Undergoing Chemotherapy, I have experienced and expressed, both verbally and in writing, a loss of cognitive function in my brain and even stopped driving my car because I almost wrecked it due to cognitive impairment and a huge reduction in my ability to assess danger and risk and my ability to respond to it.
This occurred before I ever looked up Chemo-fog or Chemo-brain and seeking information was entirely a response to my lived experience in an effort to understand what was happening to my mind. I even described it as a loss of my cognitive abilities before I ever looked it up, because that was the most accurate description I could come up with.
A little discussed part of our brains is the white matter, which is essentially the wiring of the brain that connects all the grey matter together and the loss of cognitive function is related to this white matter. Not only can Chemotherapy affect the chemical structure of this white matter system of wiring it can also make it sluggish which can last for a considerable period of time after Chemotherapy has ended and can be experienced in phases or waves. Studies have found that chemotherapy causes, to a greater or lesser extent, ‘impaired cognition characterized by deficits in attention, concentration, information processing speed, multitasking and memory’. [1]
It is not my job or the purpose of this piece to explore the science behind the effects of Chemotherapy on the brain, merely to point out that the science exists and to reassure people undergoing Chemotherapy that the effects are real and serious, despite the denial of clinicians who should be better informed and should also know better than to poo poo people’s lived experience of the distress caused by Chemo-brain or Chemo-fog or impaired cognitive function, however we choose to express it. At the very least, people undergoing Chemotherapy and experiencing loss of brain function are owed a suspension of disbelief from clinicians and to be taken seriously.
My own experience was that a senior Consultant Haematologist dismissed my concerns and my distress as a ‘subconscious projection of anxiety’ about Chemotherapy and he withheld critical treatment information from me because he thought, without discussing it with me, I might abandon Chemotherapy treatment altogether. As I pointed out to him, I have never suggested or even hinted to family or clinicians that I had even for one moment considered abandoning Chemotherapy, such an idea never even occurred to me.
He said that whilst a colleague of his believes in Chemo-brain, he does not, and he is entirely impervious to reason on the subject.
His projection of his personal beliefs and his attitude towards my real concerns has put me at risk and, not for the first time, put me in danger from the adverse effects and the real life experience of a loss of cognitive function and abilities.
I had no way to anticipate and certainly never expected that at a time of intense vulnerability I would have to fight to protect myself and find the inner mental resources to stand up to the arrogance of a senior medical clinician.
I began the process of Chemotherapy after an aggressive secondary cancer nearly killed me and I would not be alive today had I not undergone Chemotherapy. This is not open to question and I have no reason to doubt that the hospital and staff did everything in their power to save my life, which is exactly what they have done. That is not, and never has been, the problem. The problem is the unsubstantiated belief of a man in authority and a supposed man of science arrogantly dismissing and mocking a well documented and established effect of Chemotherapy on cognitive brain function.
The notion that injecting chemicals into the bloodstream, and toxic chemicals in particular, cannot affect the brain is so absurd as to be moronic. Tell that to a heroin addict. What about smoking weed, dropping acid or snorting speed or cocaine? Is that all fanciful projection?
If you find yourself in this position, and be warned, I’ve discovered that it is a shockingly common experience, get support, contact Macmillan Support Line on 0808 808 00 00 – available 7 days a week 8am-8pm, talk to your GP if she or he is supportive, talk and vent, if you need to, to carers and loved ones. Whatever you do, do not suffer in silence, that will only make matters worse.
It is intensely distressing. Believe yourself and your lived experience and get support and do not be bamboozled by ignorance.
Keith Lindsay-Cameron. 30 November 2020.
Conspiracy of Kindness 