kristin
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I HATE having to sleep flat on my back because of this stupid drain in my side!! Hate it, hate it!
The only proper and enjoyable way to sleep is on your TUMMY with your face smashed down into the middle of several fat fluffy feather pillows. EVERYBODY knows that. Right??
Thanks for this thread, Kris, you’re brilliant!
Whine-ily yours,
Kristin
Jen, how is your dad doing these days? Is the drain helping him feel better? It’s pretty amazing how quickly you can get relief when the bile is draining. I hope he’s much more comfortable now, and enjoying his food again.
Tons of good wishes to your whole family,
Kristin
Stable is GREAT! Stable is fabulous!! Yayyy stable!
My tumors were stable for 3 years, and I enjoyed every single minute, and am hoping for stable again before too long.
Thanks for the idea about the plastic sheets, Kris– I think I know what you mean, and I’ll ask about them when the home health nurse comes today. (See, there are SOME civilized aspects to the US “health” system– the home health nurses are wonderful!)
As for stylish black… I always used to wear tons of black, but when I got diagnosed, I suddenly developed a craving for really bright gorgeous colors that mean “life” to me. First I sewed myself a sexy little sundress in the colors of a gold and orange sunburst. Power colors! Like your winter coat!
Hugs,
Kristin
Thanks so much for your encouragement! I went back to the hospital yesterday to get drain #4 checked, and was seen by the head of the department (the guy who had put in #3, who was extremely helpful.)
He adjusted it a little, and had more stitches put it to make sure it doesn’t slip, but essentially told me I might just have to live with the drainage. He said the skin needs to heal around the tube to hold it in place, and that happens sooner or (much) later. He said there’s no point changing it out for an even bigger drain (this one is already big) because it just makes a bigger hole that’s even harder to heal. And he said the only alternative was a major, major surgery that he doesn’t recommend.
So… Time to perfect my bandage skills, and I guess I need to revise my summer wardrobe… Lots of black tshirts and black yoga pants. Waaahhh! I was really looking forward to wearing all my little sundresses again. I’ve lost so much weight I would look great in them.
I HOPE there will be no more thrilling installments in this saga of drains and yello goop… Thanks SOOOO much for all your support and suggestions!
Love,
Kristin
Dear Heather,
I am so, so sorry to hear your news. A sister is so special, and I can’t even imagine how close twins must be.
I will keep your whole family in my prayers.
Kristin
So I had drain #4 put in yesterday, and three hours later it was leaking all over and I was having really, really bad pain. Drain #1 lasted 2 weeks, # 2 lasted 10 days, #3 lasted 3 days, and # 4 didn’t even work for 3 hours.
I am just completely running out of optimisim. I am so, so, so, so tired, after all those months of jaundice and misery. Please tell me that something is going to go RIGHT before too much longer…
Love,
Kristin
Thanks, everyone, for all your encouragement and useful suggestions! I’m going to call the doctor when his office opens in 1/2 hour. I know something’s not right, because now the tube has slipped out 1/2 inch past the stictches. Last time the changed it one doc wanted to use a larger size and the other wanted to use the same size, and they ended up doing the same size (not sure why.)
At least my oldest friend is staying here with us for a week and she has been a total GODSEND– driving me to appointments (an hour away), walking the dog, cheering me up, and keeping the house from falling nto total squalor. My husband was completely overwhelmed a because it’s more than a month now that I’ve had these drains and in all that time they’ve worked properly maybe 2 days…
Fingers crossed!
Hugs to all,
Kristin
Unfortunately, it is starting to soak the gauze. And it’s Saturday evening. I know this doesn’t count as an emergency, but I am so BUMMED to be sitting through yet another weekend with something going wrong
(pardon the pity-party…)
I guess I’ll have to call them first thing Monday.
Thanks for all the help and support!
Kristin
I’m SO relieved to hear this. I hope the new drain will work properly, and that your dad will soon be enjoying a good meal and feeling much better.
Please wish me luck with my own drain replacement– I go in this Friday.
Best wishes to your whole family–
Kristin
Jennifer, I have to disagree (very respectfully) with Janet/Magic. You need to go in there today and make a MAJOR fuss– you, your mother, and any other family members. This lack of care is endangering your dad’s life and the lack of food and water is weakening his body when he needs all his resources to deal with the cancer.
Do you know have any friends who are nurses, doctors, or other medical people, even in a completely different field? They may be able to give you ideas about how to get some action on your father’s case. Any chance of getting your dad moved to a different floor?
I’ll be thinking of all of you today. Please let us know now it goes. Once your dad gets the corrrect drain, he will get SUCH relief– for me it was just astonishing.
Kristin
Hi ladies,
Thanks for your kind comments. OK, I’ll send that story to Rick, if you think people might enjoy it.
The ONLY good thing cancer has done for me is to make me get up and actually do all the things that people say “someday, I’d love to…” I think I drive my family and friends crazy because I always want to do everything NOW! There are still plenty of things on my list– make more art, go to Montreal and speak French, and get at least some of my books published. I’ve had rotten luck with that (not with the textbooks.)
Marion, on Friday I’m off to a different hospital to have a different doctor put in a new drain. My onco and I are both disgusted with the “don’t bother me, I’m a superstar” aproach of the first guy.
Hugs to all,
Kristin
My husband does NOT want to think about my demise, and I handle all our finances– banking, bill-paying, investments, income taxes, and stuff for our business (we have a freelance writing business.)
So I try to lighten it up. I told him we have to practice for in case I’m ever kidnapped by space aliens. I made an “Alien Abduction Notebook” with a picture of 1950s flying saucers on the cover and started filling in sections for things like bank accts and where they are (3 different banks), insurance, what papers he needs to find in order for an accountant to do our income tax, etc.
Every once in a while we have an “alien abduction drill” and I’ll run around saying something like, “Augghhh! I’ve been kidnapped and held for ransom by space aliens! Help! You need to find the safe deposit box key so you can ransom me with my diamond necklace! Augghhh!” And that does get him checking that he can find the safe deposit box key, or whatever.
I’m not sure I would recommend that method to everybody, but for sure, a light touch helps.
Kristin
I had seven weeks of radiation with Xeloda in fall of 2006, and it worked brilliantly for me. The tumors shrank some, and then remained stable with NO progression for over three years, until just recently. I had only mild side effects from the treatment (lots of heartburn) and the benefits were tremendous!
Transplant doctors know all about transplants– they don’t know that much about radiation. You and your husband should have a talk with the radiation dr. about possible outcomes.
The best of luck to both of you!
Kristin
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
