childhood cancer survivors Archives

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.

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

A Search for Health Care beyond Survival: Rabi’s Story

Posted on June 24, 2021 by Claire Slaughter

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

Posted on March 11, 2021 by Claire Slaughter

$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!

Posted on February 26, 2021 by Kirsten Efremov

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.

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