• I once heard someone say that they didn't know that being a cancer survivor would mean this!!!

    Asked by GregP_WN on Thursday, September 8, 2016

    I once heard someone say that they didn't know that being a cancer survivor would mean this!!!

    I don't know what they were expecting.....But, fill in the blank. I didn't know that being a survivor would mean ____________________. What would you say?

    32 Answers from the Community

    32 answers
    • Ejourneys' Avatar
      Ejourneys

      The extent -- even my relatively minor extent -- to which "collateral damage" from treatment would change my day-to-day living for years afterward.

      And, on the flip side, the liberation of thought and attitude that comes from being (further) stripped down.

      over 4 years ago
    • Carool's Avatar
      Carool

      Ejourneys, care to elaborate on what you mean in your second paragraph? Intriguing.

      To fill in the blank: I didn't know that being a cancer survivor would mean that I'd feel a particular empathy with other cancer survivors.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      That I would meet so many wonderful people, that I would face my fears of public speaking, or that I would have so many wonderful opportunities.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      @Carool, part of it is that I am more relaxed, choose my battles more judiciously, have learned to let things go that I wasn't able to do before, all in the interest of conserving reduced resources. It's cultivating the art of Be-ing. It's a way to transcend crap. In general I feel more content because I've gotten better at living in the moment. I'm still proactive and an advocate, but my energies these days are more focused and less scattered.

      That said, I am still quite capable of losing it and melting down on occasion. :-)

      over 4 years ago
    • Carool's Avatar
      Carool

      @Ejourneys, thank you! I'm getting better than before at living in the moment, but I credit that ability to my aging. Hugs -

      over 4 years ago
    • kittykatt's Avatar
      kittykatt

      I don't know what they were expecting.....But, fill in the blank. I didn't know that being a survivor would mean ____________________. What would you say?
      But, I think that at the emergency room even though they hooked me up to blood thinners and I don't know whatever else I stayed very calm, When they came back to tell me the results of the CAT scans, they told me i had 6-12 months to live. And I wasn't even in a private room, the patient on the other side of the curtain heard the Dr. and I could hear him making comments about how the Dr.s were out of line telling not only the diagnosis but my life expectancy. I was too shocked to cry, and I think I stopped listening after that, luckily my cousin whom I live with was able to drive me to the hospital emergency room and she heard more than I did.

      over 4 years ago
    • kittykatt's Avatar
      kittykatt

      where is the question?

      over 4 years ago
    • meyati's Avatar
      meyati

      Living--most cowboys just don't survive. They say that we just crumble no matter how mild or what stage-Congressman Steve Schiff is an example. Stage 1 SCC on the tip of the ear. The 3 rabbis standing over his body in 16 months. And we have a high suicide rate-can't handle loss of quality and the monitoring. I think I've survived by telling them to shut the (H) ell up- get out of my face.

      Tomorrow morning I'm asking my 2nd oncologist why he even bothers to tell me to call him if I have a problem-- that was a bunch of crapola. I only called if the lab didn't have the order for lab work- I didn't call during or after treatment--- The other oncologist just about wet his pants. His face turned white. He left the exam room and started screaming at the staff.

      The stupid nurses- I've survived in spite of them.

      over 4 years ago
    • Skyemberr's Avatar
      Skyemberr

      For me it means I don't know the answer yet because you need to be a survivor for awhile to see the bigger picture imo.

      over 4 years ago
    • geekling's Avatar
      geekling

      .... would mean such an affinity to the concentration camp survivors.

      .... would mean so much less to life than I'd known prior.

      .... had any meaning at all. I went back to medicine based on the idea of effective cure. I had no idea about survivorship or a diminished set of abilities. In fact I presented my worst case scenarios, some of which I am stuck with as after effects of what was done to me, and explained that I did not wish to be involved with doctorly ministrations if any of these effects would be a consequence.

      I simply dont trust doctors at all any more. Im having a to do right now with a podiatrist who billed Medicare for procedures he did not do because I stopped him from doing them.

      No one gets to use me for their own personal financial benefit any more. I am nervous and paranoid and distrusting of most of the medical community and its ideas and especially its consequences.

      I dont believe that most doctors believe their own hype. I dont believe that most doctors understand compassion nor the rights of others to live or die in their own way. There have been Orwellian occasions where the State has gotten involved in forcing individuals to comply with western medical advice.

      If any of the doctors had bothered to listen to my complaints over the course of thirteen years of my doing so, I would not be blogging here. If they hadnt lied to me about the consequences, I would not be blogging here.

      As to whether I would be anywhere in this plain of existence is pure conjecture.

      Why, since cancer is striking almost one out of two people in th US, is it not being treated like an epidemic? How come so few doctors wind up accepting the same treatments they parcel out so casually?

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      I so agree with geekling

      over 4 years ago
    • Molly72's Avatar
      Molly72

      Me too Geekling, Pauline, Meyati! .......Some doctors are just so into themselves and so not into their patients.
      (Please note that I said "SOME".)

      Some of you are so very fortunate to have had such outstanding and exceptional care and experiences with cancer that I wonder if we live on the same planet. We have a difficult time understanding how we are so disparate.
      Therefore our experiences with survivorhood are completely different. I really am amazed how some here are so upbeat and positive. Perhaps if all us had been treated with the kindness, respect, and professionalism, we could share a similar survivorhood attitude! (Too many big words! LOL)

      over 4 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Changing my lifestyle, diet, and outlook on life in general. That I would become stronger in so many ways yet carry emotional scars and doubts for the rest of my life.

      over 4 years ago
    • meyati's Avatar
      meyati

      It's the nurses and phone answers-why are we having people with non-medical training doing triage?

      I got bit almost 3 weeks after radiation ended. The stupid nurses kept asking me if I had blood poisoning-sepsis. I called 3 times an hour for 2 days, and a receptionist went to the doctor and told him. The nurses never told him anything. I went in immediately. The ER gave me a low dose of the wrong antibiotic. I was sent to the main hospital's surgery ward and given 3 IV bags of Augmentin-the only antibiotic that cures Multocida pasteurella. The nurses never talked to the doctor about me calling. He made them all come in and look at fluid and pus running out of my arm. One almost collapsed-the other nurses had to catch her and sit her down. The next step for the progression of the disease was meningitis.

      I live live fear that multocida and lockjaw won't be treated. I'm fighting for lockjaw prevention-I called the insurance, and they have and do pay for an annual shot. It's the stupid CDC's 10 year shot. I'm asking this oncologist if he will allow me to get a shot again in Jan. He monitors my vitamin Bs, D, C- I still have to fight stupid pharmacists that think they know more than doctors.

      over 4 years ago
    • Yoouperh's Avatar
      Yoouperh

      I'm not sure if I'm a survivor until chemo is over, but the second they took my tumor...I really have to say I felt like...if I'm going to have this constant watch, to know my body is not really my own, to know this cancer took so much internally from me...I was not going to sugar coat the world anymore. if I don't like something, I simply say it, filter free. Not in a way to hurt people but because my life could be much shorter than I ever imagined, I refuse to do things that don't make me totally happy anymore, I won't eat things that I just plain can't stand. It's pretty liberating!

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      meyati I kind of disagree with you.I seem to get more answers and results from my pharmacist where I go.And they're more easy to get to by phone/and always answer their phones, or in person.I never get a call back after calling and calling anywher else.Even the insurance agency.I'm so tired of people that deceive you or lie straight out.I wish people would tell you things the way it is.Be open and completely be honest.

      over 4 years ago
    • meyati's Avatar
      meyati

      The pharmacists here lie a lot and think that they know more than doctors. I'm allergic to Neosporin and over the counter meds for cuts. I use a pay myself gel that cost a $100. My doctor prescribes it as it took almost 3 months for a cut to heal because of allergy problems. A doctor finally prescribed this- I was going in twice a week-and co-pays up the rear. This $100 med allowed my skin to heal over in 4 days.

      Now the battle is the the doctor prescribes this, the pharmacies insist insist on sending it to insurance to try to get insurance and MediCare to pay for it--It's part of helping the customer. The prescription gets lost. I need my yearly giant tube. I need to talk to the pharmacist in person and try to get a pharmacist to agree to fill this. I knew it cost a $100 when I called in a refill.

      Neosporin and bactricin causes my skin to fall off like a skin ulcer. I've spent lots of money to doctors and hospitals to get doctors to believe this.

      over 4 years ago
    • Boris12's Avatar
      Boris12

      Everything changes. I can't go back to the person I was yesterday because that person no longer exists. Life now has a "new normal" and that is not all bad. I have met so many wonderful people and had a lot of new experiences. I have support from places that I never knew existed.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      This is slightly off-topic, but I want to add this story to the comments above about billing.

      My breast cancer support group met earlier today at my radiation center. A few days ago I had gotten the statement from my insurer and noticed that a claim placed by the center had been denied because it had been submitted too late. My main concern was for the radiation center, which is wonderful.

      I brought the statement to the front desk, which checked with billing. I made it clear (and the front desk did in turn) that I wasn't concerned about whether I would be saddled with the bill. I wanted the center to be paid for a job well done. As medical claims go, this wasn't big ($60 for my semiannual checkup with my radiation oncologist), but still. After checking with billing, the front desk told me that they would absorb the cost.

      There are good docs and good medical staffs out there. I wish they were everywhere.

      The radiation oncologists who run the facility have a reputation for putting the patient first. They have advocated for patients (including a newcomer to my support group, referred by another member) who otherwise would have been misdirected into getting procedures that they didn't need. They genuinely care about people. I only wish that far more doctors and healthcare providers followed their example.

      over 4 years ago
    • kalindria's Avatar
      kalindria

      I didn't know being a survivor would mean turning my whole life upside down, ending my career, eliminating my ability to show dogs, permanently fog my brain and sap my energy.

      That all sounds so negative but being a survivor has also made me appreciate life, along with good friends and loved ones, and I spend more time soaking in the beauty of the natural world around me.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      I had to call for a letter yesterday that I never received on my oncologist leaving which was runned by Dana Farber just for about a year or two.Someone called me a couple of weeks ago to ask if I've gotten a letter about them leaving the hospital we go to for years with our children and ourselves..This makes all 4 of my doctors except my cardiologistand (my primary ( left over from 3 altogether) which I'm not too crazy about) that left within 5 years or so.Not that I want to go to doctors,but the oncologist and cardiologist are the main two that I may need.And no,they are not being replaced.It looks to me that this hospital is going to close down sooner or later.It's getting very inconvinient for us in our area .

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      I sometimes refer my life as the 11th inning because I have beat two cancers. But I also refer to it as a make-up test. I try to live a life of penance and self-denial. I am striving to pass the make-up test and get right with God.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      BoiseB God accepts you just the way you are and he will cleanse you.Don't have to get right with Him first.He's already done it all for us.There's nothing we can do to save ourselves. 1Cor.15:1-4

      over 4 years ago
    • meyati's Avatar
      meyati

      Pauline-I hear you. Many doctors are retiring because of all of the rules and restrictions placed on them. Because I am the way I am, my doctors lose money on me and are given bad Quality Care ratings that mess up their pay. Also, America isn't graduating enough new doctors.

      Clinics have been closing down too. Health costs have doubled in the last 6 years. I saw one estimate that 60% of those health costs are in administration. Doctors have to have many experts that can do the different codes that are sent to teh Center for Disease Control, Medicare,

      I know that you don't care to be lectured about all of the above things. I suggest that you try to find a very good Primary Care Doctor to coordinate your care. I had this discussion with what I thought was my main oncologist. He was mad because I asked him why did he tell me to call him if I had a problem and months were spent until this problem was acknowledged. what did he do for me, what could he do for me.

      I'll see him next year. The problem was that he started leaving. He never examined my cancer site this visit. I asked him when I'd see him next. He said -6 months.. I went out for the appointment. They said-12 months next appointment. I sad-OK and he lies-somehow I'm not surprised. I'll see him next Oct. I'd like to get rid of him, but if a get a cancer from the treatment, I probably need to be a patient of his.

      I hope that you find a doctor that you like, and that you feel comfortable with.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      They did not nor isn't retiring.They're just going elsewhere.There's too much rules , regulations and enpensive for them at this hosital.There's really no where else I can go to that's convinient.And I'm tired from jumping from on doctor to another.I only had one.the first one for years that I liked,but her family wanted to have her close to home(if that's the truth).And where she went don't accept my insurance.Another primary I had my insurance is not accepted where she went either.They're all trying to get away from the poor areas.

      over 4 years ago
    • meyati's Avatar
      meyati

      We have a wonderful world class region that's pretty cheap, so we do have some good doctors-just not very many doctors-good or bad. Hardly nobody takes medicare here. We do have 3 hospital Advantage Medicare Plans that many doctors refuse to join. Nationally, this is making patient access a problem. Doctors join to share billing costs, lawsuit insurance costs, secretary costs. Then they get unhappy.

      As you said, you live in a poor area, and the doctors are joining groups that pay them better. AARP and other advantage insurances aren't very helpful to us, for many different reasons.

      Molly is complaining about some of the same things that you and I. A person just has to keep trying. I don't know what else to say. I had lockjaw last year because doctors wouldn't let me have a tetanus shot. The government says to get one every 10 years. I don't know if it's Walgreen or the health system, but it looks like I'm lying about getting flu shots. I take the paperwork to my doctors, and doctors say that Walgreen does it. Everybody says somebody else does it and they won't copy down the info that's in my hands.

      over 4 years ago
    • DoreenLouise's Avatar
      DoreenLouise

      ..... that I would choose to be happy daily, regardless of the circumstances of the day.

      over 4 years ago
    • Boris12's Avatar
      Boris12

      I so agree Doreen Louise! Well said.

      over 4 years ago
    • lh25's Avatar
      lh25

      That everything would change. I'm still in treatment, finished Chemo and start Radiation on Sept 19th.

      There is a new normal already, that is both good and bad. I've learned how many people I have in my life I can truly lean on for help, who care about me and my husband. I used to worry about everything, I had to check the oven and stove before I could leave the house, and more then once turned around to double check the front door was really shut and locked. I'd dwell on things that never happened. I don't so that anymore. It's kind of like something really bad did happen that I didn't see coming, that all that worrying energy couldn't stop, so it's just not worth it anymore.

      On the flip side, I'm tired all the time, and can't do so much of what I used to. House cleaning and that kind of stuff, but also fun things like going to our state fair for the day

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      Pauline, I believe for me surviving cancer has been a very cleansing experience. However, I do believe God is not through with the bath. I do believe that I have not yet got rid of all the useless things in my life. I spend far too much time watching cat videos or playing games. I also eat things that are not necessary for nutrition. And I spend money on frivolous things. I know I cannot cleanse these things from my life. I fully recognize that I need God's help but I must be open to God's help.

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      There is so much we could put in that blank! Most of my answers would be extremely positive!! Mainly cuz I feel blessed w everything that has happened to me since dx in 2012:)) I've met wonderful people! I've seen my children rally n grow physically n spiritually! I've had a renewed appreciation of everything n everybody!! I haven't had much physically other than being a little more tired this less energy. But the rest the DT's have really maintained. Even w starting over again- I'm not scared or worried!! Mostly cuz I had n still have y'all, too!!

      over 4 years ago
    • Carole357's Avatar
      Carole357

      that BIG PHARM and so many doctors would make so much money off of my illness. I am truly a better person for the experience, and have had many helpers along the way, but the doctors are all richer because of my Day One stage 4 diagnosis. And after all that, how long WILL I be a survivor?

      over 4 years ago

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