Part 4: There’s more life for me to live- NEAD!
Content warning: The following article mentions details surrounding the author’s experiences with self-harm, which may be upsetting for some readers. Please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.
I reached out to a Facebook group for people diagnosed with MBC and a breast cancer website chat/blog site of those who had brain lesions. I felt like the love just kept pouring in. I knew without a doubt people cared about me and that helped keep my spirits up. These are the things that worked for me. November 15, 2018 I turned 50. November 18 my middle daughter almost had a successful suicide attempt. She was in ICU 3 days before she woke up. She has a little boy that I took care of during that time. On November 27th I got the news that my scans had come back NEAD. No Evidence of Active Disease. I was amazed and dumbfounded. I knew that it was improving, but I was absolutely not expecting the news to be that good. It took a while to sink in. Everyone else saw it as a cure. Few people really understand why I still do treatment every 3 weeks. They don't get why I have so much fatigue. I don't complain much, because it doesn't help me stay positive.
I don't like labels, like a survivor, warrior or even Metavivor. I am just a person who has lived through a lot of trauma from treatment, is still getting treatment, breathing and living the best I can.
I have a lot of days all I can do is sleep. I am grateful for each moment. I have chronic pain from 3 herniated discs, arthritis in most of my joints, and fatigue from the treatment that physically I can't do much. I do what I can to stay active, eat a little better than before, and I am currently learning Spanish, French and German on an app. It is something I can do that takes almost no effort. It makes me happy. I have really good days too. I go on trips with my sweetheart, I play with my grandson and I try not to overdo it. So on trips, I sleep as much as I can and limit my activities. I also limit the time I have with my grandson, so I have more time with him in the long run.
Loving my family & living life to the fullest
It is very frustrating to not be able to work. I recently was thinking about applying to jobs. I have been helping a friend with a project, but I am going to have to bow out. I was enjoying it a lot. I can't just help them and sleep. That is not how I want to live while I am alive. I want to spend whatever time I have left loving my family and living to the fullest I can. I want to be of service in some way, so I hope this has been helpful to someone. I am currently working on a meditation book based on spiritual principles. I hope it is helpful to others when I am done.
Caregivers: Do you practice self-care?