talkingaboutcancer.com

When someone you love has cancer 

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I recently had the rare pleasure of addressing a large group of leaders from the Canadian and Ontario cancer community, including funding bodies, cancer centers, coordinating agencies and government agencies.  The overall topic was Cancer 2.0, focusing on how information technology is changing cancer care.  I participated on a panel called “The ePatient is coming: Prepare to be disrupted.”  In fact, I was the only patient at the conference.

It was a great opportunity to share my personal story, how I used the Internet for support and education, and how I used this information to work with my doctors to make treatment decisions and understand all of the implications and side effects of my treatments.

In the course of my presentation, I went through the steps in my personal cancer story to illustrate that it is a long, involved journey with many, many stages, all of which have requirements for new information and resources.  It is this complexity and longevity that creates a real challenge for organizations who are trying to apply information technology solutions to provide good access to ePatients.  I wanted to share the list of steps/stages with you all because I don’t think people generally appreciate the scope of the journey.  It’s not just five or six steps, but many more.  So here goes:

Diagnosis > Options > Choice of doctor/hospital > Telling family and friends > Scans, tests, staging > Initial treatment > Side effects > Recovery > Support groups > Self image > Surviving/thriving > Health & fitness/nuitrition > Work issues > Sexual dysfunction/intimacy > Disease progression > Fear of recurrence > Mortality/spirituality > Recurrence > Options > More scans and tests > Treatment > Side Effects > Depression/grief > Emotional coping > Fear of no cure > More scans and tests > Metastasis > Symptoms > New treatments > Options > Palliative care > Medications > Side effects > Drug Interactions > MedicAlert > Life expectancy > clinical trials > Career > Finances > My “secret identity” > Quality of life > Things to do (bucket list) > End of life > Those left behind > Hope > Legacy

This is what my life has been about for the past six years and what it will be for the next while.  Everyone with cancer could write their own list and, for many, it may be even longer or more complicated.  For those of you with cancer, think about your journey and perhaps share it with us here.  For others, I hope that this gives you a better understanding that will help you to help those you love.

None of us choose this journey so we must make the best of it.  Understanding it fully is so very important.

Journey on.

Posted by Doug

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Cancer is such a complicated thing and so difficult to talk about, even with close friends and family.  I am continually amazed at the range of responses, types of questions, and reactions when the subject comes up.  Here are a few recent examples to give you an idea.

Sometimes there is a message in the silence.  Recently, my daughter moved from a basement apartment to a nice new condo.  It was one of those situations where the timing all went wrong and she didn’t get all the help that she would normally have.  So she and her roommate rented a truck and did it themselves, with Mom helping with the settling in after.  Not once did she ask me for help.  I would have in a heartbeat, but she didn’t ask and I know it is because she knew it would be hard on me (as I continue to struggle with pain and medication side effects).  Normally, she doesn’t talk much about my situation anyway, but in this case, her silence said it all.  It told me that she understands, and that she cares like the wonderful, grown-up young lady that she has begun.  How great is that?

Here’s another one.  I had a long overdue call from one of my relatives the other day, a man not normally short on words.  Having had the experience of his own wife dying from cancer, he clearly understood the issues that I was facing.  When I told him that my main hope was that they would find a cure for my cancer while my treatments were slowing down its advance, he said, “Well we know there’s a fat chance of that.”  He said what he believed and that is just the way he is.  Thankfully I’m not sensitive enough to have taking it badly, but I venture to guess that my friend Lori Hope would not have included that one in her wonderful book, “Help Me Live: 20 Things People with Cancer Want You to Know, which we profiled earlier.  I think I just chuckled after I hung up the phone.

In a different vein, we had some good friends over for dinner the other night and one of my buddies started congratulating me on my “great news”.  At first, I didn’t know what he was talking about but then I realized he was referring to the fact that my PSA had gone undetectable as a result of my hormone therapy.  You see, I know that this is a temporary thing because this effect may only last for a few years (although it could last longer) but it became clear that he thought it might be something that would last permanently.  I found myself not knowing exactly what to say and, in explaining the reality to him, I was uncomfortable and felt that I was taking something away from his gregarious hopefulness and well intentioned best wishes.  I love him for his concern and thank him for his kind thoughts, but my point here is - if I was uncomfortable talking to him, how much more uncomfortable must it be for others to talk to me about it? 

Complicated, isn’t it?

Posted by Doug

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Having cancer is a life-changing and, for many, a life-long event.  For almost five years I was okay to call myself a survivor, because I had survived.  Although my cancer is now back and has metastasized, I still consider myself a survivor (largely because I’m still around) but everything is so very different.  I have had to adjust to so many things.  I can’t simply “get on with life” anymore (as I would tell everyone else) because recurrence and the consequences of advanced disease have become the largest part of my life.  New treatments are called for to address the cancer directly and to treat the symptoms, particularly the pain.  And, as I have discovered, the treatments create their own symptoms which, in turn, have to be treated.

I have four different types of oncologists working with me and I have to see each of them separately.  I’m taking literally handfuls of drugs every day on top of the ones that I have injected every few months.  And I do all of this while working full-time and while trying to enjoy the rest of my life.  New coping strategies are called for.  It’s difficult to talk to people about it.  Most people don’t understand enough about an initial cancer diagnosis, let alone a recurrence or advanced disease.  I’m so lucky that I have a loving wife to share all of this with, although I feel so bad that she has to bear the brunt of my emotions (see my previous post), but her strength holds me together.

However, it seems never-ending…. relentless…. and often overwhelming.  I know that this is normal and I know that, somehow, I have to keep moving forward.  And I do.

But it’s a long, long road.

Posted by Doug

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I had another great chat with my friend and counselor, Andrew, yesterday and he gave me some good advice that I wanted to share with you all.

As I look ahead to what the future may bring for me, I worry enormously about the impact it will have on my wife and kids, particularly my dear wife who is my soul mate and who truly is the most important person in my life.  I know this is normal for two people who love each other as much as we do, but a critical or terminal illness significantly complicates any relationship.  I worry more about her and her future than I do about me.  I mean that.  I have this disease and it sucks, but I have to deal with it and I will deal with it.  But for Dianne, she is like an innocent victim and I can’t help but feel responsible in a big way for the impact it has on her.  So I am constantly worried about sharing with her how I feel and, in particular, of showing my emotions when she is feeling raw herself.  I just don’t want to upset her any more than she already is.  I don’t want to compound things.  But Andrew put it in perspective for me.

He said that I needed to talk when I have to and show my emotions when I’m feeling them, no matter how Dianne is feeling at the time.  Dianne has to experience her own fear and grief, and sharing that with me is an important part of coping.  But that goes both ways.  She needs to see and feel what I’m feeling so that we can both develop the strength to deal with whatever will come.  He suggested that it might, at times, spiral out of control a bit, but that was okay.  We would handle it and we would be stronger for it.

There have been many bumps and heartaches on this long journey and there are many more to come.  I am blessed that I don’t have to travel it alone.   And if I can do it openly and honestly, it will be better for both of us.

Thanks Andrew.  You have lifted a burden off both of us.  For anyone else out there in the same boat, don’t fear to share.

Posted by Doug

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