kristin
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Thank you for your post, Marion. I think that’s a really good idea.
I was having a very rough day when I posted (my second drain has now gown haywire) and was feeling like an official “failure” because I now have disease progression. It was my sweetie of a husband who started pointing out all the things I’ve done since I was diagnosed and had the recurrence.
I think a CC success story is anyone who FEELS like a success story, and I would just love to hear all the stories of people who feel that way!
Thanks!
Kristin
Once they get that drain working properly, he should feel some relief from the bili symptoms very quickly. When they put in my first drain, within 24 hours I was already feeling vastly better, even though that drain (and its successor) were screwed up. The itching dropped by about 90% within a couple of days, though a few weeks later I still have yellow eyes like a space alien!
More good wishes and prayers coming your way from Kentucky–
Kristin
Jennifer, how is your father doing? Please let us know when you find something out. I’m keeping you both in my thoughts and prayers.
Kristin
MY CC SUCCESS STORY
OK, so now I have a growing tumor that squashed my bile duct, and a malfunctioning bile bag hanging off my side.
But in the six years since I was diagnosed, I have:
traveled to Europe three times and to Asia once
driven and camped the US coast-to-coast on back roads, twice
written two novels, a memoir, and part of a nonfiction book, and had a literary agent submit them to major publishers
written textbooks (my profession) that are used by hundreds of thousands of students in Asia and Latin America to learn English as a foreign language, and understand other people better
started making visual art and showed it in public shows
deepened my spiritual life enormously, and found my way back home to church
made many new dear and wonderful friends
got my first-ever dog, who delights me every day
bought my first-ever house and planted my first-ever garden
and learned to be a better and kinder wife, sister, daughter, granddaughter, daughter-in-law, and friend.
To heck with the bile bag and tumor, I think that’s pretty darn successful.
I’m SO glad they’re giving this prompt attention, and I hope everything will be straightened out very soon. I was kept in the hospital after the replacement procedure because they thought I might have a septic infection, which in fact I did not, but better safe than sorry.
I was given conscious sedation both times. The first time it was OK (just uncomfortable) and the second time it wasn’t enough. Perhaps you can tell them about your dad’s concerns.
If it takes too long getting him admitted to the hospital and he gets worse, don’t hesitate to take him to the emergency room (or whatever you call it in Canada!) Biliary drains are not common, and I think some medical staff don’t realize how potentially dangerous a problem with them can be.
Wishing you both all the best– your dad has a wonderful, caring daughter!
Kristin
What do you mean exactly by “survivor”? Cancer-free, or just still alive and kicking?
As far as I’m concerned, every patient who posts on these boards is an amazing survivor story!
Kristin
I had really good results with radiation and Xeloda too– no tumor growth for 3 years!! (until just recently) I hope your tumor got just as “discouraged” as mine did.
Out of curiosity, what led to your decision to start chemo now? (if you feel like sharing)
Wishing you the very best of luck–
Kristin
It sounds to me like something has gone very wrong with the drain and he needs to go back to the doctor that put in the drain. You need to call that doctor’s office ASAP.
I had an external drain put in a couple weeks ago, and after about a week suddenly my belly was all swollen and the bandage was full of nasty goop (not bile.) The home health nurse sent me back to the hospital immediately. The doctor said the drain had shifted, which happens sometimes. They replaced it with a larger size and this one seems to be working fine– draining crazy amounts of bile.
Please, call the doctor when you read this, it could be infected.
Wishing you and your dad all the very best!
Kristin
Kevin is pretty darn cute (I think!) That photo should be a riot. Believe me, I’m going to hold him to his promise!! “Miss August”, I can’t wait!
Kristin
Gerry, hundreds of people all around the world (including me!) are sending you their prayers and best wishes for a completely successful surgery and a very smooth recovery. Please post again when you can.
Wishing you the very best possible outcome–
Kristin
Kris, we’re so proud of you! Half the problem with the medical system is in knowing when to be sweet, and when to dig in your heels, and you are one smart cookie! You stood up for yourself and got exactly what you wanted and needed.
I hope the radiation will work just as brilliantly for you as it did for me– it walloped the heck out of my tumors, shrank them by half and stopped them from growing for more than three years.
Meanwhile, have a GREAT time in Greece, and give us a full report on all the yummy food you eat there!
Big hugs from
Kristin
I am SO glad you’re doing this, and I hope you enjoy the heck out of every single minute!
That really is one of the advantages of living in Europe, you can do those last-minute getaway type breaks to some really cool places. Here, let’s see– a quickie weekend escape to… Ohio? Somehow not quite as appealing.
Have fun!!!
Krstin
The problem with your idea of finding “a survivor” is that this cancer develops so differently in different people. Also, the size, location and number of the tumors determine what kind of treatment can be used.
That said, I think our patients who have lived a long time with good quality of life:
1) get second opinions (and third, fourth, fifth…) about treatment plans
2) change their health habits overall as needed, paying much more attention to nutrition, exercise, etc.
3) Have some kind of spiritual belief to sustain and guide them
4) keep an open mind towards alternative treatments
This is just what I’ve noticed from reading posts here. Something to think about.
All my best to you,
Kristin
Kris, just to reassure you, I had my radiation done here where I live, in a dinky town of 10,000 people in the Appalachian foothills. And as I’ve said many times, sweet motherly Dr. Patel and her staff gave me 3 years of wonderful joyful life.
It’s possible that, as in my case, you may have a big expert doctor from one of the universities to calculate the dose and design the shields that aim it at the target area. But beyond that, radiation is a matter of having up-to-the-minute equipment and techs who really care about you, and it sounds like that’s just what you’ve got in Kalmar. I had to go to the “big city” (Lexington) only twice– first for the treatment plan/ dose/ shields, and then at the end for a check up.
Hope this helps. Please feel free to email me any time!
Big hugs,
Kristin
