So what was a typical day like for me during those early days? The reality of a stage 4 cancer diagnosis is that it creates a crisis situation. At least that was my experience with my husband’s cancer. It came on so fast, or was diagnosed so late, however you choose to look at it, that it sent us both spiralling down, together and apart. There were two distinct roles identified by the medical and support staff, that of the patient and that of the caregiver – rather obvious but still very significant to point out. Because really, when your partner, significant other, child, parent, loved one gets diagnosed with cancer, in a sense, you become a victim or a “patient” as well. Mentally, physically and emotionally you have suffered a tremendous blow. At the same time you are identified as the decision maker, support person, the coordinator for the cancer patient. It’s like getting a blow to the head repeatedly while trying to carry on a normal conversation. People expect you to make decisions when all you want to do is curl up in a little ball and let the world go by.
So in my case, within one week we were immersed in attending visits to the doctor and the hospital. The second week we were attending the hospital where my husband would receive his oncology and radiation treatments to set up his round of radiation. The third week was radiation for the first four days and in the fourth week we finished off the radiation cycle. So this first month was literally a blur. It was driving to appointments, fielding a myriad of phone calls from medical agencies tasked with setting up supports for us in the home. It was sharing this crazy news with friends and family. It required notification to our employers to inform them and determine what was required on our part to move forward in this process and to access our health benefits. We had to make hard decisions, such as whether we sign a Do Not Resuscitate (DNR) and advise local agencies if we wanted to sign an EDITH Agreement (Enabling Death In The Home). It was retelling our story over and over and over, because all these agencies needed a patient statement. It was moving forward on a path that we had no knowledge or preparation for. So what was a typical day like during this time? Honestly, no day was ever the same, they were all long and they were all filled with incredible fear.
The radiation treatments were completed in week five, and then began a terrible journey into the world of pain. During this period – weeks five, six and partially seven, my husband was incredibly weak. His mobility declined, his energy left completely and he spent more and more time in his bed, it was just easier. We experimented with his medications for pain until we came to the right mix. We worked with the visiting nurse to stay ahead of the pain and the intense nausea that accompanied it. We bought him an electric chair to enable him to sit comfortably in the living room of our house. Friends of ours gave us an electric bed that allowed him to get in and out of bed easier.
Also during this time my husband had his first lung biopsy. Despite a rather dire prognosis provided by the radiologist, my husband had committed to doing at least one round of chemotherapy. To determine the appropriate treatment course a biopsy was needed. The first biopsy did not yield any conclusive findings, so to his dismay, a second biopsy was necessary. Also during this time period the picc line was inserted in anticipation of chemotherapy. Our medical system started to kick in and we had some much needed equipment delivered to the house.
This was the onslaught of our experience with cancer. Hell of a way to spend a summer.