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I read your post and it appears we are going through the same journey at the same time. My mother was told last week that there is nothing more that can be done. She is very jaundiced and has ascites. I haven’t decided if the amount of sleeping she has been doing is because of the cancer or the fact that there is nothing more that can be done.
I would also like to know a little more about what to expect. I am not sure why this is important to me but it is the question that keeps nagging me. I know that no one can tell us exactly but we really have not been told anything except she will get more and more tired.
I understand about being drained emotionally. I think that is the hardest part. I have actually caught myself wishing the end would just come since there is nothing more that can be done. I need to learn to enjoy the days we have left but I am struggling to do that. Our only good news is so far, mom has had very little pain and is only on a lose dose pain pill.
Dearest Carlyn, you will NEVER regret what you are doing. You are doing amazing as Caretaker and in some ways it is a journey that you will look back on and hopefully remember only the good, loving memories you hade. Hospice has a booklet that will guide you through in respect to what you will see and in terms of length of time. I used that to help guide me with my husband. Of course at this point the only and main concern is comfort! I kept Teddy home until his last 3 days and through his whole 6 year fight, that is the only thing I wish I could change. I didn’t think I could handle him at the end, but I know now I could have. Teddy loved his hospital bed that I set up in the living room as it was brighter and airier and visitors were comfortable as well and most of all his BIG TV was in there. And the “bags of stuff” is something I will never, ever forget! Some of the things you may see are more sleep, less eat, picking at the covers, less going to the bathroom. Teddy was on Morphine too with breakthrough every hour. I am so with you at this time and if you want to e mail me that is fine I am comfortable and up front with it all. Dig deep as you are doing, hang in, be strong.
We talked to the doctors and they said most likely the chemo would only make her sick and weaker. She chose hospice, she is done with all the procedures.
We had her home Thursday and Hospice came Friday morning (Loma Linda discharge team had everything ready including a hospital bed already delivered by the time we returned home Thursday night).
I reached deep and I have been draining and emptying bags of “stuff” that makes me gag. It’s hard but when I think of the alternative of her being in facility I am glad I am doing it.
It’s much more difficult to watch her suffer emotionally than I ever expected. I think she is deteriorating very fast but IDK because I have never done this. She suddenly can’t remember things and is unresponsive to my question at different times of the day. She is very bloated in the abdominal area, legs and arms (I guess everywhere). I am worried about too much medication so I am sticking to her normal schedule of every 8 hours for morphine and if she has break though a norco but only one between the morphine. She has used a few things in the Hospice kit for anxiety, but that’s it so far, and she seems to be comfortable. Sleeping 15-20 hours. We had a bath today and washed her beautiful hair.
Some people might say I drew the short stick geographically by my living closest I get stuck with taking care of all this. I told her that I would gladly choose the short stick for all the tea parties, scrap booking, piano recitals, graduations and birthdays we have shared over the past ten years that we have lived close.
Digging deep!
Blessings to you on your journey,
CarlynCarlyn, I can totally relate to the fistulas…. they were awful and take so long to heal. Honestly if anyone would have ever told me I would do “drain” work I would have thought them crazy, but I did. I took care of the external drain and then one in the back from his right ureter that had bent from the CC mass. Somehow we do get through it. When the ONC talked to us about Palliative Chemo for Teddy, Teddy asked him, “If I do this chemo what will it buy me”. The ONC said a month or so and that is when Teddy decided not to do it. To chemo or not is one of the biggest decisions on this Board and a very personal one at that. You might want to ask the ONC what he feels Chemo will do for her or is it likeyou say a false hope. Then a decision can be made. By the way if you mean Hospice for Palliative care they can be called up to a year ahead of any time frame. The ONC sets it up. Good luck on it all it sure can be overwhelming. You never know how strong you are until “strong” is the only choice you have!
Greetings,
Thank you all for your care and encouragement. Today Mom’s bilerubin went down to a 14. I also found out the put in another external drain in to her abdomen to drain bile that leaked from/during the stint procedure. The doctor said if she gets down to a 5 we can talk about chemo, right away my Mom was excited. I just feel like they are giving her false hope and then I get to be the bearer of bad news. It feel like that is all I ever- give bad news.
They said I could get home health to help with the drains, I just don’t have it in me to do it. I have been through this before with the fistula she had for 9 months. I just can’t do it. But I feel bad for not doing it, then I feel bad because I’m whining and she is the one with cancer.
She gets discharged tomorrow from Loma Linda about three hour drive each way. I hope we can arrange lab results to be done here at our little regional hospital and sent to them and just go down if it’s gets close to a 5 otherwise I feel like we just go all the way for more bad news.
It’s a roller coaster ride depending on which doctor you talk to and whether or not Mom wants palliative care or to try the chemo.
Blessings on your journey,
CarlynHi Sharon, Teddy had Vitamin B shots once a month at the ONC. Perhaps your Mom should be ‘grazing’ instead of eating. Very small meals but very often. A small bowl of soup, a scrambled egg and toast, buttered noodles. Again, the Carnation Instant Breakfast with a banana blended in the vanilla flavor.
Hello all;
I previously posted about Mom’s fevers and said I read a suggestion for Naproxen, but after reading about it I will not look to give this to Mom. She needs something aspirin free.
Does anyone have suggestions on how I can get her to feel better? She has no energy? She had one chemo treatment. Not strong enought for that now.
She’s always had anemia. She drinks lots of liquids, but is only able to eat small, small quantities.
I read about some alternative products like milk thistle, etc. Vitamin B shots???Carlyn;
I am sorry to hear about your Mom. I too am taking care of my Mom (76) with bile duct cancer. She had one chemo treatment and after that became very weak. I am now looking for advise on how to improve her strength if possible.
This is the best site to get love, guidance and so much support. My Mom has a low grade fever often. I just read an old post that said cc can cause fevers and to try Naproxen 500 mg 2twice a day.
I hope your Mom gets out of the hosptial soon. I have a nursing/care group called the Hope Team which I just called for my Mom. It’s something before hospice. And I need all the hope anyone is willing to give me.Carlyn…My heart goes out to you. This is a difficult situation at best and I wish very much for your Mom to be made comfortable.
Have you discussed with her physician what the next step will be and whether she is to be released from the hospital? I believe that a frank discussion with her doctor is in order. Please, let us know how things go. We care and we are in this together.
Hugs and love,
MarionDear Carlyn,
I am so sorry to hear about your Mom. She sure has had her share of hard times. I would like to welcome you to this site. We are all here to offer support to you. Feel free to drop a line anytime. I can’t really offer suggestions for your questions this time but there are many that have loved ones that have gone through hospice and can offer you advice. Take care and all the best to you and your Mom.
-Pam
Dear Carlyn, welcome to our courageous and caring family. I am so sorry to hear about your Mom. She certainly has had her share to battle. As for Hospice, they can be called in even a year head of any time and the Doctor sets it all up. The time for them would be when you feel your Mom is having trouble getting things done for herself. Hospice is terriffic as they are looking out only for her care and comfort. They will help you along the journey and time will be spent for you and your Mom to make memories instead of worrying about her day to day care. I had a hospital bed in the living room where my husband could visit with friends and family, have his big screen TV and it was bright and airy. They will order all meds and anything that is needed is taken care of and brought out usually the same day. Don’t apologize for ‘blurting’ that is why we are here. You did fine. Now you need to find the strength to guide your Mom along the rest of this journey and comfort is the key here. Be strong…you will be glad you were. You never know how strong you are until “strong” is the only choice you have!
I have been reading about all your journeys through this horrible cancer. My Mom was diagnosed with CC during the Thanksgiving of 2011. She is 67 with ulcerative colitis at age 48 completed an illistomy. Because of the steroids she took during the years her colitis was undiagnosed she has had advanced osteoporosis shoulder replacement, back surgery, intestinal blockage complicated by fistula, and many many other procedures. She also has cirrhosis of the liver.
We are perplexed that she was having a blood draw every 3 months yet when she started turning yellow the doctor said she had a bladder infection??? Anyway after a few different doctors and a complete work up at Loma Linda she has her diagnosis of CC.
We have had 5 different stints and an external liver drain (had to reposition it once already), She is currently in the hospital with bile in her abdomen. Doctors said it could be during the placement of the ECRP (stint) something was nicked, or her bile ducts are becoming mush as the CC advances it can happen.
I just don’t know how this terrible Cancer can move so fast with no symptoms, how will I know when it is time to call hospice? They can’t do surgery because the tumor is taking up the entire left lobe and some of the right lobe of her liver, the rest of her liver has cirrhosis. She is so frail they can’t give her Chemo. they said it would kill her. She can’t accept things and keeps repeating, “it’s cancerous” to everyone. So we just wait for her to die? This is horrible.
I am so sorry to just blurt all this out, I know you all have your own journey which is difficult in itself. Any direction would be appreciated.Blessings,
Carlyn
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