hercules
Forum Replies Created
-
Posts
-
Dear SilentK…Life has thrown you a tough pitch, and your dear husband is really hit hard, I am sorry all of you are having to deal with this difficult emotionally overwhelming situation. You are strong and as Gavin said ask for help when you need it, even if it is from god. Your strength is helping him, even when he shuts down he needs you more than ever. Please take care of yourself as well as him, you are his blessing. My thoughts and prayers are with you both….And for Diezeldoo (Rod) Welcome to our board, You have a wonderful way of assembling your thoughts and writing, and a great supportive tone that is fantastic, I hope you stay around for a while as we all seem to get back more than we give here. Your wife’s story is tragic and cc struck you both, and it saddens me every time I read such a story for both her and for you and all who knew her. Your being here makes a big positive difference and once again welcome and I am looking forward to reading more of your posts, thank you, Pat
Dear ChezWright , I am sorry to hear of your recurrence, if you read studies of long term survivors many have multiple resections and I am hopeful you can find a team capable of this second resection if the new tumor is in a operable location ( you were blessed the first time, why not a second time ? ) Don’t let anyone dash your hopes without taking a serious look. You just have to find the doctor willing to look and more. I wish you the best , Pat
Yes, fear is a real part of it, the reality of a possible recurrence is with all of us, mostly early on, and time helps fear become courage and how we deal with it is very important, don’t obsess, even distract yourself away from dwelling on thoughts of the bad news nobody wants.Scan time puts it in your lap again and waiting for results is tough (my last two scans the radiologist was right there during the scan, and both times it was the same tech and she was nice enough to tell me the good news and not make me sweat the wait.) Even with close to twelve years of survival I think about it, I read the stories here and it is there in your face however it might not ever return and I think about wanting to see New Zealand or Ireland or some far away destination to go to and experience the people and bam you are not thinking about this darn chimp on your back. That is one way, some need medication the thoughts upset them so much, it is hard to remain positive but we must . I have had many blessings since diagnosis, too many to list, and that is all I need to think about if I start to have an internal pity party for myself, all my blessings… remain positive, Pat
April, thank you for sharing your fantastic story, this is what newly diagnosed people need to read. Your results are amazing and continue to be so. Your angels are working miracles for you…may god continue to bless you, Pat p.s. You have done all the right things….
I went to the way back machine, and I found this old thread, and it hit a cord. I have been thinking a lot lately about long term survival and all it encompasses which is certainly tied to diet, exercise, and keeping healthy. It is confusing to try to understand what factors lead to re occurrence of cc, and I know there are more long term survivors than what post here. I believe many who get past this cancer may not want to even look back on details of this experience. I saw a post by a man claiming to be a 29 year survivor on one of the facebook groups and I know there are more. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Some will do it and it is critical for patients facing this to know even stage 3 patients can be long term survivors if you pour through the statistics, so there is cause to remain hopeful. The whole way cc is treated is evolving and I am hopeful the numbers will continue to improve. Just wanted to dig up this old topic and put it out there again, remain positive, Pat
Welcome Celia, and congrats on 3.5 years and going strong. It is possible to get your life back to normal too. I hope you are living life and enjoying it… may your success continue, Pat
Hello Cindy, the anti-inflammatory drug is Meloxicam, I initially took it for arthritis and a bad shoulder only to discover the effect on my bile duct. We increased the dose from 7.5 mg. to 15 mg. and that is where I am….still getting along without a stent and it’s possible complications. I have Primary sclerosing cholangitis (PSC) which is an inflammitory condition in the bile duct, this pill seems to keep things working for now….I am not a doctor or nurse, I am a patient who listens and asks questions and reads and researches anything I want to know about. I write this here to share my successful results from taking this medication hoping someone can also get positive results. The pill is low cost and generic is available, so other than taking it 15 minutes after a good meal there is not much to trying it. I hope this helps you Cindy…Pat
Oh dear Positivity, I am sorry your mother is not doing well, your presence here has been huge and you have a caring, thoughtful way of approaching every challenge, Kudos to you. The human appetite is a delicate, yet normally automatic mechanism, if you study it there are many communications in the GI tract that use hormones and amino acids and it is complex. My appetite is still abnormal almost 11 and a half years past surgery, I can either not be hungry for the day or become incredibly hungry at the drop of a hat. Things that stimulate my appetite, wonderful smells of food cooking, cannabis, preparing a dish, especially a favorite dish, is stimulating. Also things that digest easy like soup is appealing usually. I have problems on and of with an appetite ‘swing’ of too little or too much appetite, My weight can fall quickly so I eat as much as I can, I don’t own a scale. I am weighed at dr. appointments and that is it. I try to pig out before appointments so there are no red flags. I know how you feel, it is hard to be powerless, I have offered the things that help me,yet we are all different,hopefully something will help, remain positive….we have loved your presence here and just be strong in this difficult time, try the smell of a roast chicken , that usually gets me, I wish you the best, Pat
Welcome Rhonda and I am both sorry you had to, and happy you found us. Many intra-ductal biopsies show a benign or ‘polyp like cells’ on the exterior of a tumor in the bile duct, as mine was. I was told back then that often cells on the exterior of a tumor is benign yet inside it is cholangiocarcinoma. I went with his recommendation and scheduled surgery asap. If you have a chance for surgery go for it, this is tough to beat and you have a good chance . Others here recently had the whipple, so read a few stories, a woman from Canada who recently had the operation posted on my survivor story, she is doing well as far as I know, it can go well. I wish you the best, Pat
Good for you Michelle, you are a champion! Keep fighting and keep being your own advocate, You have made all the right choices. May your success continue, Pat
Thank you Lisa, Kris gave me a hug in Salt Lake, saddening how things can change in four months, my prayers are with her and her family…Pat
DawnaN, congratulations on a successful surgery, and I hope you feel stronger soon. please understand some people respond well to chemo with a minimal side effects. There are success stories that are not written here. I met a very nice woman in Salt Lake at the conference named Christy and she had a very good response to chemo, which completely killed all cancer cells in her tumors and when operated on all cancer was necrotic, or dead tissue, the surgeon said he never had seen anything like it. I have met with her and her husband since and she is doing great. I saw her the day she had her staples removed, and it really took me back. I love it when anyone does well, and I hope your success continues. Please remain positive and hold off on the funeral plans until a reoccurance, which may never come. Do not rule out that your success CAN continue. Remain positive and hopeful, it puts you in a better frame of mind, increasing odds of a successful outcome. Enjoy every day you are blessed with and live life, do what you love, have fun like before, sometimes it goes on for a while, keep yourself well, Pat
I am glad to hear from you Michelle, I was beginning to worry , although many on this forum can be silent for a while, I had hoped you are alright. I have thought about you, it is good to see your post, god bless, Pat
Oh Julie, I am so glad to read you finally got a break…allergies to bandage adhesives I thought this poor girl can’t catch a break, wonderful your scan was clean and your blood count is up. May this trend continue, you deserve it dear Julie, my best, Pat
Lainy, our dear Lainy, where will we be without our upbeat cheerleader at the door? I loved meeting you and Mel in Salt Lake, and I hope you and Mel live your lives together and focus on doing all you wish to do together, life is for the living dear Lainy, go live and think about other things than the c word. You have been a beacon of information and hope for so many, and we will have to watch the introductions more closely in your absence. I am sorry to see you go, yet I hope you have time for the pursuit of happier things. Be well dear Lainy, Pat
