The rollercoaster ride of CC

Dear Ashley…..
It is only that surgery that the true extent of the disease is revealed. Diagnostic tools have limitations due to various reasons including, the thickness of the scan plates. We would be guessing as to why the physician had not mentionioned the lesions however; this is a good question to ask him. On this site and often times we have witnessed for residual tumors to respond to different treatments. Or, we have seen for it to “just sit there.” Everyone appears to have different experiences with this cancer.
http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
Is your Mom taking in enough fluids? I am not a physician and only can pass on those things learned either, on this site or, from other sources but, we have seen lack of hydration to cause elevated ammonia levels. Again, this is another question you may want to address with the physician. Your Mom’s inability to quit smoking may be related to the fact that it makes her feel good. We know the dangers of smoking especially following major surgery but, for the addicted person the harm caused may come secondary to wanting to experience some relieve from the pain and discomfort. Go figure!
Ashley, there are some things we simply can’t control. We can only do those things within our power. And, we need to understand our limitations. You are doing everything possible to work with a very difficult situation. Take a deep breath and allow yourself a bit of distance from it all.
I am hoping for others also to chime in. The wisdom of all on this site truly has become one of the greatest resources available to us.
Additionally I would like to attach another link provided by the National Cancer Institute:
http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
All my best wishes,
Marion

I am new to this forum and my experience with this disease is very limited since when my dad was diagnosed, our only option was to arrange in-home hospice care and so that is what I can speak about. Since that was originally recommended for your mom, would her doctor do so now?

In our case (I live in Hawaii), with the particular hospice we chose (there are four different hospices here), a nurse case manager comes once a week and a social worker comes once a month. Equipment for the home is also delivered if needed (a bedside commode might be helpful for your mom). Trained volunteers can also come once a week (run errands, etc.) and there is spiritual guidance if desired. Nurse’s aides will also come to the home several times a week to help with care if the nurse case manager authorizes it and respite care (five days per month) at a stand-alone hospice home is also an option.

The hospice people were terrific and they were there for my brother and sister-in-law when things got overwhelming (there’s 24-hour availability by telephone and a hospice nurse will come out to your home in the wee hours of the morning if need be!) So, if that is an option for your mom, please ask her to consider it.

I knew my brother would not be happy about strangers coming in to his home to help with dad’s care but they were all professional and tactful and I am sure that he has no regrets about the experience.

I do want to add that when my father-in-law was diagnosed with jaw cancer, it was not a surprise. He was in his mid-50’s, had smoked since he was 12 years old and was also a pretty heavy drinker. Even after going through a disfiguring operation to try to remove the cancerous tissue, he began smoking again. The only reason he finally stopped smoking was my mother-in-law’s brother talked to him and told him that this was really upsetting his sister. So perhaps if your mom has brothers or sisters or a close friend her age who can talk to her about this?

I hope this helps – take care of yourself and your family – encourage your mom to reach out for some help –