A place to talk death and dying issues
Comments
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Linda, thanks so much for sharing your story. It could be a movie! So happy for you and hope you live long and happily ever after with Les. Kim
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KJones, sorry to hear about your grandfather. My prayers are with you and your family.
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thank you all for your kind words and prayers.
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Thanks 4 the story,
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Good piece on the Brittany Maynard effect in today's Washington Post:
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Excellent piece! I live in Oregon and at least I don't have to deal with that miserable piece. Pity the folks who are not even offered the option. I think that's the biggest card in this - knowing you have an option to opt out if the dying path proves (in your eyes as a patient) too miserable. Thank you for the link.
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Hi Ladies: lately I've been thinking a lot about death, even been having dreams about my mom and dad that have died. I haven't had a dream about my son yet who passed away 21 years ago. He died in an automobile accident, on the same night that my granddaughter was born. Some people say that when you start dreaming about dead people your time is near. I don't know how true that is. I know that sooner or later the death angel is going to come calling. It's a fact that as sure as we live, we are going to die. I know that I'm not dying today from breast cancer. The one thing that I don't want to do is be pulling back. I want to go in peace when my time does come. I live in Memphis, TN, and last week there was a radio-thon going on to raise money for St Jude Hospital for children. The testimonies by the children and parents was so overwhelming until I just started balling in my car. My eyeglasses got so wet and full of tears, until I had to just pull over to clean them and ask God to help me not to complain so much anymore. I've tried to prepare my husband and children for my crossing over, but my children aren't listening. They know that this crazy, stupid cancer is taking people that we know,and yet they are in denial.
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mscal, I dreamed about my cousin Friday night and wondered the same thing, but I used to dream about my best friend a lot, and obviously death did not come calling. I am expecting her to guide me, but I'll take anyone. She's going to hear it from me if she's not at least on the welcome committee.
I cried Wednesday evening a little. I was in a lot of pain. Maybe it felt more real because of the pain. I don't know. I'm grateful I have my mom who is pushing me to do things. We're going to Atasia Spa in Berkeley Springs WV in January and cruising the Danube in the Spring, so death will need to stand in line.
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Cool stand in line u have things to do.
Me i am thinking bout who in what order i want to see people, wish i knew how it eent, wanta get this right n not screw it up
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I told my oncologist that it doesn't matter what type of medicine he gives me, when it's my time to die, I'm going to check out. He told me to go and live my life. What I like about him is he'd never put a time stamp on my life. I'm afraid to have to go to the emergency room and have a doctor there tell me how long I have to live. I just want to live until I die.0 -
My mo n i never discuss it unless i ask.
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I did that too blondie. It turned out to be very disappointing. A former coworker and I were planning to do dinner. Then he just sort of faded away. A friend I had not seen for a long time just never really seemed terribly interested. I know she has some crap going on in her life with which she is not dealing well but maybe she just doesn't care. Maybe I should come right out and ask. I dunno. Like I said: disappointing.
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I am sure she is dealing with her stuff n it has nothing to do with u.
HUGS
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Hi all
I am new to boards of any kind. Virgin Poster! I was diagnosed with stage III triple neg in 2011. Did all the hoopla... thought I was past it and moving forward. Then when driving to work, I had a seizure. Brain mets. I had surgery and gamma knife. I have been doing follow up mri's every 2 months. This last one shows regrowth. Waiting to hear from docs what they suggest for options. It's been a little stressful to say the least. Saddest part, is I don't have anyone who is willing/able to listen to my feelings. I am the listener. Even since my mets, I have spent countless hours listening to my friends and their issues. I rarely say anything about my situation in general. And now I say even less. Last time I said anything was going into Halloween. I said that I was going all out on my costume because I know this is possibly my last one. My friends response was " Don't count yourself out! Think positive!" Though well intentioned, I felt like my feelings and fears were dismissed.I came here because I recognize that most people don't know how to deal with what we are all facing. I've tried to say what I need from friends and they drop off. So I have become very isolated. How do you find the balance of getting the kindness and support you need without expecting too much?
Thank you for listening!
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Sorry an welcome. We love nu people. I know it is scarey bc of the unknown. Tthere r alot of boards get on anyones u want u dont like it leave
Me
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Tamara_R-
We wanted to warmly welcome you to our community. We're sorry for what brings you here, but are so glad you found us. We know how important it is to have someone to listen, to offer support and a shoulder when you need one. We hope very much that you find that here.
In addition to this topic, you may also want to visit our Brain Mets Sisters thread. Connecting with people who're in a similar place as you are can often times be very comforting, especially if you're not getting that from people in your outside life.
Please keep posting, we're all thinking of you!
The Mods
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Hi Tamara. Please share your feelings with us. There are many good listeners here. Many of these ladies inspire me to keep living, while also making plans for what's to come. The ladies here will help with that balancing act.
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Hi Tamara, I know what you mean. I started out with a number of friends,and now I'm down to two. I can hardly stand to hear people complain about their little minor aches and pains. I want to ask: seriously? Are you for real? My body has turned against itself with no cure, and all you have to do is take a couple of Tylenol for your ailment. These are great ladies on these boards that will listen and offer support.I stay away from negative people. I told my husband today that I'm going to have to find someone to hang out with, because he has retired and became a real couch potato.0 -
Hi Tamera
I am sorry to welcome you but this site will definitely be of much solace and help to you. It's so difficult to feel like anything is the same in your life after a stage four diagnosis and it's not the same. I find myself thinking of how sad people will be after I am gone, planning a menu and music for my service; at first I felt bad that I was allowing myself to go there but now I just give myself a hallpass. Sometimes my family seems so wrapped up in their own problems I want to shout what about me? Can you possibly know what it's like to go thru this? I feel like I have to take care of so many details before I go it's overwheming. Please allow yourself to express whatever you need to here, because this is where everyone understands what you're going thru. I think people around us are scared and that makes them uncomfortable-so they throw those be positive platitudes at you. You don't have to always be positive..it's ok to be angry, sad, afraid ... I hope this rambling message makes sense and please post whenever you need a compassionate listener
Cisco
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Tamara,
Lots of support here, you are not alone. I often want to say "Really, that is all you've got!" People have no idea. On the up side for me, I really do not sweat the small much anymore!
Stay in touch
Nel
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How about just asking, "Wanna trade?" Maybe it would make them think and at least appreciate what they have.
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Cisco, I couldn't have said it better. Thanks for putting into words how I have been feeling. Sometimes my family thinks that being in remission means I am cured and should get all thoughts of cancer from my mind!! But I can't. It's with me everywhere I go. If I'm having fun I wonder is this the last time before the beast comes back and I get sad. If I am sad and in pain my family says well at least you have beat the cancer so don't worry. Thankfully I have a dd who is a nurse that I can talk to that understands. Once you get a cancer dx, at least in my case, it's always there in my mind! Maybe I need to talk to a therapist or somebody who can help me.
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My last onc told me to stop looking at bc.org so much. I'd told her about so many sisters...here & then gone, so quickly. She said that's how it'll be, I'll be fine, treatment will stop, and I'll die....so I need to quit worrying about it & live life. I was stunned! She'd seen me through 3 dx, said I was her favorite patient, had gotten through first & 2nd treatments easier than any patient (said I was a poster child for chemo), we hugged always...and I knew she was a tough old bird...and that she's smart! But it broke me heart to hear her be so calloused. I told her you're all in the trenches with me...it's not "internet stories," it's real life, with real stories, my stories!!!! Now I find my onc wasn't well & I've moved on to a new one...and I've forgiven my old onc. But my new one has written articles for bc.org....I'm so happy! Love you all.
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You all are AMAZING! Thank you for all the kindness You may being seeing me on here more than you like soon! lol I have spent most of my life believing in Balance. Not always living it.... But believing in it. I have never looked at the world thru rose colored glasses. "It is what it is. Now how do we make the best of it?" Has always been my life motto. Now here I am planning my death (alone) and trying to live for now (alone). I lost my Mom when I was young. Step Dad dropped out soon after. One Brother died, the other is emotionally distant. I worked hard, long hours. Had a simple social life. The one thing I always wanted in my life was a family of my own. I had several ltr but never found the man I wanted to marry and have a family with. That by far is my biggest regret in life. But that also is why I find myself here. I am single, live alone(yes I have 2 cats!). I had a small circle of friends from work (those dropped off first time thru in 2011). The new circle has been dropping lately as well. Add to that, they all live far away, have jobs, lives etc... I can't drive. What do you get? Isolation. I understand everyone is busy and have their own things going on. But I find myself feeling like I just don't matter. I am planning out and preparing everything I can for my death because I feel like a burden. Once a month or so, I get to do something with someone and I appreciate it, but I can't be real with them. It hurts too much to get the "Oh, you'll be fine" or even interrupted and talked over. so I smile, joke and listen to them. I realize I am slipping away and I am trying to gain some traction.
Craft projects helped me thru last time. I am about to begin making Christmas ornaments for everyone ( a message in a bottle theme). Though it will distract me, it isn't making me feel more connected. What do you ladies do to keep from withdrawing?
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I will read through more posts later - I'm sure there will be some comforting words already written on this post, but I wanted to ask anyone on here right now - is anyone else afraid of dying? I know we all do it. I used to be an ordained minister for 15 years and believe I helped a number of people who were sick and dying. But I no longer really believe and moved on in my life - I have some great memories of the work I did and some not so good. Anyway...part of me is afraid that I am wrong and that God won't forgive me. Part of me is just afraid - even though I should have at least a year or two left. I really don't want to see a light or float above my bed. I just want to go quietly.
P.S. Don't worry if I sound depressed - I have an appt. with a psychologist (good one whom I've met) really soon and Ativan and anti-depressants. I've had recent progression, am on chemo right now.
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Nope not afraid, looking forward to seeing people i miss, an sad about not seeing grandchildren growvup though
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Hi tamara, you can talk to us. We understand the serious nature of your dx. I will pray for you to beat the tumors back. I listen to friends worried about trival aches and pains
I have been dealing with bc since 2011. I am high risk for reoccurance I deal with it by denial. I dont think about it until I hear otherwise. Then I hear about bc sisters passing and I get hit with the reality of what we are dealing with. I pray for a cure for all of us.
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Tamara- I can feel the pain and isolation in your post. You know I thought about some of the posts from some of the kids who kill themselves and take others with them at times- mention being around people all the time and never feeling "connected." The kids and neighbors all say he or she was so friendly and seemed fine- "we never knew this kid was in turmoil." I think our culture is such that it sends messages to folks to be "independent," "self sufficient" and "don't burden others-we all have issues." So folks hurting can be awash in people and suffering just as much as those utterly isolated. This paradigm doesn't work when you are chronically ill and it isn't one used in traditional cultures. The big extended families of simply village life all over the planet expect to be a part of your life, good and bad/ sick- group effort. Together we live and together we fail and die. When people get sick, physically or mentally (or both) in this culture the expectation is suck it up, put those big people panties on. ugh... why? If you need help- you need it.
When I have been really sick it is just too hard to go it alone. It does help to have a social network. I think asking for hospice early and to be linked up with volunteers to assist in whatever way you need is good! If you were old and outlived your family and friends, it happens all the time- folks expect you to ask for help. We as cancer patients are young but in the same boat - need wise. I have been a hospice volunteer and it's great work. You meet lovely folks and yes you sit with them on the journey to passing away. It's ok. We learn from each other. It's a universal path. Dying isn't scary. The volunteers want to be there or they wouldn't be. So use them, think of it as a present to yourself. You might make some friends on this journey if you keep an open heart and ask for help. Sometimes meals on wheels volunteers can provide company and sustenance! Look in your community and see what is available. Some places have some super cool programs to link folks together. And of course... BCO. No one understands like those wearing the same shoes trudging the same path!
You know I just thought of something else. I am an animal person, so we have quite a few (3 cats, 3 dogs canary..). I have to have a pet or I am sad. I knew a nurse who did shift work and liked to travel, no kids, not married very independent. She liked to foster kitties for our no kill shelter. She said she loved it. I asked did it hurt to give them back? yes she said, but then she knew they got homes because they were loved and played with/ socialized. She got an endless supply of goofy kittens! It's pretty hard to feel blue with a kitten going bonkers all over. Laughter and distraction are good things.
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Reader123, I am afraid of dying and death. I am afraid that it will be protracted and painful and undignified. I'm afraid that if hell exists I'll be there (ex-catholic guilt). I'm afraid that there's nothing there. I don't want my children to spend days and weeks watching me deteriorate. I don't want their memories of me to be dominated by how I am now and my death. I want to die painlessly, peacefully, swiftly in hospice or hospital. I hope there is a heaven and I'm in it but I lost my faith a long time ago. The best I can believe is the collective unconscious. I wish I had the comfort of belief in a religion. I see the consolation that their faith brings to people and I respect their beliefs
My mother had a long, long death eight years ago and I believe that she was in pain though she couldn't speak because of a stroke. She used to groan and her doc said it was just an exhalation but my sister and I persuaded the registrar on night duty to up her morphine and she stopped groaning and was more comfortable. When my uncle was dying of prostrate cancer two years later I was the only one with him (small family) and he was so thin, like a skeleton clad in skin, unable to speak, move or anything. Remembering my mum, I felt that he was in pain and that he could hear though the hospital told me that he was unconscious. Long story short I held his hand and asked him to move a finger if he could hear which he did (the merest flicker) and asked him if he was in pain when his palliative care doc was in the room and again he barely moved his finger but it was enough and again he was given more morphine and the relief was evident. It frightens me that in my experience the possibility of people's increasing pain as they die isn't considered as their abilty to communicate diminishes. Also after they died their faces were bound up under their jaws and tied with a rag. It looked horrible.
I watched a programme by channel 4 in the UK titled 'My last summer' about a group of terminally ill people. It's worth seeing. They're a courageous, beautiful group of people and tell it as it is. One of the things that happened to a participant was when she was very ill in hospital she became incontinent and wet herself and the care assistant who came to wash her used just one basin of water. She said she stank of piss until she was strong enough to be helped to shower. Having to use a bedpan and have someone wipe my behind horrifies me and I'm terrified of becoming incontinent especially doubly incontinent.
Sorry for too much info and going on at length but these are some of my fears about death and dying that keep me awake at night....
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Tamara,
You found the right place to come and share your feelings. There are lots of suitable threads. Read through some of them TIL you find a place that fits! I love the quotes thread. It's positive thoughts for the day. There are threads specific to treatments, what kind of mets you have, etc. There's even one called like life doesn't end at stage IV, really. You will definitely gets the support you need here at bco.org. Blessings, glenn
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