POGO

  • Staff List
  • Contact Us

Main menu

Skip to primary content
Skip to secondary content
  • About Us
    • Our Mission and Vision
    • Childhood Cancer Care Plan
    • POGO Land Acknowledgement
    • Diversity, Equity, Inclusion
    • Our Board
    • Our Partners
    • Our Donors
    • Privacy
    • Accessibility
    • Reports
    • Newsroom
    • Job Opportunities
    • Staff List
  • Programs & Support
    • Patient Care Programs
    • Financial Assistance
    • Survivor Care
    • Cancer Resources
    • Inspiring Stories
    • Clinical and Program Advisory Committees
  • Education
    • POGO Satellite Education Day
    • POGO Virtual Education
    • Indigenous Resource Guide
    • All Education Events & Conferences
  • Healthcare Practice
    • COVID-19 Updates
    • Pediatric Oncology Nursing
    • Clinical Practice Guidelines
    • POGO Satellite Manual
  • Research & Data
    • 2020 POGO Surveillance Report
    • POGO Research Unit
    • POGONIS – Childhood Cancer Database
    • Data Reports
    • Data Requests
  • Get Involved
    • Pajamas and Pancakes
    • Birthday Parties for POGO
    • Events
    • Volunteer
  • Ways to Give
    • Donate
    • Monthly Donations
    • Gifts of Stock and Securities
    • Become a Corporate Partner
    • Gifts in Honour/Memory
    • Legacy Gifts
    • Shop Online/Earn Cash Back

Blog

POGO > Blog > Survivor-to-Survivor Network
[sharethis]

Tag: Survivor-to-Survivor Network


The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor

Posted on August 10, 2022 by admin

Jessica Wright is a brain tumour survivor. In 2018, after an application process, she was selected as one of four Survivor to Survivor (S2S) Network Presenters. POGO’s S2S Network is a special series of interactive sessions where survivors present helpful information, lead discussions and share personal experiences about a variety of survivorship topics. During the course of their engagement, presenters build skills, a connection and a community with fellow survivors.


By Jessica Wright

By the time I was 10 years old, I was having lots of migraines and struggling at school.

My family brought me to the doctor several times, but I wasn’t diagnosed until my teacher—a childhood cancer survivor herself—convinced my parents to insist I get an MRI. I remember all of us were in shock when they told us I had a pilocytic astrocytoma tumour, which is essentially a slow growing brain tumour.

The tumour is smack in the middle of my brain so chemo would not have been effective, and surgery was not an option. I was treated with radiation for six weeks, but I still live with the tumour today; I liken it to a dead mouse behind a wall. I also live with several side effects. I struggle with balance; I move a bit slower than the average person and my strength is very poor. I have a strong sensitivity to smells and I still suffer from migraines. I am also blind in one eye. None of these things are significantly noticeable so I blend in with the rest of the world and look like a healthy person. That’s the thing with childhood cancer survivors; many of us live with disabilities long after we survived our illness. For some people, like me, these disabilities are invisible so we can be perceived as lazy, especially in a school or work environment.

Sign up for the The POGO School and Work Transitions Program newsletter

That is why I am so grateful to POGO for creating a program where survivors can learn from each other about how to deal with things like employment, school, advocacy and disclosure. I need special accommodations to compensate for my disabilities and I have learned firsthand that how and when you choose to disclose these things can contribute to your success at work.

There was the time I was hired to work at a store, and I chose not to disclose my disability. My job was to stock the shelves and set up for the store’s grand opening, after which, perhaps, I would be hired permanently once the store opened. It went well for the first couple of days until I got stuck in the aisle with cleaning products. I tried to tough it out, but I got light-headed and felt faint. I asked my supervisor if I could be moved to another area of the store and she was accommodating, but my co-workers didn’t know why; they just felt I was getting special treatment. I think if I had said something at the beginning, I would never have been put in that aisle to begin with and maybe things would have turned out differently.

I have another story where I disclosed my disabilities during the hiring process because part of my job was going to be accepting deliveries. I let them know that I cannot manage with very heavy lifting and about some of my other challenges because of my brain tumour. My supervisor was very understanding and even supportive. After a few weeks, when she saw me struggling at the end of a long day, she asked if I wanted to work shorter shifts. She tried to work around my limitations as best she could.

Being a POGO S2S facilitator has enabled me to share my experiences with other survivors and hopefully help them cope with their own struggles. It has also been very uplifting and empowering for me. Everyone understands what I am going through. No matter what I say or what I do, they don’t judge me, and they don’t complain. I have never been anywhere where I felt so accepted. It has truly been the best experience of my life.

This story was featured in POGO’s 2019 Community Impact Report.

Posted in In the News | Tagged childhood cancer survivors, CIR, Community Impact Report, POGO S2S Network, S2S, Survivor-to-Survivor Network, survivorship

Presentations Help Survivors Build Skills

Posted on February 17, 2022 by Kirsten Efremov

The 2022 Survivor to Survivor (S2S) Network presenters have been chosen! The four presenters are ready to work with topic experts to create presentations on subjects that matter to the childhood cancer and brain tumour survivor community.

Payton’s topic is how volunteering and networking can help survivors find jobs. She says, “I am so passionate about this topic because I have been fortunate enough to benefit from the services of many volunteer-based organizations. I have seen what a difference volunteers can make and just how integral they are to these organizations. I am looking forward to sharing this passion with the S2S Network!”

Dirk, who’ll be presenting on how to speak up and advocate for yourself, believes that S2S sessions can help childhood cancer survivors, especially when they’re transitioning from treatment to the “real-world.” He says what’s so important is that survivors not only learn from the content of S2S sessions, but they also get to connect with other survivors and feel that they’re not alone.

Olivia will be presenting on how each childhood cancer or brain tumour survivor’s journey is different and shouldn’t be compared to anyone else’s. She knows that after treatment, survivors often need to learn how to regain confidence in their ability to grow and learn, and she wants them to know that there is no deadline to be successful.

Faiza’s session will be about how to deal with difficult conversations that can come up about cancer and survivorship, and things survivors can do to support their wellbeing. She says, “I never felt such a deep connection with others in terms of cancer until I joined last year’s S2S session. If you struggle with any late effects of cancer, I’m sure the workshops will be a great source of inspiration for you, as much as they were for me. I can’t wait to see you there!”

Watch your email and follow us on Facebook and Instagram for the dates of each S2S session!

Sign up for POGO Transitions eNews Newsletter and get S2S Workshop updates.

Learn more about POGO’s Survivor to Survivor (S2S) Network.

Learn more about the POGO School and Work Transitions Program.

Posted in Transitions | Tagged childhood cancer survivors, S2S, Survivor-to-Survivor Network, survivorship

The 2021 Survivor to Survivor Network Workshop Series is Coming Soon!

Posted on February 26, 2021 by Kirsten Efremov

The S2S facilitators are being matched with topic experts from the community and are starting to build their workshops.  Here’s what you have to look forward to.

Anuraj’s workshop will be about coping with cognitive effects of childhood cancer treatment. He’ll talk about day-to-day challenges; school, work, and life impacts, strategies to manage cognitive impacts, and how to find support if you need it.

Harman is going to teach other survivors about how meditation and mindfulness can be used to influence behaviour. Some of his topics will be: the mind/body connection, being mindful of how we talk to ourselves, how to start meditating and cognitive behavioural therapy.

Sara’s workshop is called, “Will They Understand? The Personal Disclosure Dilemma at School and Work.” She’ll discuss when, how much and what personal health information to disclose; why it’s important; the pros and cons of disclosure; who to talk to for support and information; and your legal rights.

If you’re considering college as your academic path, Emelia will teach you how to get on it and what to expect, including: classroom accommodations/accessibility services, programs for people with disabilities or high school certificates, ways to pay for college, different pathways to college, and living at home or in residence.

All workshops will be hosted virtually.  Information about the workshop dates and how to register will be coming soon.

Posted in Transitions | Tagged childhood cancer survivors, Survivor-to-Survivor Network, The POGO School and Work Transitions Program

Sam’s Story: Focusing on Ability, Not Impairment

Posted on June 7, 2019 by admin

Sam Baik

I was seven years old, living in South Korea, when I was diagnosed with a brain tumour and treated with a 12-hour surgery at Seoul National University Hospital. I can still remember the atmosphere in the operating room—it was cold and not a friendly setting for kids. As a young boy in an adult hospital it was very scary, but my dad was with me and comforted me until I fell asleep. The surgeon was not able to remove the entire tumour because it was pressing against my optic nerve, so I have been left with low vision and weakness on the left side of my body.

My family moved to Canada when I was 10 years old because my parents wanted better opportunities and better medical care for me. Shortly after we arrived, I developed severe headaches and was hospitalized at McMaster Children’s Hospital in Hamilton. I was diagnosed with hydrocephalus, an accumulation of cerebrospinal fluid within my brain, likely related to my tumour. This typically causes increased pressure inside the skull. The setting of this hospital was very different from the one I was treated at in South Korea. The staff at McMaster are used to children and made me feel very comfortable about my treatment and medical procedures. I received a shunt implant that will remain in me for the rest of my life. A shunt is a tube that is inserted to divert the fluid away from my brain and, luckily, I have lived headache-free since then.

As part of my follow-up care, I receive MRIs every six months at a POGO AfterCare Clinic. In 2010, the test showed my tumour had grown. I received 70 cycles of chemo over an 18-month period. It shrunk the tumour a bit and it has remained stable ever since. I guess because of all my experiences in childhood, I always knew I wanted to work with children when I grew up. When I was ready to apply to post-secondary, I started to work with a POGO academic and vocational counsellor who helped me with the transition from high school to college. She helped me with things like adapting to new academic pressures and getting special accommodations because of my vision and mobility impairments.

I am proud to say I have graduated from Mohawk College with a degree in Child and Youth Care and I got a job at the YMCA afterschool program. I facilitate activities for kids in Grades 3 and 4. I love it because the kids are honest and energetic. I recently applied for and was offered the position of workshop facilitator for POGO’s Survivor-to-Survivor Network where I will use my personal experience to lead discussions on topics that are relevant to other childhood cancer survivors. Topics include employment, education, advocacy and self-disclosure. Self-disclosure can be a tough topic to tackle. The workshop revolves around how childhood cancer survivors disclose information about their disease, its treatment and resulting health complications to future employers and other people they are close to. It focuses on changing the language around any impairments they have, to describing what they CAN do. As survivors, we have overcome many difficult situations in life and we are stronger for it, more resilient. We have a lot to offer employers who are willing to see past our disabilities. I am excited for this opportunity to be a POGO workshop facilitator because I want to empower survivors to overcome the barriers that have resulted from their cancer and not let these challenges hinder what they can achieve in life. Because of the support I received from POGO academic and vocational counsellors, I was accepted to college, I have a diploma and I was able to gain relevant work experience. I just want the same for other survivors.

By Sam Baik

Sam’s story first appeared in the  2018 Community Impact Report, page 14.  Sam has since completed a successful term as a Survivor-to-Survivor Network facilitator.

Posted in Misc | Tagged academic and vocational counsellor, brain tumour, McMaster Children’s Hospital, POGO, Survivor-to-Survivor Network

Donate

Blog

Education Portal
Survivor Conference
All Categories

Categories

Newsletter Sign-Up

Please leave this field empty

@POGO4Kids

March 27, 2023

Our trauma-informed care webinar series starts tomorrow! Register for free and join us for a session about shifting the conversation from “what’s wrong with you?” to “what happened to you?” https://www.pogo.ca/education/virtual-education/

Reply on Twitter 1640419119999623170 Retweet on Twitter 1640419119999623170 1 Like on Twitter 1640419119999623170 2 Twitter 1640419119999623170

Follow @POGO4Kids

Quick Links

  • For Professionals
    • Read Cancer Care Plan
    • Review our Guidelines
    • Request Research Data
  • Families & Kids
    • Get POGO AfterCare
    • Meet with a POGO Nurse
    • Get Care Closer to Home
  • For Survivors
    • Find Local Resources
    • Set Goals for your Future
    • Educate Yourself
  • Get Involved
    • Host an Event for POGO
    • Volunteer with POGO
    • Partner with POGO
  • About Us
    • Our Mission and Vision
    • Childhood Cancer Care Plan
    • POGO Land Acknowledgement
    • Diversity, Equity, Inclusion
    • Our Board
    • Our Partners
    • Our Donors
    • Privacy
    • Accessibility
    • Reports
    • Newsroom
    • Job Opportunities
    • Staff List
  • Programs & Support
    • Patient Care Programs
    • Financial Assistance
    • Survivor Care
    • Cancer Resources
    • Inspiring Stories
    • Clinical and Program Advisory Committees
  • Education
    • POGO Satellite Education Day
    • POGO Virtual Education
    • Indigenous Resource Guide
    • All Education Events & Conferences
  • Healthcare Practice
    • COVID-19 Updates
    • Pediatric Oncology Nursing
    • Clinical Practice Guidelines
    • POGO Satellite Manual
  • Research & Data
    • 2020 POGO Surveillance Report
    • POGO Research Unit
    • POGONIS – Childhood Cancer Database
    • Data Reports
    • Data Requests
  • Get Involved
    • Pajamas and Pancakes
    • Birthday Parties for POGO
    • Events
    • Volunteer
  • Ways to Give
    • Donate
    • Monthly Donations
    • Gifts of Stock and Securities
    • Become a Corporate Partner
    • Gifts in Honour/Memory
    • Legacy Gifts
    • Shop Online/Earn Cash Back

©2022 Pediatric Oncology Group of Ontario

480 University Avenue, Suite 1014 | Toronto, Ontario, M5G 1V2, Canada | Charitable Registration Number: 871067245RR0001 |
1-855-FOR POGO (367-7646) | Contact Us | Website Privacy Policy | Website Disclaimer | Satellite Manual Disclaimer |