Life Forward in Remission
Over the last few weeks, I’ve had the pleasure of listening to and discussing with a few people about their experiences once they’ve been coined “in remission” clearance. The road with blood cancer is quite interesting as we all have our different takes, based on our experiences or how we look at what has happened from so many lenses. However, it was quite clear to me that a shift takes place at that time that has many puzzled.
In remission. Now what?
The words in remission or inactive cancer are words that many hope and dream about, whether their time with cancer is short or long. The end game is what many hope to meet is to return to some kind of normalcy. Though many understand that there really is no such thing as returning to normal, I think it’s fair to say it’s understood this means a newer prospect of life and moving ahead.
Although my cancer has been inactive, I cringe when I hear others speak of their bout with cancer recurrence. I believe though, we hope we have a long cancer-free stretch. Depending on your specific blood cancer, the probability of that is what it is.
The possibility of “it may or may not” coin (and who really wants to flip it to see the future) is the question. The constant wonder, based on someone else’s case, is always another worrisome burden - one you want to shake. But the naysayers - those who’ve experienced a few ebbs and flow of cancer-free and back to cancer - can also be our worst critics.
It's great...but not what you expected
Life forward includes an interesting mixture of residual effects of a long treatment, and those meds that may or may not be in the script for a manageable life afterward. Things will be slightly different than when you were first treated and under constant watch and review.
The cheers in constant blood work every week are now down to 1-2x a year. The time off from certain drugs allow your body room to get back on track, and trips to the bland white and sterile treatment rooms suddenly, though gleefully, halt.
The latter mentioned are good prospects - aren’t they? Though we move on with a break and a wider and hopeful tomorrow (whether short or long) - what about that lingering fatigue, those joint and bone pains, weight gain, or any other remaining issues you’re not quite informed about?
No longer special
So back to some of the small comments mentioned in the beginning. I hear a select few feel there’s a change in the need for that constant ear that watched us in the beginning. It becomes lessened based on our development in being better. It’s a great deal to move forward right?
It is, but sometimes you feel like you’re not part of this group that was special and meticulously cared for. Once deemed inactive, the doors shift and questions and new pains are considered part of the normal.
I feel like, although many make it to this level, there tends to be a disregard for newer issues, that doesn’t throw an alarm for concern when your spike still shows zero.
So now what? Well, crawling into a shell and just coping is not going to cut it. Self-advocacy is a long haul, despite the naysayers. The patient is the only one in control in keeping the conversation of their care part of moving forward and staying focused.
The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it
How long did it take to be properly diagnosed?