I stumbled onto #patientchat on twitter yesterday where the conversation was around quality of life. My first reflection was that it was something I didn’t really think about – quality of life wasn’t on my radar before cancer.
T1 I didn't really understand quality of life until cancer treatment … now I think about it regularly #patientchat
— Rebecca Hogue (@rjhogue) August 5, 2016
It isn’t that I didn’t have health issues before cancer, just that I didn’t have to undergo treatments that reduced my quality of life. I didn’t have to make decisions where my treatment decisions would directly affect my quality of life.
When I hear those words “Quality of life” it brings back a very specific memory. I remember walking along the the Guadalupe trail (the path behind our condo) mid-way through my Taxol chemotherapy (the second drug). I was struggling with the side effects of the chemo.
The drugs had effected my ability to process visual cues, such that I could no longer drive. I also had neuropathy that was causing pain in my feet. And fatigue. Overall I felt pretty crappy. I remember thinking that if this was my life I don’t want to continue treatment. The thought had with it a tinge of fear – the fear that I didn’t have much more strength to continue fighting, and yet I knew it was temporary, and that gave me the strength I needed to keep going. One might think that this sounds a lot like depression, but it wasn’t. It had more do with with quality of life than it did with sadness. I could deal with it because I knew it was temporary. I would get better. I just didn’t want it to be my every day. It was the first time that I truly appreciated the idea of making treatment decisions based upon quality of life.
Now I find myself in regular conversations about quality of life. These are conversations that people who have never had to face these decisions can understand. They think that they would just keep trucking along, doing whatever treatment was recommended. But the reality is, when you get into it, there is a certain time when quality considerations take over. This is even more the case when it is the difference between a prophylactic treatment (e.g. hormone therapy) to reduce a potential threat (recurrence) versus a known hit to quality of life. There is no one right answer to this choice – and chances are, if you think there is only one answer, then you haven’t been put in this position.
For me personally, I tolerate side effects for as long as I can. When they get to be intolerable, I try something new – or I stop, I take a break. I don’t beat myself up for it. I don’t look back on the decision either. I remind myself that you cannot change the past – but also that I know at the time I made the best possible decision I could. The side effects clearly got to a point that I could not hack it, I just needed a break. If that turns out to bite me later, so be it. The reality is, that sometimes quality is more important than quantity.
I have made other such choices in the past. I am reminded of round-six of taxol. I went into my oncologist’s office on Monday and refused to go to chemo that day. I had had enough. I needed a break. He, of course, convinced me to go back on Thursday, and perhaps add one more week after that … which turned into two more weeks after that. Just enough to get me to the time when we could do the first surgery. I don’t look back on that with any regret. I remember just how miserable I was. I remember that walk along the path and the thought that I just couldn’t live like that.
All I ask is that when someone says “I stopped for quality of life issues” that you appreciate that it is something that only the person experiencing it can truly understand.
Feature Image CC0 via Pixabay