March 18, 2012

Pain, Pain, Pain

This is a somewhat different post today as I have a specific audience!  About a year ago, I was privileged to participate on a pain panel during Pain Week at the University of Toronto.  I was invited again this year, but as my health deteriorates, I really can't participate in the same way so we decided to do it differently.  I have several questions to address and the students will be introduced to this blog for the answers.  What a great idea!  I do hope the students find both my answers and my blog of interest as they pursue their various medical careers and also hope my regular readers find it interesting.  Consider it an in-depth Personal Update.  Here we go.
 
Question 1: “Can you please briefly tell us where your current pain is and what it feels like?”
 

I have Advanced Metastatic Prostate Cancer which has spread to my bones.  It is most extensive in my sacrum, where it has spread throughout the bone and the Sacral vertebrae, extending into the pelvis as well.  Further up my spine, I have lesions on my Lumbar and Thoracic vertebrae, my ribs on both sides, my shoulder and even one on my skull.  The most intense pain is in my lower back, sacrum and pelvis area which makes it very difficult to sit in most types of furniture.  The pain comes and goes and is worse when I'm out and about and causing movement.  It is particularly acute in the left sacroiliac joint.  A few weeks ago, I had a severe attack of pain which my medications couldn't touch such that I was throwing up from the pain.  I ended up in the emergency department as my doctor thought I might have broken my back and damaged the spinal column.  Thankfully this wasn't the case, but I had an MRI that showed the extensiveness of the spread and provided some insight on why I have the pain where I do. 
 
Question 2: “What is the most difficult issue for you related to this pain?”
 
The most difficult issue I face is the fact that my disease is terminal and I have been given a limited time to live.  The cancer has spread extensively in my system already and continues to do so.  My pain, and the tremendous fatigue that accompanies it, are constant reminders that I am going to die a long time before I should.  Since I can't work anymore, I have a lot of time to think about this and my life has resolved around trying to make the most of the time I have left while I prepare for the inevitable.  It's tough!  It has also had a significant impact on my day-to-day life as I make do with special chairs and cushions so that I can sit for extended periods of time and use canes and walkers to provide stability when I'm on the move. 
 
Question 3: “ What has helped most with your pain?”

I have been very pleased with the approach to pain management that I have experienced over the past almost 5 years dealing with metastatic pain.  For most of that time, I have been under the direct care of the Pain Clinic at Princess Margaret Hospital where we have been able to try one medication after the other in search of something that controls the pain without debilitating side effects.  This is particularly important to me as I have an extreme sensitivity to most medications and I have needed the regular monitoring that the clinic provides.
 
More recently, I have transferred to a Palliative Care program, given my terminal prognosis.  The focus of this program is very much on trying to get me on an even keel with minimum discomfort until the end.  To do this, the team (doctors, nurses and other health professionals) employ a broad range of strategies including aggressive and innovative use of any medications available to find something that works for the individual.  Over the past couple of weeks we have, in fact, found a drug combination that has my pain under control for the first time in almost five years!  I am ecstatic about this, however it has come at a price as I now have to deal with significant side effects including disrupted sleep patterns (which is rough given my fatigue levels), painful skin rashes, thrush mouth and leg cramps.  But we're working on this now.  It's part of the program and I am thrilled at the degree of individual attention I am receiving from an exceptionally caring palliative care team.
 
Do you have a message for students about improving pain management? 
  
The main message for students is that you need to approach pain management from a very personal point of view.  My experience has taught me that the perception of pain is very specific to the individual and there is no "standard pain experience".  For example, some bone metastases can hurt one person but not another and some individual lesions can hurt while others on the same bone don't.  There's no obvious reason for this - it just is.  The only important fact for you to know is that it hurts and needs to be treated.  Also, there is no "standard" response to specific pain medications beyond the fact that they treat pain.  So some medications will work better for some people than others and some very unusual combinations of medications work amazingly well.  You have to be willing and able to experiment and learn.  But do it in partnership with your patient.  No one knows their pain or their response better.
 

Well, that's it for now.  I hope the students have found this useful and I thank my loyal readers for allowing me to piggyback on my regular topic.  My pain has and continues to be a significant part of my journey and I know I'm not finished with it yet.

If you are interested in my continuing story, you can follow me directly at dyingdigitally.com as well as on Facebook (Doug Gosling) and via Twitter (@douggosling).
 

38 comments:

lisa s roberts said...

Doug:

I do hope the students that this post is designed for not only read this post, but all of the others you have shared. And I hope they understand the value of sharing it all with peers and others. What an incredible teacher you are!

Thank you so much for sharing your experience and gifts.

Lisa

Anonymous said...

Hi Doug,
I'm a student in the midst of Pain Week currently at U of T. I just wanted to leave a quick thank-you for your contribution on Monday, even if you were not able to physically be there. You gave us some great insight in to cancer pain and the impact it's had on your life, which in the health care setting is something that unfortunately becomes overlooked amongst the focus on curative therapies. I also personally appreciate this blog - my own father has recently been diagnosed with cancer but even as his main caregiver, it's hard to know what he might be thinking as a patient, a man in his 50s, as a husband of 27 years and as a father of two girls. While not exactly the same, reading your story has given me a great deal to think about and to address with him. Thank you, and I do wish the best for you and your family.

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