A place to talk death and dying issues
Comments
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Too funny Longterm!! hehehehehehehe
My comment should have read anti-inflammatory and I think I meant Tramadol! I take Tramadol and Tylenol 4's right now, but have Dilaudid and Fentanyl in my arsenal if needed. Surprisingly the Fentanyl doesn't seem to touch the pain anymore. If I have to go back on it I'm going to have to increase the dosage. Each patch should last 3 days and I'm not getting relief in any of those days now. I don't have time for it to build up in my system darn it!
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Stephanie that's pretty funny!! It's raining here and it always gets me down.. grey skies. The plants need the drink so I try and remember that.
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Oh good, I'll cross the toredol off my list and keep up with the tramadol. It does work for me by taking it in small steady doses.
Barbe, are you working with a palliative care team/doctor for pain control or your oncologist? Just curious as I've had much better symptom control with the former than the latter.
Sending a warm hug, Stephanie
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I was sent to a Pain Clinic at a large hospital in Toronto. You had to be on morphine for at least 2 years before they would work with you. They're the ones that got me on Fentanyl which worked wonderfully to break the pain cycle I was experiencing at the time. I have bone growth up the spine and when it moves around the sides of my spine and cuts off nerves I am out of my mind with pain. This seems to happen about every 3-4 years as the bone grows up my spine. I also have spinal stenosis, arthritis (in every single joint in my body as per my last bone scan), degenerative bone disease, bulging disks and Fibromyalgia. I am SO used to pain I'm surprised when I'm not in pain!
It was the pain clinic that said to take pain meds BEFORE you are in pain as it's harder to bring the pain level down than it is to keep it down. They are not concerned with addiction at all. Do you want to be a pain-free functioning adult or a pain-full non-functioning adult? A no-brainer for me. Again, I don't get stoned on the pain meds. There is an adjustment period when you first start a new med as your body does have to get used to it, but then you should be able to function (a day or two). If you are loopy then it's too strong OR the wrong kind of pain med. There are so many and it takes a while to find the right cocktail that eases your pain.
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Even though I rarely visit this thread, I always think of you, my sisters, and am happy when I see your visits on other threads. I tried to keep up with this topic earlier, but it became too difficult to process the end stages of life, while I am able to live a very normal life...with the regular nagging thoughts and worries of "what ifs." I found myself wallowing in what it will be like at the end stage...and that's when I needed to take a break. There is such amazing insight, support, love and compassion on this thread...as you say Rose, it's raw, but honest. Thank you for what you share...you are loved, thought of, and prayed for (that makes me feel good!), even when I'm not posting here. XOXO
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Excuse the intrusion, but I know many of you have been thinking of Nancy.
https://community.breastcancer.org/forum/8/topics/...
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Caryn thank you for posting that. I will miss Nancy and feel badly about her leaving her beloved Jake and dogs. Glad her suffering is over and she rests in peace. May her family be comforted by her love and memories.
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I have been waiting for my young Ricki magnolia to bloom. Finally it happened, although just two flowers for this year. For all who are here reflecting their profound experiences -
Good night. Comfort and peace.
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So lovely to hear from everyone who wrote and also to reflect on who reads, but doesn't write. Thank you!
Ronnie Kay, thank you for your prayers, they do help. And I totally agree - there's some point when your mind gets ahead of your body's lived experience and runs away into "what-if" land. You gotta haul your mind back to the present and stay with what's true now, knowing you don't have a crystal ball for the future. I'm so happy that you're doing well.
Xavo, I love magnolias and am so happy you have flowers at home and to share via photo. Thank you, your garden is so peaceful.
Caryn, thanks for bringing news of Nancy's death here and for creating a special thread for Jake to read - he sent a lovely note today.
Nancy, Hope and others are in my healing prayers as they enter hospice. Something about living at the threshold draws us to other edge-dwellers. A kinship as deep and real as the breast cancer bonds we all feel.
LA Lady, when I first came to bco, it was specifically for this topic (and Rosevalley). Hortense's name appeared over and over in the list of well wishing (along with Blondie, Bon, Brenda, M360, Rosevalley and Skylotus). Finally I just searched for all her posts and found a marvelous person!
When others asked the group about Hortense, Rosevalley wrote that "Hortense was very sick and stopped posting months ago. She was a tremendous presence to Terri Capriness and I felt terrible she had pancreatic cancer on top of the breast cancer. She just stopped posting. I would assume she passed on, but I have no way of checking. I loved her photos and observations of wildlife on her property.. so full of nature, kindness and wonder. She is missed."
https://community.breastcancer.org/forum/8/topics/...
Blondie, I saw your two short messages and though you didn't share what's up or where you are, I felt so happy that you're including us still. Thank you.
Brenda, am sending love and healing light for you this morning.
Shelley, Rosevalley, Barbe and all others too!
Okay, heading back to the scary topic because it just stopped abruptly and I'm wondering if it got too scary to continue. I hope some of those participants come here too.
Everyone, whether you write or read or both, I've widened my healing meditation to include you too!
much loving kindness for all, Stephanie
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Oh, I forgot to mention that I continue to be well, even while dying.
Symptoms continue and I'm rolling with the flow. Seems I need more morphine now and more sleep too. So, I drift. Can't really focus to watch movies or listen to podcasts/recorded books. But I can read meditative, reflective books for spiritual nourishment and supplement with The Sun Magazine and cookbooks for entertainment. It's easy to start and stop and not lose my place or the author's train of thought.
It's interesting to be so well while so ill.
I guess there is such a thing as holistic dying, as well as holistic healing.
Someone was concerned about my drop foot. It only lasted a short while. I continue to experience light-headedness, but think it's due to low blood pressure and nausea.
I'm so grateful to be doing so well. And so ready to take a nap now. At 7:30 AM. It's never to early to nap!
Here's a cartoon from the Australian artist Leunig. Hope you can see the fine details.
Wishing everyone a lovely and love-filled day.
much more loving kindness, Stephanie
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Stephanie, it is very soothing to see you writing frequently and almost daily here. Have not found your posts here for a couple of days. May be you posted somewhere else that I missed? Hope you have been doing alright. Hope you are comfortable today .
I also very much and especially hope Blondie, Brenda, and M360 are comfortable today.
Best to all.
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Caged Birds (Taigu Ryokan)
Time and again,
You, too,
Must long for
Your old nest
Deep in the mountain.
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Xavo- in the area Acknowledging our Community is a thread for Light from around the world for Longtermsurvivor Stephanie. She will frequently post there too. She was on yesterday. I worry when I don't see her post too.
Stephanie- we are thinking of you and wish you painfree days and comfort. (((Hugs))) I started Ibrance tonight and remain hopeful to spend more time with my 15 year old, family and fur kids. Fingers crossed. We have a bumper crop of foxglove this year and the Hummingbirds love it. I do too.
Hugs and lovingkindness to Blondie, Hope, Brenda and M360.
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Peaceful evenin' or mornin' to all,
You all continue to be held in my daily meditation, whether that of lovingkindness, intentional, or other. I have had some unsettling times, dealing with increased cardiac issues, challenges in assisting my almost 80 year old mother (for whom I have been primary caregiver for quite some time) with relocation to be near my sister, recurrent family conflict, the overload of mundane life stressors that must be managed, etc.
I contemplate more than I am able to write, and I am grateful when you all mention concern for me. I also continue to struggle with exploration of issues around integrity, being authentically present, preserving some measure of privacy, promoting safety while also taking risks toward openness and meaningful connection, and lack of clarity regarding my intentions and hopes with regard to connecting with others online, through BCO especially. My concerns over the challenges we faced on this thread a while back continue to reverberate through my life. For example, I have found that I had unrealistic expectations of myself regarding my involvement here and that others did as well. I have wondered whether the mental representations I develop regarding others here at BCO are even close to who they are. And I have questioned whether what I have found and wondered is even relevant. But I continue to explore and to give myself permission to do so at my own pace.
Please feel free to ignore any of my comments that don't have any meaning or relevance to you. As always, in lovingkindness....
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Brendatrue- you have so much on your plate between your own health, taking care of your Mom, family issues etc. I can relate sometimes I start explaining my anxiety and concerns around family and then edit my post because I have shared too much. There is a fine line between privacy and exposure. It's hard to know where to draw the line. If you just say you are concerned it doesn't paint a clear picture of why. But it preserves privacy without adding details. I flip flop between wanting to be raw and honest and find that my desire to protect privacy edits what I want to say. I guess that means we are less than totally honest but as honest and authentic as you can be on a web site.
I can be more honest when it's just me as the subject. For instance in Dec -Feb my quality of life was poor and there was real suffering. I longed for the relief and freedom of death. It scared me to be nauseous and vomit every day sometimes choking. It was no way to live and my symptoms were barely controlled with meds, patches etc. The faslodex slowly put an end to that misery, so my quality of life returned. My desire and will to live with it. Now I see more clearly the changes that will happen when I am gone. I feel guilt about leaving my youngest child. It's a conflicted time in myhead about the freedom of death from cancer and the drugs - and sticking around to raise my last child. Sometimes I get frustrated by the sheer impossibility of ever being well again. It's so futile. I mean who gets better from malignant ascites, gets rid of a pleurx drain, over comes cancer infiltrating bowel, omentum, liver, lung and all your bones? They tried Doxil and Herceptin and they did nothing. The Faslodex only worked part of Feb, March, April and May started to raise the tumor markers. Who am I kidding? I started Ibrance tonight. My goal to make it through summer break and be with my youngest until school starts. I bought 2 tee shirts at the store and felt stupid since how long will I wear them?. It's hard to carry on living like cancer winning wasn't happening. To live and not look forward or backwards. Forgive me for rambling.
The precious present moment is all we have. Thank you for sharing your poem. I enjoy and benefit from your sharing posts. I hope you feel that you are supported and get something in return as well. Exploring life is good. Lovingkindess to you.
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I come around bco daily, but my energy and attention are limited.
Seem to have worked out a personal triage routine here at bco - what most needs doing?
This seems to be my routine:
1. try to catch up on reading "my bco threads" - this one, scary topic, liver mets, lung mets and light around world
2A. respond to members' first posts, if no one else has
2B. respond to PMs
2C. reply to various topics when I have something new, relevant or exceptional to offer
2D. not be afraid to wade into some conversations with taboo words like dying, death and hospice
2E. share personal news that might be helpful for others facing similar challenges
3. share news like Jody Schoger's death and interesting breast cancer news
4. allow myself time to rest and reflect, to bring what's relevant here - my home topic
5. oh, always sending warm, healing thoughts to all bco members, especially those in tough medical and/or emotional straits
6. have fun taking photos for Rosevalley and Patty
7. ask myself, anything else to receive and contribute?...except it's so busy here that I can't keep up with reading, much less responding
Plus, I'm slowly winding down. Sleeping more. Less focus. More blood in daily ascites drain (thank you Rosevalley for getting me going on daily drains!). Thin. Lowering blood pressure. Signs of this and that. Symptoms controllable with more interventions. Passed my six month hospice review and can keep my team. Grateful!
Continue to enjoy both treasured alone time and extraordinary connections with loved ones. And nature is busting out on the farm - so chicken watching is enough action for most days. Thankful for my senses of humor and belonging. I am truly blessed.
Oh yes, thankful for your good thoughts, wishes, prayers, meditations and reflections - whether in form of words, images or your stories.
My living and dying would be different without you. Thank you!
Loving kindness for everyone, Stephanie
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First blackberries - the buds have given way to blossoms and sepal-lined nests of green fruit. With summer sun, hard sourness will become soft sweetness.. But the prickles always catch and tear our tender flesh.
Living and life so close to dying and death, Stephanie
"Blackberries Are Back"
Blackberries are back. They cling near
little streams. Their eyes, bright
mornings,
make tunnels through the vines.
They see their own thorns in the sky,
and the print of leaves.
At night they hide inside the wind,
ready to try the outdoors on.
They swing for distance, root for
fidelity. The truth is your only ransom
once they touch your tongue.
— William Stafford
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Hi Steph - Nice to see you here. Sorry you are getting tired, your wisdom continues to inspire so many of us. Here is a Blackberry poem by Sylvia Plath - written while she lived in England.
"Blackberrying"
Nobody in the lane, and nothing, nothing but blackberries,
Blackberries on either side, though on the right mainly,
A blackberry alley, going down in hooks, and a sea
Somewhere at the end of it, heaving. Blackberries
Big as the ball of my thumb, and dumb as eyes
Ebon in the hedges, fat
With blue-red juices. These they squander on my fingers.
I had not asked for such a blood sisterhood; they must love me.
They accommodate themselves to my milkbottle, flattening their sides.
Overhead go the choughs in black, cacophonous flocks—
Bits of burnt paper wheeling in a blown sky.
Theirs is the only voice, protesting, protesting.
I do not think the sea will appear at all.
The high, green meadows are glowing, as if lit from within.
I come to one bush of berries so ripe it is a bush of flies,
Hanging their bluegreen bellies and their wing panes in a Chinese screen.
The honey-feast of the berries has stunned them; they believe in heaven.
One more hook, and the berries and bushes end.
The only thing to come now is the sea.
From between two hills a sudden wind funnels at me,
Slapping its phantom laundry in my face.
These hills are too green and sweet to have tasted salt.
I follow the sheep path between them. A last hook brings me
To the hills' northern face, and the face is orange rock
That looks out on nothing, nothing but a great space
Of white and pewter lights, and a din like silversmiths
Beating and beating at an intractable metal.0 -
Stephanie and lalady, beautiful, beautiful poems. What a sunny late spring day - gone long ago, yet so present, and forever...
Wish all comfort and peace today, another warm and sunny late spring day and many more to come .
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This morning, I just happened upon an end-of-life checklist from India and thought I'd share it with you along with one from Australia.
Both lists were compiled by carers of the dying, Bhairav Nath Shukla in Varanasi, India and Bronnie Ware in NSW, Australia.
It's amazing how similar and different these lists are from each other. And how different they are from checklists in the USA which tend to focus on legal and medical matters - advance health care directives, wills, funeral arrangements, trusts for the kids, etc. Hospice doctor Ira Byock does suggest four or five phrases to say to the dying at their end-of-life - "Please forgive me," "I forgive you," "Thank you," "I love you," and "good-bye."
Different cultures, different focuses.
What really matters at the end-of-life?
How can we live now, so to be prepared to die at any moment - even one in the far future?
Much love this morning, Stephanie
These are excerpts - please click the links to read the full text.
12 LIFE LESSONS FROM A MAN WHO HAS SEEN 12000 DEATHS
Deepak Ramola
May 15, 2016
http://projectfuel.in/blog/2016/05/15/12-life-lessons-from-a-man-who-has-seen-12000-deaths/
- 1. Resolve all conflicts before you go
- 2. Simplicity is the truth of life
- 3. Filter out people's bad traits
- 4. Be willing to seek help from others
- 5. Find beauty in simple things
- 6. Acceptance is liberation
- 7. Accepting everyone as the same makes service easier
- 8. If/When you find your purpose, do something about it
- 9. Habits become values
- 10. Choose what you want to learn
- 11. You don't break ties with people; you break ties with the thought they produce
- 12. 10 percent of what you earn should be kept aside for dharma
Top Five Regrets of the Dying
Bonnie Ware
November 19, 2009
http://bronnieware.com/regrets-of-the-dying/
- 1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
- 2. I wish I didn't work so hard.
- 3. I wish I'd had the courage to express my feelings.
- 4. I wish I had stayed in touch with my friends.
- 5. I wish that I had let myself be happier.
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Good post Longterm...I do believe I've nailed Bonnie's list. Perhaps that's why I am not afraid of death? I consider myself blessed because of things that I did, not things others did for me. I am a happy person because I chose to be, not because someone made me that way. I have no regrets, just memories....
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Stephanie- what a wonderful list. I went to the Fuel Blog and read what he meant by each of the 12 suggestions. Wonderful. I was confused by number 12 - 10% kept for Dharma. He meant 10% for charity, acts of goodwill and kindness. When you give to others and sow seeds of love and kindness it grows. Amazing that there is a hostel for dying in India and all kinds of caste member go there. Very interesting article I enjoyed reading it. From my experience it rings true. It's observations from the trenches of life. He must be a very strong individual to watch thousands die and be good with it, full of life and faith in humanity.
Thank you for sharing that this morning. Lots of love to you. You sow the seeds of love and kindness - may they return to you.
Joy and lovingkindness. to each of you. rosevalley
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I imagine a hostel for dying is the same as a hospice here in North America. Wonderful places where everyone knows what is going on.
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Checking in to wish all a comfortable day.
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In the same vein as my last post, I found this interesting quote at the website of Barbara Karnes, a hospice nurse in the USA who is author of Gone From My Sight - the little blue book that many hospice caregivers receive:
https://www.bkbooks.com/blog/death-draws-closer
Dear Barbara: I just listened to your interview on the Art of Manliness. As I go through life I find it useful to ask others what they have learned in any particular activity or endeavor. With the many contacts you have had with those finishing their time here, I wonder what lessons they may have shared with you? What would they have done differently, what would they tell us?
Actually I am writing a book about those various lessons I have learned from the people I have worked with over the years. So those lessons are in my mind right now.
Here are some thoughts: Most people, I am sorry to say, are so caught up in the process of getting treatment (and generally get very sick in that process) that they don't feel well enough to have deep thoughts. They certainly don't want to "jinx" their treatment by thinking about dying and eventual death. I've learned we spend so much time trying to stay alive that we stop enjoying the life we have. I see that as a great sadness that a person may not even know they are experiencing.
Families have their fears and concerns. They are more realistic on some level but generally play the game of "this is going to work" and miss their opportunity to do and say those things that are important.
If you asked a person on the day they were dying what they would have done differently I think they would tell you, if they could (and they can't, it's not like in the movies), that there should have been less treatment for this life threatening illness. They would say they would have done something they always wanted to do and didn't instead. I don't think they would have added another week or even a month to the life they were living with all its debilitation and side effects. Dying seems to come as a surprise. "I did all the treatment, suffered the side effects, gave up my activities, did everything the doctors said and I'm dying? How can that be? I wish I had eaten the dessert that no one said I should have."
The dying process is such that it is in the months before death that a person is alert and thinking about the might have beens. As death draws closer into the weeks before death the withdrawal process has become almost complete. All thoughts are held within. I believe there is a lot of processing of one's life occurring, but on the inside. "What have I done? Who have I touched?" Thoughts and considerations. Each person will have thoughts that apply to their individual life but the key word here is individual. We will look back on our own life's direction, accomplishments, and regrets. It seems to be more of an internal processing, an assessment. These are seldom shared.
As I reread this maybe no one is thinking any of these thoughts as they approach death. Maybe the above is what I have perceived and what I would think if it was happening to me. Maybe the most we can know and learn from another's life choices is not what they say or don't say but from what registers within us. Something to think about.
xxx
Stephanie again - It's time to drain another liter-plus of bloody fluid from my belly. Yesterday was the 9-month anniversary of having my indwelling drain implanted. I figure I've drained over 600# off my now 100# frame (was 122# the week before the drain implant). On one hand it is terrifying to watch my body physically break down. On the other hand, it's a fascinating process to witness.
I feel so fortunate to live on a farm where life and death are in continuous flux. Day and night, light and dark, seasons shift, sky clouds and clears, grasses glow gold, the scent of dust fills the air. All remind me of change and transience. I am so very blessed!
I am sending blessings and loving light for all bco members this morning.
warmly, Stephanie
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Stephanie- Lots of love to you this afternoon. It is unsettling to drain liters of fluid out of the belly that doesn't belong there. I have a matter of fact attitude about it. While I would love to roll over on my stomach or left side and not roll on to the drain site - just to feel un hitched to the catheter...it is not to be. Or to sit in a hot bath relaxing into the water... nope. I so miss that lovely little luxury others take for granted..a hot bath. It would be grand to have my body back, no catheter - no portacath. I just accept that this is the new normal. I have had my drain 9 months as well. We have had them for longer then most. We do what we have to do. We live and move on. It is hard to accept these changes in our bodies and function. You handle it with grace. Prayers your way that you are comfortable and peaceful. Life in cancerland is hard. I wish I could change it back to normal. Gentle hugs.
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I'm fine this morning!
Yay!
Woke with nausea and set to work on reading ASCO abstracts (posted many at other topics Forum 8).
Here's one for this topic:
Variations between physicians in hospice referrals of advanced cancer patients.
Sub-category:
End-of-Life CareCategory:
Patient and Survivor CareMeeting:
2016 ASCO Annual MeetingAbstract No:
10027Poster Board Number:
Poster Session (Board #15)Citation:
J Clin Oncol 34, 2016 (suppl; abstr 10027)Author(s): Xiao Wang, Louise Knight, Anne Evans, Thomas J. Smith; Johns Hopkins University School of Medicine, Baltimore, MD; Director of Patient and Family Services, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Gilchrist Hospice, Towson, MD
Abstract:
Background: Hospice is the accepted best practice for advanced cancer patients with life expectancies of six months or fewer. However, a growing number of patients enroll in hospice for ≤ 7 days, a marker for poor quality of care and patient and family dissatisfaction. In the present study, we examined the variation in referrals between individual and groups of oncologists to assess a potential source of suboptimal hospice use and define targets for intervention.
Methods: We conducted a retrospective chart review of 452 advanced cancer patients referred to hospice from July 1, 2013 to March 31, 2015, measuring hospice length of stay (LOS). We analyzed patient length of stay (LOS) under hospice services – specifically looking at median and very short stays (%LOS ≤ 7) – to examine the variation between individual and divisions of oncologists.
Results: Of 394 successfully referred patients, median LOS was 14.5 days, consistent with national data. %LOS ≤ 7 was 32.5%, including 5.1% who died before reaching hospice. There was significant interdivisional variation in LOS, both by overall distribution (p < 0.01) and %LOS ≤ 7 (p < 0.01), shown in Table 1. In addition, there was dramatic variation in median LOS by individual oncologist (range 4–88, physicians with 5+ patients), indicating differences in hospice referral practices between care providers (cv> 125%). As one example, median LOS of oncologists in the Division of Thoracic Malignancies varied from 4 to 36.5 days, despite similarities in patients.
Conclusions: Nearly 1 in 3 cancer patients that use hospice had LOS ≤ 7, a marker for poor quality. There is significant LOS variability between patients of different divisions and of different physicians, despite similarities in disease course. Our findings suggest differences in perspectives, knowledge, and/or familiarity with hospice between different oncologists, and highlight a need for increased education and training to set a high standard of care.
Length of service by division, table is here:
http://abstracts.asco.org/176/AbstView_176_163900....
Median length of stay on hospice for breast cancer was 20 days, 28% were for less than 7 days, "a marker for poor quality of care and patient and family dissatisfaction."
So grateful to receive hospice care for over 6 months now.
Healing regards and loving kindness, Stephanie
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Updates, y'all?
Shelley, you're heading off on your graduation adventure soon?
Juli, you were trying new meds?
Rosevalley, you're only a few days into Ibrance - fingers crossed it buys you more time. You are a cat with many lives!
Blondie was leaving nursing home for daughter's home?
M360, holding you in healing light.
Patty, you posted here, but I haven't seen you at your topic recently - are you around?
Brendatrue, sending loving energy for you too.
All others, wishing you lovely and love-filled days and nights during challenging times, Stephanie
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I'm a bit behind the times here, having expended myself on yesterday's ASCO abstract postings. Whew!
Here's another end-of-life list. This one by by author and surgeon Atul Gawande.
Atul Gawande's 5 Questions to Ask at Life's End
http://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
1. What is your understanding of where you are and of your illness?
2. Your fears or worries for the future
3. Your goals and priorities
4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?
And later,
5. What would a good day look like?
His book:
http://atulgawande.com/book/being-mortal/
Frontline film about his work:
Healing regards, everyone! Stephanie
PS, Hope to hear from some of you when it works for you. Know you are all in my healing meditations!
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May you all have a wonderful holiday weekend. Wishing you peace, love and time with loved ones. Gentle hugs! rosevalley
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