A place to talk death and dying issues
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Someone directed me to this thread and I am SO GRATEFUL...
I am hoping to meet someone on a similar journey. I am also hoping that my choices will be respected here because the feeling of loneliness is becoming overwhelming.
After an initial diagnosis and treatment 5 years ago (chemo, radiation, herpecin), I have recently have had malignant pleural effusion, which when biopsied, revealed my breast cancer is back, is Stage IV.
Here's where I feel my choices become a bit different than many people on here from what I have read so far. I stopped going to the doctor. I chose not to get scans to see if I have mets in my bones, brain, liver in addition to my lungs. I chose to come home, to my family, to my home (I am on palliative care and will progress with hospice when appropriate) and let nature take it's course. My reasons are many, but primarily just that I have had several other medical issues throughout my life and I want to be DONE with doctors, hospitals, etc..
hank you for the thoughtful response. I should note I am already at the point I am housebound (chair/bed most of the day), on oxygen 24/7, unable to walk without assistance, bathe without assistance, etc.. I am unable to read or write and some days can't even focus on television. On my very BEST days, I am able to sit and visit with my friends and family, but I still do it from one of the two rooms I live in at this point. So, the quality of life is very different. I have been blessed with having many Stage 4 THRIVERS in my life over the years, women who have lived and many who are still living over a decade with Stage 4, so in that regard, I know it's not a death sentence any more for everyone, but again, with my co-morbidities and malignant pleural effusion, peaceful acceptance feels good.
Anyone else choosing this path on here? My family, friends, husband don't understand. They go back and forth between being angry and sad and mostly just confused. But, this is one time I am standing firm with MY choice.
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Snarkyseassiren, at this point in my life with cancer, I do not fully understand your decision but I do not judge it and do not question your choice. I hope you enjoy the time left as best you can and wish you well throughout the coming months.
Also, I have no intention to offend, so if I do, please feel free to ignore my post but I am curious about so much related to cancer. I wonder if you’d be willing to share when you progressed to stage IV and how you felt just before, we’re to having issues, mobility or otherwise, or did all of this happen quickly? Like I said, I apologize for my bluntness, I realize I don’t always seek information in a tactful way, sorry.
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Hey Moth! I did realize that as I was reading it. Sorry, I am not sure of what is what still. It has been overwhelming trying to learn. Thanks again for that link. It did give me some answers and help. I researched more and read forums and such.
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Snarky~ everyone has their own way of going through something like this. I myself have told my family. I won't be going through any chemo that cannot be taken by mouth. No more infusions and harsh poisons my body can't take it anymore and I'm either can my mind. Loosing my hair again would be too much to bare. I respect your feeling and decision. I had thought about doing that in the beginning. The pain I felt made me think otherwise. I had to get this thing out of my chest. It was painful. I wish you nothing but peace with your decision and find it brave.
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Today I went to the same mortuary where I had made my husband's arrangements shortly after he became ill (couple of years ago). I wanted to finalize my own wishes for my own services and make sure everything was taken care of. Turns out, the person who helped me back then did my husband's paperwork incorrectly, so it had to be redone, okay, fine, glad I'm here and let's take care of it. Then, unbeknownst to me, the woman "helping" me is signing me up for a plan that basically states I can't die in the next two years, otherwise the insurance company can contest it? And maybe not allow the money I've paid to be used for my service? I told her I am stage 4 MBC.
I asked question after question after question, finally another employee came in and explained the difference between putting the money in a trust, and then doing it the way this woman was insisting. I had to excuse myself for a few minutes to go out of the room and cry, tears of frustration and anger and sorrow that I even have to DO this, and then return and insist that BOTH my husband's and my pre-arrangements be in this trust. Like this woman could not grasp that I could die in the next two years, I had to try and convince her that yes, it's possible. I screamed in my car afterwards.
I haven't made funeral arrangements before, and I feel like I'm a reasonably intelligent person, but this felt deliberately confusing and just emotionally awful. And it took 2.5 hours, it was like I was buying a car, or they were trying to sell me a car! I shouldn't try to do these kinds of things alone, but I naively assumed it was straightforward. Never imagined I would have to try to convince someone in a funeral home that I am sick enough to die, good grief.
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SF-Cakes, I’m so sorry you had to go through that at all and be alone too. I’ve never heard of anything so absurd as paying for arrangements but then be at risk of losing those arrangements if you die too soon. What the (bleep)? I hope you can get things straightened out and not be alone. Do you have to stay with these people? Ugh! Hugs
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SF-Cakes, I am making funetal prearrangements along with my DH. Just a detail ti needed to check off.
Do you have advice?
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I too am thinking about making my arrangements. Actually, my Palliative Care Team suggested it. I am doing "ok" with the MBC-- 2nd line therapy, but 4 years in with liver mets. And I just lost my sister in August so it is fresh on my mind. But I have not went to the funeral home yet. Just got a booklet to start the process. I wonder what they will tell me. Man, I do not want to do this. And I will be alone too.
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Thank you, KBL, and "what the (bleep)" was going through my head when I finally understood what was happening! This mortuary actually has a very good reputation, I know many people who've used them for their loved ones, and that was probably part of my disbelief yesterday. Of course I'm hoping that I don't die in two years, but what the bleep!
Sandi, my recommendation is to let the funeral home staff know, immediately, that you have a stage 4 cancer diagnosis. Apparently this was what I should've done as soon as I called for the appointment. Other than my thinning short grey hair, I don't look sick (and I put on nice clothes, to be respectful!) and I'm 52. So they assumed a lot about me, and I just honestly didn't think I needed to make a big deal about it. Make a big deal about it! This, I guess, is one time where it's not a good idea to minimize our diagnosis.
The mortuary here keeps the money I've paid them for the funeral arrangements in a trust (they don't keep the money themselves), and then when it's time, they take that money out to pay for the services. My husband wants to be cremated, and I elected to attend his cremation, but I don't want my family to attend mine. They have basic services available, like they will come to the house 24/7 to pick up his body (he wants to die at home), and they take care of death certificates, all the other paperwork, placing the obituary, etc. You can choose any additional things you want on top of the basic service. I think it's a good idea to request their list of all available services ahead of time - I was pretty clear what I wanted going to the appointment, but then got blindsided by this weird "insurance" thing.
Candy, I will say I feel better today, knowing that's all taken care of now, despite all the ridiculous drama yesterday! It was hard, certainly. I ate cake when I got home. Try to do it on a day when you've got nothing else going on so you can be compassionate and loving with yourself.
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SFCakes, I’m sorry you had such an ordeal at the mortuary. Gosh, you’d think someone in that line of work would have some experience and have encountered others with life altering medical diagnoses. Be proud of yourself for staying the course, tho, and getting it done even if it took several hours.
Btw, SF, you give candy great advice to block out some time to be compassionate towards herself after taking care of end of life matters.
Candy, I’ve addressed some of these things and even tho I felt very weird and strange doing so, I was very surprised that after I did, I felt such relief! I was able to stop thinking about it and move on to other things! And I felt proud of myself for being an adult about such matters.
My husband and I were able to talk about what we wanted at the end and both automatically said we wanted cremated and then ashes buried in the cemetery. We bought a cemetery plot. I also felt we should get a headstone but I put that off for several years. When we finally did get around to it, I was able to work with the seller and engraver to tweak the details. It surprised me how meaningful it was to me to have it look a certain way: a certain style headstone, the color, the font, and I didn’t want anything religious or funeral looking, like crosses or heavy floral carving, but I found a simple design resembling a couple of dogwood flowers and had it added to headstone.
We updated our wills and health care power of attorney. I wrote my obituary. I also told dh I didn’t want a religious funeral but I do want a memorial. And I told him if he let my sisters go through my belongings when I’m gone, I will come back and haunt him.
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I am hopelessly behind on the end of life stuff but am making the long, slow slog toward better organization over all. BTW, I intend to come back and haunt both of my lovely daughters regardless 😉.
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I have several things I need to get done that I was in a panic about when I felt especially horribly. Now that I feel better, it's hard to get organized and get them done, probably mostly because I'd rather think about happier things. I need to get motivated and cope.
Speaking of unhappy things though, have any of you looked back at old posts from people and noted times between joining and when their last post was? I know there are people who just don't post often or stop coming to these posts but I doubt that explains the ones that post a lot but haven't for years. It doesn't reveal anything that we all don't already know but it's still scary.
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Yeah, kris. Or when someone is not doing good, I look at their diagnosis date and compare their tlmeline to mine. Or when we lose someone on here. Sobering.
I too am feeling sad.
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Kris,
Yes, all of those things are tough to deal with. You are correct in that we never know why a member stops posting but I guess that’s part and parcel of an anonymous message board. I am de novo stage IV and often we know when stage IV members have passed but sometimes we just don’t know. Yes, it all makes me sad but after 10 years here, I have had to accept that some simply disappear and we may never know why.
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kris, you are still quite new to being diagnosed with metastatic breast cancer. I can remember back when I was new, too, in 2011. I found this forum. I would read and read, trying to understand the situation I was in. At the time, I remember looking at some of the timelines of women with mbc who no longer posted. I was trying to see how long they'd lived, what length of years they got. I don't know if that was creepy or normal, but I don't care. It's just something I did.
Being as you are new, you may not realize that for the most part, we do our best to keep tabs on each other. We often know when someone has reached a point where they have decided on no more treatment or are in hospice. Many members will ask a loved one to reach out and let us on the forum know of their passing. Or another member finds out about a fellow member's passing and informs us and sometimes the obituary is shared.
We try to see to it that deceased members are listed on the In Memorium thread.
Because you're new, you may be seeing names that you are thinking, “What happened to this woman who hasn't posted since 2016?". But because I've been here so long, I remember quite a few members off the top of my head who we were informed when they were no longer with us, and if I go to the In Memorium page and read the list, it jogs my memory and I remember more. A few special women for me have been LilyLady, SpringLakeGirl, Chainsawz, Fitztwins, StageFree, Kandy and Gumdoctor. Gosh, they meant a lot to me.
There are occasionally some members who drift away, some join for a short time but don't get enough out of it to stay, that's okay, and we never really know what's become of them. But for the most part, we do try to stay informed about each other.
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Good point Divine!Yes we do tend to ask if a previously active stage IV goes MIA. My younger dd is a bco member. She doesn’t post and i can’t remember her username, but she has already been assigned the job of posting when I become very ill and/or pass away.
For as sad and upsetting it can become, we are all cognizant of the reality that is stage IV. Many of us try to view our impending demise as something to we have to deal with so we make end of life decisions, make our final wishes known etc. The thought of this sounds depressing but it’s actually somewhat comforting. Additionally, it’s not as if most of us are resigned to dying, on the contrary some of us endure extraordinary things just to try to live longer, but we remain acutely aware of the fact that there is no cure for us. I am sorry if this is a bit heavy but please remember than my views have evolved over the course of ten years to reach this point. I hope you have ten years and then at least ten more!
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Hi Kris,
Just to chime in, what you are feeling is very normal. It's hard not be be sad sometimes. And I think most of us do exactly the same thing. It's difficult not to compare the diagnosis and treatment of each member to try to extrapolate to see "how long we have". Of course, we all need to remember that each of our situations are completely unique and pay attention to the ones who are doing well.
Divine, I too miss many that you mention plus a few more who were there early in my journey and provided so much support. Lalady1 (Claire) was so lovely to me among others. And a few, unfortunately, slipped away with no news. This disease sucks...
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Thank you all for being there to "listen" and for being so understanding like no one else can be. I hope I'm around in 10 years plus and can look back and feel at peace.
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It’s definitely a process, kris. It took me some time to get to where I am with respect to mbc. I know that mbc can seem hopeless but I have seen quite a few tx advances in this past decade. And I am optimistic about seeing more.
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I have made a will and I know where I will be buried. I told my husband what I would like for a service and that is it for the moment.
As for people not posting I am sure some of them are dead but some probably stopped posting for mental health reasons they might need a break from cancer related things for a while.
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Sunnidays, you, too, are very new to the diagnosis of metastatic breast cancer. To have a will, know where you’ll be buried and to have a conversation with your husband about a memorial is a lot more than many people have in place when they die. I sometimes think about famous people like Prince, who was 56 when he died and had no will! He had massive amounts of wealth, not just in money but in terms of the music he made and real estate, etc., and as brilliant as he was, he never addressed what he wanted to happen to his worldly goods after he was gone. I shake my head when I hear of things like this.
I think we do our loved ones a favor by having at least a few conversations about end of life wishes. They can feel somewhat comforted by taking care of our final requests because they know what they are rather than guess or completely fall apart with guilt because they don’t know.
I’ve mentioned this before, that discussions with dh were not usually long and drawn-out. Basically they were ten or fifteen minute conversations here and there. If something was on my mind, I’d figure a way to work it into what we were talking about, arrive at some decisions and move on. Heartfelt talks don’t always have to drag on and I know that’s not dh’s style.
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I did the practical stuff because I did not want the practical issue mixed with the emotional issues when the time comes, also scary as it is I looked up how someone dies of cancer and surprisingly a good percentage die of issues related to cancer and not of cancer, being too weak to fight an infections is an example, that can happen very quickly and there might no be time for someone to get their wishes sorted.
I also intend to have a DNR.
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Does anyone else have this problem?
I/We can't decide where I should be buried. We're from the Midwest and still have family there but we live on the West coast now. We weren't sure if we'd stay here when we retire because it's so expensive, my daughter doesn't plan on staying here, and my son is in the military so he's all over the place. Also, what if my husband remarries and gets buried by his new wife? I know I'll be gone and it won't matter to me but still the idea of ending up buried alone somewhere bothers me. It seems silly to me but bothers me nevertheless.
And yes, I've suggested cremation and they can decide what to do from there but my daughter wants a place to "visit".
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kris,
I want to be cremated but some of my family is opposed for religious reasons. Though there is no specific prohibition against cremation, it is generally considered desecration of the body and that is prohibited. It’s a complex argument made even more difficult by the Holocaust. Never the less, not a Jewish tradition but something I want. Not sure how this will be resolved but I do want to have the final word!
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xbrnxgrl and Divine -
We are unfortunate members of the "10+ Club".
I had been off of bc.org for many years and then came back on. I, too, always wonder what happens when someone hasn't posted for a while.
I purchased a journal named "Sh*t You Need To Know When I'm Dead". I have this web site included in it along with my other acquaintances around the globe.
To you all -
I pre-planned and prepaid my funeral abut 5 years ago. My daughter and I went over all the details with the undertaker so that she and my other kids won't have to deal with it when the time comes. I am being buried with my grandfather who died in 1927, so I will have to be cremated. My mother was so concerned that he never had a headstone, so we have one with his and my name on it. The only thing missing is the date of my demise.
My heart goes out to you all and I hope we spend many more years exchanging comments in this chat!
Love, Anna
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amontro
I love that journal title! I feel like I'm in a bit of a no mans land. Stage IV for ten years, still not close to dying but I take no real comfort in that as it can change in a heartbeat. It has been comparatively easy for me physically but I am struggling more mentally with regard to waiting for the other shoe to drop. I keep those feelings in check most of the time but not always
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amontro- I have to ask. Why is being a member of the 10+ club unfortunate? Is it the loss of friends over the years? 10 years of the strain of dealing with a cancer dx? Just looking for understanding.
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I think that one of the things we deal with is feeling like our lives are lived in three-month increments. We get scans every three months, and every three months we find out if we're stable, if we progressed or if all treatment has failed us. Note that I don't say "we failed". We don't fail, but the treatment fails us.
I also think it's hard to see our members who have died from this disease. Maybe there is some guilt for those who are still living. I don't know. It's just my opinion. I'm not even two years into my Stage IV diagnosis. It's exhausting.
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I'm a ten year stage IV member too. In some ways things are easier. As I continued to remain NEAD my scans were spaced out and now I only have them annually. For those who are newer to stage IV this may seem shocking but many of us no longer scan every three months. I was concerned at first but I am very happy about it now and my mo would certainly order scans if anything seemed amiss.
Some guilt for still living? Mountains of it is more like it for me. I see how much some members do to survive; diets, protocols, regimens, off label drugs, supplements, naturopath, etc. I do none of that. I feel as if those who work so hard to live should see some reward, some pay off for their efforts. Heck, I've never even had chemo and I'm the one who is surviving? I never got upset over my dx or even having bc . I just did what was recommended as tx and knew that was my first step. Ten years went by and I stuck to my mo's plan, that's it. But guilt has been my life long curse, well before bc. Many years ago someone on bco asked me not to post about how well I was doing as it might lead others to believe that stage IV is not a big deal. I understood her point, to some extent, but how could I deny my reality and perhaps there were others like me. Needless to say, I did not hide my reality but my guilt is ever present. I have no secret to my survival but I wish I did.
The passing of members is a tough one. I have had to learn to accept that death will be inevitable for most of us mbc folks sooner rather than later. This is a terminal disease, period. There is no way to soft soap the reality. I try to focus on feeling fortunate to have known some lovely members.
Sorry if this is rambling. It's almost 7:30 am here. Cold, dark and rainy but I still haven't had my coffee or walked my dog. Better get moving.
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Sunshine -thanks for the response
exbrnxgirl - thanks for the been there done that perspective. Right now, I'll be thrilled if I can make it to five years (seems more hopeful with every NED scan), so I was interested to hear it. I know we all have our burdens. With my last MO, we were starting to stretch out scans and bloodwork to 6 months and 6 weeks, respectively - and maybe going to 3 mos on bloodwork and longer on scans in the future. It will be interesting to see how my new MO thinks...when I find him/her.
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