Chondrosarcoma – ah shit, bob's sick

I haven’t written for the blog much this past month and some folks have been writing asking “why” and if everything is alright. So the short answer to that question is “yes”, everything is fine and dandy.

Now here’s a longer version of fine and dandy:

My last post was April 24th and since then a lot has happened and even a few things have changed. One of the more interesting items that’s been accomplished is that we did our last radio show on April 27th!

I written before about the reasons why we were going to stop broadcasting … but now it’s done. I’ve packed up the studio equipment, everything from cords and mixing boards to microphones and music, and along with all the other equipment that goes with standard broadcasting, boxed it up and prepared it to move to the StreamingOldies studio over in New Hampshire! Now that’s exciting and I’ll be posting more about that over the next few weeks.

What it does for me, is buy more time to work on finishing up some of my current projects, and more time for things like writing for this blog. I simple never realized, just how busy our lives were until I wanted to begin disassembling some of it. It’s been a challenge just finding the time to slow things down enough to begin the process of closing some activities down. I don’t like to simply walk away from things … I like to take them to the end and if I can, pass them on to someone that wants them, and that’s exactly what we’ve tried to do.

More time? Yes, I’d like to do a little traveling (which is another post on it’s own), and have some free time to work on some cancer related projects I’ve been thinking about. No, I’m not going away, I’m simply changing the things I’m involved in, and refocusing my energy on what’s of the utmost importance to me now. Life has changed. You might say I’m altering the matrix.

Even at home, I’m rebuilding our network for easier maintenance, adding new Windows 7 computers, network printers, wireless devices and so on … all in preparation of these changes that are coming.

Which brings me to an interesting point. One of the most difficult things about having and living with cancer, or any disability for that matter, and something you don’t hear about very often is the “time factor”. I know, I’m certainly not the only busy person on the planet, but I was (and still am), a very active type person … but scheduling time, for a cancer patient, can be, not only one of the most daunting tasks, but it also brings a factor of undependability.

First off, I’m now realizing that there is an endless stream of appointments to keep. I really, really, mean that. I have at least (at a minimum) one scheduled doctor’s, therapist’s, or some medical professional’s appointment every month … and, they are never on weekends. They are often at least an hours drive from the house or office. They always interrupt the work schedule, and they usually drain your mind and body for the day.

Then there are the forms and information requests that come in the mail from hospitals, doctors etc etc. that are working on me with this. Then, which could take a whole person’s life by itself, is the insurance company’s forms and hassles. Every step of the way, they are in touch with you one way or another to either cover an item or reject coverage.

Even last week when I went to get measured for a wheel chair, it took three specialists (a nurse, therapist and wheelchair company representative), in two rooms, at a hospital, two and a half hours, to check me out … and believe me, I’m a well documented case. That’s two and half hours of poking and prodding, and two hours of driving (one each way), stopping for lunch … basically, it blew the day away.

Of course, everytime you spend a day like this, you fall further and further behind in other duties whether it be work related or life-in-general related. You never catch-up. Often, this stuff can take two or three days a month!

Then, in order to receive the prescriptions I need monthly, either Sher or I have to physically drive down to the doctors office and pick-up a paper prescription. Now that’s a super pain in the butt … it’s the same damn “hoop” to jump through month after month.

They can’t just send it to you … no, that would be too easy … “let’s make the sick and dying drive to their doctors every four weeks for the same reason over and over” … it’s crazy.

It takes both Sher and I, the bulk of our time, every month, just to maintain life, and this is just because of the cancer and being sick.

There are several days a month when I’m not feeling well enough to function on any level, let alone trying to accomplish this type of stuff. Some mornings, it takes all the energy I have just to make it to the coffee pot let alone work and or appointments. But wait!

We’re not finished yet … this is just the part of life that deals with cancer. Now let’s add the everyday survival type stuff. Hmmmm … shopping, raising a child, house and home maintenance, car care, lawns, etc. etc. It’s no wonder that it takes the two of us, all day, every day, just to keep it together.

The point is, cancer people are busy, really busy. A lot of people don’t seem to understand that. Even doctors and hospitals, don’t seem to understand that making you wait an hour in their office can be devastating to the remainder of your day.

What does all this ranting mean? … who has time to be sick!

Well, now of course I’ve gone off on another rant about time, and have probably squandered another perfectly good hour of yours in doing so, and never got to tell you about the changes I’ve (we’ve) been making to change this situation.

Anyhow, I am relatively well, or at least considering the situation, I think as well as could be expected … just remember something, people with cancer and other serious illnesses and disabilities are busy people too. We like to be called upon to help and do things … but be sensitive about wasting our time. There isn’t always much time in general and none to waste.

Later in the week, I’ll write the original intent of this post .