I have been searching for anyone else who flies in the rare air of surviving Stage IV Triple Negative Breast Cancer by year's of extreme palliative chemotherapy? I even reached long term NED after living through a particularly hellish cocktail that was frying my nerves but fried the tumors too,, so I kept going knowing something was very wrong with my brain, sensory input, and stabbing nerve pain all over my body..
It paid off and after taking my blood counts down to bare minimums and my bone marrow was damaged, I had to stop palliative chemotherapy. I was told the cancer would bounce back without any Chemotherapy, but it didn't. The other thing that didn't bounce back was my nervous system and brain function. So I am a medical miracle, surviving my diagnosis. However, living in this body full of neurological damage has been very challenging. In time, the gift of survival begins to morph into the reality of how to navigate Living with real, permanent executive functioning challenges and other nervous system disorders. EG I have struggled with body temperature regulation, etc.
Rather than making the most of my survival, doing something awesome to help the causes that are important to me,I am having so much difficulty relating to people after years of cancer treatment cognitive impairment. I am different, straining my brain to accomplish simple easy tasks. I frequently don't dress and groom because those tasks drain my cognitive focus out of my short period of daily functioning.
Over the years, I have found it easier to drop my friendships than deal with people who refuse to accept that I can't just be the former fast me. Healthy people talk about me and my attitude problems amongst themselves, their only experiences with cancer treatments being for survivable diagnosis. Lower levels of toxicities are administered in treatment when cure is a possibility.. The kind where some chemobrain is a temporary inconvenience and often disappears over time after treatment ends.
I used to be an overachieving busy professional who majored in Rhetoric at UCDavis. My career was full on negotiating, writing, giving training courses, public speaking, etc. I was active in social organizing, often volunteering or taking an office. My customers were mid level management to senior executives at national company headquarters. I traveled occasionally on business.
it has been so frustrating to loose access to words or word substituting. I loose awareness many, many, many times throughout the day, so working is something that just isn't happening again. Loosing awareness means that I forget the time of day, day of the week, month, etc. frequently needing to reorient myself to where I am, when it is now, and why I am there. I find it impossible to consistently pace my cognition so sticking to routines is impossible. Sometimes, I just can't function..it isn't a choice. I am not lazy. The brain just hits a fatigue wall and I am done functioning. I never quite know when cognitive fatigue will get so intense that I have to retreat to a quiet respite in solitude, limiting my sensory input and get the brain a rest. So making future comitments to friends or family is always tenative.
Yes, I appreciate how lucky I am! Yet, it has been nearly impossible to resume my previous social interactions because my experiences in my simple home life are completely focused on how to cope with short term memory challenges. I find group events so overly stimulating I quickly get cognitive fatigue. I explain to friends and acquaintances that I am disabled but they dismiss me with jokes about all of us getting older. Many jump to conclusions based on my healthy looking outsides, which have recovered well over the years. I have literally listened to woman at a luncheon argue with me that I am not disabled in the way I discuss. I left and found an alley where I just bawled and bawled, finally grasping that people will never understand what my experience of, "being," is like.
I no longer have the sunken eyes, hair loss, finger and toe nail loss that gave me accommodations for my socially unacceptable absences, tardiness, or verbal missteps. But... Continuing to live in disability years after last extreme bone marrow damaging Chemotherapy treatment is NOT understood by the general public. I struggle to maintain or make any meaningful relationships because it takes so much cognitive energy to show up anywhere on time, I run out of things to say from my simple world based on Ritalin, electronic timers, reminders, and lists. I forget things constantly so even if I did something kind of neat yesterday, I can't recall it or find my words to talk about it.
I found that my friends still expected the previous me, full of vigor, clever, fearless, curious, and most of all, non stop talker that could hold up everyone's end of the conversation. They get disappointed with me now, tell me that trips or events just are not fun anymore, etc. Meanwhile, I am exhausting myself to just, "show up," after many explanations about what I can handle or find overwhelming isn't grasped, So as I am either resented the following day, unable to get out of bed because they wanted me for a full day or I am viewed as a negative person when I.have a steamed look on my face as I try to cncentrate and filter all the visual and audio stimulus in public.
Anyone else out there that had to give up career, friendships, and total lifestyle due to extreme cancer treatment, (only given to terminal patients)... But somehow you survived to find the radical treatments left your experience of living a challenge of exhausting focusing strains? Any interruptions from others completely throws you off your desired next task, I would love to connect. This life is challenging and since few survive extreme toxicity late stage regimens given in a palliative setting, there won't be big pharmaceutical companies rushing to get FDA approval for the handful of us who somehow survived. No money in that. I couldn't get my insurance to cover contra indicated meds approved for narcolepsy, which also helped me to not loose my awareness repeatedly.
If anyone has found relief from permanent cancer treatment Neurological damage or happened to also survive crazy toxic chemo cocktails, I would love to know that I am not alone, I simply can not relate to most people who minimize my brain and neuro pathway damage. I previously had such a high IQ and high level of functioning that I am constantly reminded how diminished my functioning is. I am only able to accomplish a few simple tasks in a day before needing to rest my noggin. Kind of hard to live life with extra zest, (realizing that I am on borrowed time), when I can't operate my body with a chronically tired brain or organize a simple day out and about.
Anyone have solutions. I just adopted a street dog captured at humane society. My rescue dog Prancie has become my constant companion. She rarely disrupts me so I don't forget what I am doing and doesn't complain when I take my frequent quiet breaks. She brings such joy by being so happy at the dog park, She doesn't get angry if I can't keep a lunch date because I am having a particularly dysfunctional day, She enjoys me just the way I am at any point in time, I am helping her because she had socialization issues and my consistent presence has really helped ease her anxiety. Gives my life some sense of contributing to the planet in a productive way, just by being.
Girl, I feel your pain and frustration.I'm not the same person after my treatments either. I did one reply to a post on CIPN. Like I said in that post I tried so many different medications and nothing really helped until my doctor put me on Lyrica. If it wasn't for that drug I couldn't function! I still have some pretty bad days where all I want to do is cure up and sleep because my body just doesn't want to get going. I'm single and don't have the support of a spouse so I have to get up and go to work every day. So I take it one day at a time. Hang in there and see if Lyrica will help you with the neurological/neuropathy. Just know that you aren't alone in this struggle.
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