thecdr
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Kristin, you and my son would solve the worlds energy crisis with all the methane you must have released!
Just remember that the key is calories, don’t worry about what they are, this is not the time to worry about the food pyramid. There are appetite enhancers such as Megace and Marinol, and if you are inclined, marijuana for medical use. Small frequent such as Belle says. even if you find just one or two things that he will eat and serve them over and over again. I found that sherbet and malts were the best, now I can’t eat those because of the oxaliplatin, grrrr!
PattiB, just remember that you are the patient and therefore the customer. If your doctor gets defensive I would take this as a warning sign, you have every right to seek a second opinion and should. any doctor worth his salt should not only not mind your wanting a second opinion, but should encourage it. If he/she is offended by that I would not have a lot of faith in that doctor, but that is JMHO. You can start here by looking under the Major Cancer Centers, they all have contact information and will tell you what kind of information you need.
Don’t be scared of your oncologist, remember, it is his RESPONSIBILITY to take care of you, it is NOT your responsibility to take care of him. You have been given a very serious diagnosis, it IS your responsibility to make sure that you are being given the correct information. Good luckBarb aka “the commander”
Hilda, I have a 10 year old son who I am worried about as well (I am a single mom). Don’t dwell on the life expectancy bs, the truth is no one really knows, this disease is so rare they don’t have enough statistics to be able to say for certain. I am not so naive as to think there is a cure, but there are enough people on this board who have beaten the stats to give me faith that maybe i can too. RESEARCH RESEARCH RESEARCH, don’t just go on one opinion, talk to Mayo or one of the other cancer centers, but don’t just accept.
When I first got sick cancer, never mind CC, never once entered my mind. I had had all the screenings, didn’t smoke, blah blah blah. fooled me! Sometimes I have to wonder about this big cosmic joke, but I realize now i don’t have time to dwell on it, I have a son to raise and my biggest job right now is to stay on this planet as long as possible so I can do that.
The book is great and loads of fun. YOu can order one of the F*** Cancer hats through this site: http://www.jackiefarry.com/cancerhat/
by the way, Kris also has a site and blog: http://www.crazysexycancer.com/
For all you wonderful caregivers, as far as I’m concerned, vent away, you not only deserve it, you need it! Your ordeal is often every bit as difficult as what we the patients are going through. I can’t imagine having to watch my loved ones suffer through this disease. So, vent away!
I think that if we all looked back to the months prior to our diagnosis we probably would notice changes. I certainly did, no energy, bad mood, but I put it down to menopause and the need to get off my butt and exercise. Were these symptoms? Maybe. Should or could I have done anything different, I’ll never know, I even went to the doctor the day before I was hospitalized and we both put my feeling lousy to a stomach virus. That’s the problem with this disease, there are no definable symptoms where you can say, I need to get tested, there aren’t even any tests. So, instead of the shoulda, woulda, coulda, I prefer to look forward and concentrate on what I can do now.
thanks Becky, this was a very interesting lecture and the timing was perfect as I will be having my angiogram on friday and my first dose (I hope) of sirspheres on the 21st
Barb
Amilcar, I know that you are making this time with your dad a very special time and that when the time does come it will be filled with love and cherished memories
Barb
LISA, never feel bad about feeling good! I remember the first few days after I had stopped the Tarceva, it was almost like I didn’t have cancer at all! Then I started feeling guilty, as if we’re supposed to look and feel sick all the time, hogwash. Feel good, feel great as a matter of fact and tell us about it, it’s a message of hope that we all could use.
Barbannshal wrote:thecdr..When you refer to agency staff are you referring to the hospice people using temporary help from one of the temporary help agencies? When my sister in the UK was dying she had hospice come in every day. The young woman brought her knitting and talked, got her meals, bathed her, etc. This went on for about 4-5 months. Her husband, my brother-in-law had a furniture store and he went to the store every day, went home for lunch and of course took care of her after the store closed. The final three weeks he did not go to the store, but stayed with her. I have heard people say that here in the U.S. hospice might visit anywhere from 1-3 days each week, or every other week. Does it depend how close the patient is to the end? Sometimes when reading the obituaries ( I know, morbid) the writer will express appreciation to the hospice people and sometimes gives the name of the hospice.
IreneAnn, yes that is what I mean but it doesn’t matter what stage the patient is in, what it depends on is how short staffed they are for that particular day or week. this is not a general statement that all agency nurses are bad and uncaring, quite the contrary, I myself was an agency nurse. But the difference is that permanent staff members are in the job because they like hospice work and have the experience, this is not necessarily the case with agency nurses, much depends on the agency the contract is with. Do your homework and ask the tough question, how much do you use temp help and then see if they will guarantee it
Robyn I am so sorry you had this experience but thank you for writing about it. Your experience points out the fact that research is absolutely imperative and the earlier the better. your comment about asking specific questions is right on the money
Tom, the itching is due to liver failure and quite common. One very simple remedy that helped me quite a bit was Eucerin Calming Creme. good luck
