A place to talk death and dying issues

Lynne

RIP Princess. So sad.

MuddlingThrough

Have any of you read good books about near-death experiences or of heaven/afterlife? I refer to serious books, not ones written for sensationalism or to make a quick buck on something trendy. Also, not based on a child's experience. It's not that I wouldn't believe them but rather that I suspect they were prompted and led, even if with the best intentions. Thanks.

illimae

Muddling, I haven’t read any books but I did have an interesting conversation last week about the subject. An intellectual and philosophical friend and I were discussing heaven vs. nothing (I think we’re just done, no afterlife) but he made some points about brain function continuing a few minutes after death and that an individuals afterlife could be whatever they want/believe/imagine it to be as our brains create imagery that we may need to cope with the transition. Interesting subject for sure.

Maire67

I just read On Life After Death by Elizabeth Kubler-Ross over the past few months. Very interesting from a Dr view. Still struggling with my ownbeliefs.

MuddlingThrough

illimae, it's very interesting for sure. I'm not on one side or the other (yet). Even if it is continued brain activity, that in itself is pretty fascinating. Why would it happen? What evolutionary function does it serve? Is it a leftover from some other neurological function? It should get some real research. Then again, if there is an afterlife, why would people in every culture report similar things, presuming their cultural expectations are different from another group's? Is everyone now 'contaminated' with the pop culture 'tunnel to bright light' and subconsciously imposes that on some natural fugue state? Very interesting. I frankly state that I hope for something beyond physical death. It seems such a waste otherwise and there are interesting electromagnetic fields etc.etc. etc. I also know we can't prove it either way but it's something to ponder. Also possibly something to bring comfort and that's a pretty good thing too. I pray and hope for more while respecting that we were given curiosity and sharp minds. I'm very skeptical of snake oil salesmen in all forms though.

Lita57

I for one believe in an afterlife. It would take too long for me to delineate some of the experiences I've had for myself and others.

We need to rethink our purpose here. If we are just BORN TO DIE, what's the effin' point of all this suffering? (I don't write off the concept of re-incarnation, either. Some of us might actually be "sent back" for a do-over or two.)

I certainly didn't ASK to come into this miserable world (miserable now b'cuz of POS POTUS), so if I transition and there's NOTHING there, that'll totally be f'd.

L

DivineMrsM

I've read a few life-after-life books but none clicked with me.

Now, before you read the following, please let me say that I respect others' beliefs and I'm not trying to sway anyone's opinion or attack any faiths. I'm only describing my own personal story. [The one "religious" affiliation I totally hate is the polygamists that follow Warren Jeffs who marry and impregnate young girls over and over.]

So, I was raised Catholic. In my 20s, I became a born-again Pentacostal and became a big believer in prayer.

Then in my 50s came mbc. I turned to my faith but wasn't getting anything from it and after awhile, I said to God, "you know, this just isn't good enough."

It may have been one of the first times, ever, in any area of my life that I took a stand for myself and said, "I need something more!"

I don't really consider it a "crisis of faith" or a "falling out" of religion. But I started to see the patriarchy of Christianity (and in society as a whole), and once I saw it, I couldn't unsee it. I see the Bible as written by men, not God, at a time when women were considered property. All these centuries later, I cannot abide by the submissive roles most religions insist women play.

This upheaval in my outlook isn't at all what I was expecting when I asked for more from God! And it's transpired over many years, not a cut and dry conclusion I've come to. It is an ongoing search for what I believe in.

It's not easy to turn away from something you've believed in and found comfort in your entire life. However, I do feel we are conditioned from birth to believe some things and not given freedom to determine for ourselves what we believe.

I do believe in a spiritual realm. I know without doubt that numerous spiritual incidents occurred in my life over time that have changed the course of my life for the better, sometimes as an answer to prayer.

So, it gets confusing. I'm still trying to "figure it out", make some sense of it.

runor

Since being diagnosed with BC, death has been on my mind a lot, as a very real possibility (because before BC I was going to live forever and death was NOT a possibility). Isn't that the thing? That we can't UNthink about death like we did before? Before it was well, maybe, if things go bad, yeah I might die, or I might not, no one really knows, I could live forever, weirder things have happened - to HOLY CRAP THIS IS IT!

I am not, as far as I know, metastatic. But that could change in the blink of an eye. We all know that. That's the thing we can't UNknow.

DivineMrsL, I also had a collapse of faith. It was completely disorienting. I thought I had it all sewed up. Knew all the answers. I worshipped the One True God. Now I know that is an excruciatingly narrow white western view as statistically, globally, my god is worshipped by a minority of people. But they don't tell you that in church. At least not in my church. I walked out of the church and I never went back.

Do I believe in a god? I don't know. Do I pray? Sometimes. But it's not to ask for things as much as to ask for the strength and grace and fearlessness to cope with the things that life is handing me. I pray for the clarity of mind to know that it's not all about me, not even my death. That those left behind will hurt long after I am gone. I pray that I can think in bigger pictures and broader strokes. I don't even now who I pray to, it just issues up and goes ... wherever. I also find myself, in moments that are good, saying (and I don't know why but I just got goose bumps now thinking about it) Oh Lord My God, when I in awesome wonder, consider all the world thy hands have made... That is my best prayer. That is me saying thank you. Not asking. Giving. That seems to be the only way I could sum up my religious beliefs right now, confused, but talking to Whoever might be listening.

As for death, I think it's kind of stupid. I mean, really. All this living and doing and working and suffering and loving and then bzzzt, out. That's just a stupid plan if you ask me. I think of the people I have loved who are gone, just gone, a living force one day and the next, a hole in my life that never gets filled in. How is that possible? It's stupid!

Then I wonder ... where was I before I was born? I'm freaked out thinking about the time I won't exist anymore when in fact there already HAS been a time I didn't exist! Prior to my birth, I did not exist ! Was I dead? No. I was ..... not here but not dead? So when my heart no longer beats, same as prior to 1963 when it was also not beating, will I be dead, or unborn, or ...WHAT?!? At this point smoke issues forth from my ears and the smell of burning electrical circuits fills the air because these thoughts blow my mind. Literally. Once upon a time I was a non-entity and I will return to non-entityness. Was I in a state of panic prior to my birth thinking oh my god, I'm dead!? Or was I thinking at all? I have no memory of thinking nor any awareness of my non-existence whatsoever. If it was thus the first time I non-existed, why would it be different the second time I non-exist? After I ponder these thoughts for a while I quit, because it's pointless and my head hurts.

I have not read many books on after death experiences. I have been reading books though on good deaths. Deaths where pain and misery do not have to be the flavour of the day. Books on the medical help that I and my family must insist on and advocate for so things are not painful and obscene. But this is different than life after death, this is how ot get through death, not what's on the other side.

Chemistry91

Heaven and Back by Dr Mary Neil is excellent.

Iwrite

The Ten Thousand Things by Robert Saltzman helped me work through a similar “I’m done” experience. Now I appreciate every day, every person, every experience instead of anticipating the hereafter. It was nice to be so certain for so long, but alas...

I am certain about the joy in today. :

MuddlingThrough

Chemistry91 and Iwrite, thanks for those titles. I will look for those.

I am considering refusing future treatment, maybe next month or sometime next year. Ironically, I'm doing fairly well, relatively speaking. I have enough money in the bank to pay for a year of insurance premiums. Maybe less taking into account deductibles and out of pocket. That will be the end of the road if the disease doesn't surge and get me before. Not being maudlin here, just realistic. I should have refused all treatment in January as I wanted to but let DH talk me into "trying". I can't undo that but I can be clear-eyed now. I am afraid, but mostly angry.

Lita57

Yeah, Muddling, I'm thinking about possibly throwing in the towel too, depending on what my next set of scans in two weeks say. Don't know how much longer I can take this s&*t as I'm not doing that well anymore, no matter how much I try to deny it and pretend it's not happening. My eyes are almost completely gone. My hands seize up, and several times a day my throat/neck locks up in painful spasms, which it has been doing for well over two months.

My back hurts ALL THE TIME NOW, and the pain meds and cbd's only do so much. The SE's are getting worse, too. I'll stick it out until the end of the year for the sake of my family - - unless God has other plans and takes me out earlier - - and do one more Thanksgiving and Christmas. I already have a palliative care dr waiting on deck, so that's covered at least.

No one can make these decisions for us - we can only do it for ourselves. I'm not going to let anyone talk me out of this. This is MY life, and MY painful struggle. It makes me sick when people say, "Oh, you're SO strong...you can stick it out a little longer. Don't give up..."

Bullcrap! If these people had to live with what I have to live with, they'd change their tune in an instant.

MuddlingThrough

Sorry for your suffering, Lita. I have plenty of physical pain and limitations too, although different from yours. I can see the timeline running out and now need to focus on reaching it on my terms. All the best to all of us however much life is left to us.

Lita57

Amen, muddling.

I know so many people who stopped Tx and actually ended up having a few fairly decent months (they were using some "alternative" substances and supplements) after all the chemo toxins finally left their bodies.

I would like to take a couple more short trips if I can, but we'll see.

Hang in there,

L

runor

Lita, I want you to know that I have learned a lot reading your posts. You have set an example that I hope I would have the grace and presence of mind to emulate should the need arise. I see a great dignity in your conduct and have deep respect for it. Even though I don't post here too often, I read. There is much that can be learned here. Hugs to all.

SheliaMarie

I picked up the scan report from my onc’s office today. The radiologist clearly thinks the one nodule is a new primary lung cancer. So, to me that reads “end of the road”. I don’t know anyone who lives past six months when dx with lung cancer. I’m absolutely sick. And so very sad. If I live six months I will have just enough time to see my baby girl graduate high school.

SandiBeach57

Sheliamarie, will that nodule be biopsied? Do you have a history of both lung and breast cancer? Do your blood tumor markers indicate lung cancer?

It seems that you have placed a death sentence on yourself when there are many questions yet to be answered. Please get more information or a confirmation scan/second opinion. You sound so sad.

SheliaMarie

Sandi, I haven’t had any personal history of lung cancer. They are scheduling me to have a bronchoscopy/biopsy to determine if it’s mets or lung ca -I just don’t have time or date yet. And I don’t think we’ve ever done tumor markers. Honestly, the whole situation does feel like a death sentence... and I feel so helpless and hopeless.

Cpeachymom

shelia- Like runor, I do read this thread from time to time. I just wanted to give you some small hope. My aunt had advanced lung cancer and was given the “six months” prognosis. She lived well over two years with that. This was over 20 years ago. Don’t give up just yet.

JoE777

Shelia, please wait for further testing. I too have 5 met to my lungs that appeared as tiny nodules. It may be breast cancer and the targeted therapy will be changed to knock it down. Please keep us in your loop. Hugs and peace. J

Tina2

Shelia,

Only a biopsy can determine if that nodule is primary lung cancer. Please don't despair. Years ago, after a scan revealed 19+ nodules in my lungs, my primary care doctor sent me running to a pulmonologist. He decided to watch and wait, eventually theorizing I had lung cancer, even though I had a history of breast cancer. When a scan showed growth and activity, I asked for a biopsy.. Bingo: BC metastases!

I fired the pulmonologist and went back to my old oncologist for help.

Flash forward: seven years later, I'm still here and doing well.

Lesson: Have hope and hang in!

Tina

Sadiesservant

SheilaMarie, also want to chime in that someone in my office was diagnosed with lung cancer shortly after I learned of my recurrence early in 2017. She is now 18 months out from that and doing very well on a maintenance chemo. Don’t give up hope.

Kattysmith

I finally watched "Coco" last night. November 2nd, Day of the Dead, is also my anniversary (3 years) of my diagnosis, so I call it Day of the Not-Dead-Yet. What a joyous and heart-rending film! Someone said it presents death as a life-affirming inevitability, and it's true. That's the afterlife I want (even though I don't *believe* in one). Plus, I've always loved skeletons. I have put in my request to the Creator / Source and my daughter-in-law will have an ofrenda (altar with offerings) for me when I go. Beautiful.

Parrynd1

Day of the Not Dead Yet...love it.

SheliaMarie

I had a consultation with my pulmonologist to talk about the bronchoscopy and biopsy I need (to determine if I have lung mets or lung cancer). This appointment was hard for me as we had to talk about risks, and I’m definitely a higher risk for a problem because of the amount of pain meds that I take. The pain meds I’m on means I have to have more anesthesia.

Then we had the talk about DNR and living will. I’ve had surgery before, but this is stuff I’ve always just signed on the line for, as it was no biggie. This time I’m a little panicked because my mortality is in serious question. Now I’m sitting here with the paperwork for my advance directive and I’m frozen... can’t seem to get myself to put pen to paper. I literally feel sick, and I need strength. Again, I find myself in a position where people say “it’s all in God’s hands” and that terrifies me as I feel as if God is mad at me or something. My prayers for the past 18 months or so have been answered with a big,resounding “NO!”

Lita57

SheilaMarie,

Just think about those people who were killed in Thousand Oaks a couple of days ago, and the older folks who were killed by that anti-Semite last week (or was it two wks ago?).

THEY DID NOT GET A CHOICE. They didn't have St 4 cancer like we do, but hey, they still got their lives snuffed out WAY before their time.

Realistically, the same thing could happen to any one of us at ANY TIME. And out here in California, we have these idiot gang bangers driving up and down the highways, and they will actually SHOOT someone thru their car window to get their "gangland initiation" over with.

NO ONE is guaranteed tomorrow. I'm having a PET on Monday to see how badly my kidneys have now been affected, and how much infiltration/progression has happened in the psoas muscles next to my spine. I can barely walk across the living room floor now, and spend the majority of the day in my La-Z-Boy with the message unit on full blast because I don't want to take too much pain med (b'cuz of my ailing kidneys), I'm coughing and wheezing way more than usual, so there might be some more lung involvement, too.

Regardless, I'm ready to "transition home" whenever He calls me. Yes, I will leave my DD and DH behind, but at least they've had time to prepare...not like the late folks from the club (Pulse in FL) and the synogogue.

Wishing you the best..,rads to spine and muscles can help. I had incontinence issues and couldn't feel my (ahem...ahem...) privates for months, let alone do Kegels. Slowly but surely, the sensation (and bowel control) is coming back, but there are times when things still feel "dead" down there.

L

SheliaMarie

I know, Lita, and I feel terribly selfish knowing that so many others are taken without any rhyme or reason. I just haven’t come to terms yet with the fact that this is the end. I always looked forward to my 40s. I had my children young, so I figured once my baby was in college I could figure out who I am as a person, not as just a mom. I’ve been a mom longer than I’ve been an adult! I had my oldest at 16. I started preparing for my 40s by taking a local travel nurse position which allowed for me to put money away for travel and such. And then I turn 40 and shortly thereafter discover I’ve now got MBC. So, instead of figuring out who I am, I’m trying to figure out how to not die just yet. I just need some peace - for me and my children. This is as hard on them as it is me

LoriCA

SheilaMarie, I signed my DNR, Advance Directive (aka living will) and POLST last year and here's how I got my head around all of it - death is an eventuality for all of us but the Advance Directive and POLST lets us set some of the terms. If and when my body gets to the point that I need a feeding tube and a machine to do my breathing, it's time to let me go. It's not going to do me or my family any good to keep me alive through artificial means when we all know that I'll have nothing bad things to look forward to at that point. I find it extremely reassuring to have those two documents on file because I do not want to end up having my body kept alive by artificial means. If I had a chance at "recovery" it might be different, but I have terminal cancer, when my body is done and starts shutting down, I'm done, let me go in peace. That's how I personally feel about it, but both documents allow you to specify exactly what artificial means you are okay with and what ones you don't want, and you can change/revoke them at any time. The POLST may be a California-specific document but it gets even more specific than the Advance Directive/living will.

The DNR is scarier, but I had a good conversation with my hospital staff when I had my first surgery that reassured me about the whole process. Since my documents are part of my medical file they always ask about them and if they are still effective every time I check in (you can revoke at any time). The first time scared me and I started to wonder if I had made a mistake in signing a DNR. They reassured me that if something was to go wrong during surgery they would absolutely attempt to revive me, they are not going to just let you die on the operating table because you have a DNR. They asked me again yesterday when I checked in for a simple biopsy and it caught me off guard for a minute, but then I remembered that if anything goes wrong I'll still be okay.

I think the most important thing to remember is that we all are going to die eventually and death from cancer isn't pretty, eventually our bodies are going to start failing. The documents give you some control over how it happens and let you provide instructions now, hopefully well in advance of that situation. For many of us that is very important, but you don't have to sign them if you're not ready. No one will refuse to operate just because you haven't signed a DNR and Advance Directive. If you don't have those documents, they will take every measure possible to try to keep you alive at any cost. No matter what you decide, I also think it's important to have some heart to heart conversations with your family to make sure everyone understands what you want and will support your decisions.

I hope you can find your peace with it and make the decisions that are right for YOU.

Lori

SheliaMarie

Lori, the crazy thing is that I advocate for everyone to have this information on file. As a nurse I know what it’s like seeing someone with no real chance of recovery have CPR performed because someone wasn’t ready to accept the inevitable. Now I just need to remember to practice what I preach. Being the patient is so much harder! I’ve made my wishes clear to my family and my best friend (she’ll be my executor because she’ll do the right thing even if it’s hard), but that was before I had MBC. Now the situation is just closer to home. I’ll get it finished this weekend. Baby steps ;

LoriCA

oh my, had no idea you are a nurse SheilaMarie! I can only imagine how different it must feel to be the patient. Signing those forms is very emotional, my husband struggled to hold back the tears when I signed mine & had them notarized (even though he understands and agrees) and that almost broke me. Since I could assign multiple people, I added a sister and my sister-in-law to enforce mine (after long conversations and giving them copies) because I have concerns that my husband might have a hard time emotionally being the one to let me go. They all have very good relationship with each other and I trust them to support each other. A nurse friend of mine told me that family members often override the documents even though it was my understanding that they are legal documents and that it can get ugly, the last thing I want is to have my family fighting and agonizing over what to do with me.

Lots of hugs for you!