Hurry up and Wait!

One thing is for sure, you need to be patient being a cancer patient. A great deal of time is spent waiting. Waiting for appointments, waiting for results, waiting for doctors and waiting for next steps. Being a 'get it done kind of guy', this is very difficult for me. Sitting in many different waiting rooms over the past few weeks, you can see others also patiently waiting. As I sit there I think to myself- Why are they here? Are they a patient or a caring support person? What type & stage of cancer do they have? What was their life like prior to their cancer diagnosis? What would they be doing if they didn't have to be here?

Most of us sit in silence waiting for our name to be called. There is an eerie silence. I find it difficult to strike up a conversation with others who are also waiting. What would I say? Will I offend someone? I'm not even sure that I would want to talk about my own journey out loud with others. As I look around the waiting room I get the sense of melancholy. It is as if all of us sitting here are frozen in time. Our lives have suddenly been put on hold and we focus on our individual cancer journey. And we wait!

Don't get me wrong the medical professionals are trying their best to keep on schedule and reduce the amount of time that we have to wait. I can imagine how difficult is must be for doctors, nurses and other health care professionals to meet with families, share results and updates. You can't rush this. Each family deserves the time they need to ask questions and understand what is happening every step of the way.

Waiting for news and outcomes is the hardest of all. Tests results take time and sometimes the time between the test and the sharing of results can seem like forever. Too often lately my results has not been positive. Despite this, we try to remain positive.

As a cancer patient or a family member of a cancer patient, we need to be patient. In most cases it is hurry up and then wait.

Richard

Needles, scans and tests oh my!

Over the next three weeks, a whirl wind of tests, scans and appointments were ordered to determine the stage of my cancer and my treatment path. Since the tumour was very large, time was of the essence. We decided to select treatment close to home. We are so fortunate to have a regional Cancer Centre so close to our home. I can't imagine having to travel great distances for these tests. What must others be going through to get this information. Being away from home, travel times to and from appointments and even parking fees. This just adds increased levels of stress and concern for families.

Having recently retired as an elementary school principal, I thought my days of appointments, schedules and calendars were behind me. My fellow retirees had told me that retirement was freedom!

Freedom would have to wait. I needed a calendar to sort out and keep up with all of tests, scans and doctors appointments that were being scheduled for me. These tests were the diagnostics needed to determine if my tumour was indeed cancer, and if so, what stage of cancer I had and what the treatment plan would be. 

I have had more needles poke through my body in the last few weeks then in my entire life up to this point. Not really fond of needles. Try to avoid them, whenever possible but I really didn't have a choice. Unfortunately not possible to avoid in these circumstances.

I must admit that I am a little bit afraid of confined spaces in general, but having a CT scan and an MRI really tested that for me!   Not knowing what to expect is really the scary part, along with the fact that you are placed in a small tube like machine and told to stay completely still for several minutes. Not easy for a generally hyper person like myself! I really surprised myself that I could remain perfectly still for 30 minutes in an enclosed space. I was proud of myself for being able to stay still for that long but again I really didn't have a choice. I wanted to be sure that the test was completed once and that they would get the information/results that they needed to complete the treatment plan.

On Friday, August 9th, Michelle and I met with the thoracic surgeon who confirmed that I indeed had esophageal cancer. More appointments were scheduled and the plan was to have surgery after radiation & chemotherapy to reduce, shrink or even kill the tumour and then take it out!

We continued on with our tests! Pulmonary function test, a gastroscopy and a endoscopy. The final and most important of all the tests was the PET scan we were told. It just happened to be the final appointment in my long list of appointments scheduled. This test would determine whether or not my cancer had spread beyond my esophagus into other parts of my body.

Let me tell you it was the scariest test of them all! Even worse then the MRI which says something. Noticing multiple signs about radioactive materials and Government of Canada warning posters were the first indication of concern. Having the nurse leave the room, go into a steel doored room and come out with a metal needle that looked like it was more appropriate for an elephant than a human was even more concerning. I was told to drink the liquid substance, was sent into a dark closet area to relax on a recliner for thirty minutes and then brought in for the test. Others, who had gone through this test before, had told me that you will light up like a Christmas tree if the cancer has spread to other areas of the body. At the end of the procedure, I was handed a disc to give to my surgeon and told I was able to leave.

Would Christmas come early or would the lights remain off? We would find out in two days.

Richard

Over the next 20 days

Stay positive! We can fight this. We can beat this, was what we both said to each other on the ride to Kingston later that afternoon. We agreed not to tell our three children until we returned after our visit to Kingston. How would we share this news with them?

Over the next 20 days a variety of tests, meetings and appointments would be booked. I was very impressed with the speed at which the initial diagnostic plan was set up.  The purpose of these tests was to confirm if indeed the tumour was cancerous and if so what the treatment options would be. I had so many appointments to keep track of that we had to start a calendar to keep up with them. Instead of basking in the enjoyment and planning of my second month of retirement,  I was busy visiting a variety of doctors, nurses and health care professionals to get scheduled to get a MRI, CT scan, PET scan, echo-cardiogram and this list goes on and on.

Although each of the doctors, nurses and health care workers and volunteers were polite and courteous, I couldn't help but feel that a large neon label was on me to indicate that I had cancer. At the end of each test, they would come up and briefly discuss what they found and say "Good luck" to me. What did that mean? "Good luck" was that a good sign or a bad sign? Michelle and I were not sure what to think of that comment. I guess it difficult to say anything at a time like this.

We still held out hope. Michelle began to research esophageal cancer and treatments. I secretly researched the stages of cancer. I really had no prior knowledge of cancer, cancer treatments or the fact that so many people are dealing with this diagnosis.

These twenty days were filled with appointments, tests, meetings and uncertainty. What is happening to me? Why? When will we know what will happen next. More questions than answers for sure.

Richard

Unexpected News

Friday, August 2nd, 2019. This is the day that changed my life path forever. What started as a simple appointment to determine the cause of my persistent heartburn symptoms turned into a life altering discovery that has led me on this new journey called cancer treatment.

For the past few months I have had increasing issues with eating solid foods. I would start to burp, hiccup and in some cases vomit my food. It started only happening on a few occasion but soon started to happen at almost every meal. I went to my family doctor to let him know. I was concerned because I had just had my annual physical and nothing seemed to come up. My family was also  beginning to worry as most dinners, I was running to the washroom and throwing up.

It was time to go to the doctor. At my appointment, my doctor weighed me and I had lost 15 pounds in three weeks. He immediately ordered an endoscopy for me. Within three days I got the appointment. Again, I was not too concerned at the time, as I thought it was my heartburn acting up again.

In the preparation room, getting  prepped for the procedure, I could hear the male nurse talk with other patients that were in recovery. He was telling one of them that they could go home now. He was telling them that the doctor only speaks with patients if there is a concern.

I knew something was wrong when that same nurse, after I had awoke from the anesthesia, told me that the doctor wanted to speak with me. He took me to the doctors office to wait. It seemed like forever, but a few minutes later, Michelle was brought into the room. She looked as puzzled as me as to why we were called into the office.  We had no idea about the news we were about to receive.

It didn't take long for us to hear the bad news. The doctor walked into the room, with a very concerned look on his face, sat down and immediately indicated that during the procedure he had noticed a large tumour had formed on my esophagus. He had then stated that it was almost completely blocking it. He was having difficulties going beyond it as it was so large. He felt that it was cancer, he took a biopsy sample of the tissue, and referred us to a specialist.   I was told that I would need to begin a liquid diet from that moment on as no solid foods would be able to get through. This was the cause of my ongoing burps, hiccups and vomiting.

It was that quick and that blunt. No pre-warning. We were in complete shock. What did he just say? Michelle was also at a loss for words. We couldn't believe what we were hearing. What? How? Why?

Devastation. Doubt. Shock. Tears. These were the first emotions and actions that followed. As we left the doctors office and crossed the street to get a cup of coffee to try to process this news, we hugged, cried and look at each other in complete disbelief. How could this be happening? When did this start? What did I do wrong?

The purpose of this blog will be to help share my own personal cancer journey with others. It is important to note that each person's journey is as unique as the person themselves. These are my experiences, my emotions, my thoughts. This is my cancer journey.

Richard