talkingaboutcancer.com

I just left a chat room at caringvoices.ca.  The focus was to be about my book and about engaging people in a discussion about the emotional impact of cancer.  That, of course, is the overall theme of this blog, but I now realize that we have neglected the very important area of Intimacy.

Cancer can deprive women of their breasts and men and women of the ability to have sex.  With that goes intimacy and, in the worst cases, your marriage.  And when a marriage breaks down, the cancer patient loses the one person who should be their strongest ally.  My wife, Dianne and I have struggled with this since I was first treated for Prostate Cancer almost 8 years ago.  We have managed to keep our relationship strong and mutually supportive through some of the worst times.  We are stronger for it and I am so much better off having her beside me.  But intimacy has proved elusive and while we often talk about it, we probably don’t fight hard enough to get it back.  Maybe its because we don’t know how to get it back, or what to do to replace what we’ve lost.  We have a great relationship and we are the strongest cancer couple we know, but I think we are short-changing ourselves and we need to do something about it.

We would welcome any thoughts or ideas from our friends and followers of this blog.

More on this later.

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I had a strange experience the other day.  It surprised me and, I admit, scared me a bit.

I was scheduled for another MRI to see if we could find a new metastasis that might explain the pain in my back.  This is a normal thing for anyone fighting a disease that is progressing as mine is.  I’d already had a bone scan and a triple CT scan so this was the last one.  I was looking forward to it because I have a need to see something so I can fight it, even if I can’t cure it (something for another post).  During that day, I was feeling a bit anxious but it was a general anxiety rather than anything specific related to the scan.  But I only got as far as laying down on the MRI bed when I realized that I just couldn’t do it.  I knew in my heart that if they locked down that box around my head and pushed me into that tube, I would freak out.  So I politely told the technician what was happening, apologized and walked out.  As I walked up to Dianne, who had come down to support me, I was overcome by a wave of pure, raw emotion and I could see it wash over Dianne as well.  I felt like crying and she looked so… confused.  She couldn’t believe it and I couldn’t explain it.  We left the hospital in a state of shock.

Later, we were able to regroup with our good friend Gayla and analyzed what had happened.  It was simple really. I’m just overwhelmed.  Since before Christmas when my PSA started rising quickly, I have been obsessing over what is happening to me and pushing hard to find some more cancer so I can beat up on it.  I guess that’s normal, but it was quickly becoming too much.  I was already dealing with some severe drug side effects and a bunch of other things and it was all just too much. 

So I’ve had a bad couple of weeks.  It happens.  This whole thing sucks and some days are worse than others.  It’s the gift of cancer.  The kind that, unfortunately, keeps on giving.

I told myself to give it a rest and, for once, I think I’ll take my own advice before it gets any worse.

And it’s so hard on Dianne.   I’m sorry, honey.

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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

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Happy Birthday, Dad. Well, it would be his 94th, but he passed away two years ago April. I think of him often, because he is the closest person to me to have died. Also because I was with him near the end and had a chance to say goodbye. While he did have bladder cancer when he died, he died of old age. His body wore down from many years of just plain living. He was blessed to have the years he did and we were blessed to have him for such a long time.

I didn’t cry when my dad died and, while I felt a profound loss, I knew he had a good life and that he was ready to go. As I wrestle with my own sense of mortality, I concern myself with the time I have left, maybe to a fault. But that’s where cancer takes you. My own body has turned against me and I know I won’t have the same time that my father did. But his death and the memory of his life help me to look back on my own life with a bit more care.

Two years ago, family and friends gathered to celebrate the life of a good man. All of us need to celebrate the good in our own lives every day. It helps us to deal with the bad stuff.

My dad did not live a remarkable life, but he had a good life. Regardless of how much time we are allowed on this earth, do we really need anything more?

I do miss you, Dad.

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Andy Barrie’s Morning Show on CBC radio 99.1 (Toronto) is doing a 7-part series on Princess Margaret Hospital Feb. 1-4 and 8-11.  I will be interviewed along with Dr. Mary Gospodarowicz, medical head of PMH, on Feb. 11.  Andy lost his wife Mary to cancer in February last year.  The Wolf at my Door will be featured on the show’s website shortly. Our hearts go out to Andy on this sad anniversary.

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I consider myself to be a lucky man in many ways.  Although this may seem strange coming from someone with cancer, I’m sure you can appreciate how important it is to look at the whole of your life, to see the good that has come your way in spite of the disease.  When I look back on my life, I see times that I’d rather forget but, for the most part, I see lots of good times and many blessings that have come my way.  These are the things we all need to focus on.

One of the best things that ever happened to me was meeting my dear wife, Dianne.  I’ve written about her many times before, but there are never enough words to truly express what a wonderful person she is and how much she means to me.  As we face the greatest challenge of our life together, the relationship we have has grown ever stronger.  But its complicated.  I love her so much, and rely on her love and support so much, that I have become completely dependent upon her.  I rely completely on the fact that she is always there for me and that, no matter what happens to me, she will always be there to love me and support me.  I consider myself to be a very strong person overall, but I don’t mind admitting that a single cross look or disapproving glance turns me to mush.  It makes it tough sometimes to have a rationale conversation about important things, or even to disagree on something.  Believe me, there are lots of difficult decisions to make and sometimes even simple ones that require some objectivity.  But its hard for me to be objective because I don’t ever want to disagree or do anything to make her think less of me.  Its probably not very healthy, but that’s the way it is.  I’m just a big baby after all.

Sometime in February, I will be interviewed for a 7-part series on PMH hosted by Andy Barrie of CBC radio.  This is a wonderful opportunity and I’m always glad to help out.  In doing a little research of my own, I came across the fact that Andy’s wife Mary passed away from cancer just last year.  Married for some 40 years, she died with Andy and their daughter at her side.  I can’t begin to tell you how sad that made me feel when I read about it, but I also smiled at realizing how lucky she was to have the support of someone like Andy with her.  This says it all.

I’m writing this to emphasize how important it is to have someone you love beside you when dealing with a disease like cancer.  It’s not something you should ever take for granted.  Not everyone has this precious gift, but I have my Dianne.

For better or for worse I know she will always be by my side.

You can’t get much luckier than that.

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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!

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Hi everyone.  As you no doubt noticed, we pretty much shut down over the Christmas holidays.  I did this on purpose as I really wanted (needed) to focus on having an incredible Christmas and some complete down time.  In addition, I wanted to focus on launching my new book!  I’m pleased to say that I was successful on all fronts.

On Dec. 20, we held an “exclusive” family and friends book launch for The Wolf at my Door.  Given the time of year, I was very pleased to have about 75 people attend.  My brother and good friend Gayla surprised we with humbling and heartfelt introductions and then I had a chance to read excerpts from the book.  It was an amazing day and incredibly emotional for everyone who attended.  Many people read the book over the next couple of days and I have received incredible feedback and requests for more copies.  Thank you to everyone who attended, with a special thanks to my daughter Caralia who arranged the event and to Meghan and Dayna who also helped.

Christmas itself was wonderful.  It can be a very difficult time for someone with cancer as the disease becomes a giant elephant in the room and can often make it difficult to really enjoy the spirit of the holidays.  When I was first diagnosed seven years ago, I didn’t even want to have Christmas as I didn’t think we had anything to celebrate.  But this year, we surrounded ourselves with family ( including friends we now consider as family) and had a wonderful time.  Having my nephew’s two-year old son Levi here provided that wide-eyed child component and my eighty-nine year old mother provided a link to a lifetime off Christmas memories.  It was the best Christmas I’ve had for many years and was very important to me as I worry more and more about what the future brings.

Unfortunately, as all cancer patients know, you can never completely get away from your body’s assault on itself.  Leading up to the book launch, my PSA started climbing quickly, evidence the cancer was actively spreading.  The day after the launch, I had another test and found it had jumped way past what it was when I was first diagnosed and we have been unable to pinpoint where it is growing, which is cause for much anxiety.  In the meantime, the pain in my back is increasing.  I tried another type of hormone in a bid to slow things down, but the side effects drove me off that after only a week.

While this was all going on in the background, I pushed it away and did my best to enjoy all the good things that were going on around me, blessed with the support of my wonderful wife Dianne who continues to give me her strength.

So it’s a new year now and I am back to work and trying to figure out how to deal with an advancing cancer that will limit the time I have left.  I wish all of you the very best in the new year and ask that you throw some good wishes my way.

Good health and much happiness to you all.

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Just when I thought I could relax a bit and enjoy the Christmas season, I get more bad news. For every cancer patient, this can happen at the worst of times. But for a disease that seems to attack indiscriminately, there’s no reason to expect it to honor holidays.

This time it wasn’t a complete surprise as I have been experiencing new pain in my lower right back which has been getting steadily worse almost every day.  Initial scans had shown nothing, but my PSA was up again so I knew something was happening.  When I found out last week that it had quadrupled in 4 weeks, it confirmed that the cancer was actively spreading again (and growing tumours or lesions).  It seems that once it starts up, it moves very fast.  I can only try to slow it down with hormones, but I can’t use the same ones as before (which rendered me bed-ridden) so it will be “sub-optimal treatment” as my oncologist says.

So this Christmas will mix friends, family and fun with scans, doctors and meds.   These kinds of choices are tough enough but they can certainly cast a pall over a happy season.  So that’s my challenge – to deal with all of this without letting it ruin my holiday.  We have a wonderful Christmas season planned with lots of family and friends and, while my situation will be on everyone’s minds (because they love and care for me), I’m not going to let it take away from their enjoyment or mine.

The pain and the side effects will be there like uninvited guests.  They’re hard to ignore, but I will do my best to do just that.

So let’s just remember all of our friends and loved ones who have had to deal with this dreadful disease, especially the ones we have lost, and enjoy all of the life and happiness that this special time brings. We must always remember that we are making memories that will help to carry us through the rough times to come.

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Well, I finally stumped my psychologist!  Over the years, the support and advice I have received from him has been life-enhancing even if not exactly life-saving. It is characteristic of cancer that your life is full of ups and downs, highs and lows, and times when you are lost in the uncertainty of the disease. There are times when you are thrilled at the results of a simple blood test because it tells you that something is working. And there are times when the news is so bad that you glimpse the darkest corners of despair. This is what it is to live with cancer and, if you are to get through the days with dignity and even a little happiness, you need help. While the love and support of your spouse and family can do a lot (I would be lost without mine), you need the objective help of a professional to help you deal with the difficult questions and to ask the questions you may be too afraid to ask yourself. I have been blessed to have someone like Andrew to fill this role for me over the past seven years. The advice he has given me has saved my soul. I talk a lot about this in my book, The Wolf at my Door.

I have been seeing him regularly since my recurrence and have always left his office with something, some little tidbit that shone a light into some dark corner  But the other day, I gave him little to work with, primarily since I have been following his advice all along. I do not obsess over the terminal nature of my illness (given the current state of science) but focus on trying to make the most of today.  I do not spend much time feeling sorry for myself because I know it won’t get me anywhere. I do not sit around moping about my physical issues but do whatever I can feasibly do and unabashedly ask for help when I need it.  I do not despair over a shortened lifespan, but work hard at my job and at making a difference in meaningful ways. I neither seek nor avoid sympathy, but accept well-intentioned wishes from others.

In summary, I’m doing the best I can with an overall positive and constructive attitude. What more or what else can I do? So while there is really nothing more that Andrew can do for me right now, it feels very good to know that I’m doing the right things. But I’m not letting go of him yet. As the saying goes, I’ve got miles to go before I sleep.

If you have cancer, do not be embarrassed to seek professional help. In fact, if you don’t think you need it, you probably do.

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