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Tag: Family

Guest Blog: My story of surviving stomach cancer in Turkiye – PART VI

Guest Blog 7 – PART VI

By Mehtap Savaş

January 2025

Ankara, Turkiye

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This guest blog consists of seven parts – hyperlinks will be added as they are published in order:

PART I – INTRODUCTION (please see here)

PART II – LIFE WITH CANCER AND TREATMENT (please see here)

PART III – LIFE WITHOUT A STOMACH (please see here)

PART IV – RETURN TO WORK AND IMPACT OF CANCER (please see here)

PART V – FOLLOW UP: GOOD DOCTORS, BAD DOCTORS (please see here)

PART VI – CURRENT STATE & FINAL WORDS

PART VII –  SILENCE OF THE MOTHERS (please see here)

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PART VI – CURRENT STATE & FINAL WORDS

MY DAILY LIFE AFTER TREATMENT

While life goes by, a significant part of my life is spent in hospitals. After my treatment ended, I went for check-ups every month for a year. Immediately after the check-up, I had to do the next check-up, make appointments, and donate blood for creatinine measurement before CT. The following years passed in the same way.

Meanwhile, other diseases entered my life. I last had a lung infection over a year ago. I had pneumonia 2 months ago. A pulmonologist also joined the doctors I go to regularly. I have had thyroid checks for 15 years. I also go to the psychiatrist. A few weeks ago, I had a problem in my right eye. I will go for check-ups for that from now on.

My sister jokes that “I get better healthcare than the Queen of England” 😊

From the first year onwards, among all the examinations, you always think about what will happen in the next examination. You feel more comfortable having annual check-ups. It is a constant reminder that not having a stomach requires careful eating and drinking.

My home in Ankara has become synonymous with hospitals for me. I adjust the medical appointment dates accordingly so that I can go to the summer house during summer months.

Low or high values in some of my blood tests affect my depression. I say “come one by one” but they don't listen to me :-) .

While I was preparing this article, my brother came from out of town to visit me. I had thyroid control and he supported me. I had a thyroid biopsy two days ago. The endocrinologist showed my nodules on ultrasound and said it looked like a potato field :-) Sweet potatoes? :-) Purple potatoes? :-) Yellow potatoes? :-) .

We started medication because my T4 level, one of my thyroid hormones, has been low for a long time. These low levels cause extreme fatigue and I feel dizzy when I stand up. My doctor asked for a check-up after 2 months. I have been on an iodine regime for 8 months. It was found to be extremely high in the tests. Still high :-( It causes low T4 hormone.

My life in Ankara is quite routine. I'm usually at home and spend time with my hobbies. I never watch television. I love listening to music. Sometimes I go on a song hunt  You also do things that make your life better.

I love being in the summer house because there is no hospital on the island except for the health center and one family doctor. I feel free because I don't have to go from hospital to hospital.

Another thing that makes me happiest at the summer house is taking care of and feeding stray animals. Last summer, I stayed on the island for the first time for nearly 5 months. I was doing pretty well. I have an interesting relationship with stray animals. When I come across a cat I haven't seen before while returning from somewhere, I say, "Come on, let me feed you." They walk beside me and come with me.

I don't swim much in the summer. In September and October, I walked by the sea a lot and collected stones and seashells. One day, 3 pitch black dogs and 1 brown dog in the distance on the empty beach started running towards me, barking. They didn't attack me, they just surrounded me, put their paws on my chest and asked me to pet them. One of them stuck his head inside my fleece coat. I loved them all, I talked to them. Another day a dog hugged my legs. 15 min. He didn't leave me 😊 I love them so much.

I have walked away from most of the toxic people in my life. This can be perceived as relative loneliness. But it is not. Being alone is not a problem for me, except for the absence of my mother. I would rather be alone than exposed to toxic people. I never get bored, I have so much to do. In the summer, I make home vinegar from my fruits. I don't use it, but my brother likes it very much. I give away some of it. Last summer I tidied up the front yard of the house. It took me a lot of time due to my fatigue, but I was happy while doing it.

One of my dearest friends told me that I was a geek. I like and enjoy doing research on a subject that I am interested in and curious about. I am not antisocial, on the contrary, I can communicate with people very quickly. Mine is a conscious loneliness. Because I'm tired of people's selfishness, their efforts to present themselves as something they are not and cannot be, and their desire to dominate me. My independence is very important to me and I do not like and do not want people in my life, who try to interfere with my personal space.

After all, we are members of a society and we have to do many things even though we do not want to. The important thing is to minimize these as much as possible and focus on things that will make us happy. Sometimes doing nothing is also an option :-).

LAST WORDS

The first thing that keeps me alive is that my mother took very good care of me, her support and the support of my siblings, the second is having access to very good doctors, and the third is having high morale, according to my oncologist.

One of the reasons why I tell my story of signet ring cell type stomach cancer, which has a low survival rate, is that we always have a chance of recovery, no matter what type of cancer and at what stage it is.

I know there are some of you who are going through much harder things than me. We are not just statistical data. We may surprise some scientists by not being where these data indicate, and we may change the statistical data with the help of advancing medical science. We must believe in our own power.

In this struggle, patients should also demand social support assistance. They should be able to access advanced examinations and specialist doctors as soon as possible, regardless of the disease. The first priority of governments, including my own country, regarding health should be people's right to life and their fulfillment of these requirements.

Since cancer treatment is very long and financially challenging, patients in need should be supported by the governments. I guess I'm asking for too much 

Another important issue is, of course, social awareness. For this reason, I find my sister Sevtap's work in this direction very important. I really appreciate how passionately she works for the platforms she leads.

Thank you very much for listening to me in this long story. I am very happy to be among you who share your illness stories here. Stay healthy, happy and well.
Sevtap and I at the airport, when she came to visit us in Turkiye

NEXT: PART VII – Silence of the Mothers

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February 17, 2025February 24, 2025 by sevtapsavas Categories: BlogTags: Advocacy, Canada, cancer, Family, gastric cancer, Lived Cancer Experience, Lived Experience, Our stories, Public Engagement, Public Outreach, sisters, Stomach cancer, Turkiye 4 Comments

GUEST BLOG: “DAD WOULD BE SO PROUD!” – PART II

Guest Blog 5 – PART II

Darrell Peddle, P.Eng.

February, 2024

Newfoundland and Labrador

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.

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February 20, 2024February 20, 2024 by sevtapsavas Categories: Public Interest Group on Cancer ResearchTags: Canada, cancer, Cancer as a family affair, Family, Impact of cancer, Lived Experience, Newfoundland and Labrador, NL, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, St. John's 2 Comments

Guest Blog: “Dad would be so proud!” – PART I

Guest Blog 5 – PART I

Darrell Peddle, P.Eng.

February, 2024, Newfoundland and Labrador

For Part II please see here:

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1. Can you tell us about yourself?

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.

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February 8, 2024February 20, 2024 by sevtapsavas Categories: Blog, Public Interest Group on Cancer ResearchTags: Acces sto information, Access to healthcare, Appreciation for healthcare providers, Canada, cancer, early detection of cancer, Family, guest blog, Lived Experience, Memorial University of Newfoundland and Labrador, Newfoundland and Labrador, NL, Public Engagement, Public Interest Group on Cancer Research, Public Outreach, screening for cancer, St. John's 2 Comments
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