Talking to hospice

[Gemgardens]

Has anyone else got to the point of hospice? I’m having @ hospice come to talk to me. I’ve been so ill from Ibrance,

Ibrance. Verezinio, xeledo ("?’) and there is one more chair chair chair. Chemo to try. Has anyone else reach this point?

[nstonerocks]

Dear Gemgardens

I have not gotten as far as consulting hospice, but if I had run thru possible treatments, I would definitely make quality of life my priority. Consider the other chemo option also. Have you been able to discuss this with your doctor?Hoping you have a loved one who can sit thru this appointment with you as we don’t always take in everything when we are the patient. Please let us know how it goes. 💕

[MacroMom]

Hi Kathy; I haven't used hospice for myself but did for a parent and friend; in both cases it was incredibly helpful. My friend went on and off it a few times as it improved her quality of life to the point that she didn't need it.

That said, I just read over your past posts about Ibrance and Verzenio. You don't mention using Xeloda, have you already tried that? I ask because I also have bone and liver mets. Ibrance didn't work for me but after just one month Xeloda is knocking back the cancer marker and I don't have bad side effects at all. Let me know if you have questions about it.

Last month I did talk with my hospital's palliative care team and found that helpful too. They have a nurse who specializes in helping with side effects, and a doctor who helps with pain, along with social workers. If that is available to you it might be helpful. Wishing you wisdom and loving support as you navigate this stage.

[Hidden]

I’m sorry to hear this. I’m still tolerating Ibrance well but I visited a hospice the next town over several months ago. My sister used to volunteer there and I respect the hospice approach. I personally don’t want to die at home and have that emotional toll on my family. I’ve explained this and they’re supportive. Honestly, it was very reassuring to check it out and to know that this graceful option is available for when the time comes. Good luck. God bless you.

[Bailey3266]

I’ve been involved with hospice on 3 occasions with my dearest friend @ age 40 & an uncle and my Dad; 14; 30 & 18 years ago respectively!

I hope you can try Zelda & or other options & think palliative care may be wise to try first. It used to be a bridge to hospice (to get one & their family used to the idea; but as described above( it’s much much more; I believe it is a better step to consider as you may want blood test to see what mutations you may have which drives the decision on which treatment is likely to work and I believe immunotherapy May have trial for you! But I dunno if you’ve exhausted those options or they’re not for you.

All in all; hospice was the thing to do back in the day (it still is & then some)—very non-threatening, loving and experienced team of clinicians & docs , social workers, spiritual, Reiki, massage and other things incorporated for comfort care, pain management is thorough and they’re well-informed as well, & of course volunteers.

They now in addition to Hospice-Home Care by VNA in your own hone or if to ease burden on family a “hospice house” (typically run by or affiliated with home care hospice and/or local hospital, then last choice may be combination of one or both of the above combined with perhaps private quiet hospital room. I believe!

My uncle was in a VNA Hosoitalin Boston very loving & my Dad was at home with my mom and had VNA Hosoice care—very endearing that Mom could care for him just so much; they knew when it was time to go to hospital bed and it was kind and sensitive move for our family. My friend (who wevakways referred to each other as sisters; was at hime with her husband then chose a hospice house which I believe back in the day was very sterile and militant and felt like a hospital; this particular one and u think is typical nowadays was a hospice house—my was it beautiful: it had a front porch with rockers, a garden with paths and secret garden areas with benches for solitude/privacy, listening and watching the birds, private rooms; and all kinds of services “soup to nuts”; it was sooo nice as her husband felt he needed to work and this way she was never alone. There was a kitchen and private dining room so she had a suite at first so there was a lot of cheer as she could handle that and nice for reminiscing and I think they even had a piano & other soft low key entertainment to keep your mind off things. There were puzzles, videos, board games, soft lighting not music. There were lots of privacy and also community rooms: kitchen dining , etc. The husband or children were allowed round the clock visits and could sleep ova whenever but not pressured to do so. It was the best case scenario in my mind out of the 3 examples. Though each option has its plus and minuses and can be phased out and in at any time. Very much not the feeling that one was in a hospice house more of upbeat happy spiritual community welcome feeling for both patient and loved ones. I hope this helps.

Good luck with your choices; if you haven’t already seen a social worker; that’s also be good start; maybe your depressed, discouraged (rightfully so!) and tired of all of this so you think logically I shud start hospice—but wanted to let it be known there may be other avenues—so prayers to you😴😍🐶

[nstonerocks in reply to Bailey3266]

Well said

[Julie2233]

I belong to a small mbc support group run by a local bc charity and the group arranged a trip to the local hospice for the last meeting. Unfortunately I couldn’t go due to work commitments.

Our local hospice offers a wider range of support than just end of life care and the visit was about finding out about this. I’m looking forward to hearing how the group got on at the next meeting.

[NPmary]

Suggest you join a great Facebook closed group for women with stage IV metastic breast cancer caalled:

MBC-EOL/AOL Issues Support Group

They are a great group of women: informative, loving, supportive, some in hospice, many of us are not. It's a great place to ask questions, to learn, feel support and give support when you can.

Blessings, Mary.

[TheGoodFight]

I did not do well on ibrance either I was only on it for two months things progressed numbers went up lesions got bigger now I'm on the new piqray they check to see if you have a pik3ca mutation it's supposed to inhibit the glucose receptors I believe. After the ibrance I was very upset and hopeless so I think it messes with your well-being stay strong you're in my prayers anytime you need someone to talk to I'm here. Know that God is before us in all of this.