Discussion Board Forums General Discussion Abuela (grandma) just diagnosed!

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  • #52521
    mustangmort
    Participant

    OR, it could something totally different related to her condition. Always should be reported to the dr or nurse who is in charge of her care.

    #52520
    mustangmort
    Participant

    Senaida,

    No way to know for sure, but narcotic pain meds can indeed cause stomach upsets, vomiting, etc. If hospice has her on pain meds, make sure they are aware of the vomiting. Maybe of change of meds are in order. Sometimes its trial and error with pain meds to see what a particular body will tolerate the best.

    #52519
    senaida
    Member

    Thanks Byron
    I love that I can be around her everyday. Just noticing all the changes hurts me. She’s 82 and the happiest and most satisfied lady. She has been working with hospice for one week. The most current change is her vomiting, Could that be the medication or is it a symptom of the disease….?

    #52518
    mustangmort
    Participant

    Senaida, even though I am on the front end of this and not the back end, I have enough experience with “not feeling good” to know that I do the same kinds of things when I don’t feel good. I get cranky, want to be left alone, I want things a certain way, I get upset when things are not where they are supposed to be………every little thing becomes an emotional “big thing”. I fight really hard to not be this way, but it is just your mind trying to come to terms with the way the body is feeling. The only thing you can do is just to keep smiling and keep loving and serving any way you can (that won’t upset her, of course).

    Perhaps “brightness” represents the opposite of how she feels, so she wants no part of it. Ask her if she is in pain. If so, see if she is willing to take the meds necessary to alleviate it. I know I get the “crankiest” when I am hurting.

    All my love goes out to you, abuela and your son. Keep smiling…..she needs it.

    #52517
    senaida
    Member

    Okay I will check her postings.
    As the days pass by, I realize how many little things are changing…. She does not want to go outside, she wants all the windows closed… she gets aggravated really quickly… Although she is still up when she can be..she is cooking and cleaning :)
    I think the worst part of this is knowing the worse but not knowing the time line.
    thanks
    marion

    #52516
    marions
    Moderator

    senaida…you might want to check some of Margaret’s postings (mlepp0416) as she has much experience with drainage. I believe that she has become an expert in this area. Know that you are really being stretched emotionally and you must remember to take care of yourself too. Having lost a loved one within this year and now your beloved grandma fighting this disease makes things very difficult to deal with. My heart goes out to you. Please, continue to reach out to us and for extra emotional support you might want to contact our Dr.Giles. You may find him, top bar,

    #52515
    senaida
    Member

    We went to the Dr. today to followup on the metal stent procedure. The doctor said there is not any direct blockage but there is still a problem with the drainage. W e are to keep monitoring the bandages and flushing as needed. We will go back and check in 7 days!

    Thanks

    #52511
    lainy
    Participant

    Excellent on the cream. I know how you feel as I lost my husband last December. Sorry that you are going through this loss procedure once again!

    #52514
    senaida
    Member

    Yes, I have read the booklet for the second time this year. I lost another loved one last year and the secondary trauma is insane. I am indeed blessed to see her everyday!

    Its just scary to think it could be as close as 3 months away.

    I will pick up some cream today!

    Thank you
    Senaida

    #52513
    lainy
    Participant

    Dear Senaida, as I mentioned before if you ask Hospice they have a booklet which show the stages and what to expect. I found that my husband followed it almost perfectly. It will give you a good idea what to expect and how to handle it. She sounds like a very wise woman and I am so happy the you and your son are getting to spend so much time with her. There is a good cream at Walgreens/CVS called Sarna and it really works well to help with the itching.
    Wishing you well on this journey that no one wants to take. Hugs to your Abuela.

    #52512
    senaida
    Member

    This weekend was a hard weekend! There are a few noticeable changes I have experienced. She is having pain in her arm and lots of itching! She is being heavily medicated to stop the pain. On a positive note, she is smiling and sharing lots of wisdom. I am blessed to be able to spend everyday with her. My son is getting to spend quality time with her as well.

    She was diagnosed at the end of July and has had 3 surgical procedures since then. Her final surgery involved her receiving the metal stent. She still has the internal/external port which at times we are required to use.

    I’m not sure how much time we have with her. I think the most difficult thing im dealing with is knowing the worse, but being unable to know when that will happen.

    With the information given above, does anyone know of anyone who is/or has been in this limbo state, unsureness…… its driving me crazy :(

    #52510
    lainy
    Participant

    Dear Senaida, thanks for the update. I am so very sorry to hear about the latest CT findings. In answer to some of your other questions, I believe the Cancer will keep growing. Eventually she will become more tired and eat less. Hospice will provide you with all the Meds and will take good care of her. Hospice has a very good booklet on what to expect and you might ask them for one, they usually give it out. I know that Teddy followed what the book said, pretty closely. Just keep telling her how much you love her and show her that you can be just as strong as she. Please keep us posted.

    #52509
    senaida
    Member

    thank you!

    NEW Update:

    New information as of today per the cancer doctor. The report from the CAT scan from last Thursday is as follows..(1) new fluid in my abuelas upper left quadrant which is most likely cancer but can’t be diagnosed 100 % as cancer without further testing. (2) pulmonary nodules on her lung which were not there late July and early August. The doctor believes it is cancer but he can’t be 100% sure without further testing. my abuela doesn’t want to do any radiation so there would be no reason to further test these areas. Update on yesterdays surgery is that the bandages are having to be changed every hour as they are soiled with bile fluid. She does still have the external/internal connected to help the draining!

    :(

    #52508
    pcl1029
    Member

    Hi,
    Yes , the tumors will continue to grow unless treatments like chemotherapy or radiation therapy provided.
    The following 2 cases from this web site may be of help to you in answering part of your questions if no treatments are provided but just having stents replacement alone.

    Case22. my dad has cc. he wants no treatment at all. he is 75. we had him to pittsburg. he was supposed to have surgery. he has refused. he wants to past away at his home. we respect his decision. please let me know what happens now.(10/12/2010 entry) dad is very weak. his cc is in the last stages. he is now in north carolina with my sister. he needs constant care. he can’t even walk. he is refusing any hospital care. dad had a stroke about 5 years ago and he can’t hardley talk. his left arm is paralizied, but he still tries. when dad tries to eat it comes back up. not nausing, just can’t swallow. a little pain, not alot. weakness is his main problem. Dad has been admitted to the hospital in NC. He has jaundices again. They are going to do the stents again. He has agreed to a feeding tube . dad was send home. he was not dehyrated nor under fed. Just the cc. put him on antibotics(to keep pnem. away) Hospice is coming today. Hospice has started to help now. He has pain patches and then breakthur meds. hospital bed, potty seat , wheelchair, walkers, the list goes on. I pray my sisters can handle it all. Dad’s eyes are now rolling to the back of his head, when he sleeps. Its so scary. The reason I’m writing this is to keep people, like myself, informed at what might happen .(11/3/2010 entry) hes in alot of pain. have him on metadone and breakthur meds. Pittsburg wants to do another ercp on him he says no. his choice. but he is still hanging in there.. He had the cather took out. still hard for him to use the potty chair.11/8/2010 entry) dad’s not doing good. his heart rate is down to 46. he is just here. they say that his heart will make him go before the cc. I think hes tired of fighting. maybe 2 days to a week left. they say most likely he’ll go in his sleep. He runs a fever and then chills. he woke up ,only to throw up, and then back to sleep. hes weak. oh ,so weak. no smile, nothing.(11/16/2010 entry) update on dad he is walking, talking and has moved back to wva., on his mountain. he still is sick but he seems to be getting better. Is this possible? This man was on deaths door ,now he has surprised us all. Is this a normal part of cc?(12/21/2010 entry) update on dad. he is as yellow as a banana. his liver enz. r 12.5. still refuses the surgery for stents in PA. He says he’ll go to the hospital when he gets sick. He is still walking and eating. his bp is totally normal and pulse is 68. He weights 127. lost 3 lbs.(1/9/2011 entry) i beieve everything happens for a reason. dad was in a bad car accident. he broke 7 ribs. drs said his bones were so thin u could see thru them. that the bad news. good news, since he was in the hospial the drs seen how yellow he was and how high his liver count was(14.7) they done the stent surgery. both stents were completely blocked. they unblocked one side. the other side the klatskin had completely block. cant get that one in. one unblocked stent is better than no blocked stent. if the cc dont get him, he hAS aleast another 2 to 4 months here on earth. his liver cout is now 11. micrales happens.(2/22/2001entry) dad is still kicking(as he says) He had to go to the hospital. He has started to hurt a little more. Just the cancer pain. Other than that hes doing fine. his stent is doing good(he only has 1 working. the other one is blocked by a tumor.) liver 1.5. very good. (4/25/2011entry) update on dad. he is still going strong. he has to have another stent replacement, but so far so good. he still lives by hisself and doing everyday stuff.(6/19/2011entry) dad is still with us. tomorrow is his birthday. Thank God for all the miracles. He will be 76. Still doing his own things. no treatment just some pain meds. still driving, taking care of his self. He is doing so good. its unbelievable. in sept , the drs. said a month at the most. almost a year has gone by and he is still here. a few close calls, some stent replacements, but he is still here!!!!! thats the best Fathers Day ever!!!!!!(9/19/2011entry) its been a year now , dad is still with us. he has two more stent replacement since i was last on here. about every 2 months now. he is yellow again. been a month since last replacement. he seems to be doing good. just pain meds. Still lives by his self. my brother lives above him. keeps a good eye on him. dad looks bad, but he doesnt let it get him down. he has brought him a trailer and had rooms big on. i think it just gives him something to do, cause he has two homes. he has got himself some more dogs to raise. he just keeps busy. he is a unbel.iveable. keep us in your prayers—-sistercorb 10/10/2010.(No treatment,just stents and still doing ok for a year as of 9/19/2011).

    Case23. (67 years Female) (9/5/2010entry) My mother-in-law was just diagnosed with bile duct cancer. She has received an exterior drain and goes in this week for the metal stent and ercp test. She is very tired and has no energy. I’ve read after chemo this is normal, but is this to be expected just newly diagnosed? Just 4 weeks ago she was active, busy and full of life. my mother in law is also oping for no treatment. She’s being treated through Mayo Clinic in Jacksonville. She did have a plastic stent inserted just two weeks ago,what a HUGE difference it has made. She doesnt want any surgery, etc. I’d love to stay in touch with you since we are in the same situation . My MIL is only 67 and otherwise was in terrific shape and health as a horse, or we though.We found out she had cholangio around Aug 1st…she was jaundiced (and had an external drain) and boy what a tough 60 days until the stent and capping off the drain. She says now she feels almost as good as she use to. Dr’s are not very promising sounding, very professional but have prepared everyone for the worst at this point. 3.- . (9/5/2010entry)She’s 67 years young! The doctors do not feel having surgery would give her any more additional quality of life time and since she lost her husband to cancer after several major surgeries and recoop, she is determined not to go that route. She doesnt feel the major surgery and recoop will offer her much more time than things just taking their course . Although the dr’s have no said a time limit (thank goodness, there’s no stamp on her–borrowed that from the commercial). She’d rather have the stent and possibly radiation and have as much enjoyable time as possible. I am just concerned that all of a sudden she is so tired. She has no pain and the jaundice has been gone for about two weeks. Her cancer is in the bile duct and tumor blocking the bile from passing. The doctors told us she would more than likely have the same time frame for quality of life with and without the surgery. She’s been to the hospital with dehydration My MIL cant get out of the bed except to go to the bathroom and then it’s a major ordeal for her. This has happened in just a few short weeks – since diagnosis. She is just exhausted to go 20 feet and back. She can’t even talk alot, it just wears her out. She’s completely bed ridden all of a sudden, she cant even walk to the kitchen. She has no pain, no swelling, no problem breathing, nothing other than total fatigue.(9/30/2010entry) She had a plastic stent put in on Monday and some fluids!!! We have a new woman in the house! On Sunday evening she wasn’t even able to lift her head off the pillow. Monday she got “rehydrated” and a plastic stent. WOW what a difference from rehydration. She came home, walked in the house, up the stairs around the house, got ready for bed all on her on. What a difference and we are so greatful! She’s in no pain, not sick and today she tells us she is even getting around the house and sitting on the porch for the second day in a row. We are on cloud 9 for her! (4/26/2011) Today shes moaning while she sleeps, hubby cant really even get her alert. Having a hard time getting her meds in her but getting them down in time, Not eating or drinking and really no communication from her today. Hospice came by for their every other day visit, but it was only an aide so she asked a few questions and left. This is so sad. The moaning is new and we just dont know what to expect next. (4/27/2011entry) Hubby called Hospice today and MIL had a better day than yesterday but of course no days are really good. Hospice is coming out tomorrow to help out even more. We also have the 24 hours being covered. We just want to make sure she is in no pain or discomfort. Yesterday was a glimpse of just what is ahead, it’s just so so so sad. (5/16/2011) Haven’t been on here in a couple of weeks. Lost my dear mother in law and finding some time now to reflect on this dreadful cancer. –isellure 9/5/2010.( no treatment,just stents,survive for 10months without treatment)
    God bless.

    #52507
    senaida
    Member

    Oh yes that description does make sense, thank you!

    Okay so now that she should be feeling better and her pain should be managed. Will the cancer /tumors just keep growing? They haven’t removed any of them. Hospice and the Dr’s have said she has till the end of the year. I just wonder what the process will be. Will her organs begin to shut down? I guess my question is, how ill this cancer take her from us? Will this metal stent just help her feel better or could it possibly extend her prognosis?

    Just questions….

    I’m doing lots of research but still have so may questions….

    Thank you

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