My name is Scott Johnson. I was a reasonably healthy 58-year-old male until early 2019.
I started feeling fatigued and confused and made an appointment with my GP. Eventually, he sent me to a hematologist, who ordered an abdominal ultrasound. In the meantime, I’d had hematuria, and had been to the emergency room, where I was referred to a urologist.
I am a terrible patient. I have a difficult time describing my pain, or symptoms… I forget to tell doctors information… and I edit what I say, because I don’t think it’s relevant.
I appreciated the way my GP stuck with me when my only complaints were fatigue and confusion… I felt like I didn’t give him much to go on. And I’m grateful to my hematologist, even though he was frustrated with me for not letting him know about my hematuria earlier. Between us all, the culprit was eventually found.
On Sept. 6, an ultrasound found a mass on my kidney. A Sept. 10 CT scan confirmed it. I was the victim of a radical open nephrectomy Sept 27, to remove my right kidney, and the 11cm stage 2 / grade 1 tumor.
The thing about my recovery though… is the surgeon, in my post surgery exam, he repeated 6 weeks back to work… 6 weeks… like the character from Rainman. I got the distinct impression that all his patients were expected to recover and be back to work in 6 weeks. I specifically asked him, should I see my GP about going back to work?
“No,” he replied, “6 weeks.”
So, I went to see my GP. He had no problem agreeing I needed more time off. My short-term disability insurer disagreed, and I wound up in a sizable financial hole. But, nothing, compared to many others I’ve heard from.
Now, back to the Surgeon, and dealing with him. I was not aware of KCCure or any other online group and was relying on Google. Prior to the surgery, I compiled a list of questions, which in hindsight, was embarrassingly short.
Someone told me that they’d be scared out of their minds in my position, and I replied that I think I was too stupid to be scared. And that’s not far from the truth. I was almost blissfully unaware of what this all meant, before I was in surgery, allowing someone to chop out my kidney.
I prepared another list of questions to take to the post surgery / staple removing appointment. He answered them quite thoroughly… but I believe I was actually making some inaccurate statements myself, and he was letting them slide… not correcting me. I got the answers to my questions, yes… but he only added certain information, and if I wasn’t asking, I wasn’t necessarily being told.
Had I been aware of online resources like KCCure and other groups, I probably would have had a better list of questions. I have learned far more from these groups, than I have from my doctors.
I was off work for 16 weeks, and have just returned. What I have tried to tell others who are new to the nephrectomy game is this: Recovery time varies a great deal. I have seen people say they were jet skiing days after surgery. And some, are on the complete opposite end of the curve… plodding along…, recovering, but at a snail’s pace. I had about 6 different areas of pain in my belly after surgery, and on any given day, different areas hurt. Over time, a few of those areas are mostly just a bad memory now. I still have discomfort in a couple places, but it does seem to be subsiding.
I was asked to tell my story. This is it, in a nutshell, I hope maybe it’s helpful to others. I don’t know how it ends.
That’s the thing about cancer, it suddenly makes you grateful for today, and uncertain about tomorrow.
