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PS, Pamela, I’d like to hear about your daughter. You can send me to another discussion board or use the e-mail address on the website.
Hi everybody, If you don’t mind I’d like to pray with and to my CC family (I know this may not be politically correct, all religions can do the same)
Dear Jesus, I thank you for the many blessings you have given me(us). If it wasn’t for your strength I’m not sure where I would be emotionally and physically. You are our gift and you have given us the Holy Spirit. He never leaves our side. I pray:
Hebrews 13:20-21 NIV
May the God of peace…equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to who be glory for ever and ever.” In Jesus Christ name we pray Amen
Just a reminder today is the last day of the year. The last day I collect money for CC in 2011 under Maggie’s Collectibles. Did you forget any family or friends, do you have Christmas money you like to spend???? Come on, how about someone you know.. did they forget to buy you your gift :rolleyes: send them on over to Maggie’s Collectibles. I’ll do anything to help.
Peace and Good Will in 2012.
Love you all
Thank you, slowly but surely I’m coming back. But I’m very scared. It’s scary to come back here after spending almost every waking minute reading this board for 8 months.
I’m glad to hear some of the “old names”
Unfortunately there is not just “a” right answer to treating cc. It’s very frustrating. Don’t drive yourself crazy looking, looking and looking. Yes get as many opinions as possible. I found that many drs are willing to consult with you over the phone. Get copies of all medical records, including PET scans, MRIs etc. You will send these to the drs you are seeking medical advice from.
But again, don’t drive yourself crazy. There are no wrong decisions. Make sure you make time to smile and laugh with your husband and family. Don’t put off anything you’ve always wanted to do together.
Good LuckMay 30, 2009 at 2:42 pm in reply to: Photography to raise awareness of Cholangiocarcinoma #29142
These are fantastic pictures. They definitely tell the sad story.
I understand completely the difficulty and pain you are going through. I lost my dad in October 2008 after a diagnosis in Nov 2007. We found that my dad’s hallucinations were caused by the morphine. He had terrible reactions to the morphine. I think that once hospice comes in that they pretty much just want to keep them in a sleep state. Not sure if it’s good or bad just my observation. As the disease progresses to it’s final stages you’ll start noticing subtle changes in your mom. In the case of my dad his breathing rhythm changed ever so slightly. Hospice denied it but the family could see it. Then his breathing changed dramatically.
My heart goes out to you. I pray for strength for you during this difficult time.
The question you ask is one we asked ourselves everyday while my dad was receiving treatment. He made all the decisions and we supported him. It was too hard for us to give up…always holding on for hope.
Now that dad has passed, I would say that I am satisfied with the decisions we made. I believe we had him longer with us because of all the treatment. Remember you can control when and how much he gets. That was something we had to grasp. You don’t always have to follow the Dr’s protocol exactly. You have the final call.
My heart goes out to you and your family. It’s wonderful that you have caring and good healthcare.
My dad had a drain and it wasn’t so bad. Just had to watch it when he was in bed and moved. Mom had to sponge bathe him during that time too. But he relieved a lot of his discomfort so it was worth it.
Patsy, I know how difficult this time is for you and your family. I know how diificult those last days and moments are having gone through it with my dad. I pray for peace for you and strength to get you through this most difficult time. When you’re ready we’ll be here …
Magnesium citrate did the trick for my dad too. He suffered quite a bit with bloating and indigestion and burping, no vomiting. I believe you can get it OTC
My father had drains several times and it provided relief and for him it was not a sign that the end was near. The drain did not hurt him. He just had to be careful with bathing and sleeping that it doesn’t come out. But other than it being a nuisance it provided relief.
God bless and I hope you receive comfort soonNovember 28, 2008 at 7:57 pm in reply to: Dad now under hospice care- a chronology of what we experience #23144
Finally getting the courage to write about his last days. I hope this helps someone else out there….
Dad passed away at 8:30pm this evening. He was surrounded by his love of 60 yrs and 3 of his 4 children. The last couple of days have been extremely diffiult. I will come back to write about our hospice experience but for now let me tell you how it went for dad
By Friday 10/3, he was sleeping most of the day. He was able to get up once to sit on the recliner with the help of hospice and my mom and then he didn’t move the rest of the time till he went to bed. He continues to take in fluid and eat very little. His urine output is almost none. He went 16 hrs without one yet he’s drinking plenty of fluids.
By Saturday 10/4 he stayed in bed the entire day. He slept most of the day. He ate almost nothing but was still drinking his fluids. However his ouput was nothing. I believe he finally did 500 cc but that was for a period of over 18 hrs. He occasionally opened his eyes and tried talking but his speech was not understandable which frustrated him. When he did say something it was about something no one could understand. We had a priest visit to pray and do last rites and dad was telling the priest something about a baptism in a large church with 500-600 people. He then opened his eyes to me and started talking about Assisi in Italy where St Francis resides. Told me that it would only be $5 more so why not go. He slept on and off then later started getting restless. Through the night he became anxious, agitated and extremely restless. They had him on very small doses of Ativan.
That night he started jerking movements and uncontrollable hand movements. The jerking movements were like when you first start to go to sleep an you have an involuntary jold in your leg which startles you awake. He had these movements the entire night. Even tried pulling at his shirt to take it off. He would also go through periods of moving his hands like he was picking or rubbing his shoulder, neck face or shirt. That really was a bad night. During one of those startling jolts his jolted his legs off the bed and tied moving his upper body. Thank goodness they caught him and straightened him up and put the bars up on the hospital bed.
Sunday 10/5 he was still restless and his breathing became labor. He could not comprehend things around him. A couple of times when the football game was on he would watch the TV and even call a play (the play wasn’t happening but at least he comprehended that he was watching a football game. His condition became increasing worse. He could not comprehend when was being asked. He continued with the restlessness.
Monday 10/6 he continued with the restlessnes and became almost non responsive. By the afternoon he started the “death rattle”. That carred through the night and never went away. He was being treated with Ativan, oxycotin and something to remove the secretions in his mouth. He slept the night better than he had been sleeping. Still has not gotten out of bed. His urine output was a mere 200 cc. And he had at least 3 sodas, water and a boost milkshake.
Tuesday 10/7 the death rattle was very loud the BP varied from normal to low 84/60, his pulse rate about 120 beats/min. After listening to his “rattle” you get used to the cadence or rhythm of his breathing. You could talk to him and know his could hear even though his eyes were closed because he would squeeze your hand to answer. The hospice nurse didn’t believe us when we told her something had changed. This was during shift change and no sooner than the nurses shift that his blood pressure only had one number…the high number. The nurse told us that this is what happens. It was within 30 mins and dad was gone. We left him alone with mom so that she could talk to him and have her time. It was a very emotional time. Dad had 3 of his kids with him and holding him. We told him over and over how much we loved him and that it was ok for him to go. ….that we would all be ok.
Now after not quite 2 months…I suppose we’re ok but it still very hard. It doesn’t seem real that he’s gone. Today would have been mom and dad’s 49th wedding anniversary. We had a mass in his honor today. We all miss him especially mom. She’s yet to be alone. Someone has been staying with her since dad passed. The holiday season is going to be incredibly hard.
I continue to pray for a cure….
May you fine peace and comfort from your family and those on this site who care about you whom you have provided such wisdom and knowledge.
Here’s the website and the first paragraph I found when my dad was in his last stages. It was very helpful. It’s predicting “active dying”
We have learned the most about active dying from following cancer patients, because their dying trajectories tend to be the most predictable. However, patients with other disease processes can certainly enter a pathway largely indistinguishable from that of cancer death. Morita identified four signs that heralded impending death in 100 cancer patients: the “death rattle,” respiration with mandibular movement, cyanosis of the extremities, and lack of radial pulse. He measured the median time to death from the onset of these signs. They tended to occur in a rather orderly fashion, with the death rattle preceding respiration with mandibular movement (74% of the time), which in turn preceded cyanosis and pulselessness (63% of the time). The median time until death following the death rattle was 57 (+ or – 23, SD) hours, 7.6 (2.5) hours following respiration with mandibular movement, 5.1 (1.0) hours following cyanosis, and 2.6 (1.0) hour following lack of radial pulse.3 (I was struck by this study because until I read about mandibular movement, I had been unable to see it in my dying patients.)
I hope this helps you determine when you want to be there with your autn.
It’s nice that you and your siblings can take turns to visit your aunt. I did a lot of research trying to determine how long dad had so that we can also call in brothers and sisters from out of state. I found a website with the result of a research study conducted on 100 cancer patients to determine statistically what the pattern and the length of time in each pattern was for cancer patients. I was trying to find it but could not find it again. But it was excellent. Dad’s process fell just about exactly into the timeframe outlined in the study. If I find it again I will post it. It was most helpful for planning in these types of situations .
God Bless and I wish you all the best. Just know that you are doing the very best you can and don’t beat yourself up.