While I am clearly not a poet, I hope you can feel my pain and frustration. These women were my friends. All five of us were diagnosed under the age of 50. For the five of us, there are thousands of others in our situation. Our current Canadian Breast Cancer Screening guidelines are failing us, our families and our friends. I will continue to use my story to advocate for better screening guidelines in Canada. I will fight until I can no longer.
I was with my husband when I got the news from my General Practitioner (GP) doctor that I had stage 3 breast cancer. He referred me to the Calgary Breast Health Program, where I would meet with a surgeon and later, an oncologist. I did not know anything about breast cancer so before leaving, I asked my GP for a copy of my all of my results leading up to the diagnosis.
When the Breast Health Program called a few days later, an appointment was scheduled for the following week. I asked them what I should expect at my first appointment. I was told that I would meet my surgeon, who would discuss and agree on a treatment plan. Now that I knew what the agenda was, learned as much as I could about my diagnosis. I had about one week to research and understand as much as I could about my diagnosis and potential treatment. That included making sure I understood everything that was in my mammogram, ultrasound and biopsy reports. I only used reputable medical sources, cancer organizations or received information from individuals in the medical field from within my network to do my research.
Once I had a better understanding of my diagnosis. Then, I looked up typical treatment protocols for the type of cancer I had been diagnosed with. While I read protocols from other Canadian provinces, I ultimately made sure I had read every breast cancer document available on the Alberta Health Services Cancer Guidelines site. Having a ‘pre-med’ university background helped me with my understanding of a lot of the materials, and I found that some of the other Canadian jurisdictions presented the information in a more patient-friendly way. I found the Alberta site to be quite technical at times and geared more towards the physician than the patient. As I went along, I made sure I noted any questions I had.
By the time I met (accompanied by my husband for moral support) with my surgeon and oncologist, I was prepared for our conversations. I understood what she were telling me and I wasn’t overwhelmed with the information they were giving me. Because I was had done my research, I was able to ask well-informed questions, and I referred back to the questions I had jotted down to make sure I hadn’t missed anything. As a result, I was able to confidently make a decision on my treatment plan without second-guessing myself.
Lesson
For my appointments, like in business, if you are being invited to a meeting, ask for expected outcomes of the meeting. Ask if pre-meeting documentation is available (if applicable) and prepare yourself accordingly. If you are the meeting leader, send out an agenda and lay out the expectations of the meeting. If pre-work is required, ask for it at the time the meeting is set up. Too many times over the course of my career have I have found meetings to be unproductive because expectations weren’t set, data wasn’t available and subsequent meetings were then required.
Scenario 2
Once treatments started, I had many routine appointments for bloodwork, cancer treatments and follow-up appointments with my oncologist. Obvious patterns quickly emerged with each appointment type. Nurses always asked the same questions. So, instead of waiting for the nurse to ask them, I come in prepared with the information typed up. While that sounds like work for me, it actually isn’t. For example, I have to report all my side-effects, so I simply log them in the calendar notes for that specific appointment. Similarly, I do the same with all the medications I take. And, usually I always have something that I need from my doctor or nurse, so I have a list of requests, such as refills, questions or concerns I want to discuss. This makes it super easy. I simply print off a copy of the calendar appointment and give that to the nurse before meeting with the doctor. I also have a copy of it on my phone that I can also refer to.
As a result of doing this, an appointment that used to take 45 minutes, mostly driven by a nurse asking me questions, The nurse takes a couple of minutes to read them and ask any questions. She usually reads as she takes my blood pressure, so this easily shaves 5 to 10 minutes off my appointment time. She takes my printed notes, attaches it to her form and reviews it with the doctor. As the doctor examines me, we discuss my questions and concerns, since she already knows what they are, and before I am even done with my doctor, the nurse comes back with any needed prescriptions. As a result, my appointments are now about 30 minutes, instead of the initial 45 minutes.
Lesson
Look for opportunities to be more efficient with the routine or operational tasks, which allows you to focus on the most important items that need to be addressed. At the end of the day, it’s about being more productive and efficient with the time we have.
What I have learned as a cancer patient is that the cancer isn’t isolated to me. It has tentacles that reach out to my closest support team: my family. What happens to me impacts them. The decisions I make impact them. How I act impacts them. It truly is a team effort.
While I intuitively understood this, I didn’t understand the extent to which it was true. It wasn’t until my parents, who drove all the way from Mississauga to help my husband and I during my treatments, sprung into action. Even though they looked after the all things related to meals, laundry and acted as my chauffeur and support-person when my husband was working, my husband was still running ragged taking care of the dogs and kids so that I could have the space to rest after my chemo treatments.
Prior to starting my treatment, we put a plan in place to tell my children. I spoke to my daughter’s teacher in advance and she lent us a book. So, during spring break, we read them “Maman a le cancer” (Mom has cancer), a book specifically aimed at young children. Click here for a list of books explaining cancer to children. Our youngest understood that I was sick, but that was the extent of it. However, our eldest really took it in and started implementing some of the suggestions given in the book to help mommy and daddy. It focused on the team dynamic and she picked it up. She asked if I’d dye my hair pink before it fell out, which I did. Since she seemed to want to be a part of what I was going through I decided to leverage that.
Before shaving my hair off, I picked up some chemo caps. I bought a few extra for the kids: matching daytime and nighttime ones for my daughter and I, and a cute, versatile one for my son. They seemed to like wearing them on occasion, be it to go out or just to sleep. They came to play read or play cards with me in bed when I was too tired to play with them after school or camp. However, about half way through my treatment, something changed with our daughter.
Even though we explained to the children (aged 2.5 and 5.25 at the time of my diagnosis) that mommy was sick, we didn’t know how my diagnosis and treatment would impact them. And, it wasn’t until several months into treatment that we started seeing behavioural changes in our daughter. Over the summer, she was placed with 6 and 7 year olds in her swim camps since she was too strong a swimmer for the 4 and 5 year old activities. I also had an allergic reaction to the chemo drug I was switched to in the second half of treatment and I became very spent much more time in bed as a result of the severe side effects I had. These two things happened around the same time. I’m not sure if either of these were triggers, however she started asking questions about what she and the family would do when I died. She began having nightmares where she was being killed by insects. She sometimes cries and can’t explain why. And, last week, she asked me if she will get cancer because of I have it.
What horrible thoughts for a five year-old to be worrying about. She should care about what she will draw with her chalk on the sidewalk, who can pick up the most rings from the bottom of the pool and who will find who in hide-and-go-seek. She shouldn’t be worried about her or I dying! So I started digging around to see if we could provide her with better support as clearly, what we were doing wasn’t enough.
Luckily, there are has some fantastic resources at our disposal, and each have a different role to play in ensuring that myself, my family and any additional caretaker has access to support and resources. Here are the ones that I have found useful for my family and I:
Alberta Cancer Foundation‘s (ACF) mission is “To create more moments for Albertans facing cancer by inspiring our community to give to innovation in detection, treatment and care.” They provide patients with nurse navigators, which I have extensively used. They provide financial assistance. Let’s face it… having cancer isn’t cheap! My post-chemo injections were $1,700 per injection! Thankfully I have coverage. ACF also funds research and other cancer-related non-profit organizations in Alberta.
Wellspring is a Canadian-based non-profit organization that provides a multitude of different programs to those living with cancer. Their programs cover the gamut, from exercise, art, mindfulness, educational seminars, etc. We will be taking advantage of the “Adventures in Art” with the kids. All four of us will go to the sessions starting in October (September was already full!) and I know the kids will love making stamps, a treasure box and a holiday banner. They also have a great cancer resource library, with books for all types and stages of cancer, for adults and kids alike.
In Alberta, cancer patients have access to Psychosocial Oncology, a department within Alberta Health Services (AHS), which connects patients (and extends to their families) with psychologists, social workers and counsellors with the goal of helping us navigate the stresses caused by cancer, the treatment and recovery. Best of all, it is a free resource and is accessible via self-referral.
I’m also very thankful that my company has an Employee Assistance Program (EAP) as part of my benefits. With it, my dependants and I have access to custom, solution-focused. short-term support, advice and information relating to a specific issue. This is an employer-specific benefit and unfortunately isn’t available to everyone. Check with your employer to see if this is included in your benefits package.
Every cancer, every patient and every one of their situations is different. However, there are a number of resources available to cancer patients. If you aren’t sure what is out there, ask your medical team or reach out to your local cancer society. They can help guide you.
Blepharitis and dry eye syndrome from my treatments have been particularly bad the past few days and my doctor prescribed eye mask isn’t cutting it.
They sting so badly. I have two sets of prescription eye drops, one OTC drop and a prescription eye gel for night time. Add in the eye mask twice a day. My eyes have been like this for about 1.5 months and we keep trying different things.
Only 6 more chemo infusions to go, then maybe my eyes will start recuperating!
It’s a good news / bad news situation. Bad news is that my bloodwork wasn’t good (anemia, moderately high neutropenia, low platelets and signs of dehydration) mean that chemo is cancelled on Friday. I still get my immunotherapy (Herceptin) drip though.
The good news is that I didn’t actually realize I had chemo scheduled (confusion in my protocol since I’m on a drug rarely used for my stage of cancer but had to go on it because of an allergy to the previous “chemo cocktail”. With that, I can at least not feel like crap for my only long weekend I have not had chemo on. Every single long weekend since March I had chemo.
But, because my bloodwork was pretty bad, I’ll have to be extra careful around people and making sure my body temperature doesn’t drop over the course of the long weekend. Last week, my basal temperature was bordering hypothermia and if I drop back down to 35.3 or so, I need to go to ER.
Oh chemo, we continue on this love-hate relationship, but at least I’ll get to relax in Radium for a few days and hopefully feel better. I will still get my immunotherapy treatment (Herceptin).
This will treatment #3 of 17 total Herceptin treatments over a one year period (i.e. it’s every 3 weeks). It looks like my body has adapted to it and I am not exhibiting any of the allergic side effects I had my first two rounds. Yay! And, as of this treatment, my Herceptin drip is only 30 minutes. Today, finding a vein actually took longer than the time the drip will take. 🙄
The nice thing about Herceptin is that I’ll be able to return to work once I’m done my chemo, surgery and radiation even though I’ll still be on Herceptin. The side effects are minimal, thank goodness!