Saturday, 27 June 2015

My Cancer, Getting Ahead of my Pain

Only a day or two ago I thought I might take a few moments to write about a quality of life that chemo provides - an abatement of symptoms. Those days were the best I've felt since my chemo began.  But, I didn't get around to writing about my first lunch out in over 3 months with my family on Fathers' Day, nor that a few days later I enjoyed lunch on a nearby patio with friends.  I didn't mention the nursing class that invited me to speak at the U on Monday night, that I accepted and spoke for 90 minutes (no small feat for me to be on my feet. )

BUT...This morning I woke up at a solid 8 on a pain scale with 10 being the highest. It snuck up on me in the night. Sitting up in bed this morning was an accomplishment just shy of Herculean.  It felt like a bird of prey was snacking on my liver, making my struggle more Promethean than Herculean, in hindsight. 

One of the concepts I have had trouble wrapping my brain around is that of pain. I, like any mature adult, have come to accept that pain is a part of life.  An 80s fitness ad that featured the famous tagline "no pain, no gain" has insinuated itself as common wisdom.  For building biceps, it's true.  For living with a life threatening illness, not so much. 

Getting ahead of pain, for a person living with a terminal disease, means understanding that pain is not OK, not part of the process, not to be expected or accepted, and most of the time it can be mitigated.   

One need not accept pain as a necessary stage in the healing, or in my case, the management of a rapidly spreading and insidious disease.  I don't have to live with pain, if it can be avoided. Most (but unfortunately not all) pain can be controlled.

For me, getting ahead of pain means finding the sweet spot where between treatment and prescriptions one lives his life with as clear a mind as possible, for as long as possible, without avoidable suffering. Living with pain is not "toughing it out". Working through the pain is, in a way, giving in to personal pride and notions that just don't apply to a cancerous tumour that can't be beat, a loving family who'd like as much quality time with me as they can reasonably get, and the goals of my treatment. It is not wimping out or surrendering to take as much, but only as many meds as one needs to keep pain and discomfort at bay, before it begins.  Beating back the agony after it sets in takes a long time and exponentially more drugs.  It is exhausting.  Of what quality is time with my family if I literally can't speak because I'm in pain, or can't stay awake during the day because I'm exhausted after a pain filled, sleepless night?

And so most of the time I am popping pain pills regularly on a schedule even when I am not in pain, to prevent, or "get ahead" of the pain I would experience were I not proactively addressing it. 

So this damned pain which I didn't see coming has wiped me out for today and hopefully only today. I've had to cancel a coffee meeting with a few deacon friends, and Mass this evening looks iffy.   And so I rest and sleep, and pop some pills knowing tomorrow is a new day. 

I am grateful to the nurses and doctors of Hospice of Windsor, the Windsor Cancer Centre and St Elizabeth's home care for walking with me this far and helping me understand this part of the journey. I am neither the brightest student nor the easiest patient. 

Thursday, 4 June 2015

My Cancer, My Chemo...Not Complaining, Just Saying

Bear with me, this is new for me.  I'm going to try and write about the negative side-effects of chemo, while experiencing them, and while at the same time conveying my overwhelmingly positive attitude on what is mostly a good day.  In other words, I'm going to try and tackle a delicate subject in a sensitive and thoughtful manner, while at the same time trying to stay focused and not distracted by said negative side-effects.  This blog post is a month to two overdue but that was the first to go with the first infusion of chemo - my ability to concentrate.

Clinging To...
I've made some pretty strong statements about false hope, flim-flam, alternative medicines...anything that sucks the money out of the wallets of the vulnerable, that dangles the unbelievable in front of the susceptible, against wasted optimism.  (Some would argue optimism is never wasted, I disagree but will concede that if not wasted, it is sometimes misplaced.)

A couple of weeks ago in the worst period post-chemo yet, I did a little clinging myself.  In my post chemo recovery I experience a nagging and persistent baseline nausea.  Look, even in my darkest misery thus far, I am keenly aware that others, most others, are suffering chemo effects far worse than I.  Even a couple of trips to Urgent Care in the last couple of months, once by ambulance, have only served to remind me that there are others, many others, in far worse condition.

And yet this ongoing, never ceasing nausea can occasionally get away from me, and on this occasion it led to a closer familiarisation with the family commode, one that I had desperately wanted to avoid.  I have a good friend who refers to that as the "childhood fear of vomiting."  Yup, not gonna deny it.

As I experienced the worst of it, and my spirit took a temporary leave of my wretched body to confer with my psyche, I began to wonder what was the point of all this?  Why put myself through such misery for a fatal disease that will not be cured by treatment?  The chemo is only to control the symptoms.

And it occurred to me that even a false hope, a faint chance of a cure if I believed, might be enough to make the next 90 seconds, if not bearable, then less insufferable.   And the next 90 seconds after that, and the next several minutes after that.  I understood. I needed something on which to focus; on which to cling.  I understood those who desperately embrace that which, given different circumstances, they might reject or at least retain some sense of caution. 

And while I don't begrudge those who take that route as a means, these are the short bursts of helplessness and discomfort and yes, pain that I knew were ahead of me when the verdict was rendered.  What was that line from Poltergeist?  "they're here...."

I don't know what the answer is.  When the pain grows more frequent or perhaps less manageable, what will be my focus point?  I just have to get through this so....  I have to hang on so we can...  So what?  I don't know.  But I do know this.

I do not travel this path alone.