MIDDLE-AGED WOMEN 40-60ish
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El and Momine- does this robot have a camera to look around and find the little bastard giving me so much trouble? Once it's located does the robot cut it out and remove it. Is it a longer procedure?
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Diana...terrible news about your cousin, praying for the family...Glad to hear things are finally happening for you, hope this is the last surgery!!!
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Dianarose, Neither Momine nor I had YOUR procedure, so as far as the length of time...you need to check that with your doc. Yes, a laparoSCOPE is what goes in and has a look around. That will be one of the incisions made so that the scope can be inserted. It will be very handy at taking a close look at what is acting up in there all around your intestines and ureter. I think a separate incision is made for the robot arm that will wield the scalpel, and they can do precision cutting if that is the course they wish to take. I am just thinking that with you (and how confused everyone seems to be) that the decisions may not be all made beforehand. I mean any cutting may depend on how things look in there, ya know?
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Dianarose--Oncs like to leave stuff to monitor cuz it's the only way to know if chemo is actually working. Without something to measure on a scan we have to take it on faith that the chemo is actually doing anything on the cancer cells.The urologist is thinking about fixing the problem--by removing as much of the problem tissue as possible.
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Native Mainer- he can monitor my tumor markers. I want the problems fixed as much as possible.
This diet is making me crazy. I finally had to tell DH to stop eating by me
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Don't blame you.
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Urologist is setting up a consult with a urologist who does the robot surgery. He wants him to take all the bad stuff he can get. I love how he thinks. MO thinks it's just a needle biopsy. Not going to tell him any different. He doesn't need to be in the loope quite yet. I feel like we have to be sneaky to get the right thing done. So screwed up when you think about it. Also said it's going to take some time for my stomach to heal after all it's been through. They are hoping to be able to remove the naphostomy tube. I want to wait a couple weeks after surgery to make sure it worked. Not going through that pain again. I don't mind the tube so much
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Got a call from CVS today. My MO called in Inrance without even discussing it with me first. Not liking this. I have a naphostomy tube, just plain skin and bone, on this stupid liquid diet, no strength what so ever and he wants to put me on something that makes your white count bottom our. Not happening right now. I don't mind starting the Xeloda but it needs to be discussed. Hate being treated like a dam lab rat
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{{{{{Dianarose}}}}}}
Call your MO and tell him/her to back off, and wise up. Not logical to start chemo with an active problem and surgery in the near future. Don't pick up the Ibrance until you are ready to start taking it, if/when that time arrives.
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Native Maine- my surgery will be at Maine Med in Portland. I am going to ask to see one of their oncologist. Time for a second opinion. I did email the current one and told him in no way am I strong enough for Ibrance right now.
When I came home I weighed 114.4 and now 115.8 so 20 pounds to go. Hard to do on this diet but I am determined 👍
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Praying for you, Dianarose, Maine Med is a good hospital. Good idea about a second opinion, too.
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so urologist said Tuesday I would hear back in 24 hours. Called the office yesterday and was told all my information was given to urologist who is supposed to do the surgery and they make their own appointments. Never heard so called this morning. He is off on a conference somewhere and they can get me in for a consult on 10/14. Are you kidding. Been out of the hospital 8 days now they want me to wait 15-16 days more just for a consult! Called my urologist and left a message of course that he needs to find someone else. I will be starved to death by then or the cancer will grow to the point of a blockage where liquids won't pass. Don't even know what to do. Called primary doc and she's out today. Having a meltdown
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Don't blame you sweetie! Gentle hugs....
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Dianarose, That is outrageous. You have been having pain and trouble all this time and it seems more than a touch sadistic that they would leave you in that state for yet a few more weeks. Maybe try calling again when doc is back, so that he might o.k. a time to slip you in to see him sooner? Who is in charge of your nutrition during that interval? Are you just supposed to wing it and eat mayo from the jar with a spoon? You need some calories, not just liquid.
I am happy to report that I am having continued success with my proposed active surveillance on my thyroid. The endocrinologist that I hate basically told me before that if I wanted to just watch my suspect thyroid, that he would not be comfortable with that and he'd have to refer me to another doc. Well, I saw my MO today (and I actually like him.) He had ordered all but one of my previous ultrasounds on my neck and after I filled him in on my latest saga, he agreed to keep the monitoring going. That was my last base to cover, so things are finally working out for me.
So, p.s. D-rose, there are a few good docs out there and I hope you can get one to start helping you real soon.
Another, p.s. Diana: Can you chug down a bunch of Ensure?
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Diana that's awful, praying you get some answers quick.......is your insurance Medicare???
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I did get a call late today that the urologists partner can see me on the 6th. DH called Lahey in Boston. Talked to the urology dept and faxed all my reports. They should call tomorrow.
Primary doc said to eat some thin apple sauce. It was good. I made a cheeseburger soup for DH and I strained some broth to go with my applesauce . Mornings are horrible. Full of painful gas🙁.
El- ensure is so nasty. Bought some homemade ice cream and made a shake. I save the oatmeal or cream of wheat for night time to carry me through. Sick of jello and pudding.Other then both and strained soup this is my diet. I can have juice. Tried one purple v8 veggie juice but it was nasty.
El- I am happy you got the results you have worked so hard to get. It just shouldn't be so hard! I want to see a new oncologist too. Not liking mine so much anymore.
Loral- we have great private insurance and it's a PPO.
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Dianarose, Do you have a blender so you can at least make smoothies? You could thin them down even more with water or milk. Would the dietitian ok that? You need to get some real protein. We have a Blendtec, and once in a while I will add a hard boiled egg to my smoothies. The Blendtec is like an industrial strength blender and it totally liquifies the egg and just about everything you put in it.
Yeah, those other V8 juices are really NASTY!
Lita
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Welcome, Lita57! I was also thinking Dianarose needs vitamins and protein. That is why I thought of Ensure, but she is right that they don't taste that great. (My mom liked the Vanilla one, but I did not care for it at all.) Although a blender makes everything small going in, it still depends on how bulky and fibrous it going through the intestines.
Dianarose, How is it that you can eat oatmeal? The super runny kind? I mean it still has quite a bit of fiber. I thought they were trying to keep you low-fiber so less potential for blockage. I had to be on the low-fiber diet for some weeks after my CRC surgery, and there were still quite a few things I could have, but your diet sounds more restrictive than that even. Did you get a list of CAN and CAN'T have items? If not, ask for a list of what you CAN have because maybe there are more than you think. I mean, if the doc added applesauce, maybe there are a few other things that would be o.k. too.
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I totally agree w/elimar. Get a list of "can and cannot eat." (BTW: I thought about the fiber thing, too, El.) But if you can eat applesauce and oatmeal (both of which have some fiber), maybe you can eat some other things.
Lita
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Diana...I'm glad you have good insurance, I buy mine and it is a PPO too... Why I like it is I don't need referrals and if I want to change Dr's I can. The reason I asked is I thought maybe medicare was preventing you from doing just that..
Glad you are feeling better.
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If you google full liquid diet each site says something different. Primary doc is supposed to call today to see just how narrow the passage way is in the small intestines. To add some puréed food would be great. A true liquid diet is supposed to be something that starts as a liquid or will melt to a liquid. Why the oatmeal and cream of wheat is on there is confusing. Some sites say you can have scrambled eggs but doc says no . Some sites say puréed fruit and vegetables are ok but hospitals menu says no. As hungry as I am I would rather her check how big the passage way is. I would rather avoid getting my stomach pumped again
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Diana, that is crazy. So wish you were here. I bet I could get you in with Dr. Geek, my robot guy, right snappy.
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Momine- where do you live?
Doc looked up report from endoscopy and it said it was a narrow opening but he did get the scope through. Also said I started wretching when he pulled it back through. So glad I don't remember anything . So I have two appointments next week. One in Portland with a urologist who does the robotic surgery and with one at Lahey Hospital. One is Thursday and the other is Friday. I want to choose. I also need a gastroenterologist because there was two blockages. One in the intestine and one as the stomach empties. Report says there is thickening there. I am trying to stay hopeful but the more I learn the less hopeful I am
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I am between Denmark and Greece, but Dr. Geek is in Athens, where I am at the moment. People do come from abroad, including North America, to be operated by him
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{{{{{DianaRose}}}}}
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nativemainer- the leaves are still mostly green here in the southern part of the state. What about where you are
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Dianarose--leaves are just starting to turn here. Got some nice reds coming on. Lots of leaves getting blown off already, though.
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You may hate Pinktober but allow me to ask that you to give encouragement this month to some of the newly diagnosed. I know I have not visited those threads for a while and I will try to do a bit of "outreach" this month. Honestly, I don't think about BC that much anymore but I think I can spare a few moments if it will help a full-on BC freakout. We all have an extra few minutes to do it, don't we?
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Elimar - great advice. I've been trying to go to the "active threads" section more often in the last month and pop in with a comment if I think I can help one of the new 'members'. This site has been so valuable to me that I want to pay it forward as much as I can.
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Good idea. I remember how much I depended on this site to get through the early days of panic and fear.
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