A place to talk death and dying issues
Comments
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Rosie posted around the 16 th on this thread
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Rose, Blondie, M360, LongtermSurvivor,
Thinking of you, sending you hugs, and hoping you have a good day.
Pam
(P.S. Lovely poem!)
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During the midst of a tough trip, times in which I spent resting, I read some meaningful posts here. Thanks so much to all who continue to share their voices and perspectives. I know that I say that off and on, but I really do mean it. So...I will probably keep on saying it.
M360, You continue to be held in my meditations. You are so kind to have shared at such length about your experiences with illnesses other than cancer. How much unnecessary suffering we endure because of ignorance, lack of empathy, inadequate treatment! Suffering from disease itself already exacts a steep enough toll. However, if you are like me, you have tried very hard not to let illness define you and to find acceptance while still working toward whatever symptom management is possible and good enough quality of life. I hope you found your meetings with your MO and palliative care MDs to be productive.
Stephanie/LTS, Thanks for sharing more about your experiences as well. I especially appreciated your statement about finding relief and value in reading about cancer related opinions, options and statistics rather than "depressing case histories" of rare illness. Can I relate to that! I also appreciate your posting the write-up about the Journal of Palliative Medicine article on end of life experiences, dreams and visions. I've had that article bookmarked in my "death file" for a while, in part because I like to remind others that end of life dreams and visions are normal. (I've had family members who thought differently and the consequences were distressing.) I particularly like: "Although the phenomena bring a sense of impending death, they also evoke acceptance and inner peace. These are crucial distinctions, since if a dying patient with ELDVs is considered delirious and is treated as such, the medication may interfere with the comforting experience that ELDVs can bring to the dying process. Not being able to derive that comfort at the very end of life could lead to isolation and unnecessary suffering for the dying patient...."
Blondie, it may be helpful to remember that we will continue to change as we near the end of our lives and that we may find dreams and visions to be comforting rather than distressing. Right now we may view those dreams and visions as a sign that we are "at the end" and feel frightened to anticipate them, but by the time we have those dreams or visions (although not all do), we will likely find them to be a more positive, peaceful part of our end of life experience. Just a thought....
Also, Stephanie, you have shared a link to one of my most favorite articles about end of life, "Wild Darkness" (Orion Magazine)! When I first read it, I posted it on this thread immediately. (How interesting that you shared it as well! I did not know that Eva Saulitis had died, and I thank you for sharing words from her blog.) One of the many aspects of that article that I appreciate is the mention of Jane Kenyon's poem, Otherwise. Years ago, I was fortunate to hear her husband and former Poet Laureate Donald Hall read this poem after her death. He also wrote a tender, raw, deeply felt book of poetry about his experience with bereavement and grief after her death. It is not an easy read, but then bereavement and grief are not typically easy processes.
Letranger, what tender hearts so many of us have! I know it is not necessarily an either/or situation, but I am so glad that my heart is not hardened and that I still feel the pain of loss and grief. I would hate to think I might develop into the kind of person who does not feel deeply the loss of those for whom I care and with whom I share a deep connection. Your post about grief made me think about how I no longer expect myself to "resolve" grief, rather I expect myself to learn how to carry it with as much compassion for myself as possible. What I have found that helps me deal with grief? I may remember that someone I lost was particularly kind, and I will share kindness with another person. I will remember that someone was funny, and I will use humor to help myself or someone else cope. I will remember that someone was courageous, and I will act with courage, whether facing some task on my own or by speaking out against an injustice. In essence, I honor that person's legacy by weaving their "finer" qualities into my relationship with myself and others on this planet.
Rose, your descriptions of your relationships with your daughters are so touching and, yes, uplifting. I know we've talked before about our attachments to our loved ones and how we hate to leave behind those who are precious to us. Leave behind our tired, worn out, ravaged bodies--yes. I hope that process will be one of relief. I just can't imagine myself feeling relief over leaving behind my most precious loved ones, but I hope the legacy of love and all those values that I hold dear will shine brightly within their hearts and minds for a long, long time. Perhaps it will shine brightly in my heart as well when I leave this world?
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Here's something for you to read. I go to sleep and dream now. Hope to respond in kind and kindness tomorrow. ~ Stephanie
xxx
excerpt from Wild Darkness by Eva Saulitis
https://orionmagazine.org/article/wild-darkness/
A summer of tests and procedures and doctor appointments kept me off the boat until now. A surgery and six-day hospitalization in early August to prevent fluid from building up in my pleural space taught me that certain experiences cut us off entirely from nature — or seem to; I know that as long as we inhabit bodies of flesh, blood, and bone, we are wholly inside nature. But under medical duress, we forget this. Flesh, blood, and bone not withstanding, a body hooked by way of tubes to suction devices, by way of an IV to a synthetic morphine pump, forgets its organic, animal self. In the hospital, I learned to fear something more than death: existence dependent upon technology, machines, sterile procedures, hoses, pumps, chemicals easing one kind of pain only to feed a psychic other. Existence apart from dirt, mud, muck, wind gust, crow caw, fishy orca breath, bog musk, deer track, rain squall, bear scat. The whole ordeal was a necessary palliation, a stint of suffering to grant me long-term physical freedom. And yet it smacked of the way people too often spend their last days alive, and it really scared me.
Ultimately, what I faced those hospital nights, what I face every day, is death impending — the other side, the passing over into, the big unknown — what writer Harold Brodkey called his "wild darkness," what poet Christian Wiman calls his "bright abyss." Death may be the wildest thing of all, the least tamed or known phenomenon our consciousness has to reckon with. I don't understand how to meet it, not yet — maybe never. Perhaps (I tell myself), though we deny and abhor and battle death in our society, though we hide it away, it is something so natural, so innate, that when the time comes, our bodies — our whole selves — know exactly how it's done. All I know right now is that something has stepped toward me, some invisible presence in the woods, one I've always sensed and feared and backed away from, called out to in a tentative voice (hello?), trying to scare it off, but which I now must approach. I stumble toward it in dusky conifer light: my own predatory, furred, toothed, clawed angel.0 -
LTS/Stephanie- thank you for posting that article. Wild Darkness sums up exactly how I feel. We have many rivers and streams like she described... writhing with bodies leaving after spawning. The sight of it is magical and disturbing but just the cycle of life. The Pacific Northwest is such a mystical place... I understand why the Indians were in awe and held it in such reverence. I know where the eagles nest and cram my head to see... I watch the clouds and sunsets.. the families of crows living their social lives. It's quite wonderful. To be buried under a fir tree one with the forest seems like a perfect ending.
This endless nausea is just the pits... zofran, reglan.. draining... puking.. hours of nausea. It's a drag. I go to bed nauseous and wake up nauseous. Trying to be grateful for my time here but the misery factor is pretty high. Here's hoping folks are comfortable and with their loved ones. I send you all much love and peace. rosevalley
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xavo- wow a lovely nature preserve you get to live in! Wonderful. thank you for sharing. Thanks to all who share here. Blondie hugs.
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I've been following this thread and I hope you don't mind me asking, but has anyone heard from Hortense? It's been since December (early) since she last posted. I know she's been in hospice but I think about her all the time and would love to know if anyone is in touch.
Amy
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I am never going to catch up on responses here.
Brenda, you set the bar high for keeping and catching up with frequent posters at this topic. Let's leave the top for you and I'll float on through. I too seek to embody and extend the beautiful aspects of those who've died - from courage to humor to wonder and awe.
Rose, I too resonate with nature's cycles and life-death-life being a reassuring image to hold. That said, we're human too and form attachments to our lives and our loved ones. I think the latter are the hardest to leave. I've read ALOT of books on dying and death, many by spiritual leaders and men. Most say that humans are afraid of death because of how we imagine dying or the afterlife. But I keep thinking of mothers and other caregivers who really don't want to leave those who depend on them/us for love and care.
Any who've felt loss, abandonment, neglect, exile wouldn't ever wish that on another...and to be the cause of that grief for a loved one is just heart rending in the rawest, tearing way ever. I used to hear women saying they'd choose aggressive, even futile treatment to stay alive to witness milestones in the lives of loved ones. It may be more accurate to say, they need us as much as we need them.
Rose, weren't you scheduled for chemotherapy last week? If so, how did it go?
And the nausea and other symptoms you continue to experience? Are you able to keep down fluids? Boost?
My own nausea is so much better since I followed your advice and am draining a liter of ascites every other day instead of two liters every other day. You really receive daily blessings and gratitude from me, dear Rose!
Blondie, M360, Rose, Brenda and other edge dwellers - y'all are in my loving, healing meditations.
Here's a song from a Threshold Choir member:
Let Love by Agnieszka H Wolska
Threshold Choirs are small groups of women who sing at the bedsides of the dying and ill (that would be us!). There are chapters around the world. You can check the map to see if there's one in your region.
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Stephanie/LTS, I assure you I am not always thorough in responding to everyone or to every topic raised! I was just in a particular mood when I wrote that last post, and with the help of nitro got it done. I won't worry about bars being set, and I hope you and no one else will either. We just do the best we can....
I've read about doulas who sit with those who are dying, and that is certainly a comforting thought. Last time I checked, the doula programs were few and far between. Here's a link to a NY Times story about "death doulas": http://www.nytimes.com/2015/01/24/your-money/death-doulas-help-the-terminally-ill-and-their-families-cope.html?_r=0 I know that more and more hospice programs offer "vigil volunteers" who sit with those who might otherwise be alone at the time of death or even with a dying person and her/his family.
I want to repost a link to a video that I posted a while back, because I just watched it again yesterday and found it meaningful, and I thought some of our newer readers/posters might find it interesting, too. https://www.youtube.com/watch?v=S2eUw0CUuMc It's called "When I Die: Lessons from the Death Zone" and described this way: "In 'When I Die' Philip Gould shares his thoughts and insights as he confronts his impending death from oesophageal cancer. How do we approach death whilst embracing life? How can we change the conversation around death and palliative care for the terminally ill?"
AmyQ, I know many of us think of Hortense and wonder about her status. We may never know.
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Whew!
Brenda, I'm still finding my way around bco and so admire your ability to explore this topic, address individuals and include everyone reading too. Thank you!
Glad I needn't be proficient from the get-go.
Death midwifery is a growing movement in Britain, Canada, Australia and the USA. Will share more resources later...in a time crunch now.
All participants in this topic included in my loving, healing meditations this morning.
Many blessings, Stephanie
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Letranger and Rosevalley, seriously, it's my backyard which is evaluated by town for property inspection purpose as "ordinary". It is indeed just very ordinary in here, the west Mass which is still quite rural. Our yard is about 200 feet back from the street . The street is actually a section of a local road. The road has existed for 200 years. Emily Dickenson used to ride on horse cart on this road to attend a school for girls (now the Mount Holyoke College). Our yard borders a private conservation land, on a hill. It is not well tended so it looks quite "natural".
A lot of animal activities. A bunch of turkeys wandering through twice a day everyday, going to the brook north down the hill a mile away to have their morning tea and hang on there till the afternoon. They pick their meals along the way. The turkeys sleep on the tall pine trees in our yard. I can watch them taking off from the ground to reach the branches of the tall pines at dusk. They fly straight up, like helicopters. So probably they just hop. With their wings' aid, they can hop up as high as 50 feet. Too many all sorts of birds. Our decks and windows suffer from their droppings. We air dry our laundries. The turkeys drop their stuff from above and stain our clothes on the lines. Well, enough about life. Here, especially for you, Blondie. Hope you have a good day today!
Last spring (2015), a robin couple occupied the bird hotel. These are their babies. Whenever they heard a sound, they would extend their necks and open their huge mouths as widely as possible. 
If after opening their mouths widely for a while and no food coming in, they would go back to sleep. No complants.
One of the robin babies' parents. I can't tell it's the Mom or the Dad. They both feed their babies, very diligently. If they came back at the same time with food in their mouths, one would patiently wait aside till the other finished feeding. The babies fought each other for food relentlessly! The parents magically noticed it and would take care of the smaller and weaker ones. (Sadly, the babies all died during a stormy night before they had their wings ready for fly. I do not understand why and how. The robin Mom just sit on them to protect them from the rain. The robin Dad slept on some other branch nearby. It took a little while for the parents to realize that their children were all dead. They stood on the edge of the nest watching for a while, then flew away. Then flew back, standing on the edge of the nest watching the bodies of their babies. A few days later, the babies' bodies were all gone. The parents were also gone. The empty nest was totally clean. I saw many ants carrying baby robin's feathers collectively the day the nest got empty. Nature is never messy with deaths.)Brenda and Stephanie, your dialogue on social arrangement of care of end of life is indeed fascinating!
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Love these pictures. I find my self looking at the world and finding beauty in the moon suspended in the sky. The sunlight reflecting off the leaves. They patterns of the clouds. I'm in a very urban area, so not so much wildlife
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Rossileo- even in a highly urban area there is wild life. My DD goes to Portland State and is right in the urban core, cement and high rises. She can see squirrels, raccoons lounging in the sun on the carport roofs, birds. She saved a huge hawk who tried to swallow an entire pigeon and got it stuck in it's throat. She helped a construction worker load it it into a box and take it to a vet... they got the pigeon unstuck.. This was while working as a barista! We have seen coyotes roaming the streets... of course Portland is ringed by many large open areas with fir and woods and steep hillsides. I love the robin pictures. Yes nature does have a way of cleaning the environment.
I was supposed to get IV hydration to ease the nausea. It was ordered the 12th. Home health "lost/ never got the order." Either they lie or my oncologist lies... since my oncologists first order went through perfectly (for pleurx drainage and training) and I am already in the home health system I am inclined to believe the screw up is home health not checking their faxes. Despite multiple calls the earliest they can show up is Friday. Two weeks after the order went in. thanks for nothing; I have been puking 50% of everything for days (some of this is doxil). I feel weak and rubbery and have no energy to do anything. If I needed dressing changes or iv antibiotics those I would get fast... this to relieve misery I wait. Palliative care is a big joke.
I am beginning to think the ER is the only dependable thing about my health insurance, they never turn you away and even though the wait is usually long and miserable you get relief the same day. NO other provider can do that for me. Yes it costs 1000 to show up and yes my copay is 100.00 but ya know what? You get relief from the puking and dehydration and I can't say that about any other doctor I have. Nothing is reliable they talk a good line and don't deliver... the ER delivers. No wonder 20% of non insured people use the ER for medical care. I may never go to hospice since the total unreliablity of my health insurance has taught me you can't depend on your health insurance to come through in a timely manner... the ER comes through. I will not give up access to the ER. My health insurance is hell bent on seeing me suffer even when there are orders to allieviate suffering. I hate my "compassionate healthcare in the name of Jesus." (I do not wish to offend any followers of Jesus... it's just that my Catholic Healthcare clearly learned zip from his mercy and compassion.) They get a "D" for dismal, disgraceful, depressing... ok rant over now to take my 3rd dose of zofran. I carry a plastic pitcher with me from room to room since i never know when I will need it.. life in cancerland. gotta love it.
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For you, rose, by my friend patti smith
And I'll rise Every little morn'
To tend to thee When you rise
Open up your eyes You will see
There I'll be Waiting by the door
Come to me Take my hand
Look into your heart There I'll be
Now's the time To turn the view
Now that I have you
Now's the time To turn the view
Now that I have you
Roses growing by my door Climbing up the vine
All the thorns and pain obscured Roses shall divine
Where we feel no pain And the love inside
Where roses climb Roses shall divine
Roses shall divine Holy mother
Mother of gold Mother with stories
Told and retold She felt our tears
Heard our sighs And turned to gold
Before our eyes She rose into the light
She rose into the light She rose into the light0 -
Rose I had hoped it had gotten better. Sorry about the pitcher but it's better than a pink bucket:) I wouldn't give up ER either. Just know you have many in your corner.
Cool story about the pigeon and hawk. Love the pic and nature stories.
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always reading. Sending love to those who are in pain and suffering. I'm so sorry. I wish there was something I could do...just many prayers for you Rose.
I also wonder about hortense. Hoping she is pain free and at peace
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Rosie, this is how your story made me feel. I wish everyone knew how to do their jobs. Don't know what has happened to this world. Hugs your way .0 -
Well after not being able to keep ANYTHING down and puking a good 10-15 times between home and the ER... I went to the ER. This time to a small hospital nearby... to far to drive to the regular one. Itwas cold dark and rainy last night. They were great and got my port right a way... I was worried. FLuids went down and my poor kidneys are so stressed...low sodium, mag high, K 5.33, lipase high 350.., BUN off, dehydration does a number on your kidneys. After a liter of LR and IV nausea meds I felt better and we headed home at 11pm. I took more zofran but woke up at 4:50 and threw up mucous. Then back to sleep. The phenegran they gave me makes me very jittery and I could hardly stop moving. Such a weird sensation, even with benedryl.
But I feel batter this morning! Not so wiped out and no puking! YAY! My poor DH so tired... worked all day and up until 11 with me at the ER. Sainthood.. Today will be a better day than yesterday. I am grateful for that! I will try and go out and get one of those nausea wrist bands that Bestbird mentioned in a kind PM. It seems worth a trial run. I might go to a pot shop and see if I can buy the tincture to put on my tongue. I don't like the smell of pot so I am not doing that. I am desperate and since it is legal here. Why not try it. I have lost 60 pounds since last summer. (It's the first time I was happy to be over weight and the reserves have saved me.) Thanks for the kind words and lovely pictures (that bird above is hilarious). You are a bright light in my dreary hours. :-) Thank you.
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Dear Rose, it's a relief to hear you're feeling a bit better today, but as they say, "Oh what a night!"
I'm wondering whether the ER is doing anything for you that is "portable" for you and/or your palliative care team to do at home so that you will not need to continue visiting the ER quite as much. Perhaps if they'll provide a list of what they did, you might share it with your doctor/pc team and see what can be adapted. Fingers crossed!
Good to hear you are getting the Seabands! Also while you're there, perhaps you might pick up some mint flavored gum and some Queasy Pops. All are reasonable and hopefully the multifaceted approach will help to ease your nausea!
About the fluids: sometimes water just isn't hydrating enough. And you'll need some electrolytes. Perhaps you might combine a purchased alkaline water (which is a bit more hydrating and somehow tastes "smoother") along with an electrolyte-providing beverage. And if sipping is too challenging, you can freeze it in small ice cube trays and either suck on them or have them ground into a Slush. If you're well-hydrated and less nauseous, the sun will begin to shine a bit more brightly!
I hope you have a smooth day and that tomorrow will be even better!
With gentle hugs.
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....Also, some people swear by Pedialyte, for babies, for really excellent hydration!
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Xavo, Forgot to mention that I appreciate your sharing of nature photography and narrative.
Susan3, Your photo gave me a nice laugh at a time I really needed to laugh. Thanks!
Keeping you all in my thoughts.
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Rosie utold me 3 weeks ag7o uwould b. Gonevin 2 vweeks..hahaha hshshahs
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Blondie my kids made me do it! I would have kicked the bucket years ago... if it wasn't for my kids. They give me their best puppy dog eyes full of sorrow and I wilt. I will make myself miserable, take chemo keep trying and drink boost for my kids. I am trying to feel good enough to finish some scrap book photo books for them. Lately i feel too weak and tired to accomplish much. I need to drink more that 800 calories.. but it is so hard since I am never hungry and feel uncomfortably full after 8 oz of fluid.
Got IV fluids delivered to the house my port accessed and fluids I can give myself 3 times a week. Heaven. How do we spell relief 0.9% Normal saline. No more trips to the ER.. pricey but worth it. I just want to be comfortable as I can. I can't find the Seaband.. Big Five didn't have it. They said REI might but it's a trip. DH will have to hunt it down. Took 2 doses zofran and have sooo much gas... ugh.
It was sunny today... sunny and warm. My old narly 15 year old cat laid on my stomach and purred... bathed in the sunshine. He follows me around like it's his job to watch and protect me. We were bedfellows while the fluids went in. It's been raining for like forever and the sunshine was just heaven sent. Fluids and sunshine what a gift. For all the poor folks in the Midwest and East Coast.... stay warm and under blankets... summer will come eventually.
Lovingkindness to all. Stephanie and M360 I hope you are all comfortable and with loved ones and friends.
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Yes our kids make us do it. Good luck with the scrapbooks. I still haven't started mine.
I find this very helpful. Can you just take sips every hour and not all at once? I couldn't do 8 oz of boost at a time.
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rose. Hello. I didn't know you had been posting. Yea. !!! So glad things are better. Amazing what we will do for our kids. I missed you and your open posts. Huge hugs
Blondie. - hey friend. Hope you are staying in and staying warm. Love ya
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Rose, forgive me for intruding here, but I wanted to let you know that you can order a Seaband on Amazon.com.
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Just want to wish everyone here a restful, comfortable, and peaceful weekend!
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so funny, rose, I'm trying to finish a scrapbook for my 4 year old granddaughter. All I'm doing is her first year and just can't get it done. No motivation whatsoever. Now I have a new granddaughter. What are the chances of getting that one done? I used to be so into scrapbooking. Have done them for all my adult kids. Think I got burned out somewhere along the way! Have done baby quilts for all of them, too, and definitely will get one done for my new Delilah. They have to have their blankies from grandma. Rose, you just kee listening to your kids. They've got some mighty strong love for you!!
Hi, Blondie, dear friend!
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My DH found a seaband at Walgreens. I can wear the right one but the left one is tight. I have lymphadema in that arm and the wrist is puffy. I think it might be working. I am taking zofran around the clock and still tossed everything I drank today but one clear boost. It just seems impossible to be able to drink enough calories to sustain myself. Good thing I started this journey fat. I don't think doxil is working.
Anyway, to all of you a peaceful night, sweet dreams and lovingkindness your way.
much love rosevalley
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Another new day and non stop NV. Nothing stays down. I was supposed to go see my college DD2 and I can't stand the idea of being in a moving car... seabands and zofran.. nothing works. I drool and puke.. just sitting here. I am contemplating phenergan except I have a nasty reaction to it where it makes me twitch and jump and move nonstop like I am crawling out of my skin. The nausea stops but the creepy crawly jitters lasts for hours.. can't bring myself to do it since it's just trading one misery for another. This so sucks... got 1 liter Friday... guess I can hook myself up for more. clearly it's the only fluid I will get today. Life is so hard. I would love to sip a warm cup of tea...just sweet regular tea or a cold glass of water. nope. I am so sad as I wanted to see my DD2.
Be well fellow travelers on the last leg of the cancerland journey. ((((hugs))))
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