A place to talk death and dying issues
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Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
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Hospice question: I assume a hospice center includes meals like a nursing home does. I have food allergies. Anyone know if hospice places take things like that into account when feeding people?
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dodgersgirl, you would think they would have to take that into account. The last thing they'd want to do is send someone who is on "comfort care" into anaphylactic shock, right? What about someone who is Jewish? Are they going to serve them pork? They'd better not!
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sunshine—- agreed. When my dad was recovering from hip replacement surgery at a place like a nursing home, it seemed like many days the meals all had cheese in them. And I am allergic to cheese so that got me wondering about meals in hospice
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How do you know if it's time to go to the hospital?
In the last year I have been through four failed treatment therapies and 3+ months of no treatment at all. My CT scans are worse, blood draws are worse, an CA tests are topping the charts. I've had three paraicentesis draws this year alone and the fluid is now building up very quickly.
I have little muscle tissue and I've become so thin the doc won't prescribe fulvestrant because it has to be injected into a butt I don't have. Currently waiting on approval for Piqray which I don't expect to see for another couple of weeks.
I don't know how much I might deteriorate during those weeks, even now I can hardly stand up for more than a few seconds and can't do anything in the house including my own laundry.
I really feel like I'm spiraling downhill fast. I hoped to make it to my 70th birthday in June but I don't know how I'm going to make it that far and I'm not sure that a visit to the hospital ER will do me any good anyway.
Any advice or pointers for me? I'm not sure I'd recognize an emergency if I saw one.
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pnw, I'm so sorry for what you're dealing with. I was wondering if you have access to palliative or hospice care. It sounds like you are at a point where you could use some daily assistance and support from their services.
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My experience going to ER is that they deal with a specific, possibly acute, defined problem. Then you're sent to a specialist. I think divine said it right, call MO &inquire about palliative care to get help.
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pnw, I'm so sorry! Are you living alone. I agree with divine that contacting palliative or hospice care might be a good choice. You should not be having to make these decisions alone.
gentle hugs,
Carol
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pnw, I am sorry that it’s come to this point but wish you peace and comfort. I agree with what others have posted re: palliative or hospice care.
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I'm not alone, husband is also here.
I did contact palliative care at my medical center and frankly they were a joke. Two social workers who told me upon questioning that their division "Supported wellness". They then proceeded to bomb my cell phone, mychart, and email with wellness messages that couldn't be replied to. Less than worthless, they became e-pests.
Anyway I made through one more day.
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pnw, so sorry to hear about the gawd awful palliative care! It sounds like toxic positivity and completely inappropriate. Obviously, those who created the program along with those who carry it out have no true insight into what a person with terminal illness may be experiencing. And all the technology these people employ, to me it seems like they are the equivalent of pencil pushers back in the day; just sit at a desk and press “group send" to spew worthless spam into email boxes and cell phones. No real interaction with patients required, no effort made to actually connect with people on a personal level, so the palliative care workers don't have to grapple with the reality of the dying. It makes me both sad and angry. I wish there were more I could do for you.
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pnw, that's unbelievable. I'm so sorry!
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I am furious for you. That cancer center is way behind on today's definition of palliative care. So sorry this is what you encountered. I would want to call the center and speak to someone higher up, or MO and say that clearly they felt I was a hospice patient and just didn't know how to present that to a cancer patient......so they're in the wrong business! 😠
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I am so sorry to hear that the social workers in palliative care were so unhelpful, pnw. Do they have nurse advocates at the place where you receive treatment? I'm trying to think of alternatives since the social workers failed to adequately assist at all. Another thought I had was the possibility for seeking palliative care outside of the hospital setting you're at. Outpatient palliative care options are becoming increasingly available, but it does depend on where you are.
This organization has a directory for hospice and palliative care in the state of Washington: https://wshpco.org/directory-search/
Perhaps your husband or another family member can take the time of reaching out to some of these. It's extremely frustrating and angering that one is put in the position to have to advocate for oneself, and spend time/energy looking at alternatives in your position.
Sincerely,
The Mods0 -
pnw,
I posted a message about a new test on the "Travera" thread and thought of you and your situation. This test is based on a fresh biopsy and is used to identify drugs that would be effective against a tumor. The test is geared for persons who have current progression and need to identify a new treatment. If you go to the Travera website you will see how to contact the company. My thoughts and prayers are with you.
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Pnw, thinking of you and sending you love and virtual hugs.
My husband and I had a similar experience with palliative care, when my husband got a little teary after the doctor asked how he was feeling, she immediately switched into the toxic positivity bs, "you have to think happy thoughts!" We never met with them again. Hospice, on the other hand, was wonderful, and greatly helped both of us at the end of my husband's life.
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At my first appointment with palliative care I thought the nurse was a ditz. She told me, “Our job is to smother you with love!” I found that really annoying. Especially since she really didn’t do anything at the meeting. But the doctor was wonderful. Straightforward and practical. Gave me some practical advice and meds. And made herself available for the
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sf-cakes and akj, wow - just wow. I hope that when I need palliative care it's a little more compassionate. Think happy thoughts??? Sheesh!
I did read a really good book (for me) called, "That Good Night." It's written by a palliative care physician, Sunita Puri. You might enjoy it. I like the way she tells her story - even with some of the tough parts.
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Thought I'd post that not all areas have or understand the difference between pallative care and hospice care. I requested pallative care from the np at my GP's office. One week later we had a visit from a nurse that wanted us to sign papers that stipulated we would no longer seek treatments/ approach. This nurse was from Hospice. The MO later informed me that pallative care does not exist in this area. I would have thought with the number of elderly in Florida it certainly would exist. So my husband and I are doing all the advocating for me and using the GP and MO for our questions and concerns.
I'm just starting my journey with MBC and realize that the cancer has really bombarded my lungs and bones whilst I thought it was just plain ole MS. I spent a great deal of time reading on this thread. I found the most impactful post from Stephanie back in 2017, saying words to the effect of thank you for reading this to those of you from the future. It really showed a spotlight on all the love and reality of living and dying with BC. Your vulnerabilities and speaking to the truth have made my fears lessen. My hope its to find the grace to hold steady as my time comes. I thank you and wish all peace and a painless day as possible.
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new on this thread. I too recommend the book Sunshine mentioned, That Good Night. Fortunately my daughter is in the medical field and said we have good palliative care here. The above stories are hard to understand in this day.
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This week I signed the papers to enter hospice. Since I've had stage 4 cancer from the beginning, I've been a palliative care patient. I don't know how much better or worse that is from being a patient with some hope of a cure, but I did notice that support, outside of reluctant prescriptions for painkillers, was very much lacking. The social workers were good at working up a few tears and giving the generic advice everyone gives. Plus some bad advice they should not have given (Like don't apply for disability, you won't qualify. I did, and I was able to quit my stressful job and have some income to live on.)
I felt a bit abandoned by my MO when I told her I didn't think my body could stand more treatments. But I shouldn't have. She is there to prescribe chemos, and that's her whole job for a huge caseload of patients. So when I said no more treatments and asked for hospice, my MO agreed. She didn't give me a date for the end. I just know it's less than six months.
From the first contact, the hospice has been wonderful. They got me a variety of meds delivered. Including dexamethasone. I didn't know it could impact the extreme muscle and bone pain in my right arm. I just thought of it as a premed for chemos. They sent me some morphine and the visiting nurse showed me how to use it and what I can use it with (lorazepam and tylenol - still not as good as the steroid.)
The next day they delivered a shower chair, because I had been dizzy in the shower. And they'll be sending a nurse out once a week, unless I call and say I'm doing alright. They are available by phone 24/7.
It's a shame we have to get too sick to treat in order to have this kind of support, but I'm very glad to have it.
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@ninetwelve, my heart hurts for you. I’m so thankful that hospice has been wonderful for you. It’s so hard to move to this stage, but it sounds like you have a loving and caring team to help you. I’ve read a couple of books recently. One was by a palliative care physician and the other was by a hospice nurse. Both were good. I think I found more comfort in the book by the hospice nurse, but I don’t know why. The second one was by a nurse named Hadley Vlahos. I think I felt like it gave me hope that I won’t be abandoned at the end.
I wish you peaceful and pain free days.
Carol
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We are sending you gentle hugs @ninetwelve. Please feel embraced by all of us here.
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Ninetwelve, it is such a hard decision, and I wish you didn't have to make it. I am glad to hear that hospice so far is treating you very well - my husband and I had a similar experience with hospice being kind of angelic, and actually helping with what we needed help with. Sending you love and support, please feel free to share anything about how you're doing when you're up for it.
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@ninetwelve I hope that you have a great support system from family, friends and hospice. Please know that I care, we all care here. You've certainly endured years of treatments and I imagine how weary that has become. Wishing you peace and love.
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Thank you Carol, sfcakes and irishlove for the warm and caring comments. It wasn't hard to make the decision. I watched my parents and sister die of lingering illnesses in the last 7 years. I knew that when treatment became unbearable for me, I wanted a more intentional end of life than they had: helpless in the hands of others, without sufficient notice to contact friends or say the important things that they would have wanted to say.
Instead of actively treating the cancer I cannot beat, I am actively focusing on getting affairs in order, becoming a more authentic and kinder person, learning to accept love and care from others and just staying in the moment with a grateful heart.
My survival goal is to still be here at the end of March for my brother's wedding. I will be posting here and I want to thank this community for all the times it has been there for me and for others and for all I have learned.
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ninetwelve-I respect your decision and hope you will be able to live a good quality of life for many months. If you don't mind my asking, do you have a partner? I am single and am concerned about hospice. I don't know how it will work for me. I had a male friend who died a few years ago. He spent only two weeks in hospice since he waited so long to make the decision. He was able to stay at home by enlisting friends to commit to being there 24/7. I'd appreciate it if you continue to share your experiences with hospice. Thank you.
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ninetwelve, I’m so sorry that you’ve reached the point of entering hospice, tho grateful that they are there to offer the kind of help and support you are in need of. It is comforting to know they are good at what they do. You are in my thoughts. Sending many hugs.
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chicagoan, I am single and don't have a large support group nearby. I am lucky enough to live in my brother's in law unit, so he is nearby to help get in food, take my trash out, do my laundry. My hospice has been great so far, just a week in, at helping with referrals for services they do not provide. One thing they do that has been stellar is coordinate my medications, paying for them out of Medicare, and delivering them. They send a nurse out once a week and are available 24/7 by phone to advise when I have questions on how to take them.
divine mrs. m, thank you for the thoughts. I remember you from the beginning of my time here at BCO. You have always been so wise and kind. I hope when you need it, you will have all the support and love you need. This is a hard trip, but it's not without its rewards as we learn at last what is truly important.
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Thanks ninetwelve. So good that your brother is close by. Hope that today is a good day.
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