Arn came home on Sept 13 – doing pretty good

[Arn’s bladder]

Hi everyone, Arn was in the hospital almost 2 weeks after having his bladder removed, and a Neobladder created in place of it. The first week was hard, mainly trying to get his back pain & surgery pain under control. But he was able to go for walks, eat bland/liquid food etc. Finally everything settled out, and he came home yesterday with 3 catheters. I help him with the flushing; it wasn’t as hard as I thought it would be! Once those are gone, the sky is the limit. He does get tired – it was major surgery. All the best to those facing surgery, tests, etc. You can do it !

xxoo

Arn & Kory

[SJay]

So glad to hear things are going well for you,

[shelties]

Hi there Kory and Arn, so glad for you that things are working out good and you seem to be on the home stretch to recovering. I know you still have things to get used to as you learn your new normal, but it sounds as though things are already starting to take shape. The surgery you had certainly was major and you won’t recover from that overnight, but in time once you recover, life will look a whole lot better for you. It must be a big relief to you both now that the surgery is over.
Take care and all the best to both of you.
Lorraine

[Arn’s bladder]

Hi Lorraine !

It is a big relief to have the surgery over and look towards the future. Arn’s taking part in his recovery. We’re both crabby at times – over-tired mainly, we apologize a lot to each other. Once the catheters are gone (maybe next Tuesday), he will be able to walk better and get around a little more. He does get tired though, can’t rush it ! Doesn’t want much to eat. Lorraine, he had a rough time during the operation. His heart stopped during surgery and they had to do CPR. 6 1/2 hours of surgery and 20 hours in recovery. Then when he was in his room, he was in excruciating pain for a week, back, stomach, and kidney. Then he upchucked a wastebasket size bunch of bile which didn’t help. The pain meds weren’t working as well as they thought they would. So, lots of different changes in pain meds. He’d about had it by then. Said he would never have had the surgery if he had known what that first week would be like. On to constipation, gas pains, it was awful. He was on IV fluids & IV food only, for a week. Lost 10-15 lbs. which he needed to lose. It was touch & go for awhile, but sort of turned the corner, and started getting better. Pain was under control. Now he’s home, but says he will never have surgery of any kind again ! He’s had several knee surgeries, knee replacement, back operation for crushed disk in base of spine. Just too much pain for too many years ! I didn’t put this on the web site because I didn’t want to scare anyone who had surgery coming up. Will just have to wait and see if his mental outlook changes. I think you would understand what he is going through, with your history of surgery! Thank you for asking, xxoo Kory

[Marie 1]

Kory, happy to hear that Arn is home. Home is where he feels comfortable and will help with his recovery.

God Bless to you both.

Marie

[Arn’s bladder]

Thank you Marie ! He is very glad to be home, but it’s a long road ahead. Haven’t been involved in this type of major surgery before. Each day is an adventure, we’re both tired. Onward and forward !

God Bless you too Marie,

xxoo Arn & Kory

[Gord]

Arn and Kory – thanks for posting about where things are at. Sorry that Arn had such a tough time of it. I guess the best thing is that is behind you and he’s got that dang bladder out finally! Though these are challenging days, I viewed it as the beginning of my road to real recovery and hopefully cancer free status! My wife also helped with the flushing til I could do it myself. A wise friend on this site once told me that I should measure my progress during recovery week to week, not day to day, as there will be hard days mixed in with the good. It was good advice and I did see progress week to week. Once those catheters come out, then comes the training of his neo bladder. It is longer process, lasting a few weeks or more. So be patient. There will be wet days and nights. I think I shared with you about the ‘cowboy hat’ but when I was training my neo, I kept a log where I marked down when I voided and how much I produced. It freed me from having to remember, kept me on schedule as I went from voiding every 45-60 mins to 3+ hrs, and provided proof that I was making progress despite the odd setback. Took me a few weeks. AVOID CONSTIPATION! This is not helpful, so do what you need to do, and introduce harder to digest foods slowly. I lost 30 lbs during this post surgery recovery. Hang in there you two, sounds like you are over the worst and into the hard work and promise of recovery. If you have any questions, don’t hesitate to ask! It gets better!

Gord
RC with Neo
June 2013

[Arn’s bladder]

Hi Gord, good to hear from you ! I told Arn about you, that you have had a Neobladder for 3 years now. He was happy & encouraged when he heard that !
I do feel that we are on the road to recovery. The operation is over. This week was better than last week. I’m going to give Arn the info on how you kept a log for proof that he is making progress. We go back to VGH on Sept 20. He will have a cystogram to see if the bladder is leaking. If not, the catheters come out. If it is leaking, will have to leave them in a bit longer. Once Arn can get around better, he can wear normal clothes and go for better walks. His pain is pretty much under control. Should get the pathology results in 2 weeks, honestly not really worrying about them. Worrying more about constipation! ha ha. Arn says toast & peanut butter works for him, I got him to eat a small bowl of bran flakes too, and came home armed with some chocolate Fibre 1 bars. I’ve heard these are every effective !! Apparently the peanut butter worked while I was out getting groceries etc. Constipation causes so much pain, I know he will go through hell if we don’t treat it right away! So, now we move on to incontinence. I think it will be okay. Both of us have been really tired and cranky & we do apologize to each other. Arn got a nice get well soon card from work, which was nice. I told him I’m going to send him a get well soon card too. He laughed. Will ask questions as situations come up!

thank you Gord, stay well ! xxoo Arn & Kory

[Arn’s bladder]

Hi Gord, I do have a question. What does the urologist do to detect if the cancer has come back? I know they don’t do cystoscopy’s, because the bladder is gone. Are you having yearly check-ups now?

Thank you Gord, Arn & Kory

[Gord]

During surgery they will have removed a number of lymph nodes (13 for me) which will all be tested, as well as everything else they removed, and should all be in your post surgery pathology report. Make sure you get a copy of that.

After that, I had a full CT scan (pelvic area, abdomen and chest) every 6 months for 3 years, as well as blood work. Had a follow up and consult a couple of weeks after each one where I got to look at it with my surgeon and discuss any complications. Last one was this past May. I am now moving to an ultrasound exam and blood work every 6 months. Next one is scheduled for November.

My every 6 month chats were helpful as I adjusted to my new normal. I actually had a couple of cystoscopies during the first year, and ended going back in for day surgery to remove bladder stones, and to widen the neck of my new neo during the first year and a half.. These had both impeded my ability to completely empty. This gave the surgeon a good look at my new neo up close and personal so I did not mind, though it was inconvenient. Haven’t had one in well over a year now.

Gord

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