Dear Doctor,
My name is Jessica, I am one of your patients. On December 22nd of last year I was diagnosed with follicular lymphoma. Dr. robichaud, who was very kind and compassionate towards me told me he didn't know many details of what this meant for me, but that he would would refer Me to the best doctor he knew.
This is when I was referred to you.
As you can imagine, I spent 2 months googling "follicular lymphoma" before seeing you for the first time on February 5th. I received a variety of information that ranged from "the median age of survival of follicular lymphoma is 8-10 years" to "follicular lymphoma is most common in men over the age of 60" to "sometimes it goes away on it's own". I didn't understand any of it. I'm not old? What does this mean for me?
During our first visit your nurse asked me lots of questions and was very kind and attentive. You came in shortly after. I was told a few things at this point; that there were other swollen lymph nodes in my abdomen, but it was normal, that this was very common, that we would do "watch and wait" that I should call if one of my lymph nodes swelled within a matter of days, I started getting night sweats, I rapidly lost weight or I was extremely fatigued. I was also told "if you have anything call my office, I'd rather you come see me if you are unsure and want to put your mind at ease" this took about 5-10 minutes and then there I was. Relieved but still confused a little. I still had no more information about what this meant for me, but I had something to hang on to.
When all of a sudden at the end of February I felt 2 lymph nodes swell in my neck in a matter of a week, I started getting a bit nervous.
I first researched my lymphatic system to make sure these were lymph nodes, and I found several diagrams which showed lymph nodes in these areas. I waited 2 weeks. I called- I was told to wait another 2 weeks and if they weren't gone to call back. I waited 3 weeks and called back- I was told to come in the following week, April 10th.
Before I talk about the second visit I want you to understand the amount of effort I need to put out to make it to a doctors appointment. First of all I need a sitter- I have 2 kids under 5 and everyone I know works during the day. Most times I have to pay someone. I then have to wake up extra early to pack bags for the kids, snacks, diapers etc and have everyone fed, clean and out the door for the drive to Moncton (we live in Hillsborough). Drop everyone off, give kisses and make it back to my car early enough to stop and get change for parking and hopefully not have to wait an hour for parking. After spending 2 hours at the clinic I get to pick up children- find somewhere for lunch (cause everyone's having a breakdown) try and make it back home early enough so I can clean up and leave for work in Moncton again at 3:30. Going to a doctors appointment takes a lot of my time, money and energy and so I don't take these things lightly.
So when my turn came, your nurse asked me most of the same questions and gave the same amount of kindness and attention before you came in. The first thing you said as you walked from the door to me, sitting in my chair was "so, you've noticed some swollen lymph nodes, come up on the bed and I'll examine them" as you put the chart down on the counter and walked back to me sitting on the bed you said "what did you understand about what I told you the last time you were here?"
At this moment my heart stopped. I felt unable to speak, but you were waiting for a response, and I don't remember what I said. Was I being chastised like a child? Why was this sentence so condescending?
When you examined my neck, you told me the lump on the right of my chin was my Adam's apple. You told me that there were no lymph nodes in this part of my neck. You then felt the smaller one under my chin and proceeded to advise me that this would happen, my lymph nodes would swell and it was normal. That the only time i should call is when they get very big. You told me that I didn't need treatment and explained to me again why I didn't need treatment. When I asked how long before most people needed treatment you said that 70% of your patients never need it. At this point, I couldn't say much. It was so condescending, you seemed so annoyed with me. I've never felt more stupid in my entire life.
It took everything inside me not to cry in front of you, and when you left the room I did cry. I worried that the people in the waiting room would notice. I worried That my children would notice my red face when I picked them up. So I quickly pulled myself together and pushed my tears aside for a later time and went on about my day.
That question you asked me- "what did you understand about what I told you the last time you were here"
Obviously i understood nothing, I still understand nothing. I have no idea what to do, or think or look for anymore.
This is why I feel I need to find another oncologist. Not because I want a second opinion, that I feel I need treatment or that I'm some kind of convoluted hypochondriac.
Because I simply want someone who will help me understand, take the time to answer my questions but mostly be kind to me a respect me as a person.
I just hope you remember that every patient you meet is deserving of your time and respect- they may not be doctors but they're time is as valuable as yours, and no matter how big or small their cancer is they are still scared and looking to you for answers.
You are not defined by your profession. Doctors can be replaced- what defines people is their ability for kindness, compassion and empathy.
Sincerely,
Jessica
