Been A Long Time Dark Friend
One of the more common issues I deal with in support of patients and survivors is something called “scanxiety,” a combination of the words “scan” and “anxiety.” Though some will argue that it is not a real word, those of us in the cancer community can assure you, it is quite real.
Scanxiety occurs at two different times, during diagnosis, and during the follow up phase in remission. There is the anticipation of what will be discovered, rather diagnosed, and the paralizing fear of “is it back.” And while those untouched by cancer may see this as irrational behavior, quite the contrary, it is quite normal. And to be clear, this is not a mental disorder, but a rather very powerful defense mechanism. But as I said, and I stress, IT IS A NORMAL THING TO EXPERIENCE.
A patient/survivor can experience all kinds of symptoms from crazy heartbeats, irregular sleep habits, a messed up stomach especially resulting in awful bowel reactions, and of course, unbelievable levels of stress resulting in lashing out.
There are all kinds of ways to deal with scanxiety from meditation and exercise to medicine. But as I always point out to everyone, keep everything in perspective. Control, you do not control how the scan will come out. But you can focus on your actions afterward, whether good news or bad news. That you can control. If you are symptomatic, you need to remember, that just because you may have had those symptoms when you were diagnosed, you likely also had those symptoms previously in your life when there was no cancer. If your scan comes back clear, see you next time. If your scan gives bad news, you are going to deal with it, because that is what you do. Is it the result you wanted? Of course not, but you did not come this far just to throw your arms up in the air.
Of course, there will be no one cheering more loudly for a negative scan for anyone than me. And if there is one thing I hope that patients and survivors hear from me, the scanxiety does get better, and it does go away in time, as time goes on. Trust me, I remember those days my first year in remission as if they happened today. And I know that first year in remission is the toughest. But once passed that first year, it does get easier, there is a confidence that builds each year until you hit that five year mark and your oncologist tells you at that point, unlikely the cancer will come back, and no more scans (for the cancer at least).
So if you have been following me and my last few posts, I am dealing with lymphedema in my right arm and hand, likely a complication from my treatments for Hodgkin’s Lymphoma thirty-seven years ago. The belief is that the high-dose radiation that I received has developed and caused raditation fibrosis and scarring, strangling one or more lymph vessels, hence causing the swelling. There was one little curve thrown in, I also have two enlarged lymph nodes under my right collar bone according to a recent CT scan. Though doctors do not feel as concerned for it as I do, I am flashing back to when I was diagnosed with Hodgkin’s Lymphoma back in 1988. I had similar issues then, including the lack of medical confirmations (without a biopsy) that I do now. To be clear, a diagnosis of Hodgkin’s now would be considered a new Hodgkin’s, not a relapse because of the time that has gone by. In any case, that is really putting the carriage before the horse. I am nowhere near the biopsy point yet.
So on Thursday, I had my first PET scan, done on my entire body from my finger tips to my toes. I was not nervous about it other than the usual stress of the IV needle and whether or not they would listen to my concerns needing ultrasound to find my chemo ravaged veins (get a port if they offer it to you!). I definitely was not anxious about the scan either. I am just used to so much medical stuff being done to me, I just put it on the calendar, and make sure I show up. My appointment was completed in less than two hours.
Typically I get results for any bloodwork or imaging studies (whether x-ray, ultrasound, CT scan) within a couple of hours, in time for my doctor appointments involving those studies. I had not other appointments on Thursday, soooooo… just looking for the results of the PET scan. More importantly, get my answer and forward plans for returning my hand and arm back to normal.
Today is Saturday, still no answer. Normally scanxiety would result in panic or even terror for some people, “something has to be wrong!” My scanxiety is more about annoyance. I am prepared for all the possibilities and remedies, but this has been going on for two months, and I want my arm and hand back. And I can admit, I have been checking my medical portal pretty much every two hours. You know the expression, ” a watched pot never boils,” that’s me. Even though I know I am now going through the weekend still waiting, I am still checking the portal just in case. Nope, still not there.
And so I continue to wait, the hardest part. Thanks Tom.
Paul's Heart 