August 23, 2011

Thanks Jack!

We have lost a great man. Jack Layton, long-time politician, new surprise Leader of the Official Opposition, gentle man and friend to many has died of an unspecified cancer, just after being treated for prostate cancer.

It made me very sad. I never met the man personally but, like many, I felt like I knew him. Wen I first heard that he had prostate cancer, I immediately felt the same bond I feel with everyone who shares this disease. We joke about being welcomed into the club that no one wants to join. He is gone now, but there are lessons in every premature death. What do we thank Jack for, other than his tremendous contribution to Canada?

In his final letter to Canadians which he wrote two days before his death, he addressed part of it to me (and all other cancer patients). After his initial thank you's and admission that he wasn't going to make it, he wrote:

To other Canadians who are on journeys to defeat cancer and live your lives, I say this: please don't be discouraged that my own journey hasn't gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.

This is a great message of hope and one that all people with cancer or other chronic or terminal disease needs to take to heart. It's so important for us to have hope because the moment you lose hope is the moment you begin to die. As I've commented in other posts, even if you decide to stop treatment (based on educated reasoning) you are not giving up hope. You have just decided to try to enjoy your remaining time. While my disease is incurable today, it may not be in a few years. Even though it might turn out to be too late for me, I will never give up hope. And while my future may be limited, I can look to the future for Dianne and my kids and hope that their lives are as rich as mine has been.

Much has already been written about Jack as befitting a man of his stature and accomplishments and I am pleased that much of it is about Jack the person, rather than just Jack the politician. Interestingly, one article I read talked about the inappropriate use of terms like "losing the battle", "fighting the cancer". I've posted about this too, but it's refreshing to see the debate starting in the press, even in a small way. As my friend and well-known oncologist Robert Buckman said in the article, "The idea that he was waging a battle which he lost demeans him." There is an unintended implication that those who "lose the battle" may not have "fought" hard enough. Similarly, calling someone a "survivor" may suggest that they "fought harder" than someone who dies (if anything, it may be be the reverse). Some may think this is just being overly sensitive, but you need to see it from the perspective of the person with the disease.

One of the comments made in response to this article was from a man who had cancer when he was 17. He said, "I can't say I did much myself to fight it. A couple good oncologists and some pretty harsh chemicals fought the cancer, I just showed up and was along for the ride..." And farther on, "I didn't survive cancer. I survived the treatments, and they made my cancer go away."

I haven't stopped "fighting" and I don't think of myself as a "survivor". That's just me, but perhaps we should be a little more thoughtful with inspirational leaders like Jack.

A final point I want to make concerns the fact that he wouldn't tell us what his second cancer was.... the one that killed him. Perhaps he thought that by announcing what it was, people might become convinced he wasn't going to make it. Because of this, there were many people who wouldn't have had a chance to have "that talk" which I've always said is extremely important. But we must recognize the position Jack was in. As a public figure, the press would have focused on the disease and held an unsolicited, unappreciated and inappropriate "death watch". They would would have had him dead sooner than he was. Unfortunately, this would have overshadowed his accomplishments and the positive coverage he and his political party continued to have throughout.

There is no conflict here. As I have stressed in previous posts, the decision of who to tell and when should always be made by the person and not by someone else. Jack had to think about the impact this would have on his party, to which he had dedicated his life. And I am sure that those he really wanted to know and to talk to were made aware and they and Jack had those precious opportunities that mean so much. And while I'm as curious as the next guy, he made the right decision. We'll likely find out shortly.

Above all, the biggest lesson that Jack gave us with his death is the remembrance of who he was and what he stood for. His love of life, the love he had for his family, the love he had for his country are all things we can all aspire to. So the great lesson of his death is his life. Who knows what his legacy would have been if he lived longer, but the one he has left with us now can change us all. As he said at the end of his letter,

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world.

That's something we should all aspire to.

With thanks to the Toronto Star and The Globe and Mail.

August 16, 2011

Making choices.

I just finished reading a great book called "DNR - Real Stories of Life, Death and Somewhere In Between" by Lauren Jodi Van Scoy MD. I didn't know what to expect, but the real life stories were extremely powerful and made me think about choices - the choices we make and the choices people make for us - and how important this is when you are faced with a deadly disease.

The first choice you make is whether you want to talk about what's happening to you and who you want to tell. In my last post, I wrote about how important it was to talk about it, but it's up to you to make the decisions about when and who. Your family should always come first and, for some, it may go no farther then that. But most of us have friends, co-workers, acquaintances or others who should probably know sometime but it should be left to you rather than an email blast from a well-meaning friend who likes to be the first with all the juicy gossip. We all know people like that, but this is pretty personal stuff, so it really should be you. Once you've told others, let them decide when they feel comfortable talking to you about it. Some people may not be able to because it upsets them too much and that's okay; that's their choice. They will find a way to express themselves when the time is right for them.

The next choice is a big one. It's the choice I had to make whether to continue treatment or to stop. For me it was all about quality of life, and I've written plenty about that. I just want to make it perfectly clear that this is not a choice between fighting and giving up. I have fought this disease long and hard and I have many more battles to fight before it finally kills me. I have just decided to discontinue optional treatments that cause me to have severe side effects with no chance of cure and it was the right decision for me in my situation. It may not be for others. Others may choose to try anything they can get their hands on, hoping for a miracle. They may call that fighting, but it some cases it may be a form of denial (see my July 25 post for further discussion on this). But it's their choice and no one else should be making it for them or pressuring them one way or another. Whether you choose to fight aggressively, to accept that there is nothing you can do, or to live in denial, I wish you all the best.

There is a very important wrinkle to this that needs to be discussed (I've seen a number of blogs on this recently), and that is the role that doctors play in the decision making process. While doctors don't and shouldn't make the choice to continue treatments in general or to undergo specific treatments, they have a great influence over patients and their families. Many doctors and other health care staff don't like to tell people that they are going to die, either because they don't like to be the bearer of bad news or they don't want to be responsible for dashing all hope. Or maybe they themselves are hoping that the next drug or surgery will work, or the next one after that. Well, I don't want false hope and I don't think anyone should be given false hope, especially if it means spending your remaining time in misery. These are critical decisions affecting a person's remaining life and they should be given all the information available so they can make the choice themselves. Doctors should be compassionate but factual. We patients need to know the numbers, the risks, the alternatives and the implications for our particular situation (as opposed to averages from clinical studies) so we can make the choice that's right for us. Even if it ends up killing us sooner!

Most importantly, there are the choices around end-of-life care. While we are still of sound mind and can communicate, we need to decide how we want to be treated when it gets near the end. Do we want to be at home or in a hospital or hospice? Do we want emergency or palliative or hospice care? Do we want to be kept artificially alive on machines? If our heart stops, do we want CPR? Who do we want to make any final decisions for us if we are not able? These are critical choices that should be made by us and not by doctors and nurses who have no idea what we want and therefore have to do whatever it takes to keep us alive as long as possible. It's not fair to us and it's not fair to them. So I strongly urge everyone to look into living wills, power of attorney for personal care, DNR, etc. and talk to your family so everyone knows what you want to do. We all want and deserve a good death, not one surrounded by questions and confusion where our loved ones are forced to make monumental decisions that they're not prepared for.

And finally, there are the choices that you can make in advance about whether you want to be cremated or buried, where you would like to be buried or have your ashes scattered and what kind of party, wake, funeral or celebration you would like for your family and friends to remember you. These shouldn't be difficult and, if they are made well in advance, they shouldn't be upsetting. Once again, you can ensure your wishes are carried out and save your loved ones from making decisions in the dark. Let it be your choice.

I really don't want to make any specific suggestions in this post. I just want you to think about these important things in advance and make the choices that you want to make. Don't make your family, your doctors, or anyone else try to guess what you want. It's not fair to them, it adds to their grief, and it takes away from the celebration of your life, which is what it should be all about.

I know what I want! Do you?

August 8, 2011

What's in a name?

What's in a name? Sometimes a lot. When you're dying, the terminology you use can make a big difference in how people understand your situation, how they treat you and even how they feel inside themselves.

With cancer, it can be even more confusing. Some people automatically think that cancer is a death sentence, particularly if they have had several cancer deaths close to them. In that case whether its "terminal" or not, they figure you are going to die some time. At the very least, they are not surprised when they hear that you are now terminal. With so many people surviving cancer, others figure that you're probably going to live and even if they are told that it has metastasized and can't be cured, they don't really think you're going to die. I recently had a relative say to me, "Ha! They've been saying you're going to die for so long now.... you'll be just fine!". I was so shocked, I didn't know what to say to her.

When my cancer first recurred, I had one chance to stop it with what is called "salvage radiation" (another nice expression). When it was clear that didn't work, I started telling people that my cancer was now "incurable". But with no real time frame to go on, it seemed a long way off and I think that most people thought I would still be okay. And, yes, some people made a point of telling me that. Even when my cancer metasasized, people didn't suddenly look at me like I was going to drop dead. It was just more of the same. I don't know why this is, but perhaps our fear and lack of knowledge of cancer causes us to "park" the idea that the person is going to die until they are on their death bed or they get an invitation to the funeral. It wasn't until my oncologist gave me an actual timeline of 12-18 months that people seemed to understand that this was really happening. It was then that I started to use the term "terminal", which seemed to have a bigger impact. But even then, there were a few who felt it necessary to point out examples of people who lived way past their initial time frame. And while I know that they meant well - trying to give me hope - it seemed that they believed it would be the same with me. So I have to wonder when it is that people finally come to terms with the fact that someone is going to die so that they can both deal with it. For some, calling it "terminal" rather than "incurable" seemed to make a difference. For others, hearing a specific time frame made it real. The point is that knowing and accepting that someone is really going to die allows us to talk about it, come to terms with it, and to begin the important step of beginning to mourn the impending loss of a friend or loved one.

Another term I have some difficulty with is "survivor". Those who study these things tell us that we join the ranks of survivors as soon as we are diagnosed (usually with cancer). Generally, people think of surviving as having "beat" the cancer. While it is good to think that it's gone for good (which it is in many cases), it tends to ignore the fear that all cancer patients have of a recurrence, a fear that can have deep psychological effects on the survivor. In my case, I happily accepted the mantle of survivor after my initial treatment, but once it recurred, and particularly when it metastasized, I never felt comfortable with the word. I was not going to survive this disease and I knew it, so I didn't feel comfortable being introduced as a survivor. Perhaps others take comfort in the term because it represents the hope of a victory over death. For sure, people generally don't want to think about death or the often horrendous things we must endure to become "survivors". I no longer want to be called a survivor. I feel like a fraud walking in the Survivors Lap at the Cancer Society's annual Relay for Life, although I do it to support others who have truly survived.

It's interesting to note that even some metastatic cancer patients with zero chance of cure, still think they had a chance (52% in one study - see link to the right). Is it hope? Denial? Whatever it is, it's important for medical staff and family to know both what the reality is and what the patient is thinking.

My key premise in writing this blog is that it is important to think and talk about death. This goes for everyone, but particularly for those who know they are close to the end. In no way should this be the only topic of conversation with friends and family - it's important to focus on getting the most out of every minute we have left - but IMHO it is essential for anyone in this situation to talk it through and deal with any fears, regrets or unresolved issues so they can go in peace. It is equally important that those close to you know what is happening to you, how you want to be treated now, and any directions you have for end of life arrangements. It is wrong to avoid the subject. If everybody did that, then there would be no one for the dying person to talk to about one of the most important events of their life. You can't hide an elephant of this size in the room. You may think you are protecting them, but you may in fact be robbing them of something very important.

So to summarize, if you know someone who is "dying", or is "going to die", or is "incurable", or is "terminal", you need to make sure you know what's really happening, accept it and be prepared to talk about it, no matter how uncomfortable it is for you. It's always better to be open and honest. Be the friend they need and show them the love and respect they deserve.

Shoot the damn elephant!

Don't we owe them that much?

August 5, 2011

What will I miss?

With an expectation of leaving this world within the next year or two, I think a lot about where I'm going, and I will certainly be blogging on that subject a lot.  Naturally, I also spend a lot of time thinking about what things will be like for my family when I'm gone.  But I also think a lot about what I'll be missing over the next 30 years or so, beyond the obvious.

Of course, I will miss everything associated with the lives of my wife and children, particularly things that fathers and husbands should be participating in.  But outside of these, which are like a black hole in my vision of the future, there are other more simple and even mundane things I will miss terribly..... well, at least a lot.

I love movies and now that the technology has advanced to be able to bring all sorts of classic comic characters, adventure heroes and science fiction epics to the screen so realistically, I know I'm going to miss going to the movie theater with the smell of popcorn, the upcoming movie trailers and seeing my childhood favorites come to life.

I also love to read and get tremendously excited to download the latest works from Stephen King, Iain Banks and many others on my Kindle.  I'm going to miss that pleasant anticipation and the satisfaction of delving into a new story that promises to captivate my imagination and, for a time, take me into another world.

When I was young, I was really into all forms of science and science fiction.  It was thrilling to follow the first men in orbit, the moon landing, the launch of the space shuttle.  I fully expected that by the turn of this century, we would have space stations, moon colonies and routine trips into space for civilians.  Well, things didn't happen quite like I hoped but now, for sure, I'm going to miss all of those things.  Even if I lived another 30 years, I still might not see them, but I nonetheless feel a sadness that I will miss it all.

I will also miss some of the simple things like sitting out on my back deck on a warm summer day, feeling the breeze gently caress me while I read or chat with Dianne or our friends.  And how about diving into a bowl of ice cream with caramel sauce (like I just did) or having a cold drink of pop on a hot day.  Or waking up the morning after a huge snowfall and seeing how beautiful the world outside is while I'm warm and safe inside and don't really have to go out at all.  Staying up too late, propped up in bed, just talking to Dianne about "stuff" with our dogs curled around our feet.  And that wonderful feeling I get when Dianne looks at me with a love that has grown stronger over 34 years of marriage.  And even that dumb look of unconditional trust in my dogs' eyes when they look at me sometimes.  Priceless.

As a kid, I spend much of my life living on hydroelectric projects "in the bush" and learned to love the great outdoors.  Later, every summer for many years, I would kayak and camp with one or more of my close friends in some of the most beautiful parts of the country.  I can't physically do that any more, but I can still take trips to cottage country and, on very special occasions, be invited to stay at a friend's cottage where I can revisit the water, the trees, the beauty of nature.  I am really, really going to miss that.  I'm not truly at peace unless I'm in that kind of environment.

But then again, maybe that's what heaven is like!  Wouldn't that be a great place to spend eternity?