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.
Virtual Learning When You Have ADHD
From the Perspective of a Childhood Cancer Survivor - Leigha Bartholomew
Being a childhood cancer survivor, I know what it is like to fall behind in school. Months of my schooling were spent in a hospital and attending weekly medical appointments. I began to feel overwhelmed thinking I’d never be able to catch up or that I wasn’t doing as well as my peers. It was never expected that I would be at the same level as everyone else while I was going through treatment, at the time I believed I just wasn’t good enough. I’m sure a lot of cancer survivors have felt the same way at one point or another.
I had a similar feeling when post-secondary schools introduced a virtual learning environment in the midst of the pandemic. I started noticing a shift in my capabilities. A new learning atmosphere meant new challenges that I couldn’t adapt to as quickly as I had in the past. Attending classes became more difficult, focusing on work and remembering to finish assignments on time developed into more of an issue than it had been just a few months before, and my motivation to be involved in class discussions decreased. On top of that, I couldn’t bring myself to speak with my professors over Zoom about the challenges that I was facing. It seemed like I was in a rut and I didn’t know how to pull myself out.
My ADHD diagnosis came just a few months after we started learning virtually. While I was familiar with ADHD, I was surprised to learn that I had the disorder myself. Adding this on top of the other issues I had with mental health (I was diagnosed with Generalized Anxiety Disorder in high school) was not something I had even considered, especially so far into my education. If someone were to look at my grades, I bet they wouldn’t have considered it either. Luckily, I didn’t have to go through these challenges all on my own.
Because mental health and learning disabilities pose a challenge for a number of young people, there are resources that have been put into place by schools to help students get through their education. In post-secondary school, there are learning strategists or assistive/adaptive technologists for students seeking academic support. Your academic advisor is also available to help you find programs or services tailored for your specific challenges.
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Being a childhood cancer survivor can further complicate things. While some survivors may already be predisposed to having mental health and learning challenges, others can develop them due to the treatments they received or other related factors and experiences. These issues can also continue into adolescence and adulthood. Since most people working in pediatric oncology are aware of these challenges, there are specific resources available to survivors and their families. POGO AfterCare Clinic professionals, such as counsellors, art therapists, clinical psychologists and social workers are some of the resources available to help cancer survivors develop strategies related to the difficulties they might be facing with school or everyday life, and POGO School and Work Transitions Counsellors can help you to access these various resources!
My advice to fellow survivors would be to understand that you are not alone if you find yourself struggling. I am sure a lot of people can relate to me when I say that I prefer in-person schooling over the virtual classroom, but that doesn’t mean it’s any less scary having to make the transition. If my own experiences have taught me anything, it’s that everyone has a different style of learning. If you need help, reach out. No matter how difficult things might seem, there are always people and programs available to students and survivors if they need help.
Life After Childhood Cancer – A Conference for Survivors
From setting life goals and dealing with the long-term health effects of treatment, to telling a new love interest about their experience with cancer, survivors of childhood cancer may struggle with many issues.
From October 16 – 18, 2015, POGO and Camp Oochigeas will present Life After Childhood Cancer, the third POGO survivor conference to address key issues survivors themselves have identified as being important to their health and well-being.
Matthew is a proud high school graduate, a college grad and a survivor. He has ongoing physical and cognitive challenges brought on by his disease and its treatment. He has difficulty with fine motor coordination, and a hard time listening and translating that information on paper. But he is driven to succeed and perseveres. Instead of taking notes by hand, he uses a laptop. If he doesn’t understand something, Matthew has no problem asking for help or researching until he figures it out. Matthew will attend the survivor conference for the first time this year.
“I’m looking forward to the survivor conference,” says Matthew. “I'm curious to hear from other survivors about their experiences and to share mine.”
In past years survivors of all ages have attended the conference and say it has helped them to better answer questions from others who have not experienced cancer.
“The conference aims to address educational and information needs in the context of social and recreational interaction – a combination we have found addresses survivors’ needs in a unique fashion, directly applicable to their daily life,” says Dr. Mark Greenberg, Senior Adviser, Policy & Clinical Affairs at POGO.
Practical approaches to their issues, like fertility and the disease’s impact on their families, are presented by leading experts, and also by other survivors. Survivors leave the conference knowing what questions to ask of their family doctor, who may never see another survivor in their practice.
“I’m happy that some sessions are run by other cancer survivors because it’s good to know I’m not the only one going through this,” says a past conference participant.
As for Matthew, his list of questions is building.
“I'm very interested to see what I can learn that will help me in the future,” he says.
While no one wants to think about cancer after they have beaten it, the thought of attending Life After Childhood Cancer would be one that is not wasted.
Get details about the 2015 Ooch/POGO Survivor Conference.
Screening and Prevention – Empowering through Education
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Presentation Description:
Do you show up at your screening appointments wondering why you’re even there? Or maybe you haven’t gone at all and are worried you missed the memo? Screening and prevention can be a tricky subject because there isn’t a ‘one size fits all’ standard. This presentation provides an overview of exactly what screening is, why it’s important, who is at risk for what, and what you need to know to responsibly manage your health for years to come.
Speaker:
Paul Nathan, MD, MSc, FRCPC
Director, AfterCare Program
Hospital for Sick Children
Workshop A - Female Fertility: Your Questions Answered
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Presentation Description:
Fertility concerns are not unique to cancer survivors, but survivors often have exceptional circumstances that can affect fertility options. This workshop will answer your burning questions about female fertility, including options and next steps if you’re thinking of starting a family.
Speaker:
Ellen Greenblatt, MD, FRCSC
Medical Director, Centre for Fertility and Reproductive Health
Mount Sinai Hospital, Toronto
Workshop B - Male Fertility: Your Questions Answered
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Presentation Description:
Fertility concerns are not unique to cancer survivors, but survivors often have exceptional circumstances that can affect fertility options. This workshop will answer your burning questions about male fertility, including options and next steps if you’re thinking of starting a family.
Speaker:
Michael Neal, BSc. (Hons), MSc
Scientific Director
ONE Fertility, Burlington
Workshop E - A Leg Up: Assistive Technology for Individuals with Cognitive Challenges
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Presentation Description:
Many childhood cancer survivors struggle with cognitive challenges as a result of their diagnosis and/or treatment and assistive technologies may be able to help. This workshop provided an overview of new assistive devices/technologies available to cancer survivors that can aid and improve cognition; features to look for and how to get your hands on this technology; and complimentary learning strategies to help you reach your academic and career goals.
Speaker:
Todd Cunningham, PhD, C. Psych (Supervised Practice)
Psychologist
Ontario Institute for Studies in Education (OISE)
Workshop F - Managing Your Health After Cancer
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Presentation Description:
Managing your health after cancer can be overwhelming, but empowerment is the key. That’s why POGO created the Passport to Health and Survivor Care Plan Package, a tool that is specially customized to each survivor to help them learn about late effects they may be at risk for and keep track of treatment information. This workshop provided an overview of this innovative tool, how to get it and what you need to do to successfully manage your health for years to come.
Speaker:
Carla Bennett, RN, BN
Coordinator of Clinical Programs
Pediatric Oncology Group of Ontario (POGO)