Home after Robotic

Good luck with your journey; hopefully it is a good one. Sure sounds like a good start!

For me, I did not do stairs until the cath was out; and then it caused my problems (blood in urine). Maybe I did to many. Take it slow, and have more patience than I did.

Welcome to the other side!

I think the report sounds good, about the same as my first couple of days. I also left the big bag on - just was too much hassle to swap them and be sure it was all done to the standards the nurses gave me. It won't be that long, I hope.

Stairs - yes, I have them too, so I did orderly pacing - may have worn out the carpet, but the first few days the stairs were too much.

We'll be watching for updates.

Welcome to the other side, the recovery side. So glad that it went as well as it did. Hope he continues to heal well.

Congratulations on having everything go well!

Dan

Oh Paella, it is so good to hear from you!  I am happy to hear Mac is recovering and doing pretty good.  See, this is what I don't understand... Mac and Ron had their biopsy(s) done at the same time.  However, his surgery will be another 6-8 weeks.  It just doesn't make sense, except that the doctor does have a two week vacation in July.  I pray the cancer does not spread.

May Mac continue to improve with each passing day.  Plese return whenever you can.  You do sound so knowledeable.  We can't wait to be on the other side.  My husband is not a happy camper with this postponement.

Peace,

Aimzee

Paella and Mac

Welcome to Part Two of PCa

Sounds like the pair of you are on top of things.

Not sure what folk think about you not changing the catheter bag. Do you mean you leave it connected all the time or do you still take it off to rinse it.

I was told how to clean all the bits/joints/connectors and clean hands etc before handling them. I also had to rinse day bag at the end of each day and rinse night bag each morning. After three days I had to throw away the bag. (The hopsitla sent me home with a box containing spare day and night bags, connectors, sterile gauze etc)

As for stairs. I was told walking up and down stairs was one of the best things I could do, at this stage all that matters is that you do it carefully/slowly.
I even walked up and down a flight of stairs at the hospital about 26 hours after surgery to see if I could, because when I got home later that day I knew I would have to walk up three flights of stairs to get to our appartment (48 steps in total). And then, once inside the front door, we also have another flight up to our bedroom. (We have a top-floor duplex in a building put up before regulations said such buildings had to have an elevator - but I was glad in a way that I could not use an elevator and had to walk)
The layout of the appartment(building) thus meant I did stairs even when I didn't go out to the street. (I refused the idea of being brought breakfast-in-bed. I also did a lot of pacing around and made sure I went to the kitchen to make my own drinks etc and was not having them brought to me.
With every trip to the street involving 48 steps down and 48 up again I also had to bear that in mind when I ventured further in the following days. (This "48/96" problem has reappeared as an issue a year on now that my RT has started to make me very tired.)

A difference in the scheduling of surgery may seem like it's not right, but PCa isn't like other cancers when it comes to the speed it grows at. I think this is not a problem medically speaking, but if someone is anxious about surgery then it does of course give them longer to be anxious. And it might be better this way round than what could have happened to me. We had our plans all sorted out, and then the hospital rang to offer me surgery three weeks earlier than arranged as someone was ill. This wouild also have meant surgery the next day. That was a no brainer. If nothing else we wanted the three more weeks of sex that we had been anticipating.

Don't worry about the mechanical stuff. I think PCa folk are all thiniking about sex in one way or another. I was wondering, do guys with PCa often hear a strange buzzing noise when they are nodding off or when they wake up in the night? On no, it's not what I thought it's the fan on the computer as the wife is posting at HW in the middle of the night!!!

Alfred

English Alf – Cute (last paragraph!).

Can’t imagine how you and your wife must have felt when you saw your post-op PSA going up. Everything about your pre-surgery stats pointed to all being well (gleason 3+3, no family history, negative DRE) and your recovery from surgery went so well. You are finished with your RT and now must wait how long to learn the results? How we wish you hadn’t needed the RT, and oh, how I don’t want us to have to become knowledgeable about next steps.

One of the things that has me worried is that the Urologist who did the biopsy was quite confident that everything would come back fine. “While your volume is a bit high for your age, the ultrasound looked good, your stats aren’t out-of-line, no family history…so I’d be surprised if anything is amiss”. Even more positive was the surgeon this week who said that there was “nothing unexpected seen in the surgery and that the mini-pathology done on-site showed no signs of cancer”. I try to NOT think anything but good news, however I keep seeing us sitting across from the surgeon next week in that surreal, dumbfounded and totally disbelieving state. It seems sacrilegious for me to even put this thought into words. To tell the truth, being able to verbalize this kind of thing on this forum is therapeutic. OK – enuf of that…only positive energy from now ‘til next appointment.

As for the cath bag – the nurse suggested leaving the large bag on and Mac just carries it with him on his walks. (For longer walks in public, she suggested putting the bag in a tote bag.) We clean the hose with an antiseptic wipe and wash the part that goes into his penis with soap and water. She said the outside of the bag could get washed with soap and water in the shower and that if we weren’t connecting and disconnecting the bag, it didn’t need to get rinsed out. Does that sound reasonable?

Best - Paella

Paella said...
Aimzee - didn't you two see your surgeon yesterday? How did that go? What is the hospital? From everything I've learned from what people say on this forum, I don't think you should be too concerned about the delayed date for the surgery. The worst part of the delay is more time to wait and wonder and worry. But maybe you guys can make the best of what feels like a bad situation by using this time to draw close, spend time with family, and talk your asses off! Talking about mortality is not a bad thing, by the way. Mac’s diagnosis on 5/3/10 started both of us off on spending more time in the “mortality” file of our mental computers. We talked about how very angry and tearful this cancer made us since it could rob us of a lot of years of experience and adventures but at the same time it got us thinking more about the wonderful positives of our life…family, the good impact he’s had on others, the amazing father he is. All of which made us cry more but in a good way.

Stay busy. On a practical note – get your husband to make a goal of getting as fit as possible over the next 6-8 weeks. If he’s overweight, he could safely loose 15 to 20 pounds in that time period. If you don’t already cook / eat healthfully make a goal of doing so (cookinglight.com is a great site for recipes with fewer calories/fat but which don’t taste like you’re being deprived.) If he’s into any pastime (golf or tennis or hiking or gardening) do lots of it together. (Mac and I both play golf badly but since I’ve been sidelined for months because of an elbow injury, I would just walk along with him. He didn’t really want to go by himself and one golfer costs less than two! The day before surgery we walked 9-holes and he pulled his clubs.) If your finances allow, perhaps you could take a 2 or 3 week road trip (you could car camp, stay with friends or become an Evergreener – B&B homestays for people over 50 (http://www.evergreenclub.com/). OK, now – this next part is a bit embarrassing to talk about but here goes: Having lots of erections and orgasms apparently helps keep the nerve bundles and the little veins and vessels robust which could be a good idea prior to surgery. 10 days before surgery that’s what our surgeon recommended (and of course being TOLD to have lots of erections immediately made it mentally harder to do…sex really is all in the mind, I guess.) Anyway, no matter what your “definition of IT is”, do lots of “IT’. Once a day or at least a few times a week which believe me WE weren’t used to doing after 39 years of marriage. Whether you do it together or he does it in the shower…I know, I know, that sounds pretty mechanical and weird but mechanical can do the trick – just ask any teenager or a woman who owns a vibrator.

I’ve rambled on long enough.

Our best to you and your husband. Keep your chins up and stay positive.

Paella

Thank you for taking the time to post this hopeful message.  I have taken this post and put it in a file for me to read.  I did post this info elsewhere:

 

Just a quick post for tonight (Tuesday).  My husband had the meeting with the surgeon who will perform his da Vinci Prostatectomy.  I had my list of questions and the doctor was very polite about answering them.  Ron found out all he needs to know about his robotic surgery, and he's not happy.  We meet with the doctor again in 4 weeks, and the surgery will be in 6-8 weeks.  

Now we found out April 27th that he had  prostate cancer, and it may be August until he has his surgery.  That will be about 15-16 weeks. Doesn't that seem like a long time to wait?

Feeling a bit discouraged over here.  I do appreciate all the information I have read.

Your advice was helpful, Paella.  We went to two baseball games, a professional baseball game, participated in a Garage Sale, and went to a Graduation Party.  At the party, our 3 year-old Grandson was following him all over the place.  He was making funny faces and wanted to be held.  I know some here may not see this as a real problem, but it might be.  We see our Grandbabes a lot.

I told Ron about your advice and he liked it!!   He is actually 5 pounds underweight.  He doesn't seem to have much luck doing those Kegels, though.  We do plan on taking a three day vacation, plus we have a wedding coming up.  We have also thought about going to a concert before the surgery.  We have allowed some time to relax, too.

We are doing our best to not stress out.  We have also prayed together.  Thank you, again!

Aimzee

Paella,

Great to have you and Mac safely on the other side! Come Tuesday we'll all be watching for news of a great pathology report.

I can give you all sorts of recovery advice ---- none of which you need. It sounds like you're doing wonderfully well. Bravo to you both.

The loud noise you hear from up north is just me up here in Canada cheering you on!

Sheldon AKA Sleepless

P.S. In your first post you included a great signature. You can add this in your profile as a signature and then it will always be there for the rest of us. Thanks! Just cut and paste:Mac’s statistics:
Age 65 - 5'11" Weight 210 BMI 29.1
Overall Heath Condition: Good
PSA: November 2001 = 1.0 slowly rising to 4.4 in Feb 2010
Biopsy: 04/19/10: Gleason 3 + 4 with 5 of 12 positive (2 at 15%, 1 at 5%,
1 at 25 and 1 at 35). Both lobes involved (right lobe with 1 positive at 5%).
Left Lateral and Left Apex involved with 15% and 35%.
No base involvement
Robotic Radical Prostatectomy on 6/14/10 with both nerves spared
Path report due on 6/22/10

thanks, E-Alf!

No kegels while cath is in place, fer sure.  Still so far so good with that tube...trust it'll be out tomorrow with a cystogram taking place first just to be sure.  Does the cystogram hurt?  Does it hurt to have the cath removed?

Hope you had a nice father's day - an enjoyable holiday in the U.S.

Paella

 

 

Mac’s stats:

Age 65 - 5'11"

Weight 208 BMI 29.1

Overall Health Condition: Good to excellent. 

PSA: 1.0 in November 2001…slowly but consistently rising to 4.4 in Feb 2010
16-needle Biopsy 4/19/10: Gleason 3 + 4 with 6 positive cores; 1@ 35%   1@ 25%   2@ 15%   1@ 5%   1@<5%
Both lobes involved (right lobe with 1@5% and 1@<5%)
Left Lateral & Left Apex involvement
No Base involvement

Surgery (RALP) on 6/14/10 at City of Hope – margins “appeared” clean (backed up by mini-biopsy)

Path report due 6/22/10

My cystogram did not hurt, that's all I know. It was 7 days after surgeyr and it went like this:
I lay down on the tabel to the x-ray machine and via the arm of the Y of the catheter that is not connected to the urine bag some special liquid was fed into my bladder. This is a harmless solution that is visible to the x-ray type camera.
The other arm of the catheter is obviously clamped shut at this point to stop this liquid simply pouring straight out again.
The bottle of liquid was hung up about 4feet above me (like a saline drip) and gravity was enough to overcopme the pressure of my bladder. It was about 150ml and took about two minutes to get it all inside me. There was no real sensation other than a slight cooling as the liquid was obviously at room temperature. The nurses kept talking to me and asking if it all felt okay, and a couple of times they came over to adjust the tubes and/or my penis to make sure there was no kink in the tubes and that the liquid was flowing okay. Then when they began to take the pictures they taped the tube out of the way.
The "camera" whirred etc and moved around me doing its business and there was a monitor above my head where I could see the dark shadow of my full baldder. (the same image that the staff were looking at, and the staff kept talking to me from behind the safety screen to check I was okay and tell me how long there was to go etc.
The expert saw enough within that time to call out that all was okay and that I would be able to go up to urology to have the catheter removed.
They disconnected the bottle and removed the clamp so that the contents of my bladder began to fill the bag once more.
It was all so simple that I really have no idea how long it all took, but I can't have been lying down for more than 10 minutes max including all the prep time.
I then went to see the uro with my wife. The first thing he did was give me the details of the post op pathology. After discussing what that all meant he said it was time to remove the catheter.
I dropped my pants and half sat on the egde of the examantion couch, before I could finish getting comfortable he ahd deflated the balloon and slipped the darned thing out. this was perhaps not more than 15 minutes after the cystomgram and I think the liquid may have helped lubricate things and also numb things by being cool.
It hurt more when he pulled off the sticky tape on my thigh!
He handed me a pad to put in my underpants (A nice snug fitting pair, not boxers - take note!!) and said I must wait around outside till I could pee and then I could go home.
I then had a very strange senation that pee was simply dripping out of me without me having any means to control it and I nipped across to the WC and for the first time in a week did a very small pee. I then sat with my wife for about ten minutes doing a bit of Kegeling to try and remind the muscles down below what they were for. I then had another small pee and that felt much more like normal. the uro saw me as I caem out of the WC and in a joking way asked what i was still doing there and that I should go home.
My wife wne to the cafe and had a coffee, but I had nothing to drink. then after about another 30 minutes I had another tiny pee and we went home on the train. (Another pee on the train)
I then had plenty to drink once I was home.
The pad had got damp in the two hours since the catheter had come out, but did not need changing till I went to bed as I simply went to the WC every 45 minutes.
In the morning my nighttime pad was hardly damp at all and it seemed that it was just as likely to be damp from sweat as pee. (It was August and a warm night)

So all I can hope is that you have a simple day tomorrow.

I'm not a big one for celebrating Father's Day. In fact we don't celebrate it. My dad died when I was 27 and he and I were never aware of Father's Day even existing. But in the context of this what he always said about Mother's Day was that it was also a bit of a pointless thing as one's mother was special every day of the year and not just once a year.

So be nice to your parents 24/7. And - in no particular order- be nice to your kids, grandparents, partner, friends, relatives, neighbours, colleagues and strangers 24/7 too. Oh and even be nice to your uro too!!!!

Alfred

At my final appointment before surgery I saw someone from the uro's office and an aneasthetist. I was told about things like the need to stop taking any medication I might have been on and not to use aspirin type pain killers in the days before. I also went for a blood test to get my blood group confirmed. they also listened to my heart etc, and some guys get an ECG. You will probably get told about what you have to do in the last 24 hours or so before surgery regarding eating, drinking laxatives etc, and may get a bit more details about the timings on the day, when to turn up where to go etc.

I had surgery on the 29th July 2009. It was a nice summery day: my wife went for a long walk around the parks and canals near the hospital and sat to read a book. So another thing you might want to ask about is what can you as the partenr do, ie when do you have do leave the surgical team to get on with it and when can you come back. (make sure they can contact you by phone perhaps)

And your popst was timed at 4am so I hope you're not losing sleep, or are you, like me in a different time zone?

Alfred