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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.
So glad to hear that you are adapting well with Orville. I found mine fascinating (weird, I know) and was mesmerized by the bubbles etc. after a shower when I would "air dry". You can get so many products from different manufacturers, free for the asking, and one great gift was a small backpack type thing to carry all supplies. I found that experimenting with different supplies was beneficial because my skin got sensitive with the little square sponges that get rid of glues, etc. Also, remember to get a card that you have an ostomy so that you can carry water and cleaning supplies on a plane.Who knew? there are so many videos on You Tube about care and management...when I was housebound and bored I would watch them. Bless their hearts, trying to help and being so open with their lives.
All the best to you Lainy...and oh yeah, stay away from the broccoli and cabbage. Gives you enough gas to heat a home in the frozen tundra.
Hello Lainy, so glad that your surgery went well and that you are on the road to recovery. I've gotta tell you that having an ostomy bag scared the heck out of me when I perforated my colon in 2012. I very quickly joined an online discussion board like this one and they were marvelously supportive. The important thing was to experiment with the different apparatus and find the right products for you. I preferred the Hollister products and the smaller bags, opting to change them more often instead of draining them. Look on Amazon for the "pink tape" that is so hard to find. At times you may want to tape around the edges of the mantle, especially if you're going out or trying new foods. Tape generally irritated my skin after a while but using "pink tape" was a God send. It has zinc oxide in it, so no irritation. Keep a food journal as well. Record what you eat and how your body reacts. Stay away from gassy foods. There are plenty of online articles about which foods you should eat. Your ostomy nurse will be a great help here too.I know it sounds weird, but in some cases, an ostomy was a lot easier than a "normal" procedure. Just carry a spare set of clothes and plenty of supplies with you at all time. It's a piece of cake...you got this.
Feel free to contact me with any questions.
I am so happy that you are up and walking and giving us a report so soon. Great news about no additional cancer.
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.
How blessed you are to have Teddy visit you. There is no doubt that he is still helping you from afar. I believe too my friend. We went to our beloved labyrinth today to plant some more flowers. After the planting was done, I rested in the center and as I now love to do, took some pictures. When I got home I looked at them and saw about 10 orbs in this photo, mostly above the Guardian Angel statue. I was in such a peaceful state.
Feeling very blessed and happy that Teddy danced you to sleep.
Here's the picture:
It's easier to see the orbs on an iPhone than a computer. You can enlarge sections on a smart phone.
That is a perfect saying...it has also been one of my favorite and is relevant now since John now faces some challenges associated with chemo brain. Just wish he could find peace.
I can't explain it either, but as you said, i find great comfort knowing that "friends" are near.
Be well, dear Lainy.
Such great pictures of loved ones. Enjoying pictures of family is definitely the best medicine. Sometimes when I get down, I just flip through pics and videos of the grandkids. Such great photos posted on this thread.
Here's John with our son and grandson last week after playing golf together. Only 4 years old but plays 9 holes like a pro.
Lainy, what a huge orb over your granddaughter's head I think Teddy wanted to make sure that you didn't miss his sign.
In looking at the origin of the Orange "light" you can see several circular patterns. My friend, Sr. Joanie said those are definitely orbs.. The crazy thing is when I took it, I saw nothing out of the ordinary with "lighting". I duplicated it the following week when we took my sister to the labyrinth and she stood with John. I tried to see if it worked with me or a friend standing alone and nothing. This was seconds apart. John said not to "test" it but Sr. Joanie said not to hesitate to show off the energy of her beloved labyrinth.
I'm glad that you were as moved by the picture as I was/am. It is a beautiful and special place for us to garden each week.
Thank 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.
As many of you know, when a devastating diagnosis is delivered, family members run a gamut of emotions and, in my case, crank of the prayers to help deal with the unknown. Prior to my husband's last ct scan (resection and chemo done from May -Nov, 2014) we were both getting a huge case of scanxiety. We normally do gardening each Thursday at a labyrinth, owned by a group of Benedictine nuns, and this particular day, John and I were both praying hard that we would receive good news from the MRI and CT scans. I asked that John be wrapped in the Lord's healing grace and that if it was God's will, that he receive good news. I turned to take a quick picture of John as he was walking and praying and thought nothing of the picture until I looked at it a few hours later. What I saw made me immediately start crying. There, in the center of the light rays, is John, deep in prayer. An additional "light source" is also shining on him, from no known source of light. Our nun friend said that the orange light is John's Guardian Angel. The bright light is an answer to what I prayed for...warm, healing light.
John's scans did indeed come back clear and when I showed the picture to his surgeon, his response was, "None of us could have done this without His guidance and blessings". Wow.
It's not often that you get to "see" a hug from God. We feel very blessed.
This may be a bit too religious for some, but I needed to share the picture and what we believe was a response to deep prayer. I hope that it brings you peace and hope as it did me.
God bless all of you who are dealing with cc, be it as a patient, a caregiver, or family member.
Congrats 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.
Duke, 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.
Thank 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.
Not 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: firstname.lastname@example.org
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
Hi all. I could use some positive thoughts and energy for the coming days as we head into our 6 month scan next Monday. My husband was diagnosed in April, 2014, had 55% resected in May, and then followed with 6 months of gem/cis. At his three month scan, they were unable to use a contrast as his creatinine level was off due to dehydration, but what they did see looked clear.
While John is not that apprehensive about the scan in particular, he has been plagued with incredible "foggy brain" since his chemo that has let to a dark depression. We are seeing both a counselor for individual therapy every 10 days as well as a psychiatrist every month to get the meds right so that the chemical imbalance in his brain might be righted.
I know that stress is so bad for the body and as a diabetic and heart patient, I worry about the toll the constant stress is taking on his body. I have posted before about our worries with chemo brain and how long it takes before it fades away. His oncologist says that sometimes it never goes away. I guess I just needed to vent and ask for your thoughts and prayers for a) good results on his upcoming scan, and b) some relief from the anxiety and depression that he is suffering from on a daily basis.
Thank you so much for your work here in supporting cancer patients and their families. I appreciate you all so very much and wish you well as well.
I 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.
Dear 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.
I'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.
Tom 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.
I saw that...pretty incredible. I believe that he might be on to something. I hope he is on to something.
Thanks for sharing that. Teddy sure seems like he was such a caring and compassionate man.
What a blessing to all that had him as part of their lives.
Beautiful and inspiring words. We can all learn by what you have shared, that we have so much for which to give thanks...
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...
Thanks for sharing your story Mike. It is truly inspirational to so many families on these boards. Please keep us posted as you continue your journey. Continued success in the coming months.
Posts found: 1 to 25 of 76
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