roma35
Forum Replies Created
-
Posts
-
I agree! I love meeting up with my cholangio family. I know many loved ones from above are very happy we have found eachother. Marion, Im serious about coming to California this summer and Lainy, we would love to stop to see you and Robin. I dont go on the site like I used to, maybe because its 2 years that my dad passed, and Im still just so sad…but I get updates daily from my mom, and I feel very connected to this little “club” that unfortunately keeps growing..
Maybe, I can get Patty to come along, but at the very least her and I want to take a ride to see Darla.
Thanks for everything Marion, my mom really, really enjoyed her experience and is so glad she did something to help.
xoxo
BarbaraIve been looking for a reason to take my mom to California. Let me know the date of walk when it is decided. Now Im thinking we definitely need a walk in Chicago as well. Ill get a hold of Patty, Im certain she would help me figuire out how to get it going…
BarbaraHi everyone! I didnt have the pleasure to attend the show, but from eveything I heard from my mom and Marion it is has been a great success. The location of the booth alone certainly gives our cancer some pressence. My mom commented that when some Italian Drs approached her at the booth and she asked in Italian “conosce questi malatia?”(do you know this cancer?”) and they responded somberly “por troppo, si”(yes, unfortunaterly we do) She realized that this cancer is all over the worId and many Drs when they see it, just dont know wha to do to treat it.
didnt find this site until a year and a half after my father was dignosed because his Onc didnt even use the term Calangiocarcinoma, she just called it Bile Duct Cancer. She told me once she only saw this cancer a few times in her career. This orphan cancer needs all the exposure it can get,and people like Marion(wonder women) are doing so much to make that happen.
I had the pleasure to have dinner with several of the board members of our site Saturday night(Stacie, Sara, Seth, Rick, Dawn) and as I told them the other night, I am internally grateful to all of them for this site. It saved me when my dad was going through the final stages of this awful disease. It was my lifeline.Ashley,
your post is just so, so sad. It is very difficult to come to this site and read some/many of the posts because this cancer is just so incredibly unfair. You dont deserve to lose your momma at such a young age, nor your sister, your dad and your sweet baby, and most importantly, your mom doesnt deserve this disease. I have no words except to say Im sorry. I do believe we all go to a better place and although I dont know why some have to leave far too early, I do believe God has a plan. Ill put you, your family and esp your momma in my prayers.
xoxoBarbara
I agree with Lainy there is no right or wrong to the grieving or loss situation. Everyone is different, and everyone handles it differently. Some fall apart and it takes a long time to pick up the pieces and some have a heavy heart, but function out of need or want. I suspect if one has children(young children) in your case, your sweet and lovely Hannah, people find the strength, atleast externally to be strong. For me it has been a process. My dad has been gone almost two years, and now some memories or thougths of him that used to bring tears to my eyes, make me smile, but sometimes I still have moments of really missing him, of tears, and I suspect that will always occur. I believe it becomes as many say on this site “our new reality”.
I am very sorry for your loss.
peace
BarbaraKelly, so sorry, I am very familiar with the initial devestation you are feeling. I remember it just felt sureal at the time, like I just couldnt believe this “thing” was growing inside my dad. At the time my dad even felt ok, but the jaundice was just making it so much more difficult for him and all of us. I have to admit that eliminating his yellow skin and his eye whites that turned yellow was a complete relief. Ask his physician if he knows of a gastrointerologist in the area. That is the Dr. who placed the stent in my dad. We had that procedure done within a few days of diagnosis. So sorry Kelly. Take care of yourself too!
xoxo
BarbaraHey Darla,
If you wanted to come and not have to drive back at night, I have a spare bedroom. Come to think of it, so does my mom, if anyone else is thinking of coming, your welcome to stay with us. Let me know:)I plan on looking up Cindi(Lindas SIL) and Lindas mother soon. It was so sad to hear Lindas mom say ” I cant believe I only have two sons now, and not a daughter”, and to see her little boy walking around in his little suit…..
Yes, by June us Chicago dwellers get the warm weather we have earned!! Its been a tough winter! Either way, if the event is outside, Ill tough it out if it helps us get closer to a Cure for this dreadful disease.Small world!! Today I met a long standing customer of mine, that I had never met face to face, and turns out he is a Gastrointeroligist at Evanston Northwestern Hospital. He knew exactly what CC was, he has only seen a few cases, and he kinda sighed when I told him what my dad died of, anyway, he is going to be at the ASCO in June, I told him he needs to go by your booth Marion.
BTW, I am so glad we met Linda last summer, my mom and I actually went to her wake and met her family, her sister inlaw and mother were amazing. It was heartbreaking, but it was so great to meet them face to face and hear first hand how much this website helped Linda. Her little boy was just a doll! Now he has an amazing guardian angel watching out for him.
Peace
btw, Marion, I can make it to the event Feb 28. Is it outside??brrrrrr:)Wow, great news!!! I love a good CC story. Im so happy for your dad and all his family. Benign is one of my favorite words in the English language!
Keep the good news a comin..
xoxo
BarbaraToni Ann, so sorry for your loss. Seems like your mother is a wonderful women, and your memories will keep her alive and with you forever. More then sadness, I felt wave of relief when my dad passed from CC that the suffering and pain was no longer…
I wish you peace in the days, weeks, months to come.
xoxo
BarbaraThat is wonderful news. I pray the chemo continues to work! Sounds like Dr Gores is an angel, and Mayo is doing an amazing job taking care of you. Safe trip home!
I just read your post and it made me cry. What a beautiful relationship you must have had with your husband, and what a beautiful gift you and your family gave him at the end, and he also gave you. Just as Jeffrey is taking care of the family on earth, Im certain your beloved will be taking care of all of you from above. I wish you peace in the days, weeks, months to come.
xoxo
Barbara
