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.
JaxTrax 
First, I’m truly sorry for all you’ve gone through. On an intellectual and educational basis, I understand your frustration. The average consumer does not understand our health care system. They don’t understand that health care objectives are NOT limited to a patient’s health status. They don’t understand that health care is a FOR PROFIT BUSINESS with conflicting interests between government, pharmaceutical companies and the medical industry.
As a physician, I agree that doctors are entitled to earn a living that compensates them for the QUALITY of services provided and RESULTS achieved. This belief, however, requires a physician to recognize that SOLUTIONS exist in MANY FORMS. Just like multiple financial planning strategies can ALL achieve desired results, so too, can multiple approaches to maintaining quality health and overcoming disease. Our medical model insists that ALL consumers conform to their ideology and methods to achieve THEIR desired results. Quality health care should be based on the CONSUMER’S NEEDS and tailored to satisfy these needs.
Chemotherapy drugs that extend life (often without improving quality) for 1 or 2 months at obscene financial and physical costs are commonly used. The consumer is not informed about this REALITY. Why are so many oncologists willing to use these poisonous drugs on their patients, but “off the record” claim they would NEVER use them on friends or family? Where is the ethical and moral responsibility these professionals are supposed to possess? When a doctor SWEARS to “DO NO HARM FIRST” to their patients in their Hippocratic Oath, are these just words to them? Do they feel any emotional attachment to LEARN about the VARIOUS approaches to TREATING HEALTH and DISEASE, or are they simply committed to implementing what they’ve been taught in medical school? Does any doctor actually believe the BEST OPTIONS ALWAYS fall within the LIMITED scope of what they’ve been taught?
A better health care system exists, but it requires the consumer to recognize their role and their responsibility in supporting their own health. It is up to the consumer to develop a NETWORK of doctors to gain multiple perspectives from qualified physicians of VARIOUS disciplines. As a TEAM, the FOCUS must be to RESTORE BALANCE to the body and mind rather than treating the SYMPTOMS of disease. If BALANCE is restored, symptoms dissipate. The reverse is NOT TRUE; a symptom free body (at any given moment) is not necessarily in physical and mental BALANCE.
Until consumers and physicians begin to accept their individual shortcomings and recognize the need to change the current paradigm of “disease care,” the FOR PROFIT health care system will continue to FOCUS on its FINANCIAL NEEDS. The consumer will continue to receive sub par care and treatments as a result. This is the REALITY until the consumer becomes brave enough to say, “MY QUALITY OF LIFE IS MORE VALUABLE THAN THE EFFORTS OUR HEALTH CARE SYSTEM IS CURRENTLY WILLING TO INVEST!”
LikeLike
Thank you for your comment. I appreciate it 🙂 I don’t believe it should be the sole responsibility of a patient to source so many different opinions from different specialists though. The amount of money it would cost me to compare advice from multiple different specialists would send me broke within a month and to be honest be confusing and draining, when all I should have to think about is the day to day looking after of myself to stay as healthy as possible. I believe multi disciplinary meetings between specialists to discuss patients needs is what standard practice should be. It may be fine occasionally to have to source multiple opinions yourself if it is a one off short term issue but with people with chronic illness or major health concerns I don’t see this as being a very effective or sustainable practice.
I agree we should be saying quality over mere survival as I have said in my own post but I believe most patients already say this and try to fight this on a daily basis but it falls on deaf ears or is responded to with a patronizing laugh as if we don’t know what we’re talking about (this has happened to me). I mean really, shouldn’t common sense tell us all that of course we want quality of life to be reserved and that this is an important focus of health care? Do we really need to have to voice this repeatedly? Shouldn’t this be assumed? I mean does any person wish for or choose to blindly accept a lesser quality of life? It shouldn’t be something we have to discuss or fight for so strongly, it is a given that all people even after illness want to go back to being as close to 100% as they can. Giving harsh treatments just because they get rid of a symptom but cause several other side effects is such a short sighted way of giving health care. It has it’s place, but if it is blindly followed without looking at alternatives each time then we will never fully further medical care and improve outcomes for people. I think statistics can be a dangerous thing in science sometimes. Statistics can take away any decision making process and make people go on auto pilot thinking statistically this has worked for many in the past, but we all know every person is so individual and one specific treatment has never been the fix all for everyone. Sucks to be an outlier and get ignored by the system. But some people (and I have experienced this also) are actually outliers and don’t respond to certain treatments in the same way as the masses. It’s a tough situation though, as I know this method works for the most part but it really can injure those that find themselves on the top and bottom of the bell-curve. I have a friend actually that had been given up on by her oncologist and they gave her 3months to live. Fortunately though her parents helped her with an alternative route and after taking cannabis oil, she is 100% cancer free and has been for a year now or so. It’s incredible to think if she had of just followed orders she wouldn’t be with us today.
LikeLiked by 1 person
I’m so sorry for the delayed response.
The intent was not to use a team of doctors for every aspect in health. This would be unnecessary as well as cost prohibitive. It was to have a team to be able to turn to INDIVIDUALLY as needed for questions regarding various diagnoses and approaches to restorative health.
I base this recommendation on the reality of health and disease. Should a health care system require a patient to interview doctors to establish a working relationship for future needs? No. The reality, however, is that a patient must rely on their primary physician for nearly ANY health care concern. One person simply doesn’t have all the answers. This is why it makes sense to have qualified doctors to turn to BEFORE a health crisis occurs. It provides an option among multidisciplines rather than relying on one path that often provides a poor prognosis.
I am also not so certain that patients are looking for quality over survival. I believe most patients are scared and desperately seek the medical field’s traditional options as the only viable approaches to this disease. They are so traumatized by the diagnosis, emotions interfere with quality decision making.
LikeLiked by 1 person