What do I need?

12 years 9 months ago #38764 by mmc
Replied by mmc on topic What do I need?
Oh my. Never had that problem with the leg bag.

Sounds like a job for duct tape! :)
...or a different type of leg bag with a better method for draining.

I got confused when I saw Indiana. I thought he had a neo also until I saw that.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 9 months ago #38762 by BillM
Replied by BillM on topic What do I need?
Mike,

From Flyer's first post I'm assuming a full tilt neo. My first TURBT and the big one, I had foleys and used the small leg bags. The night before the cath from the big one was supposed to come out, I went to a play for one of the kids at school. Either getting up or moving around, the damn drain cap popped of in the gym, friction don't work with liquids. The leg bags hide well but seem to be for very limited use.

Flyer,

Gald your getting a little relief tummuy wise. Don't you get the cath out this week? Apple is pretty good about being helpful with their products. We have a netbook that was a gift at the start of the journey and it has been through the wringer.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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12 years 9 months ago #38761 by mmc
Replied by mmc on topic What do I need?
Glad your stomach is better. Too bad about the Mac book but it sure was nice of them to waive the bill!

Sorry to hear about the problems you are having with the catheter. I don't have an Indiana Pouch so I don't know what to suggest to keep it from popping off. I don't quite understand how that happens. I thought there would be a balloon to keep it in place.

Did you mean the drain tube of the leg bag popped open somehow?

Hope it comes out soon anyway!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 9 months ago #38760 by GroundedFlyer
Replied by GroundedFlyer on topic What do I need?
What a wealth of information! And with a sense of humor.

I am scraping the bottom of the box of patience for getting my catheter removed. I needed to go to my employer to ask for an extension of my FMLA leave. So I tried the leg bag again. Crossing the bridge into Indiana, the tube popped off soaking my leg. One more full day and even wet diapers will certainly be an improvement over the bag.

My stomach is feeling better as I add some of the foods suggested and have started reprogramming my MacBook Pro again. I bought it to have communication while in the hospital but somehow in the confusion of getting settled into my room, the two-week old computer was dropped on the floor and a pitcher of water spilled on it.

For all the good things that can be said about the Mac, it is not waterproof. Totally fried with a repair bill of over $1200. However when the situation was explained to the people at the Mac store, they waived the bill and repaired it free. No wonder those Apple customers are so loyal!

Now all I have to do is learn how to use it.

Flyer

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12 years 9 months ago #38754 by Cynthia
Replied by Cynthia on topic What do I need?
Mucus is an interesting subject ask two people what foods cause thiers and you will get two different answers. I know people that blame it on milk, brocolli, or in one case MSG and on and on. They claim everytime they eat Chinese wham the mucus is a big deal. After a Radical Cystectomy it is a good idea to eat small amounts and to introduce foods back slowly so you can see what will affect your intestines or cause extra mucus. Some people find that they can return to the diet they had prior to RC others have things they just can't eat after. The nice thing about the mucus is that with time it will deminish it will only be a problem for most in the first year or so.

You will be given instuctions on training your neo, I have an Indiana but they both have to be trained. My husband went to Walmart and bought three inexpensive alarm clocks at first I was training mine on a every two hour schedule. At night they were set at say 12,2 and 4 and I woudl line them up. I hated that I was waking my husband up but he was very nice about it. It reminded me a bit of having a new baby but it soon passed and I am now go every four or five hours.

Hope this helps

PS I am in the East will someone mail me some patiance please! Even if it doesn't work as well up here it is more than I have now.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 9 months ago #38753 by mmc
Replied by mmc on topic What do I need?
We can get it by the pound out here in Colorado. We're not supposed to send patience to the northeast though. They say it doesn't work there. Works fine in the southeast though. :)

We can even get the cheap boxed of patience from China at Walmart in the continence products section.

Good one George! Congrats on your 500 mark.
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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