AfterCare Archives

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.

POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care

Posted on June 30, 2020 by Claire Slaughter

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.

A Genetic Mutation: A Lifetime of Cancer Screening

Posted on May 28, 2019 by Kelly Zorzi

Yasmin Nasrati

Adapted from Yasmin Nasrati’s speech at the the annual Cadillac Fairview Run

When I was a kid, my big brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Sadly he passed away. He was only 12 years old.

Shortly after his death, his oncologist at SickKids Hospital suggested that all of his siblings get genetic testing. That is when my family learned that I have an inherited gene mutation, which increases my risk of acquiring malignancies and other serious health concerns. And so began my lifelong annual cancer screening.

I was 7 years old.

Because of the regular screenings, they discovered my brain tumour early. At age 13, I received 33 daily radiation treatments and I was cured….per se, but I have certain side effects because of it.

This might shock you, but I am actually a four-time cancer survivor.

At age 15, I was diagnosed with cancer of my small bowel— and treated with surgery and 12 cycles of chemotherapy.

When I turned 18, I aged-out of the pediatric system. This was a very stressful time because all of the staff at SickKids Hospital are trained to take care of children, both physically and emotionally, so I felt very safe. At 18, I was still really young and didn’t feel ready to leave the children’s hospital.

My regular cancer screenings continued at Princess Margaret Hospital. At age 22, I was diagnosed and treated for colorectal cancer and a year later, breast cancer.

In addition to screening, I am monitored at the POGO AfterCare Clinic on a regular basis for late effects. Actually all survivors are monitored, not just those with a genetic mutation. This is because even though the survival rate is up to 86%, as many as 60% of young adults will face a lifetime of complications that are a direct result of their childhood cancer or the treatment they received.

One of these complications is learning difficulties, including slowed rate of information processing, poor working memory, increased forgetfulness and more. These are all things that I struggle with on a daily basis.

I am 23 years old, and at this stage in my life, my education is my main priority, but for a while, my success at school was at risk. It was through my nurse practitioner at the AfterCare clinic that I was introduced to my POGO counsellor.

POGO’s academic and vocational counselling program is a donor-funded program that provides personalized support for childhood cancer survivors who need extra help to transition from high school on to college, university or into a vocational program.

Counsellors work one-on-one with survivors to provide them with special accommodations to complete tests and schoolwork; to help them match their career goals with their abilities; to facilitate scholarships targeted at survivors; and link survivors with the appropriate disability services and supports within colleges, universities or the community.

I am proud to say that I am now a college graduate and currently a student in York University’s Sociology and Human Rights Programs.

By Yasmin Nasrati

I recently had the opportunity to represent both the Hospital for Sick Children and POGO at the annual Cadillac Fairview Run/Walk, which raised $250,000 through sponsorship and employee participation.

The Burden of Surviving Childhood Cancer – by Leanne Brown

Posted on June 13, 2018 by Kelly Zorzi

When I was 10 months old, I had persistent raspy breathing that everyone thought was a cold or allergies. Then one night I stopped breathing. I was rushed to the hospital, x-rayed and sent to The Hospital for Sick Children where they found a tumour the size of a grapefruit wrapped around two vertebrae in my upper spine—neuroblastoma was the diagnosis. I was rushed into surgery to remove the tumour and a large portion of muscle and tissue out of my back. My chances of surviving were 5 – 10% and my parents were told that if I DID survive, I would likely be paralyzed.

Leanne Brown with her children Greg and Beth

After cobalt radiation treatment, I went into remission at 18 months old and never relapsed. As I grew up, my doctors explained to me the side effects I was experiencing, those that might still come, my inability to have children, and the fact that my life expectancy was not the same as my peers. For the rest of my life, cancer and I will walk together in some form. That is my basic medical story, but it is not my whole story. While most childhood cancer survivors become well adjusted adults, many have an affected sense of self and some may experience depression, anxiety or other mental health issues.

Watch Straight Talk: Emotional Health After Childhood Cancer

One rarely discussed issue is something I have been through, and most survivors I know have experienced: survivor guilt. It’s a hard concept to wrap your head around until you understand where it originates.

Growing up, many of the children who were treated alongside me did not survive; including a
friend who was very special to me. For a long time after he passed I felt guilty for living, in fact
I still do sometimes when another life is lost. But the feelings of responsibility don’t end there.
Logical or not, many survivors feel guilty for the sacrifices our parents had to make, for the social
and emotional challenges our siblings went through, and even for being who we are, rather
than super humans doing extraordinary things. There is a burden to be better than “normal.”

As an adult, the feelings have never really gone away, but I have found ways to deal with them.
As a teenager and young adult, the guilt, coupled with the deeper understanding of my own
mortality and no one to relate to, was very isolating. That is why I try to address the topic with
other childhood cancer survivors, especially the younger generation. It has catalyzed many
interesting and emotional conversations, and in some cases, provided a space for people to
voice something they have never said aloud before.

Leanne Brown has been a speaker at the biannual POGO Survivor Conference and POGO AfterCare Education Day. Although she was told she would never have the physical strength and endurance of her peers, she embraces life by skiing, running, hiking, camping and canoeing, and she even completed a half marathon in 2013. Leanne lives with her two children in Ottawa.

When Your Tumour Leaves You With a Disability – by Noah Severino

Posted on April 4, 2018 by Kelly Zorzi

Noah Severino

I was 9 years old when I was diagnosed with late stage rhabdomyosarcoma. I had been experiencing chronic fatigue, migraines and tingling in my face for over two months, but none of the doctors could find anything wrong. Then one morning I woke up and I was completely blind in my right eye.

The ophthalmologist found no reason for me to lose my sight so he ordered an emergency CT scan. I remember the pediatrician on call coming out of the viewing room and saying to my mom, “You need to get to SickKids Hospital right now; they are waiting for you.”

A tumour had basically encapsulated my brain and was moving; the doctors thought I was 24 – 48 hours away from dying. They started me on emergency chemo and radiation before they could even put a name to what I had. All in all, I had a total of 50 rounds of chemo and 30 rounds of radiation over the course of a year. Radiation caused third-degree burns on my cheek, head, in my mouth and down my esophagus, so eating was a real challenge. I used to drink coffee creamers to keep my weight up and because my mouth was so raw.

My tumour was so aggressive and advanced when I was diagnosed, that doctors wondered whether I would be able to overcome it. They wondered if I would be functional or articulate after such intense treatment, but here I am, 13 years later, a university graduate and am thankfully cancer-free.

Anyone who knows a childhood cancer survivor knows that life doesn’t just return to normal when you are declared cured. The tumour severed my optic nerve and I am completely blind in one eye. The radiation permanently damaged my thyroid and my pituitary gland, and for a long time my tear ducts and salivary glands were not functional. I still live with daily headaches that range from two to nine on the pain scale.

I have annual checkups at my POGO AfterCare Clinic. They are monitoring me for secondary cancers (because of all the radiation) and cardiac issues that may arise due to the type of chemotherapy I had. I get regular MRIs to look for brain tumours and I am thankful that my results have been clear.

As you can imagine, a brain tumour, radiation to the head and a year out of school can put a kid at a disadvantage academically.

I was luckier than other childhood cancer survivors in the same situation in that a neighbour who was a retired teacher offered to be my private tutor to help me catch up—I was actually working at a higher level than my peers at one point. Still, I find school challenging (albeit a welcome one) and use special accommodations, like a note taker to help supplement my own notes in case I experience writing fatigue or a migraine.

Watch Straight Talk: Assistive Technology after Childhood Cancer

Counsellors in POGO’s Successful Academic and Vocational Transition Initiative (SAVTI for short) work one-on-one with survivors like me to help us achieve our academic and employment goals. A HUGE challenge for me has been disclosing my disability when applying for a job. No one wants to hear that a potential employee isn’t going to be able to type quickly, or won’t show up for work some days because of the headaches and chronic pain he has to deal with.

SAVTI is funded entirely by donations from the private sector. DONATE TODAY.

Between some of the workshops I have attended, help from my family and talking one-on-one with my counsellor, I have the tools I need to advocate for myself. It is very intimidating to put yourself out there, but I have gained the confidence I need to say, “I’m a childhood cancer survivor and as a result of my treatments this is what I have to deal with, but I promise you I’m a hard worker and you will be happy with what I can do.”

I can honestly say that if I could go back in time and take away my cancer experience, I don’t think I would. It has shaped my goals and made me who I am. My hope is to one day work with other childhood cancer survivors or kids with serious illnesses to help them grow and be the best they can be.

Through his work with his POGO Counsellor, Noah received a number of post-secondary scholarships and graduated with a (Honours) Bachelor of Humanities from Carleton University. Noah was recently accepted into the Masters of Management program at the Schulich School of Business at York University.

POGO

Blog

Tag: AfterCare