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(27 replies, posted in General Discussion)

Hi Percy,

I agree with everybody else, we miss hearing from you. Please don't shy away from hospice. My husband has been on hospice. Believe it or not, he has been on hospice for a year. They have been a GOD send! We have met some lovely nurses and never have we felt that we lost our freedom. I have been able to keep working. We have a choice as to how often they come and what services we need. Please keep it in mind.

I think of you often and wish you the best.

Shelley (aka Shellina)

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(5 replies, posted in Introductions!)

I just wanted to add "God bless you for being a hospice volunteer". My husband is in hospice and we are ever so thankful and grateful  for all you do. I am very sorry to hear about Gail.

Has anybody ever seen an external drain bag fill with air? My husbands drain is still putting out bile into his bag. However, the past day or two air is also getting into it and it fills up like a balloon. When I researched this, I found something called pnuemobilia which appears to be air in the biliary tree. Anybody else ever see this?

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(20 replies, posted in General Discussion)

My husband has external drain too. I agree with what has been said by Lisa & Betsy.  But, I wanted to add that the sure prep pads are miraculous! I also highly recommend Micropore tape. My husband suffered with his skin breaking down for about 9 months due to the bile and tape. Both can really do a number on your skin. All it took was one caring hospice nurse to see how bad it looked and she made sure he had the sure prep pads. Unfortunately our hospice pharmacy doesn't have the Micropore tape, so I have to buy it. But, it is well worth it. No skin problems ever since.

When I was reading your post, the first thing that came to my mind was Lauren. I thought it sounded like her surgery. I agree with Pam that another opinion would probably just confuse you and your mum. I also agree that you may have to go with your gut. My thoughts and prayers are with you both.

Hi Danielle. My name is Shelley. When I read your post, I just had to write to you. I am so impressed by your maturity at 19. Your father has had a rough couple of months. But what an incredible ambassador he has in you! Don't let anything the doctor says bring you down. Use it to keep fighting for him. My husband has CC too. He's a little older than your dad. The doctor's had a tough time diagnosing him too. It's a hard one to figure out. I can't help you with advice as to where he should treat because I am on the other coast. But, I want you to stay strong for your dad. As you'll see on this site, there are many people who do very well.

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(9 replies, posted in Grief Management)

Beautiful poem. Also, I encourage everyone to read the book. It is a wonderful  book.

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(14 replies, posted in General Discussion)

Hi Michele, I am so glad to hear the ABHR cream worked. As I had said before, it worked wonders for my husband.

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(14 replies, posted in General Discussion)

They gave my husband ABHR cream. It is a compounded cream made of Ativan, Benadryl, Haloperidol & Reglan. It works really well on nausea and vomiting.  You rub it on your wrists. It works on the different brain receptors to help with nausea. It is very common with oncologists and hospice. It was a god send for us. Ask the hospice nurse. Best to you and your husband.

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(11 replies, posted in In Remembrance)

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.

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(14 replies, posted in General Discussion)

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?

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(24 replies, posted in Introductions!)

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.

Hi Marion,

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.

Shelley

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.

Hello all,

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.

Shelley

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(4 replies, posted in General Discussion)

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

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(27 replies, posted in Thought for the Day)

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.

Shelley

Pam,

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.

Hugs, Shelley

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(27 replies, posted in Thought for the Day)

That is absolutely beautiful  Lainy! :-)