This disease impacted our lives so much over the last 3.5 years. We were in a constant waiting mode. Waiting to schedule appointments, waiting to see Doctors, waiting in the ERs, waiting for procedures, tests results, new medication, CT scans results, MRI results. Waiting to see if the treatments were working.

Well, F you bladder cancer we are liberated from waiting. We no longer have to anxiously wait for a call from Sloan Kettering, have our hearts skip a beat when we see that dreaded number. We no longer have to wait indefinitely for the results of a CT scan, we no longer have to wait for a doctor to return a call on how to manage any symptom or pain that David was experiencing, we no longer have to wait only to hear a doctor say in the most nonchalant manner “sorry I cannot help you”. We are free from waiting for senseless information.

Whenever David had a CT scan, he preferred that they do not call until Monday so that he could enjoy his weekend.  I learned to adopt this approach also. However, at the start of the new week, in most cases, I still had to call the office for the results. At the beginning, we used to go into the office for the results but as time progressed they told us over the phone. The wait in the office was even more painful and could take up to two hours.

The waiting was so destructive and it was torture. Our experience showed me that many doctors and their staff are completely disconnected from the mental anguish families go through. They seems to refuse to understand the level of anxiety patients went through, perhaps it is because we sit patiently in their waiting rooms with a calm disposition. I recall one day as we waited on pins and needles, eventually, we got called to the back and we were asked to complete a survey for “research” purposes.  I was completed irritated as I told the youthful researcher that while I appreciate the need to support research and science, my priority at that instance was the result of David’s CT scan. She was apologetic and I told her that I can complete the survey after we received the results – also depending on the result.

We learned a lesson about patience in a way that is completely unnecessary. It was pretending to be patient while our minds ran wild and our ability to eat or drink halted. Why bring patients in just to wait for hours? Why sit on results for so long while patients are glued to their phone anxiously awaiting the call? Why does it seems that the doctors calls after-hours just as we stepped away from the phone and became unreachable until the next business day and leaving us in anticipation for at least another day?

There is some relief knowing that we are no longer at the mercy of the disease progression, the inadequate treatments or the unavailable doctors. However, it does not take away from the pain of losing you. We will have waited patiently until we found a cure.

This is one of several posts that details our experience with bladder cancer. A concise summary of the overall experience can be found in the blog post titled “breaking the silence”.