Bladder Cancer

[livingwith]

I am a 39 yr old women who just found out that I have bladder cancer and that I will have to have my bladder removed. My dr is surprised due to my age and that I am a non-smoker. The good thing is that I do have a great support team with my family and friends. the funny thing is that my boyfriend has been fighting this cancer for the last 2 yrs and is finishing up the last of his treatments. Right now they believe that he is in remission.
The good thing is that I have the best dr in the New Eng...Read the full article

[franinlv]

Yes Bladder Cancer / urostomy does change your life, and the 1st 1-2 years will not be totally a cake walk, but you can make it.

My surgery was April 2008. I had very little time before the surgery. My tumor removal was in March, 5 days after discovery of the tumor from Radiology exams, then 1 wk after the surgery, I was told, 2 days later I was at UCLA for 1st visit, and 23 days later I was in for surgery.

Be sure to advocate for yourself. I know this is a scary time for you. I was scared, but I got busy... did all my research and found all the information. The surgery is a little more entailed. There are multiple things done. Part of it is female and lymph nodes to make sure the cancer has not spread, so be sure to ask your physician for full information.

The post op can be hard, but it is survivable. There will be embarrassing moments as you learn which appliances work for you, which the ostomy nurse will go over with you after the surgery. The most important thing is that your family is there to support you.

Things to help:
1) from the Urostomy sites, there are links to the vendors - they will send you free samples to try out - besides the regular pouch - remind them to send the night appliance so you can truly give their product a try.

2) Get a back-pack ready for when you are ready to venture out of the house - you can have your purse and supplies and change of clothes out and you or family member can carry and it won’t be embarrassing.

3) In the hospital, if you know you have certain issues like
a) small veins - DO NOT LET THE TECH USE A LARGE NEEDLE /TELL THEM PED NEEDLE ONLY!
Don't let them take the blood unless they bring it - as they'll be in middle of the night.
If lab tech fails to do so, then report to your nurse and in the morning to the Lab manager.
b) needs for hygiene help - Keep ringing the call button if they take their time getting there
Do not expect your family to be able to deal with the surgery wounds the week you are in the
hospital.
c) food is not acceptable - too rough for your digestion "like-pizza" - my 1st meal.
Ask for something else.
d) Keep a log of who took care of you on what day - take a notebook/pen to the hospital with
you. Track their performance - If they were good - send a nice note to the director and give
them praise, if not, then send that list separately to the director. Their job is tough and the
good ones deserve to be complemented.
DO NOT HESITATE TO REPORT IT TO THE DIRECTOR OF THE DEPT.
Do not report to the charge nurse. If asked why - my response (as I work x a hospital too) was
people cover for people, and I wanted to be sure action was taken to correct the situation.
e) Since you'll be in 5-10 days - be sure to take things along to help you be comfortable, like
specialty contoured pillows, small battery powered fan (for if you're warm), and a small book
light if you'll be sharing the room and want to read - and you may. (which means of course
bring a book, or maybe handheld video games like a PSP. (cell phone/charger) - You won’t feel
like touching a computer - believe me... and I'm a geek.
f) Take an extra empty tote bag, in your stuff - as you may need it on discharge for things you
get during the hospital stay
4. If you are not able to go back in 6 weeks after the surgery – do not hesitate to tell the doctor. Don’t go back until you are ready – I was out from April 23 to Aug 1 for my surgery – then I was confident enough to go to work and not worry so much. It will still be difficult, and again the duffle bag with your stuff will be necessary with changes of clothes and equipment – just in case.

Whoever your significant other is, they'll need to be there for you the first few weeks, especially for assistance with appliance, as it is still recovery time and even though they may be scared too, remind them that you need the help initially - eventually, you'll be able to do the weekly changes yourself without help, but due to the surgery you'll need help initially.

One of the things I'd talked to the Ostomy nurse about is how they show you to use the appliance, they usually use the "paste strip" first, but the Ekin seal is a better hold for the appliance, with fewer leaks. All will depend on how tender you are afterwards. Have family around that can help advocate with the hospital staff. The paste strips for me didn't hold as well. You may find initial the appliance will need changed about ever 2-7 days for you - everyone is different.

You will have accidents initially, so take change of clothing and supplies where ever you go, which you may not feel like doing for the first few weeks. This will be frustrating and it is ok to feel like crying occasional. We all do... You will not be any different. Surgery is always tough, but if you get up and walk some every day, even if its a short 4-5 house up the street and back - with family around you too, then you'll feel better and better each day. About the 6-8th week you'll notice you can do things you were not doing before (post operatively) more comfortably.

Food is a big issue. They will give you food when its time after the surgery, be sure to watch what you eat initially. They may try regular food. I was happy on soft foods for a about the 1st month and my appetite was down then too - so if you can yogurt and cottage cheese don't hurt, along with cranberry juice and vitamin c supplements. As a Urostomate, you will need more Vitamin C than the average person to keep your system acidic. I take it in the morning and evening and drink cranberry-ginger-ale mixed drinks.

The 1st year you will have to watch what you eat, there are foods that the ostomy nurse in your area can give you. You can even go to a ostomy support group in your area. call the hospital where you are getting the surgery to see if they have a list or the ostomy nurse, or wound care center. They usually can provide that info, or the American Cancer Society can.

There are on line support groups out there you can sign up for and those of us that are urostomates will be happy to help you through.

URSOTOMY EMAIL SUPPORT GROUPS
They are: [moderator note: e-mail addresses have been removed].

Both are there and happy to assist newbies through the hurdles.

It's been 17 months now and I square dance, and appreciate my life so much more. I have my routine and my setup for everything in the bathroom... the special chair to sit in after the shower, which may be needed in the shower initially. I was dizzy the 1st shower I was allowed after the stitches healed.

Also, be ready to sleep on your back for a while. You'll be too sore to sleep any other position initially. That too changes months after the surgery.

We have some advantages, and as long as you take that part of it, and look at the positives, and know you will have the occasional "pity party", it's ok - WE ALL DO.

ADVANTAGES:
1) Sleep through the night - as you'll have a night appliance for sleeping, so no more urges to go 2-5 times a night.
2) You won't do the potty dance in a public restroom any longer.
3) With a leg bag, you can travel longer than the average traveler in a car
4) If you have a male significant other, there won’t be as many fights over the toilet seat any longer.

[CrazYhorse]

That is ironic that you both have BC. and yes 39 is young but I was 53 and I considered that young. I don't know what and where your boyfriend was treated. The best thing to do is get all the information about your Stage. I will share 2 very good links with you for that http://www.blcwebcafe.org/ and www.oncolink.com. The best hospitals to be treated at are the teaching hospitals in the city that have a good reputation and an excellent cancer center. I was treated at the Univ of Penn in Phila a great hospital. Always and I stress this get a second opinion just to play it safe at least you know if you bladder needs to come out you have a couple opinions. Then you as the patient have to pick your hospital where you want to be treated as you are as much part of the treatment as the team of Dr's you choose.
I am 55 now and 28 months being cancer free and I just live my life day by day and I am at 6 month checkups now and I never miss any.
Sorry that this happen to you at a young age but now you have fight and deal with the cards you were dealt. Cancer does suck but BC isn't a death sentence I have met many people with anywhere from 1 yr cancer free up to 18 years so hang tough. I wish you the best and will be looking for your updates. Best of Luck CrazYhorse