A place to talk death and dying issues
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Tamara I don't know about hospice, but I suspect there would be someone like a patient's advocate or social worker who could hook you up. Also, I don't think they want our organs since we have cancer. You can still help by donating your body to your local anatomy board. We can help train medical students.
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Dr said I wasn't sick enough to go to hospice. there's a lot of perks that come with being on hospice. My oncologist was okay with it I've been going to him since 1996 and I pretty much do what I want good luck I'm here if you need me.
Sandy
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I only know how hospice works here in BC. Your GP or PCP can start the process, but it's only available when your prognosis is 6 months or less. There is paperwork that needs to be filled out but I've not seen it, I've only had the process explained. Palliative care is something that can be administered at any time & may include the counseling you're looking for. HTH, Dee
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I was given 3-6months.... 9months ago. Currently have new activity. I live alone and really am alone. I've done my best to prepare and line people up, but I'm worried. I would much rather die at home. Did rehab facility after surgery and was miserable. Not so afraid of dying, more afraid of the possible debilitation leading up to it.0 -
Not sure if you can get hospice at home, I know you can here where I live. Can you call the cancer centre where you were treated & talk to a social worker or nurse navigator there. Try calling your PCP & talk to their office. I have found that there is information out there, but it is sometimes so difficult to get a hold of. But pick up the phone & try to find someone who will help you out. Do you have a Cancer Society where you are? They are usually run by volunteers who, I have found, can be very helpful, they have nothing but time & will call around to find out information for you.
Sorry that you feel so alone... ((hugs)) Dee
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Cancer Society calls will be added to my Monday list! Thank you Dee
Regardless of who we have or don't have, we all feel alone right? I went to a light festival at the zoo with two friends last night. We had fun, it was beautiful. In the 6 hours we were all together, not once did anyone ask what was going on with me. I feel like I can't talk to them about this because they can't deal with it and prefer to avoid. So I try to just be grateful for the once a month outings. But that is what has made me so hyper-vigilant to do all my prep stuff. No one else is willing to be a part of it, hear it, much less research for me.... Except my Brother who did research suicide for me. Did find out that places that you can donate your body to science will not take you if ruled suicide.... or weigh over 250....
Dunesleeper, I'm sure you're right. A lung or liver from a cancer patient isn't likely to be in high demand! lol I always figured/hoped My bits and pieces could be used for BC research. How are you today? Dusty?
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where do you live Tamara, I am dying at home, hospice!!!0 -
Southern CA... I didn't realize till the other day that 6month dx was all that was required. I had thought days or weeks prior. Im planning to look into it further Mon. Any advice or suggestions are welcomed!0 -
My sister was in a hospice facility, but got well enough to go home eventually. She remained at home and received hospice services there until she passed a couple of months later. Both situations were nice, although when she was at home, family was responsible for most of her nursing care. If you don't have family/friends to do this, it might be a bit difficult.
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That's what I was afraid of, I wouldn't have anyone. I'll have to look into facility options so that when it's time I get to choose. The first few facilities that were in my area had horrible reviews.... I have a busy Monday! lolAm I the only one that laughs at my own typos??? I typed busty instead of busy! Still giggling!
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Hi, Tam, I know I feel alone in this journey to a large degree, but I don't know how it could be any other way. There are people who are trained to be able to relate to us (hospice ministers, pastors, some counselors), but our friends and family may not be able to face what we, ourselves, are having a hard enough time facing.
I've been at "this" for 8 years, and early on, I remember crying and telling my husband I didn't know how to quit breathing. Honestly, scares me to death, so to speak. But the other day, I thought, my BODY knows how to stop breathing. It's programmed to do that at some point no matter what. So is everybody else's.
I'm so grateful for all of you.
xoxoxo
Calico
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Calico u r right, a friend of mine died from bc in January, she got diagnosed after me, should have been me...
Anyway, i have already spoken 2 the hospice nurse's n yes they take care, help with baths take
care of the meds...
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What I have seen of hospice I really like. The facility that took my Dad had private rooms. They were wizards at relieving pain and there was no signs of it. It was a very supportive environment for my Mom and everyone else. The follow-up to check in on my Mom was terrific. I was impressed. This was in Sarasota.
They have a nice facility here in Oregon, but my old manager works there and I frankly can't stand her. (personality issue) So the thought of having to see her at the end of my life just makes me cringe. I know I should just grow up... but. I plan to kick off up at our cabin in the woods. Not sure how any pain relief would find me there. hmmm.. that's kind of an issue. When I feel lousy I like to be alone and not around people. I do not want to die at home. I do not want my kids to think of my death and this house. I want happy memories within the rooms and the garden. I love our garden and this house.
Calico you are right, no one "knows" unless they live it! We are born alone and we die alone. It's a personal journey. I vividly remember my Grandmother's death from IBC and it was ugly. (that was decades ago) The cancer pain issue bothers me. We have death with dignity in Oregon and that's an option. I wish we could all just go to sleep when our time comes and pass ever so gently on the out breath, leaving our fleshy little bodies on the shore.
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Rose i wish i could just die on the beach. I rent my home so that is why the decision was made 4 me 2 die here. Rose personal ? Since live in Oregon, have u considered doing it yourself? I wonder what i would do ifi had access
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Yes, but not so sure how teens would react. Everyone I have ever known who had a family member who committed suicide was scarred by it for life.. unanswered questions and fears. I do not want to leave any mental pain/ baggage for my kids.
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Oh, Rosevalley, do I ever relate to not wanting certain people ushering me off the earth. Our across-the-street neighbor is a visiting home nurse and we had a falling out years ago. I think she's probably a great nurse, I know other people she's helped, but she's not for this one! I'll go into a facility an hour away before I'd let her tend to me. My husband understands this completely, thank heavens.
My sister and another very good friend both got cancer after I was diagnosed and they have already died. Sister was gone within 2 years (bladder cancer), the other within 4 years (breast cancer), and for some reason, I'm still here.
xoxooxx
Calico
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Calico, when I went through a period of fear about dying I thought hey, everyone else does it. I can too. LOL. Anyeay, it gets me through.
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Tam, I'm fine. Getting ready to go to a Christmas concert. Running late as always. Dusty is great but he woke me up way too early to uncover him.
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Hey, Dunesleeper, I've felt pretty silly sometimes feeling fear about it. Talk about a universal experience! I'm not so concerned about being "dead", but am concerned about the dy"ing" part, control freak that I am. Guess I'll have to get over that! Me and my false beliefs in my own ability to manage things until the end. I know I'll have a lot of input, but I've learned fairly recently that I can't truly control people, places, or things. I can easily forget that, though.
xooxox
Calico
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The only thing that worries me is pain. I want a quiet peaceful death. I would be ok in either my house or a hospice facility. I am assuming that my dd's will sell my house after my passing so neither will have to live with the end of life memories.
Rosevalley, if I remember correctly, my sister had a pain pump implanted in her abdomen. The hospice nurses only had to change the "cassette" that supplied the meds periodically. This might be a good solution for those who live in more rural settings. Forgive me if at his sounds like I'm talking about something as mundane as changing shoes, but the frankness of this thread makes me feel as if it's ok to do so.
My sister had aggressive uterine cancer. She passed 4 months after her dx. She was an RN, a marriage/family therapist and had lived strictly "natural" lifestyle for over 30 years. Cancer doesn't care.
Caryn
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I also find the dying part more scary than being dead. Pain, the impact on my family...
Sometimes I think of all the things I will be missing, but then realize that actually I won't be missing anything. It's the thought in my mind now that is disturbing, so I try not to get hooked.
There are so many things we can't control, but what I know I can do is work with my mind. Not easy, but now is now and there isn't any other now. So I turn my mind to what I feel grateful for today.
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We all, sick or not, worry at some point how we're going to go. But for most it's a distant thought. for us, it's a reality. Suicide leaves a lot of questions. I have toyed with the idea (for when I get further along). I don't think anyone in my life would struggle with it. I think they understand that my quality of life and freedom is already affected and I have said I feel like I am existing more than living. I still have good moments and find things to enjoy. But, it is getting harder and harder. But I don't have kids, grandkids...Maybe I would feel a bigger responsibility and maybe more of a drive to last as long as possible if I did?Dunesleeper I hope you enjoy the concert!!!
Calico, I realized early on in this that even if I was surrounded by people, I would still feel alone on many levels. Because you're right, most people can't really know what we are feeling. I just wish I had someone trying ( Besides you wonderful ladies!)
RoseValley, Forget trying to be a grown up! If you would be unhappy dealing with your old boss, that is not the place for you!
When the end is eminent and pain and or loss of dignity is all that's coming, I don't see it as suicide. We wouldn't want/let our beloved pets live in that state, why would we want our loved ones to?
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Jill, I identify very much with your observation about working to manage one's mind. Very Buddhist idea, and very helpful goal for me.
Tam, I don't have kids or grandkids, either, and I've wondered the same thing about whether I'd fight harder/be willing to suffer more if I did. I don't have anyone who relies on me. My stoic, self-sufficient husband will be fine. We talked for the first time about my stopping treatment last week, and we are both on the same page, thank heavens. He gets that I'm in pain and suffering. Which brings up the idea that pain and suffering are distinctly different, and don't necessarily have to travel in pairs. I don't see how I can unlink them right now, though.
xoxoox to you all,
Calico
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Jill /Calico- mostly I just live in the present and refuse to "go there" about what will happen in the future. The only thing you can "control" if you want to call it that is your reaction, mind and perceptions. The cancer will do what it's going to do regardless, no control there. I know that if my perceptions of misery and pain get overwhelming that I can"fix" that with as little as a 79cent razor blade across the carotids. Not rocket science! No need for medical intervention, psych eval and prescription! Messy ending for you ever finds you, but quick and relatively painless. You don't even need a state with death with dignity laws. I am fine with that whole senario from a religious point of view and ethical stance.
I have 3 kids who would not be fine with a suicide and would suffer as a consequence of my actions - that concerns me. I am leaving anyway so why not make the exit more about what they need then what you need. Sigh... which makes me mentally miserable. What they need and what I need are at odds. They need a Mom who will live until they are all out of school and on their own... something I can not give them with out signing up for WAY more medical intervention then I want and no guarantee of surviving anyway. We are all stuck in this situation, sucks!
I won't go to our local hospice. No worries..far too irritating! I need forest therapy to aide in my exit! Nice view of huge old growth trees and my whole perspective on leaving my body just calms right the heck down. Frankly I believe we just continue on in another state and there is no "death" just a change. Therefore I am not scared of dying and am kind of looking forward to resolution and not having zingy irritating feet, sore joints and endless aches and lying awake most nights for hours until I finally fall asleep thinking about how much I HATE this whole mess. The psychological part of my whole cancer journey has been made nearly 100% worse by the medical treatment I have had; that has been more miserable then the cancer and any pain it's caused me. I am to the point where the irritation of treatment and providers, isn't worth the aggrevation. Since I ditched the afinitor AMA and went for the aromasin, which I didn't expect to work, did and might be tappering off, I have had more time to think about options - what if anything to do about it. I trust no one with an MD stuck on the end of their name.. sad state of affairs. Learned that on the miserable treatment road.
Calico not having kids would be a blessing in this situation. You feel obligated when you sit across the table from a middle school kid happily yacking about sleep overs and what's for Christmas. It makes you feel like a shit for messing up her childhood. Life has just gotten so achy and so confining and limited that my enjoyment of it is starting to feel like it's not worth it. I got on the internet and started looking at State Parks in Utah and Bryces Canyon and Pueblo Indian ruins which I have ALWAYS wanted to see and thought... a short walk or being on your feet all day leaves your joints just screaming and your feet too.. just how much fun would you have? Then the thought of returning to "treatment" here just finishes me off. yuck...
But hey.. preaching to the choir right! We are all in the same friggin shitty little raft... what a cruise!
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What a cruise. Ha ha ha ha. I have no idea what happens at death. Maybe there is nothing, but it seems to me that should only bother people who believe that this is all there is. I consider it a possibility, a distant possibility. If nothing else, our ashes or bodies will return to the earth or the sea to give life to something else. So even then we actually continue. Somewhere I read about Buddhists who actually practice a meditation that is meant to enable them to observe their transition completely. I think that takes a long time of practice and this would be a bit of a late start for me. But wouldn't it be cool!
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I lost my mother, my sister and a beloved dog in the past five years. I like to think that they are all together in some very lovely place and will welcome me when the time comes. Also, I would like the body of my youth back, but do not wish to lose the wisdom of my years.
Caryn
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Awesome combo Caryn!
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Dunesleeper- yep.. if you were long practiced in meditation death would be so different. Next life time Ha!
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Yep. Next time Rose. For a long time I wanted to write a book with a title that would be meaningful even in a new incarnation. I would put in it all the things I messed up in this life so that I could give myself a push in the right direction next time. Clever me. I procrastinated on that too.
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Rosevalley, I understand your reticence to travel. A few years ago, my husband and I toured the Utah parks. If half the fun for you would be hiking, then it wouldn't work with your symptoms, but we didn't walk a lot and still enjoyed everything. We didn't need to get out of the car to take in the spectacular views.
And my heart goes out to you and your painful dilemma about what to do and the children. I hope you can find some peace with whatever you do.
My younger sister keeps bugging me to get together with her, and I keep putting her off. I'm very short of breath, can't do much, and don't want to sit around hanging black crepe paper. Never sure from day to day how I'm going to feel, either. Dang, it's a bitch to try and plan with this.
Both my older sister and brother have preceded me in death. I was on the outs with both of them when they left the planet (long story). So I'll get to hang out with them when I pass over. Yikes!
xoxoxox
Calico
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