A place to talk death and dying issues
Comments
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i edited my post. Hope it is more clear
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Hi, Barb,
I'm wondering what you mean when you use the word "quickly." And has your MO shared with you that you would have a "quick" decline and death once you stop chemo and the rationale for thinking that? You mention that you are very healthy otherwise, and I wonder if that would make a difference in the pace of your expected decline. I've known people who have had chemo just a week or two prior to their deaths, but their disease process itself was already gaining momentum and death was inevitable regardless of chemo status. I've also known people who stop chemo and live for months and months, at times longer.
From my perspective, you might wish to have a more in depth conversation with your MO with regard to the likely course of your illness should you stop chemo. When you have information that is as reliable as it can be, you will be in a better position to have a more open conversation with your husband. I know that my husband would want to know as much as he could in the situation you are describing, and I would want to know if the situation were reversed. But that's just us; we would make plans accordingly and not be likely to look back and say that we would have lived our lives differently if only we had known.... Is there something about your husband that suggests to you that he would or would not want to know and be as prepared as possible (bearing in mind that even MOs are notoriously poor at predicting the timeline of one's end of life)?
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Living for months and months after stopping chemo to me is not a long time. I know it is not possible to predict how long i will live after I have gone thru all the chemos. But I have read that typically the cancer advances quickly without treatment. I would love to be wrong about this
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Barb,Does your husband go to onc appointments with you? When you have the conversation that Brenda suggested, it would be helpful to have him with you. You can both get your questions answered and hear the same information.
Thinking about you
Best,
Nel
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Thanks
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Barb...I know what you're saying, my onc said the same thing. I told her about Anacortes Girl, who was here...then gone. Since then, we've lost more
I told her it was somewhat disturbing to see it go so fast & she said, "That's how this disease is. Once treatment is no longer working, time is very short." Like you....a short amount if time, I hope, will be years!!! It did make me, once again, think about things I need to do....of which I've done none!!!0 -
has anyone heard of death cafe? A place/ gathering where you can talk about death and dying...google it.
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I read a very interesting article in the NY Times (I think that's where it was) about the "death café" phenomenon. Somewhere along the way I also read a piece on how some people are so unsettled by contemplating and talking about death that other people interested in starting a "death café" are tweaking the idea to be more like "meaning of life and death cafés." At least it gets people talking and thinking and perhaps talking some more with their loved ones about their end of life wishes. I know I'd much rather deal with the awkwardness of talking to my loved ones now about my end of life wishes than risk them not knowing about those wishes and being unsure of how to help at the end of my life. Or worse, making decisions that don't reflect my wishes. Of course, advance directives are important, but just having the forms completed with no conversations with your health care agent/s (and your MDs)is really not the optimal way to approach this issue.
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- Barb...I read your post again, and I know others expressed what I'm about to say...do tell your DH, and I say that with love! My DH goes to all my appts and sometimes I think I'd rather he not. Then the appt ends, we talk, and I'm so overwhelmed at how much he gets from the meeting...sometimes a whole different perspective on topics covered, the onc view of things, etc...and I realize I'm so invested in this whole process (of course, it's my life), it's hard to think rationally or without my crazy, chemo-fueled emotions. That said, he respects my feelings & fears & helps me come to grips with them. He's also there to question my oncs decisions & methods, without that same emotion I might give off. Pertaining to end of chemo/life issues, he was so gentle and reassuring that this would be a time that we'd be prepared for. Like you, I'm pretty healthy (aside from our little monster)...unlike you, I'm on my 1st chemo...so forgive me if I'm sounding a bit cavalier. My hope is that you will continue to be strong...and wth or wtf, whatever....miracles happen too
0 - Barb...I read your post again, and I know others expressed what I'm about to say...do tell your DH, and I say that with love! My DH goes to all my appts and sometimes I think I'd rather he not. Then the appt ends, we talk, and I'm so overwhelmed at how much he gets from the meeting...sometimes a whole different perspective on topics covered, the onc view of things, etc...and I realize I'm so invested in this whole process (of course, it's my life), it's hard to think rationally or without my crazy, chemo-fueled emotions. That said, he respects my feelings & fears & helps me come to grips with them. He's also there to question my oncs decisions & methods, without that same emotion I might give off. Pertaining to end of chemo/life issues, he was so gentle and reassuring that this would be a time that we'd be prepared for. Like you, I'm pretty healthy (aside from our little monster)...unlike you, I'm on my 1st chemo...so forgive me if I'm sounding a bit cavalier. My hope is that you will continue to be strong...and wth or wtf, whatever....miracles happen too
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thanks ronniekay and everyone. I value your opinion and appreciate the support.
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Barb, have you checked into any trials? I don't know all the chemos you have tried but I've gone through quite a few in the last three years and do worry about running out of options. When I ask my onc he says I'm not ready for trials yet because I'm getting time out of the tired and true. Still, when the time comes, I hope I can qualify for a trial. Sending hugs your way.
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i have done ten chemos in three yrs and 2trials. Don't see any trials near me at his time.
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Barb, wow .... You are my new hero. I didn't realize you had done so many. Now I feel like a bit of an ass for suggesting trials. Hope I didn't offend you! I read so much on the threads and it is really hard keeping up with who I meet on which thread. We've probably done a lot of the same chemos. So sorry you haven't found one that kicks butt. Now sending bigger hugs!!
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gator gal no worries.
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barb - gentle hugs for you0 -
Hi Gator Gal, I hope I'm not being too intrusive or an asshole and u can just ignore me if i am but how come you don't take any anti-hormonals?
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Valerie, did the anti-hormonals for the first three years of my diagnosis. Nothing worked for any length of time and the neuropathy with some got so bad my onc wouldn't let me continue. I did tamoxifen and femara for years and years following my original BC in 1987. One year after they took me off was when mets appeared. I often wonder what would've happened if I had continued on the femara. My only SE was weight gain and mood swings. I could've dealt with that!! If you check my profile you can see what I did the first three years. Tried xeloda and faslodex as well. I couldn't figure out how to make all that appear on each post so just wrote a blurb.
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me too my dr. started with them and then moved to infusion....I am never doing clinical trials, I would get the fake pills....
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I would def do clinical trials if I run out of chemo protocols .... Just hoping to NOT need to. I know some folks through BCO and FB doing clinical trials and I think they're getting the real deal! And doing well! I'd be willing to take the chance if I have no other options!
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I have no idea but I bet there is info on it somewhere
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Bon, i definitely think allowing a pet into the funeral home, before guest visiting hours of course, would be the thing to do. It will be one of my requests if my little 'Kee Boy' is still here when it's my time to go.
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((((Bon)))) Thinking of you, sweet lady. I like the idea about your cat. Animals are so sensitive... they know.
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Bon--thinking of you! I also like the idea about the pets. They know. That can feel it/sense it.
I have been making small strides at attempting to put together some things I want at my service. I have gone through pictures and put them to the side. Today, I started getting music play lists in order. I really want to express my life through music and pictures. I think I will be able to express my joy, my ups and my downs, my coming of age, and my love of people, animals...I know people will be mourning, but I have to make people laugh because that's just what I do. Hope it works when the time comes.
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Your sweet cat is looking after you, Bon! And they do like to be right up by your face especially, when they sense you're not feeling well. Sometimes that purr can be pretty loud:)
Sending you love!
Rose.
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Bon,
Absolutely our pets sense when something is wrong. That is why we love them so - they can bring such comfort.
Nel
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Bon and all, a few years ago I often visited with a dear man who was dying of end stage cancer. He dearly loved his dog--truly one of the sweetest dogs I had ever met--and his dog sat or lay in vigil at his bedside. When the elderly man was very near death and in and out of awareness, the dog would sit at the bedside with his paws on the side of the bed, his head between his paws. The family was wonderful: they respected this man and dog's relationship and even took photos of the dog with the man throughout that time. This precious little dog was allowed to be with the man when and after he died. I know that it helped the bereaved family members, including the dog, deal with his death and their loss.
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Here is a very interesting story about a company, Vital Decisions, that employs social workers to have end of life planning phone calls with beneficiaries of health insurance companies. The idea is to develop a relationship over time between the social worker and ill person so that the ill person feels comfortable exploring his or her end of life wishes and having end of life conversations with MDs and other health care providers as well as family members with the goal of receiving care that meets personal wishes. Of course, there is also the goal of reducing health care costs, which is one of the reasons that the insurance companies provide info about their beneficiaries who might need the service, thus the potential for conflict of interest does exist. However, many seriously ill people aren't having these discussions with anyone, so the service might very well be helpful. I thought you all might be interested.
http://www.npr.org/blogs/health/2014/08/27/339861118/hello-may-i-help-you-plan-your-final-months
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The New York Times had a front page article this past Sunday about how, five years after the "Death Panel" flap, Medicare might be moving in the direction of allowing Doctors to charge for having end of life discussions with patients, and that ideally, there needs to be a series of discussions as one is not enough. I hope that will happen.
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Talking with family members and friends about death and dying or end of life care and funerals is hard as they do not want to discuss these matters, yet I find the subjects interesting and necessary. I am not stage IV, but I do have indolent Lymphoma which could decide to become active at any point, no matter what my BC decides to do. I'm 65 and I realize that I will probably not live until 90 as my mother did. My husband and grown children will not accept that thought and are not willing to talk with me about any of these issues, yet.
So, in the meantime, I am trying to learn what I can about health care directives, beyond the basics which I am familiar with, both for myself, as mine needs updating, and because I am helping a friend who survived cancer rewrite her's. She is single and petrified of being put into a nursing home as she ages or if she becomes sick, and being left to die there slowly and alone with no visitors as her father was - her MIL forbade visitors. Her family and trust lawyer would do exactly that to her, too. She has the funds to stay in her own home and no children to worry about, so has no inheritance issues.
Her current Health Care Directive is well written otherwise, but says nothing about her wanting to be cared for at home. I am working on words to be inserted into it, then will retype it with them, have her sign the retyped one with two witness to watch her do it, along with a notary to also sign and stamp it. That way she can sleep easily knowing her wishes will be carried out.
I have been looking for the right wording to be sure she is taken care of in her own home and have not found anything anywhere to use as guidance. There's lots of info on going into nursing homes and hospice, but none that I can find on being cared for at home. It's frustrating because I want her to have the security of knowing she is protected as she is very worried. Can anyone suggest a thread or website?
This is what I have thought of so far:
I, ...... , willfully and voluntarily make known my desire that I do not want to be put into a nursing home, assisted living facility or the like if I am unable to live independently due to accident, illness or aging. Instead, I wish to be cared for in my own home until I die. My home is to be modified and staffed for my long-term care needs as necessary for my comfort, safety and and personal care.
What should be added, included or changed?
Another friend suggested I put in the words "assisted living or the like" so that her lawyers and trustees could not wiggle around and put her in those places instead of a nursing home. Lawyers and trustees get paid for looking out for the interests of the beneficiaries of trusts, but they don't care about the people they work for the way a friend does. They like to do what is easiest for themselves. A monthly check to a nursing home is far easier than paying someone to oversee a staff and the many things involved in home care.
Me? I want to be put into a nursing home or Hospice when my care becomes a burden to my family. Our local Hospice is currently building lovely place for people to spend their last days in not far from my community.
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don't know if this helps, but it is called the 5 wishes. goes beyond what you typically you would see in a living will0
