A place to talk death and dying issues
Comments
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Seeq, nopink, Aprilgirl, NKB, thank you so much for your kind words. It means a lot to me.
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sf-cakes, my heart breaks for you and your husband as he makes end of life plans. I cannot imagine the difficulty for you that this must be. You support him and yet it is still so hard for you. I would think it takes great courage on both of your parts to follow this decision. You have been in my thoughts since I read your post. I have so much compassion for what you're going through.
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Thank you Divine, for your lovely words. ❤️
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My darling husband passed away last week and he wasn't able to take the End of Life Option meds, unfortunately. He experienced what's called 'terminal agitation', he became confused, restless, didn't know what was happening around him, didn't really know who I was the last few days. Hospice recommended we sedate him, which we did, and he was able to pass peacefully while asleep. I am sharing this with you all because it took me aback, and I'm now updating my own Advance Directive to include my wish to be sedated if I experience that agitation, too. This is apparently much more common than I realized. I'm glad he is no longer suffering but I miss him so much.
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sf-cakes, I'm so very sorry for your loss. Words really fall short at such a time but you have my deepest condolences. I am grateful for your sake that even tho your husband didn’t take the end of life meds, you feel that he was made comfortable enough with hospice care to pass peacefully in his sleep.
Hearing and reading so many different accounts of how a person passed leads me to conclude that it almost never goes how we expect it to. I haven't heard of terminal agitation before but at least hospice knew what it was and what to do.
My sympathy goes out to you, sf-cakes.
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sf-cakes, I am sorry that your dh passed away. I wish we could each choose the time place ,and way we die, but,of course that isn’t possible. It is unfortunate that your husband was not able fulfill his desire to use the end of life medication. That is really the only option to see that life ends when and how one wants. I am glad that your hospice team was there to help find a peaceful end.
I cannot imagine the grief and pain you are feeling right now. I realize that you have been caring for you husband for a while, and I know how difficult it is to be both the patient and the caregiver. You did everything you could to make the end of his life comfortable, and I am sure he felt your love with every word you said and every touch you gave.
Focus on the good times you shared. Let the memories help you through this difficult time.
I wish you peace, healing, and comfort.
Hugs and prayers from, Lynne
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sf-cakes, I am so sorry to hear of your husband’s passing. It is unfortunate that he was not able to end on his own terms but, as others have noted, you and hospice were able to give him a peaceful journey. I know it was very important for you to be there for him throughout his illness, something you achieved despite your own challenges. My thoughts and prayers are with you at this difficult time.
Hugs. Pat.
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sf-cakes, we are so very sorry for your loss. We know it is a very difficult time, but please know we are thinking of you and surrounding you with lots of love and peaceful wishes.
Big hugs,
--The Mods
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SFcakes- I am so sorry to hear about your husband- such a loss! I am so glad you had hospice to help you and him- they are so wonderful. I am glad you have many memories and I hope support for you.
Virtual hugs and thinking of you
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sfcakes, I'm so very sorry. There are no words to heal your pain, but I'm praying for peace and comfort for you.
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sf-cakes, my heart hurts for you. I know it was known he was going to pass, but that doesn’t make it any easier. I hope you find peace. Hugs from long distance coming to you and your family.
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sf-cakes - Im very sorry to read this and that you had to manage such an unknown at the end. But manage it you did and through doing so you learned something to apply to your own situation (and helped to inform the rest of us too!). Im also sorry that you are (naturally) missing him very much, especially at this time of year. I hope you can find peace soon, and are comforted by the fact he has been released from all pain. Don't forget to take good care of yourself!
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sf-cakes - I am so sorry about your husband. There are no words I can say that will help you. Take comfort in knowing that het no longer suffers and is now at peace. Hugs to you!
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sf-cakes, I am just now reading of the passing of your husband. So sorry for your loss and I join in the hugs of others.
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sf-cakes,
Condolences on the passing of your husband. May his memory be a blessing to all who knew and loved him.
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Hello,
I feel like I'm living a nightmare. In fact I wake up most days and think this cannot be true. The oncologist frequently told me "yes, your stage 4 but we treat this as a chronic condition" that is what got me through day to day. Well, this Monday he stated "if this treatment fails you have 6 to 12 months to live. " i was unprepared to say the least. I have no desire for hospice. I was a long term care nurse for many years. I know what it looks like to die with hospice. Its ugly. So what are my options? Well those aren't pretty either. I never thought with mets to bone only i would be in this situation but here i am. My days are spent shaking, vomiting and a headache all due to stress. My nights are pretty much the same. My husband who has been a constant source of strength and love doesn't know what to say either. If anyone else is in this sinking boat please tell me how you cope.
thank you for listening
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lissalou, I’m not in your situation but I’m so sorry for what you’re experiencing and wish there were something I could say or do to help. It is a great shock to have a doctor give you that kind of news. What are your greatest needs right now? If your husband does not know how to help, would you consider telling your oncologist or her/his nurse of your difficulty coping and see if there is help available. I know it’s hard on both you and your husband.
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lisalou, I am in a very similar circumstance although my MO hasn’t discussed time. I was fortunate to have a slow growing cancer but the down side is, after becoming endocrine resistant, I am not responding to chemotherapy. We’re trying Exemestane but neither my MO nor I hold out much hope. The difference between us is that my cancer spread to my liver which is no so enlarged that it’s causing damage to my kidneys (currently in hospital).
I know how hard it is. One thing that helps me is to go one day at a time and concentrate on getting the things done that I need to do to “prepare”. In my case it’s just my 91 year old mother and I (plus Sadie my collie) so I need to take care of a lot of details. I also choose to operate under the thought that yes, my time is getting short but my QOL is still good - I’m dying but not today. (The issue of my QOL has come up a great deal with regards to the kidney issue as I had to decide if I wanted the intervention given the status of my cancer. Ultimately I said yes as I am still high functioning - don’t want to add kidney failure!) Finally, I refuse to give up. I’m exploring clinical trials and try to keep in mind that things can change quickly in cancer treatment. There are several drugs in the pipeline and, who knows, I may get access on compassionate grounds (although a bit trickier as I am in Canada).
I’m not sure if this has been at all helpful. I’m sorry you are facing this. Sending a virtual hug.
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It is a challenging position to be in, maybe not all hospices are the same but I have a friend who worked in an in-patient one, and she says it's excellent while it is a medical facility the patient gets wine with meals they have all sorts of holistic and complementary therapies for free, a family can stay around the clock with their loved one, people have their pets in with them, it all guided by what the person wants and if the person wants to go home to die they facility that, my uncle aged 91 died recently had to have the palliative care team, my cousin who is a nurse said they were amazing. I also have a cousin who is the director of a hospital and would trust her opinion about who to go to. I know hospice is a good thing, no one wants to die but my aim when the time comes is to have a pain-free comfortable death I know having the hospice involved would greatly facilitate this. I tried counseling but it did nothing for me but know it works for a lot of cancer patients.
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lissalou, on a practical note, would you look for a second opinion, if you are bone only telling you that you only have a year if the next treatment does not work, that does not seem correct, also would you look for a referral for some mental health support maybe some medication for anxiety.
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lisalou, I'm sorry you're here and having to deal with this. It's frightening to be told you are Stage IV. You consult Dr. Google, and he convinces you to put a rush order on your coffin. I had those same feelings, but as I look around, I see women who have lived "long" past the life expectancy charts. They're just statistics and none of us is a statistic.
It's hard to know what to do when people (not us, of course) are telling you what to do, what to eat or not eat, and how GREAT you look when you feel like crap. I think you'll find the Stage IV threads comforting, even if that sounds strange. I won't tell you to "be strong" or "you've got this" or any other advice like that. Just know that the ladies (and a few gents) here are very supportive.
If you'd like, take a look at my blog. It is about living with Stage IV breast cancer, but it's not morbid or Debbie-Downer. In case the link in my bio doesn't work, here it is:
Take a look at the posts from the beginning. Maybe they'll help. If they don't, don't feel bad if you don't want to read them. They don't resonate with everyone.
(((hugs)))
Carol
Edited to add, the link may not work, due to BCO Guidelines. You can type it in, or PM me. Mods, please let me know if I'm violating any rules.
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This is Chuck, husband of Susan. I'm sorry if I am breaking etiquette by using her account, but one of her wishes was to notify the breastcancer.org boards of her passing.
Susan passed away peacefully this morning with her family at her side. She was grateful for the support of this community.
(Edited by Mods to remove last names from the post. We strongly recommend not posting personally identifiable information on a public forum, for your own privacy and security.)
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Oh, Chuck, I'm so very sorry. I wish you comfort and peace as you mourn her loss. Thank you for letting us know.
Warmly,
Carol
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Chuck,
I am so sorry to read this! She will be missed, a lovely person and so knowledgeable and brave. I am glad that the end was peaceful and surrounded by family. Hugs and serenity to you and the kids. thank you for letting us know.
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Chuck, I am so very sorry for your loss. Susan was such a special member of bco.org and I will miss her terribly. She had a wonderful online presence, a woman who was very knowledgeable and always kind to every single one of us. And she was always a supportive voice. It is difficult to learn of another member’s passing but I think I can speak for most everyone here by saying we are appreciative to be told the news, even tho it’s hard to hear, rather than wonder was has become of someone who no longer posts. It helps to know her passing was peaceful and that her family was with her during that time. You and all of Susan’s family and other loved ones have my deepest condolences. Sending many hugs your way.
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Chuck: I m so sorry and saddened to hear that Susan has passed. She was a wonderful, joyful presence on the BCO.
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My condolences on your loss. May her memory be a blessing to all who knew and loved her.
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Chuck ,My sincere condolences to you and your family. May your wonderful memories of Susan carry you through this difficult time.
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Chuck, my most sincerest condolences on Susan's passing. I pray for peace and comfort for you and your family.
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Hi Chuck,
Thank you for letting us know of Susan's passing. We are so sorry to hear this, but glad that she passed peacefully and we could provide a supportive community for her. Let us know if you need assistance finding resources as you and your family process this. You can e-mail us at community@breastcancer.org.
Sincerely,
The Mods0
