A place to talk death and dying issues
Comments
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hey calico - hope your break helps your holiday be even better. You can always make a firm decision on what to do by your jan appt.
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As I start my 4th treatment plan this year, I wonder if this really is the beginning of the end. I was in remission over a year until last January, and every four months something new pops up. I thought I had adjusted my.mind to being terminally ill, but I feel so disappointed that this last treatment failed. CT scan Friday will probably show what's new or worse. Not a good time of the year to have to act cheerful for my family, when I am overwhelmed by sadness. Wilsie
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Hi, Wilsie, my heart goes out to you. I know it's not rational, but I always take the failures personally. I feel like I flunked the final exam for a course I didn't know I was taking. In other words, a bad dream. I'm right where I always hoped I'd never be.
My onc has a bad habit of saying "You failed this" and "You failed that". He caught himself the other day, and said, "Well, you didn't fail, but the drug did." Thanks, doc, for getting that!
It's terrible that this is being pushed in your face at this time of year. I scanned what you've taken so far, and if it's up to date, you're nowhere near the end of the list. Try to take some comfort in that.
xoxoxoxo
Calico
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thank you, Calico. I usually bounce back after a day or so, it's just that the dreaded CT will not be.done until Friday,and I know it will be worse. Just a case of feeling sorry for myself, you all are the only ones I can boo hoo to. My family draws their strength from mine, so I will shape up in a day or so. I, too, feel like I failed. Isn't it odd that you can be worse without feeling worse? Wilsie
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Yes, Wilsie, it is odd. In my nine year odyssey, I've never had any symptoms I could point to, and say, "Oh, the reason I feel like this is because of the cancer." The reason I've felt bad is because of the treatment! I have to say, though, I had a good run on the hormone blockers and had no side effects there, but it didn't last, not that I expected it to.
I'll be happy for you when the CT is over. How long do you have to wait for the results?
xoxoxox
Calico
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I remember years ago seeing the obituary of a man and admiring the simple sentence that was his obituary; I don't remember word for word what was written, but the simplicity of it stayed with me. It went something like this.
"Name" was a good friend, fine son and fun brother, a loving husband and wonderful father.
That was it. Short and sweet and to the point. If you can say you were a good person what more is there to add? Most folks are not what they do for a living and who cares about where you went to school and lived, degrees yada yada...who survives you etc. It might be funny to add "___was perfect in the eyes of his dog Rufus or cat Alexander Pusskins!" Haha --- Or to have no mention at all, no marker - just left on a breeze!
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Wilsie and Calico, prayers for you two.
So many thoughtful comments here. Rosevalley, I know I appreciate being able to figure out some end of life details so dh and ds aren't left to make such heavily emotional decisions while grieving. I, too, think sometimes of those who go suddenly and have nothing in place.
I was reading a copy of Cure magazine at the onc's last week while getting a zometa iv, and came across the following article on hospice. I rather liked the message and thought I'd post it here:
Hospice Provides Time and Space for End-of-Life Discussions
At its best, hospice provides time and space for end-of-life conversations.
BY MATT STONE
PUBLISHED WEDNESDAY, SEPTEMBER 24, 2014
Hospice is not really about death; it's about how one chooses to live his or her final days. But our culture's reluctance to talk about and face death honestly often means people and their families do not experience the richness of the hospice journey.
One of the saddest parts of working with hospice occurs when a new patient comes to our service and then dies just a day or two later.
Most of the team doesn't have a chance to care for the patient and the patient's family. The myth is that hospice care is only for the last days of life, but hospice is much more holistic than that.
We care for a dying person's body, mind and spirit, but we also provide guidance and support for family and friends as they accompany their loved one. In fact, the word "hospice" is rooted in the image of a resting place for worn-out pilgrims.
As a hospice chaplain, my job is not to argue with patients' spiritual beliefs or convert them to my own religion. My calling is to understand their spiritual journey and provide care for them based on their unique spiritual understanding. I have had the honor of hearing a rabbi sing the Shema, being present as Catholic priests anoint the sick and listening to Buddhist monks chant with those transitioning out of this life into the next.
During hospice visits, my goal is to offer my full presence and a spirit of peace while the patient decides where the visit goes and what we'll talk about.
Sometimes we talk about life and reminisce about meaningful memories. Other times we watch a favorite TV show or listen to music. Sometimes a patient wants to explore harder terrain by pursuing reconciliation with a distant relative, discussing fears about death, exploring hopes for eternity or planning the funeral service.
I remember a patient named Diane who had breast cancer for a decade. She threw herself fully into cancer fundraising walks, attended support groups and walked with many friends through their final months. During her hospice admission, she told the nurse, "I want the chaplain to come visit me, and I want him to help me plan my funeral. But I want him to know me."
I made my first visit the next day. We had three wonderful months to get to know each other, and I was deeply inspired by her passion for life and intentionality in death.
During our visits, Diane selected scripture readings and songs for her funeral. Her favorite movie, "It's a Wonderful Life," inspired the bells found throughout her home as a reminder that "every time a bell rings, an angel gets his wings."
At her daughter's urging, Diane decided she wanted people to ring bells during her funeral service to remember her in a special, personal way. Hundreds of angels got their wings that day, and her family was greatly comforted by experiencing her presence and spirit one final time.
One of the lessons that people such as Diane have taught me is that we tend to die the way we live.
So, live out of the deepest part of yourself, love well and have the courage to have hard conversations and face death boldly when it is time. Welcome the help and support of your medical team—even when it is time for hospice. Then you can experience a death worthy of a beautiful, courageous and passionate life.
Matt Stone is a chaplain with Honor Hospice, Colorado's only hospice owned and operated by physicians.0 -
Calico cat- I am amazed by what you said, that the treatment made you feel badly and never the cancer. I can't say that. When the cancer eats out the bone marrow and breaks ribs, tanks my blood counts and makes me ache in all my bones- it hurts. When i take the meds/ treatment I feel better for a short time then feel like shit again and again, Lately it's been because of recuring bladder infections on top of the side effects of aromasin. Notice it's 3 am and I have been laying awake thrashing around for 5 hours, never comfortable,not able to sleep and dreading night time - too tired to enjoy the day time. What fun! So even if you have "life" it's been so mauled by SE of these drugs as to render it useless. Life is more something to endure rather than enjoyed in my book. It's chronic joint pain, sleepless nights, aches. I pull it together enough to put on a happy face for my family and in the dead of night I wish for relief. The big existential relief of no body, no drugs, no cancer. I am losing my patience with all of this.
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So far, Rosevalley, I haven't had any treatments that make you sick, so in that way I understand what you are feeling. In fact, my tumor markers say I'm doing well. So why do my ribs hurt do much. The docs and nurses can't answer that. It did make my left shoulder pain better quickly. The ribs, which weren't hurting before, hurt like hell now. However, I'm just dancing with this thing right now, learning as I go. I'm truly sorry you feel so horrible. What would happen if you didn't put your brave face on every day? I sure don't. When I'm miserable, it's pretty obvious. My mom doesn't like that I'm in pain, but she is with me through it.
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HI, Rosevalley and Duneskeeper, I expect it's just a matter of time before this evil disease settles somewhere it can directly torture me. Right now, it's in my lungs and liver, pelvis and lower vertebrae. Why doesn't my back, at least, hurt? No idea. Maybe there aren't that many pain nerves in the lungs and liver, so they aren't sending out useless "SOS" signals.
I don't seem to be able to make myself exercise. My subconscious, I think, tells me, "Wait until you're well to exercise." Since that ain't going to happen, I'm not sure what to do. I run out of breath so easily, and I hate that feeling. I wonder if I'll feel better or worse with 3 weeks off the Abraxane.
I can't really talk in terms of prevailing or surviving this. I can only endure it, and look forward to a peaceful place of emotional and physical non-pain.
xoxoxox
Calico
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It's sort of funny to think about the little things that give us comfort. I had a life insurance policy for decades that I let expire because my children were grown and on their own. Two years later, my Stage IV BC dx and no life insurance. I researched and researched and found an Accidental Death policy that would pay should I die due to an accident. It didn't cost very much but my DH wanted to know the point of purchasing this policy. For me, it's the small comfort having this protection in the event of something accidental since I didn't have a life policy. I don't know if any of you can relate this, but it helps me. Just wanted to share my irrational thoughts.
Amy
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I understand, Amy. I have been paying for long term health car since my first bout with BC in 1997 I realize now that I will likely have hospice instead of using that, but who knows? It makes me feel better. Wilsie
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Dunesleeper- I can't sleep hardly at all and it's effecting me mentally and physically- just ruining a perfectly sunny day mild and warm. The aching and stiffness are constant and can be miserable if I walk alot, but it isn't the dull inside pain and aching of the cancer eating out the marrow. I don't have that right now. Thankfully, but have had several times in the past, which was why I am so surprised you could have traveled so long on this stage 4 path not experiencing that! Yay for you. Lucky ducks. I am just so sick and tired of always feeling LOUSY, exhausted and stuck in a mental fog...hoping for the day to be over with. I finally got to sleep at 5 - got up at 10:30. My kid comes home in 2 hours to start her happy chatter on where ae we going what are we gonna do??? ugh... Too bad she can't drive and I can just hand her the keys.. go for it. Fridays are so hard it starts the weekend of everyone home and wanting to do Christmas activites all day... my house is a mess and I need to mail 2 packages. ho ho ho no holiday spirit.
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Hi, Rosevalley, wishing I was your neighbor and could run those packages to the post office for you. Heck, I'd even pack them for you, but I know it would be so much better if you felt well enough to do it yourself.
The breathlessness is much worse having had the Abraxane on Monday. I haven't known what all to blame that on, but I'm pretty convinced now.
May your spirits rise and tumor markers fall,
Calico
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Calicocat- I got a second wind after mugs of java and vacuumed the entire house, 2 loads of laundry, made dinner, folded and put it all away, got one bathroom and dishes done... packages tomorrow.. I should never post when I am exhausted.. depressing. Being up all night just puts me in an evil mood. My apologies. I hate night time... I have performance anxiety... the non performing sleep cycle courtesy Aromatase inhibitors. Last nights score - ZERO. contemplating a hot bath... steam my joints and make me sleepy??? fingers crossed. Promise no posting if it ends up a wash out! haha Trying to practice compassion on the rest of you
....you might not hear from me for a while. All I want for Christmas is some ZZZZZZZZZZZs! I am starting to understand why Michael Jackson got so desperate. My MO doesn't do tumor markers and spirits can only go up from here.
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Raro-thanks for sharing that. I really needed to hear that.
V
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Raro, thanks also from me and thanks, V, for reminding me to post. My sister described being with a dying person and being drawn in to an indescribable sense of "enlightenment" for lack of a better word. Not a bad experience at all, she said.
Rosevalley, I read on another thread that they give magnesium and zinc to nursing home residents when they can't sleep. Magnesium is a muscle relaxant. My onc gave me a bottle of melatonin (you can't buy it here) to help me sleep. I'll try magnesium next time though as I'd prefer to produce the melatonin naturally, which I seem to be doing at the moment with so much darkness.
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Good GOD, Rose! I'm wiped out just reading what you did today. I helped (a little) make Christmas cookies. I finished my Christmas shopping, failed to score a refill for my pain meds (they run out of the oxycodone so quickly it's stupid), and that's about it. Those pharmacies put me in a terrible mood, so that's about all I can say for now. I did write complaints to Rite Aid and CVS.
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Rose BIG HUGS
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Dunessleeper- I used to be able to do so much more. Makes me mad. I could hike all dang day and be happily wiped out! Today was a very good day. We have a lovely state park called Silver Creek Falls. It has gorgeous water falls surrounded by Huge old growth Doug Fir trees. There is a very old lodge built in the 1930's with stone fire places, fabulous paneling and wide porches. They had their Christmas festival and it was wonderful. Bag pippers and banjo playing quartet, cookies, cocoa, wreath making and a ton of craft making stations. My kid made a ton of lovely crafts and a great wreath. The music was super and I walked a lot... like a old lady... haha! I almost bought a cane in the store there! At the age of 56... thanks AI's! But I was up, out and happily engaged- it was worth being sore! I love their Holiday festival and we try to go every year. Fog socked in the valley like a blanket but up at the falls 2000 feet it was sunny! What a nice day. A day to forget cancer is a good day.
Blondie- right back attcha! Nice to see your post!
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What a lovely day, Rosevalley! It was fun reading about it!
xoxoox
Calico
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Rose that 4 me is the hardest, my head wants 2 d o things but my body won't cooperate. Like making cookies, walking the mall, walking anywhere,lol
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I actually went to the mall yesterday and took the bus and managed to stay on my feet for an hour - a new record! The lack of mobility combined with pain is the worst se I have right now - it takes forever to get anything done but I just do little bits and ask for help when I have to - had my friend's son put the tree up and it took me a week to decorate it but it's done and it makes me happy - also was able to do some baking but what used to take a few hours takes three or four days - I can only do one batch of anything and then have to rest - but like I said - it makes me happy and keeps the depression down to a dull roar.
Rose, thanks for posting about your day - it let me live vicariously and I loved it.
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Dang, feel like doors are closing and shutting me out. Losing so much. Went into the city the other day to see the tree and the holiday windows. Used to be able to see them all. this time could only see a couple then got too tired and had to head home. I am jealous of my daughter with her life ahead of her. Recently married and setting up her home. saving up for a house, looking forward to when they will start their family etc. While I a am clearing things out she is acquiring stuff,(she doesn't want my stuff) Oh well I had my life just too bad that it is slowly coming to an end. Heading to the mall to do some last minute gift shopping today hope I can finish it all up.
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I need 2 get started n don't have the energy to do that
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brendatrue, loved the advanced directive for conscious dying. I am going to copy and paste that and work something up. I have thought about people I don't want with me but need to think about those I do want with me. This thread gives so much helpful information for us stage IV gals. Somehow I just know my dying will be peaceful.
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Hi, ladies, just missed you gals and hope things are as good as possible for all of us. Would love to hear what you've been up to, good or bad.
xoxoxox
Calico
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Hi Calico. I've been busy with Christmas stuff. Did you have a good holiday? I've had thoughts about dying a lot. I have a toy I decided against giving my great nephew and I wonder if I should just keep it in case I won't be here to give it to him next year. I was I'll for a couple days and became afraid I would have to go to the hospital where some complications would arise and yada yada yada. I was afraid and tearful but pulled myself out of it. I had a strong desire to ask my mom how to die bravely and peacefully but resisted. I need to go talk to a priest, but my aversion to Catholicism grows stronger every week. Other times I'm OK with it. I look forward to my scan this week and hope that it doesn't show progression, but the different pains I'm having suggest all is not well. Still, barring any unforeseen misadventure, I should still have years. That's about all. I got some nice things for Christmas, and people liked my gifts. I keep buying things for myself, but I hope that stops now.
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Hi Dunesleeper, you can talk with a social worker or a clergyperson who isn't a priest. Your hospital will have one, or if you go to a large cancer center they'll have people you can talk with.
I hope your scan turns out perfect,
Pam
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Hi, Dunesleeper, so glad you had a good Christmas and didn't have to disturb your holidays with a hospital pit stop. I think a lot about dying around holidays because the question in my mind is always, "Will I be here next year?" Nobody knows that, BC or not, but for us, it's more than an academic question. I was raised Catholic, and went to Catholic schools, but for me, it never provided any practical help or solace with life's problems. I now turn to more progressive spiritual practices and people aligned with them, and Buddhism, to seek answers on how I can live and face death that will come sooner rather than later.
I wanted some Christmas earrings and found scads on-line at JC Penney's. There were so many I liked, at such a good price, that I bought about 10 pairs, and had my friends pick out the ones they liked and gave them to them. It was fun seeing them wear them.
A local resort has a great buffet and hubby and I went there for Christmas lunch. The resort is special to me because it's the first place I went to without a wig after my first battle with BC. I'm back in wigs again, but the onc and I are supposed to talk next week about a new chemo, at least for me (Doxil?) that doesn't make hair fall out or mess with the fingernails (he says). I'm in a wait and see mode.
Good hearing from you and hope your scans look good!!! Happy holidays to everyone else, too!!!
xoxoxoxox
Calico
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