RPLND - Going home at night...

[mercyriver]

I have a question for all you care givers, who's loved one has had an RPLND, did you go home at night? How much time did you spend at the hospital?

I am trying to get myself and my girls (9,5 and 3) ready. I know I don't HAVE to spend any time at the hospital if I don't want, but I think my husband would think I hated him if I did that!

Honestly though, I need to work out care for my girls and just have a general idea of how much time I will be at the hospital, assume we are doing this here in town. If we have to go out of state, that would be a compleatly different issue!

I have no details yet, we will be talking to the urolgist this week. I am just trying to get things in order now.

Thanks!

Becki

[dadmo]

The most important time for you will be the first 2-3 days. Your husband will need someone to swab his mouth and give him ice chips. He will also need naggind to get him to walk, walk, walk, it's critical to the successful recovery. There is really no reason to sleep at the hospital but many do. My wife and I came home every night but at the hours we were travelling it only took a 1/2 hour to get to Slaon. After the third day he should be good with some extended visiting hours, I'm sure he s that you have the children to take care of.
This is what our schedule was like. The day of the operation we were there at 6am and didn't get home until around 1 the next morning. We were back at the hospital by 6:30 and didn't leave until Jason fell asleep at around 10. We did this for the first 5 days. On day 6 we went to the hospital at around noon and the again stayed until 9-10 at night. We did that for the last 5 days.

[Margaret]

Boyce was in the hospital for a week and the first 2-4 days were important. In fact, I was going to fly home on day 3 and see our 7 year old son for a night and fly back and Boyce asked me not to go...to stay with him. Which is not like him at all and I knew then that he really needed me there. I would say to prep your girls that Dad will need you for about 5 days. I would go home some nights and some nights I slept in the hospital....Thanks for keeping me company Michael....it was a busy place, even at night we would gte him up out of bed.

[Russell's Mom]

I spent the first night with Russell, I think he was glad that I did, but would have done ok if I didn't. I was glad to be there when he woke up. After that I stayed late, but slept at the hotel. I think that it helped him realize he would was ok. We did spend a lot of time together and the walking is very important as Dadmo has mentioned. Russell lost a lot of blood during the surgery so had added weakness. 1/3rd of his total volume to be exact. He had 3 lesions on the vena cava. I think the weakness added to the discomfort. Always trying to keep the balance...he also informed me that he went snowboarding 3 weeks post op!! Didn't tell me until after the surgery. When my mouth dropped, he said..."well, I didn't do any of the jumps!!" My suggestion, be ready to step either way. He will also enjoy your energy if you are not exhausted and stressed out!! Take care, Sharon

[dannysbrother]

Margaret,

I felt like after that, I had the fantasy slumber party I'd always dreamed of! And with a southern belle no less!!! Oh how I remember that time. Boyce was amazing. He walked and walked and every time he came around the bend past Danny's room, I said to Danny, 'that's what you want. that's what were going to get to.' I still say the same thing.

Becki, I guess it depends on the person and the moment. My brother can't stand to be at the hospital by himself... which is funny because at home, all he wants is 'space.' He's always been that way. It's a teenager thing. BUT whenever we step foot in the hospital it couldn't be more opposite. He's very uncomfortable if someone doesn't stay with him.

Sloan is great for RPLND. I know everyone's all bonkers for Shienfeld, but I can tell you that the more pressing and important deciding factors are the the juice machines and lovely lounge on the 5th floor. Just keep in mind the bastards turn off the juice machine at 9pm, so stock up. (Although, they do keep emergency juice cartons in the back of the fridge for diabetics.) I hope the diabetics kept their glucose in check when we were there...

Mikey

[Margaret]

Boy did you make me laugh just now! Let's see...I have this picture in my mind of myself during that week...No make-up , crying jags all the time, no sleep in days, wearing my "someone I love has cancer" t-shirt, and I think by day 4 I was starting to smell ....not exactly the fantasy I bet you had in mind.

But heck, get Danny better and we will all meet in Vegas and I just may do a table dance for you. Grease up that pole Karen !

love you guys!

[MRMRSU]

I was wondering when talk of the pole was going to surface again!!!

Okay Becki...here's how our RPLND played out:
Check in at 5:30AM for a 7:00AM surgery. Andy's was almost 6 hours long...the range they give is usually 4-6 hours. He was in recovery for about 1 1/2 hours after that before they brought him into his room. We were in the hospital for about 4 days. NO FOOD TOO SOON! That's what will keep you from having to go back to the hospital like we did for another 7 more days of restless nights. I slept in the hospital room with Andy every night he was there...I wanted to be right at his side (thank goodness it was a private room!).

[drom]

Like Dadmo we were at the hospital the day of the operation from 6am until about 11pm, I went home with my younger son who was also there to give big brother his support. Kim spent the night and Alex was glad she did. For the next six days we would get to the hospital around 8 and stay until about 10 at night.

Kim took the time off from work, I work in the city so I would travel the 6 train all day long back and forth, I would put a in few hours at the office but spent most of my time at the hospital.

Again like Dadmo said, walk, walk, walk. If you are at Sloan 14 times around the floor equals one mile. Each day he got stronger. Don't be frightened by the way he looks after the surgery, all the tubes sticking out of him. I was stunned when Alex was up and walking quickly after surgery.

Domenic

[mstlyn]

I stayed in the hospital hotel part of the time, and went home once. Then Anthony started having problems after drinking too soon.

I ended up sleeping on the floor next to his bed the last few days he was in the hospital. He was there for 9 days total, but probably would have been less if not for the ileus.
I went for those last few days with no shower too, Margaret, so I know where you're coming from.

I felt like a stinkin greaseball, looked like one too.

I was lucky that my kids are mostly grown, so I didnt have to worry about finding someone to take care of little ones. You just have to do whatever you have to do, to get this taken care of. What's important is that your loved one gets the needed treatment.

Prayers,
Tammy

[David1969]

I know where you're coming from, Dave and I had a 3 year old and an 18 month old at the time of his RPLND last year, we're from the UK and here with Dave's work so have no family but have a lot of UK friends through his work. I felt really bad on the day of his op because I stayed as long as I could and went back when he was in recovery, he didn't go to his room until 11pm and I was torn between getting home for the sitter and staying with him. The whole time he was in hospital I would just be able to snatch a couple of hours with him, 1. because I didn't want to upset the kids too much and 2. I didn't want to wear the kids welcome out with their friends.

Unfortunately Dave's now got to have a repeat RPLND and as it's a repeat we are going to have to go out of state but not far just New York and this time round we're flying my Mum over to watch the kids so I can spend as much time with Dave as he needs.

My advice, after my waffle is that if you have family to help out then use them, but if you don't, do the best you can and accept that, don't beat yourself up, just use the time that you are there, nag him into walking, pamper him. I tried to go a couple of short times a day rather than a long period as we just annoyed each other, it worked out better for getting him to walk around and taking things in as well. I also phoned him when I could or phoned the floor to see how he was, it made me feel a bit more proactive. You're going to be the most use to him when he's at home recupperating so don't wear yourself down early on.

[mercyriver]

I have to say, WOW. First because you guys are all so ammusing and secondly for opening my eyes to the reality of hospital time. I didn't even know you could stay at the hospital that long.

We met with the urologist today. He didn't have the PET/CT, didn't know we needed to bring it. So he wasn't certain how far up the lymph nodes that needed to be removed were. So he couldn't tell us yet if my husband was going to have a open RPLND or a modified template. We should know later this week after he reviews the PET/CT.

I looked at the PET/CT from April and it stated the lymph nodes were at L3-4 and L2. So who knows yet!

He did mention with the modified template the hospital stay would be 4-5 days but with the open RPLND the hospital stay would be 10-14 days.

He went over all the possible side effects and the most common ones.

After he reviews the PET/CT he will contact us again and surgery is planned for the start of November.

I spoke to my mother today about watching the girls. I still don't think she got the full feel for how much my husband is going to need me there after the RPLND. I wish there was a web site that detailed the RPLND and the after care.

So, I have a couple weeks to get things organized!

Thank you all so much for the wealth of information! You guys are great, but I am sure you all knew that already!

Becki

[MRMRSU]

Hey Becki: Try this website http://tcrc.acor.org/rplnd.html

[dadmo]

Becki:
I was just looking at the time line under your signature and I would think it's time to begin to move quickly. With the nodes still swollen after chemo and now the nodes are growing something needs to be done soon.

[Karen]

Becki,
You really do need to move on this quickly. He needs the RPLND, and the sooner the better. The site Maria pointed you to gives you a good overview.

[mercyriver]

Actually we just found out they are going to do an LRPLND.

I am devestated and my husband thinks it is great. I greatly fear for the outcome of all of this.

I told him how I feel about it and why and he just shrugged his shoulders and went off and did something else.

I am not quite sure where to go from here. Maybe I'll be able to talk some sense into him tonight.




Becki