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Ladies, I think we are on to something! Lainy, you are thinking corporation behind us or celebrity status, I think Walter Payton, via his son Jarrett is a great idea. Lets face it, Walter Payton was/is loved by so many. I know I am a bit biased since I am from Chicago and remember vividly the Superbowl shuffle season when the Bears won the Superbowl, but their are Payton fans even in Italy. Like Patty said, Walter was such a philantropic and respected person. Maybe, we stress to Jarrett the importance of research money for CC due to the rarity, case in point, his own father was misdiagnosed because the cancer is so rare. Look what Michael J Fox has done for Parkinson disease.
BTW, awesome meeting you today Patty! Thanks for making the effort, it meant a lot to me.
xoxo
BarbaraI was looking at Paytons link and although I think it is great that his fund is doing so much to help cancer research, I was disappointed to see that none of the donations were going directly to Cholangiocarcinoma research.
Hi Marion,
Can you give me details on the event in Chicago? What would representing CC at a booth entail? I would love to help, but I am certainly not versed in this cancer yet, like others.
Thanks for everything you are doing to bring this cancer to the forfront.
BarbaraTess,
So sorry you are suffering such sadness and loss. I, too, was hoping that when this journey with my father ends I will feel relief b/c the suffering would be over. I suppose you can feel relief and yet feel an overwhelming void where your dad used to be. I can only imagine it is time that heals that kind of wound. Tess, I think of you everyday, and you are my example of strength and courage. You are helping me a lot, and your father must be so proud of the daughter you are.
Take care, you are in my thoughts and prayers
BarbaraHi Moon,
Like to welcome you to the site, you have come to the right place for information, encouragement, hope, and friendship, so sorry your family has been stricken twice with this cancer. We are all here for you!
By the way, I am Italian/American and speak semi- decent Italian, but I CANT write it. I am always impressed when someone can not only speak a foreign language, but write it also, especially English. The english language has so many idioms, silent letters, irregular verbs….very difficult second language. I think you are doing great in that department.
Take care
Peace
BarbaraHello Cheerleaders, confidants, friends,
Thanks for your input, encouragement, and friendship. You have all made this rough road more doable, by simply being there for me. My heart goes out to everyone on this site, because the only reason anyone is on this site is because they or a loved one is being affectd by CC. HOwever, it has given me so much comfort to know I am not alone. I couldn’t have done these last months without any of you. You all keep me going, and I realize if you all can do this, I can too.
xoxo
BarbaraPam
You and I are in the exact same spot right now, and I feel all your pain. Your pain makes me cry, which isnt difficult, because I have a constant flow of tears these days. I want what was there before with my dad so incredibly badly, I hate this cancer because it has robbed him and his family of so much. The other day in the Chicagoland it was 75 degrees out, which is amazing for March, and everyone was out in the neighborhood. My son and my neices and nephews were all in the front of the house, rollerblading, riding bikes, shooting hoops, and any second my dad should have been wallking down the block(he and my mom live a block away) he was supposed to be turning the corner waving to neighbors, saying “beautiful day!” the kids were supposed to run up to him and kiss and hug him, and then he would sit in the front of my house and watch the kids play and take it all in. Instead he was in a hospital, laying in bed, on tons of pain killers….Im sorry Pam that it was your Birthday, and a tradition is now broken for you. Eventually with the strength I KNOW you have, your Birthday will bring back warm, happy memories for you, just like eventually I will remembe my dad walking down the street at a brisk pace, smiling and laughing in the spring sun will be a wonderful memory for me. Not now though, now it is just heartbreak, and tears. Your mom lovingly brought you into this world 54 years ago, and you are lovingly helping her make her journey back home. YOu are an amazing daughter, and I can only think it is because you were raised by amazing parents.
Happy Birthday,
Peace and love
BarbaraHello everyone,
I am pleased to report the tapping of my dads abdomen was successfully done yesterday. It wasn’t an easy process and I was beginning to regret my decision, but now I am thinking it was worth it. We decided to have an ambulance take him to the hospital and we follow in a car b/c of concern along the way for bumps and general uncomfortableness b/c the pain has gotten really intollerable. It was a sad site, my brother came over with his kids as the paramedics were loading my dad, and my brothers 2 year old started to cry for grandpa, and that made my dad cry. The Hospice dr. was an Italian, and he spoke Italian to my dad, which made my dad smile. He took my mom and me in the hall and told us everything with the bark off- CC is vey aggressive, the tumors are in the internal organs, the acites is coming from the organs not functioning properly anymore. The liver is shutting down, and that is producing toxins in he body which is what is making him so fatigued, it will eventually go to the brain and to the lungs. He said “no one knows when, but this is what will happen” The words were the harshest I have heard, but he said it with such kindness, and sympathy…Then he asked, “what do you want for Roberto?” we said “a bit more comfort at the end of his journey” “perhaps to sit up in bed, possibly walk outside and look at his yard, just a few simple acts that will mean the world to him and us.” So the Dr. said, “ok, the fluid in him is in pockets, so it will be a bit more difficult, but we are going to get some out” and they did. Yesterday they took out 6 liters. He came back to the room and said, he allready felt a weight lifted. He had some soup and ate a cup at normal spead and grapes, and he actually wanted them, he really wanted a glass of red wine, but he will have a glass tonight at home. I am picking him up from hospital this am, and I don’t know how long we have- weeks or maybe just days, but we are going to make the most of the time. I treat every moment, every conversation, every smile, as a gift now with my dad. It is no longer about quantity, but quality.
Today WILL be a good day.
Peace
BarbaraPeace all
BarbaraDear Aberdeen,
I first want to welcome you to this site, and next give my apologies that you needed to find this site. Now that you found this site though, you are in good hands. I unfortunately found this site a while after my dad was diagnosed, and had I found it earlier it would have helped me even more, with all the bumps along the way with this cancer. However, through this site I have found a great support group, cheerleaders, sounding boards, and most of all many who have walked and are walking in my shoes. No question is too small.
I will add you and your family to my prayers
Peace and Prayer
BarbaraAmy,
wonderful news. There is nothing better to lift the spirits then a new life. Congratulations to you and your family.Thanks Lainy and Kris for the vote of confidence. I am doing the best I can I guess. I may never know if some of the decisions I made were the right ones, but I do know I made them with my dads absolute best interest in mind, even if it was with a heavy heart.
Peace
BarbaraPam, thanks for the beautiful story. The ocean, the warmth and the sun, are a great vision for me right now. The anticipatory grief is awful! I want to be prepared, but I just dont think that is possible. God has been holding me up through this whole nightmare, but his grip is really getting tight around me now.
Take care Pam, my thoughts and prayers are with you.
BarbaraTess,
I am thinking of you today, as I have been thinking of you since your dad passed. I will be with you in spirit today.
God Bless You
BarbaraThanks everyone for chiming in. I did meet with the the Hospice nurse today, and she said if we really want the procedure, the Hospice Dr. will write an order. However, we have to drive down to the hospital in Chicago, which is no big deal- 20 minutes from where we live, but if the surgeon approves the procedure, my dad has to stay over night. We were trying to avoid anymore hospital stays. It would be next Tuesday, so we have a bit of time to discuss, and make a decision. It will probably depend how the weekend goes. Yesterday was a good day, my dad was alert and up most of the day, even came downstairs for dinner and had some soup, but today he didnt get out of bed, and slept most of the day. I still believe if the procedure can give him a week or 10 days of relief, it will be worth it, but if the fluid comes back immediately and more, and we have to come back, it will be a nightmare. I guess we wouldn’t know until we do the procedure what the outcome will be. My mom looks to me for the guidence, and it is sometimes really tough to be the one making these decisions……
Peace
Barbara
