A place to talk death and dying issues
Comments
-
And more gratitude and thoughts: Spicypetunia, for bringing your unique voice to this thread and adding some great resources. I have the Go Wish cards, too, and they are interesting to explore. I'm relieved for you that you have help from a palliative care doc and that your husband and mom have not only "come around," but also that you've found a deeper sense of connection with them. You sound as if you will be a positive presence on this thread, where so many work hard to be authentic, to create a safe space for exploring end of life, to keep making meaningful connections............Bon, for reminding those who are interested in your comprehensive list of things to do. Quite honestly, when I first read that list, I felt overwhelmed, but then I realized several things: 1) There is no one right way to handle end of life matters. 2) What is important to Bon -- or to someone else-- may not be important to me. 3) I and my family will experience our time together more meaningfully if I find a balance between "doing" and "being," and "being" is still more important than "doing." 4) I can trust myself to do what I need to do at my own pace and not judge myself if all the tasks don't get completed. And, Bon, I'm going to trust that you take no offense at this and welcome others taking and using whatever works best for them! My instinct tells me this is so, and I hope my instinct is right........Kath, for sharing your story with us and allowing us to see your struggles, with hope that you will find this space to be helpful again, and that you will find a healthy balance of being with and doing for whatever time you have remaining. Is there any way in particular we might help you to find peace of mind?.....Xavo, for being so kind to Kath. I recall so many lovely nature photos from you. Is your connection to nature one of the ways that you find wholeness and healing in your life?..............RoseV, again, thanks beyond measure for the Lew Sarett poem. It really touched me. I'm so sorry you are not getting a break from your awful, terrible, horrible symptoms! But I am relieved that you are loved and that you find this place again and again to share your self so openly. Thanks for considering yourself and all who gather here worth it..............Bon, for making an effort to be seen and heard. I also read your post before it was deleted. I particularly recall you talking about "standing in your truth." I am sorry that it seems that you only get responses after you erase or edit. I saved your post so that it would remind me to respond when I was well enough to do it, in part because it seemed to come from such a genuine, heart-felt place, and because it asked so many questions that I think are important to ask. You and I have been around BCO for a long time, and we share many of the same experiences, but, of course, in our own unique ways. I'm always amazed at the number of people who think that acceptance = giving up. Sometimes I find myself angry when others judge someone's decisions about no longer pursuing therapy or even certain kinds of therapies in a negative way. So limiting, unenlightened, unsupportive--of course, it speaks often of a person's own unresolved issues and little about the other person, but how many want to explore that?...........and Stephanie, for sharing your kindness, your deep desire for connection, for the Remmel quote. I especially appreciated " If someone wishes to deny me that choice, it sounds to me like they are saying: I am willing to risk that your death will be slow and painful." How many us reach the point where we think it's not death itself that is frightening, it is the prospect of suffering--particularly of unnecessary suffering--that is so frightening? And for those of us who have suffered from medical neglect or flat-out incompetent care, what a challenge to pull together all our resources in order to have a "good enough" death! I hope my plan will help me to have a "good enough" death. At least I find comfort in having a plan. In lovingkindness to all...............................
0 -
Bon so sorry for all your potholes in this life we've been traveling. A break is always understandable.
I admire everyone here. I don't think lack of treatments mean giving up. I don't think assisted suicide is giving up. We are much kinder to our pets than we are to ourselves. No one knows unless they've walked a mile in your shoes how they would feel/what they would do.
I have had some misdiagnosis too. Nowhere near your extent. I choose not to sue, to conserve my energies for things that bring me joy. I don't want or need that drama. Same reason I chose not to reconstruct. I didn't want endless surgeries or recoveries where I couldn't play with my children.
Yes I want to be here as long as possible but quality over quantity. I don't want my children to watch me suffer so that probably means hospice/hospital. Not the most comfortable but best in the long run. They are awfully young to experience me dying at home. And quite frankly I doubt my husband could handle it.
It's a balancing act.
0 -
Wow... too wiped out to read everything. Yesterday was awful and last night was worse then that. I have decided there is no more fight left in me. I will sign up for hospice today in hopes that something, anything puts the skids on puking relentlessly every 4-5 hours. my throat and stomach is killing me. That poem just makes me long for sweet permanent relief. A pass out of cancerland to peace and release.
May all beings be free from suffering and be happy and may I be one of them. Blessings to us all.
0 -
Ladies, on a related topic - Fellow cancer warrior Jen has Stage IV, triple-negative cancer. She is 33 years old and the mother of two young boys. She makes an impassioned argument in support of death with dignity laws:
https://youtu.be/GL9MTb4OOnQ0 -
Good morning everyone! Greetings from New England! Stephanie said her flowers in her garden now can't wait to bloom, here we are experiencing a bitter cold weather system still. Nevertheless, spring should not be far! Rosevalley, you are making it! Beautiful poem. It's so beautiful to live and die in aesthetic taste and treatment.
Bonnie I am sorry that some people felt they should comment on your medical decisions. It just reflected their decision making process. Your thoughts are solid and insightful. Thank you for sharing.
Brenda and Stephanie, you too, always so reflective, mindful, philosophical, and poetic!
Wondering how Blondie and M360 are doing.
Missing Skylotus.
Hope Kath/Tobycc is all right.
Wish all a good comfortable day!
Last week's snow.0 -
Kath/Tobycc,
Thanks for joining us and introducing yourself here. I'm glad to meet you!
It sounds like we're in similar situations, evaluating what we treasure and want for this next phase of life without knowing how long it will last or how well we'll feel.
I too have abdominal mets and it's challenging to see and feel the cancer's effects on my body. And to know that death is ever present in my life.
I finally joined bco after reading infrequently for years to meet Rosevalley and to participate in this topic/thread. It's important to many readers who outnumber writers by a huge number. And it's important to me to hear from others in similar and different circumstances.
Kath, I hope you'll find what you need by reading here and also by writing to us. It sounds like your immediate concern is choosing how and where to live, what to do for a living. Is there any way we can support you in your exploration - stories? cheerleading? commiserating? just listening/reading?
Please let us know, this seems to be a place of acceptance, loving kindness and safety to bring all of one's experience to share.
welcome and warm wishes, Stephanie
0 -
(((Rosevalley)))
I joined bco to meet you and enter this topic/thread and you've changed my life in so many ways that I appreciate every day - helping me to get my nausea under control, draining ascites daily instead of every other day, seeking better pain control.
Your suffering has also broken my heart wide open - it's been relentless since you stopped eating more than two months ago! Maybe before then, but I remember that threshold moment.
Rosevalley, hospice here in my community has been so very good to me by helping me with life/death changes. I've relaxed around managing my own medical care and am allowing them to do more and more to help me do better and better.
Rosevalley, our spirits and bodies are so strong. Our ability to cope may feel broken, but it seems to be taking a while for my whole being to come into alignment and pass on. This is a blessed time for me.
I wish the same for you. May your hospice choice be the best one for you. May your team support and encourage you. May you be at peace and ease. May all be in alignment when it comes time for you to shift from this form.
Maybe you'll even feel well enough to stop hospice and try more faslodex, if you feel that's in your best interest.
I love you, Rosevalley.
Going off to cry now, Stephanie
0 -
Skylotus I hope you are happy and at peace.
I will share with you all my poem for the end of life; Epitaph by Merrit Malloy
When I die
Give what's left of me away
To children
And old men that wait to die
And if you need to cry
Cry for your brother
Walking the streets beside you.
And when you need me,
Put your arm
Around anyone
And give them
What you need to give me.
I want to leave you something,
Something better
Than words
Or Sounds.
Look for me
In the people I've known
Or loved.
And if you cannot give me away,
At least let me live on your eyes
And not on your mind
You can love me most
By letting
Hands touch hands,
By letting
Bodies touch bodies
And by letting go
Of Children
That need to be free.
Love doesn't die
People do.
So, when all that's left of me
Is love,
Give me away.
0 -
Cheers!!! m360 yes. That poem was in the book of prayers and poems I got for Valentine's Day. Give our love away it's what lasts when everything else dies.
0 -
Zills, yep--a balancing act, one on the high wire at that. I try to imagine that I'm also building a safety net, and that when I fall from exhaustion, or jump because I just can't manage the balance trick anymore, or get blown away by a mighty wind, I will fall or land safely in the hands of the universe. It's imagery that brings me comfort.
Yes, Rose, May all beings be free from suffering and be happy and may you be one of them. My thoughts and heart are with you as you explore your hospice options and the possibility of comfort and peace.
Xavo, as one who lived for more than 15 years in areas that had abundant snow and who now lives in an area where snow is rare, thanks for the gift of snow. I recalled my one and only sighting of a snowy owl when I saw your photo.
Stephanie, hope your tears bring healing to your heavy, kind heart.
M360, deep, heartfelt thanks for sharing your poem. Its message is so powerful. You are kind and generous to share it in the midst of your challenges. Please know that I and others here think of you often. Glad to know you are staying connected to us.
Blondie, how are you?
0 -
Rosevalley, not a fix-it, but a flash. Didn't you write that you like your home health nurse(s)? Does that agency do hospice too? Maybe you can keep an established, workable relationship with a nurse while developing a new one with a new doctor.
So much love, Stephanie
0 -
I want to thank all you ladies for all the information and input that all of you have been posting. I watched the movie on Netflix, "A Woman Like Me" that one of you posted was interesting. I printed out the When I Die Bag and will go over it with my daughters later in the day.
I had scans done last week and I have new tumors in my left lung with over half filled with fluid, breathing is getting even more difficult (I'll talk to this issue later). I have new tumors on three of my vertebrae which means that now every vertebrae from the base of my head to the end of sacrum plus the ilium and hip bones, marrow and femurs all are filled with cancer. Plus new tumors in my stomach and in and around the aorta. Four more lymph glands which now is over 15 with cancer. New tumor in the liver and kidneys. So the trial I was on kept everything stable for almost 11 months but now things are growing and cancer markers went up 300 points in the last month and my weight I lost 27 pounds in three weeks then four days later gained 12 pounds back with fluid in legs and stomach.
All this news didn't phase me for it's what is expected as the body begins shutting down. However I had the scare of my life yesterday.
It was my daughters 21 birthday on the 14th, which was my goal to live til she became and adult. She so much wanted me to go out to dinner even if I didn't eat just to get out. Well I tried but failed big time. After about 20 minutes in the car my breathing became labored and I began again my sweating like a pig, thank goodness I brought along a change of clothes, so here I was on the side of the highway with my daughters wiping me down with wipes and a towel and helping me change into dry clothes then all of a sudden everything went blurry . I could not focus and I could not see or read a street sign. I started losing feeling in my face and in my feet and hands, then everything went black for about a minute. Never before had I experience such a deep dark blackness it was if I was in a black box, and then the shaking began. My daughters immediately moved me and began rubbing my feet and back having me lay down in the back seat. After I could talk and understand what they were saying they gave me Venlafaxine and Cyprooheptadine for my sweating ( The lady in the movie talked about how they give such for the sweating and like me she wondered how and why they work as they do for such.). They upped my oxygen to 6 gave me morphine and got me home in which they had to carry me in and put me to bed where I don't remember anything but waking up at 5am in my home. I slept for over 16 hours.
I truly think I beat death yesterday. It's left me realizing that I too must finish my books for my daughters and I needed a check list and wah lah, you ladies put them up so that I could easily begin to make sure things are done that I've put off. I think if I gave in that I could close my eyes and I could leave this world, but my daughters are not ready yet and I need to put some major energy into making those final things to a finish. I've already gave away all my things and those special family jewelry has been given to each. My car was signed over to my daughter last year and so I have nothing else to do. My daughter takes care of any and all money and banking that is needed.
So this is what I've decided to do. Live these days with fun and laughter and no more tears. I've been bald for the past three years but in the past two month I have some white hair like a buzz cut but I went online to Articfox which is a natural hair coloring company and I'm going to go a beautiful blue or purple it last for about a month. I've never did anything wild like such but I'm stepping out. My daughters today went to Sephora and got some eye shadow and make up for me to brighten my face up and not so pale and deathly. Plus after watching the movie A Woman Like Me, I realized I have video cameras and editing ability and I never let people take pictures of me, I was the one who took the photos not the one in the photos. Seeing that movie I thought my daughters would love to have some videos for later in their lives so I'm going to get out of my old comfort zone and video myself for them. I don't know how much longer I have or if I can continue to walk to the edge of death and then come back. But something major changed within me yesterday I lost a part of me but found what is left is thankful and wants to not waste it in bed so much.
Thank all of you for thinking of me and all these posts with books and sites dealing with end of life is greatly appreciated. When I get energy I look up all and have ordered today a couple of books that have been recommended by some of you. The time you have put in has given me the time to be able to read and research so much easier. Words cannot tell you how much I appreciate all of you and your lives. Your sharing and caring is not lost but soaked up by me like a sponge. I know that my life has been so much more full and dealing with the end of life has been so smooth and easy to deal with because of the knowledge and words that has been posted here.
THANK YOU
0 -
You are all so very near and dear to me. I don't post much, but I read all. You are all in my heart, my thoughts and my prayers, and I hope you find some pain free peace soon
0 -
m360. If you feel up to it would love to know how your hair dying went. I'm considering the same. I have hair but want to shake it up and enjoy life.
Rose. Hope you find some peace tonight.
0 -
M360, what a beautiful, loving post. It filled my with tears but my heart with imaging you with your girls putting on eyeshadow and purple hair giggling away.
Peace and love to all that gather here
0 -
M360, what a beautiful, loving post. It filled my eyes with tears but my heart with joy imaginingyou with your girls putting on eyeshadow and purple hair giggling away.
Peace and love to all that gather here.
0 -
m360...thanks for sharing so deeply, honestly, lovingly. Your spirit shines and shines, as does your love for your precious daughters and your kindness toward us, your companions along The Way. I was struck by your comment: "....But something major changed within me yesterday I lost a part of me but found what is left is thankful and wants to not waste it in bed so much." I will keep you in my thoughts and heart, surround my daily remembrance of you with lovingkindness and hope for comfort, peace, an abundance of love, many moments of joy and laughter, deep connections.
0 -
Thanks to all! I met with one of my board members who knows my endometrial cancer came back
I will retire on 6/30 based on our fiscal year. Am preparing press release this week. I have been putting this off, but it has been on my heart, and I can't physically to it anymore. Stress of hiding 40 lbs since October
We bought a tiny house last year in TN, but DH and I know we can't get out here unless we are up there in person
Stomach pain can't be controlled by 10mg oxy every 4hours. Not sure if it is avastin or the mass.
Regardless of cause, I love this site. My first coping skill is my faith. I
I have to start working on the "bag"
Anyone else have side effects from avastin?
I admire all of you so much. I have really enjoyed reading past posts resources.
My DH (Patrick) and I have fraternal twin boys. One is at covenant college, about 15 minutes from Chattanooga, and an hour from the house. He plays baseball there, and becoming a teacher
Taylor is at Florida Southern in pre med. we told them to night about retiring early. We have told them that if we don't do it no, etc
He has been an absolute rock since August of 14, drains my tube in tummy nightly, etc.
Downfall...when he gets home at night he is done. I don't mind cleaning up, I am using a "grabber" to pick things up.
I am not getting enough sleep so I am taking 5 mg of ambien. On a good day I feel good at night so I stay up
Anyone have suggestions for bony butts? Putting egg crate under me tonight
Butt pads?
The boys don't know the doctor at Moffitt said three months to a year. I would like to be here next spring when the boys graduate
So, that's a little bit of my story
I am 54 Btw
Prayers and gentle hugs,
Kath
0 -
Tobycc- you will work until end of June? I hope that's sustainable. Iam glad you have good support, great kids, DH and faith. Those will all come in handy. Sign up for palliative care as it makes the road so much easier. Wonderful you found our site - a refuge for those on the final leg of the journey. Prayers and gentle hugs for you as you make your way.
love rosevalley
0 -
HI Kath,
Several more weeks of work sound like a lot of work...maybe you have accumulated sick time you can use to care for yourself and close out your house? I get that you're uber-responsible, but maybe your first responsibility now is your own well-being? Just a thought.
I too have an implanted drain for ascites (mine is an Aspira system with bags, not a Pleurex system with bottles) and since last August, I'm draining a liter each day, formerly 2 liters every other day. Don't know your timing or the amounts you draw, but taking a smaller amount more frequently keeps me from a hard crash. I now have a routine - I eat a small breakfast with lots of fluid and some pain relievers and anti-nausea meds, then drain, lie down and sleep for an hour, wake ravenous and eat some heavy protein.
Kath, don't know how long or how much you drain, want to encourage you to adjust to make it work for you as it's intense.
Although I haven't lost the pounds you have, I'm quite thin now - my BMI is under 17 and it's hard to get comfortable. At home I have sheepskins on my bed and sofa and pillows all over the place. For outside I carry lightweight pillows, back support and/or a soft towel. When going places, I try to bring a heavy sweater or jacket I can fold into a pillow for my tush and spine. Also, with the ascites leaning back or reclining are the comfortable positions - bending forward or even sitting up straight are wearing and can lead to shortness of breath.
Kath, these are just tips I've learned over the past 6 months. Please take what you like and leave the rest.
And do share your tips too.
warmest healing wishes, Stephanie
0 -
0
-
WWW.GYST.COM is directed to younger folks (the founder's young husband died suddenly without leaving his wishes or even his device passwords known). She was thrown into chaos of raising young children alone and not even able to contact his family members.
I don't know whether they charge for any of their work, but there's a great check list and forms for all states in the USA.
Blessings, Stephanie
0 -
Kath, an adjustable bed, a memory foam mattress with medium thickness, and a down topper will help the bony butt.
M360, you go!
Comfort to all edge dwellers here, you are in my thoughts.
0 -
rose valley, I pray you have peace and better comfort these coming days. I truly admire you and look up to you. You have journeyed in the most inspirational way, with love and kindness amidst your grief. Your love has been passed on to many. And may we pass that on in our lives too!!
Love ya girlfriend
0 -
I am trying to get the paperwork together for DWD meds. I will pay the 3k and pull out of savings. It takes several weeks to run the paperwork. We had hospice out and they won't commit to anything other than suppositories and zofran for N/V and I have that now. It barely works. I didn't want to sign up if they weren't going to be aggressive. I spent all morning puking. I have fluids running now, that will stop the NV once they infuse. The Flasodex might have caused a decrease in ascites as I only pulled off 800 and I usually fill the container past the 1000 mark. So I don't know if this is a trend or fluke. The N/V is real and miserable. Head in a bucket drooling and choking.. puking. ugh. I am so sick of this. Zofran... CBD tincture.. round and round.
Thanks for the well wishes and the encouragements you are the light in this darkness. I appreciate it so much. May all beings be free from suffering and be happy. ((Hugs))) Thinking of Blondie, Stephanie and all the others.
0 -
I am writing a retraction of what I shared earlier (below). The Compassion & Choices volunteer was a loose cannon who didn't represent her organization, the law or even basic ethics. Though I reported what she said accurately, her information was distorted, incorrect and illegal.
I apologize for any harm caused by my post.
btw, the volunteer's relationship with C&C has ended. Whew!
healing regards, Stephanie 7-7-16
Hi Rose,
I'm in California, not Oregon, but I decided to find out more about DWD here - how it's been done here for the past many years and how our new legislation will change it.
I'm not advocating this for anyone else or even myself, but I met with Compassion and Choices yesterday to talk about self-life-taking at eol and they told me about their cocktail - elavil plus anti-emetic plus ativan. The cost is less than $100 and elavil can be bought over internet, they'd help me get the rx. Also, they'd help me prepare the elavil by grinding it fine, making a slurry and sitting with me when I die. They said others can be in the room with me, that suicide isn't illegal and that they've done this for/with others many times.
Seconal requires a triplicate prescription, while the other drug doesn't, making it easier to get online and by rx.
I looked this up this method online and found these written instructions. Ah, the things you can find on the internet!
Rosevalley, here's the C&C main website. You may need to a referral to a volunteer or staff member in your region.
The new California legislation will make dying more difficult because it extends the process by adding doctors, paperwork and waiting periods, so I feel like I need to decide soon whether I want to get the drugs now, because I might want to use them later.
My body keeps saying, "nope, nope, nope, nope."
And my soul says, "I'd rather maybe take psilocybin and open to the whole experience of living and dying than to end my life unconscious."
I've decided to keep an open mind and sleep on it for three nights before saying nope. Or yes.
Rosevalley, I will support you however I can. You are in a process of sorting out what's right for you. I'm always praying that human helpers come your way and offer you the peace, kindness and love that are your birthright!
very much love Rose, Stephanie
0 -
Rosevalley,
And I do hope the faslodex works for you!
It was easy for me to take, but ineffective against my cancer.
more love, Stephanie
0 -
Rosevalley, I was unable to take the Faslodex allergic to it along with DWD drug Elavil. Makes me go Ummm.
What I wanted to add is that I take Zofran, Promethazine, and Compazine all three at different intervals throughout the day along with a Protonix twice a day. However, once a week I get IV " Emend "which is my god send, it is the one drug for vomitting that works and last for about 12 hours, a nice break from the whole nausea and vomitting and cleaning up afterwards because I loose control of bowel and bladder during each time of such deep wrenching. I know that Emend can't be taken daily but I would ask and see if they could add this to a every other day IV.
My daughters are open that if and when I'm ready they will go along with what I wish even DWD if that is what I want. I will most likely drown in my own lung fluid which isn't a nice way to go. In two weeks we're going to a end of life work shop and look at what is out there and if there is anything new we can do to add to a comfort way for me to go. I want what will be the least emotional for my daughters. My youngest daughter is going to the workshop with me and we speak openly about this along with my Palliative Care doctors. My Onc has also said she will continue to prescribe medications to keep me comfortable and emotionally level so that it will be just drifting off and that will be it. My mother and my best friend whom I took care of both said this is the time and went from being total there one minute to closing their eyes and saying goodbye and with no drugs except what they were taking daily left this world. My friend worked on Wednesday died on Saturday. My mother was sick for a long time but told me this is the day I'm going to go and died in her favorite chair with family and friends sitting in her living room after a full day of conversation about will she see her family in the afterlife and talks about how you know it's time and how she knew it was the day. I've alway knew when each family member was going to go a couple of days before, my family members would say to me "What do you feel" for I've been right with every passing member of my family, so I wonder if I will have that clarity for me? I hope so.
0 -
Rosevalley, Stephanie, M360,
I wish all three of you comfort and peace. I hope each one of you makes the decision which suits her. I pray that you be inspired. Even though we are not physically with you , yet we share somehow the same destiny and share your pain. My thoughts are with you and your families , may we all be free of sufferings. Loads of love and hugs.
0 -
Good morning all, thanks to all who participate in this topic thread through writing and reading. This community has become quite dear to me and I'm grateful for each and all. Feels good to finally start sorting out who's who in this forum.
Rose, so sorry to hear of your local hospice's lack of flexibility and options around nausea. Mine is so responsive and supportive, my nurse offers low-tech, low-cost, low-stress options along with pharmaceutical ones for every problem I've presented her. Yours makes me say, "Grr people, get it together and support your clients!"
Continued prayers for your well-being!
Brenda, thanks so much for your continued participation, weaving us together, sharing your story and providing resources.
M360, you are so amazing! Your every post, every share, provides an important clue for me to find my way through my maze. I so know those terrifying, yet somehow transcendent moments when the body fails and something else enters consciousness. The peace that passeth understanding. I wonder whether we are practicing for death - taking pendulum swings into surrender. Thank you!
btw, in Oregon they use seconal for DWD and when the film How To Die in Oregon was made, the cost was less than $100 for a fatal rx. Prices have since soared and Rose says it's now $3000. If you did choose your route and moment to go, I wonder whether it matters that you're allergic to elavil, if you took enough anti-emetics and ativan, you'd probably be able to keep it down and get to the same place. Again, I'm not diagnosing, treating or prescribing. More like reporting and offering resources.
Every time I think about ending this life, my whole being shouts, "NO!"
So, on I go in the slow mo going Home.
Woody, thanks for your well wishes.
I send my own for each and all, including those who will come later to write and read here.
Sending special well wishes for Bon, Rose, M360, Kath/tobycc, Brenda, Blondie and all the other edge dwellers. Hope to "see" you soon!
with loving kindness, Stephanie
0
