so glad for this news smile

2

(13 replies, posted in Grief Management)

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 smile

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.

3

(18 replies, posted in Introductions!)

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,
Sarah

4

(13 replies, posted in Grief Management)

This is the first time I have posted on this part of the forum. Before, it was resource-seeking, and fight! fight! fight! It breaks my heart where I am today. I just got up from trying to nap, but started to cry instead. I think I need to do something else instead, maybe see if I can get this story out of me.

I am 24. My boyfriend died about 2 1/2 months ago. He was 30. For the previous 10 months before his death. I was at his side almost every day. He was diagnosed while we were living in France together, we were to get married in the next year or so. We were as in love as anyone can be.

After his diagnosis and return to the US, I moved in with his family in NJ. My family is in GA. It was so hard. There was so much suffering. In John's case, there was no hope, no cure, just the understanding that each day was precious-- most days were not precious as he endured so much pain, so much sadness, so much disappointment.

The treatments were a nightmare, and he hated to look at himself and the way cancer changed his appearance. He once told me that he hated being himself. How horrible. Someone that had always been so confident and even slightly arrogant for his entire life. It seems as though we spent nearly every other week in the hospital for about 10 months. Me and his mom, together, trying to help our John. Utterly, unspeakably heartbroken, at every turn. There were moments where all I could do was lay on the floor. As though life were leaving my body as well. I wonder, looking back, how could I endure so much suffering? How could he? How could his mother and father? I am sure that we had angels by our side, there was something stronger than human will walking us through that tremendous pain.

It was a cruel nightmare that lasted almost a year. I lived facing his death for so long, that his actual death felt almost like a release from the hell. For a short while. A day maybe. And then like all of you, anticipatory grief became real grief. It went from numbness to reality, to deep and dark despair. Deeper and darker than I knew was possible. During his illness there was so much panic, fear, nervousness... the treatments, the fevers, the ER, the tubes, the oxygen tank, the pain, all the physical changes, what did this mean? What could that mean? What would happen if the doctors couldn't do this or that for him?

And then it was over.

Now I am left with so many horrendous memories, what feels like a lifetime of pain, bottled up and condensed into one nauseous, depleted body. Still, the worst part, is remembering his sadness. How horribly disappointed in what had befallen himself and his loved ones. How terribly heartbroken he was. The night he cried out to me, "I don't want to die!" I will never, never forget it.

I feel as though my heart and soul have been so transformed by suffering, that I can't see straight. I feel as though I dealt with so much pain before his death, that I have no more reserves to handle the loss. Is it possible to run out of your coping mechanisms? Your ability to deal? I guess that I will find out, maybe one day I will be able to answer that question myself. Today I don't know the answer but have to just believe that it is no- just keep going.

I continue to hope for the best, knowing that this will stay with me forever. Even though it is sadness I talk of, I can honestly say that I wouldn't have it any other way, because its all I have left that keeps him around. One day I hope that sadness turns into a state of profound remembrance, that will guide me and help me heal. It is oh so hard.

I know you all understand me, thank you for being there.

-Sarah

5

(10 replies, posted in General Discussion)

I wish for the absolute best outcome for you.... no cancer!

6

(10 replies, posted in In Remembrance)

An email I received from his sister, Jenni.




Dear Friends,
If you have not already heard, I am writing to share with you the loss of my brother, Rob Bridges, Wednesday night, December 16th in Houston, TX.

I was blessed to spend the last two weeks with him, enjoying his company, helping him get things prepared and taking care of him, along with a long list of loved ones at his home here in Houston, up until the very end. He had advanced liver disease and once cancer treatment was suspended (he could no longer tolerate the treatments), the cancer moved very quickly and overcame him. Both my parents, and my sister, her husband and their two children were able to visit with him in Texas while he was still able to enjoy their company and communicate. He chose hospice care which helped to make his passing as comfortable as it could be.

There will be a memorial service on Tuesday, December 22 at 11:00am at the Church of the Epiphany (Episcopal Church) in Houston, TX (9600 S Gessner Dr. Houston, TX 77071-1099, 713-774-9619). If you are so moved, in lieu of money, please send flowers as this is a spectacular church with beautiful acoustics ... which is meaningful since Rob's passion for music permeated his entire life. The aroma and beauty of the flowers would be so fitting in this context. There will be a professional quartet of his peers that will play and a group of Zen Buddhists that will chant... it will be a service that Rob would be very moved by. The memorial will also include a short list of selected people to speak of the various aspects of Rob's life and contributions. A reception with lots of photos and Rob "memorabilia" (of which you are encouraged to bring and display your favorite pieces from your own collection) will follow the service.

On a personal note, please let me deeply thank each of you, for my brother Rob, as he was so very grateful to those of you who were his friends and gave him so much joy in knowing you and sharing part of your life with him! To those of you who contributed to helping allow me to be here with him during this great time of need in his life, you will never know just how precious this time was to both of us and we can't express our combined gratitude to you...

Much love,

Jenni

7

(2 replies, posted in Chemotherapy)

2 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
770-312-7589

9

(16 replies, posted in Chemotherapy)

Hi 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,
Sarah

So funny! I sent you an email through this website but I'm not sure you got it... ?
-Sarah

Kristi,

I am so sorry to hear your news. I am thinking of you and your family today.

Love,
Sarah

12

(4 replies, posted in In Remembrance)

Hello,

I recently learned that our friend Tiffany, "tiff_anne13" of Wisconsin has passed away at the age of 26. She was a friend that I met through this forum and corresponded with through email. She was very young and fought very hard, and was an incredibly sweet person. God bless you Tiffany.

13

(5 replies, posted in General Discussion)

I believe lung, peritoneum, gallbladder, and spine are common.

Hello everyone,

John Ur's sister Megan had her baby yesterday early am. He is Owen Patrick. He is adorable and the whole family is overjoyed with his arrival. John would have been the greatest uncle. I am so happy for John's parents Nancy and John.

-Sarah

15

(35 replies, posted in Introductions!)

hufdog,

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

16

(14 replies, posted in In Remembrance)

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

I am so happy!!!!!! Happy Halloween to you and your family!!!!

Many of you know about my boyfriend John who passed away almost 2 weeks ago. We are having a memorial celebration for him in a few weeks... an opportunity for everyone to come together to remember his life and what a great guy he was.

I am trying to figure out the words... that I would say about him... if he were in the room. He was a very sarcastic and oftentimes critical fellow... smile That was what I loved about him! I am not sarcastic nor am I critical... I'm one of those heart on her sleeve, mushy people.

I believe that he will be there, in a way. I struggle between sounding extremely depressing or too cheezy. I am devastated by his passing, but somewhat relieved that what made him suffer so greatly is finished and gone from his body. I would like to honor him by telling the whole world about how much he meant to me, but I can't stop this self-editing, and this feeling that no words will be adequate to be what I want to express.

A long-winded question, does anyone have any advice as to how they came to find those "right" words?

19

(12 replies, posted in In Remembrance)

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,
Sarah

21

(8 replies, posted in General Discussion)

Hi 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

22

(12 replies, posted in General Discussion)

Hi everyone,

Just wanted to check back with an update on John. Previously I had mentioned his fevers and fatigue after a stent change. After they removed the stent finally, all the fevers and fatigue are a thing of the past. It seems like it just wasn't working at all and better not to have had it in the first place. He has since then been on antibiotics. I don't know how long he will stay on them, but they seem to be doing their job if infection continues to threaten his body.

Lately he has been receiving iron and blood transfusion and feeling excellent. He's gaining weight and has almost the normal energy of a 30 year old.

We are so happy for this and I pray that we continue in this good health.

Thanks again for all your support,
Sarah

Dear all,

My boyfriend John has been experiencing on and off fevers since having his 2 bile duct stents changed 3 weeks ago. He's been on various antibiotics which didn't seem to kick the fevers. Fevers only came in the evenings, and would strangely go away, and return every few days or so. Blood cultures show no sign of infection.

Today he had an ERCP to see what's going on inside of there. The doctor removed one stent that seemed not to be doing it's job, because the whole area is too constricted for anything to get through. The other stent is working well and that side of the liver is getting good drainage.

The doctor said that he would like to John to be on antibiotics permanently because of the build-up on that one side. To me this is scary knowing that eventually the body can become immune to antibiotics if used long-term.

Part of me wonders if he will be better off without the poorly performing stent, which may be contributing to all the build up in there. Sometimes I wish I could just really see what is happening for myself. Mainly I'm worried about the antibiotics. Have any of you ever heard of a doctor prescribing permanent antibiotics?

-Sarah

Thanks to all,

Will follow up with local herbalists to see if they can supply the seeds. I appreciate your responses very much!

-Sarah

Have been hearing great things about milk thistle seeds. Does anyone know where to find them online or what line of stores to try in the US??

Thanks,
Sarah