A place to talk death and dying issues
Comments
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I am so pleased you have pal care involved, like anything to do with BC, once you have a plan in place, you feel a little more in control. My plan has been set up with me dying at home as the end goal. If it doesn't happen then so be it.
Hugs
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I am pleased to announce that I have completed my "Death Binder" with all my notes and instructions regarding memorial service, obituary, whom to notify, accounts to close out after I'm gone, etc.
If one is facing the "end stage," it's a good idea to do this for one's loved ones or executors. It will make it a lot easier on everybody. People won't be scrambling around, all stressed out. You will hopefully have the service you want, and things will get taken care of in some semblance of order.
I will see the palliative care people tomorrow, and we will also discuss some hospice issues. I will want full palliative sedation as I transition home.
L
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I'm all sorted too. I've even gotten rid of my stash of yarn, crochet hooks and knitting needles. I didn't realise I had so much in reserve. My wardrobe is down to the bare minimum, there is not much personal stuff of mine left in the house. Hoping it will make it easier for DH.
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It's very freeing and empowering to strip things down.
I'm still going thru my closets, donating pants and tops that are too big now that I've lost weight on chemo.
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When it comes right down to it,the Beatles were right
All you need is love ❤️
I take no interest in material things anymore. I enjoy an engaging conversation,delicious food and wine.
Only quality time,with quality people. I would rather have four quarters than a hundred pennies!
Love always Chelle G.
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I've got all my papers sorted out as well, instructions are there so that my family doesn't have to question themselves on what I would have wanted, and got rid of a lot of things over the past years.
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I hope you can open and play this....
It's Al Jarreau's "Morning Mr. Radio, Morning Little Cheerios." I think I might want this played at my memorial. It's a lovely song.
(((Hugs)))
Lita
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Sweet!
Tina
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Love it Lita!
Been playing this one often!!! Music is good for the soul!
Love Chelle
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Love that Al Jarreau song + video! Thanks for sharing.
On tough, challenging days, I remind myself that the practice of gratitude is a spirit-lifter. Here's a video that also helps me remember that:
https://www.youtube.com/watch?v=3Zl9puhwiyw
In lovingkindness to all....
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I have been off boards for a long while...sending all of you my love. I just saw GrammyR through her last months on earth. She apologized for my seeing her through difficult times, saying I may be seeing my future with our disease, but I thanked her for showing me strength, understanding and faith in the end. I wish all my sisters peace and love always
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RonnieKay, I am sorry that you have lost such a dear friend. I am sure that GrammyR felt blessed to have you near her during her final months on earth. I am touched by the fact that in her final days she was so concerned about you while you felt honored to have the opportunity to share the time with her. You and GrannyR obviously had a special bond that enriched both your lives. I am sorry for your loss. I wish peace and comfort for you and GrammyR's family.
Hugs and prayers from, Lynne
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RonnieKay,
I hope GrammyR didn't suffer too much near the end. That's what I worry about. They "say" we'll have decent pain relief on hospice, but I've heard different stories from different people. It depends on where the majority of your mets are and how involved they are. Liver/organs vs. brain, etc.
I really don't know enough to say or predict how ANYBODY will go in the end....whether it will be a matter of days, weeks or, unfortunately, months.
Some people are lucky....I know a couple of people who were still able to get around until about two weeks b4 they transitioned. They went fast. And I also know a couple of people who really had to go thru hell for MONTHS b4 they passed.
When it starts to get bad for me, I'm planning to exercise VSED: Voluntary stopping of eating and drinking. The eating part is pretty easy because towards the end most people don't have an appetite anyway, and it's not good to force an "end stage" cancer patient to eat because it's too hard for their body to process food, form stools and push them out. But a person can live without eating for weeks, if not months, depending on how much body fat they still have. (Alas, I have plenty of pounds to spare.)
I'm also concerned about the EMOTIONAL toll on my family.
Last but not least, it makes me SICK that we can put our dogs and cats to sleep, but we can't do that for the people we love the most. Taking the "end of life options" barbiturate slurry drink is not necessarily the answer for everybody either. What if you can't swallow anymore? What if you puke it back up? What are you supposed to do then? (If one is "religious," it also goes against one's beliefs and could be problematic for them, too.)
I've written this before, but in 100 years, euthanasia will hopefully be a sacrament. They won't use it indiscriminately....they will use it when it's warranted. E.G., no responsible pet owner brings their dog in to be put down for an ear infection or an allergy - they do it when the dog/cat has cancer or some other incurable disease whose painful symptoms can't be minimized with meds anymore. The dog/cat is suffering and to keep them alive is inhumane. It should be the same thing with humans with a terminal illness....and IMHO, it should be MORE so for humans, but the powers that be just don't see it that way.
Sorry this turned into a diatribe. I didn't mean for it to be that.
Once again, RonnieKay, sorry for your loss.
L
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Dear sweet Lita...I hear and understand every word & thought you express. My mom got her lung/liver dx and was gone in 17 days. Our whole family gathered around during those days, administered hospice meds & it was what we called a peaceful death. It's how I want to envision my last days on earth...but as you say, we just don't know.
Rene had a difficult time, physically, in the end...due to her arm and leg being paralyzed. She was in her bed for over the last month, after suffering a couple of falls. Being a nurse, she feared the cancer was causing the paralysis but tests didn't confirm that for months. Then brain mets were found and it made sense. Why they'd not done a brain scan earlier seemed an oversight, but she'd committed to no tx after having complications from previous tx, and to let God's will be done and she so bravely accepted the trials. She never wanted to burden her caregivers...even when I argued she needed to voice her needs. It was painful to go on the bedpan, as her arm/leg made it impossible to go on the commode so she voiced wanting a catheter two days before passing...a blessing it wasn't needed.
I had taken her on a walk, in the wheelchair, at the park just before her leg became totally paralyzed & that was her last trip outside and was in Sept. When I shared with her that it saddened me she couldn't have the sun on her face...she told me that as your life changes, things don't have the same importance as when life is normal. She said as long as she was comfortable in bed, it was ok to see the sky and trees through the window. She uplifted my spirit in so many ways. She also ate birthday pie on Oct 29 with gusto. Three days later, she said she didn't care to eat, and said it was a sign that her body was adjusting to the end. To my eyes, that really was the only sign, other than being a bit anxious, that it the end was coming soon. Ever the nurse and the brave English woman.
To go from eating and visiting on Sun, to not wanting to eat and sharing that she hoped she had had a positive impact in life on Wed was a bit worrisome to me...but I knew I'd see her Sat and that she was transitioning to her new life. Her son's text to me Fri hit me hard...but I realized she said goodbye to me Wed...and knew that she was ready to go & had gained her angel wings. She had nurses with her...and they assured me it was peaceful. I still wish she'd had her son (or me) with her. Rene moved here from Fl and most of her friends were older and lived in the mobile home park she moved from when she went to Assisted Living.
She was on morphine during the day along with decadron and stool support, so she was comfortable. Looking back, I may have stayed too long in some of our visits...but I never wanted to leave her alone. At the end, she said being alone was ok. She was deeply faithful & when she had nervous fingers, she found her rosary. She felt a bit out of touch when she moved to her last place, since they had no wifi. We tried to hook it up but it never worked. She was happy watching old movies and listening to music.
I've gone on & on. I do so hope for peaceful transitions for all. I've made no plans for my end, mainly because Iam doing very well...but I also know it can change in a heartbeat. I take so much from all of you...strength and thanks in sharing the most precious and difficult realities that come with knowing we're facing the end of life in a much different way than we, and our loved ones, had ever planned on.
Love & peace...not a diatribe at all Lita...words & thoughts I'll carry with me always.
Ronnie
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Dear Sisters,
This Memorial Pool Dance just has to be shared ! I hope you all love it and are inspired by it as much as I am!
https://www.seattletimes.com/seattle-news/friends-...
We just laid my precious 93-year old Mom to rest (with COPD). My 3-year marriage has paralleled Mom's 3-years on/off hospice, and now my 2nd year MBC Dx. So getting my ducks in a row is front and center for me. I am dragging my unwilling DH to tour and dine with me at my favorite Independent/Assisted Living communities, until his retirement in 4 years.
Love to all of us, and smooth sailing for a gracious life and death, like my Mom.
P.S. At the end, Mom spit out any hospice med's they tried to give her; With her Mensan (brilliant, clear) mind, she wanted to be fully present and aware for the transition journey! Go Mom!
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Dear RonnieKay and Lita,
Thank you for such true and heartfelt words, open hearts, Reality. "This IS the way it is". I prefer Stable Reality (truth, fact) to Instable Fantasy. Great that we can - and must! - talk about this stuff.
With lung/lymph mets pressing on my esophagus, choking on food - I am quite encouraged and inspired to see my Mom reject morphine and ativan at the end - (With her COPD, SOB, inability to get enough air, basically choking!) - To just Trust the Higher Powers that be, that her/my death will be gracious and safe somehow. I'm practicing being at peace with choking to death. I used the inhaler for the first time last week, with several threats when I didn't use it. The Pulmonologist just referred me to ENT/Ear-Nose-Throat MD as my choking is "above the lungs".
Years ago, I read Dr. Raymond Moody's "Life after Life". He interviewed 150 NDE/Near Death Experiences. Then summarized into 50 most representative case examples. Everyone reported that at the moment of unbearable pain/fear/death, their Essence peacefully and painlessly slipped out of their bodies, floated overhead, watched. No fear, no pain, Just LOVE, immense Love, safety. Happy Journeys.
Thank you all for allowing me to process that which is ahead, here. My DH, bless him, just isn't ready to engage any of this. I got the flu for a few weeks (right after Mom passed), and I was so tired, brain fogged, and mentally incapacitated, that I realized I MUST plan and complete updating Will and purging stuff, Bequests, ASAP. Is it time for DNR or Hospice yet?? I'm trying to prepare, not jump the gun! Quality of Life?? This is where my struggle lies. Mom and Auntie were on Hospice for 3-years, they just kept on having it renewed. Comfort care, not Repair care. Important distinction.
So, we have 2 trips planned: Christmas with his family in Montana; and January Bucket List Train trip to South Calif where some cousins live. I'm asking MO for temporary reduced dose of Rx. Letrozole so that I can reduce migraine SE for these trips.
Thanks all for letting me ramble. May each of us surround ourselves with our own preferred style of Love, Light and Companionship (or privacy) for our Twilight Journey. My love to you all.
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Grace....It's a good idea to have an advance directive and DNR (if that's what you wish) in place just in case. I kept stalling and stalling about filing these, and then 20+ brain mets mind the decision to finally do it for me. I am at peace that these documents are now in place.
L
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I also suggest researching if your state has any specific forms/requirements. In California, the official state DNR form is a Pre-Hospital Do Not Resuscitate that only applies to EMS. After you are admitted to the hospital, a POLST (Physician's Orders for Life Sustaining Treatment) applies if you have one on file. The POLST is much more comprehensive than a DNR and includes things like medical interventions and feeding tubes. California doesn't have a state POLST registry yet (two counties are in registry pilot), but my hospital was aware of my POLST within days of my doctor signing it so I know that it's part of my official medical records. Several other states are using POLST forms, so it's something to look into if/when you reach that point.
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Hi all,
We thought you might appreciate this new blog series from Breastcancer.org:
--Your Mods
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Thank you, Mods. Those are very helpful.
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Lynne, I appreciate that you posted that list a few pages back.
I know I will be cremated and my ashes spread under the pines in a woods by a meadow. I know I will ask a dear friend to offer ceremony for me in a very natural environment, acknowledging that I was of the earth, trees, stones, moon, stars, sun. I am stardust and going back to stardust. I may return or may not. But legally, I am unprepared.
If an oncologist I had an appointment that month is right then it is past time to prepare. I find all there is is driving to appointments, scans, struggles to get good care, more struggles on the next try. All keeping me from doing what I would want to do with, say, my last six weeks or months of life.
So frigid here it is dangerojsnto travel and perhaps break down on the long drive so Hubby and I decided to cancel a CT scheduled for tomorrow morning. Instead we will be researching other choices for me besides the chemo and other allopatic treatments. And I will be preparing the legal paperwork and making plans so my family will not be lost in trying to do what would have pleased me.
My mother's death too so long. Short version of an ordeal is the final night when she died was the most beautiful, even peaceful experience. She was in a coma. The music we played for her, her breathing with the music, leaving at last. My sister and I were alone there. We walked down the hospital hall later leaning on one another and laughing and crying, we were so very touched. I want that again for my family.
If I need a nursing facility, instead of being at home and too much for my husband to handle, then I have already chosen one in the countryside near here, a lake, wooded lawnscaspes, true gardens, hospice comes in. Visitors anytime. But I have to be on medicare for us to afford that choice. Checking at out this week.
I need to talk about this. I face it. What I did not appreciate was the most recent oncologist not being clear on my prognosis, in his opinion and what can be done for me now. It wasn't until I could read his medical notes that I realized he meant me and he meant now for hospice.
I am leaving my fake tall beautiful prelit tree up all year, I love the lights.
Going to send that request to my friend now. I have always seen her offering my last ceremony. The first day I saw her coming to ceremony she was at the edge of the parking lot, I was walking from the pavilion. All the hair on my arms raised up. Hers too. We have traveled together many times, we think.
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As the year comes to an end, I share with my D&D friends a poignant poem:
The Meaning of Birds
Charles Smith
Of the genesis of birds we know nothing,
save the legend they are descended
from reptiles: flying, snap-jawed lizards
that have somehow taken to air. Better the story
that they were crab-apple blossoms
or such, blown along by the wind; time after time
finding themselves tossed from perhaps a seaside tree,
floated or lifted over the thin blue lazarine waves
until something in the snatch of color
began to flutter and rise. But what does it matter
anyway how they got up high
in the trees or over the rusty shoulders
of some mountain? There they are,
little figments,
animated—soaring. And if occasionally a tern washes up
greased and stiff, and sometimes a cardinal
or a mockingbird slams against the windshield
and your soul goes oh God and shivers
at the quick and unexpected end
to beauty, it is not news that we live in a world
where beauty is unexplainable
and suddenly ruined
and has its own routines. We are often far
from home in a dark town, and our griefs
are difficult to translate into a language
understood by others. We sense the downswing of time
and learn, having come of age, that the reluctant
concessions made in youth
are not sufficient to heat the cold drawn breath
of age. Perhaps temperance
was not enough, foresight or even wisdom
fallacious, not only in conception
but in the thin acts
themselves. So our lives are difficult,
and perhaps unpardonable, and the fey gauds
of youth have, as the old men told us they would,
faded. But still, it is morning again, this day.
In the flowering trees
the birds take up their indifferent, elegant cries.
Look around. Perhaps it isn't too late
to make a fool of yourself again. Perhaps it isn't too late
to flap your arms and cry out, to give
one more cracked rendition of your singular, aspirant song.0 -
Beautiful, powerful poem, Brenda.
L
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Brenda - I really love this poem. Never read it before. Thank you.
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I know this isn’t a terribly active site, but seems like a good place to share some thoughts.
In early December I received the TMs and scans that show I have progression to liver and lung. I’ve been at this Stage 4 stuff for four years. So, not really a shock. A new, more aggressive plan was put in place. New chemo started December 27. Usually when a new plan starts I’m optimistic that this is THE ONE to give me significant stability. This time, I’m not.
Treatment given, harsh side effects being dealt with...
Yesterday (Saturday) I awoke with sinus congestion which led to dizziness. Not a new non-cancer thing to deal with. But, through the day my blood pressure kept rising ( I monitor because each treatment does something weird to my moderately high bp). All this to say I ended up in the ER. Dizziness plus what was kind of panic attack bp.
Sitting in the ER getting my fluids I’m reflecting on why I cannot get my bp under control. And I sort of have a revelation that it’s ok if it’s not. 150-160/85-90 may be my bp now.
That leads into the narrative I’ve been giving my brain sine the first of December “ this is likely my last Christmas.”
Is the narrative what’s raising my bp and causing other stress issues? Likely. Should I be in denial that this chemo will really put the brakes on everything that seems to be progressing more quickly. No, I think I need to be at Peace with Whatever. I think, at this point I need to just BE.
I’ve had, overall, a wonderful life. As everyone, I’ve faced significant challenges, but gifted with more amazing people, career, experiences. And all I really want before I die is to know my loved ones will be fine and have good futures.
So, long, rambling middle of the night thoughts from someone deciding peace and acceptance is the only healthy path right now. There’s no fighting this. There’s BEING.
Thanks for all who visit here.
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Kaption - I've been practising (or trying to) being at peace with whatever and just be. You said it so well. Since May of this year, I'm going downhill with so much progression to liver, abdomen, lungs etc. Different chemos have failed me since all this started. My current tx is most probably the last option. I know my time is very limited. I'm so thankful to this community that gave me support these last 3+ years.
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Linda- oh, I’m sure I won’t be at peace everyday. But, it was a small a-ha moment to accept that I’m not going to have that perfect bp. Don’t know why that triggered the “stop fighting and just BE” revelation. But, it was a step.
We work so hard to be optimistic with the “ fight” ( never liked that term) for our own health and so our family and friends are hopeful as well. This last progression gave me a pretty clear message. I’m not out of drugs, but at some point I’m likely to stop treatment and shift to palliative and hospice support. Who knows. I just know I’m ready to say “ it is what it is.” Use the love and support of family, friends, these boards, and my medical team.
My prayers are with you for comfort and peace.
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Like many, I've been assuming that hospice will help me when I need it. This scares me:
https://www.nytimes.com/2018/01/06/opinion/sunday/...
Tina
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I hear you both. Just to be. I shift between all decisions still. But the one thing I do know is to spend time just letting it go as it will. There are decisions to be made this month - chemo, palliative and hospice, or alternative with palliative. This is the year where there are so many things I want to get done. Being on chemo and losing quality of life to the complete sickness I feel when I took the Xeloda, that just doesn't ring the best choice for me. Right now I have 3 weeks to regain strength and stamina in case I do want that option of a chemo infusion. Though I lean to the alternative / palliative and living life to the fullest. Gosh, I walked to the bathroom all by myself today when out for brunch and I didn't get winded or feel like collapsing. Mid-November I was practically carried there and finally quit going for brunch at all. No way to live. And it wasn't working anyway, liver lesions growing like wildfire despite the Xeloda chemo pills.
Me, I stress over the pain. Brush the dog, liver hurts. Raise my arms, liver and breasts hurt. Put on own socks and shoes, liver again. Until there is a bruised overall debilitating pain that stops me from breathing. Wear a pant with firm waistband, liver. It is real. If I can avoid creating that pain, if only.
I don't like the wording of fight either. I don't feel like fighting, never did. I just want to teach the immune system to do its thing correctly. Or teach the cancer cells to die the way they are supposed to. I see them as meadows of wildflowers and they need to go to normal seeding, not prolific masses. Calm beauty, appreciating my body through the worst of it. But then I get frightened and try the next more awe-striking approach that I cannot live with or through.
Just BE. That thought will be in my reflections for a long long time. Thank you for sharing your revelation.
Diane
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Thank you, Kaption, Linda and Bluebird.
I've been in the de novo Stage IV game for a little over a year and a half. I'm going down quickly. I have 20+ brain mets that give me headaches and leave me dizzy all the time (they can't do any more brain radiation); mets to the spine are growing and strangling nerves, leaving me with no control over my bowels, and mets to my liver and other organs are growing. I can't drive anymore because I have a big blind spot thanks to brain mets. I'll be starting another chemo after I finish another series of rads to the spine. We may have to try TWO types of chemo because the MO says my organ mets are mutating differently from my bone mets. What works for the bones doesn't work for the organs and vice versa. I'm already on palliative care to supplement my Tx.
It is what it is. I have to live day by day, and not plan more than a week or two into the future. The Whole Brain Rads I received in Sept were only supposed to give me a couple of months, so I'm grateful for whatever time I have left. Fighting Mr. Cancer on three fronts (bones, multiple organs, brain) I could go in 6 wks, 6 mos or 16 mos. Who knows?
All I can say is I will NOT prolong my own suffering when the time comes. Hospice will support VSED (voluntary stopping of eating and drinking) so I can go out a little faster. There will be no need to drag it out any longer than necessary. I know where I'm going. My Lord and my antecedents will welcome me to my eternal home. My DH is still young enough to find another companion, travel, do sports, and create a happy life. My DD is in her mid-20s and doesn't really like little kids, so it's not like I'll be missing out on the grandchildren I'll probably never have.
My pastor just emailed me a draft of the program for my memorial service. It looks good. All he had to do is type in the "expiration" date.
Incidentally, heart disease is still the NUMBER ONE killer in America, out-ranking even cancer. I wouldn't mind having a heart attack in my sleep and not waking up. Or I could go out like the late Ed Lee, former mayor of San Francisco. He collapsed in a Safeway grocery store last month and passed away in the hospital a few hours later. No muss, no fuss, no suffering. That would work for me.
L
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