Vent about long term treatment

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Larkin
Larkin Member Posts: 58
edited April 2019 in Stage IV/Metastatic Breast Cancer ONLY

I can only say this here to those that might understand. My not so DH and I were debating who would do an airport run on Friday night and I said I have chemo Friday morning. That MotherFu@#$&er said, “You have chemo every Friday” as if it’s no big deal. Yes, I do my best to keep up with everything and my diagnosis is only known to a few and yes I look healthy and not the pitiful bald patient...but seriously! I was pissed! I’ve had TWO years of surgery and radiation and Ibrance and multiple chemos and it’s going to be for the rest of my life and only get harder and harder! I see all these early stagers with meals coming everyday and gofundmes with thousands of dollars to help with bills. I like my privacy and I do drive myself to treatment and all, but damn! Sometimes it would be nice to get a little sympathy! Most days I relish being a Stage 4 Undercover Badass but a little pinch of sympathy would be nice too! Can anyone relate

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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    I hear you on many fronts - being in the closet about mets . . . And the few people who know having unrealistic expectations about how much I can do, despite me taking on an insane amount as it is. Sometimes people don't realize how hard it is when we make it look easy to handle. Seriously.

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  • Scwilly
    Scwilly Member Posts: 489
    edited September 2018

    I'm with you both. People love to tell me how well I look, when in fact I'm knackered and fed up with being constantly under par and feeling I will never be 'normal'. I know my Dh does this, I think, to reassure himself He's not one to talk about how he feels about my illness. Some days I just want time off and not to be ill and not have people comment on how I am. I am very bored with all of this!


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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2018

    √ Check!

    Can't begin to emphasize what JFL wrote enough. People still expect me to wait on them hand and foot, prepare fancy meals, and have enough energy to be entertaining. I kept that up for years, but 8 years in, I am getting a little cranky about it. In fact, I am learning how to say 'no,' but only once in a while. And I am not "in the closet" anymore!

    *susan*

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  • skyfly
    skyfly Member Posts: 85
    edited September 2018

    I’m sorry that your husband said that! Bleh sometimes I guess people with resolve, independence and the apperance of “having it all together” have their difficulties taken for granted. Totally lame. I hope that he just had a brain lapse and apologizes pro

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  • mikainsb
    mikainsb Member Posts: 38
    edited September 2018

    I am 41 and still working, three years into metastatic. No one at work knows about my illness which I generally prefer because I HATE when people look at me with "sad eyes." But every now and then I regret the decision not to tell people what is going on. I need people to cut me some slack. I know I was late on this assignment or that... but if you only knew how crappy I felt or how much I was worrying about that next scan or the fact that I spent hours and hours on the phone with insurance, it would make sense.

    I simply can't imagine people knowing about treatment and not comprehending that you can't do it all.

    I, as I am sure you too Larkin, would much prefer to go to the airport than to chemo!

    I am so sorry you did not receive a more supportive response. Wouldn't it have been nice if DH said, "Oh, that's right. Well, gosh, I am sorry I can't go to chemo for you and you go to the airport for this." I can only hope that the statement DH made was a poorly phrased equal frustration that cancer is part of your life now.

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  • pajim
    pajim Member Posts: 2,785
    edited September 2018

    I have sympathy. Lots of sympathy. When you look well people expect you to BE well. And generally I am well. I've cut back on 'stuff' in ways most people can't see. I'm partially in the closet.

    I do look fondly back on the Stage 3 days when I had chemo/surg/rads. Everyone at work thought I was superwoman because I came to work. I wanted to and I have a desk job so it wasn't hard. They're doctors [non-oncologists] so they looked on in awe. I wasn't superwoman then and I'm not now but the attitude was nice!

    I hope your husband just had a brain fart. If you have chemo every Friday he should know how it affects you. Maybe you need to make that more clear? "Each Friday night someone else needs to cook because I feel like crap after chemo?"

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  • Larkin
    Larkin Member Posts: 58
    edited September 2018

    I’m so happy to see,your responses. My husband is driving to the airport today and will bring dinner whenever I ask. I think he really can’t/won’t grasp the fatal nature of my situation and honestly, while I do look good and feel good generally who wants to deal with that. I mean, we have done all the paperwork kind of stuff and got our affairs in order but its generally nice to be “normal” and not the poor pitiful cancer patient that never gets asked for favors and who becomes set aside. I hate the pity but at the same time wouldn’t mind a little sympathy sometimes lol! The struggle is real

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  • finallyoverit
    finallyoverit Member Posts: 382
    edited September 2018

    I’m with you ladies. I don’t have a husband, but totally understand the “you look well so you must be well” feeling. Not many people know of my advanced dx (more now because I was betrayed but that is another story).

    For the most part, I enjoy people not knowing but damn to hell those who do that don’t take what I’m going though into account. It’s not always the physical fatigue (which, let’s face is it, is never ending) but the mental fatigue. It is NOT easy dealing with the mental part of a stage iv diagnosis.

    I sure hope your husband came to his senses.

    We get it

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  • jobur
    jobur Member Posts: 726
    edited September 2018

    Thank you Larkin, for your vent on this topic, and to all who posted and took the words right out of my brain!  Yes, I am doing wonderfully well for a stage 4 cancer patient, but a little acknowledgement of all we go through would be welcome. Like others who responded, I am still mostly in the closet, but even those who know don't seem to realize I am not the woman I was before mbc. I usually keep my compaints to myself, but when I do mention them to my DH I get the response, "oh I have that too". Even my mo chalks up any se's I mention to aging. I am "only" 61 for goodness sake!  And the thoughts about treatments only getting worse from here on out scares the crap out of me. What will happen when I can't do all the things I am still able to do now? 

    No one likes to be pitied, but a bit of sympathy and understanding would be nice sometimes. I guess this forum is the one place we can count on one another to provide it.

    Thanks and blessings to all.


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  • KatyK
    KatyK Member Posts: 248
    edited September 2018

    Yep, totally relate to these feelings. A year after my stage IV diagnosis I’m doing quite good but fearful of the future. This diagnosis is mental gymnastics on a daily basis. My DH is very supportive, thank goodness. But unless you are living this, no one really gets how freakin hard this is

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    this is an interesting topic! I grapple with sharing or not sharing/disclosing all the time! One of my Onco docs said, “well you wouldn’t go around telling everyone you have diabetes, so why go around telling people you have MBC?” It was helpful and continues to be helpful to hear.

    But on the other hand, yes some days are harder. I have my own private medical practice and so I dont share my info with my patients. But I’ve been incredibly open with most people in my circle since day one. For the most part, everyone just continues to tell me how amazingly well I am doing and look! It is a wacky dichotomy!!! I am VERY glad that people around me know - so I can pull the C card whenever necessary without guilt or anyone getting upset. It’s fantaetic!!

    I also get told sometimes by loved ones how exhausted I look - which doesn’t always feel amazing to hear 😂 it’s not a compliment! I think they say it outta concern rather than anything else.

    I’m about to go on a Tinder date in a couple hours (Im 41 and single here). The big question is, at what point in dating someone do I share this news. That’s a tough one!!!

    Wish me luck!!!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2018

    I hear what you’re saying! Let me first say that I am not on chemo and I ditched the husband 13 years ago (23 years of abuse was enough!). However, I‘ve been stage IV for 7 years and despite working full time and looking “normal” , it does wear one down. Unlike many, I am totally open about my mbc. No rumors, gossip or looks of pity. I set the tone and I encourage anyone who has questions about my situation to ask me directly and not feed the rumor mill. It’s worked quite well, perhaps too well. I certainly don’t want anyone to dwell on my mbc, but I don’t want them to completely forget either. Take care

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2018

    I, too, relate. I'm learning to say no. It's hard when you are used to being someone people count on, or when friends want you to join them but you just would rather stay home and read a book. I'm 7 years our with stage 4, and it's now in liver as well as bones, and of course treatments are constant. My friends know this, but it's amazing how they still expect me to have the energy I've always had. I dread the open invitation like, "Let's plan to get together next week. What day is good for you? " I know I should feel grateful that they care, and I am, but often I want to say," No day is good, sorry."

    A week with no doctor's appointments is a good week, so I need to guard my time. If I have a couple of appointments, and then accept social invitations that I'm lukewarm on accepting, I start to feel like I have lost agency in my life. So I say no more often and I try to only do the things I really want (or need) to do. It sounds selfish, but I need that right now. My husband is supportive and does seem to get it most of the time, and I truly do appreciate that.

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2018

    I’ve been open with my boss, the staff I manage, and the colleagues I work most closely with about my dx and the accommodations I need to continue working and living. Like xbrngirl, I set the tone and have told them to treat me as they did before and to trust that I’ll speak up when I need to. For example, on scan days, I don’t take any meetings afterward because the barium makes me so sick to my stomach. I leave early when I need to. I decline after work events unless it’s important that I attend for a specific reason. It’s nice to be open and I’m lucky to work with folks who do care.



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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    date went well! Always a somewhat bizarre experience, MBC or no MBC!


    One thing I’m grappling with disclosing is that part of me wants to write a blog post for my medical practice that shares how I can understand what having a cancer diagnosis is like...so that if people are considering coming to me for care, that they may be drawn to the fact that I understand on a personal level about cancer. But then I am not sure I want to go so public...I do have to say that the couple of women out in the public eye and on this site who share their MBC journey and how they are thriving many years into diagnosis are really inspiring to me. And I wonder if I can be part of that hope and inspiration as well as an advocate for this diagnosis!!!???
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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2018

    LovefromPhilly,

    One of the unexpected results of my being open about mbc is that several parents and staff at my school have come to me when they were dx’ed. I’ve been honored to lend them support and a shoulder to cry on if needed. A cancer dx is devastating and can be isolating. It feels like I’m doing some good and I’m glad others feel comfortable coming to me

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    Here is a pic my tinder date took of me tonight - had fun, not sure I'm super into him but ahhh who knows...I love my me time and he was saying he wants kids...I am infertile due to Lupron induced medical menopause...what an odd time to be in this bldy! (And I did not disclose my medical info!)

    image

    xbrnxgrl yes! I still feel soooo isolated in that I know only two people in the whole Philly area with the same diagnosis! One I stalked for a little while but she wasn't into it and the other was a lovely woman my age who we had lunch one time but since have lost touch - I've tried to get together with her but I just don't think that she feels it is important to have close contact as much as I would have liked. And I'm not gonna push it because it's not my nature too. I found both those women through Facebook and otherwise I haven't connected with anyone physically (in real life) to get together and just shoot the breeze about it all.

    I'm a huge believer in supporting one another. If I can be there for someone else who is going through the hellish nightmare of a cancer diagnosis and offer some light at the end of the tunnel, that would be an amazing honor!!

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited September 2018

    LovefromPhilly, gorgeous! Glad you had a nice date.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2018

    Great pic, LovefromPhilly !!!   Love your hair !!!   I lost my hair with the chemo doses I had and it came back in curly!!!  Kind of nice to have curly hair now.

    Chiming in on the conversation-   I am very open about my diagnosis.  My co-workers held a benefit for me when I was first diagnosed ( summer/fall 2017 ) with Breast Cancer. We then thought it was Stage 2, and didn't know of the MBC.   Of course, the workplace then knew about the diagnosis along with my close friends and church members since word got around about the benefit that was planned.  I am ok with people knowing about the MBC and I update them of the condition and treatments when people ask.  I know they care and are concerned.  

    What bothers me is that people tell me I look sooo good.  I have always been small framed and I have gained weight with the drug induced menopause.  And with my curly hair now.  People say I look "healthy".  They don't get it.  They don't understand the pains from the A/I meds and the bone mets.  They don't get the "sick" feeling I have.  I told my MO about the "sick" feeling, not nausea, just "sick".  My MO said that hormones play a big part in our bodies and we are suppressing all of my hormones with the Lupron and Letrozole.  Also, it is not "normal" to be walking around with our white counts so low---1.8 WBC and 1000 ANC at my last blood test and that is  good numbers for me.  People don't understand the mental havoc that MBC plays in our lives.  I might "look good" but I am not.  

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  • Iwrite
    Iwrite Member Posts: 870
    edited September 2018

    Lovefrom Philly - You look lovely! So glad you had a nice date. I hate that cancer has taken options away from you. If it's any consolation my DH seldom knows what I'm thinking. Same as first dates. AND...yes it is weird to be in a body that has been overtaken by an alien.

    I kept things under wraps for two years and now disclose it occasionally, if needed. I expect no one outside of metsers to "get it." Actually I've been known to mess with folks when they start going on and on about trivial aggravations in their lives..."Yeah, it really sucks that someone was annoying you. I'd hate to have problems like that."

    Feeling sick is interesting, Candy. I hadn't thought about how the weird counts impact our feeling of wellbeing, but it makes sense.

    Sarcasm is seldom the best answer, but some days, that and lower expectations are all I have. Living alone and being retired for the past few months has reminded me how much I fake it with others. I suspect I will continue to fake it with those I love. These days joy comes from being outdoors and soaking in all the beauty around me. Sunshine, mountains, and fresh air rarely disappoint.


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2018

    lwrite,

    I don’t have the expectation that others will “get” what it’s like to live with mbc. Most of the time, even if they say something that rubs me the wrong way, I know they mean well. I hope they never have the personal experience of dealing with mbc

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    thanks everyone!!! I’m trying to be and feel as “normal” as possible! So true about being taken over by an alien! I love thinking about it that way!

    Lately I’ve been feeling so normal aside from the hot flashes, anemia and sore joints from the AI, I have been feeling incredibly well and energized compared to how I was feeling last year at the start of treatment. It makes me wonder if I could potentially be cancer free and NEAD for the rest of my life! I would love for that to be the case.

    I don’t want to be ruled by this diagnosis but it also feels sometimes like it is controlling my life to some extent (doctors appointments and the SEs of treatment).

    I have this mixed emotional need of being both treated normally and also at times needing sympathy. It’s a funky line to walk!
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  • Crazeejane
    Crazeejane Member Posts: 51
    edited September 2018

    I have been really down in the dumps the last few days because of the fact that everything is so unknown. I've been on my regimen of meds for a little over a week now and it's just depressing to me. 2 months ago I wasn't on anything except for maybe some Tylenol every now and then. Now I take 5 pills every day and 6 on Mondays. I always knew I would probably end up with the big "C" since it runs rampant in my family like wild fire but I had hoped it wouldn't be till way later in my life. I never tell anyone how I truly feel about all of this because I honestly feel like they just wouldn't understand and would just think I'm being a whiner. And I also don't say anything because I am trying so hard to stay strong for my kiddos and my husband. I just don't want them to worry ya know? What I wouldn't give to just have my old pre cancer life back. Am I wrong for how I feel? Being told from the get go that you have incurable cancer just really sucks....and treatments forever....it just really takes the wind out of a persons sails. I smile when I am out and about but when I am alone, sometimes I just want to cry and get angry.

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2018

    Crazeejane-

    No, you are not wrong in how you feel.  This was a huge blow to you, even though cancer runs in your family and deep down you thought you may some day get it.  I think it is normal to want our precancer life back.  I do. And I am 1 yr into this now.  I am sorry I cannot give you advise about 'staying strong' for your kids and husband.  I am single and wish I had a life partner to share this with---someone I could cry with and someone to be there to share the burden.  I have never been married so I don't know how it works, but I would like to think that is how it should be. I think it is normal and healthy to let it out---cry, scream, throw something.  Keep posting here.  I find that as I type I am venting my thoughts and getting them out in the open.  It helps.  And no question is off limits.  We are here to help each other.

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  • Crazeejane
    Crazeejane Member Posts: 51
    edited September 2018

    Candy-678 Thank you for your kind words. It is so nice to have this place to be able to release my feelings and talk with others who are going through the motions as well. It truly does help me not feel so alone in all of this. I hope you had a nice weekend. Mine went by way to fast as they usually do. It's back to work tomorrow night for this lady!!!

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  • Sue2009
    Sue2009 Member Posts: 228
    edited September 2018

    ahh, this thread has struck a major cord for me.Dr Philly, u do look beautiful. My MO also has cancer & told me from day one. We actually met when I was in HS & volunteering in an ER he was doing part of his residency. Then we ran into each other when I was in college & he in private practice. 30 years later, he is my 4th MO.

    I was working as an RN in hospital, so no keeping secrets from colleagues when initially Dx. Hated when I walked in lounge & conversations abruptly stopped. I hit it head on back then. 4 yrs later I went on disability & no longer shared info. People thought I was cured. Amazing how little people understand about MBC.

    I know we bring it on ourselves as we try to be strong, esp'ly for our children, mine were 13, 14, 17, 19, 21 & 24 at time of Dx. Now they are 21-33 yrs. I am so glad I have been around for their major accomplishments so far. Most do not want to talk about my illness, my 30 y/o son, now an MD is very supportive of any of my choices. Liver mets since June is dragging me down . Not sure how long ago, but my DH finally gets how bad I feel & treats me like a queen.

    Still going to keep info to myself, but my closed friends & family get it & I appreciate their calls & concern. Sue.

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  • KSkier
    KSkier Member Posts: 467
    edited October 2018

    Nailed it.

    Yep, playing cool just kicks us in the ass. Ten years of still making it happen for my family - the more I do chemo the more people just expect me to keep plugging away at at.

    I'm a badass too, but sometimes it sure would be nice to have someone take care of something for me.

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  • Kimchee
    Kimchee Member Posts: 105
    edited November 2018

    This thread needs to keep going . I as well act like nothing is wrong around people , but I'm scared as sh#t and have no one to talk to .I have been through so many different types of chemo and I'm on Halavan now and tumor marker rising . Damn it why cant they find something to help us ?!

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited November 2018

    Also, I’ll add that I look fine and hate when people ask how I am. Only close family know the extent of what’s going on and even then I’m keeping some things to myself. Why add to their stress and worry? However, when my fiancé comes home and complains about how tired he is or how sore he is from the gym I just internally say he has no idea what tired, sore or pain feels like. I don’t think it’s fair to think like that, but I can’t help it. My tiredness and pain/soreness are 24/7 (nothing unbearable), and his are not or they are self induced. I think I’ve become jaded. No one my age gets it. I had a friend tell me she can’t imagine me dying in the next few years because I look fine. Sigh
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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited November 2018

    MBC is a recurrence for me. I was first diag. in 2003 with Stage 3. Last year it came back. During the first year I was acting like stoic and just trying to be normal. I heard all the comments about you look good wink wink, not bald, frail, skinny, grey and looking like death.

    After three surgeries on my spine and a full hysterectomy this past year; sometime in July 2018 I started being brutally honest with people who asked and answered the question, "you're alright now? in remission? you can beat this you did before right? I started answering with the truth which is such a horrible answer that people look at me mouth agape as if I just dropped an "F" bomb. NO I'm not alright. I have MBC there's no cure, I take strong drugs to kill tumors. I take nuclear medicine for a PET scan. I have a port. I'm going to die I just don't know when. There's no cure just medicine to prolong my life, maybe. Now what was it you wanted to say?

    Tanya

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