A Brief History of My Cancer: From Catheters to Continuing On
Last updated: November 2021
Last we left our brave hero, he was checking into the hospital for a radical cystectomy, prostatectomy, and neobladder build with installation. He might have had his oil changed while in the shop but that cannot be confirmed.
Important note for all reading. This post, as well as the part 1 post, represent my specific experience with bladder cancer and should not be construed as advice or medical direction. This is simply a recap of my journey based on my awareness and knowledge at the time.
Your mileage may vary and you should always listen to trained medical personnel. Do that, please.
Back to the story...
January 2013: bladder cancer surgery
I was in the hospital for 15 hours from check-in to recovery room to in my bed in my room. Long day for my wife. I was asleep for most of it.
The surgery was successful. Removed bladder, prostate, and my memory say they did 40 "margins". Margins as samples of tissue around the tumor and some of my lymph nodes to check for cancer cells. All negative.
Doctors assured me, "You'll never worry about this again."
Cystectomy and neobladder surgery post-op experience
Tubes, ports, pads, and of course my lovely, lovely Dilaudid pump. I had a drain tube from my abdomen to remove fluid buildup from the surgery.
I also had a drain tube from my ureters to drain urine as the neobladder healed. No one told me that, so I initially thought I had the external diversion instead of the neobladder when I woke from anesthesia. I was a bit upset at that point.
All in all, I spent 4 days in the hospital and started walking around the day after surgery which is a bit difficult since for males this surgery causes your testicles to swell to about 10 times larger than normal... I'm talking grapefruits or more. My wife is still in shock 8 years later when we reminisce about this fantastic time in our marriage. #Protip 1 - Be prepared.
Day 5 they sent me home
By day 5 I had been discharged home to finish recuperating. I was sent home a bit early as my bowels hadn't woken up yet and therefore 2 days later I was completely backed up and was having chest pains from all the fluid backing up inside my body.
A trip to the ER and readmittance
We went to the ER. They took an x-ray, saw the backup and pumped my stomach to relieve the pressure, and readmitted me for 3 more days. That was a fun few days before they sent home again!
February 2013: drain lines and catheters
I spent the first week or so lying in bed and draining various bags and pouches and catheters. I had to regularly clean the drain lines and catheters with a saline solution using a syringe without a needle. Pushing saline into the line and suck it back out for draining.
Did I mention the big catheter I would have to wear for about 6 weeks? Yeah. Big, big fun. Protip #2 – there will be rubbing at the catheter point of entry. Try to keep that lubricated and immobile if possible. It is not pleasant when it gets irritated as you men might expect.
I moved to the chair in the living room to get out of bed. I started taking showers about a week after coming back home. I was careful to not get the 6" incision too wet to keep the staples from rusting. Kidding – surgical staples don't rust.
March 2013: adjusting to a neobladder
Around mid-March got my staples removed. My experience was painful as the staples had healed into my skin a bit more than my doctor expected. They had to really pull hard to remove them. No local anesthetic.
My wife couldn’t watch as they pulled the staple and all my skin stretched up until the staple went "pop" and came out. This was probably the worst experience in my whole journey, to tell you the truth.
By the end of March got my catheter out and all my other tubes, bags, accessories. Once the catheter is out the muscles needed to hold the urine in the neobladder are not quite strong enough, so in the interim, I had to wear pads/diapers.
The surgery takes out some of the muscles you used to use to hold your urine in and the remaining muscles require training and strengthening to get stronger and the neobladder expands you start to gain control.
April 2013: warming up to my neobladder
Back to a pretty normal routine. If normal is having to self-catheterize 4 times a day and fill/empty the neobladder with saline through the catheter to make sure it stays clear and open for urine.
Truth – it is much much easier to self-catheterize than you would think when you first hear you will have to do this. It’s not that bad.
I managed with diapers for most of the month. Moved to large pads like sanitary napkins for about two weeks and then to smaller pads. I was 90% continent during the day at end of April.
May 2013: back to business
By this time I was back to traveling for business. I also went to the beach with my family.
Basically, I'm in "post-cancer" mode from mid-May 2013 – almost 1 year from "discovery day" back in June 2012 - 5 months from surgery in May.
One year from bladder cancer discovery to cure
So there it is in two posts. There were a few other hiccups from 2013 until today such as a staple that moved from my neobladder to the urethra that needed to be removed. But nothing really worth noting.
That is this hero's neobladder surgery experience. I use the word hero humorously. Nothing heroic in doing what you need to do to get back to living a life you can control and one that isn't controlled by cancer.
If there are areas you want more information from my neobladder experience let me know in the comments and I might be able to create a post around that question. If you have a question, I'm sure many others will have the same question so don't be shy.
How long did it take for you to receive a bladder cancer diagnosis?