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Stage 4 Thoughts from a daughter who lost her Mom.

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Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
Printed Date: Mar 23 2019 at 7:15am
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Topic: Stage 4 Thoughts from a daughter who lost her Mom.
Posted By: rmichaels
Subject: Stage 4 Thoughts from a daughter who lost her Mom.
Date Posted: Nov 02 2016 at 1:15am
Hi All,
Well it's been almost 4 years since I lost my mother to TNBC (at age 60) and this forum/support group was very helpful.  I do return to this site to read others journey's and stay up to date on the clinical findings, charity events, etc.  

My Mom's cancer journey was only about 15 months and I do have some thoughts that might help your family.  I still feel very strongly about what you do now will help us family members later. While you are feeling good do what you can with your family, take pictures, talk about your wishes....

After Mom passed I needed major counseling and suffered something similar Post Traumatic Stress Disorder (PTSD).  I'm fine now but I have made huge changes in my life, for the better. For our family having Mom do hospice at home was not the right answer at all.  My parents were married for 42 years and raised us kids in the family home my dad still lives in today.  We turned the formal living room into Mom's hospice room for the last 3 weeks of her life and myself, my aunt (her sister) and my dad did all the care giving.  This was very difficult and without my medical background would have been almost impossible. A hospice RN comes once a week and after that you are on your own.  You do not realize the care needed or the toll this will take on your family.  I highly recommend going to a hospital or a facility so staff can do this and your family can focus on the good vs. the medical complexities of passing away. (If you need more details please email me).   

Here is my post from Dec 2012 called "things to remember":
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 bounce 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...but not the people around us - or we are too afraid to talk to them about passing away because its painful.  It's MORE painful now to be left wondering instead of having the memory of the conversation.  Her memory lives on and I'm committed to helping those around me with this journey - you aren't alone and many battle with you each day.  I now have many friends who are 3,5,7, year survivors of this crappy cancer and I have helped them think about what messages & meanings they would like to leave behind.  Every day is a gift and tomorrow isn't a sure thing for ANY of us.   Love & Light. xo rachel.

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: 123Donna
Date Posted: Nov 02 2016 at 8:01pm
Hi Rachel,

I remember when you joined this group and your loving devotion to your mother.  I'm so glad you've come back and given us an update and also some wise words of advice, even if one is not facing a serious illness.  My dad had a long illness with COPD and was on hospice.  He was always the type of person who wanted to be in control and have everything thought out.  When he passed, my mom gave me a folder where he had all of his funeral plans written out, even the songs to be played at the service.  The only things mom and I had to do was the obit announcement and flowers.  I can't tell you how relieved that we didn't have to think what he would want, because he had it all spelled out and we knew we were giving him the funeral he wanted.  All through my life he would leave notes for me and his grandsons.  Usually it was an article he cut out of the newspaper with comments on it.  I've found so many envelopes with little notes, old family photos where he talked about the picture, pictures and momentos of his time in the war (Korea) with messages to the grandsons.  I'll find them in a drawer or box, in his handwriting and I just treasure them. 

When I was diagnosed, I put all my digital accounts and passwords in a book where my husband and sons knew where it was located in case they had to access something online.  I've heard stories like yours where family members couldn't get into a phone, FB account, online payment, etc.  The other thing I started was a "journal" type word document with things I wanted to say to my sons.  I'm so glad you are spreading the word about leaving messages for loved ones.  You are an amazing woman and so kind to reach out and help others.  I'm sure your mother would be so proud.  You're probably much like her in many ways.


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: nslay
Date Posted: Apr 29 2017 at 9:21pm
Thank you for sharing your thoughts about what we may be able to do for ourselves and our families during our journey with metastatic breast cancer. I was just diagnosed with metastatic cancer after seemingly beating triple negative breast cancer with a diagnosis in 5/2/2015. I am thinking about how I may want to spend my time and live my life as I go forward, not knowing if my time will be shorter or longer.

I appreciate your insights and want you to know that what you have said resonates with me as I have been thinking about going to visit my various family members around the country whom I haven't seen for a while and reconnecting with each of them. Your thoughts are encouraging me to continue thinking of ways I can build on my relationships with family and friends and put my focus there.

Having lost my father when I was 18, I understand what you are saying about wishing some conversations had taken place before his death. I don't want my friends and family to have those regrets.

Thanks too for reminding me that I am not alone.

Posted By: bingerso
Date Posted: Aug 08 2017 at 12:25am
Hi Rachel,

It's been a while since I've been here. This site was a great help to me/us 8 years ago when my wife was first diagnosed w/tnbc. I found my way back here today - after losing her to this disease 3 weeks ago - 3 weeks shy of our 40th anniversary, like your mother, at the age of 60. Your story struck a chord on many fronts and I thought I would share some thoughts from my perspective.

Unlike your mother, Lorenda fought this disease for more than 8 years. Long story short, the last 3 years were almost constant treatment for stage IV tnbc. Even though we were pretty sure her clock was ticking fast, we did not expect things to go so quickly. She developed brain mets - had whole brain radiation and almost immediately afterwards came down with pneumonia, which her heart, damaged by previous chemo, couldn't handle. She passed away just a day after entering the hospital.

We DID have time to talk about "the end" - planning to get into hospice earlier rather than later and with Lorenda very clear that she did NOT want to die at home - for exactly the reasons you talk about. I did know some things she wanted - cremation, what church/pastor, cemetery etc. which DID help a lot, but many of the details we planned to get ready were left undone at the end. Her last couple of months were so intense with treatment and pain/stamina issues that it was difficult/impossible to find the energy to talk about some of these things we both intended to . . .

A couple of days after she passed, I found 2 journals that I did not know about, which included some real insights into her thoughts and beliefs over the past 3 years (she had not worked since 2014) including a "goodbye" letter to our daughter that she wrote almost 18 months ago! I will say, I wish she had been able to talk to me about some of these things, but at least we have the written version to hold on to.

I have had a houseful of family here since her death - I'm really unsure about what my life is going to be like when it empties out in a couple of days. For 40 years, every decision I've made has considered her thoughts/feelings . . . Not sure when it will feel right to empty drawers/closets etc. At times I think I can move forward, then it seems impossible. Will be leaning on friends and family heavily in these coming days/weeks/months.

So - as Rachel has reminded us, "tomorrow isn't a sure thing for ANY of us." Live with grace, talk about the things that matter, and love unconditionally.


Husband of Lorenda
New dx -8/14.
1.6 cm tumor-new primary L breast
bi-mx, recon
nodes 16/16 +
BRCA1/2 -
chemo- TBD
rad - TBD

6/09 dx stage 1, gr3
lumpectomy, DD ACx4,Taxol x8/12 rad x33

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