Introduction, hindsight
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Hi Nancy,
What a sweet note. Thank you for posting. I’m so sorry that you and your husband are even facing this. I’m so glad for the two of you that you have your time together. I can surely understand why typing that note made you cry. It’s making me cry too.
It’s wonderful you have had your 43 years together, and met when you were kids. I can only imagine all the growing up you did together, and wonderful times, and learning how to be a couple together. My husband and I had that also, and I was so looking forward to being old together.
The two of you are blessed to have one another. Taking care of my husband was an exhausting, chaotic time, but a time that I treasure so much. It was a sacred blessing to be with him.
I know this is very hard, but I can’t help believe that your memories of now will later be reassuring because of the conversations you’ve been able to have.
Like you, I believe I’ll join God in heaven too, and the fact John is there already makes me look forward to being there.
I’m wishing you all the best, and peace and comfort for your husband. Please continue to let us know how you are doing. I send a warm embrace to you and your husband from the depths of my heart.
MargaretMargaret. God bless you and your family. My husband has terminal CC and was given 6-9 months at time of diagnosis three months ago. We have hospice care now. I feel so bad that you didn’t have a chance to say good-bye. My husband and I talk about what things will be like after he is gone. It is very hard but he finds it comforting that after 43 years I will probably be able to go on without him. I am crying as I type these words because we have been together since we were kids and I don’t remember much of my life before him. But like Lainy, we are very spiritual people and believe that we will join God in heaven when we die. But my silly guy tells me all the time that I should look for signs that he is here with me after he dies. And I surely will. Take care. Nancy
Margaret….100 Questions & Answers About Biliary Cancer written by Dr. Ghassan K. Abou-Alfa, and Dr. Eileen M. O’Reilly (husband and wife) and funded by the Cholangiocarcinoma Foundation may help you in the quest of understanding this disease. Please know that it is free for download.
http://cholangiocarcinoma.org/bookorder-ebook.htm
Hugs and love,
MarionMargaret,
I missed these earlier posts. I think we were at my in laws, who don’t have internet. I’m so sorry about the sudden loss of your husband, John. I ran across something you posted tonight and looked at your earlier posts.
I have to tell you, you are the first person I’ve seen here from the Dallas area other than me.
While I haven’t lost a spouse, I lost my 48 year old brother in March 2011, very unexpectedly. Not cholangiocarcinoma, but, unknown to us, he had been diagnosed with type 1 diabetes (in his 40’s). Unknown to him, he had acute pneumonia and the combination was fatal and fast. I had a police officer show up at my door to tell me he had been found dead in his home in Lake Tahoe and we had to wait on his autopsy. I only tell you this to say that I understand sudden, unexpected loss and the completely unreal ways your life changes as a result.
Several things helped me walk through those early days. One, a friend told me grief is a process, not an event. That is so so true. Second, I did have signs from him and I believe they were to let me know he was okay. Third, it helped me to talk about him, a lot.
So, if you ever want to meet for coffee and talk, I am here. I’d be happy to meet you at a mutually convenient place. Your husband was only two years older than me.
Lisa
Amen to that Lainy.
Margaret, if you stick around you too will know more about this disease with the strange, hard to pronounce name than you ever though you could or would want to know. I do think it is unique in so many ways from other cancers as you never know what to expect. How it will act or react to anything. It is very unpredictable. Not only is the cancer a roller coaster ride, your grieving will be too. With many ups & downs. It goes with the territory. I am beginning to see that many of us that have dealt with this more than likely have a form of PTSD. What we went through and are going through is about the most traumatic thing I can imagine.
The good news is that in the 5 years since my husband passed away I have seen much improvement in both diagnosis and treatment of CC. There is more knowledge, better treatment and also more successes. Unfortunately it comes too late for our husbands, but hopefully will help others in the future.
Hope your 12 year old feels better soon.
Love & Hugs,
DarlaMargaret our roller coaster was named because we can be on the highest high and then drop to the lowest low in diagnosis, treatment and outcomes of scans and oh, just everything to do with CC. I always say CC is only for the brave and the strong. No matter what though this is the most caring, loving, kindest, bravest and smartest club (family) the world over. From patients to caregivers no one is ever too busy or too ill to help another member. I truly believe that if we ran the world what a glorious place it would be.
Hi to all of you who have replied. You are all such wonderful, loving and caring people. It brings me to tears to read the messages.
Thanks to those of you who are diagnosed with cc. You are very sharing that you reach out to me. Strangely, this disease hit my husband so hard and fast, I don’t think he even actually knew the official name of it, or if he did, he hadn’t had any practice saying it, nor did I. My husband also had a very bad case of ascites — another word I don’t think he knew, nor I. I’ve only this week begun to read about it.
As I may have mentioned, I’m now trying to read these forums to figure out what happened to John (I don’t think it’s right for me to claim his battle as my own — my wonderful husband is the one who paid the ultimate price and was so courageous and brave through all of it. My challenge through this has been a different one.)
Cathy, the PTSD has been an enlightening comment — I hadn’t thought of it that way. But I think it’s absolutely true. I’m happy for your success in battling cc!
Also, Clare, I definitely don’t think your comment to get help with the medical records is patronizing. When I read the forum messages and see how much knowledge all of you have about your cc or that of your loved one, I’m just amazed and very impressed. My husband and I didn’t know any of this, and he was a very intelligent, well-read person.
Darla, Lainy and Marion thank you too. And Mary I am thinking of you with your husband’s recent diagnosis and your young sons. I’m asking God to wrap his arms around your family.
When I was so in shock trying to help my husband and not even knowing who I was or what was happening, I tried to tell myself that my hands were those of Christ’s — I just let him take over my body and use it for the loving care of my husband. Some days that was the only way I could function. I know I must sound crazy. But that’s the way it was.
One question about a common theme that I see in these posts — cc is a roller coaster. Why is that? I can honestly say that’s how it was for our family. I told my sister one day that every day brought a fresh round of chaos. Do other cancers not behave this way? Is this unique to cc?
Again, thank you for your love and caring. You are in my prayers!
Must go and help my 12-year-old who has a cold. ~
Margaret
Margaret,
I’m so sorry to hear what you’ve been through. My heart goes out to you and your family. I can relate, as my husband, John, is 54 and officially diagnosed on November 1. We also have young children – 9 year old twin boys. We are currently exploring all treatment options, clutching onto any ray of hope we can find. This disease is so terrible and so quick, it does make your head spin.
I just wanted to welcome you to the site and add my support and love to that of the wonderful people here. Feel free to email me if you’d like to talk.
Mary
Hi Margaret,
Welcome to the forum although I am so very sorry to read what you have gone through. I’m not surprised you have so many questions after such a short space of time. Can I suggest if you are going through medical records that you have someone that can take the time to explain what is in therefore and translate it all into terminology that you will understand. I don’t mean to patronise you by saying that but medical jargon is a whole other language and when giving information it has to be given in a way that you will understand, not the medical professional giving it.
Margaret, Welcome and sorry you had to find us. This site is amazing because people get it, people who haven’t “walked a mile in our shoes” think or try to get it but real can’t grasp how CC takes you from normal to hell in moments. Sometimes it is hard for me to post on this site because I am 7 months from my 5 year cancer free mark which means I won while so so many aren’t. The reason I am posting is because of your comment about “like a bomb exploded and life keeps going on”. Surviving cancer should mean sunshine and lollipops but life isn’t as simple as it should be, so I sought therapy and it was such a major help. My therapist after crying and being in a state of awe over my story, held my hand and said “Cathy you have PTS, what did you expect “. Margaret, I can’t express enough how much talking to some one who really had no majic pill or cure helped, because she got it. Margaret, I have a feeling you would have the same diagnose.
Margaret my heart breaks for you and and your family, and I can only offer my prayers, love and support, keep posting.
CathyLainy,
I for one do not think you are an “old nut”. If you are, then so am I.
Like you, I also take a lot of comfort in knowing that I had something a lot of people never had or will have in the relationship that Jim & I shared for so many years and for that I am grateful. However, that said, I will repeat what I have said many times before. I just wanted more. Selfish huh?
Love Ya,
DarlaMargaret….You already have received a warm and loving response from Lainy and Darla. I too would like to welcome you to the club no one wants to belong to, but is glad to have found. Time does not take away the pain of the loss however; time does allow us to accept it better. So glad that you have found us.
Hugs,
MarionMargaret,
One more thing we have in common. We too were in shock and at first didn’t see what was actually happening and how swiftly things kept changing. We didn’t get to say a proper goodbye either as we thought we had more time.
I too am a believer and have had many signs as has one of my sons and also Jim’s twin brother. I have started an introduction and some notes and plan to have enough for a chapter in Lainy’s book and hope you too will participate. It is comforting to know they are always near us, isn’t it? The signs are their. We just have to be open to them.
My heart goes out to you and your family. Take care.
Love & Hugs,
Darla
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