Conversations With My Mom: A Childhood Cancer Survivor’s Guide to Awkward Health Talks
“Mom, why doesn’t that man have any hair?”
“Can I have a chair with wheel like that lady?”
Ah…the unfiltered curiosity of children. My twin brother and I were masters of asking deeply personal, highly inappropriate questions at the absolute worst times. Our poor mother was (and still is) my go-to person for pretty much everything. Like many parents, I am sure she sometimes dreaded fielding our loud and awkward inquiries in public places, but she always handled it with patience (and the occasional deep sigh).
Fast forward to our teenage years, my mother probably braced herself for awkward questions about puberty, sex or some horrifying combination of the two. But life threw a different kind of curveball: at age 11, I was diagnosed with acute myeloid leukemia (AML). Suddenly, my questions weren’t just embarrassing—they were existential.
“Why is this happening to me?”
“Am I going to die?”
While she did not always have a definitive answer, she answered truthfully and the best she could. And now, more than 20 years post-treatment, I still go to her first when I have a health question.
Which led to the semen sample incident.
One particularly awkward situation came about after my oncologist suggested a fertility test to check if my cancer treatment had affected my ability to have children. Simple enough, right? So, I went to a lab and inquired about giving a semen sample. What follows is the conversation I had on the phone with my mother while walking home (yes, on a busy public street).
Me: Hey, so I went to the lab today about that fertility test. The lady was very clear that I could not provide the sample there.
Mom: (sighs) Jamie, I really don’t need to hear this. (pause) Wait, so they don’t even give you a private room?
Me: Apparently not! Also, I have to abstain for a few days beforehand, and the sample has to be delivered within a specific time frame.
Mom: But you don’t have a car and you won’t make it on time by bus! Oh no. (pause) Can’t they just do it another way? Like, stick a big needle in there?
Me: I really hope not.
Mom: I really don’t need to hear about this… (pause) Anyway, have I told you about my mammograms?
Me: Yes. Repeatedly.
Fertility: The Question No One Wants to Ask
One of the hardest parts of surviving childhood cancer is dealing with the long-term effects—many of which don’t show up until years later. Fertility is a big one. It wasn’t on my 11-year-old mind, but fast forward a couple of decades, and suddenly, it’s a very real concern.
For some childhood cancer survivors, fertility can feel like an unanswered question lurking in the background. The only way to find out is through awkward, slightly mortifying medical tests. It’s not always an easy subject to talk about, but it’s important. Whether you’re considering having kids, exploring options like sperm or egg freezing, or just trying to understand how treatment may have affected you, asking the question is the first step. And if those conversations feel too awkward to have with a doctor, well—there’s always your mom.
Jamie is a childhood cancer survivor who takes pride in his role as Communications Assistant at POGO. His creativity and self-described “weirdness” is reflected in his writing and his presentations at POGO staff meetings. Reading and playing video games would be his well-developed hobbies if only his beloved cat, Lupin, would just give him some alone time.
A Search for Health Care beyond Survival: Rabi’s Story
My name is Rabi Qureshi. I am 33 years old and I am a three-time cancer survivor who feels as though I’ve fallen through the cracks.
I was 15 when I was diagnosed and treated for thyroid cancer. By all accounts, my life should have returned to normal. Instead, I gained 40 pounds in just two months, developed cystic acne and my grades plummeted.
At 21, I finally lost the weight but was still struggling with depression when the thyroid cancer came back. It had spread to my lymph nodes. The surgeries that followed left me with chronic pain in my head and neck that had me stuck in bed for the better part of three years, contemplating suicide daily. I promise that is not an exaggeration.
Rewiring my Brain Came Years after Treatment
By 2012, at 24 years old, I was feeling better. Nearly all the weight was gone. I had found a new passion and returned to college to pursue my dream of becoming an events specialist. And though everything seemed to take triple the effort or more than it used to, life seemed livable again. So I ignored the small bump under my skin that was slowly getting harder and bigger, and delayed the biopsy until the summer of 2013. What caught me off guard was that this time it was breast cancer. After five surgeries and some aggressive chemotherapy, I felt like a fraction of the person I once was. Mostly, I was living in a haze of foggy thoughts and fractured logic. It took several years out of treatment for me to rewire my brain so that I could articulate my thoughts and speak my mind confidently.
I can’t summarize all that cancer took from me, but I can tell you peace of mind was definitely among the body count. Turns out PTSD among cancer survivors is a more common issue than it is common knowledge.
It’s 2021 and I have a very limited number of functional hours in the week. I am still struggling to take care of my body and brain. I have been ping-ponged from one doctor to another who seem not to know what programs, resources and next steps are available. I work hard every day to teach myself ways of healing on my own but I can’t help but feel that the system is fractured and I am the collateral damage; I don’t believe I should have had to face this alone.
Up to this point, I experienced a severe disconnect between programs and services and my healthcare specialists. I believe the result is an unassembled Mr. Potato Head model and that interdisciplinary coordination and cooperation among fields of medicine should be at the centre of a more efficient patient care model.
Discovering POGO AfterCare
I recently spoke about my health struggles and lack of support from the healthcare system at the 2021 POGO AfterCare Education Day. I was encouraged by how receptive the doctors, nurses and psychologists were to what I had to say and how supportive everyone was. A friend of mine, another survivor who also spoke at the POGO event, convinced me to make an appointment at the POGO AfterCare Clinic in Toronto, something I had only recently become aware of and had yet to explore. It has only been a couple of weeks since that first intake call, but already there seems to be a plan in place for an integrated approach to treating the variety of issues that my cancers have left me with; I will have to keep you posted. I am cautiously optimistic, in spite of myself.
Modern Health Care Should Aim for Quality of Life
Class, ability, gender, a safe home, pre-existing conditions and race/culture can all contribute to unique challenges in survivorship. My story, only one of many, is evidence that it is more important than ever to create holistic systems designed with compassion at their roots, as a complete and comprehensive patient care model, systems that take the whole person into account—mind, body and circumstance. Modern health care, after all, shouldn't stop at quantity of life; it's well past time to prioritize quality of life.
Access to primary care in a shared-care model with AfterCare is critical for survivors
Rabi Qureshi is an author, advocate and three-time cancer survivor. She is also a special events manager and an artist who is outspoken in matters of mental health care and holistic and preventative medicine.
POGO AfterCare Clinics promote health and health education, and monitor survivors regularly for late effects of cancer treatment, identifying these effects as early as possible. Ultimately, POGO AfterCare Clinics contribute to advances in cancer care; if a particular form of treatment is found to cause a certain long-term effect in cancer survivors, current treatment practices can be modified, ultimately improving outcomes of future survivors.
POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care
Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.
The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge.
“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”
POGO AfterCare Aims for Shared-care Partnership with Primary Care
Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.
“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I'm receiving optimal care.”
UPDATE: Dedicated staff across the POGO AfterCare Clinics have completed discussions with 131 primary care practices about accepting a survivor. Many of the participating primary care practices serve northern, rural and remote communities.
Caring for Survivors Increasingly Important as Population of Survivors Grows
Researchers tell us that up to 80%1 of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.
With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2017, nearly 20,0002 children and youth in Ontario are survivors of childhood cancer. And right now, about 1 in 460 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.
The History of POGO AfterCare
In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.
1Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016
2Alive at least five years, or close to 5 years, after diagnosis.