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Stage 3 and no insurance

9 years 5 months ago #38647 by Patricia
here's another resource for prescription drugs for non-insured

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9 years 5 months ago #38634 by Patricia
Sorry Linda..my response was meant to be helpful not hurtful to you...never would i do that. I think you gave good ideas on where to seek help.
Its just kind of apparent to me they do not have a direction yet and a diversion was not even mentioned. I just didn't want to confound a situation when they are looking for finanacial aid
and we don't know what the outcome will be...will she even be eligible for an Indiana, a neobladder or perhaps an ileal conduit. All those have different needs for after surgery.
I would never say there is no room for hope. Has to be room for that. I'm battling breast cancer and you have a met to the lung.....God i hope there is hope.
I sure didn't mean to step on your toes. I have great admiration for you.

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9 years 5 months ago #38632 by sara.anne
This is what makes this forum so valuable to many of us. It is one thing to be told by a nurse or doc what to expect and how to handle it, but to be able to hear from those on the front lines and to ask them questions directly, is worth much more.

Lynda, I hope you save these hints somewhere for the next time someone is in this situation!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 5 months ago #38631 by Lynda
Wow PAt! Of course kind, grade,stage is important. But so is hope, help, and maybe a voice saying there is light at the end of the tunnel? The best drs. and hospitals are great to have, but it doesn't mean that you'll mentally and physically recover better just by being treated at such with no idea what comes next. No one has all the answers and I don't think I'm even close, but I will not sit by when someone asks a question I have experience in. My alarm clock works just fine too, but when I'm up and moving around, that cord sometimes just doesn't reach all the way to where ever I'm at. This watch (BTW - Thanks MMC (mike) for mentioning it)has been a lifesaver for me and made my training easier. I'm only a year out from my RC and now dealing with Lung cancer (met.) and I'm still finding ways to live my life under the cancer cloud. If all anyone needed was facts, and only facts, we wouldn't need this site, just one person sitting waiting for the questions to roll in. BUT all of us are here because we know what it's like to hear the words, "You have bladder cancer", and want to make the road smoother for the next person.


3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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9 years 5 months ago - 9 years 5 months ago #38625 by Patricia
Linda..good advice on seeking counsil from the Dr. and Hospital also.
As far as advice on the diversion..we do not know yet what that may be and i think its kind of one step at a time right now. Every one is different. Personally i did not need all the stuff you had. No pads, no extra stuff..my alarm clock works just fine and truthfully my pouch will tell me when to cath..it contracts.
The training took me 4 weeks to get to 4hrs and about another 3 months to get it to 6 hrs at night..and now 8 yrs later i can go all night without getting up.
I think getting her squared away with financial assistance is primary right now and dependent on where she is medically and her options for diversion we should maybe address at a later point.
If indeed she is Stage 3 invasive the course of action would be chemo first and many of the drug companies will help with financial assistance if you ask....lets hope they will.

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9 years 5 months ago #38624 by Lynda
Kimbob -

I know exactly how you feel!! I went thru Bladder cancer and am now going thru chemo without insurance. My husband and I are self-employed and WERE in very good health, but even then the premiums were just too high.

You will find an answer for any question you ask on this site. Here are some of my ideas for you:

Start right now and go to your Dr. and let him/her in on your situation. No Dr. (at least the good ones) will turn you away and will help you find a financial deal that works for you. Also go to the financial center at the hospital and tell them the same thing. They'll start a process with you to find alternative means for payments and help with discounts. These will take time, but you should not delay treatment - keep pushing forward. You two together are your best advocates and you determine what happens and sometimes how fast it happens.

Home care -

This is what I did after RC (radical cystectomy) -

Recliner - if you have one great. If you don't borrow or buy one. This will be the easiest place to rest, sleep, eat, etc.

Bed pads - Depends and I think Poise have a bed pad (big flat thing like for under a baby). Get some to use on the recliner, and if you are brave enough to sleep in a real bed. These are disposable and can make a rough night much better. I have used these since I came home and never had to change the sheets in the middle of the night.

You will probably come home with a sewn in catheter in the stoma and a couple of drains from the kidneys. If the hospital sends you home with a couple of basins (about 10 x 12 x 6) put all the drain tanks(!) in one of the basins and then into a cheepee recycling grocery bag with handles. Much easier to haul around and discrete when sitting in your recliner entertaining visitors.

Food will have different tastes than you are used to. East what tastes good, even if it's icecream for breakfast. You will need lots of protein - get it where ever you can. Eat easy foods that are not going to cause digestion issues. A bite or two of your favorites if you feel up to it, but don't overdo it. YOu don't want back door issues now. LOTS OF FLUIDS (especially water). Letting yourself get dehydrated is going to cause you MAJOR problems with your pouch (if you get one - and I think the best solution for women).

Once you are thru the tether stage, you'll start training. Your Dr. will probably say to cath every two hours. Even tho' this means only sleeping every two hours, do not bend the rules and use a foley catheter at night. This will slow down the training and keep you home bound longer. And you'll aready be cabin feverish. There is a great watch on the market made for children to help them learn to not ignore the call of nature (4-5-6-7 year olds). It has a auto-reset timer and very easy to adjust. It's called a Vibra-lite 3, I made leaps and bounds in pouch training with this little gadget. About $60, worth every penny.

Since you're about to try going away from home - during the day I use a maternity nursing pad over my stoma with some 3M paper tape (no adverse reaction). Protects the stoma and catches any drips, and if you start to leak you will feel the wetness and can get to a bathroom. At night I use a poise pad sideways, just tucked into my underwear.

Catheters - If you got an Indiana pouch, you now have a "clean "system. Because of this, you can wash your catheters and reuse them. If you find a source that will supply you enough to use a sterile oneevery time, go for it! BUT if you have to wash them, use a anti-bacterial DISHWASHING soap, hot water, let them air dry on a towel and your good to go. When I travel, my kit contains: clean catheters in a ziplock freezer baggie, a regular ziplock baggie for the dirty ones(bring them home to wash them, throw the dirty baggie away), extra tape, extra nursing pads, one nighttime pad(in case). It all goes in a cosmetic bag and NO BODY KNOWS!!!

Food - you may find that foods that you ate before that never gave you a moments problem and now a problem. Dairy, citrus, specific fruit or vegatable (mine is brocolli), will cause leaking. Everyone is different, you'll learn what yours will be as time goes on.

I know this sounds overwhelming and I totally know how you feel, and everyone else on the site will have ideas and ways to get thru and move on. Keep asking questions - we're here for both of you.



3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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