February 18, 2010 at 1:52 am #35664cherbourgParticipant
I took the liberty of searching the site for this and am copying it as Marion posted it. I think it’s great advice:
Caregivers Bill of Rights
I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for just as if he/she was healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things for myself.
I have the right to get angry, be depressed, and express difficult feelings once in a while.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter is she/he knows they are doing it or not.)
I have the right to get considerations, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
I have the right to take pride in what I am doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
I have the right to protect my individuality. I also have the right to a life that will sustain me when my loved one no longer needs my full-time help.
National Cancer Institute
Support for caregivers
PamFebruary 17, 2010 at 10:29 pm #35663gavinModerator
My dad’s treatment was PDT so if you want to know more about his experiences with it then you can use the search function here to look for some of my earlier posts regarding it. Or if you prefer, please feel free to ask me anything and if there is anything I can do to help then I will.
GavinFebruary 17, 2010 at 8:46 pm #35662susanneMember
My thought and prayers are with you and Marc. My dear Dad died from bile duct cancer that spread to the liver. He too was late in presenting symptoms. We did contact a world renowned specialist at the University of Virginia. He uses photodynamic therapy in treating the cancer. He was wonderful in speaking to us. It may be an option for you. Google him.
Also, keep the faith. Prayers do work.
SusanneFebruary 17, 2010 at 6:55 pm #35661gavinModerator
It may not feel like it to you right now, but things will calm down for you soon. And yes, what you feel like right now is very normal. I went through the same with my dad and I know that everything may feel overwhelming right now, but you will not get lost in all of this. Once you get the finances and stuff sorted out then that will be that done and one less thing to worry about.
I hope the new stent works well for Marc and that the Doctors get his sodium levels sorted. And no Lainy, being a lister has nothing to do with age, I always make lists! I made lots of list for things to do with dad, but I still do make lists! Lists for shopping, lists for things mum needs and lists for things mum wants me to look for on the net for her! I think I’ll always be a lister now!
GavinFebruary 17, 2010 at 4:22 pm #35660lainyParticipant
Sorry to disappoint you Jeff but you are oh, so normal! Things will settle down, I promise. I became a lister, I list everything to make sure I didn’t forget anything. Some of that could be age as well! As for the sodium levels and the swollen legs and feet, there are so many twists in our road that come along and we straighten them out one by one. Wonderful that Marc’s mom came out and I am sure just being with him where ever he is will be fine with her so try not to sweat the small stuff. I am a mother and I know if my kid was sitting on a tree top I would join him and be glad to be with him. Take some deep breath’s and honestly it is all going to ease out soon. Regards to Marc as well and tell him people from around the world are cheering for him.February 17, 2010 at 4:11 pm #35659
We are currently waiting for a response from the VA Eligibility from our new application that we had to file yesterday for Hardship. There were a lot of errors in his first application that was found by the head supervisor. We do not have an answer yet, but this does look promising. IFebruary 17, 2010 at 8:12 am #35658devoncatParticipant
Just wanted to add my welcome to the site. Let me echo everyone elses sugestion of a second and third opinion.
Good luck on your partners treatment. Let us know how it goes.
KrisFebruary 16, 2010 at 2:35 pm #35657ashleyParticipant
Jeff and Mark,
Sorry to hear that you have to spend time dealing with benefits/insurance at a time like this.. I would just want to echo what Sue said.. that many times tumors can be reduced in size and THEN resection becomes and option.. You should also look into microspheres, esp if there is only ONE tumor and it has not metasticized. Very few side effects.. Not sure if you are up for travel but Dr. Kennedy in Cary, NC ( wake onlcology) will take your scans via mail and let you know if he thinks Mark is a candidate. Although I know bilirrubin has to be under a certain number.
Also wondering if they plan to internalize the drain? I know from my mom’s experience the external bag can really cause depression and limit your movement – she curtailed all of her activities because it was just very uncomfortable for her. When she went to the Mayo for her second option the first thing they did was internalize the stent and get rid of the bag. She went from being depressed and in a wheelchair to walking around within a day and most of the change was psychlogical ( my opinion).
I believe I have Dr. Kennedy’s email on my home computer. If you are interested send me an email and I will get it for you.
AshleyFebruary 16, 2010 at 12:32 pm #35656scragotsMember
Jeff and Marc,
Everyone has given you great ideas for furthering your research. I, too, definitely think second and third opinions are excellent ideas.
Now for my two cents: My tumor was approx. 6 cm X 6 cm and I was very fortunate in that I was able to have surgery. I am not saying that your circumstances are the same, but please do get another opinion. I have heard of others with much larger tumors having resections. Of course, I am certainly not a doctor, and have no idea what the exact situation is, but where some doctors immediately say NO, others will, at a minimum, attempt to resect the tumor.
Just don’t give up. I am three years out from my resection and doing very well.
SueFebruary 16, 2010 at 12:04 pm #35655mlepp0416Participant
Every veteran can receive health care at a veterans hospital, regardless of their income. If Marc is looking to receive something like vererans disability then income may be taken into consideration, and if he has private health insurance they will submit claims to the private health insurance. Our health insurance paid the VA over $400,000.00 for Tom’s care.
Something is wrong if they are saying that he can’t receive medical care. My Tom is non service connected and he receives disability from the VA. I do know that in recent years they have made some changes to the guidelines for receiving non service connected disability.
MargaretFebruary 16, 2010 at 3:20 am #35654marionsModerator
Jeff….let us know. There is a lady we might be able to contact.
MarionFebruary 16, 2010 at 2:22 am #35653
We are not completely sure yet as they are saying it has to do with income. Though the Oncologist says she has patients she is seeing that make triple digits and really believes there is an error somewhere. We are meeting with Consumer Affairs in the morning to hopefully clear this up.
Houston TexasFebruary 16, 2010 at 2:14 am #35652marionsModerator
Jeff…..why is that Marc may not be able to receive VA benefits?February 16, 2010 at 1:45 am #35651lainyParticipant
Marc, Jeff now has the the most elite and premier in Cancer and MD Anderson should not take long. Gather all his test results and documents and just take them over or FAX then and you will hear back. We have had people fax them from all over. If you use our search engine at the top of the page and type in MD Anderson I am sure you will find a ton of posts on the subject. Good luck!
Good move!February 16, 2010 at 1:40 am #35650
(smile) I have been using a notebook and even been using it to write down information you all have been providing me in this thread. This was also suggested by my sister as her husband has been diagnosed with liver cancer, though a different type than Marc
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