• What do think is the most dehumanizing thing, big or small, that is done to cancer patients? I find being written on very degrading.

    Asked by gwendolyn on Friday, December 21, 2012

    What do think is the most dehumanizing thing, big or small, that is done to cancer patients? I find being written on very degrading.

    Being written on with Sharpie markers by surgeons, radiation oncologists, etc. really makes be feel like an object, not a person.  It's ironic that I feel this way considering all the much more unpleasant aspects of cancer treatment.

    18 Answers from the Community

    18 answers
    • Peroll's Avatar

      I think diarrhea is the mogt dehumanizing thing. Being unable to contain your bowls is about the most embarrasing thing. Having to run to the bathroom and hope you make it just sucks!

      almost 4 years ago
    • karen1956's Avatar

      taking your top off time and time and time again....it got to the point that I didn't care who saw my chest.....

      almost 4 years ago
    • carm's Avatar

      I think the most dehumanizing thing is when corporations use cancer and its victims for direct to consumer marketing. I've never seen so many pink ribbons in my life, Carm.

      almost 4 years ago
    • IKickedIt's Avatar

      I'm with Peroll...the diarrhea, although it's not being done directly to cancer patients by the doctors like being written on...was by far the worst, horrifying dehumanizing experience. Driving in the car on the highway with my teenage son in the car and not being able to get to a bathroom in time. I don't think I need to describe any more...

      almost 4 years ago
    • Sugarshine's Avatar

      Being made to feel like you are drug seeking when you ask to have your prescription renewed because your doctor pushed your appt back a week so he can see how the new chemo affects you. I take 100 mg of OxyContin, it doesn't come in a 100 mg tab. The nurse argued that I had to choose between the 80 mg OxyContin, the 20 mg OxyContin, or the 10 mg oxycodone I was prescribed for break through pain. Even though I had been on this dosage a while. My doctor finally came out of the room he was in with a pt and wrote it, but she made me feel smaller than small!

      almost 4 years ago
    • KRBaum's Avatar

      I think when the administrative staff is insensitive, and treat you like "just in and out, part of the procedure, don't hold up the line" type of attitude. For gosh sakes, its a hospital, not a ride at an amusement park. When a new doctor's office (I have about 10-12 doctors) wants to know why I'm there, it gets under my skin. Sometimes I really do want to say, "oh you know, I was walking by and thought I'd come in here for a needle aspiration biopsy, those sound fun, can I have one?" Seriously.

      almost 4 years ago
    • JennyMiller's Avatar

      I have to agree with diarrhea -- when I lost control on the couch -- I lost the last bit of dignity that I had left. Then to top it off -- while I was sobbing in the shower (saying "I can't do this anymore") - my husband proceeded to clean it up!! I still cringe when I think about it. When I was bald -- passing a mirror in the house would give me a reality check -- I could never believe that was really me in that mirror. Also, I agree with taking the top off. I was so uncomfortable at first but I also got to the point that I just did not care anymore. A very cruel thing that is said to a cancer patient who is trying to stay positive is "my sister (or grandmother or cousin, etc) had breast cancer and only lived 2 years". As Thumper said in "Bambi" ---"If you can't say something nice, then don't say anything at all!!!!"

      almost 4 years ago
    • DorothyV's Avatar

      I agree with you. My preop visit to the plastic surgeon they wrote on me with a sharpie. Then I had to stand there holding a sign while they took pictures. This was not only humiliating, but demeaning as well. It didn't hurt at all, but I held back tears until I got to the car. I sobbed all the way to the pharmacy. I know they needed preop and post op pictures, but it hurt my dignity nonetheless ! Even though they were very kind and respectful throughout.

      almost 4 years ago
    • gwendolyn's Avatar

      Oh, the pictures! Yes, that really adds insult to injury, doesn't it? Yesterday I was photographed in my radiation pose, bare-chested with arms restrained above my head. The (rude-mannered) rad tech said she needed to include my face because she wanted to record to angle of my chin. Great, just great.

      I can see how urgent diarrhea would be very humiliating, as several of you have said. The fact that it might limit your activities and willingness to go out to socialize which would be additionally frustrating.

      almost 4 years ago
    • Harry's Avatar

      I feel very lucky that I haven't had to face some of the things others are talking about. But, I think that a lot of the problem is that, in the eyes of many of the health care people, we are cases and cease to be individual persons. They would probably deny it, and may work hard to keep it from happening, but you can tell. I'm not really criticizing, the nurses really do try to be nice and to treat me like a person, but then things happen that tell me that the bureaucracy is still out there.

      almost 4 years ago
    • dealite2007's Avatar

      So far in my journey, I must say the administrative staff at my primary's office. My record states breast cancer...it's obvious. So when I needed a referral for a 2nd opinion on a procedure the staff person said, "we can't give you a referral unless you come in and see the doctor." I argued that it wasn't necessary. But, after work I went in...and boy did I go in. The staff member who I spoke with was there (I recognized her condescending tone on the phone with others) and I approached her and asked her for the referral and insisted on speaking with my doc. She had the nerve to act like she had no idea why I needed it so fast and made me say what my condition was because she wouldn't look at the computer screen for herself... "I have breast cancer" and I need it. The whole waiting room hushed and all of the sudden I knew I will never be just one of the crowd anymore...I felt like a leper.

      almost 4 years ago
    • abrub's Avatar

      Dehumanizing – good question.

      I can’t put side effects into that category, nor do I see the pen marks necessary to make sure the proper part of my anatomy is treated.

      However, as one who is prone to the rarer side effects and problems (the ones that they don’t bother telling you about, because they occur less than 1% of the time) I hated being told my nurses that I couldn’t possibly be suffering from XYZ , because they’d never known of anyone else to have that side effect. (My drs admitted that I was the “Murphy’s Law” of my treatments.)

      Also, while in the hospital and very sick, having managed to shift off the bedside commode, and lying face down on my, waiting for a nurse to clean me up (and having the window cleaners outside my 15th floor window looking in as I lay there, a$$ to the world!)

      Since giving birth, my general modesty has been gone, so having people look and poke became a little too routine.

      almost 4 years ago
    • SueRae1's Avatar

      I don't mind being written on. This way I know they are targeting the right areas during the procedures. The thing I found very dehumanizing, which the hospital has made great strides to fix, happened during post treatment follow up scans after my nepherctomy in 1995. The were delays on several occasions, one was 8 hours and I was shuffled to 3 different CT areas in two different buildings, drinking that awful oral contrast and a pic line inserted in my wrist for the IV contrast. Nobody told us what was going on, or how long things would take. I yelled at the last set of technicians about this it was 3:30 (DH left to pick up DD then 5 from school) I was nauseous , had the runs, and had not eaten since dinner the night before. I also made several official complainants to my doctors and the head of radiology.

      Now they keep us in the loop about everything. including how long I need to wait, even if it's only 5 min. I was once told they were running about an hour behind, registered me and told me to go out and come back in 45 min if I wanted to.

      almost 4 years ago
    • carolchristao's Avatar

      When I put the port for chemo, I woke up before the procedure has ended. I felt the stitches. I started crying and nothing in the world would made me stop. After the procedure finished, they sent me to a "recovery room" and I was still crying. I begged for some valium or anything to calm me down because I wanted to stop crying, but I couldn't. The nurse then said that she was there to take care of sick patients, not of a silly woman.

      Relating to side effects, diarrhea is the worst, undoubtfully. I want to go out but I can't.

      almost 4 years ago
    • Tracy's Avatar

      I was 14 when first diagnosed in the mid 1970's. I had to go to a hospital that at the time specialized in hard to treat conditions - I was stage 4 Thyroid cancer, I did not know at the time considered terminal. I had to go in front of a room full of doctors in a thin hospital gown (a shy teenager) and be talked about. Then have a parade of them come up and feel the lumps on my neck. I lost my shyness over the years of being in treatment but that was an experience that stays with me.

      almost 4 years ago
    • Lirasgirl33's Avatar

      I think for me personally, the most dehumanizing thing that has been done to me was internal radiation (Brachytherapy). Being laid on a stretcher for two days, unable to move, with a machine sewn between my legs. The radiation made me so sick I was throwing up on myself and I couldn't even clean myself or move. I was at the mercy of whatever nurse was scheduled with me. I felt helpless for the first time. I would not want to go through that again.

      almost 4 years ago
    • Nomadicme's Avatar

      I'll start by saying that most of my caregivers and related staff treated me with respect and consideration. Since I was in care for 1.5 yrs, guess some nasty had to happen.

      My worst experience, emotionally, was when I went to get my first chemo treatment. We all know how fragile we are. Plus with me this was shortly after a double mastectomy, I was a bit of a mess. I was told by the receptionist that they did not take walk in chemo appointments! Can you imagine the nerve? Who the neck wants to get chemo of they don't have to. The administrator showed up, and as I wasn't in the system he wasn't all that helpful either. I was crying so hard, and he told me I was upsetting other people. I finally found the nurses name in my phone, so they couldn't deny that evidence. But it took me almost an hour to find her name, and I was treated horribly up to that point. Up to that point none of the oncology nurses had bothered to come talk to me. At that point the nurse came out and scheduled me for the next day, after apologizing. My conclusion is that to most of this people, including infusion nurses, were just a paycheck.

      almost 4 years ago
    • Cindy's Avatar

      My worst experience was my first chemo treatment. I waited in the waiting room for two hours waiting to be called in while people who came in after me were being called in. I was beginning to pace the floor of the waiting room wondering if they forgot about me and worrying the more I waited regarding what my side affects would be. I finally asked why I hadn't been called in yet and the receptionist said it was because they were trying to figure out my insurance coverage and how much I needed to pay. She told me I needed to pay an extraordinary amount equal to my catastrophic limit and asked about a payment plan for first chemo treatment. She would not tell me the exact cost of the chemo treatment. She evidently confused my insurance catastrophic limit with my deductible which I already paid when I had my surgery. I was very upset and felt she was being evasive to all my questions and upset that I had to grapple with this right before my first chemo treatment. I was started to talk very loudly (maybe yelling at her) when my husband came up and told me that he would handle it. I went outside and did several laps around the medical center and then sat down in the waiting room and started crying trying to decide if I should leave and find another doctor and wondering how much waiting would affect my prognosis. My husband talked with the nurse and told them they better come and get me right away which she did. While the nurse was taking my blood to test it and give me medication prior to the chemo treatment the receptionist came and and told me a lower amount and I that I needed to pay a certain percentage of the cost of the chemo which I didn't think was correct - she incorrectly told me the non-preferred provider rate instead of the preferred provider rate which made me worry and made me upset again. I tried to change doctors after my first chemo but nearly all the doctors in our town wouldn't take me because I had already started chemo and they did not want to be accused of "stealing patients." I could have gone to another city but that would mean traveling about 3 or more hours each way. After that my husband took care of all the financial stuff via calling the doctor's accounting office which was in another state.

      almost 4 years ago

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