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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