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.
It’s a Privilege to Care for a Child with Cancer
My introduction to POGO started 20+ years ago when I attended my first POGO Symposium. Back then, I craved learning more about pediatric oncology, and there were many POGO educational opportunities from which I could choose.
So, one day (and I am not sure of the exact details of how this happened), I found myself in a car with Dr. Mark Greenberg, a founding member of POGO, Corin Greenberg, POGO’s Executive Director at the time, and another staff nurse. We were on our way to the CBC to participate in an interview about childhood cancer awareness. They wanted a novice nurse’s side of the story along with Mark’s expert thoughts.
I was so nervous. Then came THE question.
“How can you work in pediatric oncology when it is such hard work?”
All of us who work in pediatric oncology either dread or welcome this question. It can be a conversation stopper or it can lead to an opportunity to educate the public about this important cause.
“It is a privilege to care for a child with cancer,” I remember saying.
At the time, I actually thought that I understood what it meant to do this work and I probably did to an extent.
I continued along in my nursing career gaining more knowledge and expertise. I felt good about my practice; I understood my purpose.
Fast forward to six years ago, nearly 15 years after that CBC interview. I found myself caring for my mom in a hospice. I spent hours there watching the healthcare providers at work, wondering, how do they do this?
One day, I was talking with a nurse.
“What kind of nursing do you do?” she asked.
“Pediatric oncology nursing,” I said.
She then shared with me that 15 years before, her daughter had neuroblastoma and had died. We talked for a little bit and on her next night shift, she brought in a photo album, sat with me, and shared stories about her daughter. After, she thanked me for listening and for asking her questions about her daughter. Most people were too uncomfortable to talk with her about her daughter or acknowledge that she had a deceased child. She said that it was always the staff at McMaster Children’s Hospital and SickKids, where her daughter was treated, who understood what she was going through the most and were the easiest to talk to.
That interaction helped me fully understand how the care we provide has an impact on families. And so, to do the best in my work I believe I need the best ongoing education.
The annual POGO symposium is a high-quality conference and—along with POGO’s one-day education events—has played a significant role in my professional education. POGO’s reputation for excellence in education attracts a broad spectrum of healthcare providers to present and learn about topics related to survivor care, standards of care at POGO Satellite Clinics and research.
And through my work with POGO I can be a champion of childhood cancer care with the general public and educate healthcare providers across the province.
To this day, I still say that it is a privilege to care for a child with cancer and their family. After all, where else can you go to work and get hugs and high fives (from the kids) all day long?
Denise Mills, MN, NP Pediatrics, works at The Hospital for Sick Children in the Solid Tumour, New Agents and Innovative Therapy, MIBG Program. She is co-chair of the POGO Nursing Committee and a past member of the POGO Board of Directors. She was a member of the planning committee for the 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer and the Pre-Symposium Nursing Seminar. Denise is also a recipient of a POGO Seed Grant to fund her study “Improving Quality and Consistency in Family Education Prior to First Discharge Following a Pediatric Cancer Diagnosis.”
Finding Strength by Embracing my Vulnerability
Dealing with trauma, anxiety and depression as a two-time leukemia survivor, Marell Tomeh shares her story
When I was 19, I was starting to make decisions about where my life would take me. I was planning a trip with friends, working hard at university and thinking long-term about my aspirations. This came to a sudden halt the moment I was diagnosed with acute lymphoblastic leukemia.
I cancelled my trip, but didn’t want to burden my friends with my bad news. I had always been the one to support other people, rarely asking for help myself. To protect my vulnerability and preserve some sense of normalcy, I kept my diagnosis private, and in retrospect, this is probably the worst thing I could have done.
I spent much of the next two years of my treatment worrying about who knew what, and about people seeing me without hair and potentially judging my significant weight gain, not knowing the steroids I was taking contributed to this. The medication caused my mood to fluctuate, making my mental health harder to manage. I had trouble managing my expectations of myself, comparing myself to my peers and feeling a sense of urgency to “catch up.”
I fell into a deep depression and it took some time to acknowledge it and admit that I was struggling. I became more and more anxious in public and social settings. I developed a stutter and felt as though I had lost my sense of humour and ability to engage in conversation. Socializing became awkward and uncomfortable, and schoolwork became frustrating.
A few years after my treatment ended, I relapsed. This time, I needed a bone marrow donor and had no choice but to open up about my cancer. This made a huge difference in my mental health and my healing. I stopped seeing vulnerability as a weakness and, as a result, quit being so afraid.
A cancer diagnosis interrupts life. As a young adult with cancer I feel like my life milestones have been pushed back and I am falling further behind all of my peers. Before my diagnosis, I took pride in knowing I worked well under pressure and could multitask with ease. I thought getting back to school would help me get back to ”normal,” but I am still struggling with “chemo brain’” and dealing with the repercussions—mental and physical—that come with cancer, and find it all too stressful and overwhelming.
Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
After going through something as traumatic as cancer, my stress response has become more sensitive. So, I have decided to take some time away from school and work to care for myself. I am re-examining my priorities and figuring out how to build a meaningful life that can also support my real-world concerns, like finding health coverage for my ongoing medical expenses.
My goal is to use my cancer experience to help other people. I want to create a safe space for other patients and survivors to express themselves and support their healing. Nothing good comes from leaving your wounds unattended but we can find strength in acknowledging and embracing them.
Marell Tomeh is a two-time leukemia survivor and bone marrow transplant recipient. As a young adult cancer survivor, Marell shares her story and hopes to shed light on the obstacles associated with trauma, anxiety and depression.
Marell shared her story first-hand on May 14 at 2021 POGO AfterCare Education Day, where she spoke about The Lived Experience: Navigating School and Work after Cancer.
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 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
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
Far From Home When Your Child Has Cancer
By Stephanie Lacasse
The day I took my daughter Isabelle to the hospital, I was expecting to pick up a prescription for her and make my way to daycare to pick up my twins, Nicholas and Maxime, before meeting my eldest, Zacharie, at the bus from school. But when the doctor at our local hospital asked me to take a seat, I knew we were in for a much worse scenario. He told me her red and white blood cells were low—very low. He said it was likely cancer but they didn’t know what kind. He called ahead to the hospital in Sudbury and sent me straight there.
My husband, Joel, met us at the Northeast Cancer Centre and after a few more tests, we were told they were sending Isabelle to Toronto immediately. Only one parent could accompany her on the plane so being the more experienced driver, Joel made the six-hour drive to the city. I made arrangements for my best friend and my mom to pick up and take care of the kids, and we left. I had no idea I would not return home again for another 48 days.
“The first few times Isabelle got a lumbar puncture, I couldn’t breathe. Parents are not allowed in the room during the procedure and I just stood on the other side of the door paralyzed.”
- Stephanie Lacasse
Isabelle was diagnosed with acute lymphoblastic leukemia (ALL). The doctor told us the prognosis for kids with ALL is typically very good and the survival rate is high. We were so relieved; we decided to keep our sights on the end and buckle down for a fight. But the next few weeks were hideous and challenged us all in many ways. The intravenous needle in Isabelle’s hand kept coming out in her sleep and blood would spurt everywhere. She developed high blood pressure, severe pains in her belly due to constipation from the drugs and an infection where the port was implanted to deliver her meds. Isabelle also contracted C-difficile, a bacterial infection causing diarrhea, which completely wiped her out to the point she had no muscle mass in her legs and she had to learn to walk again. But the scariest thing for us was her non-responsive episodes which lasted for several minutes each time. Tests revealed that Isabelle had developed a blood clot in her brain from the original chemotherapy and she would require blood thinners delivered by needle twice a day for over a year. Joel took a month off work, but when we could not handle that financially anymore, he returned to his job and I stayed in Toronto to care for Isabelle by myself.
I haven’t been able to go back to work. Joel works out of town, one week on and one week off, so when he is not with us I am the one navigating this world of blood tests and chemotherapy while coordinating care for the rest of my family.
Luckily, most of Isabelle’s care takes place an hour away at the POGO Satellite Clinic at the Northeast Cancer Centre in Sudbury. This saves me the gruelling six-hour drive with a nauseous child in the back seat and means more time at home with my kids and my husband. The nurses at the clinic go above and beyond when it comes to connecting us to resources, especially when I do have to make the trip back to Toronto for aspects of Isabelle’s treatment that cannot be handled in Sudbury. Our family is incredibly grateful for the support that we have received.
Read more to learn how POGO Interlink Nurses support children with cancer and their families.
Having a child with cancer takes its toll on the other kids, the household, the marriage, but we seem to be getting back to normal lately—or at least a new normal. My beautiful little girl is four years old now. She doesn’t need to sit on my lap anymore when she gets her blood work done and loves taking the bus to school by herself. She is one tough little cookie.
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.
