• What do you wish people would understand the most about what it is like to have cancer.

    Asked by RE16 on Wednesday, August 10, 2011

    What do you wish people would understand the most about what it is like to have cancer.

    80 Answers from the Community

    80 answers
    • Jamie's Avatar

      The people I told -- which was everyone! I'm not shy -- tended to respond at the extremes. Either they thought it meant I was dead, or they thought it's nothing and I should just get up and be better already. I realize that both those responses come from a place of fear. The truth is somewhere in the middle. I wish people would understand that, yes, sometimes I do feel like I walk with death beside me, every step, and this is a serious journey. But I'm also still a normally functioning person at home, at work, in my community. I guess it's hard for people to understand how we live in both worlds at once.

      almost 10 years ago
    • lovekitties' Avatar

      Most folks in the general public don’t have any idea what it means to have cancer.

      Once you have been given a cancer diagnosis, it is forever, no matter how many years NED you may be blessed with. It is always lurking in your mind if not your body. We will never be the same person we were. We live in the world of “new normal” now.

      I wish people understood that cancer not only attacks the body, but also the emotional and financial well being of the patient. If the patient has been fortunate enough to beat back cancer they may look well enough on the outside but still be suffering otherwise.

      Cancer takes from everyone, not just the patient. For every person who has to turn all their energies to fighting cancer, society has lost what that person might have contributed in other ways.

      almost 10 years ago
    • lynn1950's Avatar

      If people could understand how emotionally vulnerable we are when we first are diagnosed and in treatment it, it might help how we all interact and communicate. During that time, I mostly appreciated closeness, warmth, encouragement, and companionship. I didn't need sympathy, war stories, or to hear "how brave" I was.

      Now that I am a few years out from diagnosis, I prefer to be treated like everyone else. I have battle scars, but doesn't everyone? Like many veterans, my battle has sensitized me to my particular cause, so I prefer to stay active and informed about it. I don't believe this is excessive and appreciate the support I get from my friends and family when I engage in cancer related activities, like posting to this board. I like that I am able in some way to "give back;" many have been so generous and patient with me!

      over 9 years ago
    • PhillieG's Avatar

      Hi Re, good question. I would like them to not feel sorry for me. I would like for them to understand that it COULD happen to THEM so get those tests that they may have been putting off. The tests won't kill you but the cancer could.

      over 9 years ago
    • hummingbird's Avatar

      The most difficult thing,I think, is for people to understand that each person's diagnosis, treatment and attitude toward his or her cancer is personal and individual. I've heard so many people say to me--oh, I know how my friend, relative,etc. handled the treatment--so that's how you should too...maybe the reaction is due to feeling uncomfortable or not knowing what to say...but I just don't want to hear how someone who doesn't have cancer thinks I should handle it...I'm doing fine all on my own!!!

      over 9 years ago
    • RE16's Avatar

      Very interesting answers, I can pretty much relate to each of you. Thank you for taking the time to chime in.

      over 9 years ago
    • mamoladyc's Avatar

      I would like them to realize that they will only know what I am going through if they receive those three words themselves.

      "you have cancer"

      over 9 years ago
    • HHWIJN's Avatar

      What I would like them to realize is that when I'm vulnerable or fearful, allow me to express that (not wallow in it--just express it sometimes). Do not try to force me to supress my feelings by saying, "Hush, everything is okay, you'll be just fine and don't have anything to worry about". I think it's important to remain positive and optimistic, but it's equally important to be realistic.

      over 9 years ago
    • Brooklynchele's Avatar

      I's like to add something a bit different. After being a bit more than a year out from my diagnosis, I'm getting tired of people treating me like a fragile piece of china ("Are you sure you're ok?"). Cancer takes so much from us - our peace of mind, our identity, our sense of security, etc. - I don't like when others no matter how well meaning they may be take away the small pieces of normalcy I struggle to keep in my life. if I need something, I will ask for it. Treating me like a small child or a wounded animal does not help. Cancer is an illness that I had, it is not who I am.

      over 9 years ago
    • Nonna's Avatar

      that they will never understand; so just let me be. don't try to make me feel "positive" all the time. my life came to a screeching halt when i was diagnosed. there's no explaining that. just be there for me. leave it at that.

      over 9 years ago
    • Donnaakins' Avatar

      I was diagnosed right after a 27 year marriage ended in divorce. I was surrounded by so many loved ones when I was first diagnosed. As I started 21 rounds of chemo the cancer was obvious to the outside world through the visible effects on my body. People began dropping like flies. Not everyone, but the number was severely diminished.

      So, what I would say is VISIT the person. Money, Phone calls, text messages and emails are very considerate, but can never replace the human touch felt during a human visit.

      about 9 years ago
    • akiko's Avatar

      Good question. I was totally NOT ready for cancer diagnosis so what happened in my mind in a very naive way pretty represented what people would think.

      1) I thought I would immediately die. WRONG! This is a life long battle until I die with lots of financial difficulty and get all my family involved in a sad way. I really appreciate my family to support my situation.

      2) I thought every cancer patient and his diagnosis is the same. WRONG! I have so many friends who suffer from the breast cancer. They did once a month out-patient treatment. Some never gave up their job and keep driving and keep nice social life. I wish I do. However my treatment requires 5 days in-hospital treatment every 2 weeks and I am really a wack and I have no social life and I am always depressed. I am so afraid of driving since I am afraid of my chemo-brain which lacks some concentration. am not saying the breast cancer is easier but the quality of life

      3) Some people told me that we should go out and have lunch or tea. I appreciate it but it is very difficult. I am not confident of driving and I look so bad considered with when I am healthy so I really want to expose myself to my friends.... This is not feasible attitude.

      about 9 years ago
    • abrub's Avatar

      I wish they could refrain from the overblown optimism that they feel they must express (as noted in several responses above): "Don't worry, I KNOW you'll be fine. You have (or have to have) the right attitude. I know you'll make it."

      My response is "How do you know I'll be fine if my doctors don't? If they knew I'd be fine, I wouldn't be undergoing regular CT scans and other tests for the rest of my life."

      Second issue: "I understand how you feel." No you don't, unless you've had a cancer diagnosis, you do not know how I feel. You can have sympathy for me, care, and worry, but you do not know what it's like on the inside looking out.

      about 9 years ago
    • Donnaakins' Avatar

      Overblown optimisim is difficult! I am so tired of hearing how strong I am. The people making those comments weren't with me when I cried continuously for three days or the many, many days I couldn't get out of bed because of pain and depression.

      Another comment that is difficult for me to hear is "This is part of God's plan for you."

      about 9 years ago
    • Bashiemn's Avatar

      I wish they would understand that it's a lonely road.
      I spend most of my days at home since I"m going through Chemotherapy. Home, alone... Then in the evenings, if I am still home, alone, it's awful. Sometimes just having people nearby is helpful, even if we're not talking.

      Oh, and people who tell you stories of other people who died of cancer... that's not helpful.

      about 9 years ago
    • akristine's Avatar

      I am not my diagnosis. I would never introduce my friend as "X who just had a cyst removed from her foot" or "Y with arthritis" or "Z who used to have a problem with alcohol." That's why I attend a cancer support group with other members who understand.

      about 9 years ago
    • Donnaakins' Avatar

      Bashiemn, I could have written your post two months ago. The days alone contributed to depression that consumed me, swarmed every part of my being.

      I can offer you platitudes, but they are so empty to me now. Instead, I am sending you a mental hug from Alabama in hopes you get a physical, meaningful one to take its place very soon.

      Visit us. Don't take no for an answer. Don't worry about intruding. We just may need an intrusion.

      about 9 years ago
    • nancyjac's Avatar

      I wish people would understand that I am physically vulnerable and unpredictable while in cancer treatment. Please don't sneeze or cough on me because my WBC is shot and if I catch your simple cold, I'll end up in the hospital and it will interrupt my treatment for cancer. Please understand that when I forget what you just told me, I'm not demented or depressed or not paying attention....I'm on drugs that mess with my short term memory. Thank you for offering to fix my lunch, but what I really need is for you to scoop my cat boxes.

      about 9 years ago
    • kleslied's Avatar

      My mother had cancer and died in '89, now it's my turn. I don't feel anything right now maybe because it's too new, finishing the pre stuff up to start chemo next week. I guess the hardest thing is I joke about it, it's how I get through but it makes everyone else cry and then I feel worse. I have taken care of friends and family all my life and I feel like even this is not about me and I have to comfort everyone through my illness. I don't want to be a burden and taken care of but I wonder how much of my life I have to give...all of it?

      about 9 years ago
    • southladi01's Avatar

      That I am more than the cancer that I am diagnosed with. I am a very independent person and now I am having to asked for help. This bothers me because I feel that I am a burden to other people. I am grateful for the support I have from my family and friends, I just want them to understand that it is hard for me to ask for help. I am scared of what is to come in the future and I am not sure that anyone understands this, they all say everything is going to be alright. But , how do they know nobody does. WHat if I beat the cancer this time just for it to come back and I have to do this all again. What if we cant beat it this time. There are times I wish I could just sit down with someone that would listen and not tell me everything will be all right because we dont know.

      about 9 years ago
    • Christine7688's Avatar

      Everytime I tell someone I had breast cancer at 40 years old, their eyes always wander to my chest. I FREAKEN hate that. I guess it is people that don't understand what it feels like, but it is insulting to me.

      about 9 years ago
    • nantse1's Avatar

      Having just lost my husband suddenly at 55 to a heart attack in Sept. and being diagnosed in Jan. with breast cancer and with only one round behind me that has given me much pain; I want to talk about it. I don't know what my normal is. I haven't gotten used to what my life is like without a husband yet. When I'm saying how bad my day has been it isn't for sympathy. I just want to hear somebody say that really sucks! Loneliness is going to be the death of me.All of my emotions are finally catching up with me and depression is winning. Come visit me and make me laugh!! Please don't let me lose my sense of humor. It's all I've got left.

      about 9 years ago
    • arenee98's Avatar

      That just because I come into work or wherever looking fairly normal, I still am dealing with a huge disease and my thoughts and emotions are all over the place. I might "look good" but that's because I've spent time putting on a wig, putting on make up and having rested all day before I got there.

      about 9 years ago
    • steve70x7's Avatar

      I wish they would understand that I am "Living with cancer", not waiting to die. I want to make every day count and I want to help others who are Living with cancer.

      As a Christian and maybe especially as a Pastor, I am concerned when people in my church act like I am not showing much faith by admitting that I have cancer. They say some rather off the wall things, but I can understand how they are "uncomfortable", I guess I was that way before I was diagnosed too.

      It's kind of like the people that go to a funeral and say things like, "He never looked better." or "Well he is healed now." No he isn't, he's dead!

      To help my family and friends understand I have started a blog to share what I'm going through (that was before I found this site).
      www.faithfulinthemeantime.wordpress.com Now when they ask how I'm doing I tell them to read the blog if they want to be up to date. It also helps me collect my thoughts and feelings to write about them.

      I appreciate you and all of the folks that take time to share on this site and I look forward to getting to know many as we journey together!


      about 9 years ago
    • AbbysMom's Avatar

      All of what is said here sounds so familiar! People who feel they should tell you that their aunt had cancer and died from it and people who won't look you in the face when it's pretty obvious because you're wearing a scarf or hat and have no eyelashes or eye brows. All I wanted was to be treated like a human being or at least like before cancer. I loved the little girl who came up to me and asked why I didn't have any hair and looked me in the face. I had a smile on my face after that. How about the people in your life that disappear - like running for the hills! I know it's a kind of primal fear that makes people act like that. I'm going to make sure I treat other cancer folks like the humans they are - I hope I always have.

      about 9 years ago
    • kashcra's Avatar

      I wish people would understand how scary that diagnosis is. Your treatment may be successful, but it is always in the back of your mind. Your life will never be the same. Don't treat us like we're dying, or like it is nothing, but allow us to go thru stages of grief. Yoy wonder, why me? What could I have done differently to avoid this. Will my treatment be successful? Will I look and feel "normal" ever again? I have been lucky in the fact that my adult daughter has been there with me every step of the way. She has encouraged to keep going to chemo, when I wanted to stop. She tells me it doesn't bother her if I don't cover my bald head at home. I wish everyone who is going thru the stages of cancer has someone they can lean on. I am forever grateful for her. She was not happy with me when I made her go for a mammogram, she had a lump, but it turned out to be benign.
      What I am trying to say is let us have our down moments. Cheer us up when we need it. Give us a shoulder to cry on. Don't play it off as no big deal, because it is a very big deal to us!

      almost 9 years ago
    • SandiD's Avatar

      We are scared! We need you to listen & not forget about us. We probably won't reach out for help, so just do it! And please do not mimimalize our fears or experiences. Just care and let us know you are there. And when treatment ends, we are still going to worry sometimes. We are never really cured, so we need understanding fir a long time after.

      almost 9 years ago
    • Dani's Avatar

      I am just going through the testing now, and I just wish the people around me would understand what I am going through and just how scarey it is. I feel like everyone in my family feels, everything will always be okay, but I really need someone to understand that at this point I need to prepare myself for the worst and hope for the best..

      over 8 years ago
    • Effiemae's Avatar

      I have always felt very strongly that no one person can understand how another one is feeling until they have experienced the same thing or something very similar. The three words "You have cancer," have to be the worst three I have ever heard. Since there is no history of cancer on either side of my family for generations back, I was totally stonewalled. I wish people could understand the stages a cancer patient has to experience before he/she finally reaches acceptance, and I wish they could understand how terrifying it is to know that you have a disease that could take your life in a matter of months, in some cases. I also wish that more people could understand how vitally important support is, whether it be moral, financial or just friendship. We're not contagious, but I think some people think "if she can get it, so can I," and it scares them to death. I have found that people who I thought were my friends ran like the devil when they found out, and there were others who stepped forward and really surprised me. I think the most important thing I wish other people could understand is the fear, rather sheer terror, that goes along with the diagnosis.

      over 8 years ago
    • Effiemae's Avatar

      I don't think people understand that when you are diagnosed with cancer, you lose a part of yourself that you will never get back. I know I have. I have gone through so many stages that I'm still dizzy from it, but the things that affected me the most were short term memory loss and at times even the ability to function on a daily basis, just from anxiety. I have done things like throw my wallet in the trash, throw my jewelry in the trash, leave folded underwear in the refrigerator, and it seems when I leave the house it takes me three times longer to get everything together. At first I thought I was going crazy, but them I realized that my anxiety and preoccupation with the disease itself literally takes over your whole being. There are good days and there are bad teary days, but I have found the most important thing is to accept this illness as something I cannot control and try to be at peace with that. Maybe (and I really wouldn't wish this on my worst enemy) if everyone could experience just one day of hearing those three words, they might get a slight understanding of what it feels like.

      over 8 years ago
    • RnayRiv's Avatar

      Just because the doctor says he removed the cancer the fear is still there for awhile. I'm five months post op and I am still very scared. Everyone around me are like oh you are fine now and don't want to talk about it. Well I'm still dealing with it every day and still afraid!

      over 8 years ago
    • Naomi's Avatar

      I had a double mastectomy 11/2011 at that time I was employed as a Adon at a long term care facility in Melbourne Florida when my surgery was finished and I was able to return to work ..my job was already replaces the DON offered me a different position but the ADMINISTRATOR said I had to resign because the COMPANY DOES NOT hire anyone with a disability unless it is workers comp..this was in reaction to my return to work notice from my physion with no lifting, pushing or pulling over 10 pounds..the job I was offered was a desk job...now I can't afford life insurance and have to pay COBRA all because I have cancer..so anyone looking for a job as a person with a disability don't look at a facility on SARNO ROAD in Melbourne, Florida.....

      over 8 years ago
    • hegerock's Avatar

      That they would be more understanding and not shy away from this word!!!

      over 8 years ago
    • Blue's Avatar

      Sometimes I tire of repeating the same story over and over when friends call and want to know my status. It feels good just to have a normal conversation about the day's news, a good book or movie, anything other than cancer.

      over 8 years ago
    • TheEvilyn8's Avatar

      Noone will ever understand 100% what we are going through, even if and when we tell them. Its human nature to fear the unknown and I think some people wish they didn't know thus they will never HAVE to know. The best way I can describe telling people is there is now two types of people in this world, us and them. I pray for both. FIGHTS ON!

      over 8 years ago
    • Jennyjenny's Avatar

      That I wanted to keep things normal, especially for my kids, and not talk about it on front of them or use the c word if not needed unnecessarily. Many ms find it so scary that their instinct is to sit at bus's tops and gossip about bc stages of their friends, all while children play around them.

      over 8 years ago
    • mgm48's Avatar

      I love this question and the answers are great. I had PC, then I didn't and now I do. Life has been a roller coaster. Now I'm in a "there's no cure" status. I will live with this disease for the rest of my life and I will always be in treatment. For my part I have gone to preparing a semiannual update letter to my friends and clients. It helps limit the "how are you?" questions and discussions that some noted can become tiresome.
      There are a couple things I'd like to highlight
      1. They never seem to appreciate the strain my disease has on the love of my life (my wife). She too lives with the disease every day. And bless her she puts up with me.
      2. The financial strain on a family dealing with treatment, prescriptions, travel, etc just can not be understood unless you're the one involved. Since diagnosis 8 years ago my insurance premium has had a 30% per year underwriting increase (that means it more than doubles every 3 years). I wasn't even in any treatment for 6 of those years but the insurance company had me classified as a cancer patient...

      I truly appreciate those who are personally connected and offer emotional support. It's great to have friends. And we talk about golf, cycling, family and normal stuff. AND when I say I'm fine they say good, not "really?".

      Keep it positive and smile:)

      over 8 years ago
    • justegan's Avatar

      I really wish that people can understand that no matter who they are (family, significant other, friend, etc.) they will never truly understand this journey. I love my family/friends/boyfriend but they always try to say that "we" are on this journey together. I try to make them understand that I view it as two different planes on a graph...they are on their own journey with me, and I am on my own journey all on my own (and they are on a journey all of their own in dealing with my diagnosis) . I am the one who has to physically deal with all of this, so in essence my journey is YES different than theirs. It does not mean I don't appreciate the support or the love but being aware of the distinction is important.

      over 8 years ago
    • shells12's Avatar

      My husband and I searched for an honest book that outlined what the journey ahead of us may look like. We never found one so we wrote it ourselves! It is our wish that everyone searching for honest answers about all things breast cancer will find what they are looking for in our book. Hopefully it will make their journey a little easier.
      Check out our Facebook page:

      over 8 years ago
    • cinnamonsmile's Avatar

      I would wish that people would understand that once treatments are over, cancer still has TREMENDOUSLY chat nged a life. Just because the cancer is "gone" or for people living with Stage 4, doesn't mean everything goes back to normal. In my opinion, you are never the same and physical some side effects last for years and years.

      over 8 years ago
    • BB23's Avatar

      I wish they would understand that once chemo is over, the battle isn't over. For the rest of your life, you have to live with the changes that cancer brought to you. Good & bad. But cancer does not define you, you are still you. I have to live with my scars, my chemo induced injuries, my fears, etc. But I also want to be included in all the "normal" things & conversations from before the cancer.

      over 8 years ago
    • JenB's Avatar

      That just because "you're ok" doesn't mean the whole experience is over. I went through treatment and I AM ok, but there's a little voice inside my head always saying "What if?" Every little pain, bump, headache... my husband now believes I'm a hypochondriac!!!!

      over 8 years ago
    • Queen_Tatiana's Avatar

      As the spouse, I wish family/people would understand that just because my husband is no longer receiving radiation and is on a 2 week leave from chemo, it doesn not mean that he is now fine/cured. It's a two week break in the middle of a six month run of chemo, and he only has the break because he's losing weight too rapidly and very anemic. It's a necessary break--He's not cured of the cancer.

      over 8 years ago
    • vizslagirl's Avatar

      like some other folks said, i wouldn't wish cancer on my worst enemy, but no one can understand how we feel as survivors without walking in similar shoes. i wish people would understand that you can have as POSITIVE and DETERMINED an outlook as possible, but i watched a friend die from cancer last year and SHE was determined to beat it....but there comes a time when your Fate is no longer in your own hands. you can't will this disease away, and if it comes back, like mine did, the emotional turmoil of trying to wrap my head around the fact that i might NOT live to be 100 even though i want to...wow, lately it is almost more than i can bear. my husband is awesome and totally supports me, but this disease has affected him as well---in fact, probably MORE in some ways. and i hate it for him that people always ask me how I'M doing---no one asks my husband how he's holding up.
      People need to realize that our CAREGIVERS also need as much love and support as WE do---in fact, sometimes more, because they have to watch us suffer and can't do anything to "fix" our cancer.
      i just wish people could understand this roller coaster, but they can't unless they have it and that is not a lesson i want people to have to learn. getting cancer SUCKS.

      over 8 years ago
    • campergirl's Avatar

      It is the most challanging brain activity ever. You learn to compartmentalize; think about your work and not focus on self or the person barfing into a basin in a chair next to you. Use music to distract your brain and activate your prayer warriors at church and within your family.

      over 8 years ago
    • Onoi11's Avatar

      I worry about the emotional toll my cancer diagnosis has on my family as they try to remain strong for my sake. I think it's OK for family members to reveal their fear and vulnerabilities, to cut through their own emotions to the core. In that way perhaps cancer has a beneficial side to it in that it opens us to the raw honesty of the situation.

      over 8 years ago
    • gmann's Avatar

      They dont understand how you feel because they havent been their. Its easy tosay but they have no ideal what its like to be toldthey have cancer.

      over 8 years ago
    • jvbaseballmom2's Avatar

      Whenever I share with someone that I had breast cancer and chemo, they usually ask if the chemo was the worst part of the experience. They are usually surprised to find out that the worst part is the fear of waiting for your test results, what a nervious wreck I become before each oncologist appointment and medical test that I need to take, and how I worry about every ache and pain that I have - is it a reoccurence? After 7 years, the worry hasn't gone away.

      over 8 years ago
    • ruthieq's Avatar

      I would like people not to tell someone "Cancer doesn't hurt so it isn't that". There are myriad types of cancer and yes it does hurt. Physically hurts! I don't know how many times I had been told that statement, and each time I corrected them. Also if people really wanted to help, just come over and help out. Do some laundry for your friend or the dishes or help by straightening up the place. Or take the kids to the movies while the patient sits home and relaxes... Just say when you go to your friend's house, "I've come to help out a bit." and patients, LET THEM DO IT! This time is for you now, not for taking care of anyone else, YOU. Its not selfish its survival! :)

      over 8 years ago
    • liznparadise's Avatar

      From the time I was diagnosed I just wanted everything to be as normal as possible. I was open about my diagnosis and optimistic about my outcome. What I didn't appreciate we're people who told me I shouldn't do conventional treatment and gave me all the wholistic remedies. Also, when someone is Ill whether it is cancer or not, bring food. Research what is right for their condition and just deliver. If they can't use it right away they can freeze it. My husband works out of town and so I was pretty much alone during my treatments. I was told by friends to call when I wanted food delivered or that they didn't know what I could eat. Just ask and do. Most people going through this will not ask.

      over 8 years ago
    • Buttercup's Avatar

      There are times that I need to talk to someone about the cancer and how I am feeling. If I bring it up its okay but don't make every conversation we have about my cancer. Believe me, I know its there and what I am facing. I don't want to be reminded all the time.

      over 8 years ago
    • Bubbles' Avatar

      Stop saying "the good news is....., (they caught it early),(its not in the lymph nodes),(you went for your mammogram that day), (you don't have to have chemo) and so on. Sorry, the only good news I can see is that you don't have cancer. I have a right to feel bad about the bad news...just give me time to get my mind around it....like always I'll figure out some good news but right now.....I have cancer and there is nothing good about it.

      over 8 years ago
    • cindycrosby2's Avatar

      That cancer is not contagious! I understand people don't always know what to say, and that is okay with me. Just knowing they were praying for me and sending cards was enough. After the diagnosis, even though i was surrounded by people, i still felt lonely at times. Everyone deals with it differently...For me, i researched a lot wanting to know every detail about infiltrating ductal carcinoma stage 1 HER2+. For others like a friend of mine, she just wanted to have surgery, and put it behind her. She did not care about details, and that is perfectly fine!

      over 8 years ago
    • SueRae1's Avatar

      I sometimes really need to talk about what I am going through. I try not to over burden one person and I am seeing a therapist. But I find talking and writing very therapeutic. Don't tell me how I should feel. Offer specific help (i.e - how about I take you to the infusion center, let's see if we can work out a date, I am going to the store, is there anything I can pick up for your, etc). Ask about the caregiver(s), they are as stressed out as we are, offer them help too.

      over 8 years ago
    • dee_mia24's Avatar

      i wish people would have stop teeling me that they understood how i felt and to not give up. No you don't know how i feel, you don't know that i wanted to throw up everytime i smelled food or drank something and made me wan to throw up. they don't don't know what was borthering me that day. I just wished that they ask me how i felt today instead of saying "i know how you feel".

      over 8 years ago
    • pat7-21-2010's Avatar

      Please don't say, "Oh, I'm so sorry." I'm not dead yet!
      Instead say, "I'm sorry you are going through this."

      over 8 years ago
    • janstar47's Avatar

      It is facing what you (perhaps) ALWAYS hoped and prayed you'd NEVER FACE. My Mother had cancer in her 7th decade of life. She took such good care of herself. I'm in my 6th decade of life. I don't know if it's the same type breast cancer, as her records are gone. She was given a complete mastectomy immediately. Mine is a tumor attached to the muscle wall. So, Chemo first to shrink it. Then surgery. You suddenly have the determination to FIGHT IT and so I am and I WILL WIN this fight. Mid 60's and a grandmother to 5 little darlings! I have plenty of reason to KICK IT. You are given a diagnosis. It will NOT be your long range future. For now I have cancer and it's being beat up with chemo and more prayers than I thought possible. Yeah, Cancer? You're GOING DOWN.

      over 8 years ago
    • moonmaiden's Avatar

      My friends have been awesomely wonderful to me, and I really appreciate it. Maybe they know that I'm terrified. They have been helping to keep me out in the world, when I would rather be cooped up, and are patient when I get weepy and moody. You know when you've got a great girlfriend when she's willing to come over on short notice and shave off what's left of your hair for you:) There has been a great outpouring of love from them, and they keep telling me to let them do stuff for me. But I'm shy to ask to take them up on it. It may require showing up on my doorstep and kidnapping me for lunch or something, because I don't know how to reach out in this situation. I'm lonely, I'm depressed, and spending way too much time in bed, but even though I have had so many offers of hugs and phone numbers and help with whatever I may need (even requests for dates even after I tell him I have breast cancer!?), It's just so hard for me to ask for help with so many things that I used to be able to take for granted getting up and doing. Looking over some of the answers, I would like to comment on this: Your friends are going to bring up people they know who have had a cancer and come through it. They will bring total strangers around to offer you encouragement because they are "survivors". It can seem like they are trying to compare what you are going through with what they know of others who have had it. I like to think that the reason they are doing so is because they don't really know what it's like, and they want to find a point where they can connect with you better. They want you to have help and encouragement that they feel helpless to provide to you, so they bring around someone else to provide something they feel they can't provide themselves. One thing that I would like others to understand about it is that my life has become completely abnormal, and I would like anything that would help me feel normal again. Talk about the weather, or go out for lunch, or take a walk and enjoy nature or something. I might be having a hard time finding something good to talk about these days, so you distract me talking about how your kids are doing, or what nice thing your husband did for you, or your recent trip to Hawaii or whatever, I am so very happy for you that you're blessed in such ways, and need to look beyond my current issues to find something to shoot for. I truly appreciate that they care and want to know that I'm doing ok, and want to do whatever they can so that I will do ok, but after a few questions about it, what I really want is to feel more normal.
      Apart from that, I chafe at the term "survivor". In my mind a survivor is someone who is castaway on an island, or adrift on a raft, or wandering around after a tsunami. In my mind a survivor is someone who is awaiting rescue. I'd really prefer another term. Patient? Well, at the moment I have a trial that is either testing or cultivating patience. Warrior Goddess, perhaps. I don't want to think of myself in terms of some kind of refugee, and I am struggling to try and keep the cancer from taking over my identity. I have it, but I don't want to be it, it has been taking over my life to an awful extent. I don't want to survive, I want to live my life. Whatever my friends can do to help me keep doing that is good. I have been developing a network of boobie buddies around me, sometimes a friend will confide that she found a lump, and that she's scared to find out about it. I have successfully managed to get one to be biopsied a year after they found a mass on her mammo, and she is going to be ok. Another one I haven't heard back from, but hopefully she will get a mammo and biopsy, 85% of biopsies come back negative, and I tried to make sure that even though it didn't work out that way for me, the odds are well in her favor, and she should be checked out. When people hear about it, sometimes it gives you unexpected responsibilities as a leader and role model for others who aren't doing something they should be doing so they can get what they need. Don't be afraid to ask me questions, and especially don't be afraid to talk to me if you find a lump, and you're scared of what it will mean to you. I'm doing my best to try and be a good role model for you, you're asking because I am going there ahead of you, and that's ok. Others who have come through it, strangers who have heard about me have shown up to offer encouragement and tell me how they have come through it and I can too, even though it may not seem that way some days. They are taking a leadership position as people who have come through it ahead of you so as to give back.
      I see that Ms Re posted this question a year ago, but don't see any particular thoughts as to what she would like listed at the top of this page. Now she has had a year to read and digest and live an additional year through it, what does Ms Re wish others would understand about it?

      over 8 years ago
    • ebrazil63's Avatar

      That even after recovering from mastectomy surgery and not having to have chemo or radiation (4 months ago) you still don't feel "normal" and back to yourself... I'm still very fatigued, tired, and having a lot of emotional difficulty.

      over 8 years ago
    • ablomquist's Avatar

      I think I would most like people to know that even though I have a very strong personality, I have also have a side that can be weak. I am the one that takes care of everything at home and for my very large extended family. I am not in control of cancer... it is scary. It will not all be Ok. I will be sick, bald, weak, tired and need help. But, it will be difficult to ask.

      over 8 years ago
    • mcyars' Avatar

      I wished that my family could understand that because I have cancer, I am not the same anymore. Everyone just thought I could just carry on like normal; and I do understand that was out of fear. What I wanted was for someone to see that I would never be the same. After sometime that did happen and my family understoodd that I am different now. Physically, emotionally and spiritually; and it's all for the better.

      over 8 years ago
    • barbershopgirl's Avatar

      My family thinks I should be able to carry on as normal. I get tired easier than I used to. I need help way more often. They are used to seeing me in and out of the hospital because I have asthma and have had a hysterectemy, shoulder surgery, etc etc...Not sure they understand how much it takes out of you. I was going through a divorce when I was first diagnosed. My children were awarded to their father and I lost my job, I was not making my rent, facing medical with my insurance about to be taken away from me when the divorce was final. All people were concerned about was my hair was going to fall out? I just had a bone biopsy people keep saying that it's going to come back saying that it's nothing. Not to worry about it until the diagnosis comes back. But, I've already been through this before and been told it was cancer. I was alone and had nobody to tell. I just don't want to hear it alone this time. I want someone to be there with me. It is a very real chance it's gotten in my bone or else why run the test? I won't know until after Christmas the results and it's eating me up inside...the not knowing. What's next is the true question.

      over 8 years ago
    • carter4's Avatar

      If I hear one more time "well you look good" - (compared to what?)

      over 8 years ago
    • KimG's Avatar

      That it never goes away. Even when treatment is over or almost over on a bad day you sometimes just wait for it to happen again. It is something that is never forgotten or far from your mind. You can move on doing daily things but somehow it's always there. I don't think I'm quite the same person post cancer. I've had to file bankruptcy, I don't laugh as much and just kinda move through the day with not much emotion either way. I am also unemployed so that doesn't help either so when I get a job AGAIN, that will help. I'm also trying to get into a clinical trial and my faith helps immensly-God is great God is good! kimg09

      over 8 years ago
    • Lroethler's Avatar

      I wish people could understand that even though we may look fine, we are often not and that no how hard they try, they have no clue what we are going through. It's not just the pain, the fatigue, and all the other side effects; it's the unrelenting fear that haunts us no matter how positive we are or try to be.

      over 8 years ago
    • Beverly60's Avatar

      I would really like is for people to understand sometimes you just need to express a thought without a pep talk. No, I don't want to wallow in self-pity, but could you sometimes just listen and help ME validate my feelings? It's not normal to be upbeat and positive 24/7 when you have lost your body hair and you feel you look like Benjamin Buttons. Sometimes I just need to cry.

      over 8 years ago
    • tooling66's Avatar

      That denial of a loved ones dx is just like not addressing the issues the person your caring for is concerned about.

      over 8 years ago
    • Beverly60's Avatar

      My thoughts differ from time to time. Sometimes I would like to be held. I guess that's most of the time. And then there are other times I am so angry and working my way through that, I prefer to just be alone.
      I guess I can't fault anyone for not knowing what to say when I don't even know what to feel.

      over 8 years ago
    • StevenAronoff's Avatar

      In my case, I want my friends to understand that they could do for me is to come and visit, talk and touch. You can't tell I have cancer by looking at me. My mobility is much reduced, so friends coming to visit me is much easier than my going to see them.

      over 8 years ago
    • gsbasset's Avatar

      People who are getting treatment and are sick will push you away when they need you the most. Go visit, send cards, give a quick call or email or text. Talk about LIFE not the illness. Engage!

      almost 8 years ago
    • nocancer2013's Avatar

      People have to make their own choice about having cancer treatments or not having treatments.
      Please be RESPECTFUL OF THEIR DECISION~(even if you don't agree)
      My father chose to have treatments, my uncle at his ripe old age choose not to. I can respect both of them and their decisions. I choose treatments, and doing awesome after 1 1/2 years!

      almost 8 years ago
    • chloe0044's Avatar

      That you are emotionally and physically different when going through and after treatment. Physically, your energy may not return fully. Emotionally, you have gone through a lot, and are tougher afterwards, not initially. Also, you may gain or lose weight, or be out of shape. There is also the thought that cancer may return.

      almost 8 years ago
    • Wendylee's Avatar

      That it's scary and just because you are done with treatment doesn't mean very much. I can't tell you how many people have said "you must be so relieved to be done" after my last round of chemo. No, I didn't feel relieved. I just felt sort of lost and scared, because now its all about wait and see. Did it work? Will it come back? Will I get to watch my children grow up? Those questions don't go away when treatment ends.

      almost 8 years ago
    • talktoomuch's Avatar

      I think everyone needs to know how personal this diagnosis is. It is so overwhelming at first and people are afraid of the word cancer. They either think your going to die or oh well that's nothing. But in my experience that was coming from men not women. I think people are afraid of me now. I guess they think it is contagious or something. No I know what it really is, that there afraid it might happen to them. Or its ignorant on there part. If it isn't happening to you or someone you care about you really don't want to hear about it. Like someone said get the tests done they could save your life

      almost 8 years ago
    • marybeth's Avatar

      That it can cause you to think in a single minded kind of way, that is, it is always there in your mind and you are not being crazy when you wbc is almost zero, you have good cause to be fearful of germs, bacteria. It makes you think differently for a reason - to save your own life, but I'm sure that can be tiresome for others to here.

      almost 8 years ago
    • maggiebarnett's Avatar

      The emotional ride that we go through. It is very nice to have really good emotional support but we do need time by ourselves to process all of the decisions, changes in body image, financial changes to the home, loss of employment, sometimes loss of friends, and all the information that is thrown at us all at once. We need a little alone time, just to come to peace with this piece of evil that has been thrown at us. We have the right to be afraid of all the treatments and how they will affect our bodies, our strength and our ability to be mom, wife, daughter sister, employee, friend, cook, cleaner, shopper, mender, kissing away the booboo's on a three year old. I am not saying that all of these things will go away from your life for awhile, but some or all will and for most strong women, it is like tearing out our heart. You will make it back, during treatment take the time you need and do not be afraid to say to others....I need a minute, go sit outside, watch the birds, sit by the fire and watch the flames, pray,....do what You need to do. If others get their feelings hurt, then they get their feelings hurt. At this time of your life, it really is ok to be a little selfish.

      almost 8 years ago
    • baridirects' Avatar

      I'd like everyone to understand that being a cancer warrior causes you to re-evaluate your life in many ways, and that my priorities and my attitudes about certain things have changed in light of what I'm experiencing. In many ways, that's a positive thing, but decisions that the Christine before BC made are not necessarily going to be the ones I'm going to make now, whether or not that's convenient or comfortable for you.

      almost 8 years ago
    • PeachesTQ's Avatar

      Please understand that when you say, "call me if you need anything".... I'm not gonna call.

      over 7 years ago
    • DottyR's Avatar

      Not to pity me! I would tell people that there were a whole lot of other people going through worse experiences with chemo and radiation. I would think of the elderly and children going through it, and know it had to be much harder for them. So I didn't want any pity.

      over 6 years ago
    • DottyR's Avatar

      Oh, I also want to add, that another woman who had chemo only gave me very negative information about it. I didn't want to hear that just because she had a hard time with it, that I would. And I didn't have as hard of a time as she did. That's not something to tell someone who has just been diagnosed with cancer and will have to have chemo.

      over 6 years ago

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