Caregiver Versus Patient
In May 2008, my life changed permanently. I was told that I had cancer, prostate cancer to be exact, stage T3c. The only option for me was radical prostatectomy. I had just turned 55, and for the first time in my life I was going to be disabled and need help just to get through each day.
A difficult time
My wife Sue was working full-time, as was I. We were fortunate enough to have our three children early, so they we already pretty much on their own, each doing well and independently going through life.
So I go through this surgery. After a day or two I’m out of the hospital heading home. My wife had to drive, as I could not. Cut up; seven holes in my stomach, drainage ball in the wounds, drugged up, tubes coming out of my man stuff, pee bag on my leg. Not sure how to even go to the bathroom and barely able to stand up.
My mind is asking if I will still be able to have sex; did the nerve-sparing surgery work? Funny, considering I could not even take care of myself. I would find out later I could remove that concern from my list, as the nerve-sparing surgery was not so nerve-sparing; end of that stuff. In the next few weeks there was lots of pain, blood, pee, crying, diapers. Yet Sue stayed strong and tolerated.
My Wonder Woman was there to help me
As days went by, my poor wife continued to put up with one angry, disabled leader of the house. All this while still keeping up the house and working. I felt terrible for putting her through this. I was not sure I’d be up to that task. I was not a good patient. I was used to doing things myself. My wife tolerated me and nursed me back to some independence. I went back to work. Life was heading back to tolerable.
We breathed a bit. Then the next few years brought more hell. Heart attack, block arteries (PAD), bladder cancer, plus the prostate cancer chemo side effects and the ADT hot flashes. I was tired all the time. I prayed to die at one point; I was not a happy guy, I was depressed. Yet Sue still marched on. It must be the mother skills I guess. Or maybe that thing called love. Got the picture? Half a man, being taken care of by Wonder Woman.
Quick jump to 2022. We made it through. I got my mind right and turned this crap into a positive. I tried to help others and changed my whole lifestyle. Sue and I were both retired now and enjoying some of the happiest times of our life and marriage.
All good, right? Nope.
Swapping roles from patient to caregiver
Our oldest daughter got breast cancer at 46. Double mastectomy. Wonder Woman brought out her cape and headed to her house to help her get through. There was much effort and time helping our daughter fight her way back. Wonder Woman takes the cape back off and comes home after that.
All good now, right? Nope! Sue’s life forever changed. Wonder Woman, the love of my life, hit her wall. She was diagnosed with breast cancer. Guess what she needed: help for the first time in her life.
I finally got to love her through this beast, as she did me for so many years. The first thing out of her mouth was that she did not wish to be a burden to me. I told her never and not to think that way again. She was down a few months; I saw her suffer. Her self doubt and her fear. Pretty much everything I went through. She is way tougher than me, though.
Telling my wife it will be alright
I really cannot put into the right words what it feels like to see the person you love most in the world hit with cancer. As a patient, you look in the mirror; you feel it. As a caregiver, you pray for empathy and understanding. The best I could do was hold her and tell her it was going to be alright. Being a cancer veteran of two primary cancers, I knew she would be okay – but how do you get them to see that?
I felt deep sadness for her knowing what she would be thinking about for a while. Life or death, will my mate accept the new me? Can I ever just have happy thoughts again? All the doubts that go with a diagnosis.
I told her again and again that she could never be a burden to me. We are long haulers, fifty years next year (we are going to Italy to celebrate). I served in the Army there in 1970. I really want to share the beauty with her while we can.
Looking back at the patient vs caregiver roles
For me, the patient role was easier than the caregiver role. Why? Because you can affect your path.
Caregiver: man, it's so very hard. You are an outside observer hoping to help the patient stay positive and have some type of life and dignity. But there is not something you can always do. Sue asked me once what she could do to help. Being direct, I said not a thing. Just love me and let me fight my fight.
I did tell Sue that I was going nowhere. This was our fight together. She loved me through so much. I feel blessed to be able to meekly return the favor. I'm mad that I needed to; I never wanted her to have this stuff. I can't hit her level of service, but I've tried to be a good caregiver to her.
Some good news
The best news is that we are all recovered for now. Sue's cancer was early-stage. No mastectomy or chemo, and she is now taking her meds and feeling the aches and tiredness, as of my writing this. We both hit 70 this year, amazed we are still here smiling and standing by the grace of God.
We hope to help others taking this walk of cancer with love and letting them know they are not alone.
Do you have ways of managing your mindset for big decisions?