Help for Mom/family
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Smash-
Just read your story. Ugh, I remember the feeling when my grandmother was diagnosed. I wanted concrete answers and got soooo frustrated when I felt like nobody would give us any.
My grandmother was 83 when diagnosed and had a list of other health issues prior. That being said, I will say that juicing seemed to help. She was big on Ensure and rice pudding also. Getting my Grandma Ina to eat was an ongoing battle. It was hard on her too. She knew she should be eating and wasn’t hungry. That scared her and caused anxiety. I remember going to the grocery store almost everyday hoping to find something she’d like.
Keep posting and asking questions. This board is a huge source of support.
ToniaK
Hi Smash 367, I am about in the same place you are with my mom. This web site and the people are wonderful. I do not know what I would have done without it. I can find out just about everything and if not just ask. I live in Oklahoma and my mom lives about 90 miles from here so I am going back and forth as well and have one child in elementary and one in middle school. My husband and friends have been a blessing, they have helped me so much and been so supportive.
My mom is 72 years old, and also have congestive heart failure and she was just diagnosed on March 21, inoperable and she is home with hospice care. We have someone come in to care for her during the night, so that my dad can get rest. It is very hard watching someone you are so close with go through something so terrible, I love her so much……., I am home with my family today and have talked to her 2 times today. We set a hospital bed up for her in the dining room and she can make it with help and a walker to a recliner in the living area. Her abdomen is very swollen as well as her legs and feet, she is on oxygen, she has a cathedar and she will not eat as well. She did eat a strawberry shake yesterday. Ensure sometimes. But I received great suggests as you did on Saturday. My mom has purplish/ reddish spots on arms and legs, is this a normal symptom anyone? Thinking of you and hopefully will be chatting and here for support to anyone.When I could eat only shakes and smoothies, I always put in a big glob of peanut butter (a couple tablespoons.) It adds lots of calories and “good” fat. (Mixed with yogurt, juice, frozen berries, and whey protein powder.)
Hope this helps!
Kristin
Smash, Lots of shakes….I used protein powder, yogurt, fruit…i kept lots of bags of frozen berries, peaches…etc. on hand and fresh bananas. Add some flax seed oil to yogurt also. If you have a juicer….juice 4 apples, 2 limes and 1 lemon–makes a great fresh apple juice. and juice other kinds of veggies for nourishment. These drinks will nourish her if she can’t put food in her mouth.
I would also start giving her turmeric pills. If she can’t take the pills, try giving her a tablespoon of turmeric everyday mixed with some oil olive with black pepper.
http://www.cancer.org/docroot/NWS/content/NWS_2_1x_A_Cancer_Treatment_in_the_Spice_Cabinet.aspAlso, ginger pills with help with the nausea….also, I kept a fresh ginger root in the house all the time….try some in a glass of water…sip on it all day.
and/or freeze the water in ice cube trays and let her suck onthe cubes.
Also, get her on vitamin d–google “vitamin d cancer” and you will see all the information out there.As you can tell, I am a big proponent of adding natural stuff. The turmeric information from MD anderson…it’s credible enough for me…my kids take it now because of family predisposition.
Good luck
LuluThank you all for your responses.
As for the second opinion, we did get one and it was the same as the first. Her oncologist does seem hopeful but until we can get her strong enough, they can’t start chemo. She did not want to do chemo at first but was talked into it…I wonder if that is why she isn’t that concerned about getting stronger.
I know she is on the strongest anti nausea medication that is not IV but I forgot the name. My mom has always had a weak stomach and has been a picky eater. I live about 2000 miles from her and have been back and forth for the last 2 months. It is hard to leave and not know how things wil be when I come back.
We are just praying for her strength to return.
Hello,
I would also like to welcome you. I am glad you have found this site, but sorry that you have a need to be here. It is true that there is nothing common or normal with this type of cancer. It seems to have a mind of its own & treats everyone differently. I too think a second opnion would be helpful. Search the site as you will find a lot of helpful information. Also, ask the doctors a lot of questions and keep asking until you get the answers. I am sorry for what your Mom, you and your family are going through. I will keep you all in my thoughts & prayers.
Darla
I am so sorry for you and your mother. This disease does its own thing and we are all affected differently by it. We share often the same symptons (sometimes not), but the course of the disease is the course for that person alone. Some people like our Jeff have managed for years. Some of us the disease takes control. How it develops is individual, but we are here for insight and information on how to manage symptoms and possible outcomes. This is the best place for moral support as well so dont think you just cant vent, complain, worry, whatever. We are all in this together.
That said, getting different opinions is important. Also, those life estimates…throw them out the window. They are a guideline, nothing more. There are DOZENS of people on here who have lived YEARS (and continue to live) past their doctors estimate. We are not a jug of milk and we have no expiration date stamped on us.
There are several posts about what to expect at the end. I think they are in the hospice, pallitive care section. I am sorry, but as a patient, I dont read those because for me it is too much information right now. But I have seen the thread titles, so I know they are there. Try to use the search function.
I remember my doctor telling me there were no unhealthy foods at this point. Sometimes your body just needs calories, nutrients can be supplimented for in drinks like ensure, powders and vitamins. So find the food that she can taste, go with it and suppliment the nutrients. For me, cooked food was the worst, I could only eat fresh things and pizza (who knows why pizza), but everything else made me gag. One reason she might be getting sick, is that the tumor is pressing on the digestive tract and causing a blockage. This happened to me and they rerouted my digestive system and I am doing great now. But when things werent so good, I remember looking up easy to digest foods and there were so many fabulous exotic things.
I hope your mother improves.
Hugs.
KrisMy grandmother complained about food tasting like sawdust. I gave her Haagan Daz vanilla ice cream and 7-up (float). She loved it.
Marjo
I would also like to welcome you to this site although, I wish the circumstances where different. I agree with Patty in that this cancer can effect people differently and that a second or third opinion might be something you would want to consider. There is muth information shared on this site and although, time consuming the Search function is invaluable tool in gaining insight to this cancer. Keywords such as “vomiting” (you may omit the author) will lead you to prior discussions. Also, this is an important time to stay in touch with the physician who may be able to prescribe medication to counteract some of the symptoms your Mom is
experiencing. Certainly, you should try anything possible to make your Mom more comfortable and if needed, contact Hospice.
And continue to reach out to this board which has the most incredible, giving and caring people.
Again, so sorry for you having to join us but, I am so glad that you have found us
Hugs coming your way,
MarionHi,
Welcome to our little family, you will find a lot of help here. There can be so many complications with this disease, even for those who do not have surgery, and such setbacks can really start to have a cumulative effect in terms of weakness.
Have you sought a second opinion? What is your location? I just think your mom is awfully young and her good health prior to diagnosis is on her side.
As for getting her to eat something, someone just posted about this and there is a helpful answer, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2662
You can also try adding soy protein powder to the smoothies. Jello might also work. Here is some more helpful information:
http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/patient/allpages
Patty
My mom was diagnosed with bile duct cancer in Feb 09. We are told it it inoperable due to the large number of small tumors growing troughout her bile ducts. There is concern that it has metastesized to her stomach, liver and now possibly breast(she is having pain in one area and there seems to be a lump). She is only 55 and has been in good health until this.
We keep hoping she will be able to start chemo but has had many setbacks. She had an infection in her stent that got into her blood stream and is now battling a nasty flu. She will hardly eat anything, a few bites a day atmost, and is getting weaker by the day. We are trying to stay hopeful but it gets harder . At diagnosis, she was given a few weeks to a few months. We are now aproaching the end of that time and nothing has been done. It is so frustrating!!
My question is for people who have gone through this. We keep being told everyone is different, but surely there must be some commonality. How are we to know when the end is close? Any ideas for getting her to eat? She is not in pain, but she can’t keep any food down and she says everything tastes like cardboard. We don’t know what to expect…just confused, angry, frustrated.
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