A place to talk death and dying issues
Comments
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Bon, palliative care and now hospice care have been so very supportive of me very strong advocates for my well-being and very creative problem solving.
Fingers crossed for you and warm hugs also much love Stephanie
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Stephanie as you have pointed out- the good comes with the bad, awful with the wonderful. Flip sides of the same coin. Telling the truth that a day can be wonderful and still include puking is not getting it wrong; it's telling the entire truth. Yes I am better then dying, but I am not well. I drain a container of fluid out of my gut every other day and never know exactly what will agree with me and force me to vomit. I always feel "full." My back and joints still hurt and I am weaker then normal. It is life in cancerland in the suburb of metsland...the rents and taxes are prohibitively high in this area. We are forced to live here like it or not. I hope now you are in hospiceland they would cut you a break. It sounds like it's a mixed bag. Praying for your relief and fortitude in the struggle. Lovingkindness your way.
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Rose, just read this and thought of you in particular as well as so many others who face the stiff costs associated with aid in dying meds:
http://www.npr.org/sections/health-shots/2016/03/2...
(Quote) Under the California aid-in-dying law, it is optional for health insurance companies to cover the costs of the practice. Most private insurers plan to do so, according to the California Association of Health Plans. So does the state's Medicaid program.
But for patients who aren't covered, there is a cheaper alternative: a three-part drug cocktail that can be mixed by a compounding pharmacy for about $400.
Grube says the cocktail works just as well, but doctors usually don't prescribe it because of the hassle some patients have to go through to get it. Seconal, on the other hand, is a ready-made pill, routinely available at most retail drugstores.
He says advocacy groups like Compassion & Choices are working on campaigns to reduce drug costs and to educate doctors and patients about the law.
"My dream is that any Californian who will choose aid in dying would have few burdens or barriers to jump through," Grube said. (End Quote)
My dream? Any American who chooses aid in dying would have few burdens or barriers to jump through!
Thinking of you all, with hope for comfort, connection to that which is most meaningful to you, peace of mind, moments of joy.
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Bon I feel so badly about what you have gone through and I don't know the entire story and if any references were made, that made you feel badly, I bet they were done totally by accident. I have also been through way too much too and yet oncology is the only game in town. I kept changing doctors until I found one that was ok. I thought the one I had was ok until I had a paracentesis and he wasn't even going to send the fluid for pathology. I refused to continue taking the afinitor. My confidence after that episode tanked. I have always had a hard time being compliant with miserable side effects and bailed out of treatments even when they were working. Doctors don't like patients who don't suck it up. I find I get punished and they just don't try after you have bailed out of a treatment or you question something. There are lots of things I have wanted to try and wasn't given the opportunity. Things I asked for- refused.. it's a weird game oncology. I wish I could tell you why or how it works, but I haven't figured it out myself.
I do know there are too many scripts I use every day that my life would be sucky horrid with out.. (reglan, zofran,ambien, pleurx bottles and faslodex - DWD med too) so I have to come hat in hand begging for relief. It wouldn't be manageable without doctors orders. This oncologist is very nice and tries - which is good cause it's an hours drive to get there. I have managed to find an excellent PCP who listens! So they are out there but wow what a haul trying to find them. My PCP is local and I found her by chance. Keep trying. If you don't treat the cancer it will take over and you will be in pain. My Grandmother died of IBC 13 nodes positive.She had breast cancer on the same side as mine. She died after 3 years; Tamoxifen kept her alive since it had just come out. The cancer went into her bones, brain and organs. She was a fun loving, God loving person. It was hard to watch her death years ago before hospice.Heart breaking. It's been hard having BC same as my Grandmother and my Mother's Sister, Great Aunt.. and we are not genetic carriers. Breast cancer sucks. Keep trying to find another provider. You will find someone out there to treat you kindly and like you wish to be treated. I know it. Have faith. (((Hugs))) Oh and keep telling your story we have each other. Really who else would ever know what we are talking about except another person who has been through the same experiences.
love rosevalley
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- oh, Bon. What a terrible misunderstanding! I love for you to speak your truth. That's what I want you to do. I was reacting to -you calling your own truth whining. I want you to speak your whole truth here. You are important to me and this topic is an important place for me to speak my truth too that includes the really crappy parts of being so sick.
I am reading and typing on a cell phone. So I will go back to what you said and respond more in the next box. I am so sorry for the misunderstanding! I never want you to self censor. Nor do I want to self censor either.
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hi Bonnie if it's better for you I will stop responding to your posts. I know that we've had two misunderstandings that have both hurt you.
I do wonder whether you've confused me with somebody else because I have never seen the anniversary topic and only got here in November.
Again I am so sorry that anything I wrote has added to hurt and pain in your life. That is never my intention with anyone and certainly not with you. I too have suffered life threatening and life Long harm from modern medical care so I relate to you deeply.
Stepping back to give you space. Stephanie
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Stephanie you just joined BCO in 2015 and the references Bon referred to were from years ago before 2012. I joined in 2012 but wasn't terrible active.. kind of shell shocked by wide spread bone mets. I think maybe our posts just hit a nerve... a painful tender part of history. If it was anything I did or said, I am sorry Bon.
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I have an ongoing issue I need empathy & advise on. I was raised by a staunch Pentecostal Christian mother, and many of the family/friends in our lives are also Christian. I left organized religion a long time ago, and subscribe to humanity, love, kindness and being present in relationships and life itself. I get so frusterated with Christians who ask me how I'm doing, only to briefly listen, and then proclaim "well don't you worry, Jesus is going to heal you". "Everything is going to be fine, Jesus will heal you". "Jesus has a plan for you, and he's going to heal you". I don't believe in healing, I believe if God is going to intervene, He will send someone to find a cure for all breast cancer patients. Regardless of what I believe, I feel so invalidated when I receive these responses. I want to scream "Well, it's been almost three years of ongoing treatment and God/Jesus hasn't healed me yet!" Or. "So, why did God even allow a recurrence?!" I feel like Christians use this phrase as means for denial, or as a default saying when they don't know what else to say. Some would say it is their means of offering hope, but I don't find hope in it. When someone doesn't see agreement in my eyes, they have made me feel like my lack of faith is why God hasn't already healed me. If I just had more faith, I'd already be healed. Really, that makes me feel like God is intentionally punishing me, which DOES NOT describe the loving omnipresence I believe in.
I guess I am looking for Christians to validate without judging. What can I say to people who respond to me this way? I don't want to get in a theological debate with every Christian, but I just want them to acknowledge that I am facing death and while I am not afraid of it or what may be in the after-life, I have feelings of sadness over the prospect of hurting the ones I leave, such as my husband and kids.
Thanks for your time
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HI Shelley,
I have a few of those types of Christians in my life too and have developed sayings and systems to help me deal with them in a firm, but loving way.
I say, thank you for caring about me and my well being (even if I think they're guilt-tripping me).
And, I change the topic ASAP - these aren't safe people to share my concerns with!
I'm a bit of a California hippie dippie, so I also put a shield of light around myself whereby all prayers, wishes and thoughts are transformed into "what's best for my ultimate good". I really don't want pity or stupidity or bad voodoo piercing me...or Christian prayers that are directive that I accept Jesus Christ as my personal savior.
Here are two articles I found helpful for dealing with stupid phrases from well-meaning but clueless people.
Stupid Phrases for People in Crisis
Everything Doesn't Happen For A Reason
Glad you are here and looking forward to getting to know you better, Shelley.
warm regards, Stephanie
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Stephanie both articles are winners. It is remarkable what others will say. Silence and being with someone in solidarity and support without using words doesn't often happen. Too bad. When things are shitty, they are shitty and no one has to remind us.
Welcome Akshelley. We can just be here for you and no words will fix it. Of that I am sure. It is helpful to talk about it though. Otherwise it festers and I start muttering to myself. Cats and dogs are terrific listeners when all else fails!
(((Hugs fellow travelers)))
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I need to retreat from this topic and bco for a while now.
Again, I apologize for any hurt or harm I've caused anyone.
Yet, I need to be with people in a place where I feel safe to be fully myself and this isn't happening here now.
Yes, I now see my offending post and will delete it.
Sad to take a break, but it's necessary for my well-being and inner balance, Stephanie
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Oh akshelley, my heart aches for you in hearing what those people said to you.
I think some of those people have never personally faced a difficult situation. They are insulated, and they believe what they say. It's almost like the "blame the victim" philosophy: if I eat right, exercise, and do X, Y, and Z, I will be healthy, avoid cancer, heart disease, and diabetes, and live a long time. Or have a perfect pregnancy and a healthy baby. Similarly, if you do get sick, but believe enough, you will be healed. That's all fine and good if you don't get sick.
Well, it's not so simple. People get cancer, heart disease, diabetes, even if they do everything "right." Statistically, between 20 to 25 pregnancies end in miscarriage (no matter what the mother does). And many people with a very strong faith, get sick anyway and are not healed.
Even this author from Ecclesiastes 3:1-8 understands:
There is a time for everything, and a season for every activity under the heavens:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to buld,
a time to weep and a time to laugh,
a time to mourn and a time to dance...What can you say to those people? Yes I do believe in God, but I don't believe He will heal me of cancer.
I'm so sory that those people have hurt you. I don't think that was their intention. I think they were trying to help you feel better.
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Stephanie, I'm totally lost. But I think it's unfortunate that you should feel the need to retreat from the boards here. I want you to know that your intention to use the time you have to support your fellow BC metsers has been well received and highly appreciated across the boards, and that you are warmly loved and greatly respected.
Bonnie, I also want you to know that you, too, are warmly loved and greatly respected across the boards.
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What is going on? How about forgive and forget? Or you'll be tortured with repeated viewings of the movie Minions... which is the most inane cartoon movie I have ever been forced to watch. The things we do for our kids. Oy.. yes my DH and I agreed to this.
Anyway I hope everyone will reconsider.. since there is room enough for all. Cancer is drama enough for anyone's lifetime.
I couldn't sleep, will add to this post and thought I would practice Metta. Sending out loving kindness to you both.
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As I was reading the earlier posts, before they were deleted, I was filled with sadness and concern. I struggled to find the right words that might help bring a different perspective. I recalled reading this quote, "Wth our thoughts we make the world."
Sometimes we create whole worlds of suffering with our minds. One way to confront the suffering that our thoughts cause is by questioning the validity of those thoughts that cause us stress and suffering and to explore other possibilities.
"The Work" of Byron Katie guides us to choose a thought that causes us stress and suffering, then to ask ourselves questions about that thought, doing so in a meditative way so that we open ourselves to our hearts and deeper meaning. (It's not just an exercise to change one's thoughts.) Here are the questions:
1. Is it true? (Yes or no. If no, move to 3.)
2. Can you ABSOLUTELY know that it's true? (Yes or no.)
3. How do you react, what happens, when you believe that thought?
4. Who would you be without the thought?
Then we are asked to come up with thoughts that are the opposite of the original thought that has caused us stress and suffering. This step allows us to explore alternate ways of thinking about our situation, particular others (often those we've judged), and our world. That process often helps us to see that we have created a world of suffering for ourselves and that underlying our world of suffering is often (but not always) a desire for things to be different than they really are. So, in essence, this process is designed to help us find more peace of mind and peace with our life as it is.*
I hope this process will help others who find themselves in the midst of misunderstanding , confusion, and hurt. I've certainly found myself in that spot from time to time, and I've appreciated when others offer different perspectives.
Holding hope for maintaining this space as safe, kind, compassionate, and supportive....
*For more on Byron Katie's "The Work": http://thework.com/en/do-work
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Thank you Stephanie for the two helpful articles. I liked them so much I subscribed to the associated blogs. Please don't retreat from the boards, as I value your input. Thank you to all of you who responded. I am at a loss as I didn't see what has been deleted, but I hope this remains a safe forum for everyone. I see now that I just wanted to vent to people who may have heard the same responses, and have an arsenal of responses when they feel minimilized.
After reading "Everything Doesn't Happen for A Reason", I can see I may not have allowed myself to grieve properly over the loses cancer has stolen from me. I'm 43 and I've lost my nursing career (which I loved), my roles as mother, wife, provider, sexual being, financial security and even parts of my femininity. Never mind my life, when I run out of options. Maybe if I grieve more, I will be less affected by well-meaning but misspoken Christians who emphasize guilt instead of being with me.
Thank you for listening & responding.
Shelley
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Akshelley, I was going to edit and clarify my previous post. But since the edit got so long, I'll let it stand here as its own post.
I don't think that these people are blaming the victim intentionally. I think they believe in a philosophy of a world where the rules of cause and effect are very strong, and they themselves are trying to avoid bad things by following all these rules.
I know many such people who live in these worlds, who do have carefree lives, and have never had a challenge.
These are people such as my FIL who asked me "do you know what you did wrong?" while he was sitting on my hospital bed after I lost my first pregnancy at 13 weeks to miscarriage.
Or the many people told me it was "God's plan" or "God needed more angels" when I lost my second pregnancy at 19 weeks.
Or the people who continue to tell me that "God doesn't give you more than you can handle" as my family struggled through countless doctor's appointments, IEP meetings, treatments, and constantly evolving and cumulative diagnoses for my son (autism and more).
Or the people who tell me "God must have really big plans" for me since both my daughters are also struggling with special needs.
Or the people who pray that "God will heal" my mother, or my friend that died of cancer two years ago, or the friend that is dying of breast cancer now. Even the husband said to me just Wednesday, "of course we're praying for a miracle."
Yes, I'm praying for a miracle for my friend. However, I don't think it's that simple. Although we read in the New Testament "seek and ye shall find; knock and the door shall be opened unto ye" as well as having "faith the size of a mustard seed," I don't think God just gives us everything we ask, whether or not we have enough faith.
I don't think God just ignores us either. I think God gives us strength, within ourselves and/or through others.
And what if it's too much to handle, or someone dies? I don't know. That is a great mystery. The book of Job tries to explain it, but I admit I have a hard time understanding the book of Job.
On the other hand, I have another dear friend whose daughter has gone through treatment for Hodgkin's Lymphoma: chemo, surgery, and rads. Daughter is NED and my friend says "thanks be to God." "Yes, thanks be to God" is what I say back to her. And I say it sincerely.
Also in the back of my head is, what if her cancer comes back? Would a recurrence be my fault for having these fears? Then these fears become these doubts, and these doubts lead to guilt.
This is the consequence of that cause and effect philosophy, and it is truly too great a burden to bear. I am sorry for the hurtful things they have said to you. So I don't know what to say to those well-meaning but hurtful Christians other than yes I believe in God, but I don't think it's that simple.
For you,I would give you gentle hugs, bring a hot meal to your house, do some laundry for you, and pick up your kids from school.
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Personal integrity requires that I speak honestly, with the hope that it does not create undue conflict or unmanageable tension.
I do not believe that Stephanie is a "mean spirit or system." Neither is she a "cancer within a cancer group."
I believe that Stephanie has shared her loving heart, her kind and giving spirit, her deep desire to contribute to our BCO world in meaningful ways, her thoughtful and curious mind, and her authentic presence throughout many posts on this thread. Although I am saddened to consider that she may choose not to return to this topic, I respect her decision to do whatever is best for her at this point in her life.
In lovingkindness....
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I agree with you, Brenda. I did not realize that Stephanie was called "cancer within a cancer group". That is completely unfair and unacceptable. Such an anger toward or against Stephanie was ugly and cruel. Mercy upon the heart full of this kind of anger.
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Bon,
Please allow me to clarify: I do not save all your erased posts. Many of us here at BCO sign up for email notifications when a new post appears on a topic we are following. More than a couple of months ago, you wrote a very thoughtful post here on the D&D thread, it appeared in my email inbox, and I saved it so that it would remind me to reply to you as soon as I could. When I logged onto BCO in order to reply, I noticed that you had deleted your post, but I still wrote a reply to you, letting you know that I'd read your post and found it very meaningful. At that time I deleted the email notification that included your post, because I no longer needed it as a reminder to reply to you.
Over recent days I received email notifications of other posts you and others wrote on this thread. I deleted them from my email inbox as soon as I read them. Yesterday I received another email notification of a post that you had written, a post whose content was so distressing to me that I devoted time and energy to writing what I hoped would be considered a thoughtful response. At that time I decided to share a process by which people can examine whether their thoughts are causing them unnecessary stress and suffering. It's a process that I have used when I have struggled with certain thoughts about my own illness experiences and how they have shaped my life.That response was written 17 hours ago and can be found at the top of this page.
When I awakened today, one of my first thoughts was that I should act even more courageously by speaking to the issue of comments that had been made about Stephanie/Longtermsurvivor. I would not be able to live with myself if I did not respond to misguided comments made about anyone here--not just Stephanie. My reply of 4 hours ago speaks for itself.
I'm not questioning the function of the delete/edit options. However, I am concerned when a person makes highly inflammatory comments about another or a group of people or a particular topic, creates turmoil and contributes to an unsafe atmosphere, then deletes or edits those comments with the expectation that others will just accept what happened and not address the breach of safety and trust. I have brought it up so that we as a group can work through what has happened here. As group members we do have that right. I don't consider that process of working through particular issues together to be drama. I think it's a necessary, vital process for those of us who want to insure that this topic continues to offer a safe haven for those who wish to meaningfully, respectfully explore death and dying together.
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Well, I think a little distraction is needed here, so I'll step up.
Have you all heard of Eternitrees? They are biodegradable urns used to grow trees, using cremation ashes.
Since I absolutely do not want to be put in a box in a the ground, and I don't want anyone gawking at my dead body either, I chose cremation.
Quite by accident, I found out about Eternitrees. I have the ashes of my fur-babies, and we ordered urns. My fur-babies will all be dogwood trees, and we chose a flowering cherry for me. This will allow my husband and sons to have a place to visit me, but not a grave.
http://www.eternitrees.com/ for the interested.
Gentle hugs to all
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Hi ladies,
Having a rough time as of late and having many end of life thoughts that I didn't think I'd be having this soon.
I love the eco urns and plan on being cremated and my ashes, at least some of them, will be buried with my parents and siblings. Grave markers are very important in our family. We visit cemeteries often. I do plan on having some remains placed in an eco urn for my husband and daughter to do as they wish.
I saw this recently and it really touched my heart and wanted to share.
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I don't normally post nor have I felt well enough to update my profile but I felt the absolute need to beg Longtermsurvivor to stay with us. Your words, wisdom, support, attitude, advice, and philosophy has been so important and comforting to me. Many people here help (Rosevalley comes immediately to mind) and we obviously need all the help/support we can get. I understand your desire to leave this forum Stephanie. I might also if another person gets the same treatment you did. Should you choose to stay away I just wanted to thank you sincerely for your wisdom/sincerity. You are a good woman fighting our common battle. Hugs!
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Thank you Mominator for your thoughtful response. I can tell you've been on the receiving end of some of these not so helpful comments. I don't feel so alone in what I'm feeling anymore. I am sorry you also experienced the awkward comments, at especially fragile times in your life.
I am very suseptable to drama right now in my life. I'm building a cocoon around myself and my family and I don't let anyone rob me of my joy with their drama. Unfortunately this has cost me some family and friends, but it is necessary to eliminate stress in order to conserve my energy. P
The next time someone says "Don't you worry, Jesus will heal you"...I think I will say "Thank you, but I don't think He's going to use comments like that to heal me". And leave it at that.
Am I the only one who looks forward to what the next adventure might be, in whatever (if any) afterlife we may experience? I don't want to go anytime soon, and I am sad about leaving my family, but I do find the idea of the "next chapter" exciting. I just hope there's no laundry or paperwork in the next chapter.
Namaste!
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Jharris, I agree with you. I do, too, think we should beg Stephany to reconsider and come back. Not only that without her, the back bone dialogue on this thread among Brenda, Rosevalley, M360, Blondie, and Stephanie (used to include Skylotus who passed not long ago) about their experience in this stage of life in the dimensions of morality, spirituality, and aesthetics will loose a lot spirit and energy, but also that no one should be treated this badly and virtually be driven away, let alone a treasure well of MBC experience such as Stephanie . In any case, what happened to Stephanie will not go away without a trace. Pretending nothing happened would not help to heal the wounds inflicted on this thread. By topic, this thread is about death. Therefore, this thread should and must be particularly kind, loving, non-judgmental, merciful, generous, forgiving, comforting, and peaceful. Out of her respect of the spirit of tis thread (and this site) and peace of the public's mind, Stephanie decided not to be engaged in any arguments and obeyed Bonnie's demands to delete her posts concerning or involving Bonnie with little efforts to explain and defend herself, which was a very generous and a huge gesture of acceptance of the insults inflicted on her. Stephanie is seriously ill. She joined the boards only 5 months ago. But she has been so active and so eager to support anyone she could. As Jharris and Brenda pointed out, Stephanie IS a very IMPORTANT voice across the boards. Her kind heart, warm attitude toward people, and powerful mind are truly a bless to us. Just in order to be truly kind, we should let Stephanie know that we love her, appreciate her, respect her, admire her, and miss her by begging her to reconsider and come back especially to this thread (she said what motivated her to join was Rosevalley's suffering which pained her profoundly). So, my dear friend Stephanie, I am begging you to come back!!!
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In the spirit of supporting those in the end stages pf their cancer journey I wish to surround with lovingkindness and light Stephanie, Blondie, M360, Nancy, Hope, Brenda and all those on the cancer path. It is of no consequence who started the thread and no one "owns" it. It's for suffering support and community. Lets try to keep it that way.
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Akshelly, you have some company in your anticipation of the next chapter:
"After all, to the well-organized mind, death is but the next great adventure." -Albus Dumbledore
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May I firstly state that I never post on this thread (I respect the Stage IV Heading) - though some others do not.
This is my one exception (please do not tell me not to post here as I have no intention of posting again), but may I respectfully suggest that the 'conflict of opinion' that has recently arisen here be left to the two posters involved to resolve.
No one should take anyone's side as we love them both and they are both grown adults and can resolve this themselves! I have seen a similar conflict on another thread almost destroy it.
Please, please, please move on and leave it to Bon and Stephanie to resolve, it's no one else's business.....
As I have said, I won't post again ----please forgive me this one time.
GP
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A heartfelt "Welcome!" to akshelley, Noni, and Jharris, and a heartfelt "Glad to hear your voice again!" to Terri-c. Not that others have gone unnoticed--you haven't!--but I appreciate hearing perspectives of those who are new to us or who rarely post.
I'm more tired than usual--seems like eating and showering today have used up much of my energy--but I really want to share the following:
Trees have always fascinated me. When I was young, around 8 or 9, in the midst of a turbulent life, I would climb into the middle of a weeping willow tree, where I felt protected and sheltered but where I also learned to let my imagination grow. Perhaps that's when my fascination with trees began. I guess it's no small wonder that all these years later, I've become intrigued with the idea of using cremains to bring another tree into life. (See also www.thespiritree.com) There's something about trees being the "lungs of our planet," some of them having the ability to grow hundreds and hundreds of years, and their capacity for growing stronger in reaction to nature's stressors that makes that idea so appealing. Through this thread, I've discovered that there are many others who share my fascination, fondness and respect for trees. Imagine my joy when I discovered this link in my email inbox today:
So, of course, I immediately wanted to share that link with you all. I imagine there will be many who think of special trees they have observed in actual life or in photos—who can forget the California Redwoods and Bristlecone Pines or the Quaking Aspens?—but my heart still melts when I see a weeping willow.
Off for a nap, which I expect to begin with some guided imagery involving trees. Peace and lovingkindness to all....
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Bon enough. You hurt someone and drove an end stage hospice patient off the board when intent wasn't there. You can't justify your behavior. It's meaner and nastier then what was supposedly dished out. If you have had so many issues with providers that you have abandoned all medical care (by your assessment not mine since how would I know?)maybe the problem is you? All providers in all states are unworkable while you are stage 4? You think that because you revived a thread in 2012 you own it? Your territory alone? What's your point in bringing that up we "owe" you? I don't need this drama in my life either. Life is way too short.
I wish you all well.
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