A place to talk death and dying issues
Comments
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At the request of the moderators I will no longer be posting in this thread.
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Can I ask if they gave a reason? This is not a stage IV only thread. Maybe it should be but it's not. I appreciate posts from people of all stages. Maybe I shouldn't post here either.
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My screen shows this as being in the forum "Stage IV / Metastatic Breast Cancer ONLY.
The reason is that I am not metastatic and thus my posts might be upsetting to someone who is.
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Jaycee,
Please read the header. This thread is, indeed,in the stage IV forum and is for stage IV members only. Although I appreciate comments from all members most times, stage IV is a whole different ball of wax.
As an 8+ year stage IV member, I have always appreciated the moderators giving us a protected place on bco. I also appreciate members who understand and respect the reason whythe mods have limited participation in stage IV threads .
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runor,
I believe that you would not purposely say things that upset stage IV members. However, this has not been the case with all members prior to the mods enforcing this restriction. I am sorry that it impacts you but it seems to be a workable solution and has been for years. Every now and then this restriction is questioned but I’ve yet to see a better solution than the current one. It’s not perfect, but I appreciate those who understand and respect the mods request
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Sorry. I see that now. My two favorite threads, death and dying and the steam room, for some reason, I always assumed were "open" threads. I just don't like any kind of exclusion. But I understand it in this case.
Talk about exclusion. Did anyone see the program on the BCO main page called Mend After? A gift registry for cancer patients? Stage IV people don't "mend" and we don't have an "after." I get how it works and how it could help people of all stages, including stage IV. But could the name be more exclusionary? I assume the mods will be hanging around this thread watching for interlopers so I hope they see my objection to the name.
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Jaycee,
I’m glad you understand and though I am no fan of exclusionary practices, this is appropriate. You would be astounded to see some of what was posted in stage IV prior to this restriction. Thank you!
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Thank you to for all, every one of you for the kind replies, encouragement and insights. I am glad I was able to express to you all how I felt exactly how I wanted to for a change. For some reason I've been having alot of trouble writing out my thoughts and usually I'm pretty good at getting things down on paper. Lately, it takes me a couple hours to try and get something out depending on how much I want to say. Not to mention try and spell check it and make sure its intelligible. I keep getting words in sentences backyards or repeating words or phrases. It's weird. I did not want to lead with my age, its a crappy situation to be in regardless of age. If I'm having trouble young I cannot imagine what older ladies go through. I hate cancer, plain and simple.
JFL, my God what you have been through. I am humbled by you. Wow. I take inspiration from you and will give things a chance to try to work.
I'm on Ibrance/Aromasin, agreed to Faslodex when that fails. Maybe dabble with Xeloda pills if the HFS prospect possibility doesn't scare me too much. But no IV. As vain as it may sound, i don't want to be bald again. I've got 1 good arm to use now for blood/zometa due to lymphedema risk from having 16 nodes taken outta right arm. My port was taken out at surgery for my mastectomy, we had thought I was "done". Surprise!! I also want nice strong veins for some nice strong morphine when I need it too, as morbid as that sounds.
Tonight I think of all of us, for the crappy hand we were dealt. I know im still feeling my way around all this with only 7 months of MBC under my belt but i still know what I want and don't want in all this. I want a peaceful end on my terms. I think we all want that truthfully and ideally when the time comes. BUT in the meantime. Me and my legion of lesions are in a tug of war..until i chose to let go.
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Rabbit and JFL and other young ones- I too am horrified that this is how you are spending your 30s. I felt physically invincible going through child bearing and rearing at that age, not cancer. Rabbit- l agree that I will not die bald on chemo. but, losing your hair is not a vanity issue - it is a primal, privacy, healthy presentation to the world issue. Bald woman are feared and avoided in our world. I will say that not sharing my cancer with most people has made my QOL much better. I don't want all the bad advice, judgement and pity- I want to walk through most life like everyone else.
I don't have a port, I had a bilateral mastectomy with major lymph node dissection bilaterally. I have one vein on the left I use for every IV and good ones on the right just for blood draws- and now with your mention of saving a good vein for pain meds- will do that also. I fear pain and not knowing when to stop treatment, but, will try to be wise like my mom was- though she was 20 years older.
I have read a lot of books, talked to a few therapist friends, read lots of prospectives on this site to try to make sense of my life. I am a pollyanna type person and do believe especially for those of you who are younger- that something good will come along- a triplet possibly like happened with AIDS to make it a chronic disease. So, I hope that hanging in there will make that possible. I also think of what other people go through with cancer, MS, Parkinson's, head injuries etc and tell myself that lots of people suffer- it puts my situation in perspective- not saying that works for everyone.
Also- it took me years- but, I am trying to not think too much about what I don't have or can't plan or will miss in life. I recently read "the 5 invitations" by the co-founder of SF Zen hospice- it is not as "great" of a book as I had hoped- but, is worth getting out of the library and skimming. The first advice is "Don't wait." that is my philosophy about many decisions. (what am I waiting for?) 2.) Welcome Everything, push away nothing 3.) Bring your whole self to the experience 4.)Find a place of Rest in the middle of things 5.) Cultivate a don't know mind. I am trying to welcome more things- hang in there with people and situations that scared me before. although some times I can't tell if I am better at letting go of outcomes or just don't give a sh-- about the outcome - not sure that it matters.
I also appreciate Runor"s perspective and don't know about the history of unkindness to Stage IV people in the past.
I hope you (all) are having a good day today. you are part of my QOL and healing.
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Nkb, the zen advice is interesting. I agree with some of it. Not sure I care to welcome everything and that has to do with taking on way too much as an adult and finding power and agency in saying, I don’t have to accept this.
I’d like to hear from others on if and how they viewed death prior to getting metastatic breast cancer and how that compares to the way they view death since their diagnosis.
I always thought I would live a long life. One grandma lived to 102 and a grandfather lived to 95. Prior to mbc, I had a relationship with God and a fuzzy belief in an afterlife. Mostly I didn’t think of death often. My parents passed about 20 years ago within 9 months of each other and that was hard but I’d slowly worked through the grief.
I was in my early 50s when diagnosed from the start with mbc. I felt an immediate intense fear like never before. (I had no knowledge I’d still be here almost 9 years later). My anxiety was off the charts. I lost an innocence forever. It could be described sort of like a thick, heavy-duty, steel-encased cable that connected me to my life and loved ones on Earth was immediately severed and the only thing anchoring me here was a thin strand of thread. And someone was running around with a pair of scissors.
Over the years, to my surprise, I moved on from a religious viewpoint of death. Going to God for help and comfort felt sort of like going to my primary care physician for cancer treatment. It just wasn’t working. (May I just say, I don’t want to turn this into religious discussion, and have much respect for those whose faith is strong. I’m only sharing my experience. There are other threads about religion where one can take up the matter).
And now I think of death often, still sort of on the back burner but always aware.
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nkb,
I just want to clear up what has happened in the past on the stage IV threads.I don’t believe anyone was purposely being unkind. However, some of the comments and questions asked were, sometimes, intrusive and showed little sensitivity toward those faced with a terminal dx. Again, not on purpose, but it’s almost impossible to fully comprehend what a stage IV dx does to a person until you’ve walked in their shoes. I believed I was stage a IIB for about 6 weeks, and that was tough enough to digest. Things became totally different when my bone met was found. It was completely different than believing I was IIB.
Again, no one was intentionally rude or hurtful but stage IV patients have very different concerns and, usually, a very different perspective on breast cancer which others may not fully comprehend.
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Could someone give an example of these insensitive things said in the past by early stage people to stage IV people? I'm at a loss. I frequent lots of threads read and posted to by all stage people. There have been hurtful things said, some maybe even by me, but not of the variety alluded to here. I read stage IV threads when I was IIB and would have liked to ask questions but didn't because of the rules. I have friends and family who say insensitive things all the time but none who have had any kind of cancer. I'm just really curious.
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Thank you thank you thank you nkb. Yes, to the reasoning not wanting to die bald. I had a hard time publically with no hair. I worn my head scarves but, everyone knows why your wearing one. No one would look me in the eye when I had no hair. It felt very lonely and isolating. I had beautiful long dark brown hair before cancer down to the middle of my back. Now I just have this poofy pixie going on, I'd like to keep it thinning or not. When i was bald it was like although cancer had introduced itself to me with a arm twisting handshake, it took things happening down the line for it to sink in..baldness showed it was real, just like having my breast removed showed the cancer was real, or having a port put in for chemotherapy showed the cancer was real. I feel like cancer has taken enough from me, it can't have my hair a 2nd time. No way jose.
I spoke with a family member over the phone tonight who told me to remain positive and that a negative attitude will affect my outcome. I just agreed quietly. Thats all i had energy to do. I don't have the energy to tell someone where to shove it. I try to take the gracious, passive approach in general. I'm not a confrontational person, I try to extend grace, like id want someone to extend it to me if i said something stupid, it is hard to do sometimes in cancerland tho. While I can agree maintaining some kind of balance mentally is important for sanity's sake at this point. My positive or negative thinking has no bearing on whether my cancer cells will replicate or diminish. If i could control my outcome or manifest different realities for myself i'd be rich and cured. How come i'm not riding the gravy train with biscuit wheels cured of my legion of lesions onto my own secluded island with my eye candy of a husband by my side sipping a a nice tall cold iced tea...unsweetened....with lemon ( favorite beverage on earth sorry
). My mental thoughts have no bearing whether I'll live or die. If you have MBC your going to die, period. I cannot win an argument with my cancer cells. I've tried. They haven't listened to me yet and Tangina has yet to arrive to declare my body "clean". My pain level is increasing steadly upward since diagnosis with now being the worst its ever been does nothing to ease my thoughts. My need now to inquire after pain pills worries me, new pain in my skull I've been monitoring that's comes for about a 4 second count on the right side and then stops. Alarms me. Its been doing this for the past 4 days at least once during the day. It feels just like the mets in my back/hips pain when it comes. I will be mentioning this on the 3rd when I see my MO.
On the other side of things when I think about death. Death to me is not the end. And it is not the beginning of the end. But, it is the end of the beginning. I'm a Christian so that is where my faith lies. My view on death is the same as prior to MBC. Heaven sounds wonderful, its that whole ugly mess of getting there i'm dreading.
I echo Jaycees question.
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You're taxing my memory, Jaycee😉. Let me just say that the topic of stage IV restrictions, whether they should exist or not, comes up every few years. Opinions go both ways but, historically, the mods and stage IV members opt to maintain the restrictions.
Here are some of my personal experiences:
- Your diagnosis sounds just like mine. What did you do to go so quickly from stage IIB to stage IV ? (What did I do??? You're kidding right?)
- Here are my symptoms. Do you think I have bone mets? (I have bone mets, but I am not a doctor . How would I know?
- I'm not stage IV, but may I suggest ____________. (Fill in your favorite cure, no matter how off the wall it is)
Via pm- My age and original dx are just like yours! Can you list all of your tests/scans, treatments and what types of doctors you've seen? I want to make sure that I don't progress like you did, but I feel bad for you.
None of this is horrible but, the idea that we could have somehow prevented mets, that we can help dx others or are in a position to act as medical advisers (heck, we are pretty busy dealing with our stage IV lives!) or that we want to try an unproven cure (Hey, you're stage IV. What have you got to lose?) because we're desperate is just another bit of stress on our already stressful lives. Again, no one is intentionally trying to be insensitive, but stage IV is something that is hard to understand unless you're in it yourself.
Kudos to chrissyb for starting and supporting a thread on the stage IV forum for those worried but not diagnosed. This was in response to maintaining a protected space for stage IV members, but giving those who are worried a place as well
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Jaycee, easy - a discussion about diet and life style in the last few months. A comment of someone with a lesser stage to " just not take anything to extreme , be sensible and it will be all right".
I remember how life felt when I was stage 3 and then I did not have cancer any more and was not assumed to have it for 13 years. It does feel very different now. While before death within 5 years was about 25% chance after my diagnosis it became a certainty and those numbers are very different. After I found about Cleopatra study and my histology it stopped being a certainty and the outlook moved to much longer life expectancy in my head it feels very different again.
I feel it is as if a full body abled person was telling something about life in a wheelchair to someone who actually lives in one. I accept it is because I am tetchy in a large part but so are many of us and who can blame us ..
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Jaycee,
“Your situation is my biggest fear”. De novo right out of the gate. “Maybe others are like you and don’t know it”
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Kind of like throwing out the baby with the bath water to me. A person with stage IV could say that thing about diet and exercise, too. I just hate to loose voices that could add so much. I guess I'm in the minority. And it is "early" stage, not "lesser" stage. See? Stage IV people can say nasty shit, too.
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Ah, I forgot my favorite tale. During a previous discussion on stage IV being open to all or closed, things got a bit heated. A member felt it was very unfair that stage IV members could post anywhere, but lower stages were restricted from posting in Stage IV threads. Not a quote, but something to this effect:
If we can't post in their forum (Stage IV) let's not respond to stage IV members who post in other forums. Don't even post condolences (posting condolences is acceptable ) .
I didn even know what to say to that “charming" comment, although if memory serves me correctly, I did respond. I'm hoping members will understand and not turn this into a heated discussion. It's true that not all stage IV members agree with this policy but enough do so the policy has remained intact. Amongst the many challenges stage IV members face, this seems like a simple thing to maintain and respect.
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just since this debate started.....
“We are all equally staggered by this disease”
“We are all dying”
I think I will bow out after this post.
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I just want to say I am so thankful for this thread and everyone s openness.
Re Divines post. My grandmother lived to 98. My mother lived to 85. I have always understood that death is part of life. When I was first diagnosed at 40 I was in denial. I thought I would still see my 80s even with all the toxic crap that was being pumped into me, but no way did I think I would die from breast cancer. I went through the motions of saving\planning for retirement. I thought I made it after 17 years of being cancer free. I thought I would pass peacefully in my sleep like my grandmother.
Here I am at 58. I am no longer in denial, and understand I will probably not see 80, unless I'm one of those lucky outliers. I live a full life and try to do as much as I can. I am now grateful for those 17+ years I had between Stage 3 and 4. Many young women don't get that opportunity. It breaks my heart to see so many young women having to deal with breast cancer.
I am not afraid to die but like Rabbit I am afraid of the process.
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I am also afraid of the impact on those left behind. It breaks my heart to think of my children losing a mom at relatively young agesI lost my mom at 60 and it brought me to my knees for years.
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My sincere hope is that this doesn’t blow up again, though it has several times since I joined bco.
We are all equally staggered by this disease"
"We are all dying"
I did not see who posted the quotes above (copied from mab’s post), nor do I need to know. But as someone who spent 6 weeks believing I was lower stage, IIB and only grade 1, I can say unequivocally that a stage IV diagnosis is NOT EQUALLY as staggering as a lower stage. It is much, much , much more staggering and fraught with information, decisions, treatments etc.that lower stages do not face. Yes, we are all dying but not as quickly and as often as those who are stage IV. For lower stages to even pretend that we are going through similar experiences, especially the mental/emotional toll is pure folly IMO. I sincerely hope that lower stage women never, ever have to experience the difference.
* As many of you know, I have lived with stage IV for over 8 years. I am very lucky and fairly rare. Even I can’t imagine the nightmare that some of my stage IV friends deal with everyday. A nightmare that usually doesn’t end until they die
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nkb,
I am so sorry. I teach elementary school and we’ve had several students lose parents over the years. Yes, those we leave behind have to cope and go on with their lives but it is difficult as children do not have the emotional maturity and life skills that adults do. May children who have lost parents at a young age find the love and support they need
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I will say living in the shadow of a nightmare and living in a real time nightmare you have no chance to wake up from are incompatible and incomparable realities. The threat of death and the guarantee of death in the cancer diagnosis setting are vastly different places to be emotionally. A cancer diagnosis brings with it terror and horror, I understand the fear those in early stage can feel, I was there a short time. But for me, at Stage 4, pain isn't possibility of mets or the threat of mets those in early stage fear, its the possibility of progression and treatment failure, putting me one step closer to the grave, that's a STAGGERING difference.
With that said, while I stand by these feelings, I really don't want to see division or this thread not serve it's purpose. Cancer sucks. Let's not bite and devour one another.
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A note - nothing that rumour has written in her post has grated on me. Nothing at all. I thought it was an insightful and piercingly truthful description of emotions and thoughts. I understand people have all kinds of life limiting conditions and qol of someone without stage 4 cancer may be way worse etc. I understand you Jaycee saying it is throwing baby with the water. I understand why the rule is as it is as well. I hope nobody interpreted me using the word "lesser" in the stage context as "nasty sh.t" , I definitely know I was very happy to be in that "lesser" category when I was there and would not have thought of being classed as such as an offence. English is not my first language as you may have already guessed from the way I write hence not the best word choice.
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DivineMrsM,
My DH and I had one of our serious talks today. He said he thinks of my death every.single.day and there are days when he cannot cope emotionally- hence the antidepressant.
He said he feels like he is in mourning even before I have even died.
This incurable disease and palliative treatments are so hard on us. I hate bringing my beloved to his knees in that kind of pain while I still live. We just hold each other and sometimes I don't know what else to do.
So I think I will limit our conversations and let us both pretend to be in denial land.
I am only 3 years out. I feel like I am in the electric chair waiting for the switch. I know it is irrational, but that is how I feel. The freaking unknown of our future. Will the drugs work, when will it fail, will the next drug work, will I tolerate it..over and over.
I look in the mirror every morning, looking for yellow eyes.
Sucks.
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Anotherone, I was referring to myself with the comment about nasty sh$t. But I did look up "early stage" and it seems (depending what website you look at) that it only refers to stage I. Stages II and III seem to be out there in limbo land. As I posted in the steam room, I see cancer as a continuum, not discreet stages. And I never would have guessed that English was not your first language. Never.
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Wow. I am usually only a lurker on this thread - I skim and comment very infrequently, but I just spend the last half hour going back to about mid-November and rereading everyone's posts. Although the topics and content are emotionally difficult to read, I feel (like others have said) so grateful to have BCO and to be surrounded by such truly amazing, intelligent, articulate women. (and men, from time to time). Really.
I don't think I am usually aware that some comments are coming from "lesser stage" women, and I do find input valuable, but understand the Moderators thoughts. To echo one of the things exbrnxgrl said, the emotional difference/toll between Stage 1, 2 and 3 to Stage IV can't even be accurately articulated, at least by me. I remember very clearly finding out that I had Stage 1 cancer, and while I was extremely upset, I had no doubt at that point that I was going to be okay, and I was more concerned about the upcoming surgeries, treatments, etc.. the time involved and how it was going to affect my family. I was so naïve and was also told by my oncologist that I'd be just fine and had a very, very slim chance of it coming back. The day I found out I was Stage IV (3 years later) - worst day of my life. Air sucked out of me. I was TERRIFIED, and convinced I'd be dead in 2 years, max. Anyway - just my viewpoint but trying to underline the fact emotionally and intellectually, they are like night and day. (I think.)
Which brings me to Divine's question about death. When first diagnosed and convinced I'd be dead, again, I was terrified. I was 44, with kids in middle school and high school. I remember laying in bed staring a the ceiling for hours, thinking of all the things in their lives I was going to miss, and the fact that I wasn't going to get to meet my grandchildren, and how my death would affect my family. The process itself also horrified me. For better or worse, I have "almost" come to peace with it, and I really think a lot of it has to do with BCO and a Stage IV Facebook group that I am in, and the friendships I have developed, the feelings we have all shared, and most of all - "watching" so many women that I had gotten to know facing death so gracefully and bravely, providing us with so much insight, and then dying. You all may think I am crazy, but it almost makes me feel like "okay, if they can do it, I can do it"... and I have learned so much about HOW to face it. Now I am 52 (almost 53...I am the only person that I really know that is HAPPY about seeing another birthday!) and I do think it's weighing a little more heavily on me than it has in past years. I have been very lucky and lived a relatively normal, very active life since diagnosis, but I sort of feel like I am living on borrowed time at this point and the other shoe might drop. I am being much more intentional about getting things in order. I hope this isn't the case, and that I am wrong.
XO
Andi
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Andi, I get what you're saying about the almost being okay with the inevitable. I would say on some levels, I've learned acceptance. But not all levels!
It's helped that I've had a number of years to come to terms with many aspects of end of life. In the spring, dh and some of his coworkers took early retirement from the power plant. Wives had to go with husbands to a meeting to sign all the papers. One of his coworkers at the meeting learned that week he had stage iv pancreatic cancer. The man had been active and healthy up to that point! Four months later, he was dead. I mean, that isn't even time to catch your breath. How cheated I feel for him, his family.
So there are many different lenses through which I look at death. I am fortunate. I am not fortunate. My view is not fixed, but has evolved over the years. In May, my neighbor of 20 years, same age as me, went in to cardiac arrest on his front porch and, never recovering, died a couple days later. He, too, had been active and outgoing. Which is better, to go quickly like that or to live with the time bomb inside not knowing what to expect when? Such are the questions of life and death.
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My opinion continues to evolve, too, Divine. This week I learned arrhythmia could cause heart damage and potential “instant” death for me at some point. It sounded pretty good.
I feel fortunate to have had four years to get used to the idea of dying and work through the practical stuff. That time hasn’t made me feel blessed (another thread). It’s made me grab life and live every minute. I’ve worried less and loved my family more and learned to live without what I expected to have...a long future.
It would be great to gain some control over the dying process. I’m now comfortable refusing some tests and procedures that I’d want if MBC wasn’t the elephant in the room. Why go all in on heart repair/monitoring to save myself for a long, slow, painful decline that hurts me and my family?
AND- we know the drugs we take cause their own set of problems. How much gadolinium, contrast and radiation does it take to kill us?
At this point I just want to create some great memories, enjoy the time I get, and have a few friends left at the end.
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