Well what a long day the first day was at Sunnybrook. We left the house at 6:00 am and didn’t get home until 7:30 pm. It was the first time meeting my oncology team at the Odette Cancer Centre in Sunnybrook Hospital.
Once we checked in at the main reception area at the Odette centre, we were directed to an area with a few computer kiosks where I would need to complete a wellness questionnaire. I had to assess how I was feeling that day. On a scale of 1 to 10, where 10 is worst, I had to let them know if I was sleepy, nauseous, fatigued, confused, having pain, having shortness of breath, could I perform my usual daily tasks, etc. I had to print it out and hand it to the triage nurse who would ask more pointed questions about the worst concerns on my wellness quiz for that day. I would need to do this each and every time I had a clinic appointment (not a treatment), but the neat thing about it was that I was able to compare how I was doing each time against my past visits, via a printed bar graph.
We were then sent to the lab for a round of blood tests. They needed a starting baseline to get an idea of my current general health, and also to get an idea of whether or not I’d even be able to tolerate chemotherapy (were my kidneys functioning normally, for example). I had a lovely new PICC line already inserted from the cancer centre in Barrie, but noooo, they couldn’t use it for any of my tests so I became a pin cushion. The PICC line had been inserted because it would be used to administer my chemotherapy drugs intravenously, and I had hoped that it could also be used to draw blood but the lab wouldn’t touch it. They said only qualified nurses could draw blood from the PICC line.
First doctor I met was the Chemo Oncologist. We discussed my blood work results and medical history. “Do you smoke?” “No.” “Ever smoked?” No never.” “Hmmm.” He couldn’t tell me exactly what the chemo treatment would be yet at that time because he had to base his decision on what the radiation treatment would be. This is because the chemotherapy affects active cells, and since radiation is targeted at the cancer cells and those cells become more active, the chemo affects the more active bad cells and not so much the healthy, less active cells. Chemotherapy and radiation therapy work hand in hand. It does explain why people lose hair during chemo treatments: hair cells are very active and therefore would be targeted by the chemo drugs.
The Chemo Oncologist informed me that the treatment would likely be different from what Barrie had planned. I actually had a dual PICC line because my original chemo treatment was going to consist of two chemo drugs, of which one would be attached for the entire treatment duration and would be continually pumped in. It would have been refilled weekly when the other chemo drug would be administered. At Sunnybrook, they would only need a single PICC line because I would not be getting a chemo pump. Barrie was opting for low dose cisplatin, and Sunnybrook was choosing high dose instead.
Next I met with one of the radiation team nurses and an intern, who asked me more questions about my medical history. “Do you smoke?” “No.” “Ever smoked?” No never.” “Hmmm.”
The Radiation Oncologist who would head my oncology team entered the room. Accompanying him was the Microsurgeon. I was instantly impressed at how much positivity and confidence they exuded. They asked more questions. “Do you smoke?” “No.” “Ever smoked?” No never.” “Hmmm.” They felt my neck and collarbone, and checked my throat. Another intern entered the room. Now there were 5 medical professionals, plus Seaghan and I.
After the quick exam, they decided to use a scope to look down my throat and off we went, all 7 of us, to another room. They sat me down in a chair with my back to the monitor — I guess they didn’t want me to see the tumour while they were looking at it in case I panicked and moved. They said that they were a teaching hospital, and would I mind if more medical students joined us. “Sure,” I said. Very quickly a few more popped in, plus a nurse. By this time the room was quite crowded and Seaghan got squeezed to the back.
And so we proceeded with the scope procedure. Now I’ve had this done once before so I knew what to expect but this time they didn’t use any kind of freezing spray to numb the back of my throat. It was uncomfortable as they inserted it through the nose and guided it down the back of my throat, and it made me want to gag to say the least, and my hands had a death grip on the arms of the chair. It was curious watching them watching me. The doctors asked me to make sounds like “aaah” and “eeeeee” and puff out my cheeks, and all the interns said “aaaaahh” and “ooohhh” in unison. It was funny — the only funny part about it.
“You sure you never smoked?” “Yes I’m sure.” “Hmmm.”
Off we go back to the first room, where we meet with the Dieticians, more questions. “Do you smoke?” “No.” “Ever smoked?” No never.” “Hmmm.” They recommended that I get a feeding tube since my esophagus was already narrowed and would likely become more inflamed as treatment progressed, which means eating would become nearly impossible (and actually, it did close up.) I agreed to the procedure, and left it to the dieticians to make the arrangements to have this procedure done. She then determined my caloric and protein requirements, showed us what the feeding tube would look like after the procedure, and we went over the different liquid meal replacement options. She was amazed that, even though I was having difficulty swallowing, I was maintaining my weight and eating relatively well.
I think we also met with the Social Worker briefly to see if we needed any assistance from her regarding finances, emotional support, and the like. By this time I was starting to feel overwhelmed, and my memory may be a bit hazy on this.
We visited the administrative offices to get a user login ID and password for mychart.ca, Sunnybrook’s online personal health record. Here I could view test results, see upcoming appointments, and read the doctors’ briefs. (When I returned home and logged in for the first time, I was pleasantly surprised to read that I was called “delightful” by the doctors.)
Next, I was sent downstairs to preplanning. They managed to fit me into their busy schedule because the Oncologist wanted this done as quickly as possible. He was hoping that they could starting treatment the following week.
Last words were from the Radiation Oncologist and the Microsurgeon. The Microsurgeon told me that the tumour wasn’t exactly inoperable, but it would mean removing my voice box. They would determine if surgery would be needed after treatment had ended and the tumour was reduced in size. I was informed that the tumour was very large and that this would be a very tough journey for me, but they were going for the cure. I said “bring it on! let’s get this show started!” Finally, I was going to get the help I needed. Glass of wine? Yes Please!
—Sandi
Next: My first radiation treatment.