Home Forums Support and Opinion Forums Open Discussion Forum What makes you cringe? What do you think is most misunderstood?

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    • #1242 Score: 0
      John K

      In terms of being “cringe-worthy”, a close relative told me I should feel lucky that my brain tumor wasn’t worse.

    • #1236 Score: 0
      Jaremy L

      I guess what I think is misunderstood is that people never really realize what exactly I have. They just assume if you have a brain tumor it is cancer.
      I agree with everyone that has written here that if your tumor is just benign, then you should be fine after a brief recovery time. But this is not true and this bugs me as well as other here. Benign brain tumors aren’t cancer so it bugs me that they don’t really fit in the cancer category. Everything is about cancer and there’s no focus really on people that have had a benign brain tumor removed from their head.
      I was thinking also what makes me cringe and I thought about when you are introduced to others at a gathering or party. There is always the question of “What do you do?” meaning in terms of a job or career. Because of this, it’s hard for me to be introduced or talk to others because I don’t really have anything interesting to say in terms of much of a job or accomplishments. There’s usually not much of a conversation that follows “What do you do?” and people quickly move off to talk to others. The general thought by others is probably something like “Why can’t he do a full-time job like normal people in society or live life like normal people? Then he might have interesting stuff to talk about and we wouldn’t want to meander away to others so quickly.” If you try to talk about your brain tumor, usually people don’t really want to hear about it.

      So, just a little thought on the question.

      • #1239 Score: 0
        Beth Rosenthal

        Hi Jason. I understand about the career question. I was too sick to consistently to work. Even w/ a college degree I wasn’t confident. I thought teachers passed me because I was sick & felt sorry for me. And now I’m on disability & I don’t know anymore if I could work a full-day. Children aren’t given much of a chance at anything. It’s tough.
        Unfortunately, we need to learn to be proud of ourselves in other ways than just employment. Do you have any interests? When I felt like that, my mom used to say that I could make up something. Now that I started IJB, I educate about the lack of understanding about benign brain tumors. I won’t stay on the topic too long. But it’s too important. If people ran a hospital, were a surgeon, etc. they bring it up their serious occupation. So bring up your challenges, etc.. Surviving this from childhood is exhausting. So be proud of yourself.
        I hardly had any emotional support since my diagnosis. People were there for the surgeries and radiation, but not so much w/ follow through. And I lived decades without that support. That’s why I started IJB.I started IJB when a brain cancer survivor referred to a benign tumor as the good kind. My confidence has skyrocketed running IJB. I’ve learned a lot about business, etc. Most importantly, I’ve learned how to educate about benign BTs and have learned to really value everything I’ve accomplished. Of course, I realise I’ve missed out on a lot and it’s sad. But educating about benign BTs is empowering. Obviously I bring up IJB, but I educate about all 1200 member experiences and how their life has been impacted. It’s an incredible feeling. I hope one day you’ll feel that.
        So think about what you send out. You’re as important as everyone else. And braver.

        • #1241 Score: 0
          Jaremy L

          Thanks, Beth.

    • #1234 Score: 0
      Mary B

      Me too, with friends dropping out. but have found others who stepped in and are being helpful. I am 2 years and 3 mo. out from craniotomy with partial resection and have most of tumor still. I had one of my best friends tell me, a year out, that my BT was giving her too much stress and haven’t seen her since. Like I could help not being the same! Even many physicians don’t get it, esp. brain surgeons, many of whom are in deep denial of the effects of what they do, almost like it would be a personal reflection on them, if their patient wasn’t” doing well.” I had one write that in notes, after we had just discussed my seizures, headaches, diplopia, cognitive issues, ect. . I asked his nurse later, if he thinks his saying it makes it so? I have found the neuro-oncologist much more objective and the epileptologist pointed out all the damage, scar tissue from surgery and mass effect from BT on temporal lobe as causing my partial seizures and was first one to really listen, understand and validate my symptoms, concerns, ect.. She is a keeper!

    • #1232 Score: 0
      Misti M

      People think that since you don’t have cancer that nothing is wrong and you should have no problems whatsoever. Few, if any offer support and other than the day of surgery no one checks to see if you need help dressing, bathing with meals anything! Maybe I just am lacking in the true friend department. Also people think you get your brain hacked open and 2 weeks later you should be where you were way before tumor was discovered. It’s very sad the people that have dropped our of my life due to ignorance of the condition.

    • #1230 Score: 0
      Amanda

      What makes me cringe is that it seems that so many people are supporting my husband more than me when he tells them I have a tumor……….makes me sick actually!!

    • #1228 Score: 0
      Jane E

      *I think people think “benign” means it’s just some piece of lumpy tissue that can be taken out and everything will get back to normal. Once the hair grows back people think everything else is back to where it was pre-surgery., too. I know I have learned a lot about benign tumors, and the brain in particular, since my surgery. I realize I will never be the same as before, so I am trying to make my deficits fit in to my post surgery life. You better believe if I hear of someone in my community that has a tumor I will contact them and offer them support!

    • #1226 Score: 0
      Susan

      I was on the phone today talking with a close friend of mine….I told her about the tumour and that it is benign….her words to me were: *If you’re gonna have a tumour – a Meningioma is the one to have?* Hmmmmmmm….still shaking my head on that one, like I picked Meningioma like I pick out a Big Mac at McDonalds…..Ya…I’ll have a McMeningioma to go, cuz I heard that’s the one to have…..my thoughts on this one….Pfffffffffffffffffffffffffffffffffffffffftttttttt =)

    • #1224 Score: 0
      Ralph H

      just don’t get me started.

    • #1222 Score: 0
      Betsy H

      There have been so many cringe-worthy moments, but the one that stands out for me is when a neuro-surgeon refused to answer my questions because I would just “imagine more symptoms”. As if the vertigo, the numb tongue and the tinnitis were all imaginary! Needness to say, he wasn’t involved in my treatment (although he was quite eager to cut into my head).

    • #1220 Score: 0
      Dellus

      The brain injury effects on your emotions and intellectual performance like: memory, speed, vision, route finding, set-shifting. The public is very ignorant and somewhat scared by “THE BRAIN”.

    • #1218 Score: 0
      Lisa

      Just because I look fine doesn’t mean I am. My hair may cover it all up but on the inside I changed dramatically. Just because my tumor was benign doesn’t mean I am “in the clear.” I still have annual MRIs and doctor’s appointments. I have a permanent drain in my brain. This December/January marks the 20th anniversary of my diagnosis and two surgeries. I thought about having a celebration but that time of year I always feel out-of-sorts. It is as if it is 1989/1990 and I just had the surgeries. I can still hear the words so clearly, “There is something in your brain and it needs to be removed.”

    • #1216 Score: 0
      Sonia J

      I think for myself and my daughter the hardest thing is “Oh thank god is not cancerous.” Although we are indeed grateful it is not a fast growing tumor with dia and unpredictable a shot timelive, it is hard to hear those words, especially when I see the effects on how this Tumor has changed my daughter’s life. My Daughter has a possible DNET tumor, aout 4.5CM in size in her right Occipital, Parietieal lobe. She get headaced each and every day, at 13, could you imagaine, ready to start your teenage years and sometimeou get soo fatigue you can’t go out to play, you can’t hold your head up, or the tiems when she wakes up and temppary loses her vison, it does not matter if she has a non-cancerous tumor. Although she is thankful for all the good, it’s hard when your left side keeps having all these weid things happeninging to it and the doctors say, lets’ watch and wait to see if you have seisures or if there is growth….awwwww….it so hurts me for her. To all suffering forma Brain Tumor be it Beneign or Magliant, know this, a brain tumor once diagnosed is certainly life changing. No matter how, it changes your life. My neighbor has a beneign tumor as well and I knew this lady 10 years ago, now her life is so changed you would not believe, with all the changes daily in her body. I understand what people may mean but I say to everyone, in whatever moutain or journey you travel or climb on this road of a brain tumor, stay strong, positive and NEVER give up, and most of all continue to share your experiences.

    • #1210 Score: 0
      Norry B

      While I can understand how everyone feels about other people saying things like “at least it benign” I can also say that I think its a blessing for it to be benign vs. malignant. My niece, Jess, died of a malignant glio 06/04/09. She was 28 y/o. She lived for 2 and 1/2 years after diagnosis. I went to the E.R.(because I felt like I was drooling) two days after she died and was told that I needed to have a CT scan to rule out a tumor. A week later I had an abnormal scan then had an MRI that verified that I had an acoustic schwannoma that was 2-2&1/2cm. I will have surgery on 08/17/09. I am nervous and having surgery is scary, but I still feel blessed that it wasn’t malignant and wish everyday that Jess would have gotten that diagnosis. I also hope that I don’t offend anyone by my response because I don’t want anyone to think that I don’t feel like having a benign tumor is serious and it should be taken lightly by other people. Thanks, Norry

      • #1212 Score: 0
        Terri L

        Yeah – terrible if it is cancer but there’s not enough concern or awareness for non-cancerous growths. People need to be educated. Usually, if you have cancer of any type, they go for the urgent and immediate treatment. With benign tumors, its sometimes a wait and see approach, unless there are symptoms. So the waiting/testing/monitoring and eventually treatment is long and drawn out. Takes a toll on you when you know what’s there but can’t really do anything about it – so you worry and wonder. And I get mad when I am not taken seriously.

    • #1208 Score: 0
      Shelley L

      I’d like to throw in my vote for “Gee, at least it wasn’t cancer” as the all-time ridiculous response to telling people about my brain tumor. I also run into disbelief, dismissal or diminishment of my ongoing symptoms, being told that my short term memory loss, difficulty with word-finding and fatigue are due to my age (I’m only 54!!) or that my inability to work full time at a career I had for 25 years is due to laziness (which is masqueraded by the term “deconditioned”)

      • #1214 Score: 0
        Terri L

        I feel exactly the same way – according to some people, my “tumor” is used as an excuse for getting out of “pulling my own weight” – be it at home or at work. I have the same symptoms you listed, and my Neuro doc dismisses them as being “part of Fibro flare or Migraine, not the tumor”. I have chosen another doc for another opinion.

    • #1200 Score: 0
      Anna-Stina T

      1. People tend to think I had cancer (I learn here that this is a common misundestanding).

      2. When I was in hospital, everyone I new thought that I was going to die. Because that’s what you do when you have a brain tumor. I learned this lots of months after the surgery.

    • #1196 Score: 0
      Kristen

      Wow. I completely agree with everyone. People think, oh its benign, your fine….

      But anyways, the other day I found a scholarship for people with cancer (it’s Cancer for College if yall are interested) Reading through the list of people who were awarded scholarship money, I noticed that one year an amputee won money and he never had cancer. Man I applied for that scholarship after I saw that…I probably won’t get anything but its the hole point of the matter…

      • #1198 Score: 0
        Beth Rosenthal

        The cancer word sickens me. Everyone has pity for those who have cancer. Now that I’m not as angry (because I found you on this site) I can speak more candidly about benign brain tumors. I explain that if my tumor grows back, my breathing and swallowing can be compromised. People really just don’t think about it until it’s spoken to them. Not that they totally get it but, I feel better now that I can verbalize it.
        I try to be compassionate about cancer in general. I know people that have passed away from cancer. However, there’s nothing for us. That’s why I’m adamant about this site becoming a nonprofit and growing from there. I know there’s a need.

    • #1194 Score: 0
      Phillip

      My grandmother was trying to be supportive the other day and told me that I was lucky that I had the kind of tumor (grade/location/etc…) and that God was looking out for me. I almost lost it. That kind of rhetoric is so nonproductive but people think they are giving you perspective or something. Like I need a freaking does of perspective? Most people in my life have been great and don’t offer anything other then encouragement. they don’t get specific, but my grandmother always finds the worst thing to say. She also told me I was lucky that I had good health insurance, wtf??? I don’t call finding a good individual policy at 25 and paying for it for 5 years w/o using it LUCK. I call that preparation and foresight that I hoped I would never need. This idea that we are somhow “lucky” really pisses me off. It isn’t that I don’t appreciate that others have it worse than I do at the moment, but that is life. That is like telling someone who was layed off and lost their retirement that they were lucky because they could have been killed in traffic accident. One has nothing to do with the other. We still have brain tumors which are exceedingly rare and potentially fatal. That is not any kind of luck that I ever wished that I would receive.

      • #1204 Score: 0
        Terri L

        I totally hear ya! Ridiculous. When I tell people I have a benign tumor, I can literally hear them breathe a sigh of relief. So then I say “But the sucker will grow to the point where it will cause severe headaches, siezures and fluid buildup, and I will need surgery to remove it – so Yeah, I guess I’m lucky its not cancer!” That usually puts things in perspective for them.

        • #1206 Score: 0
          Barbara

          I guess we all get the same remarks. If only they knew. It sounds terrible, but with cancer at least you’re pretty sure where it’s going. With “benign”, you know it’s going somewhere, but where? Kinda like having both arms amputated at the shoulder, but so lucky they got it all.

    • #1188 Score: 0
      Bruce B

      This is probably what every benign BT person cringes at….when someone asks…”Was it cancer?” and I answer, “No, it was benign”, and they say, “Thank God”…..WHAT DO YOU MEAN THANK GOD????
      Anytime you have something growing and taking up space in a confined area (like the skull), it is a BAD thing. And the disabilities can be just as bad…Benign just means it isn’t growing as fast as cancerous. That’s it! It will still kill you just as dead!!!

      • #1192 Score: 0
        Brandi S

        AMEN!!!

      • #1190 Score: 0
        Cheri

        TY Bruce….I get that all the time…..and yet ppl don’t understand. Even family

        • #1202 Score: 0
          Terri L

          Yep – even family…

    • #1186 Score: 0
      Beth Rosenthal

      What do you think is most misunderstood about having a benign brain tumor?

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