Some of us feel like We are Survivors (unless of course you disagree with that term)

WeAreWarriors
WeAreWarriors Member Posts: 12
edited June 2019 in Kidney Cancer #1

Thank you all for sharing your stories. I was hesitant to post because of a bad experience on another message board, I felt like my tumor didn't "really" count because it was so small and fixed so "easily". Well you know what? I am a cancer survivor! I had a 3.2 cm tumor in the middle of my right kidney. It counts! I had an amazing magician reach his hand through my belly up into my rib cage and literally take my kidney in his hand and with the help of a laparoscopic device cut it free and remove it back out through my belly. And then he stitched and stapled layer by layer and wrapped me up with a pretty bow. Well, okay no bow. But, it was Easter Sunday so I like to imagine my tumor was the golden egg and my surgeon was the lucky one to find it and maybe be even put it in a basket...

As I have read through your stories I have been strengthened. The Lion! I loved it. I had a terrible nurse on the last of 5 days in the hospital who told me over and over that I needed to go on the Keto diet... that my cancer would come back if I didn't! That my cancer was caused by something I had or had not done. It was shocking. I set her straight. I am 49. I had none of the risk factors. I'm very active. I eat well. I'm scheduled to complete my first triathlon in September!! 

I also read an older post from someone who felt that because it was "just" surgery and no chemo or radiation they felt bad and not sure about calling themselves a survivor or even saying they had cancer. I really really struggled with that at first. It seemed too easy. My sister had to do radiation for 5 days for stage 1 breast cancer. I sat with my mom getting chemo for the MDS that would kill her only 4.5 months after her diagnosis. (It was actually the chemo that killed her. Without treatment she has 18 months. Her body could not handle chemo and she died within weeks) Even my own sister said isn't it out patient Comparing her gallbladder removal to a nephrectomy!

Well here is my opinion. I am a cancer survivor. I am a warrior. I have cried almost every day. I have been in pain beyond anything I have imagined for almost 6 weeks. I am getting better each and every day. It is a long road with turns and curves and bumps and wrong turns here and there. I am scared. I will go have CT scans every 6 months For years to come. I will worry about recovery and recurring cancer. We are cancer Survivors. We are Warriors. We have earned the right to say yes, I had cancer. Yes I hate kale! No I am NOT going on the keto diet! This is my journey and all are welcome to join me but don't doubt my pain, or question why I still cry. I always say you don't know what you don't know. I do not know a lot. But, I know it can always get worse, and it can always get better. I love my life. I'm lucky to be alive. 

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Sounds a lot like my feelings.

    My advice as a 17 year warrier. Follow up on you scans. Seek help if your kidney function numbers are too low (they are always going to be a little lower than our 2 kidney brothers and sisters). Live life to its fullest. It took me 11 months before I went water=skiing again at age 50.

     

     

    icemantoo

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    edited May 2019 #3
    Right on!!!!

    Yes, you are a cancer survivor.  Surgery is the best and most effective "cure" for kidney cancer.  Pain and discomfort go with the surgery.  Radiation is not a cure-all; it is used only if the kidney cancer has metastasized to another organ; and then maybe they can shrink it so it doesn't cause bone pain or interfere with other organ functions.  Drugs---and you feel like you may have been run over by a truck.  13 years ago, the most "popular" choice was Sutent.  But only if they had an active site that could be monitored.  They didn't know at the time, that I had two other nodes that were growing, and would be large enough that the size differnce would be detected at 1 year post original surgery (had it removed) and at 2 years post surgery (had it removed.)  Now they have been using Sutent as a Palliative drug following surgery and it has been found to be not as effective as no drug.  And Sutent comes with it's side effects of nausea, fatigue, etc.

    When relatives or "friends" give you hog-wash, ignore them.  They know not what they are talking about.

    And if I wanted diarrhea, I'd eat Kale, 'cause that's what it does to me. No Thanks.  And one of my overweight friends keeps forwarding info on the Keto diet.  I'm too polite to ask her why.

    So glad the surgery went well, that you are recovering, and getting on with your life.

    Hugs and Best Wishes,

    donna_lee

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    #4
    Damn Right!

    Yes, you ARE a survivor.  You had to lay on a table, get knocked out, have someone cut you, the sew you up.  You had tubes and a catheter stuck in you.  You had to go through the rigors of recovery.  You had to deal with 5he emotions of being told you had cancer.  You have to live with the knowledge every day that you had it.  You have to wonder if it will ever return (and, yes, I think we all wonder about that, despite doctors’ assurances).  We’ve all done that or helped a loved one do it.

    The surgery to get your cancer out might be considered minor to some people.  I had the same operation you did for a 1.7cm lesion on my right kidney.  From check-in to discharge was a grand total of 25-1/2 hours.  So, yeah, some would call that minor.  To that, I often repeat what my dad used to say.  My dad, over his 90 years on this planet, probably had 20 or 25 surgeries.  Some were outpatient, but he also had a ruptured stomach ulcer back in the 60’s, one of the first quintuple bypass surgeries ever performed and six months later had to have his aorta replaced.  Dad was damn tough.  But when one of his doctors told him an upcoming procedure was “minor surgery”, Dad looked him in the eye and said, “Doctor, the only minor surgery is on someone else.”  That remains true today.

    Not only are you a survivor, by posting your story, you give hope to others who are just starting out on this road.  To me, that means your a hero too.

    As for your nurse, she was completely out of line.  I am like you.  The only risk factors I had at diagnosis were being male and being an old (over 50) fart.  No smoking, very moderate alcohol, no drugs and in very good physical condition.  I asked every doc I saw why I got this, figuring that they might have some insight.  To a person, they all shrugged and said, in essence, that fecal material sometimes happens.

    So, yeah, you’re a survivor!

  • AliceB1950
    AliceB1950 Member Posts: 237 Member
    #5
    This is my first post, so I

    This is my first post, so I hope I do it right.  I don't use the word "survivor." I had cancer, and now I don't.  Why would I want a disease to be part of my identity?  I'm not being argumentative, I really don't understand.

  • APny
    APny Member Posts: 1,995 Member
    edited June 2019 #6
    Alice, you're not

    Alice, you're not argumentative. Everyone has their own perspective on this unwanted experience. I personally don't like the expression "fighting cancer." Or even worse, "lost the battle to cancer." To me the implication is that somehow if you fought harder you'd have won. That's awful. I do agree with the original post that no one has the right to say another's experience doesn't count because the tumor wasn't large, or there was no chemo. Cancer is cancer and yes, even small ones can kill you. As for that nurse, she should be fired. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #7
    Welcome to CSN.  I hope you

    Welcome to CSN.  I hope you feel good participating on this friendly site.  I like your attitude and calling yourself a survivor and a warrior.  That is the banner I would be waving.  I'm on this site for my husband who was stage 4 at diagnosis in 2012.  I have read many posts over all these wonderful years of survival.  People are as unique here as they are out in the real world.  I've read multiple posts where people hate being called a survivor, and detest the word "journey".  Its hard to remember who likes what.  My husband chose to not tell anyone anything, except our kids.  He didnt want sympathy, a focus on his health, people's unsolicited opinions.  It was hard for me to keep the secret, but now I can see how beneficial it is, because life just keeps going on how it was before.  

    I work in the health care industry, and I would encourage you to write a letter to the director of nurses about your treatment as a patient.  I think it is vitally important, and it will make a difference and perhaps make you feel better too.  I'm shocked an RN would suggest a keto diet to a person who has kidney surgery.  The keto diet is high protein, and it wouldnt be appropriate.  Too much protein being hazardous.  The nurse was misguided, rude and overzealous.  If anything, they could have arranged a consult with a dietitian who knows these things.  My husband saw one before discharge from the hospital.

    Hope to see you posting here for a long time.  

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #8
    AliceB1950 said:

    This is my first post, so I

    This is my first post, so I hope I do it right.  I don't use the word "survivor." I had cancer, and now I don't.  Why would I want a disease to be part of my identity?  I'm not being argumentative, I really don't understand.

    Hi Alice.  Glad you posted

    Hi Alice.  Glad you posted and shared your opinion.  Personally I think that's the best part of sites like this.  We can learn from eachother.  

    I can think of one very good reason to be vocal and proud of being a cancer survivor.  When people come together and are United and vocal the organization that they belong to gets funding for research for a cure.  I believe that happened with breast cancer survivors.  It's just the most important reason I could think of to mention.

  • AliceB1950
    AliceB1950 Member Posts: 237 Member
    edited June 2019 #9
    a_oaklee said:

    Hi Alice.  Glad you posted

    Hi Alice.  Glad you posted and shared your opinion.  Personally I think that's the best part of sites like this.  We can learn from eachother.  

    I can think of one very good reason to be vocal and proud of being a cancer survivor.  When people come together and are United and vocal the organization that they belong to gets funding for research for a cure.  I believe that happened with breast cancer survivors.  It's just the most important reason I could think of to mention.

    I'm a member of an on-line

    I'm a member of an on-line breast cancer group (not part of this site), and you'd probably be surprised how many current and past breast cancer patients dislike anything to do with the breast cancer awareness campaigns, and that whole pink ribbon thing.  Anyone who isn't already aware of cancer has been living on the moon, so the campaigns to "raise awareness" are a crock.  And way too many places that sell merchandise touting cancer awareness or support aren't actually giving that money to research or patient services, the places where the money is most needed.  Sadly, too many of these spurious fund-raisers are just to make the donors feel good.

  • WeAreWarriors
    WeAreWarriors Member Posts: 12
    edited June 2019 #10
    AliceB1950 said:

    This is my first post, so I

    This is my first post, so I hope I do it right.  I don't use the word "survivor." I had cancer, and now I don't.  Why would I want a disease to be part of my identity?  I'm not being argumentative, I really don't understand.

    sur*vi*vor


    This definition may not be you... but it describes me perfectly:

    sur·vi·vor


    /sərˈvīvər/





    noun






    1. a person who survives, especially a person remaining alive after an event in which others have died.

      "the sole survivor of the massacre"





      • the remainder of a group of people or things.

        "a survivor from last year's team"






      • a person who copes well with difficulties in their life.

        "she is a born survivor"








  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #11
    Thank you

    Thank you Alice for sharing this perspective.  Its definetly something to think about.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #12
    Survivor

    I am a survivor and a warrior.  2016 breast cancer and now UTUC.  I love the color pink.  I love raising awareness that there is not enough research being done for cancer of the renal pelvis.  I want people to know that we need all the support we can get because we are dying out here!  

    Hugs and prayers,

    Annie

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