Beckie Posted June 13, 2006 Share Posted June 13, 2006 Hi, I haven't been online for awhile. I have a question, my mom is still in bed. She still isn't eating much and is very shakey. We go to fox chase on the 22nd but, she was seen by her radiologist the end of may. He said, this is something that happens to 5% of people who receive brain radiation. She is getting tpn through her port every night and the physical therapist comes twice a week. Has any one else experienced anything like this. Her oncologist said he thought radiation pneumitous (?sp). Her radiologist said no it is the other thing and of course my dad can't remeber the name. My sister and myself are going to the doctors with them from now on. We started too in the beginning but when everything looked to be ok we stopped. Neither one of us live near philly so it is time off ect.. not that our mom isn't worth it because she is, we just thought it was ok for my dad to handle. This has been very hard on evryone involved. I am just looking for some help. She had the preventive cranial radiation and everything went down hill... I don't know what to do. We stopped the dehydration by getting her admitted just days into the not eating or drinking. Now she is drinking but really has no appetite. I am very scared. Sometimes i am ok other times I am really not ok. There just seems to be no answer. Just recently my dad told us he was under the impression my moms cancer had gone to her liver, my sister and I immediately call the Dr. Here my dad had walked around for two months thinking my mom had cancer in her liver and they had said they saw something but need to look futher. It isn't cancer. She has apparently had this most of her life because even she knew that it was there. Her home health nurse isn't very much help. She had said to me that she has mets to the liver. When I asked where she was getting this she told me she had spoken to the dr. When we spoke to the dr., he said he doesn't even know her. He speaks to the office and would not give dx to her anyway. I do believe we know what everone else knows now. I think my moms dr is a wonderful man and I do trust him, he has not lied to us even when it was very hard to tell the truth to us. He told us this is terminal, we just refuse to believe him. Not that we don't trust him but we have other Ideas in mind. My mom is 58 and I am 33, not ready to lose her. Too many grandchildren, Now is when I need her the most. I really miss her. We don't burden her with our problems anymore, she has enough to handle but I MISS HER. I know I am being selfish but I really do want my momma back. Talk about a roller coaster ride. My family has been through so much. Her face is also really swollen. As far as I knw, she isn't on any steriods. I think if she took steriods it would probably help but they had done so much damage to her she doesn't want any more. Please anybody with advise or thoughts even if I am not going to like the answer. I haven't liked any of this so far. I just don't understand and I am not a stupid person, although things have changed. Stress does aweful things in your life. I hate this cancer. So rapping up, if any one can help, I am in great need. Thank you for atleast listening.... Quote Link to comment Share on other sites More sharing options...
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