Hi to all you wonderful people. I wanted to tell you about the wonderful trip that my sisters and I took with my mother to Orlando. It's been a difficult winter especially for my mom, since my sister passed away in September. When my mother suggested that we (my 3 sisters and I) go to Florida together for a few days we decided to do it.

What a comforting bonding time we had together! So my suggestion to you who are travelling the path that we are, is: if you have family with whom you are close, go somewhere together. It's very comforting and theraputic.

My best to you all, Belle


(5 replies, posted in Members' Cafe)

Hi Lainy, I'm just cruising the site here, I just feel like I have to visit you guys every so often. All of those acid reducing drugs are similar and different. Whether you take, prevacid, prilosec, zantac or even pepcid ac, they interact differently. YOu have to find the one that works for you and stick with it until it doesn't work any more. This invariably happens as the stomach learns to circumvent whatever the drug is doing. Then, you just go to the next drug and hang on to it for as long as IT lasts and so it goes. Sometimes it last a few years, sometimes a few months. Best wishes and luck, Belle

So good to hear from you, Kris, I admire your spirit and your guts. I am thinking of you--Go girl go!Belle


(41 replies, posted in General Discussion)

Hans and Kris, I don't check the site so often anymore but it was with tears that I read this thread. You always made me smile and helped so often, Kris, so I hope that  you'll be OK and the fight will be strong but not awful.
Best wishes, prayers and hope, Belle


(6 replies, posted in Members' Cafe)

I have to second and third the tooting of Marion's horn. When my sister was so ill, Marion had the sympathy, the information and encouragement. Thank, Marion, Belle

Hi Jeff, Just checking up on my pals. My sister was allergic to most pain meds but did do very well on dilaudid.  Best wishes, Belle


(13 replies, posted in General Discussion)

Dear Iris,
I was so sad to read that Peter passed away. You were from the very first online supports that I had when my sister was so ill last year and I was hoping for only good and better things for you and your love. I hope that the fond memories of all the good times that you share will sustain you through what has to be a very very sad time for you. With gratitude and fond wishes, Belle

Thanks to all of you for answering. My husband had the surgery done two weeks ago. Truth be told, he looks great, lost already 25 lbs. (in addition to the 75 before the surgery) but he feels rotten. Specifically, he is retaining a lot of air and is very bloated and gassy. It's hard for him to take liquids, let alone puree down. So if anyone can fan out and ask someone who did go thru this if this was an issue...It will be appreciated.
P.S. When I saw that I had 3 responses to this way off topic query I thought-Yes!!! CC friends and family come through again. Best to all of you, Belle

Hello, even though my sister passed away a few months ago, I still come on every so often to check up on all of you and find out what's going on. This question is so way off topic but since this off topic board was added (thanks Marion) I decided to ask since all of you are so helpful and knowledgable. Question: Did anyone here ever have gastric bypass surgery? If yes, I need some big time help with my husband so if you could post or e-mail if that is more comfortable, I'd be so thankful. Best regards to all, Belle


(10 replies, posted in General Discussion)

Stacie, thank you for the post. Even though my sister is gone now two months, I still check the boards every so often to 'check up' on my friends and the people who helped along the way. So thank you and all the best and even better to all the fellow travellers. Belle

My sister was on xanax for a time. I'm not sure it helped tons, but it certainly didn't hurt. I wouldn't be able to tell you if it caused nausea, because she was nauseous all the time. Hope that helped a bit, Belle


(8 replies, posted in General Discussion)

Well, Lainy , you finally goaded me into sending one. It's the best I could do under the circumstances. Good luck and more power to you. I have admiration for people who walk the walk, not just talk the talk. Have a good one, Belle

Joyce, I know a bit about mourning because 7 years ago, I lost my precious 13 year old daughter very suddenly and without any warning at all. People ask me all the time if it gets better. The answer that I say is that it doesn't get better, it gets different. Right now, when your loss is so fresh, your emotional pain is almost physical. Almost everything you encounter in your daily life is in context of your mother. This passes with time. Your memories and longing for your mother never go away, but it recedes to the back (or side) of your brain instead of banging at your forehead all day, everyday.

I remember wishing right after my daughter's death that it would be 3 years later already because I felt I couldn't live any more with such raw grief. But I lived, I have experienced and do experience much pain. But I have also lived to feel great joy and happiness (which I never believed I would). We receive a lot more than we are called upon to give up. (I truly believe that!!)

This is a difficult time. Give yourself time and comforts. Best wishes, Belle

Dear Joyce,
Having just come from the closing of this period of time with my sister, I'll share a bit of what we did. Our initial consult with the palliative care team was in the beginning of July. That was when it was apparent that there wasn't more to be done to stop the cancer. Though it seems so scary to be in touch with hospice care people, they are truly helpful (if you get the good ones on board. And if you don't...CHUCK THEM and find the next one that is good.) My sister lived for two months from that time. For the first two to three weeks, she was semi-functional. When she was up to it, she came out of bed and even went out for short periods of time. As the cancer spread she was more and more and eventually completely bed ridden. The palliative nurses and drs. involvement intensified as she weakened.

At this time, you and your husband need to talk and make palliative care decisions. For instance, if he gets another infection, will you treat with antibiotics? If he can't eat and drink, will you hydrate and/or give tpn or something similar? There are different ways to go and YOU not the dr or nurse should make that difficult decision.

You will still have important cherishing moments with Butch--as well as hard and excruciating ones as well.  I am thinking of you and if you have more questions, you can e-mail me privately and I can try to help.  Best of luck and strength to you, Belle


(4 replies, posted in General Discussion)

There definitely are drugs to raise WBC, but is your mom's RBC normal as well? Is it just the WBC? My sister needed to be transfused from time to time and never had chemo. The disease itself (the drs. said) plays havoc with the blood counts. Hope that helps some, Belle.


(9 replies, posted in General Discussion)

Lisa, I have to echo the responses that everyone else posted. My sister was never on chemo and was quite tired all the time. It was not consistent and sometimes she had more energy and sometimes, for a few days in a row, less. I think it has to do with the disease more than anything. Take care, eat well. We're thinking of you, Belle


(21 replies, posted in Introductions!)

Sorry for all the pain that you and your family are experiencing. From my sister's experience, once there's all this metastasizing into the abdominal cavity, you have all this pressure and sometimes blockages in the stomach and the intestines. My sister did not eat 9 weeks(!!) before she passed away, just hydration and fluids (only sometimes and not at all for the last 2 weeks). At this point, you have to concentrate the most on pain relief and nausea control. And I agree, the down hill on this is so quick and very terrifiying. Be strong for your mom, Belle


(13 replies, posted in Introductions!)

Hi to you, Lina and sorry that you have had to make our acquaintance. My sister was treated in Memorial Sloan Kettering by Dr. Jarnagin. He is a surgeon. The oncologist we had met with is a Dr. Keilson. Both were really excellent and even though my sister's liver was unresectable, they did everything possible to treat her. The main thing is to have insurance that they accept and be persistent in trying to get appointments and tests. Hope that helps, Belle.


(37 replies, posted in General Discussion)

Irene, I read your post and just felt so sad and sorry. I remember the day my sister's resection was aborted and the frustration and disappointment that we felt. Be strong. Recover from this and then regroup. It was hard to do that refocusing; when you're so programmed in one direction to redirect in another. We'll be cheering you on and hoping to hear good things from you. Thinking of you, Belle

So how do you say go girl go in swedish???

Good luck, Jeff, and here's hoping that you give all those nasty critters and their cousins a good zing and zap with not too much down time for you. Best to you, Belle


(11 replies, posted in In Remembrance)

Thank you all for your kind messages of warmth and condolence. My sister is truly in a better place and we are a stronger and more devoted family for having jointly cared for her with my parents for the last nine months. As I had mentioned, we are a large family (an even dozen with my late sister) and we really bonded and consoled eachother and my parents over the last week. We shared our memories and love for our sister and most of all our relief at her deliverance from pain and agony. Thanks again, Belle

And so my dear cc friends, I've just returned from Canada from the traditional mourning week for our dear sister who passed away at noon a week ago, Monday, September 8th. She is in a safe and happy place, we believe and know and most of all, her horrific suffering is now over. But we are so sad and miss her, her joyous smile and simple happiness.

But in the sorrow, (especially you, Lainy) to those who have been championing for wider recognition of cc and for funding for research... the main focus (in my eyes) is for research for early detection of cc. The bottom line is that if we could find this nasty cancer earlier, before it is all over the place, there is so much more chance for survival.

Thank you all for your support, information and cyberwarmth. I'll be checking in on all of you, Belle.


(37 replies, posted in General Discussion)

Irene, I was so sorry to read of your mother's passing and wish you much strength and sympathy. May you find comfort and solace to cope with this huge huge loss. I read once, that as long as we have our mothers, we are children and when we lose her, even well into adulthood, we are orphaned. I thought then and now that that's so true.   YES do go on with the scheduled resection. You feel depleted, and you are! But you are strong and young and otherwise healthy and those are factors that weigh heavily in your favor in your fight. Don't delay. It gives those nasty cc creatures time to explore and find cousins and friends.  smile Best wishes and you can do it and we're all rooting for you, Belle


(9 replies, posted in General Discussion)

Happy to hear you up and running and all full of spunk and punch. Hope you continue with clear scans and painfree (too much to ask?? ok less painful) days. Belle