talkingaboutcancer.com

Hi.  I don’t usually use this site as a platform for promoting upcoming events, but this is something I am personally involved in and I think it is very important.

I am participating in a very special event with Cancer Care Ontario, which will provide direction on the use of information technology to help with the transformation of the care delivery model to a more participatory and collaborative approach.  It’s a big topic and every little push helps.  Even though it’s related to the Ontario health care system, changes in this area are shared internationally.

As part of the overall event, we are hosting a Live Chat on the Caring Voices website on Wednesday, June 3 from 8:00 to 9:00 Eastern time.  I would really appreciate it if you could join in, even to just “lurk” (but preferably to chat), and send this to anyone you know who might be interested in participating, including any other patients, survivors and caregivers you may know.

Here is the text of the invitation with instructions on how to join:

Have your say with Cancer Care Ontario (CCO) and be part of turning ideas into action – Live Chat with Dr. Carol Sawka, VP of Clinical Programs and Quality Initiatives at CCO. 

Maybe you’ve already shared with friends, family, and others the frustrations and challenges of your cancer journey.  Now let CCO know how you think things can be improved.  Let your voice be heard!

CCO is developing a plan to improve the patient experience along the cancer journey.  Part of that includes hosting an event in partnership with the Cancer Quality Council of Ontario (CQCO) to look at how technology can be used to improve your care (or the care of your loved ones).  How?  By creating a more participatory model of care between patients, caregivers and providers through technology.  And by empowering patients, caregivers, and providers through tools that help navigate the system and connect people with each other.

Your chance to weigh in on these important issues is coming up on June 3rd at 8pm Eastern on www.CaringVoices.ca.  We welcome participation from patients, caregivers and providers.  Your thoughts, ideas, and concerns will help inform the discussion at the event and the CCO plan for improving the patient experience. 

To join this chat log on to www.CaringVoices.ca; create a user name and password and on the evening of the chat click on the link to “Join” from the events calendar.  Once you have registered on www.CaringVoices.ca be sure to check out the other great events, resources and forums.

If you have any questions please contact CaringVoices.ca through the “Contact Us” link or at survivorship@uhn.on.ca.

Thanks everybody.

Posted by Doug

No Comments »

Hi there, it is Dianne sharing again.  The first thing I must tell you is that Doug is not only a great husband and writer but also a fantastic “fix-it guy”…Mr. Perfection.  My girl-friends were always jealous at how well he did a project for us (i.e. designing and making a southwestern adobe fireplace in our living room) and how quickly and effortlessly he completed it.  If I purchased a new mirror or picture…it was up on the wall that night or the next.  Since Doug’s recurrence and the overall affects of surgery, hormones, HIFU…etc. he has not had the energy or strength at the end of the day nor the desire to do these things.

In the grand scheme of things I know that having a picture hung quickly is no big deal but, when you have been the kind of guy who this is important to and you can no longer do things that way, it can be very frustrating.  We now have to hire people to do the work that Doug used to do so easily.  Sometimes the workmanship is lacking and he thinks,  ”I could have done that better and quicker,” (and he is right).  This, to him, I know is a loss and it breaks my heart to know he feels this loss.  Sometimes I imagine cancer just taking away pieces of who you were (or perceived yourself to be) piece by piece.  It not only takes away your health but a little piece of you every day in small slices.

 I hate this disease with a passion and am mad at it for doing this to us.  But the great gift that this awful disease has given Doug is both the ability and desire to help others suffering like he is through his writing and gifted ideas he shares on this blog and at conferences and just talking to those he cares about.  He has always been a man that worked not only for his family but his community and now through this amazing site that he cares so passionately about.

Rock on Doug.

Posted by Dianne

No Comments »

I have attended several conferences and meetings recently discussing the role of information technology in patient care.  This is a real interest of mine and one that I have personal experience in.  Shortly after my initial diagnosis (I couldn’t do anything for about a week) I began what turned out to be an insatiable search for information about my disease, treatment alternatives, odds, personal stories, etc.  I used this information, primarily from the Internet, to manage my disease throughout my long, eventful journey.  Admittedly, I am a control freak about my health.  I need to know exactly (or as close as possible) what is happening to me and what I should be doing about it.  But I wouldn’t do it any differently.

I have been surprised recently to learn that many patients do not feel a need to know all about their disease, that they either don’t want to know or they are more than satisfied to follow their doctor’s orders.  Is this denial or blind acceptance of medical authority?  Perhaps.  But who am I to criticize how people choose to cope?  I just hope they are making a conscious choice.

Learning as much as you can about your disease has many, many benefits.  First and foremost, it gives you some control over a disease that is very hard to control and that makes its own rules.  This is important for me but may not be for others.  Secondly, it helps me make decisions in collaboration with my medical team.  This is very important.  The Internet cannot make you a doctor but it can help you discuss and understand diagnoses, test results and alternatives in an intelligent manner.  And not just with doctors.  I’ve found it very useful to explain my situation to family and friends in an understandable way.  This is my support network and they need to know to be able to help.

But most importantly, it can give you confidence that you are getting the best treatment possible.  If you know what the doctors know and, to some extent, what they don’t know, then you are better able to assess whether you are being given all of the information available.  That the decisions you make are based on the best information you and your doctors have.

When you are dealing with a disease that takes so much control away from you and that is fraught with gray areas, confidence is hard to come by.  Grab what you can.

Posted by Doug

2 Comments »