16 Days Post op rc

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

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

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.

Hi Stephanie,

Just wondering how your husband's consulation went on Tuesday? Any surprises? Or questions? Keep us posted.


Tim and Kathy

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

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

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

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

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

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.