kristin
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I am SO glad you did this and enjoyed yourselves so much! Looking back on moments like these will help both of you get through hard times. You can just close your eyes for a minute and “go there”– remembering the feeling of your feet in the water, the sound of the waves, the smell of sand, the taste of those awesome Greek pastries… Your body doesn’t know the difference between an actual event and the vivid memory of it, so doing that can really make your stress level go down.
Love to both of you,
Kristin
Oh crud!!
Let’s see… soft food = ice cream, cheesecake, lasagna, fondue, tiramisu….
“My doctor told me to!” Right?
Big hugs,
Kristin
PS If even YOU get worried before visits to the doctor– that makes me feel like much less of a wimp!
Good for you, Kris!!!! Yeah!
Next up: our bile-green awareness ribbons, and the annual Cholangiocarcinoma Marathon!
Love,
Kristin
Linda,
That doctor sounds like an insensitive clod!! And you’re right, you absolutely need a new one. I had really good luck finding my present oncologist by asking other people in medical fields who they would recommend (including my primary care doc, two nurse friends of mine, etc.)
But I think. there is one little grain of truth to what he said, about waiting until the tumors actually give you problems. I really don’t think he meant “come back when you start to die” because there are other milder problems the tumors can cause that give you PLENTY of trouble. This has been my situation. For the last six months, my 2 tumors (just outside my liver) have been wrecking my appetite, making me lose a ton of weight, giving me nausea, and draining all my energy, and I finally decided to start palliative chemo next week. And I’m not nearly, nearly “starting to die”!
So I think that’s what he meant by that. Which does NOT excuse his atrocious “bedside manner”!! And he’s obviously the wrong doc for you, in terms of philosophy and a zillion other things. I’m SURE that in a metropolitan area as big as Chicago you can find someone who will be perfect for you.
Wishing you all the best!
Kristin
The warmth and mutual support in your relationship are so beautiful, and that spills over into all the comments you make here and all the encouragement you give to all of us. You are a true inspiration to everyone here.
Much love to you both,
Kristin
Remember, YOU are the boss– the oncologists are just here to help you. YOU tell them if you’re ready to give up– and obviously, you’re not!
XO,
Kristin
All fingers crossed that he can get rid of that nasty bag! I’ve been trying to convince myself that “my bile bag is my friend” but it’s not working very well… Oh, to be able to soak in a tub, or jump in a pool!
Wishing you the very very best luck!
Kristin
Beware, there’s a lot of real nonsense (to put it politely) out there about nutrition for people with cancer.
A couple weeks ago I had a consultation with a very highly regarded “holistic” MD and his nutritionist because I’ve been losing so much weight. They gave me that “sugar is POISON!!!!!!!” speech, and told me to cut all fruit, dairy, and grains out of my diet. I asked them what (the bleep!) I was supposed to eat, and they said beans, non-starchy vegetables, nuts, and a little bit of organic meat. I can just imagine how much faster that would make the weight come off (and I noted that both of them were painfully thin– like, abnormally thin.) No thanks!
So, yes, you should consider advice from the experts, but also your own appetite and common sense!
Best wishes,
Kristin
To me, it would make sense to radiate that area where the tumor WAS– because that’s exactly where I got my recurrence.
And I’ve heard of plenty of people with other kinds of cancer having radiation where there was no tumor to radiate. For example, a friend of mine had breast cancer,, and besides radiation of the general area, they even did separate radiation of the place where she had had a drain, in case cancer cells had gotten into the drain.
Please take good care of yourself, rest up and indulge yourself in anything that feels good.
Hugs,
Kristin
I have finally persuaded myself that “my bile bag is my friend.” The bile drain is a big nuisance, but with it, I feel like a human being… without it, I would quickly become a sick, miserable, mess and tormented by horrific itching (the state I was in for 2 months before I finally got the drain and bag.) So, it’s not wonderful, but I’m so much better off. It took about 6 weeks for my drain to settle down and behave.
Contrary to what others have said, my bile always stinks– something like rotten rubber bands. Changing the bag helps but the new one starts stinking after a couple weeks too. (Could that be what’s happening in your case?) My sweet husband and lovely friends insist that they can’t smell it, but I can!
Hang in there! Things will get better.
Kristin
The dandelion root tea has a very mild flavor, a little bit like licorice or fennel, so it might not be too difficult to drink even if he’s not feeling well.
Other members will probably chime in with more ideas too.
Best wishes to both of you!
Kristin
Lainy, sad to say, in this part of the country, “hillbilly” is used as an ethnic insult, almost as offensive as the N-word, so I try never to say it… Just so you know!
Bon voyage hugs to you from
Kristin
Oxycodone makes me very, VERY sleepy and relaxed… that’s why it’s one of the top choices of drug addicts. (People call it “hillbilly heroin,” please pardon the expression.) If that’s what Teddy takes for pain, I’m not surprised he’s “slowing down!” But for me it’s very effective, and it got me through the initial pain of the bile drain just fine.
Hope this helps!
Have a wonderful, wonderful time and take nice deep breaths of “up north” air every chance you get!
Much love to you both,
Kristin
