Help me with anger phase please - SHARE Metastatic ...

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Help me with anger phase please

Marthasvineyard
Marthasvineyard

Ladies - thanks for all your support and for being there for me and all of us. I just need to vent. Initial dx in 2004, recurrence in 2014, and MBC June 2018. On Ibrance and letrozole. I am acutely aware that I am nearing my 2 year MBC diagnosis and the overall prognosis. I have scans this week and meet with my onc on Monday. I worry of course that I will hear about progression.

I am especially angry now because, other than my sister, I feel like my husband, daughter and the few friends I've shared this with seem to either forget or can't bring themselves to check in with me. I'm aware that my emotional IQ might be too high. But I feel like I am there for others, and don't feel it's returned. My cousin with whom I am close lives a few states away and is preoccupied with her teenage kids. We were supposed to visit in NYC and she completely dropped the ball. My dear friend who lives several states away keeps saying we should get together and then she disappears. I spoke with her about this and she acknowledged it and then poof.

I used to say that I get it, others are busy too. But I don't want to say that any more. I see a therapist and exercise, etc. so I do what I can for self care. I am tired though of no one else picking up the baton. I expect they will be there when I progress but wish they would embrace that I feel ok now and support and be with me now. Thank you for letting me vent.

61 Replies
oldestnewest

You are welcome to vent here! I am seeing this now that I have MBC and even though I haven't told many people, the same is happening. My dermatologist treated me like I had the plague today after I told her my diagnosis.

When my sister had MBC (she survived for six years) no one came to visit or help until the end when it wasn't helpful at all. So many asked to help and then never showed up. One of her friends was supposed to stay the weekend and give me a break but left because it was "too much for her".

It is frustrating and I wish I could offer advice but all I can do is understand.

Vent all you want! xoxo

Your experience with your dermatologist confirms my decision to not visit the nice nurse who did my facial laser treatments pre MBC diagnosis. She reacted way too emotionally when I had my first recurrence and I found myself boosting her spirits rather than the other way around. I know if I mention MBC she will melt down. I realize it’s startling to hear the first time. But the ones who now disappoint me have known for a while. My wonderful sister says it’s because people see me as strong so they don’t follow up. I should not have to be a public wreck to have them reach out. I’m so frustrated.

I thought about this a lot last night and I want to add that there were some unexpected angels during my sister's journey who helped immensely...people we hardly knew..a lady who needed a place to live stayed with her for a brief time and cooked and drove her son to school. Maybe it was easier for her because she was not directly involved or related. I don't know the answer but there are some really good people out there who do care.

Hi Martha,

You have every right to vent and to feel angry with people's reactions and inconsiderate ways. It makes me think of my mum's situation. She died from non-Hodgkin's lymphoma back in 2004. Other than my dad and I, no one else in our family did a single thing to help us or her during her illness. They never took her to the hospital for treatments or other appointments and it was only as she lay dying that her youngest sister and two of her brothers decided to fly over to see her (they didn't make it in time). Then at the funeral, some of my mum's siblings and other relatives shed their tears and acted like they really cared, but if that was really the case where were they when we needed them the most? They soon disappeared after the funeral and I have not seen or heard from most of them since.

So, yes, I get it. People say they care and will get together with you when you need them, but many often show their true colours when you ask for help. I know who I can rely on and trust. Many people have abandoned me over the years, so when someone suddenly stops talking to me I am no longer surprised. It still hurts, but I just pick myself up, dust myself off and move on. It's when you are in real need that you learn who your real friends and family are. Fortunately, I do have a good group of friends that I can rely on for support if needed and that helps replace the void left by my extended family.

Sorry, I didn't mean to talk so much about myself. I just wanted you to know that I understand the hurt you are feeling because I have felt it too.

Sophie

Sophie — no need for an apology. When my father was near the end with Alzheimer’s our oldest brother who perceived himself as the big brother was noticeably absent. It mostly fell to my sister and me. At Dad’s service, the oldest brother did the eulogy and spent too much time taking about how he wished he could be more like my father. The irony wasn’t lost on us.

I’m usually good about dusting myself off. As you may recall from other posts, I enjoy riding my e bike when winter leaves, and I stay active. But I’ve noticed this issue lately and it’s got me down. It’s making me even more nervous than usual about my upcoming scan results. I feel this sense of dread. I also feel that other than my sister, who else will be my rock? Sigh.

Hi Martha,

I'm sorry to hear about how your brother behaved. Sadly, it's not uncommon for family who have not been engaged with us and other family members to put on a pretence and to act like they were model children/siblings and so on. Perhaps they act like that to help soothe their conscience.

It sounds like you are going through a hard time with your feelings of dread. I hope that your upcoming scans will yield good results for you. Let us know how you get on.

Take care,

Sophie

I pray your scan results are good. I understand the dread. Let us know the outcome.

Martha I'm sorry that you are at an emotional low at the moment. I can totally understand the feelings around approaching a certain point of fighting with the disease and the thoughts around overall survival data. It's hard when people don't step up to the plate to help or acknowledge/ ask how you are feeling. As many ladies have said unfortunately this disease is such an unknown and when people see you looking normal on the outside they feel it is a reflection of how you feel. That's what we are all used to doing before this diagnosis too. Like you I love riding my e bike and miss it so much....it will be many months before getting out again will be possible where I live. With my fractures and bone mets I am really limited to types of exercise my oncologist will let me do. I was starting to get down too and finally invested in a high quality stationary bike and cycle when I can again now with virtual cycle rides all over the world...makes the time go fast and I don't get bored. I've only had it for 3 weeks but absolutely love it. I want to wish you stable results with your next scan. I'm not going to tell you not to worry as I know we all do and our minds are the most powerful organ we have. We are all here for you. Take care.

Sandra

Hi there

When I was first diagnosed with mbc...I had loads of attention from people who knew...tons of flowers cards etc...that soon stopped and I know who my true friends are...even my husband never asks me how I am he just goes off and does his own thing and leaves me...so I do stuff by myself a lot

I actually don’t care now...have my special friends and don’t mind my own company

I know how you feel though but I think you have to be selfish yourself and not be hurt by others indifference

Barb xx

Barb - yes, I’ve heard you say your husband is not engaged. I’m so sorry. My husband comes to my appointments but is otherwise quiet. Recently I spoke about taking time for vacation. I’m retired now and want to travel. He said he wasn’t sure he could get time off — which is not accurate. I reminded him quite energetically what the heck he’s saving up his days for. What’s the point if we don’t take advantage now. He’s a good guy but just hard to emote. Honestly this has me so sad that I’m now projecting that my next onc visit will bear bad news.

I know exactly what you mean...re the holiday thing

Last year we had a family holiday in Italy..with my two daughters and their partners....my husband was so miserable and critical...wouldn’t come to Pompeii with us or drink and hung around outside shops when we were looking at stuff....I was so disappointed ( we’ve had several family hols before so it wasn’t a new thing) my girls think he’s rude

Since my diagnosis though...he’s turned into a fitness fanatic...won’t drink or socialise and criticises people all the time...if I wasn’t in this situation I would leave him....but then he maybe wouldn’t be like this if I didn’t have mbc....I think it’s brought out his true colours and I’ve realised how selfish he is

Anyway it’s what it is and we have to make the best of things

Don’t fret about your next scan...it won’t change a thing ...not easy though...I’m exactly the same!!!

Barb xx

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

I'm sorry to hear that things have not improved with your husband. Can you talk to him about how you are feeling?

I have to remind my husband that I am not the person I once was and that his expectations of me are sometimes too much. He works longer hours than I do, but I am still expected to do a lot when I finish work such as run errands, fix things, go shopping, and do other things. It can all get a bit overwhelming at times when all I want to do is relax and not have a long to do list to get through. Reminding our relatives that we have limitations (not always physical; I find the mental side of things a challenge at times) can help them see that we need more support.

Sophie x

I don’t blame you for feeling the way you do. It’s hard to feel abandoned by your friends and family. I’ve got enough people that care that I just ignore the ones that don’t reach out. However I think many see us as strong women who don’t need help once we are out of the acute stage. I am bad at it, but I think we need to learn to speak up and tell people what we need. If we tell them directly and they don’t respond, then I guess you have to write them off. However I know I am not good at the direct ask, I’ll hint around and some people just need a baseball bat to the head to get the point! If I have to be that direct, I probably don’t want their care anyway. Hugs!

Elaine

I am sorry you feel bad it happens to me too at the beginning I had friends and family around that was more than two years ,but now it is like is a chronic disease like diabetes but having labs, scans, changing Chemotherapy and all the side effects

My husband is the one who helps but even him sometimes talk to me like nothing is happening to me because I try to live as much normal as I can

I am still working full time and I only told my MBC to my close family and friends

What it work for me is the prayer and I feel like God is good is helping and protecting me God bless you

I am sorry that this is happening to you. I am coming up on my one year anniversary of being diagnosed. I have had relatives say, " you look good every time I see you." What am I supposed to look like? My ophthalmologist was not going to bring it up (my husband had told her at his appointment). She said you would never know you are sick by looking at you. Again what am I supposed to look like. I am feeling good and my MRI scans of my abdomen have been stable. I have a tumor in my liver. I have friends that are in touch all the time so I am thankful for that. I had a relative stay with me at Thanksgiving for 5 days and she never asked me how I was feeling. Also at Thanksgiving dinner two of my relatives that I see once a year never spoke to me. One is a nurse and I expected her to say something. I guess people just don't know what to say or think I will be uncomfortable talking about it. Next MRI is on the 20th and hoping for no progression.

SophSP
SophSP
in reply to cpidacks

Hi,

I think a lot of us hear "you look well" from well meaning friends, family and strangers. I have found myself saying that the reason I still have my hair is because I have not had chemotherapy, as many seem to question if you are really a cancer patient if you still look "normal". I know that before my diagnosis I used to associate bald heads with cancer too, and never thought about all the other cancer treatments that are available which allow people to still look the same as they did before their diagnosis. In a sense, we have a less visible disease, as many of us have not had chemotherapy and do not stand out in a crowd.

I wish you well with your upcoming MRI.

Sophie x

cpidacks
cpidacks
in reply to SophSP

Thank you.

SophSP
SophSP
in reply to cpidacks

You're welcome.

It is hard when our friends and family don't offer support. I wonder if sometimes it is because they don't know what to do. Men have such a hard time expressing what they are feeling. They may be concerned about being left behind to pick up the pieces? I know I always feel like I need to be the strong one now and assure everyone I am fine, when sometimes not so much.

SophSP
SophSP
in reply to NShaft

You could be right. Some people may not know how they can help or what they can do. It's not like they can make us a bowl of soup when we have a cold, and then a few days later we are back to normal again. We have a lifelong disease that we have to deal with each day. I often find myself telling people I am "fine" too, which I am, but I do still have off days! My dad gets anxious and worried about me if I say too much. He called me on Monday when I was on my way to the hospital for genomic testing and was alarmed when I said I was at the hospital. I had to reassure him that I was OK, which I was. But he was probably thinking the worst.

Sophie x

Wow that was on point....just because I look good and try to keep up with my daily activities no one asks how I feel any more..Little do they know the pains I get and the tiredness I experience and the anxiety I experience is no fun...but like you said they will probably be there when I’m in a different stage of this horrible disease....but I would like to hear “how are you and how are you feeling for a change” ...............also just venting

I am coming thru a very rough spot. Radiation and chemo. Emotional mayhem. It’s been a good 2 months of treatment with months before that of procedures and symptoms. One of my long time friends has just disappeared. She seemed to have a passing interest in the treatment plan and the doctors, then nothing. Not even a text. After Christmas I got a text with a photo of her with her extended family. “Happy Belated Holidays.” I deleted it and didn’t respond. And she is a therapist. I am very hurt by her, although I know you cannot make people give you what they don’t have to give. If we ever resume communication it will never be the same. I try not to obsess about it as I don’t want to waste my time caught in a loop of resentment and sadness over her behavior. I do have people who are there for me. I have to let the others go.

I am glad to see you post again and hope you are moving on from your rough patch. I am sorry to hear about your friend. This sounds so much like my sister's "best" friend and it is very hurtful. Please know how much this community cares about you and wishes you well.

SophSP
SophSP
in reply to nstonerocks

Hi Nancy,

Your friend's neglect must have really hurt. You would think that as she is a therapist she would be more empathetic. I hope you are coping well with your treatment and are feeling better.

Take care,

Sophie 💓

nstonerocks
nstonerocks
in reply to SophSP

Hi Sophie

I am very hurt. But I have to focus on the positives so I’m trying to let it go and move on. When I think about it, which is too often, I interrupt the inner dialogue and say “I wish you well but I have to move on’. It sort of helps. Otherwise I could really spend a lot of time on this and I have so much else to focus on.

SophSP
SophSP
in reply to nstonerocks

Hi Nancy,

That's the right attitude to have! It would be so easy to allow others to rob us of our peace.

Sophie 💓

Far from a vent for me. ..I live overseas,maybe you hear me..

Let's face it ,why am I here ..because people in the same boat get it, others with all good intentions don't. Finally my husband said...I'll just pretend nothing is wrong with you ok..bottom line he can't deal. In some ways he went to a bit of an extreme in ignoring me. Friend therapist explained that after losing his twin brother just can't face even the possibility of being hurt like that again...so he shuts off emotionally and does the dishes,and the floor....and that gets me a bit bananas. Want him just to sit with me. I really feel people close to us don't get it...and honestly did I get it before diagnosis, yes and no. My best friend was so ill...I am filled with regret didn't help her more.

One councillor met with me and my husband during a wonderful retreat for couples who one partner is in treatment.

He said you need a support system...in addition or even in.place of your husband.

I haven't confided in many friends....a few. One is a fighter and pushes me to take care of myself...but honestly I didn't talk about stage 4...even to sister and brother..somehow don't want to cause them the pain if I'm functioning etc....they live very far away. Bottom line,

It's work but need to find the benefit of the doubt

Quite a "package" this diagnosis...but somehow it's really for the good and will with help from Above bring revealed good.Good news,well being and a complete recovery for everyone

I can't believe a lot of comments I get. When I have scans coming up, people say, you look great, you're fine. I know someone who has cancer that doesn't spread. She's on a maintenance chemo occasionally. She asked me, when do you get to quit treatment. I told her, when I die. I've told this before. Then there's the friends that can't figure out why you can't keep up with them and be on the go all the time. One even said, well, I have arthritis. Then there's the ones that say, well, God has given you 2 years after being stsge 4. I've been stage 4 for 30 months now. Getting results of scan tomorrow. They believe there is progression. My best friend said. At least you've had a life. Look at the kids that die and get no life. They think you get chemo, feel bad a couple hours then you're back to normal. Most people don't get it until it happens to them. But I don't want anyone to get this disease just so they will understand. My rants over.

nstonerocks
nstonerocks
in reply to Selmac

OMG. There are many wise women here who would handle these comments deftly and with class. At this point in time that wouldn’t be me.

SophSP
SophSP
in reply to Selmac

Hi Selma,

Wow! I am really shocked by some of these comments, especially the one about arthritis and children dying. That's very hurtful! Just because we are adults with cancer doesn't make our lives any less precious than that of children afflicted with this disease. We are equally precious. I had an elderly gentleman say something similar to me in the day unit a while ago. He pitied me for having cancer at my age while he had "lived his life" but I reminded him that his life is also precious.

All the best,

Sophie 💓

I hear you. The same has happened to me. They just don't get it. Therefore, we need to depend on ourselves and very few people for support.

This board is invaluable!

I'm angry sometimes too, but the anger just makes me miserable, but they are fine.

I find I have to let go of it and carry on myself.

I'm glad you vented. That is why we are here for each other for good days and bad. It is so good to express our feelings. It is theraputic to get it out.

I get it. You would think they would want to get together, as you say while we still can! That's how I know they really don't understand our situation. One person texted me to say we will get together in the spring! Well, we will see how it goes.

I also feel like they are really uncomfortable with what to say to us.

Meanwhile, we need to treasure and hold tight to the people in our life who will support, be with us and accept us as we are.

SophSP
SophSP
in reply to mariootsi

Hi Marianne,

These are wise words! I think you are right. Some people are just uncomfortable and don't know what to say to us. I don't mind if someone has a question, as I will do my best to answer it in layman's terms. That can help educate others who are genuinely interested in cancer and trying to help us.

Sophie 💓

Thank you all for sharing how difficult this journey is on our relationships, unspoken hurts & unmet needs. I received lots of beautiful cards & meals when Dx with stage III breast cancer in 2016. When I “survived” I thought back on how kind people were during a difficult time. I told my twin sister it was like attending my own funeral and hearing everyone say nice things. Once the crisis was over, everyone went back to business as usual. I don’t really blame them. It takes a lot of energy to give for a long period of time.

When I got the Stage IV Dx in April 2019 I decided to tell very few people. Close family & a few friends only. I’m not good at expressing my needs. I wasn’t in the mode of receiving meals either. I was adjusting to it myself and all the emotional, practical & physical side effects that came with it.

Looking normal but not feeling normal is really strange. I long for normalcy but I’m more tired, forgetful & anxious than my former self. I am learning to say no more often and do less in a day and be okay with it. People have always let me down. Then occasionally they surprise me with a genuine act of kindness, a thoughtful card, a call to see me, etc. it’s usually the small things that make the biggest difference to me. I enjoy my own company. Like to visit my mother in her assisted living facility (I like to make her happy), and have a meal with my husband. God is my refuge and my strength. I don’t expect much. I enjoy the moments and the beauty in each day.

Thank you all for the realistic & encouraging (because I’m not in this alone) comments you’ve shared. ❤️🙏❤️

“Looking normal but not feeling normal is really strange” you write. So very true. This is the kind of insight and meaning that comforts me from this message board. Thank you.

I get it. I live alone and have no family or friends that even live close by and I don't drive so that is a problem. Either you hear people complaining that they are tired of people constantly asking how is the treatment going because they want to feel normal and don't want people asking unless there is a good reason. And others, like me too, feel sometimes that since I am still alive two years later, it is not as bad as they thought so they don't really ask anymore. I have no friend who has not even made an attempt to see me or see lets meet in Manhattan and go to dinner since my diagnosis. She emails me every day from work so I guess for her that is "checking in" with me.

I was not feeling well during the xmas holidays and although one friend invited me over for Christmas, I would have had to sleep there for a few days and the way I felt I could not even though I wanted to so badly. But then nobody, not one person, called me on Christmas.

I always have to remind myself that I am not working anymore. Most of my friends still have full-time jobs and then on weekends they have to do their shopping and laundry and such. One of my friends' husband is having spine surgery this week, another one is now caring for her mother inside her home, another one's son was just diagnosed with MS.

So we kind of have to remember that our friends still have busy lives and have their own family and issues that they are going through. It is not just about us. They have people within their own families that are going through difficult times.

Plus, I realized that most of them don't get it. If I tell them too much, they get scared almost and don't want to hear it. So basically, I deal with it myself. I can't/don't expect my friends to put me before their own problems. But the one that emails me every day from work, I have not seen in about three years, even before the diagnosis. I would have thought she would have said lets meet for dinner and discuss since she knows I live alone but she never did. But I also know she has a high pressured job and then on weekends, has so much to do on top of caring her mother.

The holidays were depressing but I was feeling so sick that I needed to be home. I slept alot (discomfort mixed with depression.)

I will be 60 on Friday and a year ago I was going to plan a party for myself at a restaurant. But I feel so much worse than last year and the realization that I am not going to feel better so I never did plan anything.

Don't take it personal. I think most people assume that if something has changed and got worse we will tell them but otherwise if people asked me all the time how am I doing, there is really nothing new to report. So we have to remember others have their own problems and they may not be telling you bc they know what you are going through. I have learned to rely on myself.

I actually had one friend (the one I referenced who emails me but has never said lets get together for dinner (she works in NY) even after my initial diagnosis. She did say, however, that if I wind up in hospice to let her know and she will sit with me and be with me. That kind of annoyed me and I said if I have to go into hospice, I will deal with that by myself. I said I don't want people showing up at hospice to visit me when they never made an effort to come and see me when I was home and alive.

Barbteeth
Barbteeth
in reply to aamkearns

Good for you...she’s not a true friend but someone who wants to gawp...and if you were in a hospice you would be cared for so she wouldn’t need to do anything....this makes me so cross

Barb xx

mariootsi
mariootsi
in reply to Barbteeth

I agree Barb!

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

You are right! I agree with you.

Sophie x

SophSP
SophSP
in reply to aamkearns

Hi,

That's a very insensitive thing for your friend to say. So she is basically saying "don't bother calling on me until you are dying". I had a similar experience with one of my aunts after I was diagnosed. As soon as she heard I had cancer she was prepared to get on a plane and fly over to see me. She did the same when my mum died, but had made no effort to come see her in all the years she had been living in the UK. I didn't want that kind of attention, so without telling her how I felt I just passed on a message to my cousin to let my aunt know she did not need to come over. I won't have people coming to see me on my deathbed, or my supposed deathbed.

Sophie

aamkearns
aamkearns
in reply to SophSP

I think she said it bc she was trying to let me know (as I have no family) that she THEN would be willing to be with me since she knew I had nobody but like I said, if and when that should ever happen, I would prefer to be alone to mentally get ready to prepare myself for the next step. I also have a friend in FL to take care of things (she has the legal power) if and when I should pass. I told her no funeral service or memorial service at all. Funerals are for the living, not the deceased and people who never reached out when I was alive, would show up for the funeral though. So that would annoy me (even if I was gone already LOL). I have no family so who would people give their condolences to? I think when I emailed her that reply (she replied I understand) it made her realize what I was saying. She emails me every single day, but has never said come to Manhattan and we will meet for dinner even after I was first diagnosed. It has been four years since I physically seen her. So for her, I think by emailing me every day, it makes her feel like "she is doing something" for me and it makes HER feel better, not me. But I know she is coming from a good place and not doing it to hurt me. Like I finally realized, they really do not get it because they are not going through it and she has alot of family and support, so they don't understand how the littlest thing can make a big difference. I have a former attorney that I had worked with in the past (five years ago) that every 2-3 months, she will drive in from NJ and we go out to dinner and talk. She makes the time for me bc when I worked for her (she was an associate) and a nasty partner (New York law firm), he was always screaming at her and she was a nervous type and would get very upset and I would go into my partner's office and tell him it wasn't right that he screamed at Julia like that when the other associates on our team did not work half as hard as Julia and always came in hours late when he worked from home (which he did often) but that Julia would still be in by 9, working through lunch and staying past 5. (He was bipolar...they told me that after I was hired to work for him LOL). He would then apologize to her. She said she never forgot how many times I went to bat for when he would be screaming at her. My partner depended on me like I was his mother (He was older than me). That means the world to me that my former attorney always sends me gifts for xmas and my bday and makes an effort to come into Brooklyn to visit with me.

SophSP
SophSP
in reply to aamkearns

I think you're right. Many people do not get what we are going through because they have not experienced it. Metastatic breast cancer is a very isolating experience, so much so that I can't even relate to early stage patients. They must still face a lot of fear (of recurrence or reaching our stage) but their treatment path will be different to ours. They will have an end date of treatment in view and will work towards that. All the friends I have who have had breast cancer have put it all behind them and are getting on with their lives. I wish I could do the same.

Have you asked your friend who emails every day if she will come visit or invite you over? Maybe she would if you mentioned how long it's been since you have seen her in person.

Sophie

aamkearns
aamkearns
in reply to SophSP

I know too many women on stage iv forum boards who were diagnosed years earlier with breast cancer, had the chemo, radiation and breast removal only to find out 12 years later that they now have MBC. No breasts does not mean you cannot still get MBC. Nobody is ever cancer free once diagnosed.

No, I have not asked her bc I know how she always tells me her weekends are crazy bc she has to get so many things done that she cannot do during the work week. It is no the same if you have to ask somebody but I also understand that she has a family and things that need to be done. I would have hoped when I first told her of my diagnosis over two years ago that she would have said lets get together and talk about it. She knows how long it has been.

I guess her emailing me daily from work is the best she can do time wise with her schedule. Plus she has a 7 year old granddaughter that she tries to spend time with for a full day on weekend.

Thanks for everyone's input and support. I remain frustrated because it is relatively easy for anyone who cares about us to do some internet research for ideas. There are books too and these folks can contact a hospital social worker themselves if they are so invested. I found this for example just now: med.stanford.edu/survivingc...

Wow, I think we are the only ones who understand what we go through daily.

You have all expressed my feelings exactly. Some days are good, other days not so good. Just a hug without saying anything is good. I send each of you a warm hug. Blessings, Hannah

aamkearns
aamkearns
in reply to hdhonda

That is what I have come to realize what you referenced above. They do not understand because they are not going through it and they say the same things I would probably say (you look good) if it were reversed. It is hard for people to "get it" (1) because they dont have the same illness and (2) because most of my friends have family so they would never be alone and would have help that I don't have. I now keep more things to myself since I realize my friends who are not ill really do not understand what we are going through.

People just don't get it! I understand that there is a lot to MBC and that the 'usual cancer narrative' has an end point, so that is what people, in general, understand about cancer.

However, one would expect more understanding and support from true friends and family. It is unfortunate that this is often the reality that we face. It is hurtful and isolating. I completely get it. At a certain point, letting go of these folks is the best option for our own sanity and mental health.

I recently had a very good friend tell me of their troubles (car needing repairs and/or replacement), lease expiring within a month (not sure whether to stay or move), possible strike at work. This friend was completely out of sorts and cut short a day planned together because of this. They actually said to me that they were in CRISIS! This was at the same time while I was awaiting a call from my oncologist to discuss scan results. This friend knows all about my health circumstances and knew about my recent scan, scan-xiety, and that I was waiting for a call that very day from my oncologist, etc. and the stakes surrounding the results. I found it most offensive and insensitive that they would refer to their pending/uncertain 'situations' as a CRISIS! I really wanted to yell at this person (and think a smack would have been an appropriate, but not 'correct' response). I was calm (thanks to my meditation practice), wished them well, and said goodbye- for the last time. That relationship is over. I don't need those kind of friends. I have no time or energy for it. I have a true crisis to manage.

I also can relate to the husband issue. On the day of my initial diagnosis, my husband spent the entire evening watching the 2hr extended season finale of his then favorite TV show. I was upstairs in the bedroom crying and in shock. He came to 'check in' during the 'intermission' break and said we could talk after the show. On the day of my bone biopsy- he disappeared to the mall across the street during the procedure. I was waiting in recovery for almost an hour for him to show up (he had his phone on silent and didn't check it).

I think we are all justified in our frustration and anger.

I hope your scan results are good.

Nama

I don't mind that as much when friends complain about things in their life which may seem trivial to me, but to them it is not. I have to remind myself just bc I may feel I am in a worse position, to them what is going on in their lives is bothering them and if I expect them to listen to me, I have to do the same and listen to them. My friend who lives in FL and calls me alot to see what is going on has been depressed for the last few weeks. Her husband who is 62 lost his job in FL and she works and she now realizes her husband will be unable to find a job and that she will never be able to leave the job she hates. She said she was so depressed about these holidays about the future because they were not doing so well when he was working. So I am okay with her calling and letting out steam also to me. (1) It takes my mind off making it all about me and (2) I need to be able to listen to her just like I expect her to listen to me.

I don't mind when friends complain/comment about their issues/problems. That's life! That's what friendships/relationships are about. My issue is when there is an inability to put things into perspective. I wasn't saying that I just 'discard' people who think they've got the blues just because their blues ain't like mine. I support my friends in their endeavors and during their trials and tribulations (even if not as serious as cancer).

But whether or not one understands what MBC is (and most don't fully get it), we all know that cancer is SERIOUS and I think that sometimes people are insensitive and perhaps egocentric (as in the example I shared- there is more to the story).

It hurts when those closest to you CAN'T or WON'T relate to you anymore because they don't understand (and sometimes are not interested in) how your life (and being) has changed.

Most of my friends and one is a nurse call it a chronic illness. Even my cancer center does not consider it terminal. It is a life-long chronic illness. And whenever I am having a pity party for myself (which happens) I remember that there are so much worst illnesses one can get like ALS in which one slowly loses their ability to use their body and wind up in a wheelchair. It's all relative. Yes I have pain occasionally, and the side effects from the meds can be depressing, but I can walk, hear see, write, comprehend, so considering some other diseases, I realize it could be alot worse.

You vent all you want. Sadly I think many of us have people like this in our lives. They are all messaging or bringing food when you are first diagnosed and how I can’t find somebody to go with me to my oncologist appointment without my husband or one of my kids taking time off work. My sister lives 10 minutes away and she hasn’t been to my house since the summer. She came to pick me up the other day as we were taking our mother out somewhere. She commented on my entry way and I just looked at her and said have you not seen it before ? She said no. I painted it last June. 😞. I know people have their lives but they don’t seem to realize that even if we live with MBC for 10 years, each day is the same for us. Pain, fatigue, worry etc. Vent to us anytime you want.

aamkearns
aamkearns
in reply to Sarcie

I think when people first hear you are stage iv breast cancer, they expected me to die within a year and when they see you are still alive two plus years later, they realize or think it is not that serious so they drop back.

Sarcie
Sarcie
in reply to aamkearns

You are right. They don’t understand that we aren’t “all better” 😞

aamkearns
aamkearns
in reply to Sarcie

If the shoe was on the other foot and I did not understand it, I would probably tell them they "look good" to make them feel better, not understanding how it works. We cannot expect people who do not have it to know "the right things to say and not say."

aamkearns
aamkearns
in reply to Sarcie

You are lucky. You have people to go with you to appointments? That is more than I have. From day one when I was diagnosed, I have always went alone, even for the lung biopsy, which I was scared of. I had surgery and went alone . I was alone when I was told I had breast cancer and then alone when I was told all treatment was off bc it was in my lungs. I go for all CT scans alone and regular appts. and injections alone. I have never had a person to come with me to any appointment. I do not have family nor would I ever ask a friend to take a day off to accompany me since that is their vacation/sick time and they may need it for their own family. None have offered either but they do not live close to me. Meanwhile my friend in FL has one of her sisters go even if she is having a colonoscopy. I have had a colonoscopy done and walked home (way before cancer diagnosis).

Real question after readying so many similar shared experiences: Has anyone tried to talk with these folks? I’m wondering if, for example, I nicely remind my cousin and daughter it’s been 18 months since my diagnosis and she’s let our connection slip and I’d like her to refocus whether something like that would help me

Or is this just goi g to result in others being offended and hurt me more?

I think confronting them might make matters worse...I would prefer people to willingly be my friends rather than think they should because Ive said something

Just my opinion

Barb xx

aamkearns
aamkearns
in reply to Barbteeth

I agree 100% with your comment.

I understand but I’m not thinking of just “people” in a generic sense but specific relatives. Does that alter your opinion at all?

I haven’t said anything to my sister as I don’t want to make the situation worse. But, I am nonconfrontational also known as a chicken 😉

Maybe the answer to all the people that say you look so good is to say thank you, I’m fortunate because the things that aren’t so good are on the inside and don’t show. I wonder how many of them would follow up with a question of what is bothering us? Maybe it’s an experiment we can do!

Off to bed so the outside will continue to look competent and well!

Elaine

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