A place to talk death and dying issues
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Has Rosevalley left this thread or the whole board? This is a place where we all come to share our hopes, fears and difficulties trying to be what others want us to be - everyone on here needs to understand that some of us are hurting more than others because of the sudden upheavals with Stage IV - don't feel like the mods needed to get involved, it seems heavy handed to me.
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Sandy - I agree with you.
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Jul 23, 2011 08:42PM ma111 wrote: The one thing I havn'et much thought about is how I want to be remembered. Not badly of course.
Mar 19, 2012 06:43PM ma111 wrote: I don't think paper mache would hold the weight of my body. I stick with renting the wood one. I might do my own picture thing though. I don't trust my family.
May 1, 2012 08:01PM ma111 wrote:
This is one of the hardest things to do, however, it does take stress off of you. I can send you a box of Kleenex. This is the best thing you can do for your family
May 2, 2012 07:07AM ma111 wrote:
In regards to leaving our children is what encouraged me to get my final papers in order. It really seemed to take stress off of me when I was done with them. I am a single mom and my daughter never knew her father as he chose not to be one. She was 16 when I was first diagnosed and I didn't want her to half to make any decisions for me. She is 18 now. My sister is in charge of everything, even the house and life insurance. In January after I was admitted for cellulitis 2 of my siblings came in town. We reviewed everything and my daughter wanted to take part in it. She was very relieved that her aunt was to take care of things and not her. She is 18 now and I think that is just too young to plan my funeral, living will issues, etc.
It also took stress off me because now people know what I want and do not want. It makes it easier to live life now. My Palliative care doctor and I had a 45 minute appointment and took care of all the end of life issues. It is in the computer for any health care provider to view. I also have a pink paper hanging on the side of my fridge in case an ambulance comes for me. It has her paper number on it for anyone to call.
My ashes are going to be buried for my daughter to have a place to visit. It's much cheaper that way. I also did a rental casket for the viewing. Cheaper then buying one and the rental is wood. I picked out the cards, book and pen. I signed over an annuity to the funeral home.
May 9, 2012 04:44AM ma111 wrote:
What a loving person you are! You want your husband to find someone else and all the things you have done to prepare. It has also given me peace to be able to live life to get them done. One of the hardest things was the way family reacts when you tell them things are done.
That is a good idea about the jewelry. That would probably be good for my daughter also. She came up with the idea that everytime she sees a blue heart it will be me in spirit. I agreed. Now if I could just find a cheap blue heart necklace for my sister to give to her once I am gone.
Jun 6, 2012 03:59AM ma111 wrote:
Sas- It's in my home now screwed to the floor in a fire and water proof safe. I also never intended this thread to be for just stage IV. However, considering the topic I put it in the stage IV forum.
Jul 9, 2012 02:45PM ma111 wrote:
I think that you family should know that you are pissed off that your time has come before you wanted it too. That shows love. It is easier said then done, but I have told my daughter I do not like the idea of my not getting to see her graduate from college and develop a family and stuff. It was the start of a good conversation for us.
Aug 14, 2012 07:07PM , edited Aug 14, 2012 07:16PM by thats-life-
Chickadee, that is a very good idea. Ma111 was brave to start this thread, i remember discussing it with her. She needed a place to discuss the hard stuff, we all do. I just saw on my fb that Ma111 passed on Saturday. She was such a wonderful, warm, straight talking, caring woman. I think it would be very fitting if this became a permanent thread. Thanks Ma111, for being there for me.
eta: 21,000+ views of this thread, it is important
Sep 13, 2012 01:34AM sas-schatzi wrote:
folks ma111 died, but what she started here is important, very important. I wish, it wasn't labeled for stage 4, and any of you that have seen my postings have known that to be true.
I know that you are grieving her, but someone hopefully will pick up where she was leading. She had it so right. Be prepared. Lead your family to be prepared. Make special things. Do special things
Those of you that were here had a cohesiveness. Don't let that go. You love each other. Losing Ma was like losing your own mother. Grieve for awhile, but Ma started this thread to take care of people that understood the reality of their disease.
She would want you to carry on and take care of others as well as each other. I'm going to copy this and send it to as many who have posted on ma's page.
When you are ready come back. If you can't come back that is understood.
There is a thread on port placements it was written by tbird57. She hasn't been heard of in several years . I watch her site and bump it b/c every word she had to offer was valid then an now.
Your words are valid then and now and your friendships developed here around Ma are still valid, but Ma is gone. I don't think Ma would be happy with the ending of the thread. She was on a mission. Her mission was to allow people to cope with the garbage and the stupid and the inevitable.
Pass the torch!
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Reserved---thinking
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Sas: thanks for summarizing the essence of this thread. It is important to be prepared, and to have a place to express fear and anxiety. I learned a lot in this thread from various brave women.0
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This thread I come to often. I read, think about what people are saying. I find the open honestly about dying helps me live with more intention. I haven't posted much here if at all. But I ️so read and absorb others posts.
In 2012 all I had was a met to my t4 vertebrae. Rads took care of it. I was good to go. Femara. Easy. I now laugh at myself. "All I had" met to spine.
Well by July 2014 very sick with mets shutting down kidney function. Chemo. Liver lesion. New chemo. Lesion in head. All heck breaking loose. Now a year later stable. Was able to travel in June and I pray again in early August. My life hasn't ended but I am more aware now then ever how vunerable we are and how talking about dying and end of life can only help those of us who visit this thread and need this thread. I have my "when I die" bag all ready. Not sure who suggested but a great idea. Have most of my ducks lined up now so I can just do my chemo. Live. And live some more. Quality changes as you become sicker and the Tx side effects begin to pile up.
Truth. This disease is tough. Progression is scarey. Liver, lung and head Mets are difficult to deal with on all levels. Bone mets are painful. We need each other to share ideas, experiences and feelings. Especially the raw emotions. We have said goodbye to so many since I joined MBC. Stage 4. I feel sad. But continue to live my life as it is to the best of my ability yeah some days are better then others. But I think .....oh yeah. Life
I love what jennifer wrote.
After all; we are just human. And that is all we are.
Love and only comfort. Let's keep this thread going.
Diana
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It's sad when you live long enough with stage 4 to see boards, supposedly built to support a community that needs to connect and share, fall apart over the same tired issues. Power games and pressures to allow some types of conversations and comments and not others. In the joy of living longer, healthier, and with hope, there are now different versions of stage 4's. IIf I'm a stage 4 with lots of disease, pain, and few choices it's okay to rage and be dismissive of the cult of positivity. It's not a crime. If I'm a stage 4 with excellent treatment options it's okay to hope that I'm really a stage 3 misdiagnosed or hopeful of a totally normal life. It's not a crime either. But these conversations can be very hurtful - the lives being lived make it so.
And I do have a bottom line, a board that is not safe for its most vulnerable members is a board I'm not interested in.
In the past boards split or like this one put restrictions up on who could post to protect those being silenced by often well meaning but misguided comments. The different realities of stage 4 now seem to create vastly different needs and desires about what good board would look like and rules for how things can be talked about. We could divide this board and make it safe again. An option. Just saying, having lived in both worlds.
Actually I'd just prefer more listening and compassion.
And good-bye to all the women, once so active on these boards who have died. So many just slipped away. You were missed though and held dear - everyone of you.
Sophie
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I wish we could put this issue to rest. I would hate to to see divisions in the stage IV forum. And while it is true that we do have different needs at different points on the stage IV spectrum, our end point is essentially the same. If we can respect each other's needto express how stage IV is for each of us at a given point in time, then we can be at our best even when times are at their worst. I won't be disingenuous and pretend that I was not a major player in this discord and I apologize for the role I played. I won't demean or mock anyone here and I will stand up for myself should I be on the receiving end, but I really want this to end here and now. Let's stop eating our own.
Caryn
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Sas, thank you for re-posting Ma's words. I miss her, and I know how important this thread was to her. She would undoubtedly be a voice of reason now, always keeping in mind that we're up against something much bigger than ourselves.
I've learned so much from everyone here. I read now more than I post on this thread, but I'm so grateful to have a place to come when I'm scared. Where I can speak honestly, without fear of judgement. We're so much stronger in our diversity, and diminished with each voice that is silenced, or lost.
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But truly Caryn, one shouldn't have to be at their best, when things are at their worst....that is not what the topic of this thread is, and this is not eating our own. This thread has been voicing life, sadly, with an end in sight & just as you say, expressing how stage 4 is for each of us, at any given time. Please honor that and do not silence sisters. My apologies if this is harsh...but I'm saddened that a sister doesn't feel welcome to open her heart to us. We need each other...just as maintended.
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I would agree with SophieJean that a board that is not safe for its most vulnerable members is not what anyone wants. I have occasionally had the feeling of being in the wrong movie with responses to things I've said, but I realized I AM living a different movie! I really hope the Mods have not banned Rosevalley. Ma set the terms of this thread and I believe the Mods acted inappropriately from Ma's perspective, but then again, the Mods are also in a different movie. Mods, may I say this is about death and dying: the usual rules DO NOT apply! I am saying this in a self-interested way. One day I may want to tear my hair out, scream vile curses, vent my pain away, whatever. Shouldn't this be the place to do it, until death do us part? I propose this thread be free of moderation.
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Heidihill - Absolutely!!!!!
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Obviously, I thought it important to bring ma's thoughts together. She was clear in her topic box and she was clear in her posts. She was preparing to die. She wanted to help others prepare to die. Living was day to day. A future shadowed. They're were those of us here with her that the future was unknown, but more visible. We helped each other prepare.
So many have passed. So many raged at what they knew was coming. That's what Rose is doing. That's what Rose was doing. Ma would have said let her be. Whatever perceived slight direct or indirect, let it go. Sometimes the hardest thing to do is --nothing.
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Diana, Bon's Bag. Masterful. Bonnie put a synopsis together on pg 25-26 of all the suggestions that were made by members here in the first 25 pages. Bonnie wanted to do another synopsis of the pgs between 27 to 50. She became to ill. Now it's page 72.
Steelrose I miss her too. They're aren't many of us left from that time. When I was reading to put her posts together. It made me very sad to read the names of all those that have passed. The flip side was the warmth, we felt for each other. I'd forgotten when we all jumped and said "Delete quick", b/c of that awful family member. Ma was gone by page 17. I stopped reading. I'm thinking that out of respect, I should continue reading. Remembering the ones we've lost.
SophieJ Don't go. I doubt this will happen again. I hope. We need a place to rage. Rage at the dying of the light. I've seen that light go out. The eyes. Knowing that the brightness is gone forever. Makes my stomach sink even writing it. We need this place. We need it to be safe
Heidihill and Sandy. I agree
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I think just one post of rosevalley was deleted. I believe she can rejoin the thread or any other thread she wishes Hopefully she will do so. It is our variations that bring so much to these boards.
Sas- Thank you for the post about children. I soooo needed that today!
Nel
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Sas-schatzi and all...thank you for reflecting on a very meaningful legacy...Ma's thread, which I decided to read the first time (a couple years ago) with a lump in my throat, became a very comforting, "I'm not alone & because my sisters have gone there before me, I'm prepared" place to be. This is a place we don't have to be at our best, when times are at our worst...and I expect from now on, there will be the same respect for where each of us is in traveling this path as there always was.
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I heard it once said that life is a series of Rorschach tests, and we are each our own little Rorschach interpreters. We don't really see things as they are, but as we are.
A loss of any one of us is a loss to all. Therefore, may we each be wise and loving enough to accept where each other is on their path.
My dream would be that we only report posts in the most egregious of circumstances, and only after PMing the perceived aggressor and trying to settle any perceived slight between each other first.
xoxoxoxoxoo
Calico
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Quotes that come to mind? (Yes, I collect quotes.)
Where all think alike, no one thinks very much. (Walter Lippmann)
Peace is not the absence of conflict but the presence of creative alternatives for responding to conflict -- alternatives to passive or aggressive responses, alternatives to violence. (Dorothy Thompson)
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I started a new thread last week. It may have value in hot situations. 'Steam Room for Anger'. The topic box defines the intent.
https://community.breastcancer.org/forum/102/topic/833446?page=2#idx_55
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I don't post much on this thread, and there are times that I avoid this thread like the plague. However, I think it is one of the most important threads on the stage IV forum. I hope those that need to share and receive information here are able to resume very soon.
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For those who are interested in all the issues that have been discussed here, there are 70+ pages offering a wealth of information! For those who would like to ask a question, suggest a concern to explore, vent about current situations they are facing, or post in any way that seems meaningful to them, I hope they feel most welcome to do so! For those of us who have made a commitment to this thread, I hope we will receive respect as we sort through our own challenges in remaining present and contributing meaningfully as well. As always, let's hope we can maintain forums for all!
Most respectfully, Brenda
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Has anybody heard from Blondie? I know she got to Florida, but haven't heard from her in quite a while. I hope she's still on her trip.
xoxoxoxoxooxox
Calico
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She was supposed to get back from her florida trip on the twentieth, we had been texting, but she did tell me she was getting pretty worn out, so I didn't want to bother her. She did tell me that to recuperate from her vacation, she was going to spend a few days at her friends house. She sent me a great picture of her, with her grandson right behind her, giving her a great big smile! Awesome to see. I will text her now and let her know she is being missed around here. I just love her to bits!
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Tomboy, thanks for the update on Blondie. Hope her vay-cay was good.
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hi, Blondie Posted On Insomniacs. She's staying an extra week. Boys go home today
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Ladies, I miss Rosevalley, she was going through so much personally, with the loss of Flower and dealing with her own daily struggles. I hope she is okay? Does anyone know?
So many of you women are wise and insightful. I used to be. But my mind finds it hard to grasp ideas or problems. It's hard for my DD's because the pain is so that I forget what I'm doing or say or what I'm going to do. I don't cook, clean, garden etc., because I have not been able to, that is why I have 24/7 care. I wanted to just clean up my bathroom the way I like it to look and I've been in bed on my back unable to turn or sit up for the last couple of weeks. Can't even sit up in a chair for lower spinal mets and hip/femur mets pain is so that I pass out. I find that someone has to wake me up to give me liquids so that I don't become dehydrated, I'll sleep 18 to 20 hours a day. Two days ago I woke from a sound sleep hyperventilating (Thank goodness I'm on oxygen), I had dreamed my own death. I wasn't ready to go. I screamed that it woke everyone up. I have scans this week to see if this trial I've been on has worked or not? I'm so tired don't know if it's worth it. However, my daughters want me to keep trying they want as much time as they can get. However, I see how much I've deminished while on this trial. Also woke to no feeling in the outside of my left arm and my pinkie and ring finger on left side. Had neuropathy for years and that all went away with this trial this is something different. Wanted to share a poem about death. But just writing I'm feeling too weak. I'll try back later. Love to all you ladies.
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Oh, dear M360... Scans this week is good, but it sounds like you need to contact your Oncologist today. Does he/she know the pain you're in? They need to provide you with some relief! Please don't just wait this out! Hoping your trial is pushing back hard on the cancer, and that's why you're feeling so bad, but in the meantime, get something good for yourself!!! Prayers and gentle hugs!
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Open Letter to the Mods: As each has expressed their concern about Rosie, I now need too. I brought Ma's words forward because they define this place. It's to prepare for dying. Not just the physical things like headstones, liturgy, songs, or Bon's Bag. It's a place to express what we feel as death approaches. It is not a place for some to talk about how good they have it. Those thoughts are for elsewhere. If a person doesn't see this than members either saying it or you saying it should be the approach.
Rosie said it to begin with, and it wasn't listened too. The communications got hotter. Rosie doesn't need to hear how good someone has it when she is mourning the loss of her life, her kids, and DH. Young kids in their teens. Kids with disabilities that had a rough start in life that were born a half a world away. That she and DH brought home from orphanages. One child they were told would never be able to lead a normal life b/c the emotional damage was too severe. Through their love, this child is now as normal as they come emotionally. Two of their children are deaf. In their home country, It's unknown what would have come of them. Her and her husbands selflessness is rare.
I suggested that Rosie come to this place. From her first posts you could tell that she understood. She is a gifted writer at expressing the horror of uncertain time of death. A death you now that it is coming closer. Her anger and outrage expressed here at not receiving care that others received that was refused to her was good in that it allowed the feelings to get out of her. Analogous to a primal scream. Others gave her suggestions and support. She gave support to others.
The sad part now is Rosie is gone. The sad part is I can't say the direct thing that needs to be said without fear. Ma would not have been happy. I think that Ma would reach out to her. My hope is that you reach out to Rosie and encourage her to come back.
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M360 - My heart goes out to you. Prayers and big hugs coming your way.
Rosevalley - I don't know if you're reading this thread but although I'm not very active on this thread, I read it all the time. I miss you, I miss your input and your wisdom, your humour. I miss you period. You are in thoughts and prayers. Lots of hugs and love coming your way.
Yay for Blondie who is staying longer in FL.
This thread is important and invaluable. Sas - thank you for your post. It touched my heart.
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AMEN! Thank you Sas.
Dear M...I agree with surfdreams that your onc office should know the extent of your pain. I'm glad you have help...let them know how you want the bathroom to look (I'd come clean for you & it'd sparkle...I love to do bathrooms!). Will your daughters get you to your appt? Worrying about you, praying that something has to turn around & if this trial is taking you down so badly, maybe they need to find another answer. Hugs to you.
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