Welcome To Prostate Cancer
The coming out party

Prostate Gland

This is where the Prostate, is right below the Bladder. The urethra is cut to remove the Prostate. This is where my complication happened.

Foley Catheter

This is a Foley catheter. I had two for most of three months. This is not common, but complications can happen which was not made known to me.

The Radical Perineal Prostatectomy;
This is the basic operation I had. Since I was under a general anesthetic I have no way of knowing how much of this was done to me.

This was the start of a very different fall for Judy and I. It was found in the summer of 2012 that I had prostate cancer. Apparently it runs in my family, as my older and younger brothers both had it before me. Why did we get it and how did it start who knows. What would I have changed if I could. As far as I am concerned I was living a good and healthy life style. 

It was found in the summer of 2012 that my PSA (Prostate Specific Antigen) was going up. Since Pete and Paul had had their's out I should have a biopsy to find out for sure.  My family doctor booked me with a urologist who did a probe from behind and said it is enlarged but should be okay. Then he booked me for a biopsy at a local hospital. Normally they use 12 needles and with the help of an ultra sound probe snip samples from the prostate. It was a great day for me as they set up thirteen needles. I can say it is not the most fun for a guy. When I went back a couple weeks later to hear the results it was found that yes I did have the cancer and he wanted to book it for a set date. I said I wanted a week to think it over. I went and talked to Judy and then went to see my family doctor and decided to go for it. If left too long what might be no big deal can kill you in a long hard way.

Sept 5 2012 was the start of a very tough time. I should state here that I have a blood problem known as thalassimia minor.This means a low hemoglobin levels in my blood tests. The operation was a success for sure as I now do not have prostate cancer as of my last test. To my knowledge there are three ways to get that "Bad Boy"out. I had what is known as the radical perineal prostatectomy. This is done from below and my doctor said it is less invasive than others. I don't know about that but lets say for a while it was very hard to sit! After the operation I had two units of packed cell blood transfusion. This was done on the 6th of Sept and I was set to check out on the 7th. Here comes trouble!!

Sept 7th started like any other day at that point except I was laid up in hospital and not sure even how to get out of bed. I also had no idea if I would be sent home as was the plan since my blood count was so low. I will state here that besides the folly catheter that allowed me to urinate I had a Penn rose surgical drain from my backside to drain blood and other fluids from the area of the operation. This required changing of dressings on a somewhat regular basis. In the morning Judy the love of my life and my champion advocate came to see me and find out what the plans were. The  CCAC representative came in and said she could not tell me my blood count but if it was right I would be getting out. This was all disturbing to Judy I as I had not even been out of bed yet. What if I could not walk or some other complication presented itself?  This is where we started to see the real flaws in the Canadian health care system. All the parties do their job well except for one really big flaw, they do not share or communicate their ideas or plans to each other or more importantly to the patient. Before the operation or any procedure at the hospital we sign over and over that they can share "MY" information with anyone but they do not share their plan with the most important person, the patient.  As luck would have it I did figure out how to get out of bed and my count was okay, considering my blood type so I was sent home. Now the "REAL" fun starts!!

Home nursing care is set up in Ontario by CCAC. They have a list of service agencys which they call in order to select the one that will take care of you. Mine was St. Elizabeth which is a good agency but the funding is not always enough to cover what is needed. They called on the 7th to say they would be out on  Sat afternoon. Judy and I needed help like "right" now. I was leaking blood from my drain and we had a limited amount of bandages. When sent home they do not give you any information about what to expect in the way of bleeding and what bandages may be needed. I was very lucky that Judy when we met in 1970 was working at a hospital as a ward clerk and had taken nursing before that. Then in 1990 to 2000 Judy went to University of Windsor and University of Toronto and received her Bachelor and Masters of Social Work. This gave Judy the knowledge and credibility to fight the good fight. Judy made many phone calls and over time was able to get her point across that Judy is not to be messed with and knows what she is talking about. I feel sorry for those who are sent home from what ever procedure with out a really good advocate. It took time but with the help and guidance of the nurses and  Judy we were getting familiar with bandage and catheter handling. 

My next appointment with the hospital was Sept 17th. I was in to have a scan done of my urethra to judge if my surgery had healed enough to remove the catheter. They said at the time it was good. I then went to see my doctor on the 21st at which time he signed a form for the nurse to go ahead. The morning of the 22nd there was something a little different with the blood on my drain bandage but we didn't pay it much mind. The nurse showed up and the time we waited so long for had finally arrived. The nurse deflated the balloon and started to remove it. I stopped her and asked if I could do it. There is a very strange feeling at this time from inside the penis. She said go for it so I slowly pulled it out. Little did we know that this would be the start of bad times for several weeks. Three hours after it was out I was urinating from my surgical drain down the back of my leg. It was time to return to the ER at WWH Met Campus. The catheter was reinserted and we figured we will be good now. WRONG!!

I made regular calls to my doctor to let him know that I was still leaking back there and finally after a few days he made a date for me at the hospital to do a cystascopy. In this case the doctor took out the catheter and slid a small camera up the urethra tube to see what is the trouble. I was watching and there was a very small leak in my tube near the bladder and so he decided to put in a second catheter called a supra pubic, which goes in a little bit below the belly button. The tricky part is I was not ready for it and it meant putting a hole in my skin with only local freezing and then pushing the tube into my bladder. It was one of the most tense situations I have ever had. Now I came out with two catheters and Judy was really shocked she had never heard of such a thing. This worked well for a short time then they both stopped working.

Catheter Care: Catheter care was one big issue with the doctor that was the cause of lots of trouble. Catheter care means making sure it is working , clean, and properly handled. It should also mean irrigation. Catheters can become plugged with blood clots and other floating debris from the bladder. When this would happen I would leak more from the back. This would mean calling our daughter who lives close and getting a ride to the hospital sitting for a long time then the nurse would take a few moments and flush it out and we would be good to go. We kept wondering why doesn't the doctor just give the visiting nurse the okay to do the irrigation then we could just call St. Elizabeth health care and be done with it.

Bilateral Nephrostomy: That would be a catheter into each kidney that was at the time working just fine. Now you would think that a doctor would be aware that with two catheters already working pretty well there would not be much in the kidneys but no he decides to make a go of it and puts me under the needles to get the catheters in. Dam it wouldn't work! The kidneys were too flat! Too well drained, lets bring him back and do it later. When they called and said we will have you come in on this day I said NO, no more holes. 

Surgical Drain: My surgical drain was there to drain the fluid like blood etc. from where the prostate was taken out. After a fourteen days urine started to come out it as well. Nice when you can urinate from three holes at once! Such a wonderful experience! A guy can stand there and pee like never before. This would get worse of course when the catheters plugged up and there was no where else for it to go. Finally near the end of Nov I came in the house to check how wet I was and it fell out on the floor. Now I was leaking out a hole in my butt that in time would close up and I would have a neat little puddle of urine in my groin area until my urethra finally healed up and it was absorbed by the rest of the body. We had our concerns for a while but as luck would have it all healed up okay.

Dec 2 catheters come out, finally. I had an appointment with the doctor at one of our local hospitals and the plan was to check and if all looked well the catheters would be removed. I showed up on time and when it was my turn I was wheeled into the exam room. The doctor had the nurse drain the balloon that holds the catheter in and I asked would she mind if I took it out. The nurse said that was okay with her so I slowly pulled it out. The doctor inserted a camera and lots of water to flush me out and there in my bladder was the other balloon from the other catheter. We looked closely at the urethra and there was no more holes. There was a lot of junk floating around caused by the body not being happy with the catheter being in. The doctor was happy with the look of it all so he removed the camera and then took out the supra pubic catheter. There was water coming out and the nurse gave me a towel to catch it so I could get some cover up on for my walk to the change room. 

Now What: Well once the catheters were out and I went home and we started the recovery of it all. I found it as being like a new born who is being ask to not ware a diaper. The toddler is used to just going where ever but they know they need to change to make everyone who cares for them happy. It was the same for me. I figured out I needed to retrain my body to Pee in the bathroom not my pants. I wore a diaper for a while and then felt I could go with my usual underwear and a pad and as I write this paper on 8th Feb. 2013 I believe I can start to go with just what I wore before it all began. I am feeling as I felt before the operation and my weight and strength  are coming back. 

In closing I will say we are changing doctors as the one who did the operation while it was successful he is just to push push and treated me like a piece of meat instead of a person with a problem. While I was going through it all I met many Windsor ON. urologists. One in particular was very observant and open to listening to us while he tried to care for my needs at the time. It took a while for me to get an appointment. He did find an opening for me and I look forward to seeing him later this Feb 2013. We look forward to a long and exciting future, Judy and I. We will also advocate for better communication between health care workers and the patient. 

Ted Wheeler