CancerCompass message board discussion started by Penguin on 11/17/2005 http://www.cancercompass.com/message-board/message/all,3517,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had my RC done on 11/1/05, surgery was three hours. In the hospital for six days. Feeling good now up and about 80% of the day. Still need to take long naps. Waiting for my catherer to be removed on 11/28/05. If anyone has any questions about a RC feel free to email me. Tim Penguin Thu, 17 Nov 2005 00:00:00 GMT Sorry, this is all kind of new to me. What does RC stand for? My husband has bladder cancer & will be having his bladder removed in January. He has one more chemo treatment next Monday then we go for the surgery consult on Dec. 13. I am interested in knowing how recovery is from bladder removal. He hopes to get a neobladder. Thanks in advance, Stephanie Steph2005 Mon, 21 Nov 2005 00:00:00 GMT Hi Stephanie, A RC is a radical cystectomy is the removal of the bladder, lymph nodes and possibly the prostate or parts of the prostate. I did get a neobladder. It's been 3 weeks, I'm waiting to get my catherer out on the 28th and will enter the second stage of recovery. That is learning how to use my new bladder. I can't tell you how very important it is to have a surgeon that does hundreds of these operations a year. If your surgeon does less than 50 of these year I would highly recommend you find a surgeon with more experience. My fast recovery is completely contributed to the experience of Dr. Joseph Smith, Chairman of Urology at Vanderbilt Medical Center, in Nashville, TN. He was a pioneer in this operation. My surgery only took 3 hours and I was in the hospital for 6 days and feeling relatively normal in 12 days. Getting up and moving and walking the day after the surgery is very important even though your husband won't want to do it. Waking up the bowels is the key to getting out of the hospital and feeling normal. This is a very tough surgery, I'm 48 and was in ok physical shape prior. I don't know how old your husband is or what kind of physical condition he is in. I had bladder cancer for 12 years, the last 8 I was cancer free until this nasty tumor showed up. So it was time for it to go. Any other questions please ask as I'm more than willing to help any way I can. If his operation isn't until January he may want to start walking before the surgery. Remember walking is the key. Tim Penguin Mon, 21 Nov 2005 00:00:00 GMT Thanks for the fast response. My husband is 28 years old. Hopefully he will have a fast recovery like you. We live in Louisville, KY but the doctors here do not have much experience with the neobladder. We are traveling to Indiana University Medical Center for the surgery to be conducted by Dr. Koch, the cheif of Urology. He told us he has been doing this surgery for 15 years...the doctors in Louisville were not even familiar with it! My husbands tumor was 8 cm and had already moved into the muscle wall. He is just finishing his 4th round of chemotherapy. Dr. Koch thinks my husband will be a good candidate for the neobladder but stated it is "an operating room decision." They will also be removing his prostate as a precaution. Dr. Koch is going to preform a "nerve sparing" operation in hopes that my husband will still have sexual function with some help of drugs (Viagria maybe?) but we assume that will also be something that is determined once they open him up. After the second round of chemo was completed, my husband had a CT scan and was told that the tumor was shrinking. He will have another CT scan on Dec. 8 to see the latest results. My husband is in good physical shape, aside from the cancer. The chemo is taking a toll on him; he is tired constantly. The doctors want him to have December free of chemo or any other treatment to allow him to regain his strength & white blood cells before surgery. I am glad to hear that you are having a positive experience. My husband and I feel that the neobladder will allow him to have the most normal quality of life, post op. Of course, if he must have an external bag, we would accept that as well. Saving his life is the most important factor. We have an 8 month old little boy that needs his Dad! Thanks again for sharing your story. I hope your recovery continues to go well. Also, we were going to go to either Vandy Medical Center or IU medical Center for a second opinion. We ended up at IU only because we were able to get an appointment there faster than at Vandy. Thanks again, Steph Steph2005 Mon, 21 Nov 2005 00:00:00 GMT Steph, With your husband being so young he should be able go through this with good results. I have heard good things about Dr. Koch. With me also it was an operating room decision on the neo bladder, I was able to get the neo bladder and have the nerve sparing (worked) not a good thing with the catherer in. Big relief to know everything still works. He will look a bit like Frankenstein when he comes out of surgery, he will iv's and a couple of drainage tubes so don't let that alarm you. He will also have a morphine pump for the pain. It is a button he can push when he needs it. The faster he can get rid of the pump the better but tell him not to go through any unneccesary pain. I was able to get rid of my pump in about 3 days. The bowels won't wake up as long as there is morphine in your system. At this stage 20 days post op Tyleno is all I need to manage the pain. The first few days are the worst after that it gets better. Tell him to do every single thing the doctors and nurses ask him to do and to push it just a little. I found walking the first few times was very painful and tiring but after the walk I would lie down, sleep for a while and when I woke up I felt better. Not a lot better but better and got better with every walk. My heart goes out to him for what he is about to go through but remember you don't need an organ in you that is full of cancer. Even after 8 years it can still come back but not now. I am for the first time in 12 years cancer free. Tim Penguin Mon, 21 Nov 2005 00:00:00 GMT Hi Tim, I have a couple more questions if you don't mind. I know you said you were having your catheter removed soon. If this is too personal and you don't wish to share, I understand. Do you have a catheter that is inserted through the penis? The reason I am asking is because when we originally spoke to Dr Koch, he explained several options that we may be able to persue, depending on how much the tumor shrinks. One would be to rebuild the bladder with tissue from the intestenal wall(neo bladder I assume??)and urine would be excreted through the penis. The next best option was what they referred to as an Indiana pouch. That is just like the external bag, but it is on the inside. Urine would need to be excreted using a small straw-like tube about every 3 or 4 hours. The final option is the external bag. I know Dr Koch will answer all of our questions when we go back to Indy in December, but if you could share your experience with me (or correct me if I am wrong) I would appreciate it. Thanks for your help. Stephanie Steph2005 Tue, 22 Nov 2005 00:00:00 GMT Hi Steph, I do have a catherer with my neo bladder which was made from my intestine. The catherer stays in for 2-3 weeks after surgery (it is through my penis) so that the new bladder will heal. After it is removed I will urinate just like I use to. I will have to work on controlling it and they say that can take some time. My doctor also told me prior to surgery that there were three options, the first the neo bladder, second a pouch and third an external bag. It is really look and see when they start the surgery to see what will really work the best. Any other questions feel free to ask. Tim Penguin Wed, 23 Nov 2005 00:00:00 GMT Hi Steph, The neo Bladder as you know is made out of 24 inches of your small intestine. the problem with using the intestine as a bladder is that the intestine produces a "mucus" and it can clog you up if you don't drink enough fluids they leave the catherer in for 3-4 weeks for two reasons one to allow time to heal and also to allow you to irrigate the mucus that the neo bladder will produce. Three or four times a day, sometimes more you will fill a large syrgine like device with sodium chloride irrigation solution to flush the catherer. You put the solution in and draw it back out until the solution is clear (no mucus in the syrgine). After about a year the neo bladder will stop producing this mucus. It looks just like egg drop soup, something we will never eat again. Tim Penguin Wed, 23 Nov 2005 00:00:00 GMT Hi Tim, Thanks for the info. Thankfully, I do not like egg drop soup! Have a great Thanksgiving. Stephanie Steph2005 Wed, 23 Nov 2005 00:00:00 GMT Steph, You are welcome. Have a nice Thanksgiving also. Tim and Kathy Penguin Wed, 23 Nov 2005 00:00:00 GMT Hi Tim and Kathy, I was wondering how the removal of the catheter went? Well I hope. Yesterday (Monday, the 28th)was my husband's (Shawn) last chemo treatment! Yeah! I was curious if you had received chemo or radiation before your surgery. Shawn received 4 rounds of cisplatin & gemsar (I'm sure I butchered the spelling of those drugs) to hopefully shrink the tumor and make the surgery a little cleaner, as Dr. Koch put it. He felt if the chemo could shrink the tumor somewhat, it would be easier to spare the nerves. He may need additional chemo after the surgery but we will have to wait and see. Having the chemo behind us, even if it is just for now, seems like a huge accomplishment and we are both looking forward to the next step. I hope all is well with you both. Stephanie Steph2005 Tue, 29 Nov 2005 00:00:00 GMT Hi Stephinie, It did come out yesterday, boy the nurse said take a deep breath and she just pulled it out kind of like ripping tape off. I did not have to much trouble with the daytime but last night was very long every hour I woke up wet and had to change. I worrie most about waking up my sweet wife and disturbing her sleep. I din not have any chemo before or will I after. and by the way the nerve sparing part worked great we tried it out yesterday so tell him not to worrie about that. Tim Penguin Tue, 29 Nov 2005 00:00:00 GMT I know that will be a big relief to Shawn. Thanks for sharing. Steph Steph2005 Tue, 29 Nov 2005 00:00:00 GMT thanks to you for giving out a lot of information on the RC...will be haveing it done on 12-15-05...Will the excerise of the pelvic muscles and abs help or will it hurt since they will be cutting the muscles anyway? Airbrushdave Tue, 29 Nov 2005 00:00:00 GMT It will help on two levels one is the stronger the muscles are prior the faster they will heal and getting used to doing them is a big advantage. Tim Penguin Tue, 29 Nov 2005 00:00:00 GMT I thought that excerise would help, I rode a bike for several years before the pain in the groin made it impossible to sit in the seat...but am walking and doing setups and leg raises now in prep. Your story of your experience was a great boost to my moral and I thank you for sharing it. I travel and don't get internet time often. Will be back on in Dec. just before my surgery. Good luck to you and thanks again. Dave. Airbrushdave Wed, 30 Nov 2005 00:00:00 GMT Where was your sugery done and did they do a neo-bladder and remove your prostate also? Deb Heart Thu, 01 Dec 2005 00:00:00 GMT Hi Deb, I had mine done at Vanderbilt medical center in Nashville Tennessee. They are one of the best for this surgery in the USA and Dr. Smith is one of the top 5 surgens for neobladders. I had the nerve sparing they left my prostate in but hollowed it out in this way they did not disturb the nerves (and it did work)they took about 30 lymph nodes out bladder out and took a 24 inch piece of intestine to build the neobladder. Tim Penguin Thu, 01 Dec 2005 00:00:00 GMT We had it done at the University of Chicago and the sugery took seven hours. We also went to a top surgeon and he took around ten lymph nodes and dads prostate. They did howver spare his nerves as well. He had prostate cancer and we never suspected that so removal was lucky for us. You are much younger than dad who is 66 yrs old. He did have post op complications and recovery has not been an easy one. He developed and abcess and blood clot. Now, almost two months post op he is FINALLY doing better. He had abnormal liver functions we believe due to a reaction to one of the antibiotics her received. This happened to him ten years ago and we though he had a liver disease. After going to Mayo they determined he had a rare but documented case of a drug allergy. He has returned to work for short spurts but still is weak and not himself. Im glad things are going so well for you! Deb Heart Thu, 01 Dec 2005 00:00:00 GMT Hi Deb, I am sorry to hear that your dad is still having trouble. It is a tough surgery to go though without any complications. Please tell him that he is in my thoughts and prayers.Does he walk? walking will help him a great deal. He may not feel up to it but he will see the difference it makes in less than a week a little at first try to get him up to at least 1 mile a day.They made me get out of bed the second day after surgery I was holding on to my IV pole for dear life at first made one lap around the ward and would drop back into bed sleep and when I woke up I felt better not alot better but better by the fourth day I was during laps and draging that IV pole. Now I walk a mile a day 2 1/2 mile trips on the treadmill my doctor says it has alot to do with my rapid recoverey. Tim Penguin Thu, 01 Dec 2005 00:00:00 GMT Hey Tim, I hope your recovery is continuing to go well. A few more questions if you don't mind... Do you work? Are you planning to go back to work soon? Shawn & I are curious as to how long we can expect him to be off of work. Also, what should I expect after the surgery as far as caring for Shawn's day to day needs? I also work part time and am planning to take a leave of absence, but have no idea how long I should plan to be off. Did you have a home health nurse to help you with the catheter? I am sure every hospital experience is different, but someone else had recommended that I should spend the night with Shawn while he is in the hospital to provide immediate help to Shawn (ice chips, etc.) Was this necessary in your situation? Since we will be traveling to Indy, I am planning on staying at a hotel connected to the hospital, unless we decide I should stay with him. What kind of restrictions did you have post-op? Mainly, I am curious about lifting, driving etc. I realize this is a major surgery and want to know what to expect. Shawn is having his CT scan on Thursday and our surgery consult is next Tuesday. I know Dr. Koch will answer all of our questions, but your experience is greatly appreciate. Thanks, Stephanie Steph2005 Mon, 05 Dec 2005 00:00:00 GMT Hi Stephine, My wife stayed with me the whole time they had a chair that pulled out into a bed I'm sure it was not very comfy. For the first few days he will need his Moraphine he will have a button that he can push when he needs it but they will not want him to feel any pain so my wife would push the button a few times a night while I was asleep so the pain would not wake me (advised by my doctor) also when he is on the "button" he won't remember much so you can be his recorder. It will be at least 6 weeks before he can lift more than 5-10 lbs The catheter stayed in from the time of the operation until it came out 4 weeks later normal is 3 weeks but my third week was Thanksgiving week so I had to keep it one extra.He will not be able to drive until the catheter comes out. I look at this as a two stage recovery. The first is getting over the operation and getting your strength back. The second is learning control and stretching the neo- bladder to the correct capacity ( I think this part is the worst)at first I had to "go" about every 1/2 hour now just one week later I can go 1 1/2 hours and void around 100-150 cc each time but they want you to build up to 400-500 cc he will wear Depends or something like it at bedtime and he should sleep on a water proof pad I put a towel over mine. Once the catheter comes out he can manage on his own so I would plan on taking a month off for you and 8 weeks for him. I will return to work as soon as I can go 2-3 hours between voidings I am a real estate agent so this is a good time of year for me to be off.If I missed anything let me know. tim Penguin Mon, 05 Dec 2005 00:00:00 GMT Once again, thanks for the info. My husband said he didn't think it would be necessary for me to stay in the hospital with him, but I can't imagine being anywhere else! Thanks for the scoop. Steph2005 Mon, 05 Dec 2005 00:00:00 GMT Hi Stephanie, Just wondering how your husband's consulation went on Tuesday? Any surprises? Or questions? Keep us posted. Tim and Kathy Penguin Fri, 16 Dec 2005 00:00:00 GMT Hey Tim & Kathy, Thanks for thinking of us. The consultation went well on Tuesday. Dr. Koch said the tumor responded well to the chemo & it is now half the size as it was when we started. He feels confident that Shawn will be able to receive the neo-bladder, unless there any any unforseen circumstances. He does think he will be able spare nerves on his left side, but not on the right. Also, the tumor is sitting on the base of the prostate, therefore they will remove that as well. Did they remove your entire prostate or just part of it? Surgery is scheduled for January 6. They offered to do it before Christmans, but we opted not to spend Christmas day in the hospital. Dr. Koch also wants to "fatten" Shawn up a little more before the surgery, as he thinks he will lose more weight. Did you lose a lot of weight? Dr. Koch explained the surgery and what to expect. A great deal of what he stated was very similar to what you experienced. He sounded confident that Shawn would come through the surgery and recovery well. How is your recovery going? I am curious as to how you are doing now. My husband is very anxious to get back to a normal life as soon as possible. One of the first questions he asked the doctor was how long he was going to be off of work. Please give me an update on your progress so I can share your recovery experiences with him. Thanks again for thinking of us and for all of your information. Steph Steph2005 Fri, 16 Dec 2005 00:00:00 GMT Hi Steph, Recovery is going great. Seven weeks post op and two days ago I actually forgot for the whole day that it even happened. It wasn't until I saw my scar in the mirror and was surprised how "normal" I'm starting to feel. I'm getting good control of daytime continence, night time is going to take sometime. Kathy is a controller for a pharmcutical distributor and lost her main warehouse guy so for the past few days I've been him no problems. Picking, packing orders and lifting heavy boxes. I get a little more tired than I use to but that is to be expected. I did lose about 25 pounds but I needed to lose 50 pounds so it was a good thing for me. They "hollowed out" my prostate, it is still there but small. My dr spared all of my nerves but my tumor was on the back side of my bladder. My tastes in food have changed. I use to like fried greasy stuff but now it grosses me out. I like chicken and fish go figure. It was a very postive outcome. My nickname has always been the Penguin because in 40 degree weather I was in shorts and short sleeve t-shirt but after the surgery for about 5 weeks I was cold all the time but they say that is from the anesthesia and is getting better with time. With Shawn only being 28 yrs old I'm sure he will recover very quickly. I can only actually remember one bad day from the whole thing and that was the second day after the surgery. The best advice I can give you guys is to learn how to laugh at it. Tell him not to be surprised if he gets bummed out some days. Have him talk to you about it. At 28 he may not be willing to share vulnerable emotions but it really helps to talk about it. Tell him if he wants to talk to a guy about it contact me. I do not think they will let me give personal info just as email or phone number but you can get it by going to my website www.timrayhomes.com. This will bring you guys closer together if you let it. Remember to hold each other and that tomorrow will come. Also if you have to get cancer this is the best one to get I think. Tim and Kathy Penguin Sat, 17 Dec 2005 00:00:00 GMT Hi Tim & Kathy, Thanks once again for the info. I can't begin to tell you how helpful all of your insight has been. It is great to know what to expect. I am so glad to hear that your recovery is going well. I know Shawn will be happy to hear that you are back to a relatively normal lifestyle and even forgot about all that you have been through. I appreciate your willingness to talk with Shawn. I always access the Internet at work because we don't have highspeed Internet at home...yet. We are getting it because I want us to be able to use it while he is recovering at home. That and we might be the ONLY people in the world that still have dial-up. I appreciate your advice about learning to laugh at the cancer. We both have a pretty good attitude and outlook on the situation. I try to encourage Shawn to tell me how he feels, if he is scared, etc. but he doesn't say too much about it. He will provide answers if I ask direct questions, but he doesn't offer any information unless I ask. He has not complained ONCE about any of this. All throughout chemo when he was so sick and tired, he never complained. I have told him numerous times that it is OK to be mad, sad, scared, pissed, nervous, whatever and that we will cry through this together if we have to. I am not sure if it is "man" thing and he doesn't want me to worry or what. Maybe he would feel more comfortable sharing with someone who has been through it. I have definitely had my fair share of bad days where I am mad or sad, but we both have the attitude that we will overcome this. We have the absolute best medicine in our little boy. He is 9 months old and he gives us a reason to laugh and get on the floor and play and focus on other than the cancer. I think this battle would be twice as hard without him. Thanks again for the information. I have shared your story with my parents and Shawn's parents and I can't stress enough how comforting it is to know that you have had such a positive experience. I will definitely continue to visit this board after Shawn's surgery to share his experience so hopefully someone else will benefit. I think the unknown is one of the scariest parts of this mess. I'm going to check out you website! Thanks & Happy Holidays. Stephanie Steph2005 Tue, 20 Dec 2005 00:00:00 GMT Hi Stephanie, You will find as shawn recovers and starts to be the one helping others that it gives this thing we have in common some purpose, its hard to say "why me" when you can be of help to someone. He will be the inspiration to the younger people that get this news. you have helped my recovery in so many ways words just can't explain. So a big thanks to the two of you.Both Kathy and I will be thinking of you guys on the 6th Tim Penguin Tue, 20 Dec 2005 00:00:00 GMT Hi Steph & Shawn, I had my first big check up yesterday and all looks very good I don't have to go back for six months. I asked Dr Smith about doctor Koch and he said you are in good hands with him. They worked together at Vanderbilt years ago.Don't let the thought of Jan. 6th get in the way of enjoying the new year. Tim & Kathy Penguin Sat, 31 Dec 2005 00:00:00 GMT Hi Tim and Kathy, I am glad to her that your check up went well. Today is my last day of work until who knows when. Friday is the big day, and I am so anxious & nervous I can't concentrate on anything. I can't wait until we have this next huge step under our belts. I am glad to hear that we will be in good hands with Dr. Koch; I really like him, he has a no nonsense approach. He also seems to think Shawn will come through this with flying colors. The surgery is scheduled for 1:00 PM on Friday. Please keep us in your thoughts. I hope he has an uneventful hospital stay and that we will be home in a week or so. We have to travel to Indy for the surgery, so I will be staying at the hospital then entire time. I'll post an update as soon as I get access to a computer. Once again, knowing that you have had such a great experience really inspires us. Hopefully, Shawn will have a fast recovery as well. Thanks for all of your advice and support. I am looking forward to contacting you soon to let you know that SHawn did great and we are on our way to putting this behind us! Happy New Year! Steph PS - Is there anything special I should take to the hospital that we may need? We will be about 2.5 hours away from home, so anything we don't have, we will either have to buy or do without. Thanks. Steph2005 Wed, 04 Jan 2006 00:00:00 GMT Hi Steph. His robe,slippers if he is into music bring his Ipod or walkman he will be walking by the second day and the halls are cold lot's of pictures of your son tell family members to stay away for the first couple of days as he will need his rest ( not easy) and lots and lots of patience. if you need to talk call us. --- Message edited by CancerCompass staff: for personal protection, phone numbers removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Let us know ASAP how he is doing!!!!! Tim & Kathy Penguin Wed, 04 Jan 2006 00:00:00 GMT Thanks for the fast response. He got a robe and slippers for Christmas so they are packed. Music is as well. I appreciate the tip about family, I imagined he would not be ready for company until probably after the weekend. My Dad has a laptop with wireless internet access, so I hope to get to give you an update ASAP. If not, I will get one of my parents or my sister to update you. Thanks so much. I appreciate your phone number. I have printed them and this web address out so I'll have all my important stuff easily available. I will be in touch soon. Thanks again. I can't WAIT to get this over with. The anxiety in my stomach is killing me. Thank God you had a positive outcome and experience...that is what I am focusing on. Take care, Steph Steph2005 Wed, 04 Jan 2006 00:00:00 GMT Hi Tim & Kathy, I have been so wanting to give you an update but haven't had the chance. We STILL do not have highspeed access at home & I ordered it on January 8! Anyway, I stopped by my work today so I thought I would drop you a line. Shawn was released from the hospital on Wednesday, January 11 about 1:00 PM. We had an uneventful return to Louisville and so far he is doing great. He is managing his pain well with the meds Dr. Koch prescribed and he is up and walking around a bit. We are irrigating the cathetar about every 4 hours and just as you stated, egg drop soup...gross. Tim, everything that you told us to expect has been right on the money. They had him up & in a chair the day after surgery and by that afternoon he was walking the halls. His biggest complaint post-op was that he was thirsty. When we saw him in recovery he DID NOT have the tube in this throat as we expected, Dr. Koch removed it before he came out of recovery, so that was good. By the time we were being discharged on Wednesday, Shawn said he was ready to go home, that he was tired of looking at the same four walls. Since we have been home, things have been fine. Much better than I ever anticipated. He takes several naps throughout the day and watches TV & movies and plays a gameboy that he got for Christmas. We have been playing lots of Yatzee & 500 rummy and reading. The other day he wanted to go with me to Home Depot, but we decided it was too early; it had only been a week. His appetite is good, he is eating everything I put in front of him. The day of surgery he weighed 161 & when we left he weighed 151. Not sure what he weighs today, but according to my Mom he looks skinny. We go back to see Dr. Koch on January 26 for 2 tests & if everything is OK, they will removed the cathedar & teach him how to use the new bladder. We are still waiting for the pathology report to determine if he will need additioanl chemo, so keep your fingers crossed a little longer for us! I hope your recovery is continuing to go well & I am so glad that Shawn's experience has been as good as yours. Hopefully that will continue to be true! Thanks to you both for "listening." Stephanie Steph2005 Mon, 16 Jan 2006 00:00:00 GMT Hi Steph, Wow what great news we were starting to worry when we did't hear from you. The only thing I did't tell you guys about was the thirsty thing. The only thing they would give me was a sponge on the end of a stick and I had to squeze out all the liquid before I could put it in my mouth it was 5 days before I could have something to drink this was the worst part of the whole thing hands down. The first thing they gave me was apple juice I never realy cared for apple juice before but now it is my drink of choice how funny is that!Tell Shawn to enjoy the time off it will fly by and in no time he will be back to the same old same old. I think I told you before that this is a 2 stage recovery stage one is with the cath stage2 without go to www.depends.com and print out coupons he will be doing the diaper dance soon pick up two or three baby crib pads I put the pad down and then a towell over that. I have good control at night now as long as I set the alarm for every three hours my neobladder is at or near the 500cc mark and I can go two hours durning the day go to your local medical supply store a pick up a thing that fits in the toilet to measure the amount of pee-pee once the cath is out it's good to see what your doing I keep a log book with the time and amount so I can see myself getting better some days are better than others but every week there is improvment. Kathy and I are so happy to hear this great news and I know the good reports will keep comming. Tim & Kathy Penguin Tue, 17 Jan 2006 00:00:00 GMT Hi Tim & Kathy, Things are just about back to normal for us. Shawn is doing well and talking about getting ready to go back to work. I think he is jumping the gun just yet, but he will probably be back in about 2 weeks. Today is exactly 4 weeks post-op. Dr. Koch still doesn't want him lifting more than 10lbs. and Shawn still gets very tired after any activity. He has good control of the new bladder, although it is rather time consuming for him to empty the bladder. Was/Is that true for you as well, Tim? He is setting an alarm throughout the night (every 3 hrs) and that seems to be working too. He is limiting what he drinks in the evenings also. Shawn is a restaurant manager so when he does go back to work, he will be on his feet a lot & moving around a bunch. I think he needs a couple more weeks to heal before he is ready for that. When we went back to Dr. Koch to have the cathetar removed, we got the results of the pathology report. Shawn is now CANCER FREE! NO MORE CHEMO! We were both so excited! We did however learn that Shawn's prostate had cancer. They had already removed it, so it wasn't an issue, but we were surprised to learn that. I am so glad Dr. Koch had taken it initally because I would have died if they said we were going to have to start over! How are things now for you, Tim? Are you 100% back to yourself? I can not believe how far Shawn has come in the past 4 weeks. I agree with you completely...it is all about having a good surgeon; that and a good attitude! I hope all is well with you both; looking forward to hearing how you are doing. Steph Steph2005 Fri, 03 Feb 2006 00:00:00 GMT Hi Steph, Tell that boy to listen to his doctor!!!!! at four weeks he might feel ten foot tall and bullet proof but he is not. have him look up what a hernia feels like, the recovery is worse that the RC also the neobladder is attatched to the abdomen wall and straining can cause it to pull away that's not a good thing.I set the alarm one time a night and I can go 2-2 1/2 hours durning the day. I walk on my treadmill 45 minutes a day a feel great. I did take some time to void at first but now it's back to normal although I sit 99% of the time I still can't get it 100% empty standing and most likley never will (a small price to pay) the hardest thing for us guys is to keep a steady pace once we start to feel better we want to go man go. Don't let him have a set back not with as well as he is doing. I talk to guys that are 6 months post op that have to get up four times a night and can only last one hour durning the day so let him know how off the charts he is doing.how much is he voiding at night? he dose not want to stretch the neobladder to fast one of the biggest problems I see is letting the neobladder get too big it leads to having to self cath no fun remember 400-500 cc's is all we want that bad boy to hold. Kathy and I are so happy for you two and kudos to his doc for taking the prostate. As the old saying goes time heals all wounds so let him know his time is not up yet almost but not yet. Tim & Kathy Penguin Fri, 03 Feb 2006 00:00:00 GMT Hi Tim, How is it going? Things are going well for us. I shared your words of wisdom with Shawn about the hernea and the neobladder being attached to the abdomen wall and the importance of him continuing to be careful. I appreciate all of the info. He is being careful, but I am having a hard time holding him back any longer. He did go back to work yesterday - it had been a little over 5 weeks. Dr. Koch approved that so I didn't really get to say much after the Doc approved it. He is only working 3 days a week and he is working short days, so I guess that is a compromise. I was remembering that you told me after your surgery, you noticed that you had a change in the types of food you craved. Shawn hasn't noticed too much of that, but he definitely has had some changes in his sleep patterns. Did that happen to you? We will go back to Dr. Koch next Thursday and ask him for advice, but thought maybe you could shed some light on the subject. He is waking in the middle of the night, sometime because of the alarm set, sometimes just because, and he can not get back to sleep. He is stalking around the house at 4:00 AM. It hasn't been too much of a problem because he wasn't working, but now that he is back to work, he really needs to get a good sleeping pattern. Any advice you have would be appreciated. Also, do you limit your intake of beverages after a certain time of day? He is not. Dr. Koch said just to continue to drink as always so he is. The problem is that he is setting the alarm for 2 or 3 times throughout the night, then he can't get back to sleep...it is a vicious cycle! I also noted that you set the alarm once a night...that sounds better than 3. Shawn is a VERY heavy sleeper and I usually hear the alarm before he does. We may have to go to separate bedrooms before long! I hope your recovery is still continuing to go well. I am so happy to have Shawn back - he was so sick with the chemo for what seemed like so long. The surgery recovery has been a walk in the park compared to the chemo. We are now back to enjoying the simple things in life! Hope all is well with you & Kathy. Steph Steph2005 Tue, 14 Feb 2006 00:00:00 GMT Remember when I said this is a two stage recovery and the surgery was the easy part? First thing is to stop drinking two hours before bed make sure he is getting at least 64 oz of liquid a day but not much more.It took me three months before I could go once a night. There are a couple of options here. 1 he can just pee his depends and go on sleeping as long as he does pee and doesn't stretch his neobladder.2 you can get what they call a Texas catheter it's a condom with a hose that goes to a bag any medical supply store will carry them or you can go on line.#3 is the way he is doing it I think it will have the best outcome in the long run.I never had a problem getting back to sleep nor does Kathy. It is a tough road for the first few months and I don't think anyone gets the sleep they need and that's something I was mad about that the doctors don't tell you.Dr.Koch will most likely give him a sleep aid. Until I stopped drinking two hours before bed I was up 2-3 time also. I hate seeing you go to separate beds but you wouldn't be the first. this is going to take some time and there is no way around it. Have him try a ear piece that is hooked up to the alarm this way you will not hear it and if its loud enough it will wake him.I think the best choice is to wet the bed if he can get over it. whats happening with me now is 9 out of 10 nights my body wakes me before the alarm also make sure you have night lites in the bathroom so the bright lights don't wake him.and one last comment he is doing great it takes 6 weeks before you can go back to work but it takes months before you start to feel normal. I hope this helps. Tim and Kathy Penguin Tue, 14 Feb 2006 00:00:00 GMT Hey Tim & Kathy, Thanks for the words of wisdom. I was half-joking about seperate beds; it really isn't THAT bad...yet! It is taken me back to the days of having a newborn in the house. I totally agree with you that this is what is best for the long-run. And I already know that it is getting better everyday. I know that as time goes on, it won't take him so long to go; it still takes him quite a bit of time to empty his bladder. It is very encouraging to hear that you are able to wake yourself up before the alarm. I think Shawn is going to cut back on drinking in the evening. He used to be a major coke drinker...probably 3 or 4 a day; now he can't tolerate it much & drinks mostly water & Ginger Ale. He says the caffenine makes him have to go too often. Does caffenine bother you? Well, thanks again for the response. I think Shawn is doing great and I'll just suck it up throughout the late night wake-ups! It is a small price to pay. Talk to you later, Stephanie Steph2005 Wed, 15 Feb 2006 00:00:00 GMT Glad to hear you were only kidding and yes it is a small price to pay. Caffenie does make you feel like you have to go more often I am lucky in that I never have been a big soda drinker unless it had rum mixed with it and I don't drink anymore because I am trying to lose weight. Today is a big day for me I just got off the trail and made it end to end for the first time 4.5 miles in one hour 12 minuets tell shawn to stop his caffenie intake after noon and see if that helps but I think the biggest help is going to be time, with me it just all of a sudden happeded. Keep up the good work Tim & Kathy Penguin Wed, 15 Feb 2006 00:00:00 GMT 4.5 miles in 1 hour 12 minutes...Congrats! That is quite an accomplishment! Congratulations. Funny that you mentioned Rum; ever since the surgery, Shawn hasn't had a taste for any alcohol at all. We are both social drinkers and he used to enjoy beer & bourbon, but says now it doesn't even sound good to him. He said that he hopes it comes back soon! He could stand to regain some of his "beer belly." Congrats on your big accomplishment. Steph Steph2005 Wed, 15 Feb 2006 00:00:00 GMT Thank you for the thank you. it's funny I was a buurbon man in my 20's Tim Penguin Wed, 15 Feb 2006 00:00:00 GMT Hi Tim & Kathy, We went back to Indy yesterday for a follow-up appointment. Today is 7 weeks since the surgery. Dr. Koch thinks that Shawn is doing great and is pleased with his recovery so far. As you probably read in my messages to Donald, Shawn has no problems during the day, no pad needed at all, but nights are still a struggle. Although, Shawn is emptying his bladder much faster than he was just a week or two ago, so the night time interruption is shorter and Shawn is not having trouble getting back to sleep. I am happy to report that we have NOT had to go to separate beds; he is hearing the alarm much faster and all around, everyone is getting more sleep! We will not see Dr. Koch again until August. He will have a CT scan then. Dr. Koch said not to be alarmed, just routine; I guess we may as well get used to that! Shawn has not had as much success with his nerve sparing as you did. Dr. Koch said not to freak out about it because sometimes it takes up to two years to regain the ability to get an erection. I think Shawn hearing Dr. Koch say 2 years freaked him out more than anything! Dr. Koch asked Shawn if he was getting anxious about it (he is) and if so he could prescribe something that may or may not help. He gave him some samples of Viagra & something else, can't remember the name, same kind of thing though. He also gave him a penile injection sample, although Shawn is a little leary about injecting himself. I bet before it is all said & done, he will try it. It is very encouraging to have a great Dr. like Dr. Koch. He is so thorough. He told Shawn that if this doesn't work, to let him know & we will try something else. And if that doesn't work, we will try yet again, something else. Maybe even just alter the amount of medicine. I think that by Dr. Koch telling Shawn that, he (shawn) can relax a little bit, knowing that this is not the end of the road. One thing I have been wondering about your recovery...I know that you are doing a lot of exercise, walking,watching your diet etc. Did your Dr. recommend that you do that because of the neobladder or is that just for your own, personal well being? Shawn does a lot of walking at work because he works in a restaurant & there is a lot of running around. We take our baby on walks around the neighborhood and play basketball with my nephews and such, but Shawn doesn't do any regular exercise. I remember you said you were trying to drop some weight, so maybe that is your reasoning. Shawn isn't loosing weight anymore, but he is so darn skinny, weighing in at a whopping 151 lbs. Dr. Koch said as long as he isn't losing, he is OK. I asked Koch if Shawn should be doing any regular exercise and he said he should "do what he feels like doing." Just curious as to if you feel the excercise is a necessary, life-long component to having a healthy neobladder. Any thoughts? I hope all is well with you both. Talk to you soon. Steph Steph2005 Fri, 24 Feb 2006 00:00:00 GMT Hi Steph, I do feel the exercising has been a big part of my recovery just walking won't do it he has to get that heart rate up and keep it there for at least 20 minuets I do 5 minuets of slow walking then 60 minuets of fast than 5 of slow it will take a while to build up to that. Circulation is the key to getting the body back after all an erection is nothing but blood being stored. Dr. Smith gave me 100mg of viagra 10 of them he said to take it at least once a week and with time it would help I only needed 3 although I was always able to get an erection it just would not last long at first. Dr. Smith told me he has so many ways of fixing that and one of them will work for sure so tell shawn not to worry if it does not come back they can make it!!! The biggest thing is not to worry about it you guys will be messing around and before you know it there it is. Kathy knows me so well and would do things to me that helped make it happen without her I don't know where I would be at this stage. it is a fun game to play trying to wake up the big guy and as long as he feels no preasure for it to happen it will.Try being a little creative and see what happens but have fun with it and don't expect to much at first. I think I would pop a lot of pills before I gave that shot a try I have heard that it does work and in fact sometimes too good (4 hour eections) bottom line is it is just like the control thing it will happen when it happens Just don't let that stop you from trying. Tim & Kathy Penguin Fri, 24 Feb 2006 00:00:00 GMT How's things going? please give us a update on Shawn, Tim & Kathy Penguin Wed, 22 Mar 2006 00:00:00 GMT Hi Tim & Kathy, I was just thinking about you guys yesterday! Things are going great for Shawn. He is back to his regular routine & work schedule. His daytime control is 100%, although it is still time consuming for him to empty his bladder (5-10 minutes - no big deal). Nighttime is still a challenge...most nights he wakes up wet IF we don't set the alarm. Still, not a big deal. I don't think it is bothering him too much because he is not really as strict about not drinking in the evening as he was. I think since we have been setting the alarm, he is used to waking up because most nights, he wakes up the alarm before it goes off. However, on the few occasions we have forgot to set the alarm, it happens to be the nights he doesn't wake up. Go figure! We have a plastic mattress pad under our regular mattress pad and he has this liner thingy that is quilted to absorb if it gets wet. Shawn is continuing to have difficulty in the sexual department. We are following your advise and trying different things and not making it a big deal. He has tried the viagra and it was not successful. Dr. Koch explained that it is not a "magic pill," that there has to be something there for it to work with. He is going to continue to try it because Dr. Koch said one day it will just come back! The penile injections work, though. Shawn said it is a pain in the ass but definitely worth it. Not the most convenient. Shawn still isn't doing any regular exercise. We go for walks and he plays basketball but that's about it. Hopefully once Spring sets in we will both be able to get out and exercise more. He doesn't seem that interested in it and Dr. Koch didn't emphasis the importance to Shawn, so me yapping at Shawn about it isn't really going anywhere. He is still pretty skinny too. Weighing in at a whopping 151. His appetite is great; he is eating me out of house & home. Unrelated to post-cancer business... Shawn got a promotion at work! We are both really excited. This has been something Shawn has worked for his entire career and I was so scared that he was going to miss his opportunity because he was sick. Not that his company would do that intentionally while he was sick, but someone left WHILE he was off and I was afraid they would replace him while Shawn was recovering. Thankfully, they waited until he was healthy & back. We also celebrated our little boy's first birthday with a huge party. It was probably way too much for a first birthday, especially since Patrick won't even remember, but I felt like we had A LOT to celebrate. How are things with you? Do you still struggle with nighttime? Dr. Koch said one day it will just figure itself out one day, maybe that already happened for you. Something else I have often wondered about you, do you/did you ever smoke? Shawn was a social smoker, smoking when he drank. His parents have smoked all of his life and still do. I never knew that smoking was related to bladder cancer until Shawn was diagnosed. I always thought lung cancer, never bladder. What a crappy way to find out. Anyway, just curious if smoking was a factor in your cancer. Hope all is well with you both. I am looking forward to hearing YOUR update! Stephanie Steph2005 Wed, 22 Mar 2006 00:00:00 GMT Hi Steph, I am happy to report that all is back to 100% for me it is like it never happened. yes I did smoke since I was 10 years old but my doctor said that had very little to do with it my bladder was defective from the factory and smoking only brought the cancer on sooner than latter. Happy birthday to Patrick and a big crongrats to Shawn on the promotion.It's been 6 or 7 weeks since I needed to wear anything or have anything on the bed my quess is that Shawns Sphincter muscles have not yet come back to full power and he will not have night time control until they do. He has to do the start stop thing to get those muscles back in shape.I glad to hear that the shot works hopefully that will come back soon. It was nice hearing from you Tim & Kathy Penguin Wed, 22 Mar 2006 00:00:00 GMT Hi Steph, Kathy and I were talking and got us wondering if the chemo has anything to do with Shawn's slow recovery in the sex department I didn't had chemo before my surgery I will ask Dr.Smith about that when I see him on the 31st of this month. Tim & Kathy Penguin Thu, 23 Mar 2006 00:00:00 GMT Hi Steph, I asked Dr.Smith if having chemo before your RC could delay the effects of the nerve sparring and his answer was yes it can. I got another clean report and all is well but Kathy got bit by something and was in Vandy for almost a week she is doing much better now and is back to work. Hpoe all is good for you guys Tim & Kathy Penguin Tue, 02 May 2006 00:00:00 GMT Hey Tim & Kathy, I am sorry to hear that Kathy was having trouble. I hope it isn't anything too serious. As for chemo & sex, Dr. Koch elaborated on that as well. He said it could take up to two years (freaked Shawn out) for things to work naturally. That is why he was eager to go ahead and try the injections & pills. They are working OK, sometimes better than others, but we are just taking it one day at a time. I have encouraged Shawn to call Dr. Koch if it too bothersome for him, but he is insistant on just waiting until his next appointment in August. Other than the sexual side affects, our life is pretty much back to normal. A couple of weeks ago, Shawn was at work, changing a light bulb & FELL OFF THE LADDER! I almost killed him! He couldn't understand why I thought he shouldn't be on a 10 foot ladder just 4 months after a major surgery where he lost 2 of his organs. Luckily, he only spranged his ankle, but I almost killed him. I used your line - something about how he may feel 10 foot tall & bullet proof. I think I got my point across & doubt he will be doing much of anything involving a ladder anytime soon. We are gearing up for the Kentucky Derby this weekend & are looking forward to a fun day at the track. Let me know if you have any tips! Glad to hear all is well with you & I hope Shawn gets the same report in August. Steph Steph2005 Tue, 02 May 2006 00:00:00 GMT Had my bladder removed in March 2006. It's been a really slow recovery. Still can't eat right I have become very sentative to the smell of foods. I'm just wondering different people out there are recovering and what there going throught Eccavernasr Fri, 02 Jun 2006 00:00:00 GMT Hi, My husband had his bladder removed in January of this year. He has a neobladder. He was in the hospital for 5 days and at home with a cathedar for 2 weeks. His recovery went very well; he went back to work part-time 5 weeks post-op. He regained daytime continence quickly, however he is still struggling at night. My husband's surgeon attributed Shawn's quick recovery to his age (28) and the fact that he had no other health issues than the cancer. Shawn received chemotherapy before his surgery causing him to lose about 30 pounds. He has a good appetite, but is not gaining much weight. He weighs a whopping 150 pounds. He has not complained that the smell of foods bother him, but some of his tastes have changed. Things he used to love he can do without now. I am sorry you are having a slow recovery. What do you mean by slow, what troubles are you having? Do you have a neobladder? Where did you have your surgery? Please don't forget that you are only 3 months post-op. I had to remind myself that this is a major surgery and everyone responds different. How old are you? I found this website to be very informative when my husband was diagnosed. There are a lot of nice people that can share there experiences with you. If you have any specific questions about my husbands recovery, I would be more than happy to answer them. Good luck! Stephanie Steph2005 Mon, 05 Jun 2006 00:00:00 GMT Hi Tim, How are things for you & Kathy? Shawn & I are doing great. He hasn't had any problems. His ankle healed fine after falling off the ladder and the sexual side effects seem to have worked themself out as well. We go back to see Dr. Koch in August for a CT scan & follow up. Shawn is still struggling with nighttime, but other than that our life is normal. We are going to Hilton Head next week. What is going on with you? Steph2005 Thu, 29 Jun 2006 00:00:00 GMT Hi Tim, How are things for you & Kathy? Shawn & I are doing great. He hasn't had any problems. His ankle healed fine after falling off the ladder and the sexual side effects seem to have worked themself out as well. We go back to see Dr. Koch in August for a CT scan & follow up. Shawn is still struggling with nighttime, but other than that our life is normal. We are going to Hilton Head next week. What is going on with you? Steph2005 Fri, 30 Jun 2006 00:00:00 GMT Hi Steph, Great to hear that all is working out for Shawn and you, the night time thing will come around soon I hope. I have gone back to normal don't even think of the surgery anymore. I don't know if I told you that I had a form of MD called polymyositis it has been in remission for the past 6 years but seems to have comme back for a visit. I had my first of what will be many nasty tests today I am very weak can only lift about 30 pounds and sore like I have worked out. it thinks that my muscles are damaged so it sends out an enziem that eats the tisue but thats life one log after another to jump over. I am sure I will be reporting good news shortly I just need to get the right meds going. Take care Tim & Kathy Penguin Fri, 30 Jun 2006 00:00:00 GMT my mother had rc surgury & formed neo bladder but after 10 days leakage in abdomin was not controlled & she had infection & again gone for re surgery to remove leakage . now after surgery on 7 th day againg unine is coming from abdominal drain. she was 55 years old & no foods given from 22 days . Mucas also coming from urine. Infection is minor. I do not know what is to be done further & how to come out from this situation as i cannot trust my surgeon after this problem. can you guide in this regards to give post op tips. Pankaj India. Pankaj Mon, 06 Nov 2006 00:00:00 GMT Hi Pankaj, I am sorry your mother is having a rough time of it,the mucous will be with her for the rest of her life the intestine that they used to form the neobladder produces the mucous so this is to be expected, but if she drinks plenty of water it should not be a problem.Please go to www.acor.org and click on the mailing list tab then click on the "B" and go to the bladder cancer cafe and sign up there you will find many women who have had RC's done. Has she started to eat yet? If I can help any further please contact me. Good luck Tim Penguin Mon, 06 Nov 2006 00:00:00 GMT Hi No she was not allowed to start the foods/liquid. Water is allowed less by dr. from last 2 days more urine & infection is coming from abdominal drain as may be suprafobic catheter get chock up due to mucus. what your doctor can suggest in this situation? what i really do to save her. money is also shortfall for me. rgs Pankaj Pankaj Fri, 10 Nov 2006 00:00:00 GMT Hi Tim, Remember me? I am wondering how you are doing? If I remember correctly, you just passed the 1 year anniversary of your surgery? I hope life is treating you & Kathy well and that the problems you were having with MD have subsided. Everything is going great with us. I remember when Shawn & I were going through this terrible ordeal, you mentioned that your life was back to normal & some days you didn't even think of the surgery. I thought you were crazy, but you were right. We have moved on & hardly think of it. Until we get the hospital bills, that is! Anyway, just wanted to let you know that I think of you often & hope you are doing well. Happy Thanksgiving. Stephanie Steph2005 Fri, 17 Nov 2006 00:00:00 GMT Of course I remember you!!!!!!!Your ears must have been burning, not more than an hour ago I was talking to Kathy on the phone and we were asking each other about you guys.what a trip!!! I am doing much better now I just had my one year check up and all is good I don't go back untill April. I am so glad you guys are doing well. Happy Thanksgiving to you and please keep in touch. Tim Penguin Fri, 17 Nov 2006 00:00:00 GMT