Having recently completed a trip that I had planned for a while, one of my bosses asked me how it went. I told her how the trip had special significance to my cancer fight and how it took on a new meaning after not being released from oncology as I hoped, and I talked to her about how the trip affected me. I made the comment to her (also someone who fought her own cancer battle), I said "It's weird the way certain things trigger these memories and feelings, it's almost like PTSD." She replied "It is PTSD!"
Her words struck me as odd. I know people with PTSD, and some of them have a lot more to worry about than I do. After all I was basically disappointed that I have to keep going back to the doctor, that I'm still a cancer patient. That's all. Yes, there are certain triggers, certain things that cause memories to come flooding back, but that's just life. That happens with lots of things right? Every time I smell cow manure, I get flash backs to the county fair and start look for deep fried anything.
Later on that day, I just Googled "PTSD" and "cancer", thinking I would find a few anecdotes here, or casual observations there. What popped up on the page astounded me. Studies, LOTS of studies on the subject. And they all came to basically the same conclusion, it's not just in our heads...well it is, technically, I guess...but a lot of us are experiencing it.
There were tons of articles but the same results seemed to be popping up in every study. One out of every three of us experience this. It only shows up AFTER active treatment, usually when patients are in their monitoring stage. It can start as soon as 6 months after active treatment, but many experience it at about the three year mark. And the trigger to cause the onset of the effects doesn't necessarily have to be cancer related, but it brings back the cancer thoughts.
Before I go any further, I don't think I have "post traumatic stress disorder". As I mentioned, I know people that have PTSD, and I wouldn't even begin to compare my problem with theirs. However, I do have SOMETHING going on. And the research shows that clearly a lot more of us do too.
That's when I started getting a little angry. Further reading on the studies shows that very few oncologists even realize that this is going on.
For those that haven't been to an oncology monitoring appointment it goes like this, you sit in a sterile waiting room (literally, because chemo knocks out your immune system). You look at the pile of old hard candy (because chemo also dries out your mouth), trying to decide if you are desperate enough to get a piece. Then the phlebotomist calls you, puts you on the scale while you try to claim that your shoes weigh 50 pounds a piece, takes your vitals, and sucks out about 4 gallons of blood for various tests, spells, and incantations. Then, before they shuffle you off to wait in the oncologist office, they ask where you are on the pain scale, physically and mentally (you know that little scale of various emojis before they were emojis, ranging from happy face emoji to frowny crying face emoji). That's where it dawned on me when the breakdown was.
Going into my last oncology appointment, I was excited. I had my monitoring extended once, but had been told by everyone...except the oncologist, that this would probably be my last appointment ever. When asked where I was psychologically, I picked a "3" out of "10" ("10" being the most stressed). After I was told to continue monitoring I was absolutely devastated. Had anyone stopped me on the way out the door and asked me to give my number on that scale again, it would have been an "8" or a "9". This was the failure. This is where no one is paying attention. And I don't necessarily blame the oncologists. Like many of the studies discovered, oncologist are trained to fight cancer, not delve into one's psyche. Most doctors aren't cross trained. You don't go to the vet, have them spay or neuter your dog, then ask them if your own tooth has a cavity...well I know one person that might, but she's the exception.
One in three is a pretty significant number. That is what surprises me. How can 33% of us be ignored and forgotten about? If I handed you and ice cream cone and said it's $5 and there is a two in three chance it will taste delicious, but a one in three chance it will taste as bad as a rock concert restroom smells, you probably wouldn't do it. There is a 67% chance you will have fun on this roller coaster, but a 33% you will get seriously hurt or killed...are you going to wait in line?
Although, there is tons of research, when I went to the major cancer resources to find out what help there was out there, the websites had surprisingly little information. The research is out there. It all basically says the same thing, but no one really seems to know what to do with that knowledge. And in the mean time people are falling through the cracks. I haven't thought about harming myself, but the studies do have morbidity rates that are higher than people not going through it.
As in many things with cancer, we need to start educating each other, and passing along what helps us, and that its a normal feeling, and how to get help. We've always been good about warning about cancer insomnia, scanxiety, and chemo brain, but not this whether it truly is PTSD or whatever it is. Maybe it's because it happens after most of us have left our support groups or no longer get the longer talks with the oncologist and their team. But we have to make a change somewhere. We have to get the word out. We have to help each other. We have to do something.
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