Cancer treatment - operations, radiation, chemo - has a very dramatic impact reshaping one’s life: the richness and harmony of one’s existence is reduced to One Dimension ruled by a feeling of Chaos, despite the regularity of the chemo calendar stretching through the months ahead.
Maybe because it’s a “down” day, but today I really feel three powerful, basic wants:
- I want my body back!
I have lost the comfortable, quiet harmony of my body and me! It has been replaced by an ever changing cacophony of strange sensations that make me start to believe in dualism. It is not the scars, the mediport implant & blood clots. The aches, pains & budding nausea are only part of it; my mouth feels chafed & filled with ever changing tastes, most of which are awful (licorice and curries seem to help in my case). My favorite drink, water, tastes bad! Neuropathy adds undesirable tingling (I call them collectively the cribbles), while at the same time numbing sensations that removes simple functions. Normal temperature feel icy cold, and cold drinks can be life threatening. Every time I chew the first bite, the muscles in my jaw sting painfully. There is the subtle drone of headache. And on a day like this, the total combination of me is simply …useless… not good for much more but hanging in bed, or completing simple chores.
Mainly, the harmonious symphony that was the assembly of all that I was seems lost - for now. It is replaced by a jarring concoction of sensations all screaming for attention.
In my case, none of these issues are extreme, so I have no reason to complain! But it really feels like my body is not my own any more. And - damn it - I liked it for 57 years, and I want it back and feel one with it!
- I want my time back!
Unless you have the big bomb of a complication putting you back into a ward, which really messes with your schedule, everything seems centered around chemo day, and the good and bad days after it. At this stage of my treatment, very little is predictable. The first two weeks, I had two good days. Then I was in hospital for a week, and no chemo for that. The impact cycle is anywhere from 7 - 10 days, so with a weekly schedule, I am never not under the influence. For two days I am hyper due to Decadron, while completely tired, since I do not sleep. Then I crash.
I have a good amount of functionality, tolerate the chemo reasonably well, and had some good days, so I am grateful. But really my whole life is centered around this experience and how it makes me feel. It is clearly, a significant loss of control. I like to do many things, now I am often left with limited choices.
It is difficult to live up to the commitments to people important to me - family, friends, work. I like doing stuff instead of listlessly hanging out, and I want my productive time back!
- I want my social interaction back!
In many ways, this is contradictory to my writing here. And it certainly is not the fault of caring family, friends, and colleagues.
But due to experiences 1. and 2., and perhaps the need to cheer myself forward to that distant goal of completing treatment six months from now, most of my conversations are about cancer and me. I really would like to move beyond it, but am not sure I can at times. On a good day, work makes it easy. But that is still the exception.
I made a conscious choice to be open about my cancer and its experience. Many people tend to be more private, sometimes out of fear of prejudice, sometimes out of need for privacy and not wanting to be a center of attention. I highly respect that. Perhaps I am just a noisy guy, but after my diagnosis, and when I prepared for my journey, I noticed that there really was not that much information about what it really was like to go through this. That is when I decided to be completely open.
Every one of our journeys dealing with cancer is likely to be different, and mine is more hopeful and easier than many. But I do hope my openness will help others.
Enough kvetching, but I want my body, time, and social life BACK NOW…
And I want all of these in more than one dimension!
Life in this world really is a most beautiful thing…
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