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.
Mental Health Support for Childhood Cancer Survivors
$1M Donation to Help POGO Transitions Program Expand Services
POGO is a proud recipient of a $1M donation from the Slaight Family Foundation as part of their $30M Mental Health Initiative supporting 19 Canadian organizations.
The funding, divided equally over four years, enables expansion of the POGO School and Work Transitions Program. This program supports childhood cancer survivors facing significant learning challenges—resulting from their cancer and/or treatment—which can interfere with their ability to achieve their educational and career goals. Furthermore, the impact of COVID-19 on the mental and emotional well-being of childhood cancer survivors has been substantial. Many are experiencing heightened anxiety regarding school or job security. Due to underlying conditions they may have as a result of their disease or its treatment, they fear they are at higher risk for developing complications if they catch COVID-19.
POGO Counsellors work one-on-one with survivors to help them develop plans and implement strategies to improve their academic or employment success, which in turn supports their mental health and emotional well-being. POGO will expand school- and work-related counselling to childhood cancer survivors, including services for francophone survivors and youth still on treatment, and grow the skill- and community-building Survivor-to-Survivor Network. We will also enhance program evaluation by incorporating outcomes related to survivor mental health and emotional well-being.
This generous investment, the largest donation from a family foundation in POGO’s history, helps POGO achieve an objective of the Childhood Cancer Care Plan to improve access to psychosocial and mental health services for survivors. It also demonstrates confidence and trust by a prominent donor in POGO to positively impact the childhood cancer care system, in particular care for childhood cancer survivors.
The 2021 Survivor to Survivor Network Workshop Series is Coming Soon!
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.
Creative Corner with Kathleen - eNews
Kathleen Landayto is a graduate of George Brown College's Graphic Design program. She loves being a freelance graphic designer, and has recently started illustrating custom pieces for clients. She enjoys the work and loves that it brings her clients joy every time they look at it.
This piece is one of her latest digital drawings. She created it using the Procreate app and applied a watercolour art style. Kathleen says, “With digital art, you can use layers to achieve the final look. I started by defining the body shape, added light and shadow values for depth and finished it off on the 30th layer. This final layer adds minor but important details such as whiskers and fur lines, making the subject come to life.”
Follow Kathleen on Instagram @_kal.art, or email her at k.landayto@gmail.com
Kathleen is an ALL survivor.
COVID-19 Update: What Hospitals are Doing
Childhood cancer centres and POGO Satellite Clinics across Ontario are working diligently to ensure the safety and best outcomes for children with cancer during the COVID-19 pandemic.
For children with cancer, survivors and their families, the best way to reduce the risk of COVID-19 infection is to follow the recommendations outlined by the Ontario Ministry of Health, which can be found here. If you have questions about any specific precautions for your child or yourself, contact your oncologist or nurse.
Throughout Ontario, children with a new cancer diagnosis continue to be evaluated, undergo tests and start treatment with high priority and minimal disruption. POGO Satellite Clinics remain open and are an important component of keeping patients safe and the pediatric cancer system running. The childhood cancer treating centres are taking strong action to reduce the risk for cancer patients by limiting the requirement for well patients to attend the hospital by:
- Connecting through telephone or videoconferencing and rescheduling hospital appointments
- Deferring imaging and blood tests when possible
- Utilizing community-based laboratories for blood tests when possible
This is particularly true for childhood cancer survivors who have been off treatment for several months or more.
If you attend a childhood cancer clinic, extra precautions may cause some inconvenience, for example:
- Symptom screening is occurring at the hospital and clinic entrances
- There may be limitations on the number of adults/family members allowed to accompany a child in the hospital
- Playrooms may be closed
It is important to recognize that these measures are taken to protect survivors, your child and other children, family members, and staff in the hospital.
Your medical team understands that this a very stressful time for children, survivors, parents and families. Please talk to your team about your questions and concerns during this time.
David Hodgson, MD, FRCPC – POGO Medical Director
Paul Gibson, MD, FRCPC – POGO Associate Medical Director
Denise Mills, MN, RN(EC), NP Pediatrics – POGO Clinical Lead, Pediatric Oncology Nursing
Date of last update: January 2021
Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
By Barb Williams
It is surprising to many to hear that childhood cancer does not end with “being cured.” Childhood cancer and brain tumour survivors can develop learning difficulties resulting from their disease or treatment. These late effects may be further complicated by long-term physical effects, as well as emotional problems and mental health issues. It is easy to see how and why these young survivors face struggles in the worlds of work and school. Despite their physical and cognitive challenges, childhood cancer survivors have high aspirations for themselves and are motivated to achieve their goals. The POGO Transitions Program was developed as the result of parents’, patients’ and doctors’ concerns about young students, many with invisible disabilities, falling through the cracks at a critical time in their academic lives—graduating high school and moving on to college, university or work.
The Ups and Downs of Disclosing That You Are a Childhood Cancer Survivor
I want to point out that not all survivors struggle to meet their academic and professional ambitions. For some, the obstacles they experienced due to their childhood cancer have helped build their resilience, discipline and confidence. But there are a significant number of childhood cancer survivors who are grappling with emotional and mental health issues, including anxiety, depression, low self-esteem, low confidence and self-worth—sometimes accompanied by social isolation and bullying. And these issues, as much as their learning challenges, can severely impact their ability to achieve their goals and become independent young adults.
As one of five POGO Counsellors across the province, it is my job to strengthen my clients’ confidence through realistic goal planning and facilitate their transition to post-secondary school and work. While there is a practical element to this in terms of job preparation and academic pathway information and navigation, there is often an emotional component. This is to say, I provide early guidance and career planning, help clients access the appropriate accommodations for school and work, and work with them to ensure their dreams and goals align with their strengths and skills. However, my colleagues and I also help our survivor clients address self-confidence and anxiety issues by listening without judgment and showing we care, and when further psychosocial intervention is required, we make the appropriate referrals. This one-on-one emotional support and encouragement POGO Counsellors provide is highly valued by survivors, as well as their family members who support them.
When I describe my job as working with childhood cancer survivors who experience challenges with school or work as a result of their disease or treatment, the most common reaction I get is how it must be such difficult or depressing work. On the contrary; I get to meet young people on their journey of surviving childhood cancer and planning for their futures, even if there are obstacles to overcome. We envision their next steps and talk about their dreams. I get the opportunity to engage with them in something positive, and if they are not feeling positive, there is a chance, with the rest of the healthcare team, to intervene and set them up for success. These are the things that make our Program so unique, so important and so uplifting. The most exciting thing for me as a POGO Counsellor is to watch my survivor clients’ self-confidence and ability to advocate for themselves increase, witness them rise to challenges they didn’t think themselves capable of, and see them achieve their goals and aspirations.
Barb Williams is the Provincial Coordinator and POGO Counsellor in the Hamilton area for The POGO School and Work Transitions Program (POGO Transitions Program). The Program facilitates a smoother transition for childhood cancer and brain tumour survivors moving on from high school to appropriate post-secondary and work opportunities. This post is based on Barb’s professional experience and the 2020 report The Transition to Meaningful Activity for Childhood Cancer Survivors: Understanding the Role of The POGO School and Work Transitions Program.
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.
POGO CEO Reflects on The Childhood Cancer Care Plan One Year After Launch
Q. Looking back on the past year, which accomplishments stand out for you?
The Childhood Cancer Care Plan was developed by over 200 clinical experts, providing care in clinics and at the bedside day in and day out, as well as parents and survivors, system planners and administrators. It has been wonderful to see many of these same individuals along with new participants readily volunteering their time, expertise and experiences to committees and activities that will drive action on the Plan’s goals.
That said, two other items that particularly stand out, are the launch of the newest POGO Satellite Clinic at Peterborough Regional Heath Centre in fall 2018, bringing care closer to home for patients and their families in that part of the province, and the publication of the latest, high-quality Ontario data in Childhood Cancer in Ontario 1986–2015: A Surveillance Report.
Q. The Plan identifies the need for Champions. Describe how Champions have come on board to help implement the Plan.
The Childhood Cancer Care Plan is a system plan. In addition to POGO, it will take the collaborative efforts of survivors, patients and families, clinical care providers of all types, government, donors and others to achieve its goals. An excellent example of this collaboration is POGO’s work on the Plan’s strategic objective to “promote effective and appropriate care for adolescents and young adults (AYA) treated in all settings.” Adolescents and young adults have unique care needs that require us to bring the best from the childhood and adult cancer care systems.
This year, Champions from across the province—clinical specialists from the POGO network and from Cancer Care Ontario’s adult cancer programs, and survivors of AYA cancer, with the support of the Ministry of Health—have joined forces to identify actions that can be taken to improve care.
Q. Specialized donor-funded support for families, research and survivors is a key driver of the Plan’s success. How has the contribution of donors contributed to moving the goals of the Plan forward?
One of the Plan’s five major goals is to optimize the physical health and emotional well-being of survivors of childhood cancer. Survivors have told us that they are in need of practical and informational resources to help them cope with life after a diagnosis of childhood cancer. With the generous support of an anonymous donor to launch a new initiative and continued funding from The W. Garfield Weston Foundation, POGO has been able to enhance our counselling service for adolescent survivors facing challenges completing school and finding work by introducing the Survivor to Survivor (S2S) Network. With the S2S Network, survivors gain practical skills, build their confidence and connect with others, as they create and deliver informational workshops on key issues for fellow survivors. Feedback from participants so far has been outstanding.
Check out S2S workshop topics and hear from
S2S facilitators about their experience
Donors to POGO also support important research aligned with the Plan’s goals.
Q. This is a provincial plan intended to deliver the best possible care for the best possible outcomes for families, young people with cancer, survivors. What tangible differences are already evident for this population?
The POGO network has been working effectively together to continuously improve the system since POGO created the first Provincial Pediatric Oncology Plan (the Plan’s former name) in the late 1980s. Ontario’s outcomes are among the best in the world. Overall survival from childhood cancer is at an all-time high of 86%.
For children facing a diagnosis of cancer, in alignment with the Plan’s goal of “equitable, appropriate and timely access to emerging and evolving oncology drugs, diagnostics and technologies,” POGO ensures pediatric cancer expertise informs new drug funding policies and continues to lead the process to enable access to the latest collaborative clinical research studies for Ontario’s children facing cancer. POGO’s Therapeutic and Technology Advisory Committee of experts from across the province is now in place to continually scan the new science for opportunities to enhance care in Ontario.
Work also continues to enhance long-term outcomes for survivors of childhood cancer. Most survivors need lifelong monitoring to ensure that the late effects of their disease and its treatment are managed in such a way as to ensure the best quality of life possible. Survivors need reliable access to high quality primary and specialty care but, too often, access to primary care is a challenge. POGO’s Integrated Provincial AfterCare Steering Committee, composed of clinical and survivor representatives, aims to connect each survivor with a primary care provider in their home community and to ensure that primary care providers and the cancer specialists work effectively together to provide optimal monitoring.
Q. When we look ahead one year from now, what are some immediate priorities arising from the Plan?
While our clinical outcomes in Ontario are excellent, there are other important outcomes that need concerted attention. In particular, we hear from the clinical team and parents alike that the Plan’s goal about “ensuring integrated psychosocial care,” and objectives to “enhance supportive care” and “meet educational and information needs” are particularly challenging.
POGO’s guidelines program ensures that Ontario has excellent, internationally recognized, evidence-based supportive care guidelines, but more needs to be done to ensure that the recommendations in those guidelines can be put into day-to-day practice. The benefit of guidelines is real; a US children's hospital, for example, saw a significant decrease in patient vomiting after implementing the POGO guideline for prevention of chemotherapy-induced vomiting. POGO is committed to working with our partners to facilitate evidence-based guideline uptake.
While we made an excellent start this past year, we also have more work to do to meet the Plan’s goal of ensuring “the right data are available and being used to drive an effective childhood cancer system.” We are working with hospital partners to give them the data they need to monitor quality and do local planning, and in turn, contribute to strong province-wide planning. We will also be updating the POGO Surveillance Report this year, and we are working with data partners to improve the information available about AYA cancer.
Most importantly, we look forward to strengthening existing partnerships and developing new ones with organizations that can help advance the Plan’s important goals for childhood cancer patients, families and survivors.
Childhood Cancer: A Mighty Purpose Adapted from Lia Goh’s speech at the 2019 POGO PJ Party
My name is Lia Goh. I am 12 years old and I am a cancer survivor.
When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.
In fact, I don’t remember a lot about my cancer or its treatment.
Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.
I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.
And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.
From the time my brother and I were little, my dad would read a poem to us called “The Champion's Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”
I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.
Watch Lia deliver her full speech here. Video courtesy of Natasha McKenty.
A Healing Journey by Yasmin Nasrati
#BellLetsTalk #mentalhealthawareness
I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.
I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.
My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.
Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.
These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.
I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?
To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.
POGO's Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.