While we gear up for a fresh school season next Tuesday, I am gearing up for the the beginning of a beautiful relationship with a princess: Princess Margaret that is – for the clinical trial that will prolong my life.
Last week, my dear friend Milena and I had a road trip to PMH where my trials nurse orchestrated four tests that are required to be admitted to the study. Four tests, one day, three hospitals. There are five hospitals that make up the blessed and absolutely stellar University Health Network. Most of these hospitals are within a one block radius of one another and Milena and I became astute at crossing University Avenue with ease and checking out the food trucks along the way.
Within five hours, I had a brain MRI (to determine any brain metastases – which there are none), a CT scan (checking the disease progression in my lungs, lymph nodes and anything in the organs), a heart scan (a nuclear medicine test that ensures the heart is functioning within normal range) and various blood tests. Here is what is so magical and other-worldly about this North Star of Canada’s healthcare system: it was completely patient-focused and I witnessed love, compassion and little perks that make the most of a bad situation.
I would like to make a disclaimer: my five years at Juravinski were all I knew and you don’t know what you don’t know, so they say. There are good people at JCC. Hardworking, dedicated staff who are really trying to make life with cancer better. The goal of my writing is to share the patient’s perspective in our broken Ontario healthcare system including the good, the bad, and the ugly. Everything I will share about PMH and its affiliates is through the same lens, however you will see that the view is so very different. I will present facts and real, honest experiences and knowledge that I have been fortunate to gather over so many years in Hamilton hospitals. Please take what you wish from my writing and believe me when I say that I am grateful for the care I received. But my beloved Hamilton, we can do a lot better.
Case in point: when you have a CT scan in any Hamilton hospital (I have had a scan in each one), you have an intravenous drip set up in your arm and after the first few minutes of imaging, you are infused with a contrast dye that lights up your solar plexus. Your arms are above your head for the duration of the test. In Hamilton, technicians in another room activate the contrast dye injection via a computer. Then more images are snapped and staff come in and escort you to a waiting area where a nurse removes your IV. Then, you find your way out from there. It’s all business, there’s no small talk and even on a day where I had had a small car accident in the hospital parking lot right before my test and was a little ‘less than’ myself and was crying in the IV room, there was little compassion or understanding.
At PMH, I had a lovely gentleman who told me that he was needed up in the O.R. for an angiogram but felt that he could fit me in before he went up because he wasn’t sure how long he would be. Point number one: staff talk to you honestly and openly and manage your expectations. While in the scan, when the contrast dye was injected, this technician came into the room, injected it and then he held my hands and rubbed them gently as the dye went in and for about a minute afterward, asking me if I was feeling okay (because the dye burns your insides like a shot of 40 proof whiskey and makes you quite certain that you have peed your pants). He came in after all was said and done, removed my IV and escorted me to the waiting room. It was a beautiful thing. I will remember him always and hope to see him next time. One person, from start to finish and such compassion that I welled with happy tears.
Here is another example. Have you ever had a test where you have to wear a hospital gown? Awkward as ass right (literally)? Which way does the gown go? Tied in the front or back? We all have a story of us or some poor patient who simply couldn’t win the fight with their gown and ended up mooning the waiting room. At PMH, they not only have a brand new gown design that is Rachel-proof, but they also give you pants. Flannel pants that give you just a bit more dignity as you wander the halls to your cold examination table that couldn’t even fit Kate Moss comfortably. But the pants! I actually yelled out to the technician when he took me to the change room, “PANTS? Did you say pants? For me?”. It really doesn’t take much. There were many small things over the course of the day that added up to a seamless, effortless and dignified experience.
Today I can tell you that my CT results were less than desirable. All of my results come to me in the form of an email alert and then I log into my patient portal and read everything myself. This is incredibly empowering.
I have not had treatment for six short weeks since we determined the medications were not working and I had to start the process of qualifying for this clinical trial. Within these six weeks, every single tumour in my lungs and lymph nodes (over 40 of these suckers), has increased in size, some by a whole centimetre. That’s aggressive and certainly a blow to my positive perspective.
I knew at the moment of reading my results that I was not going to wait another minute to take action. I emailed my healthcare team at PMH and I had a response within three hours at 8:30 pm while my nurse was likely trying to enjoy her evening but took the time to reassure me that they would review everything the next day and get back to me with a plan (I had not been confirmed for the clinical trial at this time).
At 7pm the next evening, my nurse phoned to tell me that I have been approved for the trial and that she would do everything in her power to fit me into chemotherapy next week. The trial is a double blind study with two thirds of patients receiving the trial drug, along with two other drugs that I am guaranteed to receive. 16 hours after our phone call, I had all of my chemo dates scheduled for the next two months, including my start date next week. This is a miracle. Clinical trial teams take precedence and can make things happen quickly. I am grateful that I am in a place where I can speak openly, know that I am being heard and see almost immediate outcomes. This my friends, is the opposite in our fair city. Patients do not have a voice in many cases. I experienced this too many times to count. You are dismissed and placated, sometimes ignored, even when serious or time sensitive decisions have to be made.
Right before I had my first consult with the trials team at PMH, my JCC doctor phoned me at home. While I am thankful that she ultimately put me on the road to PMH, she told me, and I quote, “You need to show these people that you can keep it together. Don’t get emotional. And they don’t like a lot of questions.” I jokingly said, “Are you telling me I’m high maintenance?” She responded with “I have patients that are way more high maintenance than you and they have made it into trials.”
The lesson is that as patients or caregivers, you have to advocate for yourself, push boundaries when needed and ask tough questions. Maneuvering the system takes time, patience and a lot of balancing. One day there is good news and you feel confident in your plan and actually don’t think about your diagnosis for a few hours. The next, you are smacked in the face with news of disease progression which swells the thoughts of the reality that while you are not going to die today, you will always be in a state towards it (and yes, I know EVERYONE is, but it’s not the same thing). You learn to live with major uncertainty.
The disparities between these hospital system experiences are not all about funding or politics. I’m sure there’s a bit of that at play but how hard is it to hold a patient’s hand, call them with test results in a timely manner or put a cap on parking? These are all within a hospital’s control but it comes down to the almighty dollar. It’s cheaper to have a computer inject a dye than a human walking into the room, flannel pants cost money, doctors are so overworked you’re lucky if you get a call, and the hospitals rely on parking revenue at the hands of the most fragile (don’t get me started on the parking enforcement vultures who hover around metre paid cars at JCC).
I do know this for sure: there is no shame in not being okay with the often unfair and life-altering world of cancer. No one is less than their whole self while battling the see-saw of emotions and facts that can come at anytime. This is not my whole story, but it is being written as I live through each day and face how the story will end. A terminal illness becomes a houseguest who never leaves. They are always with you. Like Goldie Hawn in Housesitter, sometimes you just have to make the most of it, do whatever you can to survive and truly dance like no one is watching.
I believe that we can always do better. Why not start with love, compassion, kindness, and a whole lot of flannel pants for everyone. Can I get an Amen?