Home Forums All Categories Muscle Invasive Bladder Cancer Here we are night before RC

  • Here we are night before RC

    Posted by gator444 on March 27, 2009 at 4:16 am

    As you can see we have gone from new person to one of the home team. I don’t post often but I do read alot.I am sure when we get home I will be on here with ???s. Thank you for this helpfull site. I read alot of post to Gator because he doesn’t have patience to to find answers to his ??s. I on the other hand like to read and research I suppose it makes me fill like I am helping him. We are going in the morning to get RC,opted for indiana pouch, scared to death but finally filling like we are getting this resolved. I f anyone has tips for when we get home from hospital I would be happy to hear them. Will not be back on til after hospital stay But this will be one of the first things I do. Thank you in advance for your good thoughts and prayers. You have all been in ours.

    walttracey replied 13 years, 8 months ago 10 Members · 17 Replies
  • 17 Replies
  • walttracey's avatar

    walttracey

    Member
    May 27, 2011 at 3:59 am

    definately a long time since i have been on here. Gator is my husband. I’m sure no remembers but I am back. He did well after his rc on 03/29/2009. Stayed in hospital for 8 days. There are alot of things I wanted to post and ask at that time but, just took care of him and tried to easy his worry. His Dr. told him he was doing amazing at every appt. He really seemed surprized that he was not having problems. Not really sure where to post at now. because he does have questions that I know some body out there has had to deal with. The site is great by the way. Love the upgrades. I had to register as new user for us. Couldn’t remeber name or PW. Don’t have same email so just started over but was lucky to find this post I put on. And Pat your site was a god send for Indy pouch info. Thank you all… :cheer: :unsure:



    Diag. BC 8/2008
    2 TURB 8/2008-12/2008
    Diag. T3 BC MI
    RC 3/29/2009 Indiana Pouch
    Diag. Metast.BC-Bone Cancer 6/21/11
    Hip Frac. 7/7/11
    Hip Replace 7/12/11
    Nupagen & blood trans. 7/29-8/2/11
    10 HD RAD treat. HIP C2-4
    Death 12/3/2011
    Age 69
    (Walt) Gator Bottoms.
    My wife Tracey
  • melodie's avatar

    melodie

    Member
    April 2, 2009 at 9:22 pm

    WOW ! I’m impressed you are already home from the hospital. I was in for 10 days. My surgery went well but due to all the pain meds, I had little appitite and so my bowels wouldn’t cooperate…and we all know they won’t let you leave the hospital until you pass gas and have a BM. When I did eat, whatever I eat came back up so I couldn’t get my digestive system to settle down until day 9….woke up on day 10 and announced to the doctors that i was going home. Several times while in the hospital and after I arrived home I was contacting Pat to calm my fears. My RC was in July 07 but now it seems like ages ago and I feel like a pro…you will also, in time.

    Easy to digest foods is key. You really have to be very picky about your choice in foods. Chicken noodle or veggie soups are good. One friend brought me some frozen fruit and a blender with yogurt to make smoothies…that was good for me as long as I didn’t get too much citris…even now, too much OJ or pineapple juice will irritate my system. Pat suggested scrambled eggs…good protein. Peanut butter, also an easy and good source of protein…some mornings a spoonful of it was all I could manage. I love brocolli but found the pouch didn’t like more than one serving of it at a time. As others have said, you will have to be cautious and carefully test foods to determine what works well for you and what doesn’t. I suggest you take it slow and esy for the first couple of months…and forget fast foods if you’re inclined to indulge in them.

    I feel I must apologize to you because I did tell you earlier about my website and I fully intended to get there earlier this week and add some additional information to be helpful to you. I am going to go there now and work on it in the hope that I can be of better assistance to you. If you want to contact me personally there is a place for that on my website and I would be happy to answer any questions you might have…I have found that the forum offers great information from warriors who have been there and done that…and we relate to some more easily than others….anyway, my site is: http://www.bladdercancerwarrior.com I hope to work the site during the next few hours and update it with more details on life with the Indy pouch…check it out if you feel up to it. Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • stephany's avatar

    stephany

    Member
    April 2, 2009 at 4:38 am

    I’m so glad you’re home! And the bowel issue WILL get better, although it’s all you can think about now (except for the pain control).

    The nurse story was cute. I remember the first time a nurse was told to catheterize my husband. I don’t know if she or my husband was more embarrassed when she reached for his penis, when he had a navel stoma…..

    Try oatmeal, or another whole fiber cereal. We had a discussion on the list last year, and someone also suggested a whole grain cereal from Canada.

    Stephany in Iowa

  • mmc's avatar

    mmc

    Member
    April 1, 2009 at 7:16 pm

    Be careful of things like naval oranges and artichokes. I learned the hard way about the staples used to connect my intestine back together. Wound up with a blockage that put me in the hospital for a few days. Luckily, it cleared on it’s own (with meds and no food for three days) but surgery wasn’t required.

    I had eaten two naval oranges and all the fiber from oranges blocked up right at the point of the resection. Doc said he had someone do the same thing with strawberries but the way he described it they hadn’t really chewed much.
    He also recommended chewing more than you think is necessary. Most of us don’t chew our food well enough.

    For a while, stick with very easy to digest food. Things need to heal so you don’t want them working overtime processing food. That’s also why they say many small meals instead of fewer large meals for a while.

    I found I was kind of sensitive to some foods for a while after the surgery but I can pretty much eat anything again. My RC was Oct 8, 2008. Dairy got worse for a while but then settled back down.

    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.
  • gkline's avatar

    gkline

    Member
    April 1, 2009 at 7:03 pm

    Now it is all over, and they let you out! Yippee! Now it all begins….Really begins.
    Before I got bladder cancer I had absolutly NO clue about my body. I ate what I wanted, and acted as if I was 18 when it came to listening to my body.
    Then i came home from the hospital and I couldn’t hear over the yelling my body throwing at me! So, I listened. I experimented with food that I always ate before and found out that they no longer liked me.
    As time goes on you will find that these early raging body functions will calm down. I found that I never considered certain foods as daily necessities.. bananas, orange juice, and lots of fluids.
    I wish you well and gald to hear you are home….You WILL get better!


    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]

  • gracie's avatar

    gracie

    Member
    April 1, 2009 at 4:46 pm

    Hi Nanny,

    So glad to hear you’re home. This is the time in your life when you need to be really good to yourself. There is a lot of healing that needs to happen. I was told that eating a sufficient amount of protein helps with the healing.

    As for the bowels and BM’s. Had an incontinent issuein the hospital but it settled down after that. Your body has gone through a lot. Of course on the other end of the spectrum, they don’t want you to strain so try to keep things moving. I took Sennekot or Colace as needed. But if your incontinent issue doesn’t resolve itself I would definitely let my doctor know.

    As Pat said, the banana a day was a habit I got into and I’m still doing that today.

    Just know that you will heal. Your body wants to heal. You just have to allow it to do what it naturally wants to do.

    As Melodie said – one day at a time. And celebrate the progress you are making as you go along.

    Gracie

  • 's avatar

    Guest
    April 1, 2009 at 3:36 pm

    Hi Nanny…….glad you’re home. The first few months after cystectomy are a learning curve…what you could eat before you react to now….bowels are angry and , of course, have every right to be!!;) It just takes a while to figure out the culprits.
    I found i was one way or the other…couldn’t go or couldn’t get to the bathroom fast enough. I kept a diary of what i ate…but quickly learned my culprits…mine happened to be milk products which produced not only mucus in my new pouch but also diarhea. With some people its citrus……Just hang in there and try to figure what the offending food/drink is. I had a lousy appetite when i first came home but i also knew i needed to eat the right categories…..one little trick the stoma nurses told me was to eat a banana a day…not only a good source of potassium but good for bulk in the intestines.
    It will get better Nanny………so glad you’re home.
    Pat

  • mmc's avatar

    mmc

    Member
    April 1, 2009 at 1:54 pm

    Congrats on getting out of the hospital early. How many days were you in?

    I had an ileus complication so I couldn’t go at all for a week. Trust me, a day or two of stool incontinence is a better thing that an ileus.
    My doc had said there might be a couple of issues with stool after the surgery due to the intestinal resection. If they used large intestine it could be a bit different than small intestine resection.

    Do NOT overdo it once you are home. Rest, rest, and then rest some more. Eat small amounts and no big meal for a while.

    Pain meds can interfere with bowel function also so you do want to be careful with that.

    If you have more stool incontinence issues, you should let your doctor know. Not from an “oh my, there is a problem” standpoint, just that he/she should know about it.

    Best wishes for a speedy 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.
  • 's avatar

    Guest
    April 1, 2009 at 1:36 pm

    Hi!

    Glad to hear you finally had surgery! Hope all goes well with your recovery – just remember to take it easy and look after yourself.

    Betsy Mae

  • quiltingnanny's avatar

    quiltingnanny

    Member
    April 1, 2009 at 12:13 pm

    Well here I am about to go home from my RC. It is sooner than I thought it would be and I feel totaly inadequate to take care of everything, but thhey said they would have a nurse out to the house tommrow. Since I had to go to a hospital so far away from home I have to get help from the local hospital system which had been my first choice. Can someone please tell me if the incontinence of stool will continue or was it a one day thing? For whatever reason this is now my number one fear. I thought I could handle what this thing threw at me but that is too much. I also can’t wait to control my own pain meds, at least if I feel the need for it “10 minutes early” I can have it. You get the feeling they think you are already becoming a drug adict. One funny thing that has happened – my overly intelligent nurse wanted to check my vaginal area and said ” ohhhhhhhh your folley fell out”. Bobbie who is going home in the rain in GA today.

  • melodie's avatar

    melodie

    Member
    March 31, 2009 at 6:20 pm

    Have prayed that Gator’s surgery went well and recovery is happening as it should…takes time…lots of time…but after surgery, you have lots of time cause you don’t feel up to doing anything but allowing the body to heal itself.
    Patience is a real virtue and that is usually learned following a RC…take one day at a time. Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • eddiek's avatar

    eddiek

    Administrator
    March 28, 2009 at 12:34 am

    Gator444,

    Some items to consider:

    > Following RC w/Indiana pouch, the intestines will be adjusting from the prep for surgery, the surgery, and the recovery.

    > We found that frequent, small, easy to digest meals were better than fewer large meals; 5 or 6 a day, more like “snacks”. Foods like eggs or buttered pasta are good; even jello or shakes.

    > Intestinal pain during recovery is not uncommon, so avoid foods/beverages that would normally cause digestive problems; bland is probably best, just like if a patient was experiencing a GI virus or “flu”.

    > Exercise helps with the recovery process, so make sure that he keeps going when he returns home.

    > Lots of fluids are also good.

    > The new “bladder” will need to be “trained” to hold an increasing amount of fluid. Your doctor will advise on a schedule for how often the “bladder” should be emptied. Since this also must be during during sleep, consider buying some inexpense alarm clocks that can be set to different times; avoids having to reset one alarm clock several times each night.

    Surgery and recovery can be a hectic time, so please keep us posted on his progress when you are able.

    You and your husband will be in our thoughts!

    Ed K.


    Edward J. Kinsella
    American Bladder Cancer Society
    Board of Directors – Treasurer/Secretary

    & Caregiver

  • gkline's avatar

    gkline

    Member
    March 27, 2009 at 8:56 pm

    HOW did you know I was a GK ? I love the people on this site. They are so much more in tune with themselves.
    I DO have one more thought:

    YOU HAVE EVERY RIGHT; No, an obligation; To be a little Selfish. I put aside many of my, supposed, PRESSING OBLIGATIONS so I could focus on the important things; like family, and ME! We didn’t want to be too selfish, but Just a little

    I almost stopped coming to this site as my life started to return to normal. But I was pulled back in by a post that made me think. Someone mentioned that after a while people DO move on. I was drawn in by the new, and VERY SCARED members who are confronting this monster. If there is anything to my rambling, VERY non technical stories and anechdotes that can be helpful or humorous, maybe I can be of service. It got me through.


    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]

  • mmc's avatar

    mmc

    Member
    March 27, 2009 at 7:58 pm

    Great post GK.

    Before my surgery I was strictly business and too into my thing to worry that much about others. That was a mistake. I put together all of our papers, did power of attorney’s, told her who to contact about what if I didn’t make it, etc. Like I said, strictly business. I looked at my situation in a bit of a detached way because that’s how I deal with things. I should have thought more about how she and our grown kids process things. 20/20 hindsight….

    After my surgery, my wife and I also became much closer. She was there constantly and since she’s a nurse she helped take care of me too. She also made sure the staff in the hospital were doing their jobs (but in a good way).

    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.
  • gkline's avatar

    gkline

    Member
    March 27, 2009 at 7:31 pm

    I don’t know if I should be answering this post (the patient ) or my wife (the worried care giver) or not. I can’t help remembering the days before the surgery. My wife and I became so much closer. We talked about everything; our plans for the future, how much we loved each other, how much closer this awful disease had made us become, and how we were going to BEAT the crap out of this disease TOGETHER.
    I know we had terrable fears. My wife wanted to share her fears. I did not want a single negative thought to be spoken of shared. I was damn well going to beat this and any talk of failure was verbotten. Looking back on this, I could have been a little more compassionate, but frankly, I was scared to death! My wife was also scared and felt trapped trying to keep it all inside.
    I know this sounds really strange but I had the easy part! I went to sleep and she worried for 11 hours. Thank god for the three girls and a NEW friend with a BIG personality who barged into the waiting room and stayed all day. This woman told me the day before surgery that she didn’t care about me, she only cared for my family….This was said in jest, but she knew where her priorities were. She was there for the hardest part; the waiting.
    I have some advice (I am no expert)
    Trust your doctors
    Trust the Anthesialogist
    Trust your gut, it will tell you what is right
    Be Positive…Be Positive.. Be Positive
    Trust your family..and friends…Let them in; you will feel better and they will feel better. They show their concern in different ways.
    Rely on the nursing staff. Today they spend so much time doing paperwork, that some actual caregiving is a blessing.
    Don’t expect much patient activity the next day. Morphine is a funny drug. My wife says I was never more entertaining.
    Don’t allow yourself(the patient)or your spouse to lose their dignity. This is very difficult, with all the tubes and bags and such. As quickly as possible get some decent clothes on. Cover the drain bags. Comb their hair. I know I felt more human in this inhuman environment, when I felt as though I looked somewhat normal.
    And last. For the caregiver, realise that some very good things can come out of this. You both will learn what is really important in life. The love you have for each other will grow tenfold if you both open up to each other and really talk. Those material things and petty differences you had before surgery are no longer important at all. And for you, the patient, realize that this is a team effort. It is not all about you. It is all about you both. Talk about it, cry about it and express you fears. Those fears will fall away when you both realize they are very similar, and when you express them, they can be minimised to nothing.
    I know this is a rambling bunch of thoughts. But I remember always having a crushing number of unattached thoughts roiling through my head during this time.
    By the way, even with this open communication, my wife had a meltdown (just a quickie) about 3 months after the surgery as the reality of what we had been through had finally sunk in. She is the best! 30 years of marriage and it gets better every day.
    I hope this helps somewhat. It will give you smething to read. My prayers and thoughts are with you. You have come to the right place for support. The people on this site know what they are talking about(unlike me)and they care deeply(like me)about you and your husband.
    I wish you the absolute best.


    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]

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