saracita
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Thanks for everyone’s messages, wow! What an outpour of love, support, and understanding. I am overwhelmed with gratitude for you all out there.
Darla-I am so sorry about your husband. I know about your story and have been reading your posts for a long time now. Thank you for the encouragement to keep going as you have done.
Teresa “Tanoland”- Hi, I hate to hear about the suffering of your sister, as well. I am so sorry for all that you and your family have been through, and still go through.
Dear Lainy, I have also been reading your posts for about a year now. You are amazing. Thank you for posting that poem for me. It is very beautiful and sad and rings true. You are right, it is a terrible feeling to try to reconfigure your life. My life was about taking care of John, and the further out I get the farther away I feel from him. He hated the way our lives changed, and I know he was ready for it to be over– yet I still long to care and fight for him. Thank you for being so present on this board and to everyone who unfortunately ends up here.
Julia “lalupes” Thank you for your message. I am very sorry for what you are going through with your sister. I wish your family the very greatest blessings.
Janet “magic” You’re right on about feeling like being trapped on a doomed bus. I have felt that I have been in a real nightmare from which I would never wake. It is awful isn’t it? I am so sorry for your husband. You and your family are surviving and that gives me hope.
Gerry “hollandg” Thank you as well for your message. I know the feeling of wanting to help, with no words to go… Thank you for being present to my pain. I do not know your story but hope to learn it. As for everyone on this forum, I wish the best for you.
Dear Teresa, I know about your son Alan, I am so sorry for you loss. Over the months that I have been on this forum, I drew many similarities between your son and John. John was very athletic, healthy, energetic. He climbed Mt. Kilimanjaro and played many sports. We always hoped that youth and strength would pull him through. During his illness, it was so painful for him to think of all that he would never do again. And terrible for us to feel his sadness as well. I have watched the struggle of John’s mom and dad, and I can see that the loss of a child to cancer is unlike anything else. I am so sorry. Thank you for helping me in my journey, as well. You, like John’s mom, must be an amazing woman to have endured so much.
Dear Pauline, Thank you for your love and support. In small ways I find myself behaving in a way John may have, or saying something I think he might have said. He had a very distinctive sense of humor, and was always incredibly sure of himself when making decisions. I find myself enacting some of these things in my life from time to time (normally I am very indecisive). I like the way that it feels when it seems John is coming out in me. I don’t know what I believe as far as spirits and life after death and all of that. My mind has been busy at work thinking about it for so long, now. I do think that we carry our loved ones on with us in our lives, through our behavior, treatment of others, and the contributions we give back.
It was great to experience his love. Our love grew greater and greater as he was sicker and sicker. My heart grew so wide, but ached so much.
Karen, thank you
Dear Joyce “jclegg” Thank you for writing to me about how you are dealing with the loss of Butch. I look forward to being where you are, where the pain has eased up at last. I wish you and your family the very best wishes for this new year.
FYI
There are several members of this site being treated in Atlanta. A woman named Suzanne and Wardell Castle’s wife… your brother may like their contact info as he goes about making treatment decisions.
Their handle names are : gtm2009 (Wardell) and suzannegm. I believe both have gone with Emory’s cancer center.
I wish your brother and everyone in your family the very best,
Sarah2 doctors that my boyfriend consulted with told him that portal vein blockage would eliminate the use of chemoembolization, others said the same about radioembolization (theraspheres and sirspheres) At the Mayo Clinic, they recommended both for him.
Ultimately he went with a leading intervention radiologist at John’s Hopkins, Dr. Geschwind who debunked this opinion, stating that this has been done for years and that it is an old notion that this procedure cannot be done with portal vein thrombosis.
A catheter is run from the femoral artery at the hip up to the liver or site of the tumor, from there I don’t know the exact mechanics just that the radiologist will find entryways into the tumor to administer the chemo…
If you would like further information about to expect, I can provide you with more details. My boyfriend had 2 of these procedures done at Johns Hopkins.
It sounds like a good plan. I’m here in Roswell and if there is ever anything I can do to help like pick up groceries, prescriptions, dog sit, babysit, go for a walk, get some coffee, please contact me.
Sarah Connell
770-312-7589Hi Snowlady,
It sounds like your father may be experiencing thrush in the mouth which are painful sores can come when on chemo. There is a mouth wash that a doctor can prescribe that helps with this. There are also over the counter toothpastes and other mouthwashes that help with dry mouth and promote more saliva activity. I am sorry I don’t remember the name of these products but be sure to ask your doctor because they helped my boyfriend a great deal. I think some of the dry mouth had to do with the pain meds my boyfriend was on, so we just had to manage the side effects as best as possible.
Thinking of you today,
Sarahhufdog,
I am so sorry to hear about your sister’s current experience with her drains and lack of appetite. It can be good to add as many Ensures to her diet as possible. They are easy to swallow if her mouth is dry and full of protein and calories. There are also Kellog’s protein packets that you can add to water. They are flavored but each packet has several grams of protein. Unfortunately this is one of the most difficult things to accomplish if a patient cannot eat, but it is important to try to have things available which may be appealing like popsicles and my boyfriend really liked having yogurt and apple sauce.
John had a hell of a time with his two drains. He loathed them more than the cancer, I think. He had all kinds of leakages and blockages and it was always a fine balance to make sure he was dry and comfortable. Sometimes they can increase the gauge of the drain tube and that helps with leakage, however doctors warn against too much increase as it can become a never ending process of going bigger and bigger. Are there any colostomy nurses at your cancer center? These are nurses who specialize in all the care for people with bags/drains needed for gastrointestinal problems. If so, they sometimes have excellent solutions and may have suggestions for your sister.
Keep up your bravery and strength to help in your sister’s fight. Remember also take care of yourself.
-Sarah
Dear Michelle,
I recently went through those blurry hours and days at the end of a loved one’s life. Hospice care at home definitely was the way to go. The only consolation that has really rung true is that it is the end of your father’s, and my boyfriend’s terrible suffering. I am so sorry for your loss.Sarah
Thank you all for your kind remarks and concerns about my boyfriend John. It is true that he passed away last Friday early in the morning. Life has been a real blur since this happened and I was too upset to come to the website to let people know.
This website and group of fighters and supporters were a key resource in our fight for John’s life. I believe that he knew that he was not alone in this, and for those who loved and cared for him, it was unbelievably useful to have this place to come to to ask questions and be amongst those who understand.
My prayers and thoughts are with all of you everyday, those living with CC and those caring for CC patients. It has been a horrendous journey but one that makes our love for one another so very clear.
John was the light of my life and I believe that he will always be guiding me, just as he did in life.
Thank you to the entire CC family here, for all that you have gone through and shared with us, for you have lighted the way on this terrible journey, and have shown us how to get through this cancer.
My boyfriend had two successful chemoembolizations of the tumor on his liver at John’s Hopkins. His doctor is called Jean-Francois Geschwind and he is considered one of the very best intervention radiologists. If chemoembolization or theraspheres is a treatment you are looking into, I would recommend contacting Geschwind’s staff at John’s Hopkins. They were very quick to get my boyfriend treated and extremely helpful over the telephone.
Best of luck,
SarahHi Michelle,
I was told by an oncologist that there are no nerve endings in the liver, thus CC patients usually don’t feel a tumor there. Now I may be misinformed, but I thought I would share this.
When my boyfriend John started developing abdominal pain, it was attributed to the distention of his gallbladder which was being stopped up by the tumor squeezing the cystic duct closed.
This scenario may be something that you’d like to discuss with your doctor. In John’s case that pain was like the canary in the mine shaft and alerted us to pay attention. Now that he’s had stents and gal bladder drain that pain has completely disappeared.
Best wishes
Sarah
