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 Geoff’s 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 – 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 Jenna’s blog, I felt an extraordinary pride for this young person and their resilience and advocacy. It must have been hard to go through her mom’s 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 Deanna’s 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 Deanna’s talk (as per her preference) and then turned the transcript into her blog. Remembering Deanna’s 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.
Darrell’s 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 Darrell’s dad – know that you have a wonderful family who continues to advocate on behalf of the folks affected by cancer.
And with Namiko’s 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 – from shocked new patient to someone recovered, stronger, and doing advocacy – 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 “new normal” 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 someone’s.
Together let’s 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 – 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 – “There is a future where we do not have to worry about cancer”: 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 – 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.
Please see Part – I of this guest blog by Darrell Peddle here:
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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, everyone’s 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 cancer’s 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.
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 – 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.
On behalf of the Public Interest Group on Cancer Research, welcome to Episode 2 of our podcast series!
We have a very special guest today, James Moriarty! 😊
In this episode, James provides his experience and thoughts about cancer, cancer screening, and cancer care experiences as a transgender man in Newfoundland and Labrador.
All very important topics, considering that we have around 60,000 transgender men and women in Canada, and they too can develop cancer.
Being a transgender person, having a gendered cancer, jumping over the many cracks, advocating for better conditions, and educating everyone – literally – about what needs to improve in healthcare and community is not an easy job.
We – Janine, Jason, and Sevtap – thank James for educating all of us by sharing his story, knowledge, and insight. We will do our part and educate ourselves further. We all should do. Please join us.
BACKGROUND: A few things we – The Public Interest Group on Cancer Research – wanna achieve with this podcast series are to:
remove stigma around cancer
make it a conversation topic
learn from each other
so that we can help reduce our risk of getting cancer and support ourselves and others going through cancer better.
Please join us in this goal.
You can find more info about this project here or can contact me (savas{at}mun.ca).
Funding by the Office of Public Engagement – Memorial University and support by NLSUPPORT are gratefully acknowledged.
My name is Darrell Peddle, and I was born and raised in Shearstown NL, presently living in Bay Roberts with my wife Karen of 28 years. We have 2 daughters, who are both actively studying at MUN. I am a registered Professional Engineer, and have worked most of my career in natural resources development.
Family is my top priority, and I am quite proud of how close my family is, both on my side and Karen’s. When my dad, Donald Peddle Sr., was diagnosed with colorectal cancer in 2018, it was our close family that triggered my involvement with his treatment, his journey, his fight, and ultimately his passing in July of 2022.
His journey continues as my family navigates life with out him, and also through my involvement with Public Interest Group on Cancer Research.
My ultimate goal now is for my dad’s journey to help others.
2. What are your motivations in doing this guest blog today? How are you connected to cancer?
My motivation in contributing today is to continue my family’s cancer journey which began in 2018, fighting along side my dad and my family. I have since become an advocate for anyone else that may benefit from our journey.
My connection to cancer arrived August 2018 when my dad was diagnosed, and like many in my family, shocked us all.
Cancer was not part of our lives. I believed that it could never impact us. This is clearly the first and most important lesson I have personally learned, and others should learn as well.
If I were to make only one statement today, it would be for every person to join in on cancer awareness, as it impacts us all. We all need to be aware, and learn from others experiences, as it could have a lasting impact on how we all deal with cancer, and the steps we take in treatment.
So, how am I connected to cancer? I’d have to say through a variety of sources;
1.) Lived experiences clearly is the primary connection to cancer, since without my father’s diagnosis and journey, cancer would have remained a disease that only others had to live with. My dad was my superhero, and I want for him to be that for others.
2.) Although I am not working in healthcare, I am connected through my involvement in obtaining care outside what was seemingly available by way of traditional means. This includes integrative oncology /complementary care which complimented his traditional treatment, and immunotherapy which was obtained in the US.
3.) I am connected to cancer via research, as my dad was accepted in a clinical trial in the US, which did have favorable results, and also led to him receiving immunotherapy otherwise not available to him in NL.
4.) All events leading up to today has resulted in my advocacy in cancer awareness, treatments, and research. All I want now is for my dad’s journey to have a positive impact on families who continue to fight.
No one wants to be involved with this disease, least of all me. But as stated, this is a lesson we all need to learn. We are all affected by cancer, and we all need to work together to fight this disease.
I am so grateful to be given this opportunity to reach others and to share my story. I am committed to continuing my advocacy, and to speak about cancer, in hopes that we can enhance treatment options, promote a culture of cancer prevention, improve screening, and work towards ensuring early detection for everyone.
I believe that my dad’s fight already has had a positive impact, and that is with me – Since his diagnosis, I myself have been screened via colonoscopy procedures, where there has been indication of polyp growth followed by extraction. He may have already saved my life with early detection!
3. In your opinion, what cancer-related issue is most likely to be problematic in the years ahead in NL?
Accessible healthcare seems to be an increasing issue in NL, and will likely be problematic in years to come.
The reason for this in my opinion is early detection, which is critical in improve outcomes. In the absence of accessible healthcare, minor symptoms can go undiagnosed, leading to a situation where cancer can progress beyond a stage where it is treatable.
I believe this was the case with my dad, although he did have access to healthcare, but his symptoms were not properly investigated thus leading to his cancer progressing, and sadly resulting in his passing in July 2022.
So, not only the access to healthcare, but access to the right care!
This brings me to a tangent issue in NL healthcare, and that is how traditional treatment meshes with complementary care options. I have learned that in other parts of the country, and other parts of the world, it is recognized that integrative care and immunotherapies can work in harmony with traditional medicine in an effort achieve the best possible outcome for patients.
We do not have a cure, but we should use all available options, even if it’s to maintain an acceptable level of health and well-being while receiving invasive cancer treatment. This also branches off to the potential for financial struggles where additional treatment options come at a high cost. My dad was receiving treatment in Billings Montana, US, which was fortunately without cost under the clinical trial that he was a participant in. That said though, dad’s diagnosis and treatment resulted in mom leaving her job earlier than expected, and without any planning.
Information is so critical. We need to arm everyone with as much information as possible to provide the best chance for survival and success.
4. What do you think that can improve patient, family, and community experience with cancer in NL?
I strongly believe that the H. Bliss Murphy Cancer Center provides fantastic support to cancer patients and their families. The level of care and compassion in my opinion, would be very difficult, and likely impossible to improve upon.
I would like to take this opportunity to thank the oncologists and supporting doctors, nurses, and staff, for the care and love they all showed my dad and mom during our cancer journey.
The way in which we can improve the experience for patients, families, and communities who live with cancer, or who is attempting to adjust after cancer, would be access to information.
I believe that it’s not a question of whether residents on NL would be granted access, more so the level of public awareness and promotion of what’s available and the ease of access.
Making calls, visiting hospitals, waiting for seemingly endless time to see doctors, is simply not good enough. The process needs to be easy, accessible, and abundant. This is where I would have to step aside and allow those better suited to devise programs that would address these issues, since my opinion as a 52-year-old engineer, versus that of my 78-year-old mother living alone, or my daughters who are in their 20’s, all would have a difference of opinion.
Whether it’s an app complete with information, a phone number that somehow don’t have you on hold forever (and you get to speak directly with a healthcare professional), or a monthly newsletter in everyone’s mailbox, information needs to accessible to all.
For my mom, who would prefer something in her mailbox, has the luxury of having a lot of family that can access all types of information, and knows where to look for it. My fear is for those who truly are alone.
Those left alone after the passing of a spouse, or still battling cancer with limited family support. These are the people we need to focus on, and assume that everyone has the same limitations.
It would be easy for me to assume that a loved one can download an app, gather information off a website, or call a fellow colleague in healthcare, but I have learned that the opposite is true.
Most struggle, so we need to find a way to help those who get hit with this illness, can feel that they are not alone. That they have access to information quickly, and know who to call if more is needed.
This to me is what we need to improve upon, and will have a cascading effect of everything we need to do as a province to help our residents deal with this disease.
Acknowledgements
I would like to thank my wife and daughters for their input, suggestions, and editing my narrative. Dad would be so proud!
PART II will follow soon – stay tuned!
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 – 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.
