For the first several months of this blog, I spent a fair amount of time working on my posts. I wrote a lot of things that never made it in front of any eyes other than my own, and sometimes Paul’s. I used writing for the blog as a way to process what was going on. I’d write a bit, save a draft, do something else, come back and delete, edit and write more. I was on a leave of absence from work, and was at home most of the time, so I had lots of time to give to my writing.
For the past month, I’ve been trying to hold down a job again. It has taken a while for me to work back up to a relatively normal schedule, but I’m getting there. What this means, however, is that I have many fewer hours each day in which to deal with household chores and medical bills, process my feelings about the myriad things that are “up” for me right now (Paul’s health and emotional well-being, my physical and emotional well-being, our finances, our future… you get the picture), and, oh yes, think about blog posts. So I’ve been spending less time writing my posts. Sometimes, because it’s just easier, I’ve posted photos of our cats or written travelogues about past anniversary celebrations. Or, when I’ve been particularly worked up about Paul’s medical care, I’ve done what, for me on this blog, passes as venting.
You may not have recognized my posts from May 27, May 28, June 3 or June 5 as venting. Looking back at them, I recognize that I wasn’t particularly clear in expressing my frustration and anger (though you could certainly see it leaking out all around the edges… need more therapy, Kimberly?). There was a whole lot more kicking and screaming going on in my head than I put down in writing. And there was a whole lot less processing of and reflection on my feelings than went into many of my earlier posts.
Melanie nailed it in her description of the downward emotional spiral arising from the absence of needed attention/care: frustration, anger, depression, withdrawal, isolation, resentment. I won’t speak for Paul, but I’ve gone pretty far down that spiral a few times recently, and for me, each repeat trip seems a little faster. And, unlike the rat who, having learned the maze, gets to the cheese faster, this human still isn’t getting her (or her husband’s) needs met. Clearly, we have not found a satisfactory strategy. So, how to get the needed care? First (deep breath), I have start again with the (previously held) assumption that the folks at UWMC are both able and willing to help us solve the problems that Paul is having. (And that if by some chance they can’t, someone else can, and we just have to keep looking.)
Just so you know, I’m not planning to dump on Dr. Futran’s desk either the President’s Cancer Panel report on survivorship, or the large number of patient-education PDF files and web pages related to swallowing and tube feeding that I’ve found on the web sites of other hospitals/organizations and even UWMC. Here’s what I am planning to do: Along with Paul, write a letter to Dr. Futran, using the list of recommendations from the CPC report as a (hidden) framework. In the letter, discuss how we feel about the care that Paul has received (both the positive and the negative), and what we want/need now in the way of records, information, resources, etc. Include a list of questions that we want to have answered regarding Paul’s healing, swallowing, tube feeding and follow-up care. I’m thinking about faxing the letter to him a couple of days before Paul’s appointment on July 1, so that he’ll have time to read it before he the appointment.
In the meantime, I’ll try to work on a little more clarity here, too. But understand that there may still be the occasional passive-aggressive leakage… or lots more pictures of the cats.