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Presentations Help Survivors Build Skills

Posted on February 17, 2022 by Kirsten Efremov

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

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

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

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

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

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

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

Posted on February 17, 2022 by Kirsten Efremov

A conversation with POGO Transitions Counsellor Sarah Brandon and her respected colleague Dr. Ewurabena Simpson.

Dr. Ewurabena Simpson is a staff physician in the Division of Hematology/Oncology at CHEO where she works with childhood cancer patients. She is also the Program Lead for CHEO’s Sickle Cell Disease Program, the Assistant Dean for Equity, Diversity and Inclusion at the University of Ottawa Faculty of Medicine, as well as an Assistant Professor. Outside of work, Dr. Simpson is a proud mum and family member, an avid tennis fan and a seriously outstanding soccer player.

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

Posted on August 9, 2021 by Kirsten Efremov

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!

Posted on August 9, 2021 by Kirsten Efremov

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

Posted on August 9, 2021 by Jamie Irvine

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.

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