"I'm sure you're happy to get back to feeling normal again since treatment ended."
My last chemotherapy date was January 27th 2017. 3 years ago.
Nothing has been "normal" since.
I know I am not alone when I say there are many silent and visible effects that come with cancer treatment - no matter how far out you are. Aside from my physical limitations, I have and continue to experience many neurological changes since treatment.
I had done a neurological assessment shortly after completing treatment (2 months post-treatment). I was below average (compared to the population my age who had never undergone any type of cancer treatment) for every test I have done. I have neuropathy in my fingers and toes resulting in slower fine motor skills - so buttoning a shirt takes much longer for me than it would for someone else - along with poor blood circulation in my hands and feet.
I have trouble finding the words to make sentences when in a large group of people because of the many conversations happening around me. I'm slower to process the information so multitasking has gone out the window long ago. My medical team also found that I now have a stutter. Because I have trouble coming up with words since treatment, my speech has been scientifically considered "delayed."
Prior to treatment, I would have considered myself as a very organized person, but organization has taken on an all new meaning to me now. To many it may seem like I have gone overboard with the degree to which I organize my life, but what they don't know is that it's a necessity rather than a preference - because I will easily forget the simplest of things otherwise. I have an agenda in my school bag, my purse and my phone calendar, with sticky notes posted to remind me to look at each of these things.
I was told that these effects were all temporary. That I would feel "normal" again once the chemo has officially left my body, and so long as I worked on it, I would be "normal" again. I work on it day-in and day-out. I have games that I was suggested I play on my phone daily to help with that - so for the past 3 years I take 10 minutes a day to play these word games and whatever else to help. Since the brain is one unit, working on that would have a domino effect on everything else (neuropathy, being the most challenging for me, if I'm being completely honest.)
BUT, here we are. 3 years later and after another neurological test completed for the sake of seeing where things stand, I have confirmation that nothing has changed. My stutter has gotten 1% worse when compared to the last test (woohoo for only 1% decline in the last 3 years!) My fine motor skills have not improved and I continue to have difficulty with my short-term memory. This is my new normal. The doctor said this is just what it is unfortunately, since every case is individual. Yes there are things you can do, but they're not cures. They just help make it easier.
I'm in awe of what 2 years of chemotherapy has done. I used to take those 'simple' things for granted prior to treatment. The confidence I once had when speaking has gone down drastically because I can't process information the way I once did. Tying up my shoe laces takes 2-3 tries because I can't feel if it's tight enough the first time. All these things may not happen everyday - there are good days and bad ones, like anything else. But they exist.
This isn't a pity post. I'm not asking for sympathy. Heck, if you read to the end of this, I'd be surprised, but appreciative. What I am asking for is for there to be awareness. Stop thinking (and saying) people immediately "go back to normal" once treatment is all over. Even my medical team was surprised because I am one of the few that has been affected the way I was with my type of treatment. There's nothing normal about it. We want to feel normal, yes. But make no mistake about it (because I don't) - this is our New Normal. Finding a balance in that has been key, although frustrating and disappointing at times. Although it's no fun to bring up why something may take me a little longer or why words escape me, if I have to explain so that they will understand and be aware of these challenges for both myself and others who have experienced cancer, then that's what I'll do. I've experienced the infamous line, "Ignorance is bliss." Some people lack understanding or simply don't want to. That's ok, too. But I am grateful for those who listen.
It's simple, really: all anyone wants is for others to be kind. You don't need to understand to be kind.
