A place to talk death and dying issues
Comments
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Thank you all for chiming in. Oh, what we are going through and how we have to handle what it’s doing to our lives.
Diane, I had a similar reaction to Xeloda. Everyone said it was so doable. Knocked me down. But, I was only on it 6 months.
Lita, you are enduring so much and you have such spirit. I pray to have your peace and courage.
Day by day for sure. I read a book about a woman who had pancreatic cancer. Her motto was to make plans and cancel if needed. Right now, I couldn’t tell you if I could make it out of the house tomorrow. Just never able to predict.
Hope we are all surrounded by those we love. And they can be strong for us.
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Tina, that is a scary article. I personally have no trouble dying at a hospital, if it’s easier on my family. My dad died in a hospital in Springfield MO. I was with him. He’d been in the hospital about 6 weeks. Our family had someone with him all the time, but the nurses were wonderful. I really grew to appreciate nurses from that experience. We had hospice support for my step-mom with 2 of her nieces providing the care. Again, in Springfield. Hospice was amazingly prompt and helpful in providing supplies and medications.
Lita, I too have contemplated that having a heart attack ( quick and final) would be a preferred way out.
Help us all!
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I went to the new government site that allows ratings of hospice agencies. Compared 3 in my area. Two of the 3 were around 50% for assessing pain when it became a problem. The one closest to me is 100% for that "Patients who got a timely and thorough pain assessment when pain was identified as a problem" Here's the link to site and to the best care in my area for an example. This assessment of that agency has swayed me to contact them first. THANK YOU FOR THE ARTICLE. https://www.medicare.gov/hospicecompare/#profile&t...
This reminds me of the oncologist I fired, pain was not discussed, I was doing pretty all right until one night I wasn't and was barely able to walk or breathe from acute level 9 pain. Next day I confronted his palliative nurse when I got an appt w the office, asking about preparing and warning me on the pain that could come. She said they did that as needed. Well hell. Needed before the fact is better than during or after. Frankly, I think when there are drugs for pain available and family and patient knows how to use them properly it is not too much to ask to have it there. We never know when staff does get strep throat like in the article or snowed out or has a flat tire. Family needs to be prepared for all crisis. I also don't want to be lost in a morphine laced coma and not able to find my way through the veil of life and the other side. But I believe those taking care of me will come through and help me get there.
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Have not read the article but wanted to share link. https://www.huffingtonpost.com/entry/end-of-life-d... Will read it tonight.
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My QOL has been declining more and more over the past weeks. All chemos I tried since May have failed me. After much pondering I made my decision yesterday to stop all treatments. I'm seeing my MO next Monday to advise her of my decision and to get me in a hospice facility as soon as feasible.
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Linda,
My heart goes out to you. I pray for your peace ( and for those who love you) as you move on this decision. Please keep in touch as possible.
Hugs.
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Linda, I have not interacted with you much, but have read so many of your thoughtful posts. I am so sorry for all youve been through and am thinking about you and your family.
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Linda, may you find peace with your decision.
You may be surprised at how your QOL might improve after all the toxins from Tx leave your body.
Hospice can also give you meds to really manage pain and other things.
We St IV ladies will all face your decision eventually.
Sending hugs,
L
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Linda, sending you much peace and love as you move on to hospice.
Agreeing with Lita, many people feel better as the many toxins (chemo meds) leave your body. Noni was saying how much better she felt after she stopped treatment. She went on a cruise with DH and her "brainy" DD.
Hospice did a great job of managing the pain of my loved ones.
Sending hugs,
Madelyn
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Linda-Hugs to you.
"All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But, whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties. This is why the betrayals of the body and mind that threaten to erase our character and memory remain our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one's life-to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be."
Atul Gawade "Being Mortal: Medicine and What Matters in the end.
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Hugs and prayers, Linda.
Thank you for that Nkb. Truer words I have never been spoken.
Claudia
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Nkb, wonderful quote!
L
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Indeed nice quote! Thank you for your responses ladies, they mean the world to me right now.
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Nkb- so very true.
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NKB - that is what I am saying to myself. Here it is in words. Thank you.
Linda - I hear you. Pondering the decision I will make around the 25th. Don't know yet if I will keep on trying or wait this out. Just posted this on another thread where it got so heavy w reality. I call this photo "Sister trees dancing." Just wanted to share it here.
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Lovely and peaceful picture. Thanks for sharing.
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Linda, I am sorry that the treatments are not helping. You are in my thoughts.
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I made my decision last night. I am going to use an alternative / complementary treatment. I feel it is a parachute and not an anvil. I am going to get set up with my choice of hospice. I am going to prepare with my friend the Celebration of Life ceremony she will coordinate for me when I am gone... whenever that may be. And prepare my notebook of all the end of life decisions and forms and contracts and phone contacts and lists and on and on. Then I am going to live the rest of my life comfortable and well. After basically losing my QOL this last year to two different treatments that did nothing for me except rob me of my spirit and wellness, now QOL has become a top priority for me. I feel I am in the reality of my life and not giving up and not even bargaining. I feel very comfortable with this decision. It is like a huge gift has been placed in front of me. I don't know what it will be when it is opened except a day at a time of living life again. Excited is a good word. I am excited and even grateful that I have once again been set before a choice and have sound mind and sound body (wasn't so sound a month ago, believe me) and I have the emotional and intellectual fortitude at present to do just about anything I want given the stamina.
Diane
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Bluebird, sending you much peace and love as you open your gift.
Madelyn
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Bluebird, hope med mj is part of your new tx. It helps tremendously.
L
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Linda—i’m So sorry treatments have failed you. You will be in my thoughts and prayers as you transition to hospice. Do you have your own thread? I can start one if you would like? Just want to support you. Much love, Kristin
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Diane,
Prayers as you meet your choices with peace. Stay surrounded by love.
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Cross Posting.....
To All,
It is with a very heavy and sad heart that I tell you that LindaE54 has passed away peacefully. Her sister and I have been in contact for awhile now. She became quite ill suddenly and passed away yesterday afternoon at the hospital. I'm having a hard time with this as we just talked yesterday. She leaves behind a loving sister, niece and grand nephew who she loved very much. I will remember her kind and generous spirit.
Linda
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So sad.. and so sorry to hear this unwelcome news. Our deepest sympathies to LindaE54's family and friends and all those who loved her. Thank you, Linda, for letting us know.
The Mods
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Lindalou, I am so sorry to learn of LindaE54's passing. Your shock over the abruptness of it is understandable. My condolences to her other loved ones and family. May she rest in peace.
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So sad. But, I think from her last comments on here that she was ready. My condolences to her family and friends.
Peace.
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Bluebird, I am wishing you peace and happiness with your decision. Please know that we will be thinking of you and praying for you everyday. Please keep in touch and let me know how you are doing.
Hugs and prayers,
Claudia
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There are never really any words when you read something like that. I noticed her posting on the 9th that showed me she knew what was happening. I just don't think it's fair. No matter how many losses we go through, it's never easy, never ok. I will never forget her little icon of that little puppers. She will always be a beautiful special woman whose strength outlasted her body. I send all thoughts of strength and peace to her family. None of this cancer should still be claiming lives. We are the most advanced country. We can fly to the moon, but we can't save lives from this awful beast! I am just sickened and 😞 so sad! ~M~
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To Linda and all she has given to us.
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Lita - I live in a state where it is not legal. So I use raw hemp oil w cbd / cbda. ThoughI don't know if it is contraindicated w the alternative I chose. Have to read more.
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