roma35
Forum Replies Created
-
Posts
-
Im so sorry for what you are going through, it seems you have an amazing mom and your kids an amazing grandmother. Shes way to young to leave you all, and it isnt fair. My son was 7 when my dad was diagnosed, and 8 when he passed, so he was young, but not too young to forget his grandpa when he was sick. He remembers many sick days, even the day he died(all 6 of his grandchildren were with him) he also however remembers “healthy” grandpa. The grandfather in the garden, the grandfather showing up unexpectedly in our kitchen(we were neighbors) the grandfather buying a lemonade at his lemonade stand and paying with a $20.00 and saying keep the change. We have managed to keep his memory alive by talking about him constantly. I thought his memory to my son and neices and nephew would be tainted by the memories of him being sick, but thats not the case, they dont focus on that, they focus on the healthy grandpa memories. I hope your kids can give you strength during this period and in the future, I would have had a much more difficult time without my son and neices and nephew. Peace to you and your family in this very difficult time.
xoxo
BarbaraDear Lanne,
welcome to the site, although it does seem as if you have been here a while…Im sure in the 18 months with your mother and CC, you have had some highs and many lows, and now you have reached that definitive point many of us caretakers reach-hospice. Calling for Hospice for me was in a way a relief to share some of the burden and also a gut wrenching acceptance that my dad was not going to beat this cancer. I know this must be so hard for you to give up hope. I hope your experience with Hospice is better then Lainy’s. I cant complain about our experience. We kept my dad at home, but our nurse came often and was available anytime we called wether it was in the am, middle of the night etc….when we needed more morphine it was always delivered within a few hours. We tried to give him the least amount of morphine that he needed to control his pain because we knew as soon as we started up-ing the amount, he was going to be too out of it to even talk. We didnt want to not hear his voice anymore, but gradually the pain kept getting worse, and obviously the pain won out over communication, and then we didnt hear his voice ever again. Lainys right, give your mom lots of I love you’s, hugs, kisses. She will know you are there and comforting her. I wish you peace and strength during this sad time.
xo
BarbaraHi Mellanie, well as the saying goes no one ever says at the end of thier life “I should have worked more”. I think the saying holds very true for caretakers. It wasnt my spouse with CC, but it was my dad. There is no where I would have rather been then with him, helping my mom take care of him through his illness. I have my own business, and probably lost more then half of my business while taking care of my dad, but to this day I have no regrets, and wouldnt do anything differently.
Im so sorry that your life has changed drastically and your “dream” house is no longer going to be easy to manage. That breaks my heart for you and your family. I agree, I hope what ever decision you make brings some sort of peace and lightens any burden for you that is possible.
You are in my thoughts and prayers
peace
BarbaraAndy, that would make sense that maybe the tube split. My dad had 4 stent changes and one of the times the stent had cracked. He never had an external drain, but I wish he did because he had so much fluid inside of him and the build up made his abdomen swell like a women 9 months pregnant with twins and he pain was horrible.
I totally know what you feel like with your dad not wanting to go back to the hospital, the last few times we had to go, my dad didnt want to…he went but it was heartbreaking. He, too, was fearful hed end up having to stay, or somehow a procedure would be done that would cause more pain and discomfort.
Its great that your dad is pain free!! your an awesome daughter, and Im certain he knows he is lucky to have you going through this with him and your mom.
xo
BarbaraI read your post through tears because you sound as enamored and dedicated to your dad as I was. This cancer is brutal and heartless and takes such good people, but I know now(especially from this site) the extra 20 months we got with my dad, were a gift. We traveled, spent lots of time together as a family, my dad kept working because he loved his work, and we never talked about the “whys and what ifs”. I still cant help thinking sometimes about the last months/weeks/days/hours of his life, but I think about it less, and remember more the many years together, and the last good “healthy” times we had with my dad. CC has way of robbing family and friends of CC patients of so much, but never our memories, esp memories of people who were at one time alive and strong and full of life. Keep building lasting memories with your dad! You obviously realized the value of every moment spent with him on earth. He truly must be a wonderful man to have raised such a kind and loving daughter.
xoxo
BarbaraHans, although your posts are ofcourse sad, because it has always been obvious how much love you and Kris shared and your pain is felt, your posts are also so comforting because you do sound like Kris, in your observations, depth, emotions and humor. It seems while the few short years you were together were not nearly enough, the connection you shared take some people a lifetime to find.
Kris helped me so much when my dad was sick and at the end. It takes a very special person, to have this monster illness, and still be able to provide others with comfort, joy and laughter.
xoxo
BarbaraHi Cindy, how great it is if there are no mets! Im wondering if the chemo worked to shrink the tumor? Northwestern in Chicago may be worth a phonecall, I know in my dads case, they were able to operate and remove the tumor. It is definitely always good to have an advocate getting info, processing info, helping with decisions, your aunt is lucky to have you.
Hi Rick, I would ask your Onc if it would be possible to take a diuretic, which is an oral treatment for ascites, esp since you cant see the ascites yet, it may do the trick to eliminate any potential fluid build up. Im so sorry for your pain, and discomfort..
peace
BarbaraHi Brad, If travel would be difficult for you, the Surgeon that operated on my father was amazing. He was able to perform the whipple and remove my dads tumor. He was honest and imformative and very patient with all of our many questions. Im so thankful to him. His name is Dr Malcolm Bilamoria and he was working out of Evanston Northwestern, but has since moved to Alexian Bros in Arlington Heights(illinois)
I wish you the best in your treatment.
BarbaraKristi, my heat just sunk. I am so deeply sorry for your news. Your sister was too young to leave this earth and her children and you are too young to lose your sister. Although it may give you little comfort now, the fact that she didnt suffer long with this horrid disease is a blessing. I am heading into church shortly and I will say a special prayer for you sister and your family.
Peace be with you
BarbaraAshley, what a wonderful story. I can imagine you and your families joy and relief. What else could you ask for on the eve of Thanksgiving. Im wishing your mom and brother, strength an endurance in their recovery.
BarbaraI just read your post, and I am so, so sorry, for your sister and all her loved ones. She is too young to be facing the prospect of leaving this earth. My father battled this horrible cancer for 20 months and I did hours and hours of research on this site and any other I could find, and in the end, I concluded that no case is the same and there is sometimes no rhyme or reason to this cancer and its progression. It does appear in your sisters case it is extremely aggressive. My heart breaks for your sister, you, her children and all others in her life. What an incredible spirit and courageous women your sister is. I am certain you give your sister much needed peace, by knowing her children will be loved by you. I am glad you found this site, it gave me so much comfort when I was going through what you are going through now. I will keep your sister and all of you in my prayers and thoughts.
BarbaraGer,
If you are in fact having the Whipple, it is said to be one of the most grueling recoveries out there. BUt, how great to be able to have a resection!! I will say, my dad had the whipple at age 72, and although it was very tough, he fully recovered. Within 3 months eating what ever he wanted, walking 3 miles a day, working. YOu have youth on your side! I agree, lets hope the surgeon gets in, gets tumor out and no complications. I am sending prayers your way.
BarbaraHi Irene,
My father was on Gemzar for 5 months after his whipple. He suffered few, if any side effects. Many side effects are “possible”, but he escaped them all. No nausea, numbing of extemities, pain, hair loss. He had a little weakness, but that only lasted a day or two.
He went back to work as well, took look walks, had a social life…so gemzar was ok in our book.
Also, there were no signs of tumors or reoccurance when he was on Gemzar.
Hope your body will react the same way.
BarbaraThank you so much for sharing your story with us. I cant add much to Marions expertise, but I do agree with everyone that you and your family suffered a huge loss at the hands of cholangiocarcinoma. You husband was way too young to leave this earth and you and your sons were too young to lose him. My father died on April 22, of this year after a 20 month battle, and I didnt discover this site until a year after he was dianosed, and I thank God I did. I would have been lost without the wonderful people on this board. It is very bittersweet that this board is growing everyday, b/c we all know why we are all here, but the feeling of knowing I am not alone is priceless. Thoughts and Prayers with you
