One day last week, I was changing wallets and found a lottery ticket. My husband walked by as I was checking it (not even a free ticket, no win) and asked if we won anything. Without thinking, I said, “We didn’t win on this ticket but I won the cancer lottery”. I say this because in my first meeting with my surgeon, she told me that I should know that nothing I did or didn’t do, ate or didn’t eat, caused this cancer. It happened through hormones and aging and truly, it is just random.
I have found that almost all of the medical personnel I have met since this journey began have been kind, compassionate, informative and instill great confidence. They have given me information as needed and not only answered all of my questions, they encourage me to contact them in between visits if I have concerns or questions. This has become so very important in this past week.
Around about the time I received my diagnosis, I woke up with pain and burning and thought, ‘oh great, now I have a bladder infection’. I saw my family doctor and received a prescription for an antibiotic and waited for it to go away. Prescription finished, a whole week went by and it didn’t feel any better. Now we weren’t sure what was going on and a requisition was sent out for an ultrasound for answers. We hear a lot about the backlog for tests and I was given an appointment that was three weeks away!
While waiting for this test, I woke up one morning and could hardly pee and the pain was no better. After twenty-four hours of this, I finally went to emergency at the hospital to see if they could figure it out. Now I am one of the more patient patients in emergency as in our family years ago, we had a serious emergency. My daughter was in a life-altering car accident and was treated for trauma in emergency. She still suffers great pain and many surgeries because of it. Because we had this experience, I never complain when waiting in emerg as I know that more serious cases take priority. Having said that, I was put in a room with a closed door and did not see or hear from anyone in over two hours. I find it concerning as no one knew what was happening with me. Nonetheless, a very enthusiastic resident came to see if he could help later that night. He and the attending doctor determined that I should come back in the morning for an ultrasound and then go back to emergency for results.
Next morning I had a most painful ultrasound and then went to wait to hear what was happening. When I was called in to see a doctor, I was taken to one of the recliner chairs that sits in the hallway open to all patients, those that accompany them and all staff. This gave me optimism that it was nothing serious or they would offer some privacy. The doctor came along to tell me that they have found a mass on my bladder. When I asked if it was cancer, he said he didn’t know and that I would need more tests. I left with a referral to a specialist who was to call me with an appointment early in the week. A week later, still in the same amount of pain, I had heard nothing.
So now, I decided that I had to do something. I called the specialist’s office and their line does not allow for messages so that led nowhere. I called my family doctor’s office and they were going to see if they could make something happen. I then decided to call my oncologist to see if they could help – should have started there. They are going to make this happen.
The reason I decided to tell this long, drawn-out story is because it’s all part of this whole waiting process. My biggest concern, after the one in my head that says I have a cancer in my bladder, is that whatever has to happen here will take so long and hold up whatever has already been scheduled to happen.
There’s so much not known, so much to find out, so many things that have to happen before they can even help. While we wait, my mind makes all kinds of assumptions from the very bad to the very hopeful to what the hell, I don’t know anything.
I think we often believe it’s like it is in the movies, they tell you the diagnosis and then treatment begins, but it doesn’t. Each appointment is just a step in an endless process and the waiting is so very painful and owns my whole life.
