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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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It's been six weeks since Dan died. I returned to work last week with mixed emotions. I thought it would be a good distraction and keep me busy but the fact is I just want to be in our house with our dog.
I miss him so much and the reality of never seeing his face , hearing his voice and feeling his touch is devastating.
I just can't understand how this could happen to us, Why our time together was cut short.
It's hard to be at work where people don't understand
that my life has forever been altered. I'm just going thru the motions. I don't care about what's going on around me. I know in time that will change but maybe I don't want it to. If I start to feel normal, maybe ill forget and I don't want that to happen.... Anyway I'm just rambling. It's been a rough few days.
Jen , my husband had mets to the spine and had terrible pain. After trying many different options he finally went on methadone with oxycodone for breakthrough pain.
Sorry for what you are going thru. Sending Hugs of support your way.
How beautiful. Congratulations to all of you. What a wonderful way to start the new year.
Lynn, it sounds like you had a beautiful service for George. My thoughts are with you.
Oh Lynn, I'm so very sorry to hear about George. I lost my Dan only 2 weeks ago so I know what your going through. You were a wonderful caregiver and did everything you could to make George's last days good ones.
I'm hope you find the strength to get through these next several weeks and try to remember George as he was before this cancer took over your lives.
On November 29th at 4:45am my beautiful husband passed away. We shared an amazing wonderful life together . Dan was an extraordinary man: loving, kind, honest and honorable. He was a devoted husband, brother, son and friend. He changed my life for the better and will remain in my heart forever.
Thank you darla and thank you lainy. Lainy you can email me.
Dans sisters are here . They are all very close. He's in and out but he knows they are here. I will continue to talk to him.
Dan has been sleeping a lot this past weekend and this morning I wasn't able to wake him. He's been a little responsive but only for seconds at a time. The nurse was here and thought it might the increased dose of methadone but I don't think so. I just want him to go peacefully. He's twitching a lot. I've been giving him morphine and ativan.
I never expected this day to come. Who will I be without him?
Hi Lainy, Your so right as long as we were together it was a wonderful thanksgiving. I saw that your holiday was exiting!!!
Marion, thanks for thinking of us.
Happy thanksgiving everyone. I'm thankful for this website and all of the caring people that share their stories and advise. Dan is too Ill to get out or to have company so were having an intimate dinner for 2. Hopefully my cooking won't make him worse LOL!
Oh!!! Wish I could get an electrolite drip for myself. Haha
Enjoy it Lynn.
Hi ilias, sorry to hear about your mom. I hope she can get back to her chemo regimen soon.
We went back to the dermatologist this morning because of the new rash and she diagnosed eczema as the underlying condition. Eczema rashes often develop into staph. So now he is on a topical steroid as well as the Bactroban. We ran it by hospice and we are on the right track.
I'm feeling a little less freaked out about it after talking to the doctor.
Just another obstacle to overcome while waiting for the next one
My husband has had a strange looking rash on his knees, elbows and wrists for awhile. Hospice couldn't identify and gave us several creams to try and nothing seemed to work. After a week or so of this I made an appointment with a dermatologist and she diagnosed MRSA.
He's been using bactroban for a week now and the rash on the knees, elbows and ankles and wrists is drying up and flaking off.
However today noticed some new marks on his feel that look like scratches.
Not sure if this is the Mrsa spreading or not.
has anyone had MRSA? How long did it take to clear up?
It's been hard to care for Dan because he's so concerned about passing the infection to me that he won't let me touch him. Yet he's not capable of caring for himself.
I'm at a loss , should he go into the hospital until it clears up.
Any insight would be helpfull.
Our power has been restored!!!! What a relief to be back in our own home. Even our dog is happy. She jumped up on our bed and went straight to sleep.
Thank you all for the kinds words of support. The hospice nurse was here today and thinks his confusion was because we were notnatnhome. She says lots of patients on high doses of narcotics have similar issues and need to be reoriented. He's now more clear headed but his emotions are high.
Marion, thanks for the suggestion About hepatic encephalopathy. I'll look into it.
We got hit pretty hard in westchester county, 20 miles north of manhattan. Although there was no damage to our house dozens of trees came down knocking out power in my neighborhood. Lots of trees fell on houses. But luckily no one was hurt. We've been without power since Monday. After 2 nights in a cold house we decided we had to leave. Every hotel within 30 mile radius was booked. My nephew generously agreed to give us his apartment which happens to have power and is staying with friends out of state.
It's been very challenging with Dan. We had to move the wheel chair, oxygen and all his meds. He is also very distraught and stressed. I'm not sure if it's the weather or if it because we're not in our home but his emotions are running very high and I'm wondering I'f maybe because the disease is progressing and he closer to the end.... Last night he woke up and asked me about my house and I told him its our house and he couldn't remember it and got pretty upset. I finally walked him thru the layout of our home and he remembered after awhile. Could it be the meds? I've never seen him this confused. Today he is better but still very emotional. We also found out today that rash on his knees , elbows and wrists is MRSA. He freaked out because he thought it was the flesh eating bacteria and he didn't want to die this way. He wants to die peacefully. Oh God , This has been the worst week since diagnosis. My poor Dan . We just want to go home!!!!
Wow, this is the longest postnive ever written. Have a peaceful night.
Dear alla, I'm deeply sorry for your loss. My prayers are with you and your children during this difficult time.
Hi Lynn, my husband is on hospice at home and I can tell you that's it's a huge relief to have them involved. We hav 1 dedicated nurse and she has done a tremendous job in helping to keep Dan comfortable. Also you can call them 24/7 for help. Before I felt that I was in limbo and all alone making every decision.
I'm sorry for what your going through. Sending you lots of hugs of support and strength.
Hi Alla, constipation was a huge issue for my husband. It was the reason for one of his hospital visits. Suppositories, enemas and that colonoscopy drink didn't work. The hospital gave him go lightly , senna and a ducalex suppository and it worked. Now he is on 6 senna a day and miralex daily and no more constipation. I think its a matter of finding the right cocktail that works.
I'm happy to hear the dilaudid is working for him.
Pain control has been a huge issue for my husband as well. He was diagnosed in October 2010 , Stage IV with mets to the spine, omentum, lungs and liver. He was addmitted twice to the hospital to get the pain under control and also was seeing a pain specialist. He is now on hospice and taking 60mg 3 x daily of Methadone, 90mg every 4 hours of oxycodone and neurontin for pain. The pain never seems to go away but is mostly at 5 which he says he can tolerate.
I know how difficult it is to watch them suffer and writhe in pain. It's been the hardest thing for me to deal with.
If the methadone doesn't start to work I think morphine is the way to go.
Just the opionon of a fellow caregiver.
Good luck and keep us posted.
Lainy , what great news. I'm so happy for you. You've been through so much and yet continue to provide support and strength to others .
Thanks ladies. Lainy we called hospice in about 2 weeks ago. They are great so far. It's such a relief to have someone to reach out to 24/7. The nurse that is assigned to us is incredible. They've made adjustment to his medications that have already helped to reduce his pain.
Fractures are very common with bone mets. He has several rib fractures. The one in his shoulder blade is unusual.
Marion, I remember reading some of Jeff's entries on mets. I will take another look at the links for anything that may help.
The cat scans showed multiple fractures in the scapula caused by new tumors. Unfortunately radiation to shrink the tumors would be too dangerous so the only resolution is to increase the pain meds and imobilize the arm.
Dan is home now and resting. He is definately declining. So, starting next week I will be on family medical leave from work. This will be the first time in over 30 years that I haven't worked everyday of the week. It will be strange but I need to spend time with him.
thanks everyone, we're in the hospital and had 2 cat scans. hopefully the mystery will be solved tomorrow.
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