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.
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