depression Archives

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.

A Healing Journey by Yasmin Nasrati

Posted on January 29, 2019 by Kelly Zorzi

Yasmin Nasrati

#BellLetsTalk #mentalhealthawareness

I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.

I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.

My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.

Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.

These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.

I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?

To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.

POGO’s Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.

Is Overprotective Parenting Linked to Anxiety and Depression?

Posted on January 30, 2018 by Kelly Zorzi

#BellLetsTalk #mentalhealthawareness

Ms. Amanda Sherman, BA, MA, PhD(c), discusses her POGO-funded research study.

Your study looked at overprotective and overcontrolling parenting. Can you give us some examples of these two parenting styles?
I would define overprotection as a style of parenting that does not allow the child or emerging adult to experience stressful things. These parents might try to reduce harm even where the situation doesn’t require it. An overprotective parent might call their child’s friends to solve a problem or insist on driving them to destinations where they can easily walk or ride a bike. It is excessive care. Overcontrolling parenting has more to do with discipline and getting a child to behave in a specific way. A parent might say, “You can’t go out tonight because I don’t like some of your friends.” It is excessive control.

What is non-productive coping?
Coping strategies that are not effective in helping that person feel better (worrying, swearing,
avoidance and isolation, for example) are nonproductive because they may lead to more distress and anxiety. In children, one correlate of the development of anxiety disorders is overprotective parenting.

Are childhood cancer survivors more at risk for depression and anxiety?
When looking at levels of depression, we did not find that our sample differed significantly from normative populations; but we did find that anxiety levels were markedly higher than the general population—participants’ scores on our questionnaire were within one standard deviation from the mean score of people with anxiety disorders. That was surprising to me and something we don’t yet know how to account for. Maybe for this population so much of their childhood was focused on getting better, that learning to cope with stress was less important than getting by and managing their illness. Now they are emerging adults and they are facing the potential late effects of their childhood disease, as well as regular life stresses, and perhaps they are less equipped to cope. These are hard questions to answer.

Amanda Sherman, BA, MA, PhD(c)

Ms. Amanda Sherman, BA, MA, PhD(c) was the recipient of the 2013 POGO Fellowship Award. Her research focused on maternal overprotection/overcontrol and its relationship to coping strategies, anxiety and depression in survivors of childhood cancer. Her study looked at 109 survivors aged 18-30 attending the POGO AfterCare Clinic at Princess Margaret Cancer Centre. POGO AfterCare Clinics monitor survivors at regular intervals so that potential long-term effects of treatment can be identified as early as possible.

You are doing your PhD in psychology. How did your career path lead you to study childhood cancer patients?
I did a practicum placement with Norma D’Agostino at Princess Margaret, where I was doing therapy exclusively with young adult survivors of childhood cancer. We noticed that problems with lack of autonomy, separating from parents and non-productive coping strategies kept coming up.

What can we take away from this research?
Now that we have this evidence that says overprotective parenting and anxiety are an issue in this population, we can target those parents and teach them how to socialize coping in their children. Even the oncologist can spend five minutes asking the parents and children a few targeted questions to
determine if there is a bigger issue, flag it, and refer the family to a psychologist to help them develop better coping skills.

What do you hope will come from your study?
This is preliminary research but even posing the question is opening doors and people are looking for potential issues when perhaps they weren’t looking for them before. Next steps from a research standpoint: our measure of overprotective and overcontrolling parenting needs to be validated and the study needs to be replicated with a non-cancer control group. I want to disseminate this research any way I can.

What does this POGO Fellowship Award do for your career?
This grant has allowed me to have time, space and community to do research. What I have enjoyed so much about POGO is how open minded everyone is about psychosocial issues, and psychosocial development. It has been nice to be accepted and encouraged for studying these kinds of issues, and working with medical professionals has helped provide a different perspective. It has been humbling, rewarding and encouraging at the same time.

Lifting the Veil: Assessing and Treating Depression and Anxiety in Children with Cancer

Posted on November 6, 2015 by admin

VIEW THE PRESENTATION

Presentation Description:
Children and adolescents with cancer may have pre-existing psychiatric diagnoses, and are also vulnerable to developing mood or anxiety problems in the context of the psychological and medical challenges of treatment. When behavioural interventions are not enough, effective psychotropic medication may also be used to treat depression and anxiety. These medications can be used safely in children receiving oncology treatment, although robust studies are lacking.

This presentation described an approach to assessment and treatment for depression and anxiety in youth undergoing treatment for cancer.

Speaker:
Anna C. Muriel, MD, MPH
Chief, Division of Pediatirc Psychosocial Oncology,
Department of Psychosocial Oncology and Palliative Care
Dana Farber Cancer Institute, Boston MA

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