My Husband and Cholangiocarcinoma
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Great news, Margaret. Sounds like positive things are happening for Tom. I completely understand about burning the drain tube stuff – I told my wife’s surgeon to please stomp on the tumor he removed from her liver, or give it to me and I’d stomp on it. I was mad a that thing!
Keep on believing …..one day our grandchildren will ask us to tell them what it was like in the old days when people had something called cancer! Just like we asked our grandparents to tell us about polio.
Jim
Margaret…I love your side note. Bili down to 3.9 and tumor makers below 100. This is headline news. Keep it coming.
Best wishes,
MarionJim and Darla: There is nothing wrong with obsessive sentimentality disorder. I will most likely have it some day also! I think I even have a small touch of it already. I think the slide show of pictures set to music is an awesome idea!
On a side note, Tom went to his doctor visit today and his bilirubin level is down to 3.9 and his tumor markers which were well over 300 seven weeks ago are now less than 100. His doctors comment was “Wow, this is the best your color has ever been!”
So we’re all prepared for his surgery (internal stent placement) tomorrow and Tom is going to tell Dr. Dempsey that the people with him are his “Lynch Mob” and he (the doctor) won’t make it out alive if he doesn’t get that stent placed. At least he still has his great sense of humor!!
If the doc is successful, I’m telling him that I want the drain tube and drain bag cause we are having a tube burning party at the campground this spring and we’re throwing that thing into the FIRE!!! Party on!! (That’s what we did with the last drain tube) We have to follow tradition!
Go with God and KEEP KICKIN’ THAT cancer!!!
Margaret
Jim,
What a lovely tribute to your wife and your life together. I have pictures of Jim all around me and looking at them makes me smile and sometimes still takes my breath away. Yes, I believe, like you, I also am afflicted with obsessive sentimentality disorder.
Darla
Darla and others who have lost a loving spouse:
After losing my wife in November, I needed to do something significant and personal to preserve all the wonderful memories of our life together. So, I went through the house and got every picture ever taken with my wife in it. I laid them out on the floor, all in a single row, and organized them as close to chronological order as I could determine. There were 120 photos altogether. Then I took them to a photo studio where they inserted them one by one into a computer, and transferred the entire portfolio to a DVD. I had picked out 6 songs that were particularly sentimental for the project. These six songs were then dubbed over the photos and timed to end as the last picture ended. The result was exactly what I had hoped for. Its basically a pictoral history of our married life from beginning to end, with beautiful music accompanying. I can finally get through it now without crying a gusher. It has meant a lot to me in the healing process, and I reccommend it to anyone who is similarly afflicted with obsessive sentimentality disorder like I am. Smiles to you, and keep kickin’ cancer…..Dear Cindy….Do not feel intimidated by asking questions. In fact, you might want to have some written notes beforehand. When speaking with a physician, I made a habit of taping the entire conversation. There simply is too much information coming our way. Be an informed patient advocate. There is power in knowledge and we need this empowerment in order to make informed decisions. Hang in there.
I am also enclosing a few previous postings referring to Canada.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=21865
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3373
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=26456Alberta:
Medical oncologists: Dr Heather-Jane Au
and Dr Patricia Tang.
Surgeon: Dr Oliver BatheBest wishes,
MarionThank you Lainy, Marions and Gavin,
I couldn’t have imagined how wonderful it made me feel to receive responses to my post. It really moved me. It is amazing how we can feel so alone going through something as difficult and devastating as this – the knowledge that there are others out there in a similar situation is oddly comforting. Thank you for your suggestions and warm wishes – it really help me get through my evening last night.
We are in Montreal Canada. I’m trying to get information as to who else is an expert in this area of cancer. Our doctor – Dr. Matrakos (Royal Victoria Hospital Montreal) – is suppose to be one of the best up here. Everyone who here’s that he is our doctor say that we are lucky – I guess I’m not feeling the luck just yet.
It is amazing how intimidating it can be to try to ask questions or push for answers. I’m not someone who generally has a difficult time asserting myself and despite having higher education and a good understaning of human biology – it is still difficult for me. For my mom – it is even more intimidating and I think there’s a fear of upsetting the doctors and not getting good care.
thank you again…..I’m so happy that I found this link and now feel a part of what you call your “family”.
CindyHi Jim,
Thank you for sharing your story. It brought tears to my eyes. It is so similar to mine except that we were not as fortunate as you to have the time you were given. My husband Jim passed away less than 2 months from when he had the first sypmtoms that anything was wrong. We were given the CC diagnosis a week before he passed on. You were so fortunate to have that extra time together and it sounds like you made the most of it.
I truely understand your pain & loss. Losing the love of your life, your soul mate, is not easy. I tell people that Jim & I were fortunate to have had more than most, but I am selfish. I wanted more!
However, if more meant that he would have had to continue to suffer and be in pain, I am happy for him that it went quickly and that he is now in a better place where there is no pain & suffering. Our loved ones will always be with us in our hearts and memories.Keep coming back. The loving support on this site and the ability to hopefully help others does help us heal.
My heart goes out to you, as I share in your loss. You are in my thoughts and prayers.
Darla
Jim,
I have to say your story touched me deeply. I lost my Mom to CC on April 3, 2009. She and my Dad would have been married 58 years on April 27th.
I diagnosed my Mom (I am a Cytologist) and also insisted she be treated at Duke. At the time of her diagnosis she was still working full time in the Planning Dept. at Guilford County at the age of 76. She had a bout of pleurisy and a CT scan was done to r/o a possible blood clot. They saw the lung metastatis and then found the CC in the liver. She was stage IV with mets to the lungs at diagnosis. You can read my story under the posts “Cherbourg” using the search function.
Your post brought back so many bittersweet yet beautiful moments I saw shared between my Mom and Dad. They became “sweethearts” in 8th grade and as I said were married almost 58 years. Our family has a deep and abiding faith. My parents were very active in their church and my Mom faced her diagnosis with courage, humor and much faith. I was humbled to witness how she dealt with her illness.
I welcome you to this board! Please come back often! It’s nice to have another fellow North Carolinian here!
Hugs to you and your family!
Pam
Jim,
Your story is so poignant and eloquent. My mum said to me recently that she and my dad have already had 35 happy years, which she wouldn’t swap for anything. I will show her your story and hope they can make the next times the happiest, as my dad comes to terms with his disease.Cindy, you should be so so proud of your dad – when my dad was in the hospital it brought tears to my eyes as he thanked everyone who came in the room, would ask the nurses about their families, and would wait hours sometimes in pain or uncomfortable, if he thought the nurses were too busy.
These are the people the nurses do the job for, and I’m sure your dad’s carers will have a fondness for him that makes them do a better job. Please start to demand some answers – doesn’t come naturally I bet you’re a lot like your dad! I had to write all my questions on a piece of paper and then take notes as they answered them, even asking the nurses to call the surgeon back if I didn’t understand it (sometimes they’d roll their eyes but believe me it’s better than spending another sleepless night wondering what they meant by ‘probably’ or ‘could be’…)
My thoughts are with you
Katehi jim, ….as i read your story it brought back many memories of the 41 years (they were always there just darkened by current events) that i have spent(and fighting and hoping for alot more) with my lucille…through good times and bad standing tall side by side, we welcome you …..lucille and ron
Thank you, Marion, Lainey, Gavin, and Margaret for the kind words. You know, I’ve only been on this site for one day, and I alreay feel like I’ve known forever each and every person who bares their soul in this beautiful place. I suspect that its the inherent understanding of our different, yet mutual, circumstances that brings us together and holds us in a common bond. How nice. How comforting. Like the threads of the finest cloth woven together in a fabric of peace and tranquilty that covers and protects us all. There are pathways to discover – lets go find them. Blessings to all of you. I’ll be back, dear ones.
Margaret, too weird but Teddy is having his stent exchange also Friday morning. His is for his right ureter. When the CC returned last year it and some scar tissue pushed the right ureter closed. I love the food at this hospital so will have breakfast (not my favorite meal) then we always eat on the way home. Usually pasta. This is a no brainer as we have been through it so often for 2 years now. New stent, titanium, and only has to be replaced like every 9 months! Better than every 3 months. So, as I have my breakfast then carouse the gift shop, I shall be thinking of you & Tom.
Wow – that’s all I can say. Thank you everyone for your comments and well wishes and prayers for Tom. Teddy, thank you for lighting the candle for Tom.
I admit I was feeling the ‘pressure’ yesterday when I made my post, but have re-grouped and looking forward to Friday and a successful stent placement AND a day off of work (even though sitting at the hospital is no joy!) Then we have the weekend and Tom does not have to take any chemo all next week so that will give his body a chance to re-group as well.
I finished his VA Compensation claim and dropped it into the mail today, so we’ll see how we make out on that one. Not certain of the time frame before the VA makes any kind of determination and I am prepared for them to deny it. Hopefully because Tom is still alive and it’s not just his widow making the application, and we are not claiming that his CC came from Vietnam, but rather from the PCB’s that he was exposed to in the green army paint…well, lets just say that we’re hoping that the VA pulls their head out of their A*s, and makes a good decision! Tom tells me that if they deny it, he wants me to appeal it, and appeal it again. Which I will do because maybe, just maybe, it will help some other veteran down the road that presents with CC.
I plan to be a lifelong member on this site so that I can continue to give others comfort and help them through their trying times when they are helping a loved one fight CC. Even if all I can offer is moral support, I plan to be there for others, as others have been here for me.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Hi Jim,
Welcome to the site and thank you so much for sharing you and your wife’s story. No apologies at all are ever needed for a “wordy” post! So you go ahead and be as wordy as you like in any and all posts that you make here.
I hope to and look forward to reading more of your posts.Best wishes,
Gavin
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