When someone shares a cancer diagnosis, most people have a mental picture, a previously conceived image, of how the course for them will go. For most people, this will be the image of the person going through radiation, chemotherapy, and maybe even surgery. Most of the time it will end with the affected person either celebrating their remission or, in many sad cases, a funeral.
The term “chronic illness” is nowadays understood by most people, health care professionals, and the public alike. “Chronic cancer” however, remains a brain twister for most, regardless of their knowledge of cancer or other health conditions.
So, imagine yourself a newly diagnosed patient in the information overload era we live in. Things like the internet, search engines, and endless digital sources at their fingertips have patients frantically trying to make sense of this new life they are thrust into. An enormous amount of new information, often outdated information, floods an already overloaded mind.
Now imagine finding some information about medullary thyroid carcinoma (MTC) and starting treatments, mostly surgery. In the beginning, most patients are so shell-shocked. They will simply go ahead with what is recommended by their health care team. While I was going through the initial treatments, I didn’t even know what questions to ask.
One question that will arise for most if not every patient, is the question of prognosis. Whenever I did bring up that question, I never received an answer. I was either redirected to a different question or would be told something along the lines of “that is not of concern to me right now. Right now, I am simply focused on making sure this treatment is successful.”
Never once at that time, did I clue into the fact that this cancer wasn’t that easily treated and would become a chronic illness. Six months after my diagnosis, and after joining a Facebook support group for MTC patients, this became very clear to me.
All of a sudden, the information available to me was different than the Google searches I had so frantically engaged in at the beginning. It was a blessing to see patients living a fairly long life with this cancer, however, it was also an awakening moment to understand the words “I am in remission,” will never be true for me.
Read more about the prognosis of MTC
It became evident MTC is not just a cancer, it is a chronic illness. An illness that will always be a part of the patient’s life. Once that realization hits, it almost feels like receiving a brand-new diagnosis. It is no longer simply fighting this cancer beast, it becomes a completely new lifestyle, one that will never go back to the way before, not ever.
It becomes this never-ending cycle of appointments, new physicians to meet, medications to adjust to, and constant fear of what the next scan would show. Chronic illness is a completely new kind of beast to conquer.
It is a roller coaster that just never ends, not only in juggling everyday life but also emotionally. The emotional part of having cancer is quite difficult to maneuver but oftentimes patients do get to get off the ride. When it comes to MTC, however, that is impossible. It is a ride that will only end once one is laid to rest. The only saving grace with MTC is that for many patients the ride is quite long.