Looking Back
My parents retired from the farm and lived in a small town near the Manitoba Saskatchewan border. I remember talking to my mom on the phone. She said that my father had to go to the city to see about some tests that he recently had.
I took a few days off from work and went out to visit them and drive him to the city for the appointment. It turned out that he was diagnosed with prostate cancer. The doctor said that it was serious but treatable. It was a quiet trip home. I did not know what to say and he did not either. He felt that it was a death sentence.
My father decided that he wanted beam radiation treatments. Their home was a 3 hour drive to the closest cancer center. He packed up a suitcase and went to stay with my brother for who lived near the city. 39 treatments meant that he needed to stay there for 2 months.
The cancer center had volunteers that drive patients from their home to the cancer center and then drive them back home again. That was a 40 km round trip… 39 times. I often think about the kindness of that driver. My brother told me that the driver helped my father deal with the stresses of the diagnosis and treatments. They became good friends.
When he came back home my father never really talked about his cancer and the effects of the treatments. He quietly lived past 90 and died from old age.
What I took from my father’s experience was that people do survive cancer. Survivability is improved with early detection. I made sure that my doctor checkups included the PSA and finger tests.
My prostate was never an organ that stayed in the background. I had many infections and irritations starting in my 30s and extended throughout my life. In some ways… I felt that it was just a matter of time. In my early 60s the PSA numbers started creeping up.
My urologist decided that it was time for a biopsy.
Biopsy
I did not know what to expect when getting a prostate biopsy. I put on my skimpy little hospital gown and hopped up on the examination table. There sure seemed to be a lot of people there. The doctor who was going to do the biopsy took some time and described the procedure.
First we will freeze you up. That’s good I replied. Some men who have had that procedure later told me that they were not frozen before the biopsy. They said that it was a very unpleasant experience. I guess I was thankful for the freezing but that biopsy caused me a lot of problems and also changed my life.
A device up my butt and the doctor is running a choreographed team. It turns out that all those people had a job to do. Click… are you comfortable?… click… click… Take that sample… Click… Click… Is this in the right place… Click… click… click…How are you doing… Click… Click… Hand me that… Click… Click… We are almost done… Click… Click… Do they look okay… Click… Click… Congratulations we are finished. It seemed like the freezing was wearing off for the last couple of samples. They took 16 samples and told me that would send them off to the lab. Someone would let me know the outcome after they we analyzed.
After the biopsy they gave me a mega dose of antibiotics and a little card stating that I had the biopsy and to show it to a doctor if I had any problems. Only a few days later and I did start to have problems. I went to walk in clinic and saw a doctor. I described my symptoms and showed him the card. He barely read it and told me to come back in a day or so when the urine cultures are analyzed. I am not sure if was a mistake to go to a walk-in clinic rather than emergency. It was my mistake for not pushing the point or going somewhere else.
The next morning my wife told me that I was acting kooky and we were going to emergency. The emergency doctor took the whole kooky thing seriously and had me on IV antibiotics immediately. It turns out that those types of infections are capable of breaching the membrane that protects the brain. That’s where the kooky was coming from.
I was told that I needed a full week of treatments of IV antibiotics. He then said that I would administer them to myself. I thought to myself that maybe the kooky has not worn off yet. But it was true! I was handed a cooler full of injectable vials and was told that CPAS (Patient Client Access Service)) would show up at my home and teach me how to do this.
It turns out that it is not a difficult thing to do. The little IV needle is already taped to the back my hand. It has a fitting that fits the injectable vials. Take the vials out of the fridge a bit ahead of time so they warm up. First saline solution. Next the antibiotic. More saline solution. Easy if everything goes right. Except it didn’t. Once the IV needle got plugged and twice it came out… CPAS fixed it once and the emergency staff fixed it the other 2 times. In the end I was never sure if this was a regular practice or if I was just part of a weird experiment.
Around that time I had been stopping at the Urology center at the hospital to get some advice on the dealing with the infections. I was sitting there waiting to see the nurse navigator when she walked up to me and told me that my biopsy results were back and that I had prostate cancer.
Decisions
Finding out that I had prostate cancer was a surprise but maybe a bit expected. My father had it. My prostate was problematic anyway. My PSA was high. I talked to my urologist and he felt that it was caught early enough. Next step was making a treatment decision.
My wife and I went to the Urology Center and met up with a nurse navigator. She walked us through the various treatment options. In my case the treatments options came down to surgery or two different types of radiation treatment. I am not a big fan of surgery so that option was easy moved to last place. The brachytherapy radiation treatment is a quick one time treatment but my prostate was enlarged and not a good candidate for that form of treatment. That left beam radiation treatment. I was okay with that choice since that was the treatment that my father also received. My wife and I talked with the urologist and we decided that the beam radiation was the final choice.
I feel that I must comment on the nurse navigators at the urology center. We hear many comments about broken hospitals. Whoever thought up the role of nurse navigators and found the funding for them must be congratulated. They provide easy access to patients that need and want information. They treat the patients with kindness and respect. They are really good at that job. They are a bridge between the patient and the doctors and the hospital machine.
Around this time I was pretty stressed and wanted to talk to someone. The cancer center has counsellors! I called the cancer center and find out that I am not a patient there yet. I am not a patient so no access to the counsellors. “When will I be a patient?” “When we start treating you.” I guess maybe some parts of the hospital system are a bit broken.
A nurse navigator mentioned to me the there is prostate cancer support group in the city. Cool I said. I checked the information their pamphlet. No meeting over the summer. There was a phone number listed and I called and talked to Murray. Just talking to someone who has gone through the cancer journey was helpful.
Now I wait for treatments to start.
ADT and Tattoos
It turns out that a lot of things happen before treatments start.
There are xrays, scans and bone scans that need to be done to determine if the cancer has spread to other parts of the body. Appointments… take the tests… wait…
Part of my treatment was ADT (Androgen Deprivation Therapy). This is a drug that blocks testosterone hormones in my body that the cancer cell use as fuel. It reduced the size of my enlarged prostate which in turn makes it easier to target with the beam radiation. It also slowed down the cancer cells from spreading.
I show up at the cancer canter and talk to a nurse about my first ADT treatment. I find out what to expect and give permission to start. She produces a rather large needle and says that this is going to be a bit uncomfortable. The treatment that I received consists of slow release “pellets” that are injected under the skin on my belly area. It was not as bad as anticipated. Every time I received this treatment the nurse always apologized that it was going to be uncomfortable. I appreciated their compassion.
When you mess with hormones, it does things to the body. An obvious effect is hot flashes. Women go through these hot flashes. I gained a new perspective on what they have to deal with. I also became quite emotional. I would react to many things happening in my daily life. It did not really make me sad but I often become quite teary. Even 3 years after the final treatment I find that many things still trigger strong emotional responses from me.
Another ADT effect is reduced bone density, muscle loss and fatigue. Exercise and good diet are important here.
I did mention that strong emotional responses brought on by ADT treatments. At the same time I also felt that it dampened the outside world. Perhaps like being wrapped in an emotional cocoon. Some people hate it but at the time it felt comforting.
As I neared my treatment date, I had another appointment at the cancer center. Beam radiation needs to be aimed somewhere and that somewhere was my prostate. The radiologists like to install a tiny gold bead in the prostate which is used as a target. I had discovered earlier in my life that I am “Allergic” to gold or perhaps alloys used in gold. We decided that the gold pellet was not required since they can use other methods to aim the beam.
I did get my first and only tattoos there. A small mark on my groin and one on each hip. They are not too noticeable but they are there when you look closely. These marks are used to help align the beam.
Somewhere is this time period I do remember talking to my oncologist. He described the treatment plan and the expectations for the treatments.
Remember the support group that did not meet for the summer? Once the fall came around my wife and I went to the meetings. It was powerful to be in a room where people had gone through similar experiences. Once and a while they told stories of their experiences. I was not ready to talk yet. It took time to realize that talking about cancer and was okay and helped with the healing.
Time was moving forward and I was getting close to my first treatment
Radiation
When I first thought about getting radiation treatment, I assumed that it would be painful. All those movie and TV shows about radiation made it seem dangerous and painful. It turns out that it was not what I expected.
I was told that I would get 39 treatments over 2 months. Typically a treatment every weekday excluding holidays.
I was given a small list of things that I should do before having my treatment.
Have a bowel movement before the treatment
Wear pants that can be lowered easy
Have my bladder as full as manageable
A small list but an important one.
The bowel movement was fairly easy for me… just do it!
Get a pair of sweatpants… easy down… done!
The Cancer Center in Saskatoon is located on the grounds of the University of Saskatchewan. I would take the bus to the university and ensure that I was there around an hour before the appointment. I would stop at Tim Hortons and get an XL steeped tea – one milk one sugar. The Arts Tower was next door to the Cancer Center. I would find a quiet place to sit and read a book and drink my tea. When my appointment was close, I would quickly walk across the street and check in for my appointment. Full bladder… checked off.
There was a small waiting room there for people waiting for their radiation treatments. Some people were in a private space and not interested in talking. Other people were quite willing to share their stories. It as a powerful thing to hear about their life, their fears and their hopes for the future.
By the time I got into the radiation treatment room that XL steeped tea is doing its job. My bladder is full and I do need to pee. The process is straight forward. I climb up on the table and lay down on my back. Those handy little tattoos are used for what they were intended for. The table shifts left right up down until I am in position. Some device shifts position and rotates around my groin area. The table does a bit more shifting. Now for the radiation. The device hums and rotates. Maybe 20 seconds. Done.
I am free! Off to the bathroom. Goodbye steeped tea pee.
I cannot say enough good things about the staff there. The receptionists were always friendly. The nurses were always there to answer any questions. The radiologists made me feel welcome and they treated me with respect and dignity. The radiation oncologist was there monitoring my progress.
Once the last treatment is finished there is a tradition where the patient rings a small bell attached to the wall. Available staff cheer and clap while I ring it. Someone took a photo of me to keep.. standing there beside the bell. A tradition that allows me to say goodbye to this stage of my treatment.