Thursday, August 16, 2018

third week recovery from misdiagnosed terminal cancer

I'm doing unnaturally well. Today is 3 weeks of recovery. First two weeks were a shellshocked pain pocked post operational ketamine fueled multiverse of painful solitude punctuated by nurses and tasks and family visits. An omniplex which can be defined as a realm of simultaneous chaos and understanding.

Ketamine is useful in that it dismantles not only the highways between your pain source and your brain but dismantles your perception of your bedrock reality such that you have to improvisation-ally rebuild it. It's like having to construct a street show in real time on the fly after being hit by a truck or some mythical thing with a powerful tail.

There were times where I had a stoic belief that I was not entirely housed in a hospital but a hybrid of a hospital and a south east asian village built on a mat of quartered macadamia nuts nurtured by elders and I was aware of the byzantine social and cultural intricacies by which the community was both stable and evolving and in some part actually fueling the hospital. I'd overhear the villagers talking and make my conclusions. Sometimes they talked about me. They mentioned at one point I'd make a good prospect for the south African market. I felt special.

At night when I pushed the buzzer because of pain or some other need it would appear that the nurses dutifully but with the barest sense of reluctance would appear from a spiral staircase under a trapdoor in the floor at the base of my bed and that I wasn't in a room but more a hallway between these two integrated worlds. It all made a lot of sense at the time.
That was then this is now.

After day 12 things picked up, my core reasserted itself, I could sit up by myself and a few days later could lie down unaided and within a couple of days I gained a lot of physical strength and mobility. The doc had always been dour, in intensive care the day after he was all, "Five major things can go wrong in the first five days. " after 5 days it was "Not out of the woods yet." but by day 15ish he came in and told me the histology [cellular analysis of whatever they've removed from you] was that he'd taken 35 lymph nodes from around the site and none of them had shown any indications of cancer and also the tumour had not gone through the wall of my esophagus and was just sitting on it so the likelihood of it having travelled anywhere were essentially nil. Additionally my recovery and lack of major complications, [I'd had a short lung infection in the lung they collapsed for the op but that healed with antibiotics within days] has so far had me the fastest healing and most positive prognosis out of any patient he's done this operation on. So there's that. Still nil by mouth though. Eating starts in 3 days and I'm being fed 16 hours a day by tube.

But fuck it I had 2 pieces of hard caramel candy, 3 sips of sugared latte and a cig yesterday when they unhooked me and gave me the afternoon off, cos Iyam what Iyam
I have a huge learning curve ahead

Resets and relearns and vit b injections every couple of months. Will go home next week if tomorrows scan is progressive as all before have been, and be fed 8 hours overnight and experiment with what my body will deal with during the days. So it will be reduced but essentially what I've been experimenting with my whole life.
I'm fed for 16 hours via tube about 2300 cals overnight from 6pm til 10am.
Today they let me have sugared black coffee, they said no milk but I bumped into a cow and one thing led to another and I spent 3 hours drinking a small strong latte so there.
I get a final scan through the big donut downstairs tomorrow I had one this last monday and they are trying new methods out on me. They get me to drink the indicator minutes before the scan which is a new procedure and on monday they asked if I could spin round one revolution on the hydraulic feeding stretcher that glides you through the CT Scanner so the fluid could coat what they wanted to look at and perhaps walk around a little also.

Given that a week earlier I had to be helped on and off my bed and onto the thing and this week they were asking for gymnastics I gave them a wry glance and mentioned I'd worked in circus but even so were they aware of what they were asking? Negotiated that yes if they lowered the narrow thing I'd give it a shot then I did rotate from back to side to hands and knees then back to back again. I then got to my feet walked the length of the scanning room did a full 360 pirouette on the ball of one foot, returned, lay down and said 'Lets do this thing.'
Bottom line I'm as good as cancer free before even the next poss stage of clean-up chemo and healing well but life will not be the same.
Hoping to write more and make a name for reviewing street fests from the bottom up so to speak being one of the tribe but that's future days.
Grateful for all the wellwishing and support you've all lent. It means everything.

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