skspooky Posted September 22, 2015 Posted September 22, 2015 Hello, So happy to have found this sight. Here is my story: End of July, my mother was diagnosed with Stage 4 lung cancer that has spread to her brain. During the same week, my father passed away from a sepsis infection. Dad's passing was not unexpected, but Mom's diagnosis came out of the blue. It is not curable, but may be treatable for a little while. She has undergone radiation for the brain cancer and has just had her first IV chemo treatment - amlita (sp?). She cannot take chemo in pill form. The goal is to give her a little more time and have that time be quality time. We are taking things one day at a time and will continue with the chemo as long as side effects are not too severe and it is helping. So far so good. Needless to say that this recent health development has turned my family upside down. I am an only child and I live in a separate state from Mom. Mom went from living on her own to now being in an assisted living complex as the brain cancer can cause confusion and she cannot be by herself any longer. As for me, I have a wonderful family and friend support network that is helping with my mom and my husband has been wonderful as well. But....this has been/is really hard for me. I feel so overwhelmed and out of control most of the time. I so want to fix everything, even though I know I can't. I have FMLA for work, but that is limited time and requires me to use my sick bank first. I feel almost trapped by work and other obligations - no sick time to take a day off to regroup, not a lot of vacation time since it's a new job, days off are spent traveling to/from WI to help Mom, etc. I then feel bad about missing so much work, but tend to just stare at my computer when I am there. I also am finding it very hard to not want to just curl up on my couch and stay there indefinitely. Sorry to be so "all about me." I am trying to be strong for Mom and to keep getting things done, but I feel it getting harder each time I see her. It's hard to see her so frail and sad. She's lost most of her hair and has some scabbing on her lip and nose that we think is from the radiation. I am looking for support. I know as much as I want to stay on the couch, that is not a good option overall. Thank you for listening/reading, susan Tom Galli 1 Quote
Tom Galli Posted September 22, 2015 Posted September 22, 2015 Susan, Glad you found us. I don't read "all about me" in your post. True, cancer affects individuals but because of its level of devastation and limited treatment, it has substantial impact on families as well. My wife relates many examples of helplessness and fear as she guided me through treatment. She had to suffer in silence, afraid that if she told me of her feelings, I might grow even more despondent. Only years later, after my disease was well arrested is Martha opening up and discussing the affects my disease and treatment had on her. She shouldered a heavy burden. You are lifting that burden also even given your geographic separation. Your mention of being "overwhelmed and out of control" is typical and more importantly very understandable. It is your mother after all and we only get one of those a life time to love. As for dealing with work and other obligations, you might try seeking out local cancer support groups and expressing your feelings among a group of survivors and caregivers. I attend several in my area and we often have family members join to express their frustration and disillusionment with the treatment process. One thing for certain, everyone in a cancer support group will understand and has experienced what you are dealing with, so you'll fit right in. Here is an online resource that might be of use as you read in to the role of being a caregiver, even a remote one - www.lungevity.org/caregivers Stay in the course. Tom Quote
bjacksontex Posted September 24, 2015 Posted September 24, 2015 Susan, Sounds like you have a lot on your shoulders right now. You are trying to be strong for your Mom and your family. I just recently found this site myself. Been reading a lot of posts. Hearing about others does help cause I'm not alone. My daughter lives out of state too. She is freaking out over my diagnosis. Honestly, I've got it easy compared to her. I'm preparing my battle plan and reading up on all this. She's stuck in Oklahoma feeling helpless. I'd suggest you finding yourself some "me" time. Maybe a mani-pedi or massage. Just leave it behind for a little while. My thoughts and prayers are with your family. Barb Quote
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