Creative Corner with Holly
Holly Bokor's Port Illustration
Port is part of a triptych* of self-portraits about my memories from when I had cancer at age 14. A lot of medical experiences and journeys can result in feeling dehumanized, objectified. Port focuses on the wires and tools, with no identifying features of the figure. The background contains scans of old documentation from my own treatment. Though it’s a drawing of myself, the sense of identity is purposefully removed. It reflects my feelings of emotional detachment. Essentially, it’s an attempt to capture that strange dissociation that occurred while I was in treatment.
*Artwork made up of three pieces or panels
Holly is a recent graduate of Seneca College's illustration program. They find solace in expressing thoughts through line. You can find more of their work at congercine.com.
Survivor’s Childhood Cancer Experience Inspires her Career in Pediatric Oncology Nursing
Kafia Ibrahim is a registered nurse whose personal experience as a two-time childhood cancer survivor inspired her career path. She works in the haematology/oncology unit at The Hospital for Sick Children (SickKids) in Toronto and attributes some of her success to touchpoints she had with a POGO Interlink Nurse while in treatment and a POGO Counsellor after treatment.
Kafia was diagnosed with rhabdomyosarcoma, a soft tissue cancer, when she was eight years old. Her treatment involved chemotherapy and radiation. At 15, Kafia relapsed and faced a second diagnosis of another soft tissue cancer. This time, surgery and chemo were part of her treatment protocol.
“I was too young to remember the details,” Kafia says “but I know that from the time I was diagnosed, my family had very positive experiences with Tina, my POGO Interlink Nurse. I attended Campfire Circle (formerly Camp Ooch and Camp Trillium) because of her and made lifelong friends, and she came to our home and connected us to many community and financial supports.”
Related Content: Surviving Childhood Cancer: From Confidence Buster to Confidence Builder
After her treatment ended, Kafia faced many challenges pursuing her academic and career goals.
“Those challenges were a result of the side effects of treatment,” she explains. “With nothing to control my pain and the resulting negative impact this had on my mental health, it took me longer than usual to finish high school. In Grade 10, I went from online school, to alternative school and back online. I utilized many of the services of the POGO School and Work Transitions Program during this time. When I was finally able to finish high school, my POGO Counsellor, Lucie, helped me with my university applications. She also notified me of scholarships that I would be eligible to apply for, and I received one from Childhood Cancer Canada. My POGO Counsellor also helped me get extra time for tests at school, something I didn’t even know was possible. She helped me know my rights and build my confidence to ask for what I needed. I don’t know if I would have done as well as I did if it were not for my POGO Counsellor.”
Wonderful nurses made an impact
While Kafia’s experiences through her cancer journey were not all great, the positive ones led to her career decision.
“I have had my fair share of experience with healthcare providers, especially nurses,” says Kafia. “I’ve experienced the good, the bad and the ugly. The amount of influence that nurses can have on a patient’s experience with their disease is more than one would expect. I still remember the wonderful nurses that helped get me through some of my hardest days. Whether it was singing my favourite song with me, celebrating my 16th birthday when I was in-patient or providing me with a shoulder to cry on when things got too much. I want to be able to provide this personal connection for another child and their family that may be going through a similar situation.”
Related Content: Returning to School after a Cancer Diagnosis? Ask for Help!
Gaining invaluable on-the-job experience
From 2019 to 2020, while in her nursing program, Kafia had the opportunity to work as a clinical extern at SickKids. In this mentored nursing assistant role in the haematology/oncology unit, she gained invaluable experience. She got to know families and found many ways to offer them respite, like staying at their child’s beside so they could take a coffee break. Remembering how bored she was as a patient, Kafia made it a point to entertain her patients. She learned the importance of building trusted relationships. Also, working in the hospital where she had received treatment was a way to see if any underlying or unresolved emotions would surface that might get in the way of her career success. Thankfully, none did!
“This job allows me to meet the bravest people. I feel like my experience with cancer allows me to see the bigger picture when providing care to patients and their families. My career plans include becoming a POGO Interlink Nurse in 3 to 5 years and finding ways to better support the transition from pediatric to adult care for childhood cancer patients. When I see the impact that my care can have on patients, it motivates me to work harder.”
Kafia Ibrahim is a registered nurse at The Hospital for Sick Children. She earned her Bachelor of Science in Nursing from the Seneca/York Collaborative Program. She is a two-time childhood cancer survivor. Her POGO Interlink Nurse and POGO Counsellor inspired and supported her career goals.
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!”
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.
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!
Poop and Farts: The Inside Scoop on My Colonoscopy
Now, many people will tell you that going through cancer changes you and gives you a new outlook on life, and in many cases, that is true. That said, I think it is safe to say that much of my personality has remained the same from before my treatment. This year I’ll be turning 36 years old and I’ve been cancer-free for over 20 years. I believe that one specific aspect of my personality aligns with most people’s inner child:
"I think poop and farts are hilarious!"
Is it childish and gross-out humour of the lowest order? Yes, but it is still funny. I mean, a well-timed fart or good old poop joke still has me laughing. And my juvenile sense of humour has been somewhat useful when I go to my check-ups, where, inevitably, one of the questions I get is about poop or, in medical terms, “bowel movements.” Due to my treatment, my pancreas doesn’t entirely work and things can get a bit messy, so, it’s possible that I get the poop questions more than others do.
Anyway, during one of my recent POGO AfterCare Clinic appointments, my health team suggested that I get a colonoscopy due to the type of cancer treatment I received as a child and the fact that there is some family history of colon cancer on my dad’s side. (This part was not funny.)
Both my parents have had colonoscopies, and they offered some advice based on their experience, like do not eat certain Jell-O colours as they dye your insides. But, most importantly, they told me that in both their experiences, the worst part was not the procedure itself but the purge the day before.
For those of you unaware of the process, a few days before a colonoscopy, you start a low-fibre diet with no red meats. The day before, you can only have clear liquids and take what I would call “super laxatives”...and oh boy, do they work. One of the late effects of my cancer and treatment that I regularly deal with is spending more time close to the bathroom, but this was on a whole other level. I believe several texts to my mother included the words, “Oh God, why won’t it stop?”
The actual colonoscopy wasn’t that bad. I experienced a slight discomfort at first, but that was about it. And it is really freaky to watch the camera work its way through your colon.
During my procedure, they found a total of seven polyps (this is a lot). Luckily, the gastroenterologist was able to remove all of them and the lab results showed none were cancerous. The bad news is that because they found so many, I have to go back in three years rather than the regular ten.
While I don’t look forward to my next visit, I’m glad that I went because now I know that my colon is healthy at the moment and that the polyps that were removed don’t have the chance to turn into something much worse. One of the many benefits of going to a POGO AfterCare Clinic is that the doctors know your diagnosis, treatment protocol and what late effects need to be monitored.
Believe me, as a pessimist, I know that it sucks to go through the hassles of test after test, and I find myself thinking, “What if?” But I just remember that if they do find something, it’s better if they find it earlier rather than later.
On the positive side, I now have medical proof that I have a tight butt; I refuse to look at it any other way!
You can read more about Jamie’s cancer experiences including his challenges with mental health and his brush with hockey fame.
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.