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
