Recently diagnosed Grandmother
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Dear Derik, I am very sorry about your Grandma but how fortunate and beautiful that you got to share thoughts and love with her at the end. That is so very special and I believe that by telling her you love her and it was ok to go, you actually released both of you. Yes, I also believe she will always be around you. I am posting a list of Signs a Loved one is around you and usually a beautiful dream will occur first and it is merely Grandma showing you that she is healthy and happy.
After loved ones cross over, they are anxious to let us know they are okay and are aware of what is going on in our lives. If we are not able to feel them around us, they will often give us signs that we cannot ignore. The person who is given the sign usually knows he or she is receiving a message from the other side. You do not have to look for signs – the signs will come to you.The signs our loved ones give us most often are:
They come through as an animal. Our loved ones are able to use their energy to go inside of an animal, such as a butterfly, ladybug, bird, or dragonfly – for a brief period of time. The animal does something it usually would not do, such as land on us, peck at our window, scream at us, etc.
• They place common objects such as feathers, coins, or rocks in our path. Our loved ones like to place things over and over again in our path that were significant to them.
• They give off fragrances. We can often tell our deceased loved ones are around us when we smell their perfume, flowers, cigar or cigarette smoke, or any other familiar smell they had. There is usually no logical explanation of why the smell is there.
• They make songs come on at the perfect time. We know they are around when their favorite songs come on at the right time with the exact words we need to hear.
• They come to us in dreams. One of the easiest ways for them to come through to us is in our dreams. All we need to do is to ask them to come, and they will. However, we should ask them to wake us up after they come, or else we will not remember the dream. A dream that is a true visitation will be very peaceful and we will know it is truly our loved one. We will remember this type of dream in detail many years later. (On the other hand, a subconscious dream may be frightening or feel bad. This type of dream is not your loved one.)
• They allow us to feel peaceful for no reason. When our loved ones are in the room, they usually make us feel so loved and at peace. It usually happens at the most unsuspecting time, so there is no logical explanation for our sudden bliss.
• They place thoughts in our head. Because they in spirit form, our loved ones don’t have an audible voice. Therefore, they give us messages telepathically. Pay attention to thoughts that just “pop” into your head.
• They love to play with electricity. They turn electricity on and off. They like to flicker lights, turn the television and radio on and off, and make appliances beep for no apparent reason.
• They make buzzing noises in our ears. Because our loved ones speak to us on a different, higher frequency, we may hear ringing in our ears when they are trying to get our attention. This is a sign telling you to listen to what they are saying.
The list can go on and on, but these are the most common ways they let us know they are around. If you haven’t received any of these signs, simply ask your loved ones to come to you to let you know they are okay. Be patient .Derik…so sorry to hear of your dear grandma’s passing. She will never be forgotten in our hearts and on this site.
May your heart begin to heal …..one day at a time.Hugs and love,
MarionDear Derik,
I am very sorry indeed to hear of the passing of your Grandmother. Please accept my sincere condolences and know that right now my thoughts are with you and your family. And please know as well that we are all here for you also.
My best wishes to you,
Gavin
Derik,
I am also sorry for your loss, but glad the family got to spend time with her. It takes courage to share and thank you for joining our forum. It’s wonderful you had part of your life to share with her.All the best to your family.
Dear Derik,
I am truly sorry for the loss of your grandmother to this cancer. However, the love your family had for her is a true testament to what a wonderful woman she was. Thank you for sharing with us.
My thoughts and prayers are with you and your family,
CatherineDerik,
I am so sorry you have lost your dear grandmother. You have my deepest sympathy. Thanks for sharing the experience with us. It sounds as if her last days were spent with those who loved her. I am sure she could feel all the love around her and her passing was peaceful and pain free. She will always be near you in spirit and in your heart and memories. Yes Derik, one day you will all be together again. My thoughts are with you and your family at this sad and trying time.
Hugs,
DarlaHi there everyone! Sorry I’ve failed to update this post regularly. As I’m sure you all know, this disease (cancer in general) is exhausting.
Sometime last month, my grandma was readmitted to the hospital for weakness and shortness of breath. It was found that she had pneumonia and was septic with renal failure. She was intubated and sent to ICU. It was found that the site of infection was through the drains placed for her bilirubin. Miraculously, grandma hung on and made it through 5 days in ICU where she managed to be conscious and intubated at the same time…something that is not common!
At that point we discussed with our oncologist that they had nothing further to offer her. It was advised that we seek hospice, which we did. Our plans to head to MD Anderson in Houston were cancelled. She was discharged to her home with hospice supplying a bed, oxygen concentrator, and other supplies. We, the family (mostly my Mom and aunt) took care of her every single day since then. About a week ago we were told by hospice that they were estimating she had about 2-3 weeks left. Yesterday (March 31st) they came back to check on her and said they didn’t believe she had much longer than 24-72 hours. Grandma was surrounded by loved ones the entire day, with support from both friends and family. Sometime in the late evening she started to become unresponsive, still breathing, but not responding to anyone or acknowledging actions. We surrounded her in a prayer circle and each had our time to tell her what we needed to tell her. I’ll leave the specifics between her and I but I did share with her that it was okay to leave us, that we would continue on, and that we would see each other soon again. A couple more hours passed after this and I nestled my head next to hers to share more words. I let her know how much I loved her and how much she meant to me, I could feel a little movement from her head but didn’t think much of it until I asked her to squeeze my hand. I’d asked her earlier with no response. This time, I was surprised by a strong grip of my hand with hers. That was all I needed to know she was still there, in one way or another. We left her to be with her daughters (my mom and aunt) around 11pm and was unfortunately met with a phone call around 1am that she had passed. My aunt and Mom shared that my Grandma came-to before passing, sat up, and attempted to speak. My aunt assured her that it was okay to go and that everyone loved her. I believe she was looking for permission.
I can honestly say that I’m truly at peace. The encounters I’ve had with death in my life have all largely been sudden and unexpected. Grandma’s was a process and hard to watch. And while I’m sad, upset, and miss her like hell…I’m at peace knowing how blessed I was to spend my first 25 years of existence with her here on earth. She’ll now get to see firsthand the impact she has on all of us as we tell stories and pass on things we’ve learned from her to our own kids.
I look forward to seeing her again. For now, I’m excited to carry on her legacy. I know she’ll be watching and directing me from somewhere up above.
Thank you all for allowing this to be a place for thought sharing and support. I’ll continue to support the foundation in any form that I can.
Derik…..great to hear of the scan results. I assume that Tuesday’s meeting will include information re: disease stage.
Numerous members are covered by Medicare. I hope they will chime in and help us understand cost related issues.Hugs
MarionThank you all for the timely responses. To Marions: the ERCP was unsuccessful due to the blocked bile duct. This prevented the gastroenterologist from getting any sample. The interventional radiologist explained that he “brushed” the area during the second drain placement. As he said, its like taking a brush and doing so blindly as they’re not sure where the tumor is while they’re in there. I keep hearing biopsy and brushing used as the same term but always thought as you stated…that a biopsy is actual removal of tissue while brushing are simply just that.
Anyways, we have our first appointment scheduled for this Tuesday with the oncologist at the Cancer Center. I’m eager to hear what he says and will relay the information here. The second CT of chest and abdomen showed that the cancer hasn’t spread and is localized.
I also wanted to ask quickly about something that I’m sure is very popular…money. She’s on Medicare so as I understand it, it will be the 80/20 rule? She pays 20% while the rest is covered? Can anyone give approximate costs of various types of treatment? Thanks as always!Derik,
Personally, I think the external drains are a good thing. They may try and place a stint across the blockage by come down from where the drains are. Long-term it’s important that they get the liver to drain through the bile duct, short-term I doubt its a big deal.
My mother’s blockage was the toughest to get across that are IR doctor had ever come across. It took almost a year’s worth of attempts to finally get a drain to work properly, but when it did she felt much better.
I don’t know your grandmother specific situation, but what I would tell is do not take anyone’s word as definitive when it comes to surgery. Just because one person tells you surgery is definitely not an option, doesn’t mean another surgeon won’t say it’s totally operable. I saw it firsthand.
If the cancer hasn’t spread, you need to ‘shop’ this case around to many surgeons. From my ignorant point of view, surgery seems to be all about the confidence and experience the surgeon has. And its not like they advertise that they have a lack of either. Time is of the essence.
Good luck.
Joe
Derik…welcome.
I am wondering: you are mentioning biopsy and brushings. The latter is done via ERCP, however biopsy is removal actual tumor tissue. Has this been discussed as well?You may also want to take a look at the information provided by us for those newly diagnosed.
http://cholangiocarcinoma.org/newly-dx/Hugs
MarionThank you for the welcome, Lainy! We reside in northeast Kansas, specifically the Topeka area. She is currently at Stormont-Vail Healthcare (where I actually work, I’m currently in respiratory therapy school). It’s a very good hospital, a Magnet hospital partnered with the Mayo Clinic. There’s also the University of Kansas Medical Center just about an hour east of us that’s pretty universally recognized as well. I’ve looked online at the John Hopkins Tumor Center as they have lots of information and diagrams online. Thanks for any help!
Dear Derik, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Grandmother and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma as it is still very rare. Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
My husband began his journey at 73 yrs. old and was able to have a Whipple surgery and fought the good fight for 5 years. His CC started in the same area that your Grandmother’s is. Because of all her side issues I would definitely seek out another opinion from a Hospital who has experience with CC.
May I ask where you live and perhaps we can then give some suggestions where you might get another opinion. It is a good thing that they did put in stents as that is the only way to give her relief from the jaundice. Please do keep us updated on your Grandma’s progress as we truly care.Hi all! My name is Derik and unfortunately I found this board due to the recent diagnosis of my grandmother. We took her in this last Thursday (Feb. 2) due to jaundice. A CT scan showed a mass close to the pancreatic head and likely inside the bile duct. The ER doctor was able to give us the name of this form of cancer while still in ER. And while the oncologist has said his suspicion is cholangiocarcinoma, he can’t make a definitive diagnosis without biopsy. That same night we went into ER, she had an ERCP done. The bile duct was too blocked so this procedure was unsuccessful. Interventional radiology was consulted and a drain was inserted between her ribs and into the liver to drain her excess bile. Yesterday we had a second drain placed that comes out just above the umbilicus. During this second procedure they were able to get a brushing for a biopsy. However, it was explained to us that the yield is typically pretty low. If the biopsy comes back inconclusive the oncologist has stated we will treat it based off of his suspicion and the scans themselves. General surgery has already ruled her out for invasive surgery and transplant due to her age (76) and status as a COPD patient and smoker for 60+ years. I was lucky to find this board and read many amazing stories over the past few days. What I’m looking for is any advice, questions to ask the doctor’s, possible treatments, treatment centers, and people’s general opinion. Thank you all so much for you time!
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