Please join us in this heart-warming chat with Lianne Mantla-Look about her journey of stomach cancer, resilience, self-advocacy and more.
Lianne is an amazing advocate with lived experience. We are so excited that she joined us for this podcast.
Take a look.
In this episode, Sevtap talked with Dr. Peter Barnes about grief, bereavement, and healing at the face if loss.
Take a look.
image by Kayla Crichton
Atlantic Cancer Consortium Patient Advisory Committee (ACC PAC) is excited to announce the date for their public, virtual conference titled “Cancer is Personal”: Humanizing Precision Medicine in Atlantic Canada!!
Please save the date, March 15 2025!
Further information, including registration, speakers, and schedule will be announced in early 2025.
Please join us in this public conference designed for Atlantic Canadians by Atlantic Canadians.
Our special guests today is Geoff Eaton, the Director of Young Adult Cancer Canada (YACC).
In this episode:
Take a look and hope you will enjoy this episode as much as Geoff and Sevtap have.
I write this blog post as a part of our latest project where we (The Public Interest Group on Cancer Research) aim to create digital resources and stories about cancer in the form of blogs, video recordings, and podcasts.
Today, I focus on the guest blogs.
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 two blogs 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.
With much love,
Sevtap Savas, March 29, 2024. St. John’s
Guest Blog Post – 6
By Namiko Sakamoto
March 2024
Newfoundland and Labrador
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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.
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Guest Blog Post – 4
By Deanna Roy
January 2024, Newfoundland and Labrador
My name is Deanna Roy, I was diagnosed June 1st, 2018 with stage 4 HR2 positive metastatic breast cancer at the age of 42.
From St, John’s Newfoundland and my cancer journey is not a typical cancer journey in the way that I found out I had cancer.
Me and my best friend were out shopping. I left a local store to step down. From the sidewalk, I thought I tripped.
But later I found out my leg gave out, I could not get up so we had to call an ambulance. They brought me to the hospital, which was the Health Sciences, ‘cause that was the closest when I was there.
I went in Emerge. They gave me X-Ray, and then they said they were going to put me in surgery right away.
But it didn’t happen because something else showed up on the X-Ray, and then I had to go under another lot of tests. I was asked strange questions.
And later on that evening, in Emerge, I found out that I had breast cancer and that’s why when I stepped down, my knee and some of my tibia and other parts of my leg just, I guess, disintegrated.
Of course, they admitted me into the hospital. I had to have surgery, but I had to wait a week because they had to figure out how do they were going to do surgery.
And then, I found out that I had to have radiation and chemo.
It started. I only had to have 10 rounds of radiation so they started that while I was still in the hospital. I was in the hospital for 3 weeks. They had to reconstruct my leg.
And then after I left in the end of July, I started my cancer treatment, which was chemo.
I had to have so many rounds and that brought me until December of that same year, which I had to go every 3 weeks to get, and then after I was finished my chemo, I still had to get some treatments that was both to keep occurring for the rest of my life and plus I had to have a bone treatment as well to strengthen my bones.
But along this journey, I had many ups and downs.
And then, a year and a half ago I ended up with an infection in my leg.
They had it under control and then I shaved my leg and caused the hole and that caused the infection to start leaking.
And I had to go in and have 4 more surgeries on my leg and I was on very strong antibiotics.
And that would interfere with my treatment. So, I had to stop my treatments for total of 10 months.
Through the stoppage, and that, and after everything was clears and I could go back and see my oncologist, they did a CAT scan that showed that I had no cancer growth whatsoever. It was all clear, which you could not, because at the stage 4, it’s very hard to keep it under control.
But with all the treatment and stuff, now I don’t have to have any more treatment because the cancer is not growing. Every 3 months, I’ll just have a CAT scan and they’ll keep an eye on it until I need to start having some more treatment but hopefully it doesn’t come back.
I want to say this when you hear stage 4, you think it’s a death sentence. But it doesn’t have to be a death sentence. Go on and live your life the best way you can and keep a positive attitude. And, anything is possible you can beat anything and with my diagnosis, my average life span, which none of the doctors ever told me, was only as 3 years life expectancy. I’m almost going on my 6th year. So anything is possible.
I know it is hard but if there are people out there that can help you through it. You can go and you have family members.
You could talk to people and just share your story.
And another thing is all the professionals told me “Don’t go and research stuff online”, because it’s all negative and I took their voice. I never looked online to read anything.
I only started doing that probably around 4 years after, a couple of years ago, I just started looking up all the information because sometimes, there’s a lot of false information out and you don’t need that looking at all the bad stuff that could happen. All you need is positivity and a good feel and you can get through anything. You can talk to social workers you can talk to a therapist, if you need to.
I had good support and it made my journey a lot easier.
You will have bad days, but on your bad days, you’ll just rest and on your good days, go.
And it is, for me, it was a big life change. I never thought of it.
And also, my husband had to stop his job because he had to take care of me and it was a big financial burden, but through other programs and stuff as people there to help. I got long term disability and stuff with the company I used to work with. So, I’m more fortunate than other people that is going through the same thing. And they can’t afford to stop working. But sometimes you have to just to eliminate some distress and all that.
Sometimes you just, I don’t know, just live one day at a time.
Some people get in a rabbit hole that they can’t get out of but there is a rabbit hole that you can get out of and I just want you to know that.
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.
The Canadian Cancer Statistics 2023 report is publicly available! You can access it here.
This annual report is important for seeing the cancer reality in Canada.
As a Canadian resident, cancer scientist and cancer advocate, this report is an interest and an excellent reference for knowledge for me.
Some data presented in this report that may be an interest to you:
Until then, folks, please try to reduce your cancer risk as much as possible; educate and advocate for yourself, your health, knowledge, and healthcare; take advantage of cancer screening programs and support programs.
Wish you all healthy and joyful days ahead!
Sevtap Savas. PhD. St. John’s, NL, November 9 2023
