The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor
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.
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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.
Presentations Help Survivors Build Skills
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!”
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Learn more about POGO's Survivor to Survivor (S2S) Network.
Learn more about the POGO School and Work Transitions Program.
Dr. Ewurabena Simpson Discusses Culturally Respectful Health Care
A conversation with POGO Transitions Counsellor Sarah Brandon and her respected colleague Dr. Ewurabena Simpson.
Sarah: We know that representation matters. Can you describe what that means for Black patients and their families?
Dr. Simpson: Speaking from my own experience as a patient, having a pediatrician who was also from the Black community had an important impact on the therapeutic relationship that my pediatrician had with me and with my family. Seeing someone from a similar cultural background meant that our pediatrician understood how our skin tone may have changed the way that certain conditions manifested on my complexion and how our cultural background influenced my family’s views on health and learning. It also meant that our family felt safe discussing specific challenges and experiences of subtle or overt racism as we settled into our life in Canada. One of the most lasting impacts that having a Black pediatrician had for me was that it helped me to see myself as a future physician, that I also belonged and that I could make a difference in the lives of all children regardless of their backgrounds.
Sarah: What does culturally respectful health care mean to you and what are 3 goals to strive for?
Dr. Simpson: I don’t think that there is a right answer to this question but in my mind, a commitment to culturally respectful health care would imply that we as healthcare providers will maintain an awareness and openness to others regardless of whether they are similar to or different from ourselves.
Dr. Simpson’s Three Goals for Culturally Respectful Health Care
- It is important to acknowledge that we all come from different life experiences and cultural backgrounds that will influence the way that we experience health and access health care.
- As healthcare providers, we should be aware that we cannot know everything about another person’s experience.
- We should remain humble and open to learning about our patients’ cultural backgrounds and experiences so that we can respond to and support their health needs in a way that is sensitive to and respectful of their culture.
Sarah: What can healthcare providers do in their practice to ensure Black patients feel safe and heard in our care?
Dr. Simpson: With each and every patient, it is important for us to check our personal biases and to be aware of how they may unconsciously influence our daily interactions and our approaches to patient care. When caring for Black patients, it is important to recognize that being Black does not represent a specific belief system, group of behaviours or any cluster of health attributes. Each patient is an individual and every family is a unique unit. As a healthcare provider, you should treat every patient encounter with an open mind and avoid making generalizations or assumptions that are based on a patient’s racial or cultural background. While being of African or Caribbean descent may be associated with race-based disparities in health, we should always remember that a patient’s health and experiences are shaped by much more than their physical attributes.
Sarah: What is the importance of honouring Black History Month in hematology and oncology as part of the continued fight against racism?
Dr. Simpson: Black History Month is our opportunity to celebrate the ongoing contributions of African, Caribbean and Black communities in Canada. By acknowledging these contributions and these communities in medicine and in hematology/oncology, this inclusion reinforces the fact that we all belong in this community, that we all have a role and that we all have a voice.
Sarah: Do you have a message for our Black childhood cancer survivors this Black History Month?
Dr. Simpson: You have gone through a long and difficult journey to overcome your illness and to get to a place of better health. You are among our champions for childhood cancer and for Black history. You inspire all of us and we hope that you feel cared for and safe in your medical care and in your day-to-day lives. If there are ways that we, as your healthcare providers, can be more supportive and sensitive in your care, we are open to doing better.
While this article was written in recognition of February being Black History Month, POGO recognizes that continually providing culturally respectful health care contributes to our vision of an excellent childhood cancer system. Read POGO's Diversity, Equity and Inclusion statement.
Sarah Brandon is a POGO Transitions Counsellor working at CHEO and Kingston General Hospital to empower youth and young adult survivors of childhood cancer and brain tumours in their transition from high school to post-secondary education or work.
Music heals and can change your life
Ten years ago, I was diagnosed with a papillary brain tumour of the pineal region. I went through three surgeries, a lumbar puncture and thirty treatments of radiation at CHEO and SickKids. I am 21 now.
Since I was young, music has been important in my life. When I was in the hospital for cancer treatment, I would associate different doctors, nurses and family members with songs. I also sang to help me through tough times. In fact, when I woke from the third surgery, my family and doctors were surprised to find me singing!
And it’s not just me. Neurological researchers have found that music reduces the stress hormone cortisol. It releases dopamine and serotonin into the brain, helping you relax and stay focused. And it stimulates oxytocin—a hormone related to positive, happy feelings. Studies have also shown that music can help people process their feelings and change their mood completely.
Try it yourself! When someone you know is in a bad mood, try playing one of their favourite songs to see how they react. It might seem like a small thing, but as mentioned above, music can improve your mood and your whole outlook.
Written by Ariane Delorme
Mon nom c’est Ariane Delorme et dix ans passés, j’ai été diagnostiqué avec une tumeur cérébrale papillaire de la région pinéale. J’ai dû subir trois chirurgies majeures, une ponction lombaire, et trente traitements de radiations à CHEO et à Sick Kids. J’ai vingt et un maintenant.
Depuis un jeune âge, la musique est devenu très importante pour ma vie. Lorsque je me retrouvais à l’hôpital pour mes traitements, j’associais des chansons aux docteurs, infirmières et membres de ma famille. Je chantais aussi pour m’aider à passer au travers des temps difficiles. Je me suis même réveillé de la troisième chirurgie en chantant! Ceci a laissé mes docteurs ainsi que ma famille surpris.
Ce n’est pas seulement moi. Les recherches en neurologie ont découvert que la musique réduit le cortisol, qui est un hormone de stress. Ça relâche la dopamine et la sérotonine dans le cerveau, qui aident à se détendre et rester concentrer. Ça stimule aussi l'ocytocine. Une hormone reliée aux pensées et sentiments positifs. Les études ont aussi montré que la musique peut changer l'humeur complètement des gens.
Essaie toi-même! Lorsque quelqu’un vous connaissez est pas dans la meilleure humeur, essais de jouer l’une de leurs chansons préféré pour voir comment ils réagissent. Ça semble peut-être comme rien, mais comme mentionné ci-dessus, la musique peut améliorer votre humeur et votre perspective.
Écrit par Ariane Delorme
Returning to School after a Cancer Diagnosis? Ask for Help!
Written by: Tulsi Kapadia
The transition to return to school can be exceptionally difficult after a long period of cancer treatment. I experienced this firsthand. I was diagnosed with cancer early in Grade 7, which caused me to miss eight of the ten months in that school year and much of the next because I was still on active treatment. It was challenging to manage my health and academics simultaneously, but I found that there were a few things that made school a bit easier.
If you’re anything like me, you don’t like to get “special treatment.” However, it is warranted sometimes and I recommend you try doing everything you can to make your school life less difficult. Here are some of my tips to make the transition easier, especially if you’re in middle school or high school.
Count on your friends
One thing I found very challenging after my return to school was my social life. Before diagnosis, my main way of socializing was with friends at school. But when I returned to the classroom the following year, I hardly knew anyone. I requested the school transfer one of my close friends into my class which made the school year significantly more manageable for me. I had someone I could talk with; he introduced me to other people which helped me build my social skills. Also, if I ever fell behind on schoolwork, I could rely on my friend to catch me up with anything I missed. Having that one friend can be a huge help socially and academically, both of which I really appreciated back then.
Get support from your teachers
Another incredibly useful support is to have understanding teachers who are willing to accommodate you regarding tests and assignments. This means taking the time to explain your diagnosis and any related issues you may still be experiencing. When your teachers are informed and willing to support you, this allows you to focus on your health if there are times when you don’t feel too great. The biggest thing about support from teachers is not to be afraid of asking for extensions when you need the extra time. If you come across a teacher who does not understand your situation, it would be best to speak with a guidance counsellor or the principal to see if they can help you get the accommodations you need.
Build strength by asking for help
The bottom line is that it’s okay to ask for help or speak up if you have an idea for a way to make your transition back to school easier. It’s an exciting and challenging time and some people will understand that and support you. Remember, asking for help is a strength, not a weakness!
Creative Corner with Josh - eNews
Josh is an incredibly talented guitar player, who also happens to be a survivor. Check out his video!
(If you are using Internet Explorer, video may not load as intended).
If you have an interest in learning how to play guitar (or just want to hear great music), he is your man! To see and hear more of Josh:
YouTube: @Josh Taylor–Brown
Facebook: @Josh Taylor-Brown Music
Instagram: @J.tbrown
If you’re interested in taking guitar lessons, Josh would love to hear from you at jtaylorbrownz28@gmail.com
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.
We Are All Storytellers: Discovering the Power of Knowing and Sharing Your Story
Presentation Description:
"Facts lead to knowledge, but stories lead to wisdom." - Dr. Rachel Remen
Many childhood cancer survivors may not realize that they are living an amazing story or know how to begin telling it. This fun and interactive session drew on Mike Lang's and Raymund Ong's own personal experiences, as well as short digital stories and murals created by other cancer survivors, to explore the idea of storytelling as it relates to cancer and our lives in general. The goal of the session was to empower and inspire survivors to tell their stories so that the wisdom they have gained from their painful (and incredible) life journey can be shared with others who need it.
Telling Their Story: Video from the 2015 Survivor Conference
Five attendees of the 2015 Ooch/POGO Survivor Conference shared their perspectives on survivorship; the challenges and obstacles they faced, the effect their diagnoses had on their lives and how they've found hope, inspiration and fulfilment. These individuals shared their stories in the hopes that they will resonate with other childhood cancer survivors, who in turn may choose to tell their own.
Video Credit: Michael Lang, Survive & Thrive Expeditions Ltd.
Speakers:
Michael Lang, MSc
Executive Director, Survive & Thrive Cancer Programs
Specialist, Person Centred Care Integration, AHS CancerControl
Research Assistant, University of Calgary
Raymund Ong
Founder, C4 Murals
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.
Workshop C - 'How did you get that scar?'... and other Socially Uncomfortable Moments of Being a Cancer Survivor
VIEW THE PRESENTATION
Presentation Description:
So you’ve survived childhood cancer and you have some of the cold hard facts from doctors about what may be next for your health. But what about those socially awkward conversations and situations you may encounter as a survivor that aren’t in the medical books? Lead by two childhood cancer survivors, this workshop explored those socially awkward, embarrassing, difficult and sometimes funny questions and conversations, from responding to “How’d you get that scar?” to telling a new dating partner about your unknown fertility status.
Speakers:
Vanessa Pastoric, BHSc, CCLS
Certified Child Life Specialist
Grand River Hospital, Kitchener
Natalie Wilson, MA, CCLS Coordinator and Facilitator
Young Carers Program of Hospice Toronto