I shared a post on the page recently that used a term - NED.
I realized that not everyone might understand the specific terminology - I know I didn't at first.
It is different that Cancer Free - which is the term people most want to use, and believe.
But its different - feel free to google that shit if you don't believe me. I did.
NED is sometimes used in replacement of "Remission".
Remission meaning the term that says - waiting for it to come back. Some state that it means - dormant, in hibernation, waiting to awaken (not exactly a comforting thought).
Some cancers continue maintenance treatments in remission, just like I kept on my treatments for just over a year and a half after my last recurrence and tumour removal surgery in mid 2016.
Cancer Free has been a challenging term. I have talked to a couple oncologists, and many patients about that term. What does it mean to them, and what is expected for the future.
I feel that I will never achieve Cancer Free.
I explained it - stating that Cancer was contained in my bladder, but wasn't under control. If they couldn't gain control, and they feared it would breach containment - I would lose my bladder to become Cancer Free.
But, to keep the plumbing intact, I will forever have the challenge of - it is currently considered under control, but how long will that last? Is it dormant? - like a volcano, waiting to erupt (get the visual out of your brain).
Its the sword of Damocles - remember that story? that will forever be hanging over my head. Why, because many would consider my situation as remission, currently No Evidence of Disease. But with a best case scenario that I will have 60% chance of recurrence for the rest of my life. With my age being dramatically younger than the average patient, I will need to live with it for 20+ extra years.
Not overly comforting.
I have talked to a couple people that seem to find difference between NED and Remission. Which is a fair assessment, but I don't use the term remission, because my oncologist didn't.
My doctors won't use the term Remission or Cancer Free, they say "No Evidence of Disease", but they then state when the next time we intend to meet for them to look for Evidence again. This is how the dance will continue - forever.
Cancer Free - is the desired goal.
Remission and No Evidence of Disease - are the most likely status people will have.
Comforting to feel that the battle is done for now, but knowing that you may have to fight again, is something people don't want to think about. So, live your life - Memento Vivere (means Remember to Live).
May is Bladder Cancer Awareness month - check out many of the resources available at www.bladdercancercanada.org
May 14th is also my Cancerversary of the day the Doctor told me I had Cancer.
Post a Comment