I was prompted to write this after a friend of mine recently questioned me on my experiences with side effects from chemo, he wanted to see if his experience with chemo brain was the norm for chemo patients.
I struggled really badly from chemo brain when I was on treatment to the point that I could start a conversation and then eventually without realizing trail off and forget I was even having a conversation to start with. Sounds comical, but it’s actually a pretty mortifying/terrifying thing to deal with on a daily basis when its brought to your attention. It was almost like a chemically induced dementia I guess, but at the age of 24.
It actually makes your world a little smaller when experiencing this and can have you feeling quite isolated without really knowing why. I was an intensely creative person who wrote poetry and lyrics, sang, wrote music on guitar and did visual arts and I was also an avid reader and loved movies and learning new things before I had started treatment.
Once I had experienced another 27 cycles of heavy chemo drugs as well as steroids and all that goes along with it, I found myself to be a shell of my former self. The funny part was I was so out of it at the time I didn’t even realize how bad it had gotten.
I went from the creative sociable young person that could get up and sing in front of hundreds of people, or write a new song in an hour to someone that started being unable to finish sentences with simple words, heh think of the Simpson’s episode where Homer “gets smart” for a short time then he loses it again and tries to ask for a spoon but only manages to ask for a silver diggy thing or something along those lines haha. It’s a bit like that, except I was intelligent to begin with then lost it somehow. The even more frustrating part of it is that the intellect is actually still there and the knowledge but it’s just a constant search to bring the information to the surface, like it’s all been filed away under the wrong name so it takes so much mental capacity to think of it that you end up going at a snails pace with doing certain tasks and learning new information or even recalling old stuff that you would of normally had no issue with.
I think perhaps part of this chemo fog was also related to a new aversion to reading, listening to music or loud sounds and being in loud crowded areas. Whatever chemo did to my brain, made everything just so taxing on my mental ability that it felt like my brain was being overloaded with information when doing simple tasks. I remember watching TV and hating it, I couldn’t follow the plot so it became so boring to me and frustrating that I’d just avoid it altogether. It gave me great anxiety and even brought on panic attacks. Now around 8 years later, I’m still struggling with not being back at my 100% although I have improved considerably, the struggle was definitely not a natural aging process. I managed to complete a psychology degree but I had to do it by working my way around certain things I was struggling with. To write an essay now I needed someone to kind of be my “working memory” for me while I got ideas together so i could construct an argument. I had no lateral thinking anymore, I could only perceive what was the here and now without any real ability to plan or build upon ideas. It is seriously the most frustrating thing, to have all of this knowledge and creative ability inside you but it’s just trapped. My boyfriend at the time that knew nothing about psychology tried to help me with the writing process, I would explain concepts and my thoughts on specific things and he would help me piece it together. It was still all my work as I had to explain it all and know what was correct, to write it, but for the life of me I just couldn’t construct a sentence without it ending in tears of frustration. By the end of the degree though I did get some of this back but I believe it was doing these baby steps and having my “working brain” out sourced for a bit that got me through and gave my brain time to adjust.
I’m still uncertain if this whole issue is based more around serious anxiety and my brain is just in panic or whether it is an actual structural or chemical change in my brain. I had so many episodes where if i was exposed to really loud sounds or crowded rooms I would burst into tears from being so overwhelmed. I remember doing a gig with my ex one night and literally started crying throughout the set, I somehow managed to sing through it without too much embarrassment or people noticing. I was completely exhausted though by the end of it and a bit of a mess with my heart going a million miles an hour. It was exhausting trying to hold it together. Mentally, physically exhausting!!
Song writing I managed to get into again, but only briefly and still not with the same ease as I had always found it. Now if it didn’t come to me all at once it was so difficult for me to write a finished song that I would just end up angry at myself and get upset that I couldn’t do something as simple as I used to do. All I wanted was to express myself creatively but my mind would become a whirlwind of thoughts all coming in at the same time or nothing coming through at all. It made it almost impossible to finish a piece or come up with song concepts. The anxiety I felt about this only amplified the struggle and compounded the issues.
It is my hope that research doesn’t just go towards finding cures for cancer but also towards helping survivors live their best life afterwards. Merely surviving and not being able to feel like a whole person is not my idea of a successful treatment. I want for myself and others to be able to thrive and not just go through the motions. I think after all we endure through treatment (which is basically a solo war zone) we deserve to be happy, confident and able to live out our dreams. Thriving more than mere surviving is where it needs to lead.
Much more time needs to be taken to remedy side effects of treatment or change to treatments that don’t have these life changing negative effects. Once you finish your treatment you can really feel like you are on your own and that talking about any post treatment ill is being ungrateful, but why should we go from 100% healthy to a sick version of ourselves for the rest of our lives. I’m a young adult, I don’t want to throw away the rest of my life just because its too hard for someone to figure out the how’s and why’s of side effects. Just because you don’t have cancer anymore unfortunately does not mean that you’re “over it” and back to normal. It takes a lot of work, blood, sweat and tears.