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Palliative Care: Hospice

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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2012 at 7:58pm

I think there is something magical about love and I witnessed such tenderness between a dad and a terminally ill daughter that I am still slowly assimilating the experience.

When I was 20 my mom died from Metastatic Breast Cancer. She was 46 and my grandfather was 65. Yes he became a dad at 19 and my grandmother was 18. After visiting the rapacious funeral director my grandfather and I went on a marathon walk. My grandfather was not a very talkative man but he turned to me, at some point, and told me something that I have never forgotten. “I know you are devastated by the loss of you mom. I know how incredibly close you were but I want to offer a prayer for you.  I pray that you never know what it is to lose a child. I believe it is the worst pain on earth. It just goes against the natural laws of nature” And then he cracked. Sobbing like I never heard him sob before. He was a full foot shorter than I and I just cradled him in my arms in the middle of the streets of Flatbush. Kissing the top of his bald head.

Today I watched this dad talk to his daughter in the gentlest, most soothing voice I have ever heard. The palliative care physicians came in and took care of her pain. I told the dad the story about my grandfather and I also added “I don’t think any of us can handle the loss of a child without permanently suffering. As a father of six, I don’t want to ever have to go there.” Actually, I have been there when my daughter was diagnosed with TNBC 8 years ago, next month. I thought I would lose her and I think I lost a part of my mind. At least, that is what it felt like.

In my opinion you find out who really loves you when you are in trouble. And one of the ultimate tests of true love is how a loved one reacts when you have a disease like incurable cancer. I have written before how my mother lost ‘friends’ she had for 25 years. Friends who disappeared when things got bad and others unexpectedly stepped up. For the year after my mother died my grandfather’s brother, my dear Uncle Jack would have dinner with me twice a week. There is an expression that “actions speak louder than words” and that is what he did. He showed me he loved me by giving me his most precious possession…his time…He didn’t make a big deal about it. He just did it. How I miss him.

In the midst of all the grief today I managed to have a short, lovely, funny conversation with this lovely woman. I know it’s hard to believe there can be laughter at a time like this but I think that is really one of the beautiful things about people. The ability to laugh, even during times of stress. I had never met her and I introduced myself and she said “are you from the ministry?” “No, I am just Steve.” “Oh My God, Steve of course”, laughing as she said thank you for everything..It was so sweet.

I feel myself starting to ramble so I think I shall stop. I really needed to get some of my thoughts out. Thank you TNBC Foundation for providing a safe forum where we can tell our stories and receive support in return and yes, love.

My love to all of you, especially those who are struggling,

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2016 at 2:31pm
I just ran across this article from NIH. It outlines how well palliative care can work to better the quality of life with someone who has other issues as well as a cancer. Hope it is helpful
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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