Becky’s blog: The CBC editionSeptember 2, 2014
I am an avid listener of the CBC. Oftentimes when I am puttering around the house, wanting something on in the background, I’ll tune into Radio One and go about my day. Yesterday was a really great radio day with two interviews worth mentioning.
First there was a really great interview with George Saint-Pierre, the MMA fighter, during which he spoke of challenges he has faced, focusing on the mental game he used to overcome them and get to where he is today. During this interview there were three points that really stood out:
1) Courage is not the absence of fear.
2) Your mind can dictate your body, but your body can dictate your mind.
3) You can use this approach for anything (asking your boss for a raise, or asking someone out).
I offer these points as food for thought; I’m not going to expand on my own thoughts because I’d like to focus more on the second interview.
The season premiere of “White Coat, Black Art” interviewed Dr. Nikhil Joshi. At age 27, Joshi, a doctor-in-training at Memorial University in St. John’s Newfoundland, was diagnosed with Hodgkin’s Lymphoma at Stage 2A. This is same diagnosis that I had received at 17 while preparing for my final year of high school. His story and his inspirations felt incredibly familiar.
He had found a lump in his neck. Not wanting to overreact, as a medical student can be prone to do, he waited a few months before seeking the advice of his father, a doctor. He knew there was something wrong when he saw the look of being scared in his father’s eyes. When his father felt the lump, he was told the last time he had felt a lump like that it had been lymphoma. That fear he had seen, was a fear of cancer. Joshi talked about fear and how it can be a knee-jerk reaction that rules your life, but you have to live with the fact that you’ll miss a thing here or there, or push something a little longer than you should.
The first time I saw that look in my parents, I had just shown them the lump in my armpit. I was naive about what it might be, but they knew the possibility. In my memory, this look became more severe with each appointment leading to my diagnosis. When I received my diagnosis a few weeks later, it was my parents that explained that lymphoma meant cancer. I finally started to understand the expressions they’d worn.
I remember being down on myself for not asking about my lump sooner, for not knowing there had been something wrong, fearing that something like this would happen again and I wouldn’t catch it in time — a fear that stuck around for a while. The day that I received my 10-year clear, I was told that I would no longer be scheduled for check-ups. I was declared cancer-free, and instead of being happy, I was scared. I had lost my safety net. I was left free-falling with no idea of when or how I might land. Joshi had made a good point, and it’s one that I still struggle with on occasion: You have to trust yourself and have compassion for your choices. I might miss something, or put off a problem longer than necessary but I need to reconcile those feelings.
He discussed that doctors tend to focus on medical issues, often forgetting about the practical/lifestyle ramifications of the treatment. He acknowledged the tension between extending life and quality of life. Sometimes it is a trade-off; this is the reason that sometimes patients have difficulty with rules, and why, in his own practice, he chooses to discuss risks and options instead of giving out rules. He broke the rules in his own cancer experience and risked his compromised immune system by eating take-out pizza. He understands the need to search for freedom and normalcy saying that rule breaking is important, but it’s important to recognize the difference between breaking a rule to improve quality of life and breaking a rule due to petulance. In my case, it had began as an improvement to my perceived quality of life, but I let myself get carried away and started pushing the boundary beyond reasonable means. I feel fortunate that I did not find worse consequences for my actions.
I wasn’t given a list of things not to do. I had been told to be cautious of my weakened immune system, and I was prescribed steroid injections (1 a day, Monday through Friday) to help my white blood cell count that had dropped a few times causing postponed chemotherapy treatments.
In my own search for normalcy and freedom, I learned how to do the injections myself. At first, it was new and interesting. I almost enjoyed it. After a few weeks, I began to feel nauseated in anticipation of administering my shot. I began to skip about one a week. When I still felt good and hadn’t seen a drop in my white count, I began skipping more shots, taking only two or three each week. It was at that point that my count dropped again and I was prescribed more shots. So, I started following my original prescription.
Joshi recalled feeling really confident and strong when he began chemotherapy, but it got harder as time went on. He spoke of a little voice in his head that said, “Let’s just stop this now, please.” He said he was okay if that little person inside of him was not okay that day. He just didn’t want that experience to limit him, or haunt him after it was over. He could go through chemo once, but didn’t know if he could do it again.
I remember thinking, “If I am ever diagnosed again, I don’t think I’d opt to go through chemo.” It was the beginning of a new year. I was supposed to finish chemotherapy in December, but there hadn’t been enough progress. I had two months left. I was tired. I had very little energy, I couldn’t focus on school work. I wasn’t able to spend much time with friends. I was sad for myself. I felt isolated and scared that maybe treatment wouldn’t work after all. That little voice had found a very comfortable home in my head. It stayed with me for years. I had gotten so used to it being there that it was difficult to recognize as something other than myself. It was difficult to change that thinking, and it is still something that will pop up for me from time to time.
Joshi also addressed the insecurity that lives within us. Well after treatment we can feel that people perceive us to be weak or wounded. Both he and I were never treated as though we were fragile, yet we felt as though we were. These feelings are largely self-imposed (it is worth mentioning that pandering and discrimination does happen — it is not all in our heads).
Over the years, I have learned ways to help quell these rumblings. Exercise, art, and sharing in my experience with others have had the greatest impact. It is to that last point that Joshi’s final thoughts speak.
He had mentioned earlier in his interview that sometimes, as cancer patients, it seems we are not the people most affected by our diagnosis. Treatments are patient-centered, but cancer affects those that are closest to us as well. In his closing he says that cancer is a small part of our journey. It’s really about a person who has misfortune, and realistically we all have misfortune. Let’s talk about it. Let’s talk about what is wrong and what good things can happen when we’re open with each other. We’re all in this together. We have to give a shit about one another. We have to try and talk about these things that are going on.
I think he’s right. In my own experiences my best support and most meaningful interactions have come from sharing experiences with others.
“It’s not my fault. It happened to me and it sucks, but that’s okay, let’s talk about it.”
Listen: “Journey to the other side of the gurney“