talkingaboutcancer.com

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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I’ve been posting here for quite a while, sharing my personal stories and feelings and hoping that my thoughts can help others who have cancer as well as their loved ones.  It is something that I feel is important and something that I will continue to do for as long as I can.

So why is it that I spend so much time every week cleaning out hundreds of spam messages that flood my comments inbox?  I filter all of my comments so as not to pollute this site with this kind of garbage, but you wouldn’t believe that stuff that comes through.  This is a site dealing with cancer, yet I get comments on animal sex, countless drugs, grow-your-penis supplements, credit counselling, and all manner of innane things.  I get comments saying, “Great site, webmaster” which means nothing to me and I wonder why anyone would bother posting something so meaningless to random sites.  Lately, I’ve been getting comments in what looks like Russian!

I’ll never understand what motivates people to randomly attack thousands of websites and email accounts with meaningless or malicious garbage.  But I really have a problem when they attack sites like this that are here only to help others.  I know I can’t do anything about it, beyond filter it out for you, but I have to ask, “Who is really sick out there?”

Just ranting……..

Posted by Doug

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There’s something about the word CANCER. When we hear that someone has cancer (regardless of the type or the prognosis) we drop our shoulders, tilt our heads and go, “Ooooohhhhh.” When we hear that we have cancer, our heart stops and we become deer in the headlights, imagining all of the horrors that we will be faced with – sugery, radiation, chemotherapy, weakness……. death. A lot of this is just ignorance, because few people know much about the 200+ kinds of cancer, staging, etc., but some of it is just the fact that the word itself has become synonymous with disease and, yes, with death. I see this all the time in the way that people react to the fact of my cancer, in the way they talk about it. People say, “you’ll be fine,” but they don’t know; they just want to make you feel better – or maybe it makes them feel better. I try to explain, as simply as I can, what is going on with me so they can understand the context of my feelings. For the most part, people take it well, even if they don’t know what to say, and I feel better for the sharing. But we have a long way to go.

This blog strives to help people understand the emotional impact of cancer so that they can be supportive and give strength to their friends and loved ones with cancer. For cancer survivors and those with cancer, it can show that they are not alone and they can derive strength from others who have been in their shoes.

I believe that anyone faced with a life-threatening illness experiences many of the same emotional stresses but that over-reaching specter of cancer adds another dimension by enveloping everyone close to us with a shared fear. This is why knowledge and understanding are so important. The doctors can fight the physical disease but we ourselves must fight the emotional disease by being open about what we are feeling and by helping others understand.

Cancer is not always a death sentence. It can be if it isn’t treated, but more than half the people diagnosed and treated will survive, some with little or no residual effect (at least physically). Rob Buckman discusses this in his book, Cancer is a word, not a sentence, by clearly explaining the impacts and outcomes of the different cancers.  If we can better understand this and help others to understand, perhaps we can lessen the emotional stress and the pervasive feeling of gloom that prevents us from dealing with it in a more realistic way.

So read through all of the posts and comments on this site and visit the links we have posted, and follow the links on those sites.  Read the books that are recommended and lend them to your friends and family.  There are many of us out here who want to help.  Post your comments so we can all benefit from your experience and insight.

Let’s talk.

Posted by Doug

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A couple of weeks ago, a friend of my wife finally succumbed to cancer. She had lymphoma and, while everyone thought she had been doing well, she suddenly deteriorated and died. She was a few years younger than Dianne and I with a husband and children and she should have had many more years with them. But it was not to be. It was interesting how this affected us.

Dianne attended the visitation with several of the “girls” who had known this lady. She was sad at her passing, but it struck a much deeper cord because of her worry over my recurrence and what that could mean. It personalized it much more than her other friends realized and she came home under a dark cloud that held on for several days. I had thought of going with her that night, partly for support , but also as a sign of respect for the bravery of a fellow cancer patient, a short-term survivor but a survivor nonetheless. Dianne told me to stay home that night and I’m sorry to say that I am glad I did. Apparently, the family had chosen to have an open casket and the poor woman… well… she looked like she had died of cancer. It was an honorable thing for the family to do but it was harder for Dianne to see her that way because it vividly displayed the physical tole that cancer can have. And I’m sure that, in her mind’s eye, she could see me at some future date.

I’m glad I wasn’t there, and I’m sorry to say that. While I’m doing pretty well with my own situation, I think it would have brought back a lot of feelings that I have managed to get past. It might have scared me. As strong as I am, there is always fear and I don’t want to die before my time.

Rest in peace, Gail.

Posted by Doug

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So Henry is Doug. You have seen several posts under the name “Henry” (which is my middle name) talking about a recurrence of my cancer and my treatment with salvage radiation therapy. I haven’t been posting as much as I would have liked because I was focused on finishing my treatment and also on updating my soon-to-be-published book. Recurrence can add a whole new dimension to the cancer journey, to say the least.

What is most telling, though, is that I felt the need to mask my identity. I am a professional with a job, a family to support and responsibilities. Coping with cancer on top of all of this is hard enough, but I was frankly worried about how a recurrence could impact my career now and in the future. It is unfortunately true that many people, upon hearing that you have cancer, automatically think of you as sick and dying. Yes, it can impact your work while you are being treated and while you are dealing with the emotional shock of a diagnosis but, for the vast majority of us, we can very quickly get back to work. We may have to do it part-time for awhile, particularly if our jobs are physical, but we can still work.

The cancer survivors that I know are some of the strongest people I have ever met. If you can handle a major life crisis like cancer and survive, I would argue that you can handle just about anything. That’s certainly how I feel about myself and how I think about anyone with cancer. I wish everyone thought that.

In my case, both with my initial diagnosis and also with my recent recurrence, I have been pleasantly surprised at the response. Telling people at work hasn’t hurt me at all and I am infinitely thankful for the support I have received. I wish everyone was so understanding.

I am a survivor and I am strong.

Posted by Doug

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