A place to talk death and dying issues
Comments
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Oh Rosevalley, I joined bc.org just for you and the other ladies with ascites, paracentesis and implanted drains. I so feel your pain. Though I'm staying on top of the N&V better than you right now, the amount I'm sleeping and how little energy I have is amazing. I couldn't even imagine ironing shirts, though easy and mindless is plenty most of the time.
When it's time for hospice, you will know, dear Rosevalley. They've done a marvelous job alleviating my nausea with various tips that I've tried to pass on here. But it is so very miserable.
May you find the help and allies you need when you need them. I wish I could do more than offer suggestions and support from afar.
Honey, I am sending a big warm virtual hug from California, Stephanie
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I miss u guys can't stop cryin n can't shut my head off. Thanks so much fair the card shower it made me smile. I love u all. Thanks slow, daisy, rose, patty, Mattie, Katherine for keeping me to getting...
Hope Ll have a pain free weekend..
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Rose, does your palliative care program offer on-call services? It sounds like you need a consult and intervention! I hate that you are suffering so much physically while also dealing with your family's emotional pain, your emotional upheaval, and the meaning of so many changes and overall decline. Do you think you are clear about what signs will tell you that hospice care is a good choice? I know we've talked about hospice not only adding quality of life but also meaningful quantity as well as additional support for you and your family. Trust me: I know it's not always an easy call, and I don't wish to suggest I know what's best for you. I hope you know my intention is honorable. I am keeping you in my thoughts and hoping for clarity and comfort. And peace, always peace. In lovingkindness...
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Blondie, who do you trust that you can talk to? If you can't stop crying & can't shut your head off, you need extra support! Whether it's here on BCO, a family member, a friend, a member of the hospice team, I hope you will reach out & let someone know how much you're hurting and that you need a listener, a hug, or something else that will ease your heart and mind. Remember we care & are here for you!
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PattyP, did you get out of the hospital? Are you feeling more comfortable? Thinking of you & your family.
Barb/Keesmom, hope you are healing well from your surgery.
Skylotus, Hortense, M360, holding hope for getting what you need and knowing always you are loved.
Xavo, Stephanie, Letranger, Zills, ForestD, GatorGal, such kindness and wisdom you share! Forgive my lapse in memory, all others who show up here.
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Oh, and Dunesleeper, I've been thinking of you, remembering some of your posts, your concerns about this winding road and what might happen at the end. Bon, good to hear from you, too!
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It seems everyone is hanging on trying to make it through the holidays.. Carla (freebird/ dec 8) Dunesleeper (dec 25) both died. Today marks the turning point of a partial to complete bowel obstruction I think. I just drained off 500cc in a feeble attempt to feel better and then threw up absolutely everything I have drunk today. How does the body make fluid in the absence of keeping any down? cruel.. No amount of zofran is helping. I feel better only after vomiting- then the cycle starts again. So I have some decisions to make.
For some of you who have PMd me.. I take reglan and have for weeks. I have a compazine script and will fill itin the morning. The doxil was just to help me make it through the holidays and it's Dec 27th so ha! Made it, not very gracefully but done. I decided not to use the fentyl patch because of the obstruction. I can't sleep.. shaky and my feet are swollen and driving me nuts tingling and weird. I wonder if any of the meds I am taking get absorbed or just disolved and barfed up again?
I read Torridon (UK fellow ascites sufferer) post where she wishes to be quietly put on hospice and allowed to slip away. I hit that wall tonight. I too want the same, even though the kids are all here. Too bad every 5-8 hours I puke my guts up. Otherwise I am fine with eating and drinking nothing and waiting. I told my DH that I made it through the holidays and he got what he wanted, now it's time for me to go. Enough of endless misery. I have suffered enough. My body is shutting down and enough is enough. I want to be free of this too. I love my family, but I can't stay.
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Rose - I can't offer any advice but I couldn't read that and not post something. I'm so sorry you're going through this - wishing you peace and comfort x
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Rose we all want peace for you. It's ok to be sick and tired of being sick and tired. You did your damnest and made it thru the holidays. We know how much strength that took. Your family will too but it will take time. Now you need to let others take care of you, give you that peace you desperately need. I hope you can find it.
Blondie. Someone is here night and day. I'm sorry you are stuck with your brain going round and round. It's a miserable feeling. I wish you peace too.
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Well I got a little sleep. Still wildly tired and wiped out. I went to use one of my last 4 drainage bottles and the damn thing is defective.. the seal is blown and the vaccuum top just fell off. Great insurance in it's infinite miserly quality refuses to send anymore then the bare minimum out. So now I have a 3 bottles to get through 4 days. Jerks this is all about money and ZERO to do with patient comfort and misery. It's like they want cancer patients to be stressed and down to the wire.. waiting for postal delivery. I resent them. They want their co-pay and not one shred of supplies to last even one day of the new year. Even though we have the same insurance.. I run out then we go to the ER at 10x the price. Their choice, not mine. I can puke just as well there. Draining helps with the nausea hugely.
My poor DH drove over an hour to get my two deaf DDs to see Zoo lights at the Portland Zoo. It took 35 minutes to take the bus from parking to the line to buy tickets. They met up with friends who bought their tickets on line, they stayed. DH was going to buy them there and found the line was over 2 hours long.. it was 30 degrees and cold and 7 at night. They bailed to much disappointment. DH said he has never seen so many people in line; it was dry and clear and I guess that's why. Still to drive over 2 hours there and back, spend 1 hour waiting for buses to get to and from parking and be willing to pay 45$ for 3 tickets and still not get in, is pretty crummy. This is the second time we tried to see these stupid lights and didn't get to.
Thank you for all your support it's been inspiring and ever so helpful. It is amazing how each in line turns to help those in front and behind, like we are refugees in cancerland trying to aid each other in making it to shore.
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Rose, YES! You made it through the holidays, and who gives a damn about being graceful?!? Of course, for your sake, I wish you had been and would be more comfortable. N&V is a rough road. Ascites can be a bugger (putting it lightly, huh?) and knowing that it's likely caused by highly active cancer and lymphatic blockage is something you just can't avoid. Plus, I think you are living proof of end of life care wisdom regarding the harm that can result from taking in fluids when your body is changing. I wonder if you will feel more comfortable with no more intake. I've read about and seen in those for whom I've cared the relief--on so many levels--that can occur with stopping intake. Some people can suck on ice or lightly flavored popsicle pieces or ginger just for the taste, coolness, and dry mouth relief before spitting them out, but others cannot even stand that (nausea, for example). You can also use sponge swabs with citrus or other flavored gel to keep your mouth more comfortable.
Whatever brings you the most attainable peace and comfort is important now. You're right: enough is enough. That's not selfish. You have already demonstrated deep love for your family by trying so hard. You will still be deeply loving them as you make the choices that are right for you. It's not an either/or. It's a both/and. It may not feel that way sometimes, but it's true: you can do both. Thinking of you, hoping for peace & comfort, in lovingkindness always....
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I often don't have the energy to explore other topics in this forum, and I missed seeing the notice about Dunesleeper's death. I've thought of her from time to time, especially wondering whether she found a sense of peace as she contemplated what death might be like for her--something she had mentioned to us. I noticed that she'd quit posting here, and I hoped that she did not find this topic more unsettling than helpful. I went back to find her last post, which was right around the time Calico wrote her "Night, night...see you tomorrow" post, the last one Calico shared with us. I am sorrowful thinking of them but also so grateful that I got to know them through this thread, where each allowed her unique voice to be heard.
In one of Dunesleeper's last posts, she wrote: "Calico, you are so funny. However, I bet it really is hard to write your celebration of life. I've had a boring life too. The only part of it that I found interesting was riding motorcycles. I will be having a Mass because that is what will give my mother the greatest comfort. Nevertheless, I should pick out some hymns I like and prayer for the prayer card. Hi Blondie. I hope you had a good day."
At the time her comment made me wonder about how we judge our lives and also recall an essay I'd read, about how "ordinary" lives may still be extraordinary and how important it is to remember that. I know Dunesleeper had a strong presence here at BCO and I hope she knew that she was respected and cared for. I remain hopeful she had no significant anxiety or discomfort as she neared death and when she died, that she died in peace.
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To respond to your wondering about Dune/Charlene's last moment, Brenda (love your reflective posts, by the way), I am speculating that something sudden and unexpected, such as stroke like attacks, happened to her. Dune's last post was on the bone thread on 12/8, offering an advice to a fellow member, in which she only mentioned her coughing, no hint of hospice. About two weeks later, a few days ago, LindaE found out from Dune's niece that she was in hospice, awake, talking, but her speeches made little sense. Then she died at the night of Christmas day. Just in about two weeks after that something happened suddenly.
Rosevalley, I am saddened by your suffering. So very sorry for your pains. The desire to slip away is heartbreaking. For wanting to live, to be present, to be conscious of the world, is the natural human instinct that fundamentally drives life. The sufferings have to be crushingly unbearable that the fundamental force of life, the desire to live, would give way to the desire to die. In my own shoes, I wish you have more options. It's so painful even just reading your posts. Rosevalley, I am so sorry that all I could do is wishing you a better day today...But hey, how about seeing 2016?!
Blodie, Skylotus, Hortense, M360, wish you also have a better day today!
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(((Rosevalley)))
No ideas, just pure love today, Stephanie
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Rose, nausea is my nightmare so I can't imagine how bad you feel. You made it through Christmas, just as you wished. If you wish to let go that is your right. Absolutely your right. Will your family support you in that decision? If it's your wish all of us here will support you unconditionally. If you stop trying to eat or drink would your vomiting stop? I second what Brenda suggested.
I'm not good with words so this may not come out right but your posts are full of suffering -- it could be considered necessary if there is something you wish to accomplish, but if not, I for one wish you the utmost of peace.
Pam
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(((rosevalley))) thinking of you. Wishing you comfort and peace
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Rose...I'm right there beside the others, feeling your suffering, wishing there was some miracle...which feels just stupid on days we're mourning Freebird & Dune. Seriously, if the world could read your posts...and those of all our sisters suffering so, something would HAVE TO HAPPEN to end this disease. As helpless as I feel, and I don't have the beautiful, thoughtful, enlightened words of so many dear sisters, I am glad for each one of you that shares this journey honestly, because in my pea brain, I know when my time comes, the words of those who left this life before me will comfort me & I know you'll hold our hands as we find rest. I just love you all...
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Rose. Hoping today is better. Rest well and don't feel guilty. It's time to focus on you. If you haven't written letters to your family, now would be a good time. I remember you have most things thought out but can't remember details. Sorry.
I did hear of one who had gotten cards for all the milestones to come. She had written in them and they were saved. I think it's a cool idea.
Hope I'm not overstepping... Just remember we are here to support you in whatever you want and you can change your mind many times and we will still support you. It truly is about you on this thread. I know it's hard to have that at home.
Peace
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Hello to all,
I apologize for being off line for the past week. My surgery went well and I feel much better without the implant in. My shoulder blade pain is still there though and that is driving me crazy. All scans of my torso and neck were clear so maybe its just radiation damage. I look forward to having the drain removed because it hurts, itches, and has slowed to almost nothing.
Rose, I cannot even begin to imagine what you are going through. All of you suffering this way have to be the bravest women I have ever known. Honestly, I would not be able to go through that. I am terrified to vomit, always have been, and I would have given up weeks ago. I hope all of you can somehow find some relief and peace. There has to be something that can stop the vomiting and nausea. If this is what I have to look forward to, then I am moving to Oregon and killing myself before it gets that bad. No one should have to suffer like that. We have all suffered enough already. Where is the fairness?
You all are in my prayers. I am going to pray that God brings you all peace and an end to your suffering. Much love and gentle hugs to you all.
Barb
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I pray for grace to be able to face my passing as strongly as all of our lovely women here. As a nurse I saw many people pass away. When it came time, none were scared. They were all already somewhere else, wherever else their beliefs took them and just quietly slipped away. Peace and love to all. You all give me such strength....helping others even as you are in such pain. Brenda E
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Well I didn't puke yesterday.. all puked out from the 24th and 26th which was the day from hell. Seriously waves unrelenting.. nothing stayed down - zofran and buckets..ugh. DH thinks this is all chemo Doxil. But I looked at the Doxil site and jeez no one talks about barfing for hours...when you got the drug the 17th. Then this morning I felt ok drank a little chicken soup.. might be a mistake.. not feeling great. So we will see. So very tired. I drained off over a liter.. Still waiting for release of the Pleurx bottles because they swear they have no order. The gal at the company will send a replacement bottle for the defective one that had no seal and hung off th container. Yay cause they charge 158.98 each kit. I was grateful and happy about that.
My big toenail which had a fungus on it just fell off today.. my feet and hands are pink and red. The toenail falling off is gross. I can't decide now if all this unending misery is Doxil or bowel obstruction? WTH? Life in cancerland just one big mystery. OY I am waiting to hear from advice nurse to decide which is which.
Keemom I am so glad you are better and feel better after your surgery. Thank you for all the sweet PMs of concern and support. Ya'll rock to quote "Patty." Thank you.
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Rosevalley,
I lost a couple of toenails on Doxil, and my nails are still screwed up three months after quitting the drug. Yep, it's completely gross and it sounds like Doxil may be to blame for that one. Also, the red hands and feet are a Doxil side effect. Keep lots of lotion on those! I also put my feet on ice packs to cool them down. Or frozen peas in a pinch. With socks of course! Doxil might be contributing to the vomiting but I didn't experience much of that. Still I didn't have much of an appetite. I'm so sorry that you've been feeling so nauseous, especially with all the tempting holiday treats. Lousy cancer, lousy chemo! I hope that nurse can offer you some insight. Sending much love...
Rose.
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Heard from the advice nurse... the toenails are doxil and the red hands and feet. She never heard of N/V lasting from the 17th until now. I also tossed 3 times this afternoon.. again. So it's the partial blockage..ugh. My instructions are to go to the ER. It's an hour drive. I won't go to the one 15 minutes up the street. I don't want to go at all.. ugh.. That nasty owie NG..
My DD1 has oral surgery tomorrow. DH is supposed to go with her as I don't have the energy and might begin a puke fest with no notice. So I will surf tonight and go in tomorrow. Why can't I see an on call MD tomorrow why torture me with hours in the ER? I called this morning and just heard back after 5 pm. I dutifully waited until after the Christmas holiday. My MD is on vacation. The advice nurse is right about the zippo nutrition and fluids being insufficient for kidneys etc.. although my labs have been good. Amazing what the body can cope with. My last normal meal with solids was December 11th and it's the 28th of December. All these plates of goodies from friends and folks.. sigh can't touch them. I'll call tomorrow try to bypass the ER. Wish me luck.
Anyone heard from Horetense, Sky or M360? Peace to you all.
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Rose, Honestly?!? You were given advice to go to the ER?!? I think that's just woefully, horribly, disrespectfully, pitifully, outrageously inept advice. And that's just the words I am willing to say publicly. I thought one of the goals of palliative care is to provide care holistically, which means helping you to avoid "the torture of hours in the ED," and another is to obtain more palliative focused care instead of acute, urgent care. You and I think alike: you should be seen by one of the PC program's MDs tomorrow. Are you considering calling again tomorrow morning and asking whether you can be seen by one of the MDs rather than go to the ER?
Okay, I'm a little calmer now. I wonder if you are clear about your goals for care at this time of your life. Are you focused on symptom control and comfort? If so, might you receive more appropriate and timely care if you were to enroll in a hospice program? Do you feel conflicted about deciding "enough is enough" versus doing everything (or almost everything) possible to extend your life? Tough questions, I am sure. Forgive me, if you experience my comments and questions to be too blunt, then tell me not to go down that road, and I won't again. You've always been blunt but I don't want to presume that's what you need in return. I'm concerned about you, as we all are, and continue to hold hope for peace, comfort to the degree possible, timely and appropriate care, moments of joy whenever and however you can find them. In lovingkindness, ALWAYS!
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I am rewriting my advance directives and have decided to incorporate some of the information and forms from The Good-to-Go Toolkit from Compassion and Choices. http://www.compassionandchoices.org/userfiles/G2G2015.pdf It includes a values worksheet, a dementia provision, a directive on health care institutions refusing to honor my health care choices, my particular wishes for therapies that could sustain life, a rider to residential living in an assisted living facility, hospital visitation authorization, and a letter to my PCP regarding my end of life decisions. Some of you might find sections or the whole caboodle to be helpful.
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Rosie, hugs to you sister. Hope they can help you tomorrow at the hospital. Sorry you even have to go in. I thought palliative can care well for people at home. I pray your pain goes away and you can keep something down. My heart aches for you.0 -
Bon my gallbladder got yanked when I was 41 - "fair, fat and 40" as they say. Huge stones. I waited weeks barfing and miserable because Kaiser in SACTO considered a lapchole to be elective surgery. I was working at the time and beyond miserable because they kept putting off the surgery and giving me pain meds. I finally threw a fit in the doctors office that I didn't want a dose of vicodin and I was going to assault him with the bottle- I wanted relief... CUT IT OUT schedule surgery. So they did - 4 huge stones. It was a little weird since I worked there, so I was "hi guys.." I knew they would blow me up like a beached whale and go in and snip and zip and done. Then I could go home in blissful peace from that dang gallbladder. I was so thrilled nearly danced into the operating day surgery suite.. "do it!!!" Everyone in my family has had their gallbladder out - Mom, Dad, Grandmothers, Grand Dad. Everyone has had their appendix out too, but me and my brother... everyone.
Brenda-Yes I am a little bent out of shape over it taking 5 hours to call me back and then "go to the ER." Why couldn't I see the on call doctor? Well DH has to take DD1 to her surgery tomorrow as promised and I can wait another day... I mean the 24th and 26th were worse, I was woosey and unsteady and dehydrated. But all my kids were together and damned if I was messing up Christmas break with my family. No. I would like to know just how severe this blockage is and what I am dealing with. No one can tell me that so far. We will go in tomorrow and sort it out, try and get an appointment and scope maybe. What if what I have is unrelated to breast cancer and a separate issue? Investigate, then armed with information make final decisions. Then my family will understand why.
Funny what you said Bon about when things get straightened out you can hang in longer. It's true.. I have bounced in and out of being at deaths door and muddle through in amazing fashion twice. My DH keeps saying you will be fine. (He's on the d' Nile cruise) I had an acupuncturist tell me my "life force was very strong." He checked pulses and all over. Then he happily blessed me with relief...pin cushion fashion. This obstruction deal is getting old. I really hate puking. Puking sucks. Since June I have lost 45 pounds.
Thank you Susan for the birdie hug! I have a canary about 10 years old.. tweeters. Birds are so sweet!
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Rosevalley, I am getting seriously impatient for you. I'm glad you are getting relief from acupuncture (although I'm not sure if you meant that sarcastically). I do believe acupuncture can help with the inflammation in any case. Along the lines of Bon's thinking, if not the gallbladder, could it be appendicitis? Of course, you would know more about this. Hoping for a fix already and sending comforting hugs!
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I think you sound strong too but puke fest can wear you out and lack of compassion just sets my teeth on edge. Is it possible you caught a virus? There's plenty going around here.
I know we are cancer patients but it's not always cancer like Bon says. I truly wish it's something else. Hope you can find someone to look beyond the obvious.
Speaking of obvious. Can you get anti nausea suppositories? It just occurred to me this morning.
Wishing you peace and a clean toilet bowl:)
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I never post here but have been following this thread for a long time. Zillsnot4me suggested anti-nausea suppositories, which is one way of getting meds to "stay down." I have 13 year old twins with autism and they used to barf up every med I gave them (amazing gag reflexes). So, we gave them meds through suppositories for many years. But, another possibility is to rely on compounded drugs. My daughter used to get ear infections all the time which caused her to repeatedly vomit. So, her doctor prescribed her an anti-nausea med that could be compounded into a cream. We would put the cream on her wrists where it would be absorbed through her skin.
Hoping that all who are suffering find some relief from the pain and distress.
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