malinger2
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Hello Imcherry. You have definitely come to the right place. There are so many knowledgeable and caring people in here who will give you the facts and also share their hearts with you. The most important thing, I have found, is to keep positive. I know it’s hard at times but it is so necessary for your long term plan.
Sending positive thoughts and energy that your chemo goes well and that side effects are minimal. My husband did 6 months on gem/cis and his only complaint was that good tasted funny.
As Lainy said, read up and become informed.
You can do this.
Melinda AHello Aiste,
I’m sorry to hear that your dad had a bit of a set back with the fistula that they found. Thank goodness it was found so that a course of treatment can be planned. There is a lot of information on here and as Marions said, you will be able to search for specific information through that function.
The reason I have written, after reading your story, is to give you hope. Today is the one year anniversary of my husband’s surgery to remove a large tumor and 55% of his liver and surrounding lymph glands. He has done well and now volunteers at the City of Hope where his doctors have worked miracles on him and so many others. John’s gift is to provide compassion to new patients as he escorts them to their first lab and doctor appointments. They find hope in his story of being so sick and now giving back by helping those who are in the position we were in over a year ago. His surgeon wrote him a brief email yesterday, thanking him for helping his new patients and all of those who walk through the doors of the medical campus. What a blessing it was to find him.
You will have some setbacks throughout your journey, but keeping a positive attitude and maintaining hope are critical. The people on this forum helped me get through some very difficult times a year ago when I was in your shoes.
God bless your dad, mom and your whole family as you progress in your treatment. May God also bless those doctors to whom you have placed your trust… theirs is a difficult job.
MelindaThank you all for your encouragement and for making it possible for me to share the picture which, I believe, is in response to prayers. I did post it in Member’s Cafe. Thanks to Rick for making pictures available to all and to Marion and Julie for your help and encouragement.
Hugs,
Melinda ACongrats on one year Julie. Red Robin, McDonald’s, or Denney’s…it’s all about celebrating with family. I will keep you in my thoughts and prayers for a positive report on Friday.
MelindaDuke, I have tried to post an avatar picture in the past. I browse, upload and then I get nothing. I’m usually pretty computer savvy but had a mental block I guess with this small endeavor. I did post the picture on the Facebook cholangiocarcinoma page and many people responded or liked it. I’m not sure how many of you are on Facebook or are a member of that group.
By the way, John’s MRI and CT scans, from brain to pelvis, came back clear. I had such a sense of calm going in to get the results. I know that, at this point, there is another purpose for him making it through his difficult surgery and chemo.
Marion, it’s up to you if you’d like to remind Rick again. I know that people seem to be inspired by the picture.
Thank you for your interest.
MelindaThank you Marion. I sent the picture to “Iowagirl” and she was inspired by it as well. I would love to share it. Could you tell me how, or can I send it to you, as a moderator?
Thank you Marion, Melinda B and everyone for your positive energy. I will keep you all posted.
MelindaNot sure how to post a picture on this forum. Message me on my facebook page, Melinda LaVenture Aldrian, and I’ll send it to you. Or use my email address: melinda.aldrian@gmail.com
It is incredibly inspirational. I have had several people who have experience with angel orbs contact me about the image.
I hope this is ok on this board. I don’t want to get in trouble using my email or fb contact.thanks for your prayers for positive results. mri of brain today as well as ct of chest. tomorrow is ct of abdomen and pelvis. results on wednesday.
Hello CC Warriors! Thank you so much for your support and positive energy and thoughts….oh and for crossing everything possible on a body to bring good JUJU.
Lainy…great idea to just be forthright when talking with others. I’m sure that friends who offer help with word retrieval are put more at ease knowing that it’s ok to just say the word that you were struggling to find. John’s doctor is working hard to find the correct meds to regain chemical balance in the brain after surgery and chemo. We had an adjustment yesterday and today was the first “great day” in a long time. Hoping it’s not just a placebo effect, but I’ll even take that and hope it continues.
Hercules…What encouraging words knowing that you are 9 years out from a resection. As far as the cannabis, John got good results from Marinol (synthetic mj) and his surgeon suggested that he try the real deal for appetite and pain. We went to a clinic and spoke to the folks there but haven’t pulled the trigger yet. I think John’s being an ex Jesuit, may need a bit more persuading. I appreciate your suggestion tho and am keeping an open mind.
Julie T…You are absolutely right in that not being able to keep a thought or process as well as before. That is what really bothers John as well. Based on all of your comments, we had a great talk while walking around the gardens at City of Hope yesterday where we attended Ash Wednesday mass. You’re right that whatever is going to be his new normal does not diminish the person that he is. It is what it is.
Marion…thank you so much for your words of support. You’re right…surgery and chemo is such an invasion on your body and we just have to accept that each day is a gift and we are blessed to wake up each day and give thanks for all that we have been given.
Gavin…thanks for your well wishes from Scotland. You are always so supportive and I appreciate your contributing your crossed digits and positive thoughts as well.
John and I prayed and meditated at a labyrinth last Thursday and again today. I took pictures of him as he meditated and there was a beam of light enveloping him as he prayed. No doubt, he was inspired by this image and given hope. I wish I could share it with you… It is an incredible picture.
Will let you know how his scan goes on Monday…results with oncologist on Wednesday, then meeting with his surgeon on March 2 to review results. I love his surgeon. He wants to stay closely involved for at least three years he said. what a blessing.
thank you all
Melinda AI am so sorry Teresa. I have no words that will make the hurt go away. All I do know is that your mom was blessed, as you were, to be able to spend time with each other, to smile, laugh and share stories. Sending positive energy your way.
Melinda ADear Wensdi, I am so sorry to hear about your son’s diagnosis. This is a great forum for advice and support. I hope that you will receive comfort and a variety of ideas here. While UCI is a great facility, you may want to also look at City of Hope in Duarte, CA. It’s in the San Gabriel Valley. I know that they do take patients that do not have insurance. They have been incredible in treating my husband’s cc and everyone that works/volunteers there is so positive and welcoming. City of Hope also has Dr. Yuman Fong as the chief of surgery. He is internationally known and very well respected. Dr. Singh is my husband’s surgeon and we could not be more pleased. He is so reassuring and patient with all of our questions. He was the chief of surgery until Dr. Fong arrived from Sloan Kettering in NY.
Please check into getting a second opinion there. You wont be disappointed by their compassion and knowledge of cc and all cancers.
I will include your son and you in my prayers and hope that you will continue to reach out to the many wonderful people in this forum.
God Bless,
MelindaI’m so sorry Sammi. What a blessing to be able to go home to be surrounded with love and care. Sending positive energy and prayers for strength.
Melinda ATom and Ben…what a blessing you have been to each other and to the rest of us who have received messages of hope from you over the years. I am glad that you will be at home and that you are at peace with your difficult decision. I will include you in my prayers at Midnight Mass tonight.
Love and strength to you both.
Melinda AI saw that…pretty incredible. I believe that he might be on to something. I hope he is on to something.
Not jumping the gun is definitely easier said than done, but know that there are many people sending positive thoughts, energy and prayer to you. I think all of us have been there…over one hurdle and faced with another. I try to focus on what I can control, and that is getting the very most out of each day. Yup, I have bad days where I get discouraged. Both my husband and I tend to perseverate on the what ifs. when that happens, I usually binge watch mindless Netflix shows, just to get through that day and on to a better day tomorrow. LOL, works for me. John works in the yard to keep his mind occupied. Lainy’s sharing of Teddy’s thought, “Now we know what’s wrong, let’s fix it” is a perfect attitude to have.
You are not alone, Porter. The folks on this discussion board have been very comforting to me over the months. Hopefully you will find the messages not only supportive, but comforting.
Let tomorrow go, enjoy the present and move toward a new day…
Melinda A
