What You Don’t See

Recovering from a disease is never easy. It doesn’t matter what you were diagnosed with – there is a cycle that we are all a part of……ignoring symptoms, then Googling symptoms, actually going to the doctor, then more doctors, diagnosis, treatment and recovery. When we are “cleared” of our illness/disease/ailment people who haven’t experienced that in their life seem to think that the worst is over. And people are well meaning for sure, but the worst is not necessarily over.

I am “cancer free” (but not officially declared N.E.D. or in remission) but I am living on a maintenance chemotherapy regime of 1800mg, twice a day of Xeloda. Two weeks on, one week off. Then every three weeks I get bloodwork and an infusion of Mvasi. This will continue for an undetermined amount of time. People tell me “at least the cancer is gone” and “wow you look so good” but there is so much that goes unseen when it comes to those statements. (If you are not a fan of TMI, I don’t suggest you read the next part.)

The meds have given me side effects such as: dry mouth (in the middle of the night especially, it wakes me up because I feel like I am choking and can’t swallow from the dryness)…..excess saliva…..I have very little taste left, and what I can taste when I eat and drink is “off”, I am basically eating and drinking just to survive at this point…..I have little sense of smell left…..I constantly have some type of congestion in my nose…..I have hand and foot syndrome to the point that my feet are so swollen it is difficult to put shoes on and when I do I can’t wear them for long periods of time…..when I walk the sensation is like walking on thumbtacks strapped to legos…..my hands are incredibly dry, discolored and the skin is blistering, cracking and peeling off my fingers…..I have little feeling in the first three fingers of both hands…..the tips of my fingers are so painful that I can’t perform basic functions without wincing in pain…..I cannot use warm or hot water on my hands or feet…..when I go outside and it is a sunny day my hands immediately begin to swell. If I have to leave the house for errands, work or anything else, I have to plan ahead of time what I am going to eat, because depending on the day, food sets me off and I wind up in the bathroom, a lot, and sometimes I am not fortunate enough to make it to the bathroom – so I make sure when I go places I know where all the bathrooms are, that I have an extra set (or two) of clothes available, and that I have an “out” if I need to leave because I have had an accident and do not want to draw that sort of attention to myself or have to explain why a 43 year old woman can’t make it to the bathroom. To get dressed it takes me twice as long and I also have to take into consideration the adult diaper that I wear when I leave the house and have a covering that I can wear to hide my butt “just in case”. If it is a particularly active bathroom day, I am dehydrated, exhausted, have the chills and “lower region” pain. As much as I want to be out and do (mask wearing and socially distant) activities, I live with so much fear and apprehension that my symptoms are going to strike that I only venture out for short periods of time. Maintaining an attitude of happy, levity, jovial and nonchalant about how I am really feeling is exhausting. And don’t get me wrong, I do genuinely feel those emotions, but not as often as I want and not always as real as I want them to be.

This is what living “cancer free” looks like to me. These are the things you don’t see. This is the ugly side that people don’t really want to know about and the things that other survivors of illnesses/diseases/ailments try to make palatable for others on their social media posts. We try to educate and inform, not bring people down. But it is easy to scroll past, refresh the feed and see what else is out there. We blog, we post, we share because community is important, knowing there are others out there who have the struggle and we aren’t alone, that our loved ones are in it too, makes a difference. There are things you don’t see but it doesn’t mean that they do not exist.

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