Musings, appointments, and ....

An email from a relative today made me think again about the complexity of the problem of this cancer (and I expect this is true of many kinds of cancer... this is just the one I have to pay attention to right now).  And I'm not satisfied with how accessible my story is to people who might be able to use the information. So, I'm thinking about how that might be done within the confines of this blog. If anyone following this has suggestions, please email me - neale.barret@gmail.com.

But back to where I started... which is on the complexity of correlating the data to help new patients make a decision.  I think it's an amazing thing to say, as one of my doctors did, that deciding on a course of direction is like buying a car: you want a red one or a blue one?  He meant that as far as he was concerned, the data supporting surgery was about the same as the data supporting some of the other approaches.  At least that's what I think he meant.

But is that the issue, really?  I don't think so. 

What's at issue is getting the newly diagnosed person over the initial shock of the diagnosis to a place where they can be emotionally and intellectually poised to dive into the treatment and be positive about what they're doing.  Almost everyone says you need to be positive to fight cancer, but without understandable, up-to-date information, how can you get there?

I was lucky.  My urologist said - you have some time, but should choose a course of action within the next 4-6 weeks.  Some people are told something more immediate.  But even so, if I had been working on a shorter schedule I think my need to have a better way to correlate the data would only have been greater!

OK... so the glut of general information is just that... a glut.  And wading through the glut is a royal pain.
More on that tomorrow.

Speaking of pain, one of the more painful things in this adventure is scheduling.  I know I suck at it.  So when someone does it for me, I'm almost crying I'm so grateful.  When I stepped onto this particular track in September (when I made the decision to go down this course of treatment) the radiation oncologist's office kicked off a monster scheduling effort that took them all of half an hour.  It would have taken me weeks.  And I am not kidding.  Getting two doctor's schedules to fit... because even though I chose radiation as a course, my urologist is involved ... from giving me the hormone shots to being involved in the seed implant procedure and pre-procedure work-up.

So I thought that schedule was all set.  Until last week when the urologist's office called and said they wanted to move one appointment.  So they moved that.  Then they called back and moved it again. At which point I started asking poor Valerie (not her real name) about how that fit in with the other flurry of appointments leading up to the procedure (which, thankfully or not, has not moved).  Valerie was ok with my first two questions, but when I got to 3 and 4, she needed to get back to me.

Lesson: Be polite, but don't be bashful.  (That's a lesson for me... ok?)  So now I think I have the schedule in place.  One day is completely wiped out for pre-procedure ops... and I count on a couple more for the day of the procedure and following that.

And yes, this does help me get some of the worry and thinking out, even if, as I fear is the case, it only adds to the noise out there about prostate cancer.  I want to make this usable and valuable.  That's my goal.  But I suppose that at one level, if it helps me, then it met criteria.  And that, surprisingly, made me smile.