How I Changed Oncologists: A guide to patient rights in New Brunswick

Ever meet a doctor you didn't like?

How about a doctor who didn't like you?

Usually it happens like this:

You feel something out of the ordinary, a bump, a lump a rash a pain. You see your family doctor, who orders a series of tests, and then after pinpointing the problem, then refers you to a specialist.

Sometimes, it takes a long time before you see the specialist, sometimes it doesn't.

Sometimes things go well, your specialist is kind and informative, and together you decide on a course of treatment and you start your road to recovery.

Sometimes things do not go well.

This is what happened to me. I was referred to one of the top oncologists in this city, and although I did not distrust his medical expertise, his bedside manner left something to be desired, as I described in an earlier post.


But what can we do? We live with a public health care system. It takes SOOO long to see anyone in the first place?

Well guess what, we as New Brunswick's have rights after all!


Let's start with our basic patient rights, as defined by the  Public Legal Education and Information Service of New Brunswick:

With some exceptions, you have the right to:

• be informed by health care professionals about the healthcare treatment;
• be informed about the usual risks, side effects and benefits of the health care treatment;
• a second opinion;
• refuse health care treatment;
• provide informed and voluntary consent to health care treatment;
• professional health care services covered by Medicare;
• choose a doctor who is willing to accept you as a patient;
• privacy; and,
• confidential handling of your health care situation. (Your health care professional may share essential information with those professionals directly involved in your health care.)

So I, as a New Brunswicker not only have the right to a second opinion, I also have the right to chose a doctor who is willing to accept me as a patient.

This is when I started looking for a new Hematologist, knowing that my current doctor worked closely with others at the Beausejour Health Network, I realized I may have to change health networks.

I researched doctors in the Horizon health network, and with the help of many online reviews (and a little FB stalking ) I found a haematologist I wanted to be referred to.

The next step was to see my family doctor to ask for the referral.

But let's not stop there

Surely it wasn't right, being treated without kindness and respect? Wouldn't this doctor simply keep treating people like this if no one ever says anything?

So, I started looking deeper and found the Code of Ethics for the College of Physicians and Surgeons of New Brunswick.

Under Fundamental Responsibilities we find:

1. Consider first the well-being of the patient. The physician should consider the well-being of other patients, of society and of colleagues, as well as his/her own well-being, but that of the patient being treated at the time must be the physician's primary concern.
   
   
2. Practise the profession of medicine in a manner that treats the patient with dignity and as a person worthy of respect. Respect for persons is a fundamental principle of medical ethics; it excludes not only exploitation and discrimination but also discourteous and insensitive behaviour.
   

This means you, and I and every other New Brunswicker has the right to be treated with DIGNITY and RESPECT.

Under Communication, Decision Making and Consent we find

1. Provide your patients with the information they need to make informed decisions about their medical care, and answer their questions to the best of your abilityThe physician is obligated, as part of the process of informed consent, to provide the patient with whatever information will, from the patient's perspective, have a bearing on his/her medical care decision-making.
2. Make every reasonable effort to communicate with your patients in such a way that information exchanged is understood.Informed consent requires good communication.

So I sent my complaint letter, to the doctor in question. I also carbon copied my family physician, the director of the oncology centre, and the College of Physicians and Surgeons of New Brunswick.

Who knows if it made a difference, but at least I played my part.


There are a lot more places these links can bring you, but if you only take one thing from this it's always important to remember your 4 fundamental rights as a patient in New Brunswick:

DIGNITY

RESPECT

INFORMATION

COMMUNICATION

People are not defined by their profession. What defines people is their ability for kindness, compassion and empathy

A Letter to a Doctor

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 

So when are we going for coffee?

I wasn't sure if I was going to post anything about my cancer on FB. I really didn't want to seek attention or make a big deal out if this, but at the same time there were so many people I wanted ro inform. People I have known for a long time that I have loved and still love who I know would want to know what's going on with me.

So I took the plunge and I posted a link to my blog on FB, I wasn't really sure why to expect, but I certainly didn't expect what happened. 

I got an outpouring of support from so many people, people who were hidden in all the tiny corners of my life. I received words of encouragement from almost every one including old friends, new friends, old bosses, old coworkers and old schoolmates.

The best example of this is my recent discovery in my mailbox. A group of old girl friends Of mine who live in Nova Scotia decided to send me what is probably the best piece of mail I have ever gotten. 

For some context- back in 1999  a few girls from NS and a few girls from NB al lived together in one room of a shitty 2 bedroom apartment in Banff. We were all 18 and 19 years and we spent all our money on booze and never had anything to eat. Eventually we came home, and kept in touch. Some of us have moved back out west, others stayed out east, most of us (all of us?) had babies and we all live fairly normal lives now.

When a few of the girls heard about my cancer, they got together and made me this:

We're sending you a little angel your way

To wath over you each and everyday

Your friends in Nova Scotia are wishing you luck

And sending their love 

Because cancer sucks

To often we say "oh we should get together" and "I haven't seen her/him in so long I should call them" but we don't. 

We remember people from our past fondly, remember how they made us feel but we just don't take the time from our daily lives to re-connect.

This whole experience has made me realize how important it is to re-connect with people and make them realize what they mean to me, and the impact they have had in my life. 

My new goal is to re-connect with people as much as possible, taking every opportunity I have to do so. 

I think everyone should try and re-connect with an old friend. You may be surprised at how easy and rewarding it is :) 

So, when are we going for coffee? 

Trust Issues

So I had a bit of a moment last week. 

After working a late shift I woke up the next day with a pain in my neck, on the same side as my biopsy. The pain went from my shoulder to my jaw. After about a day I panicked, could my lymph nodes be swelling? Are they getting bigger?

I called my oncologist office, explained the pain to the secretary and waited for my oncologist to call back.

During this time I took a nap – and when I woke up the pain was completely GONE. You can imagine how stupid I felt for freaking out… really? I called my oncologist because of a mild neck pain?

LUCKILY the secretary left a message and I did not have to actually talk to her, and tell her “Ugh yeah, I took a nap and it went away”

This episode was a major source of anxiety for me, and after reviewing it in my mind I realized one thing: I no longer trusted my body.

Ever have those moments? Where you have a slight cough, a strange rash, a headache that won’t go away and after spending some time on the internet you decide it’s OBVIOUSLY ebola/aids/brain tumor.

BUT….. you know it’s nothing, really in the back of your mind, you know it will go away. Just like EVERYTHING else before it.

That’s it, this last time it wasn’t nothing. My body let me down, it was supposed to be some infection, my imagination, something NORMAL. I was supposed to get a prescription for some antibiotics, a pat on the back and a boot out the door.

After all these years of “nothings” my body finally gave in and came up with “something”. So what’s to say that all these little things happening aren’t related to my lymphoma?

It’s hard to say, I guess the next few months (years?) will be a test for me, I’ll have to make these decisions often and I’m really not good at that. I’m just really not good at having cancer.

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The Oncology center

Thursday was my first visit to the oncology center. I was very surprised that it seemed to run as a separate entity from the hospital and it's very new bright and calm. The waiting area has nice new comfy chairs, big windows and a calm atmosphere. 

The one thing I noticed, as I sat there waiting for my appointment was that everyone waiting was OLD, like 60+. I really didn't feel like I belonged there. 

 

When my turn came Louise, the dr.'s nurse asked me a series if questions and took my weight and height. She was very very very nice, and made me feel very comfortable.

When doctor Whitlock came in I was very nervous, he was very nice and explained everything to me clearly. 

What he said: it is not uncommon for people with this type of lymphoma to have it in other areas of the body, they did find some in areas in my pelvis and stomach.

 What does this mean? Well not much, it means it's still there, but growing slowly. 

He also told me that prognosis for people who start chemo early vs those who waited until it was necessary was the same. The thing is that once you do chemo, the second time it has to be a stronger chemo. 

This being said we are opting for a "watch and wait" approach. I will watch my symptoms closely, and have a CT scan every 6 months. 

How do I feel about this?

Well at first I was a little upset, it all seemed very anti-climactic. How could I just wait around to take care of this?

However the more I thought about it the more relieved I was. It's like in getting more time, time to take care of myself physically, emotionally and financially.

I can take this time and get ready- prepare myself for the day when I have to have chemo. 

My plan is to concentrate of clean eating, exersize and spending time with family.

I'll keep this blog updated with how I feel, what's going on and any other news regarding my health. ;) 

Montreal

I had to go to Montreal for work last week.

Although I've been tired lately, possibly due to my low iron and b-12, I have been waiting for this training for a long time.

It was a really great week, I got to see some old friends, meet some new ones and experience big city life for a little while :)

I missed the kids a lot, and I'm sure they missed me.

By Wednesday I was so tired I could hardly leave the hotel at night lol possibly because I was coming down with a cold that was circulating my coworkers over the week. By Thursday night I was officially sick, and Friday was horrible.

If I hadn't have checked out of my room I would have called in sick, but I was officially homeless and had no where to go but work.

Needless to say a pile of drugs got me throught the day and on the flight home. I officially slept for 2 days and I'm finally feeling better today, 5 days later, but I'm still really tired. I have found that in order to make it through the day I have to take 2x my iron and b-12 pills.

Hopefully I'll get my energy back soon :)

CT scan #2

Looks like something from the Star Ship Enterprise doesn't it?

For those of you who have never had a CT scan before it is very uneventful. It doesn't hurt, it moves a little and takes no time at all.

The prep however is hard. I had to drink a wonderful barium solution- 4 cups of gross substance, 1 cup every half hour 2 hours before your scan.

I was all prepared- I mixed my solution the night before, divided into 4 plastic bottles I could bring with me and set the timer on my phone.

I was not prepared for the taste- it seemed harmless at first but by drink #4 I wanted to puke :/

 

I was also not happy about being naked with only 2 Johnny shirts on my socks, in a cold public waiting room.

But once I was in it went fairly fast, I was also given an IV with a dye, asked to hold the bar over my head and zipped in and out of the machine like a pro.

Now all we do is wait for the results.

Don't panic! It's just cancer!

So, now what? How do I tell people?

I debated on doing something like this -

But that may not be the best idea. 

So I called my parents, and eventually told everyone. It's not easy, it feels a bit like you're disapointing people, even though it's not your fault.

What I wanted to avoid was secrecy. I want everything out in the open, this is life, it happens it sucks - let's deal with it together.

Schrödinger opens his box

On December 22nd, I went in to meet dr. Robichaud for the results of my biopsy.

I was told that they had found grade1-2 follicular lymphoma (non - Hodgkins). He gave me a little bit of information, mostly that it is easy to treat and sometimes requires no treatment at all.

He wrote it down for me so I could look it up, and advised me I'd have another scan to see if the lymphoma was in other parts of my body, before seeing an oncologist..

There is loads of information about follicular lymphoma online, I have added some links below for those looking for more information, much better than me parephrasing it all :))

lymphoma research fondation

Canadian cancer society

NHL Cyber Family

Biopsy #2

The second biopsy was relatively easy.

I think the thought of having someone slice open your neck while you're awake is worst than the actual price due.

Dr. Robichaud did an amazing job, it took about 30 minutes was painless and all we did was chat the whole time.

The intern, Isabelle, held my hand and made me feel comfortable.

It was so easy I even went to Costco after!!

THE WORST PART- ripping off the band aid after 5 days!!!

ENT

My GP then referred me to the next step- an ENT. She knew I was anxious about the possibility of cancer and that my emotions were fragile. She decided to refer me to dr. Robichaud and she put a "rush" on it so to speak to help me get answers quickly.

When I met with dr. Robichaud he was very kind, he explained everything clearly and took a biopsy of my lymph node using a rather large looking needle. (Yes he sucked fluid out of my neck, :/) he also cut a couple of spots off my tonsils to check for anything. He mentioned that he may want to remove my tonsils but he would see what the results said. He advised me his secretary would make an appointment for me in 2 weeks to return. (His secretary was very nice and professional and punctual, I was impressed)

When I returned, I was nervous, I thought someone would finally open the box. But the results were incoclusive.

At this point he gave me a couple options- the chances of it being cancer were very unlikely, we could watch and wait - or have a biopsy which would involve a minor surgery where he would remove a piece of the lymph node or further testing.

He seemed to be asking me what I wanted to do, but he was also leaning towards the biopsy and I agreed.

We agreed on the biopsy which would happen the following week- and a results appointment 2 weeks after that (which brought us into the week of Christmas)

In the begining, there was a lump...

In the begging- there was a lump.

So in the winter of 2013/2014 I first felt a lump in the back of my neck, one of my lymph nodes was swollen. It wasn't very big and after seeing my doctor she told me not to worry, I was probably fighting and infection and if it got bigger or was still there in 8 months to return to see her.

It was probably my fault that I didn't return when I felt the second lump, I just didn't want to bother her, and honestly bother myself with another useless appointment.

The thing is the second lump was bigger, and it worried me. By September  it was still there and I figured it was long enough I made an appointment to see my GP.

Let me point out here that my GP is amazing. She explained that at my age the likelihood of finding lymphoma was low, she was going to do all the tests just to make sure.

Starting with a blood test and an ultrasound of the mass.

My blood tests returned fine, other than the fact that my iron and b-12 is low. This is common after having a baby (explains my cravings for dirt while I was pregnant!)

The ultrasound showed that my lymph node was 2.2cm. Generally health care professionals do now want to see it bigger than 1.5. So at this point my GP sent me for a CT scan and referred me to a ENT specialist.

My anxiety at this point was high, I was scared of the unknown, I wasn't sleeping well and I was easily brought to tears.

It's hard not knowing what you're dealing with, was I going to die next week? Was it all just some stupid infection? Google doesn't help much at this point.....

During this whole process I truly felt like Schrödinger's cat - I both had cancer and did not all at the same
Time. I just wanted someone to open the damned box!

So what cat I say about CT scan #1, it was very easy and localized so not very long. I was surprised by the tech. He was about my age, normal looking, he was very soft and kind. When takings arm and inserting the Iv he was very gentle. He asked me "so why are we doing this today" and I explained why, how long I had the lump etc. he seemed to go quiet after that. I think it surprises people when someone of my age (and their age) comes face to face with this reality. The ultrasound tech had a similar reaction when I explained it to her.

I kind of knew from their reactions that this wasn't something they encountered everyday.

Next step was seeing the ENT.

2014 - what's supposed to happen, and what really happens

2014 was supposed to be my year, the year I got that promotion I was after, the year I lost all the baby weight, the year we sold our house and moved closer to the city.

But as a friend and colleague once told me "life doesn't always turn out the way we planned"

On December 22nd 2014 I hadn't gotten that promotion, I hadn't lost the baby weight, we hadn't sold our house or moved, and I was told that day that at the age of 33, I had cancer.

It's obvious life is throwing me a curve ball - "get your priorities straight" is the message here.

This blog is about my journey through cancer, re-setting my priorities and of course to give updates to my friends and family on what's going on. I'll try to be funny,
Not to mellow dramatic but mostly honest about what's happening and how I feel.