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Irwin Barker passed away on June 21, 2010, three years after the doctors gave him one year to live.  I mentioned Irwin in my last blog.  I had met Irwin and his wonderful wife Joanna only once and we exchanged a number of emails in an attempt to get the four of us together for dinner.  Unfortunately, due to his hospitalization, my surgery and his travels, we were unable to do that.  And while I regret that we didn’t have the time to get to know each other better, he nonetheless had a profound impact on me.

There are so many cancer stories out there, because every one is different yet we all experience many of the same emotions and situations.  Throughout my own cancer journey, I have benefited greatly from hearing these stories and that is why I use my own story and others to illustrate the profound emotional impact of cancer on all those who have to deal with it.  Irwin’s story is important for a number of reasons.  First of all, he survived much longer than the doctors’ told him he would, which is a testament to the strength of his character, the support of his family and friends, and the wonderful attitude he had towards life.  It is a lesson to all of us not to take our doctor’s prognosis as fact.  It is, after all, based on the average experience of others and those others aren’t us.  For everyone fighting cancer, particularly if it is terminal, there is hope in Irwin’s story and the stories of so many others who have beaten the odds, often for many, many years.

Perhaps as important is the lessen that Irwin taught me, even though we didn’t know each other that well.  As a successful stand up comedian and comedy writer, humour was a huge part of Irwin’s life and he used humour to help him deal with a diagnosis that would cripple many of us.  Since I met him, I have kept this in mind and try to find the humour in the many things that life brings me.  It’s not always easy and not always obvious, but it’s there if you look.  I highly recommend this to anyone dealing with cancer or any other crappy curve that life throws you.

When we met, he was interested in my book. I gave him a copy and hope he had the time to read it and that he found something in it that helped him.  He wanted to write a book himself about using humour to deal with cancer, which would have been a wonderful gift.  I hope that he was able to get some of his thoughts down and that Joanna finds a way to share it with the world.

You can find out more about Irwin on his website at iriwnbarker.com.  I found a YouTube recording of a radio spot from the day he passed which contained a clip from one of his stand up routines and a chat with one of his close friends who talked about his family and friends being wit him in the hospital over his last few days.  It was sad, funny and poignant and touched me personally in a number of ways.

Irwin, thank you for all you’ve given to the world.  Wherever you are, keep on laughing!

Posted by Doug

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Hi all.  I’m three weeks post surgery and the pain is lessening every day while my hopes for the future increase. Frankly, with the relative speed of growth of my tumour and my PSA, I was beginning to worry about what my next couple of years could look like in terms of further spread, more pain and, ultimately the end of the line.  It’s something that’s never far from your mind when you have an advanced cancer that is incurable.  I read a great post somewhere about this.  It said that once you have been told that you have a terminal illness, you become part of a group of similar people who can never look at things the same again, and you can never go back.

For me, I think my recent surgery has at least bought me a couple more years so I find myself thinking in longer time frames.  On the other hand, my new friend Irwin Barker was told he had a year to live about two and a half years ago.  More recently a young friend of my daughter was diagnosed with cancer and told he might have less than a year to live.  When I hear these stories, it makes me think how lucky I am to be alive almost eight years after my initial diagnosis and two since it metastasized.  But luck is all relative.

I have had a good life and am optimistic about having many more good years.  I can’t imagine facing this disease before I’d had a chance to have a life.  I wonder what I would do differently if I was told today that I had only another year.  I am very happy about my current situation but I find I still have difficulty with the uncertainty of it all.  I know what the numbers say, but my disease isn’t behaving according to the norm so I have every right to be optimistic, yet I can’t just put it aside completely.  I’m not sure that makes sense to anyone who isn’t part of this “group”.  Perhaps you think I’m just whining. Maybe your right.

Anyway, I intend to push forward and live my life to the fullest, regardless of how much more time I have.  My hat is off to Irwin who uses humour to get through it all.  And to Dave Noble, let me say that I admire your strength and your attitude.  I wish you well my young friend.

In the final analysis, all we can do is fight this damn disease as best we can, smile as much as we can and say screw the numbers!

Posted by Doug

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I’ve had a rough couple of weeks.  It’s normal, and expected perhaps, to have some bad days when you’re fighting cancer, but sometimes those days stretch out a lot.  The ongoing battle with cancer always offers up surprises now and then.  It’s not always visible to those on the outside, but it seems there is always something new.

I’ve been on various types of morphine now for over a year and a half to help me manage the pain of my metastasis, which is actually quite bad.  Over this period, the dosage has increased as I’ve built up a tolerance.  As I’ve tried different types, I’ve had to deal with various side effects. They all cause constipation so that has just become a fact of life for me, but some of them make me too tired to do anything and others have caused me to be highly anxious or even angry.  The drug I am on now is called Fentanyl, which goes on as a patch every three days.  It’s very convenient, for one thing, but has also provided exceptionally good pain control for me over the past many months. Unfortunately (as I found out) it is having some new side effects due to prolonged use (of it or of all the morphines).  I developed difficulty breathing, that sense of not getting enough oxygen in, plus frequent bouts of high anxiety.  It was the combination of the two that prevented me from having the MRI a mentioned two posts ago (see Sometimes it gets to be too much).

I immediately started to reduce the size of the patch (and thereby the dosage), making up the difference with breakthrough (fast acting) morphine pills.  Within a couple of days, my breathing returned to normal and my level of anxiety improved considerably, such that I was able to take that MRI successfully this time.  But I’m not out of the woods yet.  I still feel the anxiety once in a while as well as feeling pretty down about things in general and my situation in particular.  I think about dying before my time and it smothers me with feelings of profound sadness.  Up to now this has been an abstract thing, but it feels more real to me now and the thought of leaving family, friends and life behind is crushing.  Perhaps I’m finally starting to deal with it.  Perhaps these thoughts have been there all along and the anxiety is scraping away the protective covering to expose them.  Perhaps the fact that my PSA is rising to ever higher levels and that I can feel my back pain more are contributing to this.  Whatever.  It’s there. It’s real.  And I need to deal with it.

In the short term, I’m throwing myself back into my work and into my other volunteer activities.  This will take my mind of the bad stuff and let me focus on putting some good energy out to the Universe, which I’m hoping will come back to me in kind.

Then again, maybe I need some more drugs!

Sighhhhhhhhh

Posted by Doug

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Wow!  What a great experience I had being interviewed on the Andy Barrie show yesterday.  It was my first time on the radio but Andy has a way of making you feel very comfortable.  It was like having a conversation with an old friend.

While we only had a short time to chat, Andy raised an issue we could have discussed for an hour.  “When you die,” he asked, “will you feel that you’ve lost the battle with cancer?”  I responded that, “If you can look back on your life and feel that you’ve lived a good life, that you’ve helped people, that they will remember you, then perhaps you can say you’ve won the battle if not the war.”  I must admit that I do think of that.  When you are faced with a terminal illness, you can’t help but wonder how you’ll feel at the end.  Fear, yes -  Sadness – yes.  Anger – maybe.  I feel that I am helping people with my writing and speaking and the work that I do, and I will continue to do this for as long as I can.  Perhaps this is how I “fight the battle” and, for me, it works.

We all will die sometime and leave behind a lifetime of memories and at least another lifetime of regrets for what we could have accomplished if we had more time.  But we can’t do it all and, unless you do something to get yourself in the history books, your existence won’t even be a distant memory in a hundred years.  Thinking about that can drive you crazy and perhaps even to despair, but most people don’t think about it.  I did and I had to come to grips with it in order to move on.

It is what we do with our lives every minute of every day that defines who we are and if we’ve done some good and helped some others along the way, then we can look back with the confidence that we’ve won a few battles and, if we’re really lucky, we can feel that we’ve won the war.

This is what I aspire to.

Thanks Andy.  Check out this link: http://www.cbc.ca/toronto/features/bad-news/excerpt.html

Posted by Doug

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Life can be such a fleeting thing. When you have a terminal or incurable disease, life and death are always on your mind, sometimes in the forefront and sometimes lying in waiting ….never completely gone.  The uncertainty of how and when is haunting and everyone deals with it differently.  It is on my mind all the time now but I feel infinitely blessed to have time to plan, to live and to love.

Last Wednesday, I was hit head-on by another driver who simply drifted into my lane on a little used industrial side street.  My car was totaled and I ended up strapped to a board in the back of an ambulance.  With the overcrowding in hospitals these days, I spent quite a while on that board and had time to think …. time to think about how I could have been killed.  Here I am, every day, worrying about how many years I have left, and I could have lost it all in a split second of random carelessness by a stranger.  Cancer patients often hear the expression, “Hey, we’re all going to die sometime.  I could get hit by a car tomorrow!”.  I hate hearing this even though it is well-intentioned.  It trivializes the fact that I know that car (the one with my name on it) is just around the corner and it’s going to be more than a fender-bender.  But you can see the irony in all of this.  I consider myself very lucky.

Having said that, I now have to deal with more pain, more medications, and a lot more stress that I could definitely do without.  And the time I now have to spend dealing with the aftermath comes out of my shortened balance of life.  Having cancer or getting hit head-on are both highly traumatic events.  Having both is just not fair.  The other driver was not injured in any way and has been charged, but he has no way of knowing (unless he Googles my name) the impact he has had on me beyond needing a new car.  On the off chance he does Google me and finds this post, I say, “Thanks a lot, buddy.  My own body wants to kill me and it doesn’t need any help from you.”

I just want to find some normalcy in my life for even just a couple of months.  A nice long stretch where I don’t have to worry about new tests, bad results, or more uncertainty.  But I suppose it isn’t meant to be.  I got hit by a car…. but I dodged the bullet!  I’m still here and I still have time to live and to love.

Keep your eyes on the road!

Posted by Doug

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