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thoughts to remember...

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Category: TNBC Forums
Forum Name: Palliative Care: Hospice
Forum Description: A place to discuss end of life care
Printed Date: Mar 04 2021 at 1:50am
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Topic: thoughts to remember...
Posted By: rmichaels
Subject: thoughts to remember...
Date Posted: Dec 03 2012 at 11:47pm
Mom's friends have been donating money to this foundation (in lieu of flowers) and I couldn't be more thrilled. 
It's been 3 weeks now since she has passed and we are doing OK...but I miss her every minute of the day. My husband and I have pretty much moved in with my Dad (which is a sitcom waiting to happen) and we are slowing getting back to "normal" or what ever the new normal is. Thanksgiving was rough...and I don't expect Christmas to be any easier but we are trying our best.  Mom was just 60 years old - so she had so much more time live.  This cancer is so aggressive taking her life in 15 months.  She fought this all the way to the end.  We all got to be with her on her bed as she took her last breath.
Thoughts to remember....
Before my Mom started to decline in health (in only the last month) I wish we would have talked more about death. You see Mom didn't think she was going to die, she never accepted it...she though she would bouce back after the liver pain and swelling and said she was just tired. She went off Chemo the first week of Oct and was gone a month later. Hospice only visited 3 times. Mom was stage 4 for exactly a year...but there were so many things we never got to.
I wish she would of wrote me letters or notes and left them around the house for me to find...maybe made a video on her cell phone or laptop.   Making a list of computer passwords - which we never got to.  Luckily I helped Mom with her facebook page so I can access that.  I'm helping Dad clean the house because when you have been sick for a year...things tend to pile up.  I don't know what Mom wanted donated to who...what she wanted me to keep.  I found a file that said "WILL" on it but that contained all the financials but no communication to us.  I'm sure this would have been hard to write but I would love to read her words to us...the ones left behind.
It's surreal for me to know that when you pass away, you take nothing with you.  Everything is still here...tooth brush, slippers, make-up, wigs etc.  We are all here trying to put the pieces together.
I was talking to my friend who lost a spouse in a car accident.  She never got to say goodbye.  I think that this is the gift of cancer.  You can say your goodbye's, prepare your family, complete your bucket list (or at least know what's on it).  Don't take this for granted or think you'll do it later - We all get so focused on the treatments and the fight. 
xo rach

Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.

Posted By: SagePatientAdvocates
Date Posted: Dec 04 2012 at 12:33am
Dear Rach,

Your thread is extremely important. I believe we can all learn from it.

I have virtually no physical remembrances from my mother. I think there are about 1000 (and maybe I am low) times more pictures of my 15 month old grandson than my mother who lived for 46 years. And zero home movies (that I know of). Certainly the 2012 technology made it vastly different than years ago (my mother died in 1964).

I had dinner in Houston tonight with my Mother's first cousin. She has been a nurse for 48 years and I believe is the same age as I. 68. She shared with me a story of how her two first Mother and her Aunt Frances encouraged her, when she was a teenager to embark on a career in nursing and how supportive they were. My mother had never talked about it.

And then she said "your mother was one of the most beautiful women I have ever met in my life-her smile, her eyes, laugh, her wit, her soul"..on and on..she is one of the few people on the planet who remembers my mom...and her memory is as mine is. I told her that I wanted to tape her words to show my children...a reaffirmation of what I have already told them. I thought it would be nice for them to hear it from someone else.

Oh, if there was a video of her....nothing special occasion just an everyday occurrence like 
her cooking dinner and me in the kitchen and the two of us laughing...

Sometimes we don't know how special the moments are until they are no longer there.

Rach, you and I will have to do the best we can and dig into our souls for the memories and my mother died with zero money and no will and I guess you will have to let the law dictate things financially, sorry she didn't leave a will.

What I do know, Rach is that you were a marvelous daughter and you are a lovely woman. I got to know you a bit through your Mother's journey and I profoundly admire how you honored your mom's wishes and the dedication you showed her. 

The memories in your heart will have to suffice but at least you have those. My mother told me that her mom was a fantastic woman. I don't remember her at all. I was two when she died of ovarian cancer. So at least you had the 60 years of memories. Rejoice in that and at the same time we all need to heed your words. Try to memorialize the thoughts when your loved one is alive. Try to leave letters to your loved ones. Take care in distributing possessions. And on and on.

Thank you for this thread, Rach and thank you, again for sharing your mother's final journey with us.

with my love,


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

Posted By: kirby
Date Posted: Dec 04 2012 at 1:35am
Rachel and Steve. Thank you both for your posts. Rachel (my youngest daughters name too) so much of what you said resonated with me. My mother passed from ovarian cancer at age 64. I was so lucky I had the 3 1/2 years to prepare. My mother never believed she was going to die. There was so much I wished we had talked about. I have to remind myself there was a lot my mother avoided talking about. She was upbeat untilthe last week. Even then one wouldn't have ever imagined she only had that week left. She did what she could to prepare but we had no idea what kind of funereal arrangements she would have wanted amongst other thing. I think there is always stuff felt unfinished. It's been 12 years since my mothers passing. 

Know you are not alone. 


dx Feb. 2001. Age 44

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: 123Donna
Date Posted: Dec 04 2012 at 8:14am

Your post is extremely important to all of us and serves as a special reminder.  My friend has been battling Stage 4 Peritonneal Cancer for almost 2 1/2 years.  She has two young sons and I've encouraged her to start a Journal on her computer so that she can write notes or messages to her sons and husband.  Sadly, she hasn't done this nor set up a will.  I had talked to her after Elizabeth Edward's passed and how amazing that she had letters written to her children.  These are things they'll cherish forever.  

When my father was terminally ill with COPD I learned how great it was when things are planned out.  My dad always wanted to be in charge and take care of things.  He had planned his entire funeral, including the hymns.  My neighbor was the organist at his church and he talked to her about the music.  When he passed, my mother handed me a folder labeled "funeral".  Everything was written out and the only thing we had to pick out was the flowers.  He was always writing us notes.   He loved to cut out newspaper articles and would write a quick note, put it in an envelope and address it to me or my sons.  When they were little, I'd stuff the envelopes in their drawers.  Now almost 10 years after his passing, I'll come upon those envelopes.  Just seeing his handwriting brings back so many memories.  I never realized how much those little things would matter years later.

All of us should think about having an "open letter" to loved ones.  We never know how long our time on this earth will be and it's something that will mean more than gold to family.  Videos are great for capturing a person's spirit.  The digital era started just a while ago and my digital pictures are about 11 years old.  The pictures I have of my father were at the end when his health was declining.  

Just recently I had our video pictures converted to digital DVD's.  Most of the pictures were from holiday gatherings and birthdays starting out about 26 years ago when I was pregnant with my first son.  You can probably imagine the quality of these films aren't the best.  I'd encourage anyone thinking about doing this to do it now before the videos degrate further.  We were watching an old Christmas morning with my grandmother, mom and dad.  We laughed so hard watching them as they talked to each other.  Pictures are great, but movies are so much better as they capture the spirit and essence of the person.

Thank you for this post and thoughts to remember.  


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: jody
Date Posted: Dec 10 2012 at 8:52pm
To Rachel and Steve,
Wow I can not believe how important your words are.  My mother passed away SUDDENLY at the age of 46 (same age as  ur mother Steve) and I was only a teenager.  I would seriously give my right arm to have her on some type of recording....even just her voice, or a letter from her.  This is a good message for ALL of us, but not just for those of us battling cancer, everyone,  even those who are not ill...especially those with children. We should all  write letters to those we love and make videos for our kids and maybe even future grandkids.  You are right by saying the one good thing about having cancer is that usually you have time to do these things and get things in order, but anyone can be gone tomorrow... unfortunately, I learned this the hard way and have been left with absolutaly nothing and it is HEART breaking!

diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California

Posted By: majjers
Date Posted: Dec 12 2012 at 1:10pm
Wow, either I'm having an emotional day or your words are piercing my heart. I'm thinking ~ probably both! I've been battling Stage 4 metastatic disease for about 18 months.  This time last year, there was no guarantee I would see this year's holiday. But I AM - and I WILL, and I am so darn thankful for that.  It came to me a few weeks ago that while I have a DH and we have spoken some about what I want to give to whom whenever the time comes, the thought came to me that some of those things could be given this year as Christmas gifts along with a nice personal letter to the loved one that the item is going to. So I started my first letter this morning but had to stop because I am at work and tears don't mix well with debits and credits (lol). Now at lunch I have read ya'all's sweet words and know that I am on the right track. Still teary eyed, but determined more than ever to get this mission accomplished for 2012 and if I am still here next year, we'll just thank God and keep on going.
I have adopted a quote from a 5-year colon cancer survivor who was given weeks to live at diagnosis.  It impacted me a great deal ~ "I fight hard, not because I am afraid of death but because I love life."
So here's to all the life-loving people out there, whether survivors, family members, caregivers, etc. who stay in the trenches right along with the fighters every day and remind us that even though the fight is difficult, it is worth more than gold to leave our imprint in tangible and intangible ways on this world we have walked through and the people we have loved. 
May you all be blessed this Christmas season and the coming year,

dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!

Posted By: 123Donna
Date Posted: Dec 12 2012 at 7:47pm

I love that quote!  Yes, that's why we fight.  

When my dad was in declining health, he started to give away tokens (coins, rings, pocket knife, etc) to my sons mostly.  My mom would get so upset that he was giving these things away now.  I told her it brought joy to see them given to the ones he loved now while he was still here and could enjoy the moment.  

Every once in a while I start writing my "journal" on my pc.  Now I'll go long periods before I write something, but at least it's a start.  I have a little book with all my passwords.  My husband isn't much for computers, but my sons would know how to find things for him.  

Let us know if you come up with any ideas.  My phone has a video option, besides the normal camera.  I'm thinking of trying that out.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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