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I have a memorial stone in my garden in memory of my father which reads:
If tears could build a stairway
And memories a lane,
I'd walk right up to Heaven
And bring you home again
I have always loved this saying. Now that my husband is battling CC, all of the hospice nurses that come to visit, stop and admire the stone. It is a beautiful saying.
Happy Birthday to your mother. She was born the same year as my husband. Much too young to have to say goodbye.
I agree with Lainy and Holly and I truly appreciate your posts Percy. I have learned so much from you about this cancer. God bless you Percy and keep sharing the knowledge.
Hi. My name is Shelley (aka Shellina). My husband Al was diagnosed a couple of days before Christmas 2012. He made the decision for quality over quantity. At the time they thought he would live 3 to 6 months. Over 10 months later, he is still with me. His biggest problem has been high ammonia levels and confusion. This has now been controlled by Lactulose. However, he also had done a lot of damage to his liver years ago. So, his liver was already damaged before his diagnosis. He also has a stent and an external drain. He still gets around quite well. But, he does get tired easily. I cannot give you advise since it is such a personal decision. I just wanted you to know of someone who chose no chemo and has never regretted that decision. Follow your heart. There are no wrong decisions.
You may want to ask about a compounded cream called ABHR. I rub it on my husbands inner wrists. One of the components is Reglan which is for vomiting and nausea. They give the cream when the patient has a tough time swallowing or keeping meds down. The other ingredients are Ativan, Benadryl and Haldol. It is recommended by many oncologists. I find it to be miraculous.
It has been a really rough day. Actually, it has been a really rough couple of weeks. When I try to talk to the hospice nurses about his confusion, they come over, spend 10 minutes with him and don't think he is confused. I came home the other day and he had totally rearranged everything in the refrigerator. Now all of the jars are in the cheese and lunchmeat drawer. He also placed bottles of pink beverages on a table in the dining room. He was decorating the house with refrigerator items. He can't remember when he last took his meds. He thinks I am trying to keep them from him. I have to keep them locked up. The other day he broke into the small safe I had them in. Thankfully, he didn't take too many extra pills. One morning I woke up and he was asleep in his hospital bed with a box cutter in his hands. He wasn't intending to hurt himself. He had been trying to sharpen a pencil. But, because of his confusion and agitation, it really scared me. I try to hide sharp objects now. He also has a biliary drain bag and he messes around with it. Today he broke a part of it. He'll stand in the bathroom and fool with it and bile drips all over. I am constantly cleaning up after him.
I am sorry to go on and on. I just feel like maybe you guys understand what I am going through. It is such a roller coaster. Don't get me wrong, we have some good days. But lately they have been very stressful. Unfortunately, I have no one to help me. Al's teenage daughter has only seen her dad twice since his diagnosis last December.
Anyhow, I probably have said too much. It just feels good to talk to someone.
Willow, all that the doctor's at the hospital said is that all of the symptoms he had when he went to the hospital were all related to his CC. Apparently your blood sugar can be low because of the liver involvement. Something to do with metabolism. His sugar was increased to 70 or 80 by the time he came home. He remained in the hospital for 2 1/2 days. He came home with a different hospice company because we were really unhappy with the first hospice company. The new hospice company seems to be better.
Unfortunately, Al is really confused and having some hallucinations. He also has his days and nights mixed up. They took some blood on Friday to check his ammonia levels again. We should have results tomorrow. He is also extremely emotional. I am really emotional too seeing him like this. They said it could also be the meds. However, they really have not increased anything. He knows he is confused and he is really tired. He wants it to be over. I feel so bad for him.
He was blessed!
What a beautiful tribute to Jeff. He was very lucky to have such wonderful and caring parents. May Jeff rest in peace and may GOD bless your family at this difficult time.
I had to take my husband, Al, to the ER last night. He was very confused and agitated for the past week. I felt he was a possible danger to himself or me. In my opinion, hospice was doing nothing to help. So, we temporarily revoked hospice and he is inpatient getting some much needed fluids, pain meds, care, etc. He will likely be released tomorrow and we are going with a different hospice company.
Anyhow, the reason for my post is to ask if anyone else had a loved one who had very low blood sugar due to disease progression. Last night in the ER his blood sugar was 43. He is not diabetic and not hypoglycemic. His sugar has always been normal. They have given him glucose and it is now in the 70's. Has anyone else had this issue?
Krish, my husband is end stage CC and he is on 150 mcg of Duragesic patch in addition to Dilaudid every 4 hours. Does your dad say if he is in pain? Another thing to consider is that the patient needs some meat on their bones for the patch to work. Many patients go off the patch at the end because they have lost too much weight.
Thanks for your reply. It's true, he could be anemic. But, they just did a blood test to check for ammonia and I believe they checked his red blood cells too. I am assuming it is likely disease progression. He does not want any treatment. He saw his dad and grandmother suffer and chose no treatment. As for the stent, the one he has is working. It is flowing well into the bag. The hospice doc thinks there may be another duct blocked. He has had stent replacement. He just doesn't want a new PTC with a new stent. He said it was the worst pain he ever experienced.
Hi Lainy, you have sent me the signs before. So, I guess this must be #10, loss of circulation. I just do not see any mottling. His appetite is really decreasing too. I get so confused though because it is such a roller coaster. One day he is doing well. Then the next day he is really bad. Every time I think it's time to take off from work, he surprises me and has a few really good days. When I try to talk to the hospice nurses, they just tell me that no one ever really knows. I understand that. I just want to know if I should be home. Right now he can still get things for himself.
My husband is getting palliative and/or hospice care since March. As some of you may recall, he's had some issues. He is somewhat jaundiced because his stent does not seem to be working as well as it once did. It still clearly is draining into the external bag. But, his doctor thinks the tumor has likely grown and another duct is blocked. Al has chosen not to have another stent procedure.
I recently have noticed that the palms of his hands and bottom of his feet are kind of ashen or gray in color. It is quite noticeable since the rest of the skin has the yellow hue. Has anybody else ever seen this? Whenever I bring anything up to the hospice nurse, they just act like he's doing great. I agree with the positive attitude around him. I just don't have any idea why somethings happen. Also, I continue to work and I am trying to get a feel for an answer from them if it is time to take time off. Every time I feel I need to be home, he rebounds.
Anyhow, thanks for any answers or advise.
My husband had gout a month or so after diagnosis. Thankfully, for him, it was more of an acute case of gout. He no longer has any pain associated with gout. His father had pancreatic cancer and he had severe gout. He always said the gout was much more painful than the cancer
I love the poem Lainy. Between your poems and Pam taking a moment to send me a few words, my heart is filled. I truly feel blessed that I found this website. You all are so awesome.
Thank you for your kind words. I know you just lost your sweet Lauren. Like everybody else I followed your blog and prayed each day for her. I am so incredibly sorry for your loss.
That is absolutely beautiful Lainy! :-)
Thank you all for your responses. Since you have all been through this, I knew I would get the best info and advice. Yes Lainy, could you please email the article to me?
My husband was diagnosed in December and was not a surgical candidate. He made the choice to not have any treatment based on his experience with his dad and grandma who both died of pancreatic cancer.
My husband has a stent with a biliary drain bag. It has been working well. We have had it replaced a couple of times. Lately we have noticed bile seeping out where the tube comes out of his abdomen. He also seems a little jaundice. Has anybody else had a problem like this?
My second question is sensitive. My husband for months has told me he is not ready to die. Today he has told me he is ready and wants to die because he is tired. Someone told me that most people go pretty fast once the say they are ready. I know everybody is different, but has anybody had any experience with this? I hate to see him suffer so much.
We do have hospice coming in once a week right now. They're not saying much as they are always so positive. I just don't know if we are coming to the end. He seems to sleep all the time and has his days and nights mixed up. I appreciate any and all responses and advice.
Yesterday I was going to tell you that it sounds like Cholestramine. My husband took it when he was itching very badly. It helps with binding the bile to whatever she eats for digestive purposes. In other words, it helps with the flow. It is used to treat itching caused by excess bile and it helps with jaundice. My hubby no longer needs it since he now has an external drain for the bile. However, it was a GOD send when he did use it. We would mix it with juice. It is also used for other reasons such as high cholesterol and sometimes for diarrhea.
Great. Thanks for the advice Lainy, Linda and Marion. He seems to be less confused now. But, his hospice nurse is coming by to check on him first thing tomorrow morning.
My husband was diagnosed last December with ICC. He chose to not have treatment based on his experience with his father's pancreatic cancer a few years ago. It was his choice and I fully support his decision. He has done well for the past couple of months. We do have hospice coming in once a week to help with pain meds and his biliary drain. My question is that he seems to be very tired all of the sudden. He slept nearly 24 hours a day for 3 days straight. Last night he was up all night and was out watering the yard at 3:00 am and throwing trash away. These are chores he has not done in months because he cannot do much lifting due to the external drain. He seems to be somewhat confused. Has anyone else had experience like this? I am worried about him.
It's a beautiful song. The lyrics are incredible. But you have to hear it too. The harmonies that these Diamond Rio boys can do are awesome. Lainy I am glad that you put the lyrics here. Now I need to go find my Diamond Rio CD.
I believe. :-) My father passed away in April 2001 from congestive heart failure. I missed him dearly but always felt his love and I knew he left us knowing how much we all loved him. A few years later my precious little Corgi, Stubby, became ill. I had to put him down on my dad's birthday. I was absolutely brokenhearted. Within a couple of days we started noticing that our computer would come on in the middle of the night all by itself. My brother who is an electrician said there's no way it would just restart. My husband and I kept waking up to the glow of the screensaver. I finally realized that it was my dad telling me everything was okay and that Stubby was with him. As soon as I realized it was a sign from my dad, I felt better and the computer never came on again during the middle of the night. I truly believe my dad and Stubby are waiting for me to join them one day.
The group Diamond Rio has a song called 'I Believe'. If you have never heard it, please Google the song or the lyrics. It is a beautiful song.
God bless you, Shelley
My husband was diagnosed with intrahepatic cholangiocarcinoma in December 2012. He started having pruitis in September and his liver function test was out of whack. At first they thought it was his gall bladder and we kept getting sent around to doctors for surgery to remove the gall bladder. Needless to say, it was not the GB. He presented to the ER in early December due to jaundice. They put in a stent and a biliary drain bag and thankfully that has helped him tremendously. Just like your mum, it took two attempts to put in the stent. My husband is only 57. His tumor is inoperable. He was his father's caretaker about 12 years ago when his father was dying of pancreatic cancer. He saw what his dad went through with treatment and my husband also chose no treatment. He felt he would rather have quality of what is left rather than quantity. Right now it has been 7 months since he first started having symptoms and 4 months since diagnosis. Although we have hospice coming to the house once or twice a week, my husband still gets around okay. He has lost about 40 pounds but seems to be maintaining his weight right now. If it were not for the biliary drain bag, you would never know he was sick. Anyhow, we were told 6 to 12 months without treatment. We're already looking at 7 and we're still looking pretty good. I sincerely hope your mum does as well as my hubby has done without treatment. God bless you and your mum.
The hospice doctor came by the house last night to look at my husbands edema. He said the edema is caused by portal hypertension. At this time it is only cosmetic and to elevate the legs when sitting and try to take some short walks. He is hesitant to prescribe a diuretic right now. He wants to wait to see if it goes down with his suggestions. Doesn't really want to add another drug to the already compromised liver.
Thanks to everyone for your responses. I don't know any of you and yet I feel like I have known you forever. This forum is a great support system and God Bless you all.
Posts found: 1 to 25 of 29