karen
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Heather,
What an uplifting commentary! I know what it is like to feel the Lord touch you and I so wish my husband could too. I know it would make his journey with this horrid disease earier.
Karen
Jean,
I know this will sound strange, but I am happy for you. You are one of the lucky ones who are going to be operated on to remove this horrible cancer.
My husband has only been offered palliative care. He would rather fight this on the table as you are. My prayers are with you for an excellent outcome.Karen
Dear Susan,
So sorry to hear of your loss. Your Mom was fortunate to have such a loving daughter by her side until the end. Prayers for you to get you through the grieving process.
KarenBazel,
Previously (on this website and John Hopkins) I had found this and posted:
Was on the Johns Hopkins discussion board and found an interesting item I wanted to share because it has been on my mind and I don’t seem to find much information about it. I do worry for our children as this disease is usually detected so late in its development.
Vickey wrote this…..’My Mom died February 5, 2005 of BDC. My Doctor recently sent me for a gallbladder/liver sonogrm because he said that some studies showed a genetic link to the disease. Fortunately, everything was fine in my case. He said we would run the test again in about 3 years. ‘
To which I replied….’Thank you for that post. I found it very informative. My husband was diagnosed with the dreadful BDC in October and we have been on that horrible roller coaster ride ever since. Through this period of time I had found out that his maternal grandfather had died of ‘inoperable liver cancer’ over in England. I asked my husband’s doctor if there was a genetic connection and was told ‘no’. I am glad you posted this so I can tell my daughter (and if or when she has children) what test to have done periodically to be on the defense because I thought the similarities between my husband and his grandfather were significant. ‘
I do believe there is a genetic connection. Would welcome some fedback.
Sorry to the other members as I know this is redundant.
Karen
Prof L
I think this would be a wonderful idea. If such an institution existed I know my husband would be there as fast as he could book a plane ticket. It is extremely hard to find surgeons willing to take the chance of operating on cholangio tumers even if the patients are willing and realize the high mortality risks. As he puts it…he would rather die on the table trying to remove the cancer.
Karen
Heather,
My prayers for you and your husband. Keep the faith…I sometimes feel myself waivering and try so hard to believe that the pain we all are suffering is for a purpose.
Karen
Belle,
My husband had Cyberknife treatment in February. A month later he had a followup scan and the results looked promising – tumors shrunk. He has another follow-up scan scheduled for the beginning of June. Following treatments he has become very fatigued and lost a little weight that he is regaining now. My prayers to your sister.
Karen
Matt & Val,
Prayers sent for you and all the other victims and caregivers who are battling the horrid disease. Don’t give up hope.
KarenTo you Mickie…may all your reports be so uplifting. It is always so good to read positive reports.
And to you Pat…I cannot believe a doctor could give such deceptive information. He (or she) should be drawn and quartered. I know I worry if my husband’s doctors are giving us the whole picture. It is not their right to hide/edit information. I am so sorry that you will have to break this news to your parents upon their return.
Karen
Jenny,
So sorry for your quick loss. I agree with the problem of no early detection. It is so startling to find how advanced the disease is when diagnoses is made. I wish you strength as you go through your grieving.
KarenMy heartfeft consolences to you and your family Kelly. It is horrible how quickly this disease can work. The knowledge that he is no longer suffering or in pain may help ease your grieving process. Remember the good times.
Karen
Dear Stacie,
My sincere and heartfelt condolences to you and your family. The rollercoater ride this dreadful disease burdens families with is horrific. I trust your Dad will be walking with you down the aisle in spirit. Prayers to you and yours.
Karen
Patricia,
Do not “beat yourself up”. Push the guilts away. You were working to keep him alive as long as you could. This is a very tough disease to live with as a care giver and so much worse for the individual who has it. Patients run thin at times and we cannot take back words spoken. However, actions speak so much louder than words and he saw all the love you had for him by the research you were doing for him. Take care of yourself.
Karen
