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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 49
Dear Pam -- Thanks for sharing your beautiful story. My husband passed away May 18,'07 with this terrible disease. Fortunately, he didn't suffer too long with it. I live on the ocean at Hutchinson Island, Fl.during the winter months and I can relate the comfort the beach and the water bring. In fact, my son and daughter accompanied me in burying their Dad's ashes in the sand. We purposely put them fairly close to the lapping waves on the shore so we could witness them being carried out to sea as we sat and reflected on the wonderful life we had with "Dad & Husband". In a memorial I wrote a favorite verse --- "The tides recede but leave behind, bright seashells on the sand.
The sun goes down but gentle warmth still lingers on the land. The music stops but echoes on in a soft and sweet refrain. So every day that passes by a part of you, Dear (name), will still remain. My thoughts and prayers are with you, Pam. Hugs, Jean
To everyone who is going through the heartbreak of this horrible disease -- my prayers go out to all of you! I ask God to please give you the strength and hope for better days. God bless all of you!!
Susan -- So very sorry to hear about your Mom. You were such a supportive and loving daughter and she knew that right to the end. You were there for her and, speaking from experience, it will be a comfort to you always, knowing that you did everything that was humanly possible to show your love in her final moments. God Bless you and give you strength through your grief. Love, Jean
My heart aches with each and every post -- it's so hard to think about the pain and suffering that so many people are going through!!! I know the agony of watching loved ones -- their pain is OUR pain -- in our hearts , our minds, our constant thinking. God's blessings on each and everyone of you. I have mentioned it before -- thought I'd offer a suggestion again. My husband had morphine and it didn't touch his pain. An angel of a nurse came up with the idea of "Dilaudid" -- one injection of that and the pain was gone and my husband rested peacefully. Love, Jean
My heart is with you, Michelle! My husband passed away last May '07. We were married 53 yrs. I continue to read the posts and pray for all those who are suffering from this terrible disease. I know the numbness that you are feeling and the disbelief that your loved one is gone. You will gain strength as time passes, but the tears will come out of nowhere at different times of the day as memories come flooding over you. The important thing, as I have often heard is, don't hang on to the grief -- you have to gain the strength to maintain your health. I always picture how proud my husband would be of me, to see that I am able to smile in memory of him. Time heals, but your heart and mind will hold him forever. I bought a gold chain and put his wedding band on it -- I wear it often.
Dear Amilcar - I read your message about your Dad going downhill so fast. I know exactly how you are feeling, for in May, our family went through the very same experience. My husband entered the hospital, looking fairly well on a Thurs., no symptoms other than fatigue and low blood pressure. Friday evening after he ate a light dinner, he experienced pain (greater than a 10, so he said) and he grew more serious as days went on. His urine turned very dark brown and he could not eat much. By Wednesday, he was still somewhat alert and then shortly after that, went into a coma and never spoke to us again -- passed away Friday. Nurses at the hospital could not believe how fast he went downhill. A doctor friend of ours theorized that his liver hemorrhaged when he had the extreme pain. Injections of the drug, Diladid, took the pain away, giving him peaceful rest at that time. God Bless you during this transition in your family's life. Many thoughts and prayers are with you. Love, Jean
Dear Richard -- Not knowing exactly the extent of your fahter's condition at this time, it seems if he feels well and has the thoughts of exercising, etc.. or at least giving all this a try once he is home, let him. If there is interference of having visiting nurses, etc. going on around him when he doesn't need them yet, it seems the freedom to be himself, if he so desires, might be beneficial to him. If, however, he is apprehensive and needs hospice care with meds and everything, he will undoubtedly show signs when that need arises. I know it's a tough decision to make at this time.
God bless you with His love and care. ~~ Jean
Dear Mary - Wow, that is wonderful news. It would be good if there was a follow-up and research on his particular case. Never know if that could lead to a successful treatment for others. Wouldn't that be great!!!! So happy for both of you. Enjoy life -- "Live well, laugh often and love much".
~~ Jean ~~
Dear Rita -- My husband passed away in May and since that time, I have read as many messages as I can. I read yours with heartache and understanding all through your father's illness. Many of the things that you were experiencing, how your Dad was talking and acting and the symptoms that you were describing, were very much like my husband's in his final days. Just always remember that you were there for him in his final days. That is so comforting to me now. God bless you and give you strength in the days ahead. It's a blessing that he will not have to suffer anymore -- he is in a much better place than on a bed of pain! God bless you and your family. ~~ Jean
Hi Jeff -- You are one special guy!!! I loved your poem and know that it came right from your heart.
There are many of us who read these posts with hope in our hearts for those who are suffering the anguish connected with this horrible disease. I have lived it and gone through it with my husband who passed away in May,'07. You have been a true fighter and, as another of your faithful "cheerleaders", I'm going to continue with my positive thoughts and prayers for you -- my favorite saying (as someone else also mentioned) -- THIS TOO SHALL PASS!!! Have a wonderful Thanksgiving, Jeff -- I'll be thinking of you as I also will be soaking up lots of gravy with my mashed potatoes and turkey.
Love and hugs --- Jean
Dear Cathy -- I can't even imagine how Gerry has the stamina or the will to go to work while he is battling this disease. He needs every ounce of energy that he has, plus time to rest and relax when he needs to. Do hope he can get the disability leave soon. My heart goes out to both of you. God Bless. ~~ Jean
Hi Carol -- Just read today about Charlie's surgery being moved up. Do hope he is doing well after the surgery. My thoughts and prayers have been with you! God bless. ~~ Jean ~~
Dear Carol -- My thoughts and prayers are with you and Charlie and will be on Thurs. Nov. 8 when he has his surgery. So glad to hear that he seems to be looking on the brighter side as he awaits this day. God bless both of you with strength, comfort for your fears and love in your hearts for one another. Just remember, that love will always be there -- the illness has put a strain on it, but it's there!!!!! God bless! Love & hugs, Jean
scragots -- So happy for you to have a wonderful oncologist/surgeon who has "given you back your life"! It's rare to find an oncologist who is also a surgeon, so it seems. How fortunate you are!!
God bless you with many happy and healthy days ahead. ~~ Jean (seasheller)
I had the biggest disappointment in my life after my husband was admitted to the hospital. We had both an internist and an oncologist that we really liked so much -- they were always so kind and caring. It was hard for me to believe that neither one of them showed up at the hospital in the 8 days that my husband was there. They were each in a GROUP with 3 other doctors who were not familiar with my husband or case. Just writing about it now makes me both mad and sad. I guess in the long run, it's all about money because the bills came in for their short visits in the room -- nothing under $200.00 or so a visit. I know they need their time off, but where is there compassion and dedication to their patients?? I will find it very difficult to go back to Florida and return to our internist for my personal check up. I haven't seen or talked to the man since he admitted my husband.
I would have been comforted by a call from him to express his sympathy -- maybe I'm expecting too much. Blessings to all, Jean
Hi Kris -- You sure sound like a "miracle case" with your early diagnoses and surgery. Your prognosis sounds so positive. Has the jaundice cleared up? My thoughts and prayers are with you for all your future decisions. I'm sure everyone that follows this site will be interested in keeping posted --- God Bless!!!!
Hi Kris -- I'm curious. Is your pea-sized tumor in the bile duct and what has been done to shrink the size? What symptoms did you first have and how was it discovered? It sounds like you have a very good chance to beat this disease, being that it was discovered in early stages. Are you to have it monitored for a while ? It is so difficult to predict what course to take in planning to have children. Pregnancy, of course, can become complicated with all the changes that take place throughout your whole system with the nutrients needed to nourish both the baby and you. It sounds wise to wait a little longer to be sure. That's just my opinion. In the long run, maybe God will guide you if you turn to Him in prayer. God Bless.
Hi Jeff -- Wonderful news! You are definitely an inspiration to all on this site. What a fighter you are with a positive attitude. That's what it takes. Hugs and prayers are always with you. Keep up the good fight!!! Cheers! Jean ("seasheller")
Dear Rae -- Your story about your Dad brings back the painful experience of seeing one we love so dear going through all this. My husband did not have pain until the very last week of his illness. One night his pain came on suddenly (out of the blue). A doctor friend theorized that he had sudden hemorrhaging in the liver and bile duct.
Morphine shots did not touch the pain. An angel of a nurse then administered a shot of DILAUDID which finally relieved the pain. It was such a blessed relief. (it might be wise to keep that name in mind -- I had never heard of it!)
My heart goes out to you and your family. My husband passed away May 18 of this year and I am continually comforting myself with the thoughts that he is in a better place, free of the pain that could have lingered for a long time -- it's a blessing to know he is at peace. My heartfelt thoughts and prayers and with you.
Love & Hugs, Jean
Dear "cdr" -- It's so difficult to even imagine you battling CC being alone and with the care of a 10 yr. old. besides. Is there any kind of a support group in your area that could help you by doing outside activities with your child to give you a break once in a while? A church group or something! Do you have family that can help? Maybe your family doctor can guide you. You are in my thoughts and prayers!!! ~~ Jean
Dear Jeff -- You truly have been an inspiration with your courage and determination in battling CC along with the rest of our loved ones. I'm holding you and "Babe" in my heart and my prayers that you will gain hope and strength to fight on with the faith that you have had all this time. Sounds like a smart move on your part to take a rest from the chemo -- time out to wrap your arms around one another and share lots of hugs and kisses -- the best medicine that money can't buy!!! God bless you!!! Love & hugs, Jean
Dear Rae -- I'm sorry I didn't answer another question you had. We did see an oncologist who monitored my husband, sending him for Cat Scans and then MRI's to check for changes in the size of my husband's tumor. It remained about the same for awhile, and he didn't have any significant weight loss, so an alarm didn't sound, calling for chemo.
My husband elected not to have it if the subject was brought up. I know his quality of life was better without it. ~~ Jean
Dear Rae -- My heart aches for you and your family. It is a tough decision for your Dad to decline getting chemo, but from my husband's experience, it was a wise one for him. He had a large tumor in the right lobe of his liver (inoperable) He felt well and enjoyed life for at least six months without having to suffer the ill effects of having chemo. He lived life to the fullest, so to speak. Soon he lost his appetite and some foods (especially meat) did not taste good to him anymore. He was still able to enjoy foods that did appeal to him otherwise. His system obviously started weakening (he developed blood pressure problems) but he still did not feel horribly bad. He entered the hospital to be rehydrated and suddenly did have one evening of intense pain, which was alleviated with drugs. Sad to say, within a week he passed away, but when I look back, he was blessed at least with many good days that he might not have had if he suffered through the effects of chemo during that precious time.
Blessings to your Dad and you, his family!!!
Love & hugs, Jean
Bob's Dear Wife -- My heart, thoughts and prayers are with you and your son at this time. I lost my husband, Marv, on May 18, '07. It's awfully lonely without him, but I feel the peace, knowing that he did not linger or suffer very long. May precious memories of his love for you be of great comfort in your sorrow. My love and hugs, Jean
No suggestions, but I can offer my prayers and thoughts for the Lord to guide you in making decisions. I can understand the importance of quality of life versus going through such an operation. God bless both of you!!! ~~ Jean
Posts found: 1 to 25 of 49
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