A place to talk death and dying issues
Comments
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exbrnxgrl, that was an interesting comment someone made to you about NOT posting about how well you were doing, as that could make Stage IV seem like not a big deal. Wow. It seems like if you could bring someone hope, then your comment would be very valuable.
Not one of us has a guarantee of "how long" we get, but why shouldn't we hear the positives along with the negatives. I don't want to be Pollyanna, but I also don't want to be Debbie Downer. On the good days, it's wonderful to share the good news with those here. On the lousy days, it's good to share how lousy I feel and get support from those in similar circumstances.
The only thing I hesitate to share is with a newbie Stage I or II or someone who is waiting for test results is that I am now Stage IV. To my fellow Stage IV's? Rant on, I say!
Carol (I'm loving this rain, by the way. We don't get much of it in San Diego.)
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sunshine,
It’s only been the past 5 years, IMO, that long term survivors have become more of a presence on BCO. Prior to that there were very few and I was a bit of an oddity as I posted quite freely about a stage IV experience that was far from what most were experiencing. I did not intend to minimize stage IV or diminish the experience of others. I just wanted to document my experience! I am so glad that with the advent of treatments that didn’t exist 10 years ago more of us are living longer and I no longer have to hide my light but I still deal with guilt. I am thrilled that we’ve come to a point where there are more of us living longer and better. Not enough of us, of course, but at least no one is urging me to be silent anymore!
* I remember this very clearly because it really hurt me. I was also asked by someone on the bone mets thread to start my own thread since I wasn’t reallyhaving problems. I was stunned! She later deleted her post but I never felt comfortable on the bone mets thread after that. Ah, more guilt over doing well despite the fact that none of us have much control over our bc. Yep, it still stings.
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Being a member of the 10+ Club is unfortunate because, as exbrnxgrl puts it, we are waiting for the other shoe to drop.
I have had a myriad of serious side effects since diagnosed in 2008, day one. I had my breast amputated, and it's no fun having a prosthetic or implant, no matter what anyone says. Add to that the radiation, daily anastrazole, and chemo every three weeks.
I am losing my jaw, by increments, to a cancer drug side effect. I stopped it after 10 years and little by little it is taking its toll on my health and quality of life, so now I have to worry about the consequences of not taking that drug.
As exbrnxgrl has said, people sometimes don't want to hear how well you're doing. They feel you are bragging while they are suffering. I have learned to condition my responses when posting or chatting. Those with lesser stages also do not understand.
Yes, I feel very fortunate that I have had more time and enjoyment with my family. They, however, do not realize my pain and depression every day. I cannot drag them down with me. By the way, I'm on Prozac as well.
Sorry if I sound upset, but I had some discouraging news yesterday during chemo and my onc appointment. I may live longer with cancer than anyone else, but the rest of my body is slowly falling apart and I have that to face in my future.
Please know that I pray (in my own way) for all of us. I hope all of you can be members of the 10+ Club, and maybe the 20+ Club in the future!
Love, Anna
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amontro,
Big hugs! Hoping you can keep that body fairly intact for many more years.
Just as there are quite a few variations on bc at earlier stages, stage IV is not just one disease where everyone follows the same path. I am eternally grateful that most bco members now understand this and I hope no one is made to feel bad about doing well ever again
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I was just thinking that breast cancer is really at least 4 diff diseases so sometimes it really is hard to relate to each other. There are huge differences in outcomes and prognosis by hormone markers, grade and location of mets. I think I know only 1 person who is TN with grade 3 visceral mets at dx who has made it past 5 yrs. My agency still says a year or less for my subtype (they'll need to get that updated as immunotherapy + chemo is buying most tnbcs approx 8-12 mos more)
I'm thinkg of more generic cancer groups where someone with a rapid deadly glioma would struggle trying to find common ground with someone with an indolent prostate cancer that will not shorten their lifespan. Some of our experiences are so vastly different that even tho we're all lumped into the stage 4 breast ca jar, we're really not very similar. I think some friction is unfortunately inevitable.
Unpleasant bare honesty from me:
I don't view other people's experiences with cancer as giving me hope or inspiration - which is often promoted as a way to look at outliers - because I don't think they've found some magic tx. So it's just luck and you know what, honestly I wish I would be a good human and be thrilled for someone with a good long run of luck but often I'm jealous and angry and bitter at the unfairness of it all. And holidays make everything a thousand times worse
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moth,
I don’t view myself as an inspiration or vessel of hope for others, mainly for the reason you stated, luck. From what I can tell so far that’s the only real explanation for my survival. I do realize that others view me that way sometimes by the pm’s I receive asking what I’ve “done”. They’re inevitably disappointed when I reveal I don’t do anything beyond what my mo has planned (besides cannabis, which does not cure cancer!). i appreciate your honesty and agree about the feeling of unfairness but I have never believed nor was I promised that life would be fair. Bitter and jealous have never been part of my personality but I understand how it can be for some. I don’t celebrate Christmas but I hope you find some peace during this holiday season.
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xbrnxgrl and moth -
Thanks for the responses. I am still sorting out what my onc told me yesterday.
I was told at my denovo diagnosis that I didn't have long to live. Imagine my surprise living this long after. Some people and family used to think I was "cured" and after a few years, they stopped caring. Others used to tell me how great I looked and when was I going to end treatment and that I can "beat this". I used to feel like a fraud. (BTW - did I mention that I had about 17 lymph nodes removed with the mx?)
So I went my merry way all these years being upbeat and "positive" so I wouldn't make anyone feel bad that I was terminal. Now that I'm fielding side effects, I have to have people understand how I really feel because I need the support.
xbrnxgrl, as you know, it doesn't help not to wear your heart on your sleeve. I wanted to give other stage 4 women hope, too, just by the length of time that I lasted after first diagnoses, and that backfired in some cases.
moth, go ahead and feel angry and bitter. I understand. I'm getting ready right now waiting for my granddaughter to pick me up for a family gathering at my daughter's. I'm not telling them how I feel today.
As I said, I'm sorry I've come across upset, but I have a lot to think about. You guys responded to my post and that alone is helping me make my way to the gathering.
Talk to you later.
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amontro,
Do not apologize for coming across as upset! Mbc is really just a total mind fu*k regardless of how one is doing.
My older dd has trouble acknowledging that I’m stage IV. Every time she hears me mention it she sayssomething like, “But you’re fine, right?” She has never acknowledged that “fine” is not cured and that I have mbc. I think this is born of her fears but I wish she would at least acknowledge my situation. I hope she will come to a better understanding eventually.
I do feel quite well most of the time but never shielded others from the reality of mbc. How they choose to deal with it is not my problem.
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I totally get everything you all are saying.
Anna, I’m sorry you’re feeling sad and having issues. You have every right to place your feelings here. I am sending you a virtual hug.
I sit here almost daily in amazement that I’m still here. Six years without knowing it was there and now three years in my stomach. People with it in their organs usually don’t last as long. I think Xeloda is working, though, so I don’t feel I’m close. I’ve had this over eight years with three in my stomach. I’m so grateful. I am very fatigued most days and appreciate the days I have some energy.
I have to say when I don’t feel well and I’m not doing good, I don’t get upset at all hearing someone is doing well. I’ve gone through the anger that I won’t be here and have come to a reality, but I’m also older and my child is grown. I’m sad I won’t see my grandson into adulthood, but there are many who never got to meet their grandchildren. I only wish the young didn’t have to suffer with this.
Exbrnxgirl, I don’t talk a lot to my daughter about it either. I think she would be okay if I did, but I know I probably had cancer in my 40s without knowing, and I don’t want her to worry about that right now. She also has the Chek2 gene from my husband’s side, so I worry about her. I would take everything thrown at me to keep her from ever having to face anything like this.
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KBL,
I'm not trying to keep my dd from worrying. She is 37 but it's her desire to avoid the reality of my condition that worries me. She simply can't accept the reality of stage IV. She always points out lower stage women who have lived for over 20 years and compares me to them. My efforts to explain why my situation is very different from a stage I patient seems to elude her or more likely she doesn't want to think about the reality. My younger dd is 31. She knows every minute detail about my mbc, loves to go to doctors appts. with me and is very aware of what stage IV is. She loves to watch medical stuff too. Our kids can be so different!Speaking of grandchildren, my older dd announced her pregnancy 3 months after my dx. That little grand baby will be 10 in March. I never imagined that I would live long enough to see that but lo and behold, here I am!
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I agree, children can be so different. I only have the one, but I’m one of five siblings, and, boy, are we different. That’s so awesome your grandson is going to be 10. I told my daughter I would rather go before he can remember me so he doesn’t hurt when I go. That’s kind of selfish on my part, but I think I’m changing my tune. I’d like to live as long as I can to watch him grow. I am grateful
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Oh, please let your grandson remember you! My grandmother died from bc when I was about 5 or 6. I don’t have a lot of memories of her but the ones I have are very special to me even now! I had a grandfather who died when I was 6 months old so I have no memoryof him and that still makes me sad. My older granddaughter is the one turning 10. My younger two, children of younger dd are 5 (boy) and 3 (girl).
If you celebrate Christmas have a very merry one!
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I think this is all very confusing and difficult and a crapshoot also. I do think a lot of my anxiety comes from how my early death will affect my kids- my mother died when I was 60 and I was bereft!
It is hard to constantly be waiting for the other shoe to drop- I do remind myself that so many lovely people have it worse than me and I am heartbroken about the young people! It is so crummy and I didn’t have to worry about cancer when my kids were young- sheesh!
I do remember when I was first diagnosed with stage 4, I told my mother’s good friend who kept in touch with me after my mom died and she hugged me and said “oh, that’s a shame. I’m sorry. Let’s have lunch” and preceded to her kitchen. I felt like- ok, she is treating me like life goes on regardless and I am the same valuable person and it was so soothing compared to rejection, freak out- whatever other responses people have. And perhaps that is why we like to talk to each other or 90 year olds
Moth- so many hugs for you- I get it
Have a lovely I hope visit with your families- I appreciate all of you
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Caryn and Kris -
Thank you for your support. I just got back from my family gathering and I'm not ashamed to say I used the cancer card to leave early. Too many people, and an early morning for me.
moth -
I forgot to mention that I don't seem to be bothered by the newbies getting more advanced treatment than I had in the prehistoric era. Herceptin was the new drug at the time and it worked for me,, then and currently. The new Stage 4 gals have options which include saving the breast, saving the nipple and other treatments besides chemo. My mx was radical and I begged to at least save the nipple - no dice. My mets are in my lungs and spine and I and I worked for 8 years more until retiring 5 years ago.
Many years back, I may have felt as you did, but I find that I am more than content that our sisters have more advantages than I.
I am sending you love.
- Anna
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I'm so sorry I assumed your grandbaby was a boy. I read that wrong when you talked about her. My dad died when my daughter was 5. Her other grandad when she was just 10 months old. I keep meaning to ask my daughter what she remembers of my dad. Whenever we watch my grandson, when my daughter drops him off, he says, '“Mommy, go." It's so cute. He absolutely loves being with us, and I love him beyond measure. I do celebrate Christmas, and Merry Christmas to you as well if you celebrate.
Anna, I'm glad you got to leave when you wanted to.
Nkb, I’m sorry you lost your mom. I was 48 when my mom passed and only 33 when I lost my dad in a freak accident. I was the youngest of five, so I got the least amount of time with them. I think I took comfort when my mom passed because she was suffering with different ailments and kept saying she wanted to go home, meaning heaven. I think she really missed my dad. I miss them every day. I have a really hard time thinking of the young women who pass when their children are young.
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moth, I agree with you that even though we're all MBC, it's so different for each of us.I also get jealous and angry that some have done so well and made it so long, but to those of you in that situation, my anger is not at you. And I wouldn't want my feelings to stop you from sharing your happiness, luck, or whatever else. Your feelings matter too and you should be able to celebrate the positive. I do look to you 10+ people as a sign of hope but I also keep in mind that odds aren't in my favor so I don't rely on having 10 more years.
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amontro - thank you for sharing your experience. This is how we learn from each other. I'm sorry you've had bad news from your MO recently, and I hope there is a new treatment plan to address it.
I've never been bitter about my dx, but I certainly understand it and I'm very early in treatment (that is going well), so maybe that will change. I try to look at it as "shit happens" and not dwell on the negatives. I keep thinking of the Russian spy in the movie Bridge of Spies who just doesn't seem to be too upset about a very upsetting situation. When asked about it he says, "Would it help?" Kind of stupid, maybe, but getting all torqued up about my bad news is not my nature. Now, if it were my kids? Totally different story.
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kris , given contemporary treatment advances i thjnk you have good hances to go 10 years. Cleopatra study found median survival between 4 and 5 years and they did not have kadcyla or enhertu back then. So not sure why you are so negative.
Amontro , you could have implant reconstruction - I had the same full mastectomy and radiotherapy and then had expander placement ex hanged for implant - far easier surgeries than mastectomy and so worth it !
I wear normal clothes I do not feel conscious .
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Anotherone, I want to say this nicely, not sure it will come out that way, but when I was diagnosed in my early fifties, if someone said, “oh you could probably get ten years with your diagnosis, not sure why you're so negative" I'd be rather insulted. Kris has every right to feel angry, upset or any other negative emotion that has come from having mbc. She is still very new to the diagnosis. It is life changing and a lot to process. None of us has to keep positive if we don’t want to.
I'm 11 years living with mbc. The disease has taken so many wonderful women who were members of this forum which makes me very sad, but I do not feel any guilt that I am still here. I did not do anything to cause them to have mbc. I also do not believe that some spiritual deity in the sky is making the decision to spare me and take someone else instead, as if there's a daily quota of how many with mbc are supposed to enter them pearly gates.
I have a different perspective on mbc now than I did the first x number of years after diagnosis. Mbc is still a challenge but I am deeply grateful to have had this time to work on living more meaningfully and continuing to experience the fullness of life within the restrictions of mbc.
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Its been a bit since I've contributed to this thread, I posted here a lot in my beginning months/year of Stage IV - I had some things I needed to work out and letting that all spill out in this thread helped a lot. I greatly encourage those new to use the space/continue use the space to work out fears/etc.
My dear Cakes, I'm so frustrated you had to go through all that mess at the funeral home alone. People just don't get it, even apparently people who deal with it all the time. You say Stage IV to people and they either give you a look of horror or they give you that dazed and confused look or they may just shoot you the old "You'll be just fine, you'll see" or similar slogan believing the right combination of willpower and mantras is curative. Its difficult getting people to understand what a terminal illness means but when your sitting in the place designed to deal with such matters and its glossed over especially when your dealing with Stage IV for two, I'd of broke down too and had a good holler in the car afterwards. I'm really proud of you how you handled it like a boss in the midst of wanting to tear hair. Isn't it kinda our MO these days to almost have to learn to deal with everything like boss while wanting to tear our hair out? Dr's, Insurance, Medical Records,...the list always seems to grow.
I have power of attorney documents signed as well as DNR/DNI and a living will, I did most of this in my first few months of dx. I wrote an outline for songs I'd like at a memorial, instructions on burial and where (no wake, no funeral home visitation - direct burial/no embalming - just wrap me in a sheet, cover me with flowers and put me in a box, viola). I kinda want simple - I'm actually an introvert that writes like an extrovert- feel like I should make a quiet exit, no big hullabaloo, I'm just an ordinary lady - no need for frills or unnecessary expense or pomp and circumstance. It was difficult writing it all out tho. I haven't entered a funeral home yet nor picked a plot in the bone yard yet - i probably won't. I just gave generalities on where/how/in what to be taken and run with - which is what i think my family ultimately wants - basic direction and guidance.
Indeed I am guilty too of comparing signatures and timelines - I believe all of us have done that to give a general idea. I know with my age being young and the length of time between original dx and metastatic recurrence being so short it doesn't have 5 yrs or beyond looking very promising. I know certain subtypes/mets locations are glorified in that they have more options/possibly better survival outcomes etc than others- but whats the point of more options if the tolerability isn't always the greatest and despite having a 'good' mets life is difficult. MBC to me is so individualized even if the prognosis is common. Trying hard to be gentle about what I'm saying as a general comment. So to me, we're all in the same boat. Its a luck of the draw whom the drugs favor - there just isn't any control any of us have over who responds, who doesn't - who gets decades - who gets months - we just don't know. There is no shame in being fearful just as there is no shame in celebrating beating the odds as it were. For me, it isn't necessarily about inspiration or hope because I've planted those two things in other ground. For me its understanding. Our section has been invaluable to me in terms of understanding, for it can be found here in spades where its virtually impossible to find it in the cancer naive world. You cannot be as open and honest as you can here. And even if you don't come right out and say it, you can feel a collective nod that just gets it. For no matter where we are in terms of time living with this disease we all know what scanxiety feels like, we know what staring at the ceiling at 2am feels like, we know the pain,concern, and worry that comes when we see another poster ripped from among us.
It took me about 6 months post metastatic dx to take me first deep breath. Took me 6 months later to take my second. Every month there after I've allowed myself mini deep breaths, being cautious but not as wired for lack of a better word as I was in the beginning. I felt like an electrical pole with all the emotions and anxiety running through me in the beginning only because I wasn't prepared to hear that kinda news so quickly and especially not at 37. To all newbies I'd say, be gentle, allow your mind and body to adjust however long it takes and vent as much as you need to. No one minds and we get it.
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Anotherone - I feel it's too late for re-reconstruction. I'll be 80 in two months and I am not in the mood to date. I have learned to be happy with my body nowadays.
Rabbit - You reminded me to add that, in addition to funeral and burial planning, I also lined up powers-of-attorney, do-not-resuscitate, and a will leaving my old belongings and a 2004 Buick to my family who will probably have to hire a dumpster to get rid of it all!
All of you guys mean so much to me. Yes, it does help not to go through this alone.
Blessings!
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ah , divine, my phrase about negativity was related ONLY to the statement that odds are not in kris's favour to have 10 years. I looked at odds and realised that they are indicating about the time .
Of course I did not mean that phrase in general - for God's sake, one is diagnosed with life ending illness ! And will be on not an easy treatment till the end of her life !
Apologies if it came across wrong.
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Anotherone- I actually try to stay positive but still try to not be unrealistic and act like it's a given that I'll get 10 years. With the median lifespan of 5 years, that statistically means my chances of making it even 5 years is 50/50.
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And, I want to add, just like many of us thought before diagnosis that "cancer happens to other people", I don't want to put my head in the sand and assume I'll be on the lucky side of things. I prefer to be an optimistic realist rather than a naive idealist (I'm not saying anyone here is a naive idealist. It's just how I would feel for myself if I didn't openly acknowledge the possibilities).
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Anna, I am shocked. After seeing you on the Zoom calls, I would never have guessed you are going to be 80. All I can say is wow!!! Seriously? Nope, I would have never guessed it.
Rabbit, cremation is going to be what I do. My brother picked a spot in a natural place in north Florida and was buried in a type of box that will disintegrate over time. It was a natural type burial. I had never heard of it before. I own some land and could be buried on it, but it will eventually be my daughter’s, and I would hate if she wanted to sell it some day and didn’t feel she could because her mother is there.
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And, I want to add, just like many of us thought before diagnosis that "cancer happens to other people", I don't want to put my head in the sand and assume I'll be on the lucky side of things. I prefer to be an optimistic realist rather than a naive idealist (I'm not saying anyone here is a naive idealist. It's just how I would feel for myself if I didn't openly acknowledge the possibilities).
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hi kris - 4-5years is without kadcyla and enhertu. With them median life expectancy is bound to be higher. Then add to it what is likely to come out in a few years time and hey presto 10 years seems logical median , not exceptional . What flaws do you see in this analysis?
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Anotherone is basing her message on the research not on false optimism or idealism. Trust the science?
Plan for the worst but hope for the best. 50/50 means you have exactly the same chance to fall on the right side of the curve as you do on the left.
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I hope this comes across correctly, but I don't understand why anyone with MBC cares what others with MBC think of their situation, if someone with MBC wants to believe that they will live for 20 or 30 years, let them, I would not dream of telling them they are living in denial or pointing out statistics on MBC to them or telling them they are giving false hope to others.
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I have a problem with false hope. I'm the tedious person who posts statistics. Far too many pts and families appear to be totally blindsided by a death which was totally predictable.
Hospice research indicates many people do not realize how close to death they are and that once they do realize it, they make changes in the care plans and activities.
More broadly I get steamed when people say things like "but I'm not planning to listen to the prognosis and I plan to live for 20 yrs" because it sounds as if those who died were just stupid fools who failed to plan it correctly. Do you see how that sounds to others? When we've lost people in their 30s who showed up to their treatments and did everything in their power but I guess they just didn't do a good enough job blocking out the prognosis or writing out their 20 yr plan. I mean, people can think that in their own heads but if someone says it, I will respond.
This is still a terminal disease.
And I've seen people with very favourable diagnosis just not respond to treatments and die very quickly. Median OS is a decent stat but I also look at the distribution and often you see the outliers at both ends.... those who have exceptional response and those who don't respond at all to anything.
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