Does anyone else have people (family/friends) who you don’t see everyday but when you do see them never ask how are you feeling or even pretend to care that you have cancer? I was visiting family today and people asked my mother how she was feeling because she had a blood clot found last year and then they asked a cousin how he was feeling because he has AFib, but nothing to me. I just sat there in shock. Eventually I had enough of everyone talking about other things and I said “Does anyone want to know how I feel? I do have cancer”, which of course made my mother yell at me and made one of my cousins laugh. Then they changed the subject. And still didn’t ask. I was beyond hurt. It was almost surreal, as if I wasn’t even a person who mattered. Just because I don’t look sick doesn’t mean the cancer is gone. Hurt doesn’t even describe how I felt.
Feeling totally unreal: Does anyone... - SHARE Metastatic ...
Feeling totally unreal
I do know what you mean Lisa! I'm very, very close to my niece and she'll never ask me how I am. I think with her it's fear about my stage 4. so because she doesn't ask, I tell her how I am feeling, what my test results were , etc and she hangs on every word, but she will not ask further questions. I also have good friends who apparently forgot I have stage 4 cancer and never ask. I think because I'm on a "pill" and not intravenous chemo, they feel you should be ok. Why ask an ok person if they're ok, right? Then there's those that treat me as if I'm dying on the spot there and totally make me feel uncomfortable with their compassion 
It may be my own fault too as I see my condition as a chronic disease ...
I think it's people's fear, so don't let it bother you too much if you can! I'm pretty sure they love you and are actually very afraid for you.
Anja
That is even how my cancer center refers to it as a chronic disease that I will have to be treated for for the rest of my life. Even on my SSDI papers, they do not use the word terminal.
....I never thought I would be very happy with a chronic disease
When I got my award letter in August of 2018, it stated that I would not be reviewed for 7 years. (I think they think I won't be around that long anyway. - I am 59) But I know one woman from another forum board who was in her late 30s. She had been on SSDI and had been NED for like the past three years. All of a sudden, she gets a letter from SSDI that they will be cutting off her SSDI benefits because they felt she could work again. She freaked out as she had been on SSDI for about five years. The younger you are, the more likely they are to review you. In the end, they did stop the SSDI, but she wrote to her congress man from her State and other govt. officials and eventually got back on.
Wow! That's amazing. Did they contact her oncologist, I wonder....But I'm glad she's back on it.
I just knew that SSDI was able to check (they do check on younger people more frequently even with breast cancer) and she had been NED for over three years so basically she was going twice a year to cancer center to be checked. The award letter will state how many years they will review your case again.
That's truth my letter said they will review in 3 years bc I am 42. If i am NED for 3 years, but my doctor told me that even thought my cancer in my spine have shrunk I will have cancer for ever. So how they can decide that I will be NED.
We are talking about Social Security. If you are not stage iv, or have pancreatic cancer or ALS, 75% of people get denied. Do you expect common sense from them? A friend's husband fell off a ladder at his job. He severely injured his back to the extent that they had to put metal rods and pins in his back. He was in his late 40s. He was always a blue collar worker. He applied for SSDI and was denied. He had no college education so this was the only type of job he knew. His wife had to work two jobs. They hired a lawyer and in NY it can take a year or a bit more to even get a hearing. The lawyer screwed up or something and he was denied at the hearing. Now, he had to hire a different lawyer to do his appeal. Thank God this time there was Judge with common sense. He was furious that it was almost three years now from the date of the accident and once he seen his medical records and x-rays of the metal rods and pins in his back, he was furious that he had been denied from the beginning. He got back pay of a little under $100,000. They know stage iv is forever but they look and I guess if they feel you are NED for 3 years or maybe 2, then a person can work at some job. They did not even give her much notice. It was like two months before they were going to stop her SSDI that she got the letter that they were ending it. Like I said, she wrote to her state's officials but it took almost 3 to 4 months so for that time she was not getting SSDI. They put her back on but they did not give her the months they did not pay her but I think she was just so relieved to be back on that she didn't make a stink about it. I know people with stage iv older than me who still work full time as teachers and nurses and I think kudos to them. They request and look at your medical records and how many times you have had to go for treatment. Its the SSDI....you can't expect them to make any common sense. I also think that if you are NED for 3 or 4 years and they cut you off and the cancer comes back full force again when you have to go for treatment every month, it's much easier to get back on it again.
Anna is absolutely right. Some people don’t ask out of their own fear of the disease; some out of disbelief bc we may look good at the present moment; some bc they don’t want to pry or upset. Just as we must handle this journey our own way our family and acquaintances also need that leeway.
Example: My MIL had BC in 1979. She’s 91 now and no reoccurrence. She hardly believes I’ve had 3 different types of BCs and am now metastatic for 2 yrs. She doesn’t call and when my hubby (her son) calls her she doesn’t inquire. She doesn’t WANT to know.
On the other hand, our son’s best bud from high school checks in on me at least monthly. He’s 49 yrs old with his own wife and kids and job...
Just accept the support offered when it is, and wave off thoughts that others are not concerned. They may have issues and fears of their own to deal with. It takes all kinds! k
I'm sorry to hear that your mother-in-law does not want to know how you are getting along. You would think she would, especially as she has had breast cancer too. Maybe it brings back bad memories for her. I saw my mother-in-law recently and she never once asked me how I was doing either. I didn't really expect her to. She is elderly and concerned more with her own frail health, which I can understand.
I agree with what you said about accepting support. Sometimes it comes from where you least expect it to!
Sophie
Wow! How insensitive! My family and friends probably ask too much about how I am doing with my illness. I dont have much family close, but they call me every 2 weeks to check on me and have friends they asked me every week. They maybe act like that bc you decide not have treatment. Are they agreed when you took that decision? That's personally decision but family can get upset for things like that. I am sorry that you have to deal with situations like that. They should be more loving and care for every one. However, that happened to me with my former job employees or coworkers. They didn't send me a get well card.
See how people can be different. You were upset bc your coworkers did not send you a get well card. I assume they would have figured it is stage iv and since it is for life and will not go away that a get well card would be inappropriate. I had a friend that I had not heard from for a long time but that I know she is aware I have stage iv cancer. She did not ask about it (we were close but not have been for years so rarely interact) and she just asked me something about someone we know and then put Hope all is well. I was a bit offended bc she never once asked me about my stage iv and to put I hope all is well well she knows I have stage iv seemed a bit off to me. I am at the point where I do not want people asking anymore. If things get worse, I will let certain people know but otherwise I do not want people to ask. To me there are alot worse conditions than breast cancer especially with children. I think they thought a get well card would be inappropriate bc you don't get well from stage iv you have it for life. Maybe a thinking of you card. But what one person gets offended by, another does not and vice versa.
I think different than you. They did send a get well card for another person with cancer like me. And I rcvd a bunch of cards from friends and family, so it doesn't matter if i will sick for rest of my life. I believe its just show that you care for someone.
Well that was nice of them that did send cards. I have no family and no friends sent cards and I don't think I would have liked getting a get well card after being diagnosed with stage iv but everybody is different. Since I have no family, live alone, don't drive and none of my friends live where I live anymore, I have to go to all appts., by myself, had a lung biopsy, got the news by myself so my skin is pretty thick by now. They will ask like tomorrow I get my scan results but the way I feel now, life is too short to spend it being upset. Cancer has taken enough of my life so far and now on Medicare where they expect me to pay a few thousand and working through with Medicare and Medicaid has been a horror. So I don't give cancer any extra of my life than I absolutely have to. My friends call or will drive in and take me to dinner so I am happy with that. Plus, my friends have their own issues. One has a father with dementia that lives alone, another one of my friend's husband just lost his job so to them that is what is important right now. Yeah, I don't get upset easily anymore. Just a waste of my time. We are all different. I was not judging you just thought maybe that was why they did not send you a get well card bc they know it's for life.
Praying for great scan report for you
Yeah, Ibrance was stopped after 3 cycles so far I prefer the Verzenio (and even its side effects). I was not even upset when they told me they found another cancer tumor after my surgery recovery. I was nervous once my onco said the 2nd cancer tumor could be a different kind of cancer. I said worse case scenario...she said it could be triple negative and then would have to have chemo and radiation and I already knew that I would not be doing that. If it was triple negative, I was just going to stop treatment. I will NEVER get chemo or radiation. Thanks for the good wishes. It goes by so quick. I felt like I just had my injections. I'm expecting its going to be the same so not nervous. Debating whether I want to do the bus and train there or pay $20 for car service (I miss the free medicaid car service and hope to get it back within the next month). I get nervous on this Verzenio bc diarrhea is a major side effect. Took two Imodium AD because there is nothing worse than being a distance from my apt. and feel that I will have an accident. Odd...now I start seeing people I remember from other visits. Last time was difficult. There was this poor woman in her 40s, I guess with her aide. She must have had cerebral palsy. She was in a wheel chair and could not move and I think she had some learning disability. When her aide had to bring her into the room for them to take her blood, she started screaming. It was very upsetting to hear and I thought God, what some people have to go through as if this poor woman did not have enough so it kind of made me thankful that this is all I had to deal with.
Kearnan
It is your decision which treatments to pursue. I respect that. Just want to add I honestly think the Abraxane IV chemo extended my life by a few years and it wasn’t bad. I would definitely do it again.
You believe that when I went yesterday, she forgot she ordered the CT scan for me (she is forgetful...this not the first time and always uses the same excuse, staffing issues. So she did not have the information from the CT scan. She told me if you want to wait around an hour and a half, I can get them for you. (She lies, I know this...she forgets things..I think she has too many patients). I said No, I do not want to sit here for another hour and a half. I have already been here for two and a half hours. I said listen, look at the scan. If it has something bad, call me at home and if not, I will see you next appt. So I have no idea what the CT scan showed but like I said, I don't really worry about scans or anything like that. I was just annoyed that she insisted (bc I did not want to have one until I can see if I am getting Medicaid as my secondary insurance bc I did not know if I would have to pay a deductible with Medicare (still figuring out Medicare) and she insisted. So I have it on Thursday (she is off on Fridays) and Monday she does not have it. I know its bc she forgot to tell them to have it ready by Monday. I know her game already. Just a bit annoyed but like I said, if its bad she will call me in, and if it is not then I will see her next month.
Geeze. I certainly wouldn’t have a lot of confidence in her. Fingers crossed she doesn’t call because your scans are good, not that she forgot. Again.
That's something I deal with in my family. My sister rarely calls and rarely asks about my health. She has not gone out of her way to visit or spend time with me, even when I asked. We were never very close, but I like to think I would have done better if the roles were reversed. I think some of it is what I'll call neglect. My brother is even more remote, but that's his role in the sibling triangle. I have a therapist friend who will call me when she is in crisis and talk for 3 hours, who doesn't often ask how I am. Once she thought her nephew might have cancer, and had a lengthy, panicked conversation with me about her fears about what would happen to him. Does she not understand that THAT is a very very hard conversation for me? So yes, I think sometimes it is a lack of empathy or just not wanting to get involved. Sometimes it might be that people don't want to upset you, especially when it's a gathering and not a one-to-one. I do have friends who ask all the time, every time we talk, how it is going. Those are the people I consider true friends. It is very hurtful when people whom you thought had your back, back away and/or act like everything is just fine. I think because you look fine, take a pill and have your hair that some people can ignore the reality of what we cope with. If there is someone in your family with whom you have a good relationship and are hurt by their lack of obvious concern, talk to them. Maybe it will get things out in the open and free that person up to deal with your cancer. I love how you responded to your family. Good for you.
I think this is one of those situations where some people get hurt if somebody doesn't ask all the time how they are doing while others get annoyed by people that constantly ask. I went to dinner with a friend and had no inkling to discuss my cancer but then she asked if I would mind if she asked some questions. Didn't offend me. She was nervous about somebody in her family that was waiting on results so wanted to know how it went for me. It was not a hard conversation for me. I knew nothing really about breast cancer until I was diagnosed with it. I am at the point now where I do not want it to be a topic of conversation when I go out with a friend I have not seen all the time. I do not want it to be all about me. I ask them what is going on in their lives and such. It makes me feel normal and quite frankly unless something really bad comes up (I go on Monday to get my results from ct scan on Thursday) there is nothing to report. I am still the same, on the same meds, going to cancer center once a month. I have no family so its just my friends and rarely, if ever, does my cancer come up anymore and that is what I like.
There are a lot of ways people prefer to handle this, and there all all kinds of reasons people react the way they do. I’m pretty hurt by my sister’s seeming lack of concern And I feel my friend the therapist should have some insight into how much cancer talk I can take. We used to be pretty good friends. I am almost at the point where I accept that they don’t have more to give. I’d rather have people ask me how I’m doing than not, though I certainly don’t want my cancer to be the sun in the universe. Spend enough time with it. I do not like when people tilt their heads and give me the “corpse” look and ask how I’m doing as if the hands of the grim reaper are pulling me into the ground! All to say I think I understand Lisa’s hurt feelings. Everyone else’s health issues were touched on but hers. I also see your point. We have to go with our gut and work it out
I get that people react differently. The way I look at things now, after my diagnosis, is that I do not want to waste time feeling sorry for myself or angry at people or upset about the little things in life. Each day is another start. I am so much more laid back now after the diagnosis than before. Believe me I worked in downtown NY for most of my life as a legal secretary/paralegal for those monster firms. Before the diagnosis, God forbid you should bump into me on the train or walk into me when looking at your cell phone, I would tear a person apart. That all fell away when I was diagnosed. To me now it is about what is important in life and the only person that can make me sad or unhappy is me so the little things don't matter much anymore to me like they used to so that even in dark times, you can find the good in it. Plus, for me, nothing has changed. I still have stage iv, I just am on different meds so its not like anything drastic is changing. A new cancer tumor grew in my already cancerous breast when I was off the Ibrance for three months bc of surgery. I had my first CT scan since they found it on Thursday and tomorrow I find out the results. I just don't even stress about it. Either it is going to be nothing has changed OR it is going to be it changed or it got bigger and I just go on to a new kind of treatment. So not even worried about getting the results tomorrow. I can't change what it will be so I will sleep fine tonight and even if given the news the new cancer tumor has gotten bigger, it is what it is. My new motto. I only told two friends about my scan bc I don't think it's that big a deal and was surprised when one emailed me on Thursday wishing me good luck bc I mentioned it three weeks earlier.
wow Nancy, talk about insensitive - your therapist friend needs her own therapist I think. I like to think I'd have told her to do one, but I know I wouldn't have. I'd have probably done the same as you and let her talk about it, despite my own fears. It's interesting that a few people have mentioned the oral chemo - I've had people say to me "oh is that all you have to do" . I genuinely don't think people mean it in a bad way, they just see it as not as invasive as IV chemo, and to be fair, they're probably right, but it's still a bugger when you suffer the side effects. x
I’m not looking for a continuous pity party. Just a check in once in a while. I don’t share anything with my sister or my therapist friend anymore.
I think because most of us with Stage 4 metastatic pretty much look ok on the outside maybe a little thinning hair and some weight loss but are still able to function almost normally. No one wants to ask about Cancer almost as tho they might catch it just by asking. And yes I know just how you feel.
Well, I certainly did not get the effect of weight loss for sure. First I was on Ibrance that knocked me out so I spent most time in my apt. or in bed. Then I had to have surgery on my inner thigh and was in so much pain, I literally could not walk for like three months. When I was first diagnosed with stage iv, I asked the onco will I lose alot of weight. She said no, you may gain on these meds. I was like damn...I was trying to find one silver lining in all this.
Hi Lisa,
I can understand how you feel. It sounds like your family feel awkward asking about your health, as they changed the subject when you brought it up. Some people just don't seem to know what to say, so they say nothing at all, which can come across as cold and callous.
I think family and friends can take a cue with how we respond and handle things. If we want to talk about the disease then they should be willing to chat and offer support. But I know it is beyond some people to do that. I seek out those who really care and lean on them for support.
While I was visiting my in-laws recently hardly anyone mentioned my health, but they know that I have cancer. I often found myself supporting others when they mentioned their bad back, acid reflux, and other ailments. One of my sisters-in-law also has breast cancer, so we chatted about that and another came over to visit me, as my husband had revealed my disease is metastatic (something I have not even told my own side of the family). She wanted to hear it from me, and so I went into minute detail with her about it.
So my thinking is this: some people feel awkward and don't know what to say, others really don't care (I hope that's not the case in your family), and others might feel that by not saying anything they are treating us normally. I know that when I was first diagnosed I found the constant bombardment of questions overwhelming, as I was often close to tears. I had to tell a close friend that I was not the right person to talk to about her anxiety over a routine mammogram.
At least here, you can discuss how you feel and we get it!
Take care,
Sophie ❤
Please don't be hurt by people's reactions. Cancer scares people and people often deal with fear by ignoring it. They don't know what to say so either go over the top or don't say anything or even cross the road. And I think most of us look well, I know I do, others want us to be better and take this as a sign that we are.
Also they may feel they don't need to ask because your health is probably being discussed in the family.
Ignore their apparent lack of care, and see it for what it is, people not knowing how to approach the topic. And I think that is why most of us are here so we can share with people who understand what we are going through. 🙂
I can relate to you Lisa but when no one else can “get it”, I come here to vent so let us support you. And while we’re at it, how do you feel? Not just physically but emotionally? I have people who ask about the physical but no one wants to hear you’re losing your mind most days or about the roller coaster we’re on. xo
So true!! I am feeling ok physically (the usual pain and fatigue but nothing new) but an event like this can throw me into a depressive spiral for days. I’m trying not to let it, but wow, it hurts.
I know it is painful when your feelings are being brushed aside, Lisa. How you feel does matter. I just hope that the way you were treated was simply down to your family wanting to treat you normally, rather than not caring about your feelings. Maybe your comment made them think about how they will act in future, so perhaps they will be more considerate from now on. I hope that this has not made you feel depressed or in any way bad about yourself.
Sophie
To begin with when I was first diagnosed, I was bombarded with questions and support. My friends were asking me what was coming next. But as time has gone on, many that we’re not my closet friends have quit.
I think my daddy is in denial or doesn’t understand because there’s so many women he knows that had their boobs cut off and are good now. My mother in law asked about me constantly. When I wear my wig around her she treats me normally but when I have on my scarf she looks at me funny.
My closet friends are there for me day and night. However I don’t talk about that much with them. I want my time spent with them as normal as possible.
I’m sorry how your family acted towards you. Maybe they are in denial also.
Many hugs for you,
Stacy
Hi Stacy,
I have had a similar experience. When I was first diagnosed I was also overwhelmed with offers of support, questions and concern, but that has eased off over time. My closest friends are always open to discussing the cancer (some of them have cancer too), and they have made it clear that I can call on them for support, a ride to the hospital or even the doctor's surgery as I have my zoladex injection. They know I am very independent and just want to get on with things, so when we see each other, we talk about other things.
My dad offered to come with me to have my last zoladex injection earlier this month. When I told him about how big the needle is (he hates needles!) and that I would be fine on my own he quickly withdrew his offer. I can understand how your dad feels too, as mine also thinks I am doing OK. Well, I am doing fine, but you know what I mean. He gave me an insight into how he really felt shortly after I was diagnosed. He has already endured the pain of losing my mum, but he said it would be a terrible thing for a parent to lose a child. So that's why I am determined not to predecease my dad, not that I want him to die, but because he would not cope if he lost me.
All the best to you,
Sophie
Sophie,
I know. My dad depends on me a lot. My mama has Alzheimer’s. He is doing great with her but I’m the one he depends on to organize meds and appts. And keep up with some of his business dealings. It’s a lot for me with all my meds and appts and I’m still trying to work. Like you he has offered to take me to my treatments. Honestly I don’t think I could beat him seeing me hooked up to the iv.
So for right now I’m just going with flow and acting like I’m good. Which actually I do feel pretty good since I finished the hard chemo. Hope it lasts.
:)Stacy.
I know just what you mean, Stacy! It's certainly a juggling act, isn't it?! Having my family depend on me can be hard, but I think it also helps keep my mind off my own worries. I got home off holiday yesterday and the first thing my dad did was tell me about how his car broke down last week, how I would need to organise my brother's overnight bag for when he goes to respite tomorrow, and get the shopping in for the week. I felt like telling him I had been up for 24 hours by that point, was tired and needed a breather, but I didn't get it!
I hope you continue in relatively good health for a long, long time and that you do not have to go back to having chemotherapy.
Sophie x
Stacy, let me just say that YOU ARE AMAZING!!! God bless you every single day!! ❤️❤️ Linda
That is incredibly insensitive and rude! Next time they go on and on laugh and minimize their struggles. And if not remember just bc they are family doesn't mean you need you need to grace them with your presence.
I do not have family but most of my friends don't ask anymore unless like in the past they know I had a CT scan and will ask after I get the results how it went. That is because from the outside I don't look sick and bc I have had stage iv for over a year and a half and they see no change. So if they don't ask, I don't bring it up. The way I see it, many of them have their own issues, my friend's father now has dementia, another friend her adult son was diagnosed with MS. That being said, before I was even diagnosed, a friend had a second reoccurrence. She was being treated and was home now full-time. Every day on facebook she would post about her cancer and symptoms. If I posted something about something I was worried about in my life, she would always respond with "Just be glad you don't have cancer." EVERY TIME. I got annoyed and pmed her and said Just because others do not have cancer does not mean they don't have other issues in their life going on. I know you have cancer but there are also hundreds of other diseases that are worse, where a person loses control of their body, or hearing, or ability to walk. She was actually getting angry when people stopped commenting on her facebook page about her cancer. (NOT comparing to you) but I had the feeling now that she was on SSDI and the cancer was done with and her treatment, that she missed the attention she used to get when she was first diagnosed. I was angry that any time I posted something that I was upset about it was always the same comment from her. At least you don't have cancer. She did not like my reply and unfriended me. Now, I have stage iv. She was stage iii and is in remission. She would no longer be able to use that comment anymore. I think it's primarily bc people can't see our illness. We are not gaunt or bald as they would expect. If i had a dollar for every person who would say, but you look healthy. They can't see the side effects or what we go through so they eventually stop asking. Which is fine with me. I still want people to socialize with me and if all I do is talk about my cancer, they will not want to do so. Plus, I am aware that people have their own issues and to them that it what is important. I do not get hurt when people stop asking and they have. Because in reality, nothing has changed, except my meds. I would not take it personally. I realize it's because we don't look sick. I used to have friends call all the time in the beginning and that has stopped. Because they see me living my life and think well she can't be that bad.
Yes and yes. Had it happen. I choose not to share my "C" diagnosis very often or with many people. One thought is that you probably don't "look like you have cancer." Which is a good thing. Not making excuses for cluelessness, but people are scared and don't know what to say, too. I try to give people the benefit of the doubt and not spend too much of my precious energy on them. That said, it's can be infuriating. So, I'll ask, how are you?
❤️❤️❤️I’m doing well at the moment. That’s what I would have told them yesterday also.
Maybe that is why they did not ask. They saw you having what appeared to be a good time so assumed you were doing well and did not want to bring it up and make you feel depressed. Quite honestly, some of the things people say to me like "But you look healthy" is the same kind of remark I would have said before I was diagnosed. Because I really didn't know much about breast cancer. When I was first diagnosed, I actually thought there was only one kind of breast cancer. I didn't realize there were different types that is how naive I was about breast cancer. A friend invited me to stay over her house for a weekend and I said I can't with this new medication. It causes severe diarrhea and other not so nice effects. She was like why not, I said you have one bathroom in your house and two kids. I said I would be spending 1/2 my time in there. The worst moment is when I was outside of my apt. I do not drive so have to walk. I had an "accident" on the way home and was in tears and sat on a bench for a while realizing I still had a long walk home. Luckily, I had my dark brown pants on
Hi Lisa!
Dumbfounded by the reactions of your mom and your cousin! 😳 I think, in some cases, there’s an element of fear in asking about our health. Close family and friends want to assume that all is well and also don’t know whether we even want to discuss our health in a group setting.
It’s so weird that the BIG C remains such a hushed topic and isn’t treated with openness and hope!
God bless you, Lisa! How ARE you doing, fellow fighter? ❤️❤️ Linda
❤️❤️❤️ I’m doing well. Thank you for your thoughts!
I get what you’re saying
When I was first diagnosed people came round brought flowers gifts etc but that stopped once I was doing more and recovered from the initial shock
I think people don’t understand mbc...they think you have treatment then carry on as normal...unless you look really poorly people just assume you’re ok
Also there’s an element of embarrassment involved as people aren’t sure what to say
I wish nobody knew of my diagnosis then I could sort of put it on the back burner myself...unfortunately my hubby told all and sundry so there’s no escape...I avoid the ones that give me the pity look if possible
I prefer if people don’t ask...easier for all I think...I don’t want attention
Barb xx
I find in the beginning it was all “how are you” and now it’s like people figure you haven’t died so you are ok. 😞. Harsh I know but how it feels.
That’s it exactly!!!
Well, I think that is very true. I mean nothing has changed for me. I still have stage iv and just different meds. My friends realize it is NOT a death sentence now. Many of them know women who are stage iv and still working. But I make it a point if I know a friend is going through something herself, whether it be dealing with her father who just started dementia or another friend whose husband just lost his job at 63, I call them and ask about them and what is going on and the cancer does not come up. If you want people to be concerned about you, you also need to be concerned about them and their problems. Nothing has changed so why would they ask how I feel? They see me and see I look all right. Life is too short to spend time worrying about the little things that used to upset me. And again only you can make yourself angry or depressed by the way you choose to react.
You could be right, Sarcie! Along with "How are you"? There's the other one: "When is treatment ending?" I find that comparing this to a chronic long term condition (which it is) helps with people's perspective of what we are going through even if they don't exactly get it or understand our situation.
I used to at first say I had stage iv. I no longer do that because people hear stage iv and think you will be dead within a year. I just say I have mbc which is more of a chronic illness which I think it is. I know many women living five years and longer with stage iv.
All time 🥵
Omg. That's so horrible. I can't believe how inconsiderate people can be.
That is just too much.
But I also think people don't know what to say to us! Maybe it might be better just to let people know how you are. I don't know, that's a tough one because it hurts so much.
I don't think they are being inconsiderate. If we lost alot of weight or had problems walking they may ask but if we look fine and are having a good time at a wedding or a barbecue, why would we expect them to always ask how we are doing. I would be the same if the shoe was on the other foot.
I also think it's caused by those stupid Ibrance commercials. If you have mbc and take Ibrance or something you are ok and happy and living your life like a normal person.
Really ??? I never saw one
All pharmaceutical companies have commercials for their drugs. If they showed the reality, women would be too scared to even try them. Before my diagnosis, I was a legal assistant for a partner in the law firm who, along with other major NY law firms, worked in division for pharmaceutical companies to help them with warning labels. A new drug came out that was for Parkinson's disease, restless leg syndrome. It was FDA approved and was put on market with the requisite warning labels. After almost four years, they were finding that for SOME people, (this is going to sound so odd) who never gambled much other than occasionally buying a lotto ticket or doing a once a year trip to Atlantic City developed an obsession with gambling. Serious stuff. Some lost their home, one women went through $100,000 in a year, one man went from buying $10 a week scratch off to spending almost $5,000 a week until he went bankrupt. Plaintiff's class action lawsuit required us to request discovery documents. Him and my boss did NOT get along, screaming on the phone. He sent us this huge box that was in a woman's basement with all the scratch tickets she had bought in two months. Thousands of dollars. But he was rude about it. They were in a box in a basement where there was a severe leaking problem. When the paralegals opened the box, the stench was unbearable. It went throughout our whole floor. So for some people, they can't see the future and who would think that would have become a side effect. So the pharma companies paid out and they changed the warning label to include may cause obsessive gambling for some. I mean let's be serious. We have cancer which is a sneaky disease so it requires major toxic drugs to battle it. For the most part, we can all see, hear, walk, talk, think, and have a semi normal life. There are so many other horrible diseases that cause one to lose their ability to walk, see, hear or cause tremors. All in all, I think this is not such a horrible disease compared to others that people get. Other than some side effects for most, you can still live a life and I know many MBC women who still hold down full-time jobs. So I feel thankful if I had to get some kind of illness, that it is an illness that still allows me to enjoy things with some bumps in the road AND that I got it later in life as opposed to young children and young women who may not be able to have children bc they got it young. I just don't think this disease is the worst out there. We can still live a somewhat normal life.
Hi Lisa,
I truly think people don't know what to say or how to act when someone has cancer. Do I say something Do I treat her like she is normal?
My daughter just took a job of being a companion to a 62yr old woman with pancreatic cancer and maybe 6 months to live. She passed out one day when alone so can not be alone yet her husband and daughter need to work.
She said mom you take care of yourself and never complain, what should I be doing for this woman. Physical therapist comes in morning house cleaner Avery other week. Her husband buys or cooks dinner. What should I do. Now when I was having radiation or chemotherapy. My husband took care of me, I would always say I am fine to my four grown children. They did not see my vomiting or diarrhea or where I could not look at food. The pain I was in for days after chemo. I could not taste food so stopped eating . They all have kids and work so they are very busy. When they come to visit I always put on good face. Dressed makeup etc. One daughter lives upstairs in my three family home. So she would come down and do things. But I would hide a lot from her, because she has pancreatic.problems and is disabled and in pain most days. I am her payee on SSDI. Cannot stress her to much.
So we do. Get good at hiding our condition from people.
So back to my daughters new job. I told her to let the woman lead the day. Just make her comfortable. Tighten her sheets and make bed everyday. Don't force her to eat, see if she would like you to make her a nice shake or a cup of tea. If she naps on couch bring a book or kindle so she does not feel like she needs to entertain you. Talk about her small grandson or the new one coming. See if you can do a load of laundry as she may had an accident and needs to be done today. Talk about happy times and trips she has taken. Etc.
Well she learned fast she said when she gets there the woman may have laundry in washer to be finished or the sheets on bed to be replaced. My daughter said can I start some dinner before your husband comes home. Now the patient tells her what she would like her to start for dinner from recipes she always made. She will go to store with her and pick things out. Takes her to chemotherapy. Watches tv shows and she said we laugh a lot.
She says mom I had no idea this is how your days are sometimes. You always make us think this is no big deal and you will be here for a long time.
I feel bad as the doctor told the woman in front of my daughter that she was in final stage and increased her pain meds. My daughter said the woman acts like all is well when husband and daughter are there but she knows she is in pain and waiting to go at this point.
So again I think we learn how to hide our illness so people don't ask how we are because we look good.I never go out without a change of clothes in car . I can keep these secrets from my husband even. I think it is just how we women are made. We want to look strong to our family and friends and that is how they see us.
I do have support. My kids and sister in laws about seven of them plus friends that call at least twice a month, my brother lives near by and calls or drops in with food or wine, he is so funny. Will ask to do something on house etc.
So I am lucky
So I think people are so busy with things in ther lives that they don't know what to say to us. Will it insult us or make us feel better.
Barbara
I consider it a good thing when people do not look at me as ill. That is what I want. I tend to feel worse when people act as f I am dying. It is a chronic disease and that is the way I think about it.
I agree but maybe I am different. I do not understand why some women get all upset because people don't ask about them or how they are feeling every time. I have side effects like most on here, but no, I do not feel any reason to tell my friends. They come and go and unlike most on this board, I am not married, have no kids and no siblings and live alone. I rely on myself and I don't need people constantly asking how I am doing. They see me and can see I am doing okay. When I am at my cancer center reception, the kids with cancer and their parents have to walk through to get to the door where the children's cancer section is. Try sitting there and see a mother with a three year old who is bald with needles in their arms and trying to move the stand as they walk. Yeah, we have a chronic illness that sucks in that sometimes we get tired or our bones ache, etc. But all in all, take a look around and realize we are not that bad off compared to others.
Ct scan -chemo
