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RC – what do I take? Items when I get home?
Hi Folks,
What type things do I need to take to the hospital with me for the RC/neopbladder to make life comfortable?
What items do I need the day I get home to survive?
Thank you
PC 7/2/12
T3a/N2/M015 Replies-
Hi Ed,
Thank you for passing on all of your experiences and lessons learned. I’m making a list of all these good to remember ideas. I will keep everyone posted. Ben
PC 7/2/12
T3a/N2/M0
Hello Ben,
I’m Cynthia’s husband Ed. In looking at the responses to your post, you’ve gotten some good advice regarding your hospital stay and the ride home. Some things to remember once you are home:
> Due to the nature of this surgery and the type of diversion you mentioned, your GI tract will part of the operation. Since a small portion of your GI tract is used to form the diversion, the remainder of the GI tract will need to recover.
> You will probably get hungry several times each day, but won’t be able to eat too much at a time. After Cynthia’s surgery, she would often have four or five small meals, almost snack size, rather then three larger meals.
> You should probably stick to easily digested food items until your system is able to process other types of food. Cynthia would enjoy comfort food rather than something harder to digest like steak.
> From your picture and other posts, it sounds like you’ve got a busy family. Don’t forget that your recovery will probably last for several weeks once you are home. Each day you’ll do better, but it could still take four to six weeks before you are feeling even close to your old self. So, your wife will need more help with every day household chores; if neighbors, family, and/or friends offer to help, accept whatever they offer!
> You mentioned that your wife is an RN, which is good because you’ll need some post surgical care when you are home. While your new “bladder” is recovering, your plumbing will be bypassed and the dressings covering the surgical site need to be checked and periodically changed. Your discharge instructions will address post surgical care, but it’s good to be prepared.
It sounds like your surgical team is on top of your case. Please let us know how you are doing and keep asking us questions!
Ed K.
Edward J. Kinsella
American Bladder Cancer Society
Board of Directors – Treasurer/Secretary& Caregiver
Hi Sailorman – BB is my best friend too. Good idea about the pillow.
Catherine – lip balm is an excellent idea. I experience the long wait to get some water after back surgery. I think that was worse than the surgery. :-)
PC 7/2/12
T3a/N2/M0
Some lip balm might feel good if they will let you use it. For the first 16 or so hours, I could not have anything… not even ice chips. They gave me a little sponge on a stick and some mint stuff to wet my lips with.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Forgot about that cough, laugh, ride home pillow…. VERY important!
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Much of it has been said already. Laptop or Ipad for the hosp along with cellphone/charger. After my surgeries, the first thing I usually got after returning to my room was my blackberry from my wife.
Ditto on the robe and good luck with the slippers, my hosp had me wearing slippersocks and they didn’t work well with slippers.IMPORTANT:For the ride home you will need a pillow to hold against your abdomen during bumps or other jostling. This was very important for me and for others who I’ve talked to. In the hosp, they will have one to do the same if you have to cough. Your wife probably knows all about this.
See Ben: I told you they were good!
George I like how you keep minimizing cancer like that. :lol:
Does anyone know where a guy could buy a scene of humor around here, I seem to have a low laughter count. ;)
Best of luck Ben, were all here if you need us.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Now that return home thing.
Being back home will be the GREATEST Thing! This is where your new life begins. My wife and I had 30 years of Fantastic Marriage When cancer stepped into our world, BUT the lessons we learned after surgery Changed the meaning of marriage. We became an undefeatable force of 2! I thought we were in a close and strong relationship before………… pushaw! The bond, created between us, during this whole affair was incredible indeed. We both leaned on each other. Strangely, this [size=1]cancer[size=3] thing brought us closer than anything before. Something about fighting a battle together……So……… When you get home.
I hate them, BUT………. a Recliner is invaluable. It is hard to sit up straight in a chair. It is also hard to lie down all the time. So get out that recliner.
The Bed…..next to the Bathroom! You will be uniquely tied to the bathroom for a while. Bathroom humor will become a new realm of conversation for you. Hopefully this will be on the ground floor.
The friends…. They will not know if it is OK to come over. If you feel up to it, I guarantee they will make you feel better. But a few rules here…. Don’t show them your scar! And hide all the bags and tubes under covers. Look as though you are just relaxing. I had a few friends at the house 3 days after I was released. They were glad to see that I was going to make it, and my wife got to forget about [size=1]cancer[size=3]for a little while. I took 2 naps during the visit…. They were ok with it and so was I.And finally, I have 2 words for you …. Paper Towles…… Oh yeah! Saved us a lot of angst from spillage :laugh: Oh! and that sense of humor should come home from the hospital too!
You are going to do fine. Just be prepared for some changes in your life. Surprisingly, if you look for them, they will change your life in many positive ways.
George [/size][/size] [/size][/size]
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Mike’s certainly right about that one! (as he is with everything else…didn’t want to imply anything) They get all excited about passing gas in the surgical ward. :)
I’ll bet not so much around the house even if your wife is a nurse. :D
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
After a lifetime of hiding it, it’s now time in recovery to celebrate your first FART! It is a sign that your digestive system is starting to function properly. It also means that you will start getting better food than that liquid stuff.
Also your laptop can overheat setting on your blanket.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
Ben
Mike took my BEST ideas! That sense of humor thing is WAY important!
These are the facts:
YOU will be a handful for a while. Apoligize beforehand.
The first few days you will need nothing. That walking thing will wear you out completely.
The last few days in the hosp. will require a renewed sense of humor on your part. You won’t get much sleep, your room mate will be “interesting” and you will be quite bored. But you will also find that reading a book or “thinking” is unusually hard for some reason. Just going to the bathroom will be a GOAL (think of it)I found these things to be most comforting at the hospital; An ipod with my favorite tunes (the hospital is LOUD!) an ipad is now so much more useful than my laptop computer of old (you need to keep us informed :) ) Basic toiletries. I was glad for a shave after 4 days (It made my visitors more comfortable) A COMB! (for obvious reasons…. but 4 day bed head is scarey to visitors)
Yes to slippers and a robe, because you WILL walk! That’s an order!
I found my cell phone was easier than the hospital phone to use, and don’t forget the charger!I know that everyone is different, but I found the time in the hospital to be a chance to relax (weird Huh?) I had been running at 1000mph and scared witless before the surgery, and Suddenly I was forced to slow down and be selfish for a while, and look around at how Good I really have it. I was determined to get better, and I left the hospital feeling really lucky.
Now this may seem weird but, You will have a loose grasp on reality. I thought I was in Full control of my faculties at all times. After I got out I was told stories of my weird behavior by my wife and kids. I thought they visited a little sparingly. They informed me that they were there every day for long periods of time. I guess I figured since they weren’t there every time I was awake….. they weren’t there much.
Now that I’ve made a perfect fool of myself….. you can find your own “normal” while in the hospital.
Best of Luck
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Ben,
Maybe some sort of code you guys can do. For example, if you get grouchy from the pain meds, she can hold up a giant smiley face. Then you can both get a laugh? I don’t know. Whatever you think might work for you. The morphine can be bad for being a jerk (so I’ve been told). :D
Maybe you right a stack of apology coupons. You get grouchy, she takes out the apology coupon and says “That’s one”…. :D
When you both know it may happen there are things that can make it better.
My wife and I were already very close but we got a thousand times closer during that recovery. She was there for me and had my back. I really, really needed her and she was there. Other folks here had similar stories about their relationships.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I’m getting the picture now. My wife bought me a new robe and slippers. I will pass the other info you suggest to her since she will be with me. I can be grouchy when on painkillers so I hope I can control that. I surely don’t want to hurt her feelings. So I better start planting the seeds in my head now to BE NICE. Thanks for the info.
PC 7/2/12
T3a/N2/M0
Comfortable? Hmmmm… Maybe we weren’t clear on how big this surgery is. Not anything you can bring to make the patient much more comfortable.
Slippers would be good because you need to walk, walk, walk. A robe to slip over the hospital gown when you walk would be good. Other than that, not much.
The person there with you should bring comfy things, reading materials and/or silent video games or something else to keep themselves occupied because you will be in and out from the pain meds. They will also need to bring patience. Sometimes, the pain meds can make people act weird so a sense of humor for the caregiver is important. That’s important because it makes you more comfortable because they don’t whack you upside the head when you say some morphine induced nonsense. :)
Good luck with the surgery. It is really tough but it is worth it in the long run.
Did I mention that you need to walk at least three times a day starting day one? The more you walk, the faster you get better and get to go home. Chew gum after the surgery as it has been shown to help get the intestines to wake up sooner. Stay on top of the pain but don’t ride that pain medicine button so hard that you have zero pain because the pain meds can prevent the intestines from waking up. Expect to feel like a truck ran over you and then decided to back over you and do it again. Know that even though you feel that way you HAVE TO get up and walk and that you WILL get a million times better in a matter of steps. Steps, not time, are the key to recovery.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hang on Ben, Mike or George should be on soon to answer your questions on RC. I haven’t had to do it yet.
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)Sign In to reply.
