A place to talk death and dying issues
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hugs to you rose. Thank you for always being honest and sincere. Sending much love to you
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Roseville, so sorry for your misery and disappointment! Do you think you could try to take a tsp. Of maple syrup at a time?
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So I've had N&V on brain rads and cannot look at zofran or compazine because it reminds me of my first chemo days! Ugh! So my MO is prescribing Marinol. I have no idea what it is or how it works. I have not even picked up my RX yet. Maybe someone can say something about it for Rosevalley?
xo letranger
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I liked compazine. Don't like phenegren. Sorry you missed your trip.
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I feel your pain Rosevalley. Sure, medicine has lengthened our lives, but WHAT a life! I lost my children to a sister-in-law several states away. I was homeschooling and just couldn't stay awake. My tumor marker was in the high 700's when I was diagnosed metastatic in 2010, initial dx in 2005. It gave me osteoporosis like a 100 year old lady. Most everything in the torso and hips broke. In bed for a year. Zeloda worked great so they took me off of it! Had me on Afinitor. Nasty stuff. Do not even try. Developed Pellagra and Trigeminal Neuralgia. I've read many of the post on this site and everyone adopts a Pollyanna attitude. I get enough of that from every other blindsided, frightened for themselves, fearmongering weaklings who cannot stand up and have a real conversation with me.
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Oh dear, sweet Rosevalley!
Here we are with our implanted drains, sucking off ascites and dealing with nausea, though mine is without vomiting. I'm feeling fortunate that I can still eat & drink, though tenderly, gingerly even. Ginger - seems like everything is ginger flavored these days - ice, cake, tea and tincture.
Since you too are draining ascites, remember that you're losing important fluid, electrolytes and protein. You are likely dehydrated and malnourished from that too. Take good care of precious you. And I'm praying for more help in human form to come your way!
Rosevalley, you are so right. We trade one misery for another.
And are so grateful for every kindness, comfort, bit of ease.
Rose, I know you're used to white-knuckling it for your daughters and just bearing up, no matter what. And I'm glad you knew well enough to stay home today.
While we both know we're headed toward death and leaving those we love, we both hope that our leaving is as easy on them as can be. It sounds like your youngest daughter has her finger on your pulse and is suffering her anticipatory loss of you. So hard. So rough. So tough for everyone.
If there were a time bank, I'd send of my quality of lifetime hours to you and your daughters...to all the mothers of children who so need their moms.
Since there isn't, I shed tears of sorrow and send messages of loving kindness and compassion for the suffering of all.
Holding you, holding us all, in loving, healing light, Stephanie
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rose. Wondering if you made the trip or not ??
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So sorry Rosie posie....hugs to you and much love.0 -
rose. Oops. Seen on your thread you didn't get to go. So sorry
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blondie. - where are you? How are you? Missing you
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when I was doing chemo, they said certain smells could help ease the nausea. They mentioned vanilla and peppermint. I found spearmint soothing. My friends thought I was strange. I wouldn't always chew the gum but just smell it. My fav was wrigleys freedent spearmint. It's very mild and no artificial taste. Doublemint gum is a combo of peppermint and spearmint. My three year old says its spicy. Hope you get to enjoy another bird show today!
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Thinking of you today...agreeing also that life is too hard and wishing that I could make it better somehow.
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blondie, Rosie. Good morning. Big hugs
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Well I only threw up 4 times today and managed to keep 2 boosts down.. yay. Still feel weak and miserable sleeping lots.
We try so hard to support our two deaf kids (who are adopted) through my cancer and their grief, but forces have conspired to wreck our efforts. After establishing a great therapist who was ASL fluent she decided to move to a better practice 45 minutes away, not a preferred provider. Then the other therapist my other daughter sees the only deaf female counselor in our town of 150,000 was just unlisted as preferred provider by United Behavior Health and we received a letter saying we can't use her after April. There are no other options. If we get a hearing person the interpreters range from great to woefully inadequate and add a weird dynamic of speaking through folks... plus the interpreters change and it's just bizarre..especially for kids. Grieving kids.. now we have no options, in our hour of need there is nothing... it's like what did I do to piss off the universe and cause so much heartache? Why can't anything go right? I feel so badly for my children because they need the support.
I hate insurance games. HATE IT! Wish we had a single payer system where we all chip in and it's open access. Not this "no all these people work for company X and you can only use company Y or Z.. phoooey it's all BS.
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Oh, Rose, so sorry .... As if you or your kids need any more obstacles in your life.
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ahhhhhhh, so sorry...I hate thinking the " world" just doesn't care about people anymore...but it seems we are moving more and more in that direction. It's just not right
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ABSOLUTELY!
I CLAIM MY RIGHT TO DISCUSS "MY DAY" WITH THE SAME DIGUSTED SARCASM AS ANY OTHER HEALTHY HUMAN BEING WHO COMES HOME AND COMPLAINS ABOUT COWORKERS, CUSTOMERS, CHILDREN AND BOSSES.
IF IT BOTHERS YOU THAT THIS WAS "MY DAY" AND THINK I SHOULD SMILE MY WAY THROUGH IT THEN STOP COMPLAINING ABOUT YOURS!!!
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Hi 2ATHENA2,
We haven't met yet...it looks from your join date and number of posts that you're new to Forum 8 for those with mets and this Death and Dying topic/thread.
While it's nice to read you reaching out to us, it's hard for me to read ALL CAPS because that means you're yelling. At me and others reading.
2ATHENA2, it sounds like you're having a hard time at home, needing a place to complain with disgusted sarcasm and not getting what you need at home. I'm not sure this is the place to be heard though.
Can you please tell us more about your concerns re. death and dying, since you've chosen to contribute to this topic/thread?
We will listen/read and respond how we're able.
I've found bco's Forum 8 to be a welcoming, comforting, engaging place as I've been dealing with mets for a very long time. And I treasure the kindness and authenticity of those in this topic/thread because I'm now on hospice with progressive disease.
ma111, the person who started this thread wrote:
This post is for those of us with concerns and issues about death and dying to talk about them.
IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.
2ATHENA2, I hope you can find the support and information you're seeking at bco.
healing thoughts, Stephanie
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Hugs to everyone out there. Our struggles are real... it's hard. Life is hard and even though we are stronger then we sometimes think we are, we are also fragile. Life is fragile handle with lovingkindness and care. Holding you all in as much love as i can have for peace, comfort and wellbeing (under the circumstances).
I have contacted some folks and hope to resolve something in the counseling issues but it will take some time. Pray for a workable option for my kid's sake. lots of love to all
rosevalley
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Prayer your way Rosie...and fingers crossed too0 -
2ATHENA2
I think you should try the steam room, anger thread, it would seem to be more sutied for you. And i would advise to post in normal writing and not caps. Here it is a place for people who are free to talk about their desth, their fear and they habe that right. They do not need someone to come and make a mockery out of their feelings. While we feel for you and we are sorry you feel this. It would be good for you to be somewhere else and not disrespect the feeling of these lovely ladies.
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Maybe her post wasn't meant to be screaming... or hurtful or mocking and perhaps it was just over reacting. I like to give everyone thebenefit of the doubt. If I am sarcastic or angry I usually tell it upfront and open. I can't read that post and feel like we might be wrong. Kind of like some one's Mom using using WTF in a text and thinking it means something silly and nonthreatening, then feeling horrified to find out what the "F" stands for once their kid points it out!
I love the little sloth... my DD2's favorite animal. They always look like they are smiling and happy. Sweet creatures.
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you are so sweet Rosie. Love reading your posts
. Makes me want to be a better person..thanks!!0 -
Rose I am originally from Portland and there is a grief center called The Doughey Center. If you call them maybe they can help you get in touch with resources in your area (Corvallis), or maybe they'd have some suggestions. This sucks and I'm so sorry your babies have to go through this. ((((Hugs))))
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Rose, I hope you reach some resolution on the therapist issue with your kids. Not that you have time with everything you are dealing with right now but maybe another family member can call United and speak to them. I had a cancer-related therapist rejected previously for being out of network but when I explained there were no other options, they permitted it at the in-network rates. Since there are no other ASL fluent therapists in the area, that might work for the out of network therapist who is in your town. Good luck sorting this out.
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JFL- that is exactly what we are hoping to try. Since there are no other options in town we will request in network rate so fingers crossed. It's such a dance these insurance hoops...
Home infusion nurse comes today... new port access and I'll give myself fluids. She is very nice. Got to get ready.
I have to admit something silly I did yesterday. I keep water next to my bed so when my mouth get dry (all through the night) I can sip and swish and don't feel like choking. Just sips, since reflux is such an issue. Well I must have picked up the glass full of water and fallen asleep holding it when it tipped and poured all down my face neck, pillows, shirt..quilt! Man that will wake you up with a start! Cold water down your neck and face and torso!!! I was drenched..and felt so stupid! Up at 4:59 to dry off change the bed... when the nurse comes today she gonna look at the dressing and think what happened? I took a bed bath...ha ha gotta laugh at dumb things we do right!
lovingkindness to all. rosevalley
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(((Rosevalley)))
I love you and while I appreciate your "light" story, I understand the gravity of your life now. How difficult not to eat for so many weeks, to suffer nausea, vomiting, pain and hours in the ER and fighting for your right to proper medical care.
I just wish I could send my hospice team to care for you. They are so extraordinary - every one goes out of their way to help me live my fullest, best life possible. Things are better for me on hospice than they were before I began it. And I'm still sick enough to "pass" my 90-day review, so I'm not getting kicked off.
Yes, I have the dry mouth too (xerostomia). It's common in we who are dehydrated and draining ascites.
Thinking of you every day and so grateful you taught me to drain every day, dear Rosevalley.
warmest of hugs, Stephanie
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Stephanie shared with me that Stephen Levine died a week or so ago, and indeed, he died on January 17th at the age of 78. I mention Stephen Levine because his book A Year to Live was my first introduction into the process of exploring the "world of dying and death." In my 30's I was diagnosed with breast cancer the first time around, and that diagnosis and the subsequent months of treatment unsettled me, and deeply so. I do not recall how I learned of Levine's work, but I approached A Year to Live with trepidation as well as motivation to see if tackling my fears might actually help to alleviate them. That book and my explorations of so many issues that the book brought to my attention helped me to learn how to live more softly and with less judgment toward myself, including the harsh judgment of myself for even having a fear of dying, and to learn how to be more compassionate toward myself. At that point in my life, I was a fairly compassionate person, when it involved both human and nonhuman animals, but it had never occurred to me that I deserved to be compassionate toward myself. So, I had to explore whether I could truly and authentically be compassionate toward others if I were not so toward myself. One of the ways in which I learned how to be more compassionate toward myself was (and still is) through the lovingkindness meditation. It took a while. I remember the shock, the actual physical/psychic jolt, of hearing a quote attributed to the Buddha: "It is possible to travel the whole world in search of one who is more worthy of compassion than oneself. No such person can be found." That quote opened my lovingkindness meditation even more. And over time I have learned to give myself the gift of lovingkindness while giving it to others as well.
Today I am grateful for having expanded my experience of lovingkindness and living/dying by reading Stephen Levine's work. I am grateful that Stephen Levine lived and that he and his wife Ondrea expanded our understanding of dying/death.
May we all know the experience of being compassionate toward ourselves and toward each other.
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beautifully said
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Brendatrue,
Beautifully stated. I started reading the teachings of Buddha diligently, about 3 years ago. I was diagnosed with MBC a year ago. I look for opportunities to practice loving kindness everyday. I am now ready to read the book by Stephen Levine. Thank you for the suggestion. May he rest in peace.
Melanie
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