Those whose memories stretch as far back as yesterday may recall the following: “Today I have taken a beating from the arrogance of the medical profession in not just dismissing my experience of Chemo Fog, but by denying its existence.” To my face!
Not only did a medical expert choose to force my head under the water by denying my experiential reality, he placed his foot firmly on my head and held me under as he proceeded to soundly, and professionally, mock me.
The pain is impossible to describe as I am forced to remain in his presence because he’s the man responsible for my continuing treatment and therefore ultimate survival. A man who has trashed my experienced psychological reality.
The following is a screen grab from Cancer Research UK about what they describe as Chemo Brain.
This is the text from an email I sent to my heads of team, which was passed on to the ‘expert’ mentioned above, because I hoped my experience might help others, who’d no significant experience of recreational drugs to draw on, to deal with chemo fog.
Dear Dr *********
I now understand what this particular drug does. But only time and testing will reveal if that’s true generally or just my unique experience.
If I was taking this drug as a drug user, the unintended side effect would that it could cure or control my cancer, If I happened to be taking enough of it and if I just happened to have a Hodgkin’s or non-Hodgkin’s lymphoma. And I would doubtless be saying things like, “Far out man.”
I have been prescribed the drug to tackle cancer, the unintended side effect is that it is the best, cleanest and purest drug trip I have ever experienced. It is scientifically pure, not mixed with other horrible substances.
I have been doing to my home exactly what I would do to make it a safe drug space. I have been experiencing the danger the world is to someone on a trip (tripping) who is not fully aware of the dangers in everyday life.
For patients it doesn’t have to be called anything other than what it is. All the suggestions would be to help them manage the effects of chemo, that they are nothing to worry about, they are not going mad, but there are things they can do to make themselves safer. The exact same process I have just gone through.
I sincerely hope that you can test this. If it is shown to help, I hope in future patients can have a far better time and experience of chemotherapy.
I am vindicated by an uber straight organisation, whose clumsy words match my own. So moving on… I tried to reach out to the medical world. I see that they are not interested in how patients deal with and cope with Chemo Fog. So I shall keep it to my home pastures, A Conspiracy of Kindness. It is neither my job, nor desire, to save the world, that is beyond the reach of any of us, lacking even a mere fraction of the resources of the world destroyers. It is my job, my dream, my faith, my desire, my choice, to touch others, as I have been touched all my life, with kindness. A side effect of which may be to change the world.
No man can have a greater passion and motive for life and it’s piss easy. I’m already doing it.
Your friend and kindred spirit, Keith.
One thought on “Into the heart of denial – part the deux”
Keith, I am truly sorry for your horrible experience! I live in Kingston, Ontario, Canada. Home of Queens University. I was diagnosed, last October with metastatic colon cancer, and have been on chemotherapy every two weeks since. Fortunately my doctor is the head of the Oncology Department at the university. When I discussed Chemo Fog, with him, he acknowledged it is a very real thing, however they are still investigating how to relieve it. Hopefully help is on the way.
As a kindred old hippie, I love the “far out man” reference, and sometimes feel like I am slowly going insane.
Stay Safe, and as I often say, “choose to LIVE with cancer.” I refuse to acknowledge I am dying with cancer.