Our special guest today wasDr. Maisam Najafizada π
Dr. Najafizada is the interim Assistant Dean of Social Accountability and an assistant professor of Health Policy at the Faculty of Medicine, Memorial University.
In this episode:
Dr. Najafizada and Sevtap chat about everything from what it means to have a patient-centered cancer care to the current state of healthcare in Canada, existing barriers and opportunities, and social accountability activities
There is something exciting and useful information for everyone in this episode, from cancer care to science and health policy
Our kids also get cancer – let’s not forget them when we talk or think about how to control and win over cancer.
In Canada, every year around 1,000 kids will be diagnosed with cancer. Sadly, we will also lose around 200 kids to cancer annually.
Pediatric cancers have impacts on the kids, their parents & siblings, friend, and extended family.
In this podcast, we talked with Alan Winnett, a parent of a child with a history of cancer and a board member for NL CandleLighters, a local charity and community support organization in NL focusing on pediatric cancers.
Check this podcast to learn the perspectives and experience by Alan and the many support programs available to families affected by pediatric cancers through the NL CandleLighters.
We are pleased to say that the registration for the “DOCUMENTARY SCREENING AND PANEL DISCUSSION EVENT FOCUSING ON TRANSGENDER INDIVIDUALS WITH CANCER” is now open!
We cannot wait to screen the documentary called Trans Dudes with Lady Cancer and have discussions with a panel of transgender folks with a lived cancer experience, healthcare providers, and advocates.
Come join us.
This event is organized by The Public Interest Group on Cancer Research and Quadrangle NL, a local 2SLGBTQIA+ organization.
We gratefully acknowledge Office of Public Engagement for funding and NLSUPPORT for supporting this event.
Our special guests today is Geoff Eaton, the Director of Young Adult Cancer Canada (YACC).
In this episode:
We talk about Geoffβs experience as a young person diagnosed with cancer, how this shaped his leadership and community work, activities and support provided by YACC to young adults diagnosed with cancer in Canada, and more.
Additionally, at the end Sevtap gives brief info about young adult cancers in Canada β what are they? How many folks are affected? What are the main priorities in addressing young adult cancers?
Take a look and hope you will enjoy this episode as much as Geoff and Sevtap have.
These guest blogs are written by folks affected by cancer – either directly or indirectly. You can find them here, here, here, here, and here.
I read all of them multiple times.
And all of them have left prints in my memory.
Being a cancer scientist does not make me immune to cancer’s effects.
In this blog, I open a bit about the impact of reading the stories of cancer patient and family members.
Reading Jennaβs blog, I felt an extraordinary pride for this young person and their resilience and advocacy. It must have been hard to go through her momβs diagnosis. I cannot imagine facing this experience at a young age. But she is resilient and very informed. Her powerful words make me so much hopeful that things will change in healthcare. Wishing Jenna, her partner, and her mom happy and healthy decades ahead.
With Deannaβs blog, I felt pain, but also tremendous hope for Deanna and all other folks who were young but got late stage cancers, and went through a lot during their journey. We recorded Deannaβs talk (as per her preference) and then turned the transcript into her blog. Remembering Deannaβs voice and the way she spoke during that recording makes me cry each time.
It does.
This is how impactful her words and story are.
Darrellβs twoblogs pierced my heart. I got to remember the hopelessness the family members and caregivers in my family may have experienced during our cancer journeys. When someone dear to you is diagnosed with a disease like cancer, you want to do everything in your power to get them better. Sometimes it works, sometimes it does not. But sometimes all what matters is whether you have tried enough. RIP Darrellβs dad β know that you have a wonderful family who continues to advocate on behalf of the folks affected by cancer.
And with Namikoβs blog, I felt that pride again. Being proud of knowing this person and admiring their messages and words. Namiko describes her cancer journey and gives us hope with her story. Her transformation β from shocked new patient to someone recovered, stronger, and doing advocacy β must inspire many folks.
And personally, Namiko also represents folks like me, who are not from here but made here home and are non-native English speakers in the clinic. Do we get to express ourselves well as non-native English speakers? Do we have opportunities to communicate better in the clinic, for better health care, treatment, and recovery? She made me appreciate her representation and advocacy at a whole new level. Thank you Namiko. Thank you so much.
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In addition to these guest blog posts, we also chat with folks in our podcasts.
I hope you all will find something interesting or resonating while reading our blogs and listening to our podcasts.
Whatever happens, I want you to know that you are not alone.
If you are a member of the cancer community, join us and other advocates so that the next person, the next family, the next patient will have better chances and conditions.
1 in 8 women is diagnosed with breast cancer in their lifetime.
I was diagnosed with breast cancer in spring 2020 shortly after the world was placed under the first COVID-19 lockdown. With coughs and a choking feeling, I thought I had COVID-19 positive. Instead, it was cancer.
Upon hearing that news, I went in complete shock.
Since there is a history of cancer in my family, I had prepared myself for this date, but not at the age of 41! I just got married, just rescued a puppy, just talked about starting family…
Suddenly my life was turned upside down and I feared for my day life, my body or my future. Has it spread? Can it be treated? What are my treatment options? Would I make it?
I was distressed, anxious and overwhelmed by the uncertainty, and cried for days and nights thinking about the possibility of the worst.
Although cancer treatments and outcomes have greatly improved in recent years, it can still be frightening to hear the word “cancer“.
My cancer journey began with many appointments and tests such as CT scan, X-ray, bone scan, heart scan or blood work. I strongly recommend you to have a pocket planner handy so that you can manage and record all appointments.
As a new cancer patient, I wanted some professionals to assist me and family or simply tell us what happens next.
There are cancer patient navigators across the province who support you and your family throughout your cancer journey. They provide information about services and resources that are available to you and your family, look up next appointment time when you lost your notes or become liaisons between you and medical team. I had one amazing nurse navigator who was always there for me and guided me when I was lost in Cancerland.
My treatment plan was set for chemotherapy, surgery and radiation therapy, and my first chemo started in the midst of pandemic. Sadly, I was not able to bring anyone with me for the beginning of my cancer care appointments due to COVID-19 restrictions. This included my very first appointment at Cancer Centre to meet oncologist and discuss about the treatment options.
Imagine this: You are there alone already distressed by cancer diagnosis, you feel numb at times with huge amount of information given by your medical staffs, and on top of that English is not your mother tongue. You want someone to comfort you and remember what you hear. But you are there alone.
I went in all 7 sessions of chemo alone, wished someone stay with me while I was hooked on IV for 5-6 hours. It was one of the cruelest time period of my cancer care.
Having cancer is awful, and no one deserves cancer.
Before cancer diagnosis I was outgoing, optimistic, independent and the one who takes care of everyone else. After the diagnosis I was struggling with anxiety and fear, and that easily took me into a very dark time or a lot of sleepless nights. More I felt weak inside, more I tried to look strong outside.
However, not showing my real emotions was uncomfortable and exhausting, and I was losing control of my life on a rollercoaster in Cancerland. My cancer diagnosis had a significant impact on my husband too.
It is an obvious fact that cancer diagnosis can affect the emotional health of patients and families.
Thankfully, I met a wonderful oncology social worker through cancer patient navigator and was able to address my concerns at each counseling. Having someone neutral to talk things through with really helped lower my anxiety and fear. Note that it is important to share your feelings and thoughts with your care team (or anyone) because it will help you manage the stress, as well as it will lead to find positive coping strategies or the way of dealing with cancer treatment.
Then, there was a hope.
After many tears and 10 months of ups and downs, I have come out on the other side stronger than ever. I will never forget the feeling that I had on my last day of radiation when I rang Hope Bell. Yes, I got through it!
I had been given a second chance at life.
Everyone’s cancer journey is different. For most of people it is a life-changing experience. For me it was also a gift because I am a better person after cancer. I did not choose breast cancer, however, I chose who I was going to be after cancer diagnosis and changed my life for the better as a result. Now I know what I am capable of, or how to manage my emotions, and appreciate every lesson that cancer has taught me.
Surviving cancer is a major accomplishment.
With adjusting my emotional and physical changes, now I live a βnew normalβ life and enjoy it to the fullest. I am not afraid of talking about my cancer history anymore.
Thanks to this research group for giving me a wonderful opportunity to speak out. I am grateful for being a part of this amazing team, and assured that our work will lead to improve cancer care in Newfoundland and Labrador, and help future cancer patients and families.
Once cancer survivors saved my life, now it is my turn to save someoneβs.
Together letβs take one day at a time.
Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider. The website owners are not responsible for the contents of the guest blog posts.
This guest blog is a part of a public β scientist collaborative project led by the Public Interest Group on Cancer Research in Newfoundland and Labrador, Canada. For further information, please see here: mun.yaffle.ca/projects/15039.
Kayla Crichton and Sevtap Savas, PhD talked to two young MUN students who are co-chairing the Relay For Life 2024 event for Memorial University of Newfoundland: Emma McIsaac and Sophia Ryan
Relay for Life is organized by Canadian Cancer Society to raise funds and awareness about cancer.
These two young leaders have given us a future vision without cancer, & hope with their enormous motivation and interest to help others going through cancer, and their leadership.
We also share information about Canadian Cancer Society’s importance and contributions to cancer research funding and support provided to cancer patients and families.
On behalf of the entire Public Interest Group on Cancer Research, Thank you Kayla, Thank you Emma, and Thank you Sophia.
FUTURE IS BRIGHT
Episode 4 β βThere is a future where we do not have to worry about cancerβ: Vision by two young leaders – Sophia Ryan and Emma McIsaac
Disclaimer: This conversation is posted publicly for the purposes of education and/or sharing perspectives. The information shared by speakers should not be interpreted as medical advice. All health information should be discussed with your health care provider. The website owners are not responsible for the contents of the guest speakers.
This conversation is generated as a part of a public β scientist collaborative project led by the Public Interest Group on Cancer Research in Newfoundland and Labrador, Canada. For further information, please see here: mun.yaffle.ca/projects/15039.
5. What are the opportunities or new ideas that can make a difference in patient health and outcomes in NL?
This is strictly my opinion, and based on my specific experience with my dad’s treatment, online research, and unofficial consultation with friends of mine working in a variety of healthcare positions across Canada; I have a very strong opinion in how traditional treatment and integrative oncology care work together in NL.
It seems that in other provinces across Canada, the two approaches become more and more in sync, and therefore helps in expanding treatment options. Throughout my dad’s cancer battle, he was accessing complementary care along with chemotherapy (and several surgeries). We believe that it kept my dad in relatively good health when taking chemo. His oncologists were very pleased with how he responded, and his overall well being despite aggressive chemo, and I am steadfast is accepting that it was due to additional care. His acceptance into the clinical trial, and immunotherapy that followed, was likely a result of dad’s ability to maintain an unexpected level of good health throughout his journey – We can’t lose sight of the fact that my dad was near 80 years old, and battling aggressive colorectal cancer. This is why research is so important.
We as a family all knew where we were headed, albeit difficult to accept. We knew the cancer would eventually come out on top as it often does, but he battled this disease for 4 years, and up until his final week, his health, his well-being, his attitude, his ability to fight infections, his recovery time from chemo and surgeries, etc., were all outside the norm.
I have everyone to thank for this; his chemo oncologists, his surgeons, doctors and nurses, the team in Billings Montana, and his complementary care team. Everyone! There’s no magical treatment recipe and everyone’s cancer is different, but I believe that we need to treat EVERY proven option as legitimate as the next, and create an environment where patients and their families can consider all methods, work with traditional and complementary care, and design a custom treatment regiment, tailor-made for the individual. Everyone is unique. Treatment should align with this.
6. What advice can you give us researchers and advocates?
Given my involvement with this research group, my advice is to stay the course, continue to grow and expand, and consider every option and idea. We may just find a ground-breaking idea in the least likely place.
7. How can we better help our community members affected by cancer?
Since my family was (and still is) impacted by cancer, I can honestly say that our access to treatment was excellent due to our location on the island, and proximity to the cancer center.
Workplace and financial support were not an issue thankfully, and our empowerment came from within, and was a product of great family support. I am thankful for that, as I know dad sure was. However, everyoneβs situation is unique, and not everyone has the luxury of living close to the city, or a support system that can help take the pressure off during the challenges of treatments, emotions, finances, travel, etc.
There needs to be options, not only in treatment as discussed previously, but in accessibility to take full advantage of what’s available. I wish for everyone affected by cancer, to have immediate and close access to care, where families do not have to travel, whether it be a long drive across the island, or a flight from Labrador to the island. I expect that those who are physically isolated, and financially incapable, feel a discrimination, as their situation is out of their control.
Yes, we choose where to live, and our own career paths, and so on, but no one chooses cancer. In our case, dad was fortunate to have access to an immunotherapy that could have extended his life – we feel it did, just not as long as we would have hoped. But he and mom had to fly to the US every 6 weeks for a 1-day treatment! This is one of countless examples of the measures people take to beat this disease, and I don’t think anyone should have to do this.
So, what can we do?
Honestly, I don’t know, but we should not be limited. I know what I’d like to see happen, but I understand that we can’t simply wave a magic wand and make it so. That’s not to say we can’t research this, and take the necessary steps to improve our health care. This is what I wish for.
8. Do you have any recommendations to local government and healthcare system leaders in Newfoundland and Labrador to help reduce cancerβs effects on us?
I would recommend to our government and healthcare leaders to listen, and recognize that we have issues to address.
The first step, after all, is recognizing that a problem exists.
We need more health care professionals in remote areas, offering the same care we offer on the metro region.
We need to create an environment that attracts doctors to our province.
We need to put programs in place to encourage health care professionals to want to practice here, all in an effort to improve healthcare accessibility for all residents of Newfoundland and Labrador.
It costs money, it takes time, but these are luxuries cancer patients do not have.
This needs to begin now – let’s allow our cancer patients to focus their energy on health, family, and survival, not travel, expenses, and options. Some say stress in the number 1 cause of illness – I wish for patients and families to have their stress reduced, and we have the power to do it. I just wish I knew how. But despite all this, the first focus should ALWAYS be on prevention and early detection/screening.Β
9. Is there anything else you would like to mention prior to ending our conversation today?
I would like to take this opportunity to thank you for providing a means to express my thoughts and opinions, share our story, and hopefully contribute in improving access and quality of care to the residents of Newfoundland and Labrador.
Acknowledgements
I would like to thank my wife and daughters for their input, suggestions, and editing my narrative. Dad would be so proud!
Disclaimer: Guest blogs are the purposes of education and/or sharing perspectives. The information shared by bloggers should not be interpreted as medical advice. All health information should be discussed with your health care provider. The website owners are not responsible for the contents of the guest blog posts.
This guest blog is a part of a public β scientist collaborative project led by the Public Interest Group on Cancer Research in Newfoundland and Labrador, Canada. For further information, please see here: mun.yaffle.ca/projects/15039.