“Health literacy continues to be a very important part of recovery and a major reason why I became a UHN Patient Partner,” Jack Ireland writes in an essay to mark Health Literacy Month. (Photo: UHN)
Jack Ireland is involved in building health literacy as a UHN Patient Partner. In this essay, he shares what worked for him as he navigated his journey with stroke and cancer.
Health literacy has played a key role in my successful recovery.
I experienced a stroke in 2012, and learned a lot during that recovery time. When I received a cancer diagnosis three years later, I was able to transfer my stroke recovery learning to be an active partner in my care at Princess Margaret Cancer Centre.
Shortly after my cancer diagnosis, I had a biopsy, as well as a tracheostomy and feeding tube inserted. I attended a radiation therapy planning session to mould my therapy mask, plan my upcoming treatments and learn what to expect during and after treatment.
The information ‘dump’
My first thought when entering the hospital was that I felt like I was in a factory.
When I attended orientation, I was given a lot of information from caring providers, but it felt like I received an information “dump.”
My hair was standing on end. I was managing a feeding tube, getting used to a “trach” and experiencing some significant anxiety. I had so many questions: “Why is my body responding this way? Why am I not feeling ill during this journey?”
I felt as if my body and brain were detached and I was standing aside, observing the process. I was extremely tired and pain was coming and going in waves.
Luckily, my wife and son attended that first day, taking many notes for me and asked questions. Although I was given a lot of information, I was encouraged to ask questions and share thoughts and suggestions. I truly felt like a partner in my care.
Moving past the first visit as a team
After that first visit, we navigated together through the blood, dental, chemo, oncology, speech-language pathology and radiation nurse clinics. I started my radiation treatments.
We learned about the UHN Patient & Family Library, were given pamphlets and attended patient education classes to help manage my milestones as I progressed along the seven-week program.
Once out of treatments and during the 12-week waiting period to see the oncologist, I faced the challenge of navigating the feeding tube milieu. I didn’t know what I didn’t know, and it took a while to find out what information I was missing.
I met other patients who were going through treatment. A former patient explained that I was about to enter “middle earth,” and that the experience would forever change me.
During my experience in the “system,” I was met with kindness, empathy, compassion and soon determined that the Princess Margaret is anything but a factory.
Adjusting to my ‘new normal’
Recovery took much longer than I had anticipated or had the patience for. It helped to reflect on my stroke journey, as it reminded me that I would get stronger as I recovered from cancer treatments and adjust to my new normal.
I slowly rejoined the day-to-day fabric that we know is this life. A fellow patient shared that “cancer is a gift wrapped in barbed wire.” There is a profound peace having successfully navigated this journey.
Health literacy continues to be a very important part of recovery and a major reason why I became a UHN Patient Partner.
Jack Ireland’s guide to building your health literacy toolkit
Many people experience an “information dump” during their care, or don’t know what questions to ask. Use the tools that are available to you to navigate your “new normal.”
- Find patient education resources from reliable and credible sources. Learn to spot misinformation or disinformation online, especially on social media. The UHN Patient & Family Libraries can help patients, families and care providers locate safe sources of health information.
- If you can, bring a family member or friend with you to your appointments. They can take notes and offer support and clarity during overwhelming times.
- Use the myUHN Patient Portal and other self-management tools, especially during times when you are waiting for treatment or follow-up. If you feel comfortable doing so, share your information with your other care providers or care partners using proxy access.
- Seek peer support programs, both to receive support and information and also to offer it to new members. Socialization was incredibly important in my stroke recovery.
- If you’re able to, seek information and support beyond the hospital you’re receiving care at. There are community organizations and other hospitals that may have additional information or programs for you.
- Attend in-person or virtual classes and events, like program-specific workshops or public events, like the UHN Monthly Talks.