A place to talk death and dying issues
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Hello, I'm new to this thread but I've been reading you for a while and I find your advice very relevant. Thanks to you, I prepared my funeral so that my family would not have to take care of it and I found out about palliative care in my region.
I smiled at Terry Pratchett's quote, and ordered the book by Frank Ostaseski cited above.
Thank you for all your precious advice.
Last week we accompanied and watched over a friend who was dying following a massive brain hemorrhage. He left calmly after a week in a coma. This confronted my husband and me with this deadline which will come sooner or later and even if we are quite calm, this experience still shook us.
Thank you for Beth Nielsen Chapman's song "Sand and Water" I just discovered it and I'm listening to it over and over at the moment, so many emotions...
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hello all, esp kbl, how are you doing right now?
I’m thinking about stopping treatment and asking for hospice. I’ve had years of radiation, chemo, surgery, Ibrance, Foslodex injections, Xgeva shots and Everolimus plus now on Orserdu. I also have other problems beside stage IV cancer. Neuropathy pain, back is with herniated disks and bulging disks with sciatic nerve pain. I’m on a walker having suffered two strokes but so much rib pain I can barely shuffle along. At what point have any of you discussed your decision with your family and especially dear husbands? Because I don’t think I can do this anymore. The pain, fatigue and loss of any thing fun or productive is just getting to be too much. At this point I envy the dead.
Sharware……6 -
@sharware thank you for being honest and open about the reality of what you're experiencing now. I've talked with family about hospice and medical aid in dying, though I'm not at that point yet.
My husband, who passed away from cancer two years ago, put off hospice for a long time, and it was a relief to both of us when he agreed. They were able to manage his pain much better, and having the nurse and aides coming to our house regularly was supportive for us both. He died about 6 weeks after starting hospice.
If you're on hospice for a while and then decide you want to try another treatment, you can come off - then go back on later. I think that knowledge helped my husband to agree to it.
There's a weird pressure to "keep fighting", and I hope to allow myself to not feel guilty or like I'm "giving up" when I'm ready to stop treatment.
Sending love and support to you ❤️
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@sharware Hi. Thank you for thinking of me. I am so sorry you’re having so much pain. I am of the firm opinion that we have to take our family out of the equation when making the very hard choice to go on hospice. I took my time, which I thankfully had, to make the decision to stop treatment. I started to think about it while on Orserdu and cried some nights trying to make the decision. It took me three months to finally come to the realization that I wanted what time I had left to be quality. Having had two Enhertu infusions and being down for about ten days each time was not quality to me.
What I’m surprised about is that I will have been off treatment for six months on March 12. I’m also grateful for that. I must say I don’t feel super off treatment either, as I’m starting to have the nausea that I had when first diagnosed with it in my stomach, and I’m starting to not be able to eat much at a time. I am not wanting to take anti nausea meds during the day because I don’t want to be sleepy. Zofran constipated the checkout of me, so I’m living with it for now.
I actually went to the funeral home today and bought my cremation service. I did not want to have my husband have to do that at the time. He would have a lot of questions he wouldn’t know the answer for.I am so appreciative of hospice. My nurse here in North Carolina is great, and when I’m in Florida, she’s great too. I know I made the right decision for me, but you have to be ready.
@sf-cakes I’m so glad your husband was able to get better pain management on hospice. They are such a wonderful organization.
I don’t have medical aid in dying where I am. I would definitely think about that if I got to that point, but I just don’t have the option.
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Thanks kbl and sf-cakes….I don’t have the choice in MD for death with dignity. The politicians here are afraid to lose votes by passing the bill.
So I’ve decided to wait and see how my next PET scan goes next week. Won’t have results until 19th when I see my oncologist. Sf-cakes you make a good point. Can always change my mind depending on how I feel. Had an epidural injection which helped my back pain. Yes, keeping up the good fight is a lot of pressure.
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shareware, There is also palliative care. I was on it for over a year when things were really bad but don’t need it right now. My doctor was awesome at relieving pain and coordinating treatments from specialists at two hospitals. The same office dealt with arranging hospice so it would have been an easy transition. I’m glad the epidural helped your back pain.
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I filled out the online form at the funeral home that I want to handle my memorial service when the time comes. They followed up with a phone call to confirm receipt but the need is not urgent so we can delay further planning at this point.
With spring on the way, I’m recalling last year during this time when my hip joint deteriorated in just a matter of weeks, probably from high dose prednisone. I could not do much yard work & hired a teenager from across the street to mow our lawn.
Fortunately, I avoided a 3 month surgical waiting list by taking advantage of a cancellation. Back on my feet by mid-summer, I had a ton of unwanted plants in our “wild area” to eradicate. It’s therapeutic for me to get outside using my long handled weed puller!
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@vlnrph I’m so glad you were able to get back on your feet in the summer and will hopefully have a better spring this year.
I won’t be having any service when I die, but it is always better to be prepared. It’s good you filled out the form to be ready when, hopefully in the long distance from now, you need to set it up.3 -
@sharware @sf-cakes @vlnrph @kbl and others that have added their experiences and thoughts. It's hard to stop "fighting" when you've been preconditioned to believe that fighting is the only solution. When the subject is cancer, of course everything gets so much more complicated especially when there are spouses and children for whom you've been responsible.
I took the opposite approach and saved the energy normally spent on fighting, which freed me to travel, to experience unfamiliar situations, meet different people, and to ordain. I believe that no matter where we are in Stage IV, all of the extra energy we can find now should be used to get our estate in order (quickly, don't waste time), and then to relax our mind so as to be calm and fearless when death arrives. Let go of perceived slights, wrongs, anger, vengeance, those emotional poisons. They don't exist except for in our mind.
Keep your life very simple and quiet, with trusted people. Relaxing into a hospice, a form of palliative care, or just the home itself are all beautiful choices. I know it's easy for me to say these things since I don't have a biological family, and am a Tibetan Buddhist nun who's simply relaxing into the MBC IV experience. I hope these thoughts don't sound too 'preachy'!
So, I wish I could share with all of you how wonderful this place feels, the place where "fighting" is finished and marvelous experiences are still waiting. I commend each of you and the paths you've chosen, and I wish that all of us will have smooth transitions.
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@pemala Love your words. Still here and agree, as I’m trying to do things. Today I went fishing for a little bit with my husband and watched him catch his first striper. We are from Florida, so he was so excited. It was 12 pounds. We put it back, of course. I was totally and still am wiped out, but I’m glad I went.
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pretty amazing story, @pemala . I'm a compliant patient, but I often listen to chapters from the Dalai Lama's Advice on Dying, and I know where you are coming from.
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@pemala, @kbl, @maggie15 and all others on this thread….thanks for your wise words…I got my PET results and it shows progression of breast cancer into my liver pretty much scattered all around and too much to radiate….a liver biopsy showed ER+PR- and HER low….so doctor has suggested Xeloda. I mentioned one week on and one week off and he said okay. He wanted two weeks on and one off. He also offered Trugap with faslodex shots and I said no. I’ve already had 4 years of faslodex injections and so…..NO!
I asked how long would I live with no treatment and he said, based on his experience, about 12 months. He said I’m not in imminent organ failure. If I were having organ failure, then I’d have about 2 months to live. If I try Xeloda, it may give me 9 to 12 months PFS or longer, if it works. So….I’m going to try it. I’ll let everyone know how it goes. I’m not sure I’m strong enough, so this could be it. I’m okay with that too.
@pemala I’m glad you fulfilled a dream. Have it marked on your headstone. Here lies a very brave Tibetan Buddhist Nun! Loved by many.
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Sharon, You can try what you want to knowing that you can decide to stop at anytime. Hugs and wishes for minimal pain.
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@sharware Xeloda was not too bad for me. I did get the hand and foot and was very emotional the first month as it was trying to get into my system. I cried over everything. That settled down. I am glad you said something about how long your doc thought after stopping treatment. That gives me an idea about myself
I have been off treatment seven months on the 12th. Day by day, my eating is reverting back to when I was first diagnosed. I’m starting to have a lot of trouble after just a few bites. I can’t put anymore in. I’ve lost about five pounds since November, which isn’t too bad, but I think it’s going to start dropping a little faster now. I lost 17 pounds the first time before I found out what it was. I am grateful I put that 17 back on and a few more for the cushion. We shall see how long it takes.Please definitely keep us updated on the Xeloda.
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@kbl - how are you doing? I’m going to start my third round of Xeloda next week. I’ve got two rounds behind me and so far no side effects. One week on and one week off. I still cannot walk without a walker. Pain has become constant. I’ll keep everyone posted. It will now depend on next months scan. Fingers are crossed. I’m also on Lyrica for the nerve pain.
@maggie - how are you? I wish us all the best on our journey. xo2 -
@shareware, I’m glad that Xeloda has not caused SEs but sorry that you are still in pain. Hopefully the upcoming scans will be good. I had RFA on my previously excised thyroid that regrew like wildfire thanks to rads so my airway is more open. I see the pulmo next week for my chest CT results. Being able to breathe is good.
Peace and less pain are my wishes for everyone.
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@sharware Thank you so much for asking about me. I started hospice five months ago today, had my last treatment eight months ago this month, and here I am. The weight loss stopped because I’ve been craving sugar like crazy, so the chocolate is keeping it on. I looked that up. Could be I’m lacking some nutrient or a craving for any reason. I am giving into it because I can. 😊
I have had such a weird disease process from the very beginning, and I literally did not think I would make it this long with no treatment, but I am very appreciative most days.
There have been rough days, and in those days, to be honest, I say I’m ready. Then I have a good few days and say, okay, I guess not yet.
I take Reglan to help my food move through my system and Senna at night, and as long as I do that, the food will eventually move through. It does tend to sit high for quite a while before, and I’m learning on the bad days, it’s usually because I haven’t gone to the bathroom, so I feel like I have food from the chest down sitting in there. I think I’m getting the hang of it.
I sure would like to know others who are on hospice and still here after technically seven months off meds, since I had Enhertu eight months ago, so that would say it was still in my system for a while once I stopped.
I’m so sorry you’re having so much pain and nerve pain as well.
That is so great that the Xeloda is not causing side effects so far. The one thing about it for me was I just had to take a daily nap. The peeling got a little more intense toward the end too, but I really hope the side effects stay away for you. I’m so glad you can do the 7/7. I found that was a great dosing. I was never on 14/7.
I appreciate you, again. Thank you so much.
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hi everyone- @kbl and @maggie15 - I know we each must travel this path. Each of us will die, eventually. I ask God daily why we have to suffer so much. It seems some days God and I are at odds, I get anngry and He gives me another month of life whether I want it or not. I know that Life is precious but if I drop dead of a heart attack, I’ve asked not to be revived,. On my bad days, I envy the dead and the peace it will bring. I am ready but still holding on by my chinny chin chin, as my mom used to say. @maggie15 and @kbl - I hope to meet you in Heaven someday. You’ve been good email friends to me.
we lost my dear Starbright38 last October. She went into hospice in June 2024 after breast cancer went to her brain. I loved her and still cry over her passing. I’ll see her in Heaven. She was such a good and dear person. We became friends thru BC.org. Belief in life after death gives me comfort. If you want to see a short 6 minute YouTube called “heaven is so beautiful” by Lauren Alaina - it’s reassuring.
love and prayers for us all……Sharware xo3 -
oh, and I’ve bought my burial plot next to my parents and have almost finished paying for the headstone. I’ll be cremated and placed in a cobalt blue urn along with my cats ashes. Just don’t tell the funeral guy or gal. I’m thinking about having the words “you’re next” put on the back of my headstone. lol…..when the time comes…..eventually. As the dead poet wrote, “As you are, so once was I. As I am, so shall you be. Prepare yourself for eternity.” Or something like that. After the two stokes I’ve had, I don’t recall it exactly. It’s just the reality of life. Xo
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@sharware Your words have given me so much comfort. That is exactly how I’ve been feeling, and it validates that I am not the only one. On my bad days, I sit here and think why am I still here? Thank you for making me feel a little better for not thinking I’m crazy.
I hope to meet you too. I’m so sorry you’re grieving your friend. I’ve met so many wonderful people through this organization and am so appreciative for it.I have also bought and paid for my cremation. I waited quite a while but did not want it to fall to my husband or daughter.
What you might put on your headstone tells me you have a great sense of humor.3 -
I purchased a plot for my husband and because he was sad that I wasn’t going to be buried with him, I selected a 3 urn solution where one could be buried with him. He’s 82 and I’m 68. It’s looking like I may go before him, God forbid. I would hate my kids have to care for him after I’m gone. Everything is up in the air and I honestly don’t know what will happen. I’m trying to get everything taken care of for my husband, the 3 dogs and the 4 horses if my passing comes sooner than I expect. I keep working at warp speed to get everything done, documented and taken care of. I’m not sure why…once I’m gone it won’t matter. I just want to make sure my 3 dogs and 4 horses are taken care of . Humans tend to take prefereence over animals,. I hope not in my case.
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