need to vent
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devastated…..at the annual bile duct cancer walk a seven year CC survivor wore the T-shirt with the inscription “Cancer Sucks”. Rightfully, it drew much attention from others.
I believe that biliary cancers are especially vicious. There is no early detection method is in place therefore; diagnoses generally occur in the later stages of the disease. It is a rare cancer (often times the general practitioners may never even see a CC case during his/her entire time of practicing medicine) it is silent in progression, and symptoms are misleading, causing long delays until final diagnoses.
This discussion board has become one of the most important outlets for all touched by this cancer. We know, we understand, we feel for each other, and we are here to support one another. So, dear devasted, know that we are in this together and that we will stand by your side, we will cheer you, we will wipe your tears, and we will find joy in every little bit of progress made in fighting this disease.
The replaced stent should increase the bile and allowing for more comfort for your husband and once the pain is under control, he should feel significantly better. It canDear Devastated, vent all you want, that is one of the reasons we are here. I used to go in the car for a 20 minute drive, put Mama Mia on and sing until I thought the world could hear me. Came back home and felt ready to start again. I learned that I had to be strong because that is what Teddy wanted and I thank him that I listened as it got me through the toughest times. He had this miraculous way of steeling his mind for what ever and so I had to do the same.
I really feel that the patient feels he/she is letting the loved one down by being sick and I didn’t want him to feel that way. Sounds weird but I guess I drew my strength from him. I know not everyone can do that but it sure helps to find where you can draw your strength from. I am praying for your husband to get his pain under control and to go home soon. Sending you special hugs and yes CC sucks!Keep coming back and venting whenever you feel the need. If not here, where else. This is the best place to be when dealing with this devastating disease. I’ve been where you are now and can feel your pain and confusion. Everyone here knows and understands better than anyone else what you and your family are going through. I will keep you all in my thoughts and prayers. I know it’s not easy, but try to take care of yourself too so that you can be strong for your husband and family.
With Love & Hugs,
DarlaWhat an torteous cc journey this has been for our family. With a diagnoses on June 18th 2011 that we thought was an allergic reaction to bactrim to our 5th hospitalization due to this insidious cruel disease. We are now on our last chemo option of gem/cis and this will be our second treatment. Unfortunately, we could not use the standard cc chemo treatment due to elevated bilirubin counts, we had to do fulfox & oxi to oxi & xeloda,both caused incredible nausea and vomiting. After our first cycle of fulfox the tumors were “stable if not improving”, then we switched and our latest ct scan shows tumor growth in liver and thickening around gallbladder. This is causing an extreme amount of pain. My husband was on oxicontin 120mg three times a day with xcycodone 40mg breakthrough. This still did not touch the pain. This past weekend he was switched to methadone 10mg, which was way underdosed. He is not admitted to hospital on PCA pump to get the correct dose. Also, during this time he had a stent replace with quesiton of blockage due to elevated alk phos.
We just can not believe how devastated our family has become in just 4 short months. With twins in their first year of college and a 20year old daughter….I just don’t know how to deal. We just hit 24 years of marriage on Oct 3rd and my heart just breaks to have this happening to us. How can our world go so upside down in such a short amount of time??? To watch the love of your life just wither away in pain and lose his spirit is just heart wrenching.
I know you all are the stongest group of cancer patients and or caregivers that can possibly exist. May God bless each and every one of you and keep us all in his care. Cancer sucks.
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