrong this time, i'm going for blood.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"i spent the last three weeks in bed mostly. the home care nurses
made a mistake with the 5fu dosing. instead of three days (46
hrs) i ended having the pump on five days. it really did a number
on my energy. it's amazing how my attitude is directly related to
how i am feeling, hmmm, don't think that's anything new. but
another chemo round today and if they (home health care) got it
wrong this time, i'm going for blood. "

My mind is going 90 mph, but I'm speechless.

I trust you notified your oncologist? If not, do so. And notify
the management of that home care provider. If you don't have
an attorney, you might want to consider talking to one, and
providing data if and when the time comes that you may desire
to have an attorney on your side.

Chemotherapy isn't something to fool with.

Take care.

John

coloCan
Posts: 1956
Joined: Oct 2009

with the caveat that the positives in your life exceed the negatives.....steve

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

and i hear it over and over here and elsewhere. attitude is everything, look at the positives. well i know i'm not the only one, but many people have had a hard life and i am one, many people have no family, and tho i have a huge family, i may as well have none, as i choose not to have those pains in my stoma in my life, got that from you John. i am widowed, live alone, no children. not many friends, you get the picture. am i still a good person, YES i am, even tho i am a big believer in karma, and i struggle with whether getting cancer is bad karma.

my message is that there are many people like me who have had bad times and find it hard to find the positives some time, they deserve to beat it also. it doesn't mean giving up, it just means i have to fight harder, find the small things that matter, and if i can't that day, i will tomorrow. eh, i hope that made some sense.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

my nurse immediately called my oncologist office and told them what happened. the trainee nurse took care of hooking me back up.

when i saw my oncologist for my chemo the next monday (which i did not do because i was not recovered) he got upset and wanted another home health care co. i am the one who said no, i like my nurses, they made a mistake. well maybe that was a mistake, but if they just sent the same three or four nurses things would be okay. my nurse yesterday is a trusted one for me and i told her what my doctor had said. so i am sure it will get passed on between the nurses and i will either be the hard one to deal with or the one to be careful with, i don't care. just treat me with respect and do your job right. for now that's where i think it will rest. i have a hard time with new people coming into my reno house. it should be documented (i will find that out) in my file, if needed in the future. but to be honest it scares me why it might be needed.

SueRelays
Posts: 489
Joined: Dec 2009

Live life like it is short, and hope to God it's long!
Being dx'd with stage IV means this crap is probably going to kill me one day. Sometimes to know and think about how you're going to die, is just too much for me. HATE when those thoughts creap in to my brain......but then like I told Kathy "Do I really know how I'm going to die....Hell no. I could get hit by a car tomorrow.....or there is that whole 2012 theory hahaha". SOOO many things to worry about!!!

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tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

thank you Graci for that info. i googled it and found more articles on the subject. i didn't want to drag this huge post to the top again, but then again, maybe someone new like me will see it.

i didn't get an overdoes, but if they had reset the infusion rate the opposite way, a faster drip instead of slower, i would be in trouble now. i really gave the nurse a thorough going over of what she had done this time and she was very cooperative and i was satisfied. one way for me to tell it's working right is it cycles every three minutes. but i will be a vigilante now, making sure no joking or talking is going on while being done. the nurse who unhooked me yesterday said that chemo drugs were always double checked by two people when she worked in the hospital.

and yes i know what you mean about asking questions about your infusions. we have one nurse who is kinda defensive if you ask her anything. it's rather sad. they should enjoy sharing information to help you be more informed too. seems like it would make their jobs easier. but it's out bodies, and our lives, so be it if they don't like it. what comes to mind for me, is what my cancer therapist says. it's all about me now. take care of me and the rest can care for themselves.

Lotus's picture
Lotus
Posts: 4
Joined: Jul 2010

What is NED? Yes, I think it can be beaten. I have a sister who is ten yrs after treatment now!

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome, Lotus. NED = No Evidence of Disease

AnneCan
Posts: 3692
Joined: Oct 2009

Yes I think it CAN be beat; we just don't individually know if we WILL beat it. We have to believe we will. One of the things that keeps me going is all the stories, here + ones that I know of personally where huge odds have been beaten. I do believe in positive thinking + one of the tools I use if I am feeliong down is to repeat in my head positive words I have heard as well as remind myself of the longer term survivors who inspire me every single day.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I just wanted to thank everyone for their replies to my question. I love hearing about how everyone has dealt with their diagnosis. It has been very uplifting.

Beth, I am not sure exactly how I feel about it still, I guess I am just a work in progress. But I want to be the old me again, I think I can get close to that, but not completely, knowing everything I know now. Brooks, I loved your story, I hope you get your 5 minutes and much more. And I love Eric's view of "the only way to truly heal is if you can get to a spiritual and mental state where you are not afraid to die." I hope we all achieve that, and I believe we can.

I have never really liked the analogy about "You could get hit by a bus tomorrow" as a way to dismiss fears of death or shrug off things. We all know there is a big difference between knowing you could get hit by a bus tomorrow and having that bus flying towards you, huge difference.

But again thanks everyone, there are many of you who responded, that I have not mentioned above, but enjoy reading your thoughts just as much. I want to take parts of what you all believe and carry it with me, you are all so amazing. :)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

:)

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm not sure that can ever happen. Maybe it has to do with what stage one is at but I know that I will never be who I was pre-cancer. Physically or emotionally. Cancer, for me at least, was a big change from what was my normal. I have found that through the years cancer has given me a series of new normals which I can accept or deny. They are there for better or for worse.

I do not find that the analogy of being hit by a bus tomorrow to be dismissive or shrugging death off at all. I find it to be very realistic. Maybe the saying is over-used (I think it started out as being hit by a streetcar but they are not around anymore) but what I have found out in the years I've had cancer and been a part of this board and other support groups is that very many people are convinced and/or obsessed with the notion that they can ONLY die from cancer. I do not understand how that can be helpful to anyone at all but apparently it is or else so many people would not do that. There is no one size fits all with how we successfully deal with (or do not deal with) cancer. It's all a matter of what works for you.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Never knew the "old Phill" but I sure do like the Phill we have now!!!

Love ya
Brooks

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

My husband is currently NED for the second time since he was diagnosed. After the second reoccurance we just try to live everyday like it was his last day, because tomorrow if cancer doesn't kill him, he could get hit by a car and die. He is an avid motorcyclist, and people say to him all the time, "Aren't you worried that you will get in an accident and get killed?" He says to them, if i don't die that way, cancer will kill me eventually, so i am going to do what i enjoy and live my life to the fullest. It has taken me 3 years to catch up with him and his thought process, but i realize now, if it makes him happy then i need to let him do it. I even started riding with him, i don't ride my own - i am happy being a passenger. So the point of this story is - live life to the fullest, don't worry about the what if's or the maybe's - just enjoy the day for what it is and worry about tomorrow, tomorrow.
Sandi

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I think many people live their lives in fear. That doesn't mean we all should be reckless but if your husband likes to ride motorcycles, then go for it. I'm glad you are going along too.

Brooks, thanks for your comment.
Love ya too Bud!
-p

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