But how do you REALLY feel?

Its an interesting question, and one that I seem to be getting more and more from our close friends and family (Nancy, the big brother, my father). I seem to be able to deflect most questions about how I’m doing by pointing out that I’ve survived the first phase ‘ahead of the curve’ and am now waiting for the real challenge of radiation and chemo therapy to begin. Most people nod, understanding or appreciatively, and let it go at that. Sometimes there is a brief discussion about the implications of the treatments, but then they let it go and we get on with talking about the real business of living in this world.

But how do I really feel?

  • Guilty
  • Ugly, weak and damaged
  • Useless
  • Frustrated
  • Annoyed
  • Naive

Okay, so let’s address these in order.

I wake with my gorgeous girl in the early morning, and while she struggles out of bed, showers, does her hair and makeup, I lie in bed, slipping in and out of sleep. She has a tough day ahead of her at work. Yes, she went back to work shortly after New Year’s day. She is already back into the 12 hour to 14 hour day routine. I, on the other hand, get to decide if I need to get up with her. After all, what is on my agenda for the day? A shower? Wow, tough job, that one, especially with the new mucking gloves to protect the skin graft site. Get dressed? I need to figure out who I’m seeing today and what the appropriate dress code should be. Breakfast? Toast a gluten free waffle, drink a can of Ensure with Fibre, take my meds and supplements, drink a glass of juice, skim the paper. What’s next? A doctor’s appointment? A physio appointment? A nap? What is there to read? Should I watch television?

If I actually do get up with Gail, I half listen to that fool, Ron Wilson, on CBC Radio One in Edmonton. Most of the programming is good, except when it actually involves him; I find his manner, his condescension, his gotta-have-something-to-say, know-it-all attitude annoying. Weather and traffic? I don’t have to deal with them most days. But I feel for the folks who have to hustle off to work, people like the team I work (or worked?) with. Can I, should I be making a contribution? If I can read, watch television, and enter things into this blog, isn’t there more that I can be doing to contribute to our home life, or to the team in my work life?

But no, I’m supposed to be ‘healing’. When does it transition from ‘healing’ to ‘goofing off’?

And damn, what an inconvenience for all the people I interact with! Getting sick now is just so badly timed for Gail, for my workmates, for my family and friends. Plans are postponed, arrangements gone awry, commitments compromised.

Ugly, Weak and Damaged;
As I prepare for my day, I do the normal things. I shave, I brush my teeth, I shower. And as I do these simple things I am reminded throughout the process of the depth of the damage to my body. When I shave, I pass an electric razor over my still swollen neck, over areas that I still can’t feel, pushing deep into the scars to get the errant hairs. I need to run my fingers over the areas to touch, to sense, to assess how well the razor has done. The swelling is uneven, lumpy and makes me look so much older and out of shape that I truly am, or was. My beard has grown over the scar on my chin, but that bit of camouflage is temporary. I will need to shave once the radiation therapy starts.

When I brush my teeth, I am reminded of the tooth they needed to take out of my smile. My tongue still does not cooperate. When I spit, the material is thick, and stringy, and my lack of control over my tongue and part of my lower lip makes it messy clearing my mouth.

When I slip out of my robe to prepare for the shower, I am still startled by the full impact of the neck dissection. There are additional scars that run from my lower right jaw down into the front of my right shoulder. I can see suture marks and some discolourations. And my shoulder, itself pivots forward. I try to haul it back into line with the left shoulder, but its tough, and doesn’t want to settle into place. I can see the deterioration or slumping in the trapezoids. And it aches. (Even now, as I type this, my shoulder constantly reminds me to keep it moving, that I shouldn’t be sitting still, putting this much time in on one position, one activity.)

I pull on the mucking glove to protect the skin graft on my left arm, and fumble with a roll of tape to seal the glove, invariably glancing down at the place on my left thigh that they took the skin from to rebuild the left arm. And I feel the muscles wasting in my bicep, knowing that they are losing their tone, as is so much of my musculature, even as I wash my hair, my body, and fight with the towel, drying.

The annoying tugs in my shoulder as I dress, the softening of my belly that my jeans point out, all this contributes to the sense of unease I have with my body and how I present to the world.

I’m not supposed to lift anything. I’m not even supposed to shovel the sidewalk. We go grocery shopping, or any shopping, and Gail insists, vehemently, that she will carry everything. I had to get John to replace some burned out fluorescent tubes ’cause I can’t keep my arm above my shoulder long enough to do the job. There are maintenance things that need doing that will either have to wait, or that I will have to hire someone to do for me. I have to let people rummage through my tools, putting things back where they don’t belong. I didn’t even get asked to help with the Christmas tree. I’m just supposed to sit and relax, or nap. I hate having to be done for, rather than doing it myself.

Most of my frustration stems from the speed with which I am healing. Ya, I know that the doctors say I am ahead of the curve on this type of surgery, but I still want my taste back now, and the full functionality of my tongue now, and this damn shoulder to stop plaguing me now! I want my lower lip to stop being an irritant. I want to be in radiation and chemo therapy now, and I don’t want the therapies to stop me from going to the Pink Elephant ITIL conference in Vegas during February. I want to be able to sit for hours at my computer without discomfort. I don’t want to constantly need to lie down, take a nap or just get the weight off my shoulder. My various discomforts feed my own, natural procrastination. I should be reading, writing, drawing, painting, anything but feeling this overwhelming need to veg out in front of the television. And I hate that there’s nothing good on daytime television!

I’m sick. I hate that. I have every intention of getting better. I just hate that I’m sick to begin with. And it compounds into silly things like the fact that I’ve got this time away from work but I get tired too easily to do anything really constructive with it.

I don’t enjoy having to eat all the time, or being prodded to eat, to fatten up, to gain weight before the chemo and radiation therapy slam my body into the mat. I can’t really taste everything properly yet (although its getting so much better!) so my desire to eat isn’t there either.

I’m annoyed with myself that I can’t get beat the inertia and get out to exercise.

I was very surprised by the hoopla over the ‘clear margins’. I never expected anything less than that. And why wouldn’t I be talking two days after surgery, with a tracheotomy tube in? I will not be that sick with the chemo, and the radiation will not cause me to have trouble swallowing. We will get this damned thing out of my system with the first pass, and it will not come back. Period. End of statement.

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