When you are told you have cancer then you probably don’t feel much like fighting. The initial shock and awe can incapacitate your whole being. Your senses simply shut down.
I was completely overwhelmed after I had been told I had incurable Stage IV head and neck cancer and probably had just two months to live. I couldn’t accept what was happening to me and felt numb to the core, desperately vulnerable and utterly pulverised.
I had already had a Stage IV head and neck cancer ten years before and I thought I was out of the woods. I’d been through hell then losing my tongue in a 15-hour operation followed by 35 rounds of radiotherapy and chemotherapy. They threw the kitchen sink at me and I survived but the collateral damage was life-changing: speaking, eating and swallowing were now major daily challenges and my jaw irreversibly damaged because of osteoradionecrosis.
But this time, I was told a different cancer had grown in my neck and it was incurable. Shock and awe quickly moved to shock and denial and then to shock and anger.
The first time I was told I had cancer I was the classic passive patient and just let the medical team get on with it. I turned up for appointments, I did as I was told and just towed the line. What else could I do?
Well, the second time around, I realised there was plenty I could have done differently. I could have asked more questions, I could have asked for a second or third opinion, I could have researched and been more pro-active. My experience up to this point was deferential, asymmetrical and unbalanced.
I’ve learned the hard way that as a cancer patient, you have to make a nuisance of yourself (in a good way that is!) to get heard and get noticed. On occasions, you have to be a persistent thorn in the side of a system that often doesn’t serve the best interests of patients. That might not come naturally to you but this is your life and if the system is letting you down in any way, you have every right to kick up a fuss. If your CT scan hasn’t been reported on for 3 months then you make what waves you can to get heard (and yes, this has happened to me!).
I’m not advocating painting placards and starting a riot on an oncology ward with fellow patients but I am championing being a self-advocate.
You have to be your own cancer champion and for that you have to be a polymath patient and be willing to go beyond the traditional patient expectations and the paternalistic model of the doctor-patient relationship.
You are not a passive recipient of healthcare, you are an active and equal partner in addressing your health and wellbeing. This means being active in the treatment of your illness and the recovery of your health. It’s about being a co-catalyst in your disease management.
Of course, you don’t have to fight your own corner because you may be fortunate enough to have others on your side willing to provide the back-up. Close family and friends are the natural foot soldiers here.
But not everyone has this option and even if you do, the pressure on your nearest and dearest can be heavy and exhausting. It is incredibly hard for them to shoulder the responsibility.
Other options are available such as a specialist cancer nurse and some patients even have a cancer doula to provide the sharp elbows when needed.
Clearly, you can’t go it alone all of the time, everyone needs a ‘wingman’ and everyone deserves a cancer champion but don’t be afraid to stand up for yourself and be your own support. A considerable chunk of the cancer experience is DIY.
Self-advocating as a cancer patient is the active process during which you recognise your worth and assume the responsibility of clearly communicating your needs, expectations and goals to others. How far you go is up to you and at the end of the day, it is a choice – you can be an advocate with an ‘uppercase A’ or a ‘lowercase a’ or let others do the advocating for you.
But don’t be afraid to ask ‘awkward’ questions. Your life is on the line, not the person sitting opposite you. Probe, discuss, negotiate and challenge. It is empowering and will feed your determination to live and help you take charge of your own health and wellbeing. We can make better decisions when we are well-informed.
Try not to be intimidated by the expertise of your doctors – they don’t know everything. They also hold speciality biases and epistemic injustice in oncology is not uncommon.
So, when it comes to a cancer consultation, find a new question that has never been asked before. Challenge the status quo and get everyone thinking outside the box. Your doctor’s recommendation might not be best for you.
Where you have surgery and who does it matters so ask whether you will be treated in a high volume hospital by a high volume surgeon. When it comes to treatment, ask what the current treatment guidelines recommend for patients with your stage of cancer and who checks.
This sounds confrontational and sometimes it is because it has to be to get heard but for the most part self-advocating is a way of promoting mutual participation and equal power. You can help to foster further discussions and new approaches by being a good nuisance!
To stay alive and thrive, you do what it takes so you become creative, you get busy and start to research, cover new ground and uncover new thinking. Through self-advocating, you speak up for yourself, your interests and anything else that is important to you and this can lead to patient-driven quality improvement different across systems.
Always remember that you are a champion and it your voice and experience matters. You can be a change agent not only for yourself but many other cancer patients. Time to pull the lever, know your worth and stand up for you because it is all part and parcel of good cancer citizenship.
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 (please see here)
PART VII – SILENCE OF THE MOTHERS
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PART VII: SILENCE OF THE MOTHERS
As I mentioned earlier, I am the older sister of Sevtap Savas and I wanted to write separately about my mom.
I shared my stomach cancer story with you.
Now I would like to introduce you to my mother, who has always been by my side and taken care of me throughout her life and throughout my treatment.
MY MOTHER AS A CAREGIVER
My mother’s name is Nimet. She was my Nimet Sultan.
My mom and Sevtap
Unfortunately, we lost my mother, with whom I lived together in the same household for 31 years, due to cancer in 2021. My mother was the most valuable person in my life. My mother was a lively woman who always supported her children, gave us morale, and generously offered her never-ending love. When I was diagnosed with cancer, she showed such a strong stance that it gave me strength, too. She never showed her pain or cried.
While my beloved mother’s life was going on normally, she suddenly found herself in hospitals in 2009. We were both caught off guard by this. During the majority of my difficult and very long treatment, which started with my surgery eight days after my diagnosis, she had to stand strong without a supporter and keep up with everything without the luxury of getting tired.
She accompanied me for 11 days during my surgery and for 14 days when we returned to the hospital due to anesthesia pneumonia that occurred two days after my discharge. Even though my brother was with us for most of this long period, my mom never had the opportunity to go home and get some rest. My mom could neither sleep nor eat properly for 25 days. Every morning at seven, doctors visited the rooms and at that time all the attendants were removed from the section where we were sleeping. These rounds were the only time my mother left me alone in the hospital.
I must admit that I was a difficult patient. My mother never whined or said she was tired, and she tried her best to feed me. I am used to be a picky eater.
Cancer treatment is a treatment that requires constant hospitalization. My first chemotherapy was a short procedure consisted of going to the hospital at appointment time for five days and given by injection into the vein on my hand. However, before this, I had to go to the hospital and give blood to determine whether my blood values were suitable for chemotherapy, have my chemotherapy drugs prescribed according to the results, and deliver the drugs to be prepared at the hospital pharmacy the day before.
My mother came to the hospital with me and was with me throughout all these procedures. I was taking care of the hospital paperwork. After the chemotherapy session, I had to get an injection in my abdomen for ten days to increase my blood values. For this, we were going to a private hospital close to my home. During the three weeks after the session, we did not go to the hospital for just a few days.
And at the same time, before the next chemotherapy session, I had to make a CT appointment for my monthly check-up, have my medication prescribed, and have other requested tests done. Before the CT scan, I had to drink 1.5 liters of medicated water within an hour. As I explained in my cancer story, drinking water was torture for me. My mother was making me drink by saying, “Come on, daughter, one more sip.” Then I had to show the test results to my oncologist.
Just thinking about going to and from this hospital non-stop gives me a headache. I can’t even imagine how tiring it was for my mother.
In this busy schedule, she had to do the grocery shopping, clean the house, prepare the meals I could eat, and welcome and host the visitors who came to the house. Many of my friends from out of town were coming to visit me.
My mother was giving hand sanitizer to visitors when they first entered the house. She wouldn’t let them sit close to me.
I used to be sensitive to scents. With chemotherapy, this increased to very high levels. When my mother prepared something for me to eat, I would reject it before even entering the living room, saying I could not eat it because I was nauseated. There were many times when she would prepare 3-4 types of food in a row and I would reject them. She then would tirelessly prepare another meal.
I lost 5 kilograms after my surgery and only 10 kilograms during my chemotherapy. This was the most important indicator of how well she took care of her daughter, who had no stomach, but could only eat a bite or two, and whose esophagus was irritated due to chemotherapy.
My mother was a very conscious and intelligent woman. She would never warm up the food I had eaten and bring it back to me because it might produce bacteria. She rather would cook again. She removed from my life everything that would not be good for me – food, drink, clothing, and everything else.
During my radiotherapy treatment, she used to come to the hospital with me five days a week, and on the fifth day, we used to go to Hacettepe Oncology Hospital together to renew the medicine in the chemotherapy pump attached to my port.
My mother used a cane to walk more easily, but she got tired after standing on feet for too long. Not once did she say “I’m tired.” When my sister Sevtap came to visit us in the middle of my radiotherapy, she had a chance to rest a little.
My new chemotherapy, which was changed after my radiotherapy and consisted of very heavy drugs, was very difficult. It took 5.5 hours to administer the medications. My mom would wait patiently next to me. Considering the time she dressed me for the chemotherapy session, the taxi ride to the hospital and back, it took seven hours.
This chemotherapy was so severe that I was writhing in pain. When I used the bathroom, my mom held me so I wouldn’t fall.
When I made the slightest noise at night, she would instantly wake up and come to me. One night I called my mother and said, “Don’t leave me.” My mother said, “I will never leave you, you are a part of my life,” and I fell asleep again.
My mother only showed her sadness when I shaved my head. This was her way of showing the pain she was experiencing.
I was taking my mother out to dinner during the three-week break after chemotherapy session so that she wouldn’t feel like she was imprisoned between home and hospital.
It was a great responsibility to care for a cancer patient and be there for me wherever she could. My mother had tremendous willpower. It was a handicap for my brother to live in another city. It wasn’t easy to face everything alone.
My mother had the biggest struggle during my diagnosis and treatment phase, which lasted nearly a year. My mother’s extraordinary care did not end with the end of treatment. Until her death, she continued to take the best care of me, as she did before my illness. My mother was someone who loved her children very much, was happy to be with us, and put her love into everything.
After my treatment was completed, she was with me during all my follow ups. If my friend, with whom I always went to my oncologist appointments, was not available, my mother would accompany me. My mother was always there for me when my friend moved to another city.
My oncologist loved teasing both me and my mom. My mother was around 1.50 cm tall. He used to joke with my mother that he would make her taller. One day, while I was waiting for my turn with my mother in the waiting room, my oncologist came out of his room and when he saw me, he said, “Ooooo, the patient who is most wondered about in and around Balkans and Europe and her mother have arrived.” Naturally, all the attention of the other waiting patients and their relatives was directed to me. In a sense, I was my doctor’s success story.
I loved buying gifts for my mother. She would be very happy to receive gifts. We would go to restaurants, bakeries, and shopping together. Sometimes I would make her upset. When I realized that she was upset with me, I would go and hug her, make jokes and make her laugh. We would travel together whenever we got the chance. In the years before and after my treatment, when I realized she didn’t want to cook, I would order her favorite meals.
These photos were taken when we went to another city for a friend’s wedding in 2015. I arranged a taxi and we stayed for 3 days, visiting almost every part of this city famous for its food and tasting its food.
After my treatment was over, I went on a vacation with my mother, my sister and my nephew and had a lot of fun. We had other holiday getaways. I’m so sorry I didn’t take her to more trips.
In cancer, the attention is generally on the patient. Little emphasis is placed on the person caring for the patient.
While we, the patients, experience the side effects of the treatment, the storms and pains that the caregiver goes through, the weight of having to stand strong and the responsibilities placed on him/her are a long process that is very difficult to bear. Can the caregiver’s lack of support, physical fatigue, and most importantly, the psychology that has taken a big blow while the patient is receiving treatment be ignored?
What was my place in this question I asked myself? What could I do? I can’t find my answer. ☹
One day, while having dinner with my mother, I was looking at something on my mobile phone. When there was silence, I looked at my mother, her head was leaning against the wall and she had fainted. I panicked so much that I started doing the Heimlich maneuver, completely unconsciously. I don’t remember how hard I tried. At the same time, I was shouting “mom, mom.” Then my mother coughed and coughed up bits of food stuck in her throat. My hands and feet were shaking with panic and fear.
How could I know that after about 3 years, I would experience the greatest pain and lose her.
When I retired 5.5 years ago, I made a promise to my mother. I told her that I had more time now, that we would have better days and that we would travel together and do the things we wanted. But I could not fulfill this promise.
MY MOTHER’S DEATH BECAUSE OF CANCER
I retired in the summer of 2019. My brother took us to the summer house in the middle of summer. My mother loved the bougainvillea flower very much. We bought a sapling and planted it together. The sapling, which was around 50 cm tall, has now grown up to the 2nd floor. I look carefully at this souvenir I inherited from my mother.
We would go out to the front of the house in the evenings. My mother would take a light walk and we would watch the sunset.
Then we received sad news. My mother’s brother was diagnosed with cancer. This was very sad for my mother. We called and asked for his treatment to be done in the city where I live. It was not possible for my uncle to receive good treatment in our hometown. Unfortunately, we lost my uncle within a year.
It was very hot in the summer house we went to with my mother in the middle of summer 2021. My mother had lost her appetite. Since I lost my appetite, I attributed this to the heat.
One day, we went to the market for shopping with my mother. I bought lots of my mother’s favorite foods. The driver of the taxi we always take said he was busy and would send us another taxi. After waiting for a long time, my mother said that since she could not stand for long, she would sit on the wall 3-4 meters behind us and wait.
While I was waiting for the taxi, I heard a sound. When I looked back, I saw that my mother had fallen. I can’t remember how I ran to her. I was screaming in panic. People came and tried to help. I remember saying call an ambulance.
My mother had a semi-loss of consciousness. Over time, she started making eye contact only with me. The tumor had metastasized to the part of his brain where her motor system is located. The neurosurgeon said that surgery could not be performed in that area. I thought there were other treatment methods. We were looking for solutions.
We lost my mother within 2 months. She spent the last month in intensive care. I always believed that she would get better. Meanwhile, Sevtap came to Turkiye. Doctors said my mom’s condition was not getting better. We had the opportunity to visit my mom as one person only and for 5 minutes only, three days a week. Doctors said she was unconscious, but I didn’t believe him. The last time I was near her, my mother shook my hand even though her eyes were closed.
When I visited her, I was telling my mother that she would get better, that we would go home again, that my brother and I were waiting for her outside because the doctors did not allow us to go inside, and that she should not worry. I was telling her that I loved her very much and kissing her hands.
My mother used to get anxious when I wasn’t around. When I left her after my visits in the hospital, I would cry in an empty place on the stairs because I would think that my mother would be afraid without me.
I had my first panic attack while waiting for Sevtap with my brother at the airport when she arrived from Canada. It was the pandemic period, and they were not letting in people waiting for passengers. My heart started to pound; I couldn’t breathe. I sat on the floor because I felt like I was going to faint. My brother was confused about what to do. One of the people waiting for passengers came to us. He said he was a doctor and examined me. He said, “You are fine, you can call me if you need.”
I wasn’t in a position to care about myself. Hopes for my mother were diminishing and the rebellion inside me was growing like a mountain. We felt very helpless. They said we were losing my mom.
My nephew came to see his grandmother. We went out to buy something. While I was going to the car with my sister and nephew, I sat down again when the same symptoms occurred. We went to the emergency room. I didn’t know it was a panic attack at the time.
And one morning my phone rang.
The light in my mother’s eyes was now extinguished.
We went to our hometown for her funeral. We were in deep silence and pain. The next day at the funeral, I was talking to my mother as I hugged her coffin and cried.
About ten days later, we returned to Ankara to send my sister Sevtap back to Canada. My brother said he couldn’t leave me here alone and took me back to our hometown.
How could I not understand that my mother had cancer when I was a cancer patient for years? I was thinking and couldn’t find any signs. What did I do wrong, what did I skip? I felt like I was going crazy.
While we took my mother for a health check every year, we did not go to crowded hospitals during the pandemic to avoid catching Covid. My mother had no obvious illness. Did I make a mistake?
I had cancer, we recently lost my uncle to cancer. Did my mother have to be too? I was asking why, why… Why my mother!
I had never rebelled in my own illness. For my mother, my rebellion was endless…
I would visit my mother’s grave a few days a week, talk to her and cry. At my brother’s house, I kept my screams inside and cried silently.
Then the panic attacks started again. We went to a psychiatrist. He made adjustments to my medications.
I stayed with my brother for about three months because he did not let me be alone. Meanwhile, the psychiatrist had stopped some of my medications. When I didn’t want to stay any longer, my brother took me home and right after my brother returned, I had another attack one after another. Because my home meant my mother.
I went to the psychiatrist and my attacks stopped with another medication he gave me. I still have attacks from time to time, but not as often as before.
Every night I was crying and apologizing, saying, “Mom, forgive me, I couldn’t keep you alive.” I was wondering why she had to go. My mother deserved good days to live. I was asking what my mother was doing in the grave. My mother would be afraid without me. I needed my mother back.
After she died, I could not look at where she lay down to watch television after finishing her house chores. I still can’t look at where she first fell in the summer house.
I used to watch Korean dramas to clear my mind. When I laughed at a funny scene, my mother would say “laugh, my daughter, laugh more.” She would love it if I laughed, as I had almost forgotten how to laugh due to my depression.
I neither listened to music nor watched TV series for a long time. With my sister’s encouragement, I started receiving therapy. I went to therapy except for the summers for nearly two years.
I started watching TV series again. When I start laughing at a funny scene, my laughter turns into crying because my mother’s words would come to my mind.
My psychiatrist asked me this question one day. “You had cancer and recovered. You lost your mother to cancer. What kind of feelings does this create in you?”
That was the crucial question. I felt guilty. I lived, but my mother did not have this chance. I felt like I had committed a crime against her by being alive. When I told my therapist about this, he said let’s focus on this, but I could not make any progress on this issue.
We three siblings could not get over the loss of our mother. This great pain we are experiencing is still a deep wound within us.
The above photo of my mother is one of my favorites. The sparkle in her eyes, the joy of life, the happiness…
Monica in her arms was 4 months old when she came to us from the street. My mother raised her. There was great love between them. Monica would sleep hugging my mother’s legs. My mother wouldn’t get up even though she had to, so that Monica wouldn’t wake up.
My mother was a very selfless, loving woman. Some mornings I woke up with joy because I think I will see my mother. I think that perhaps she already had her breakfast. But, no…. Big disappointment….
The external memory attached to my mobile phone broke down and nearly 30 GB of my photos were deleted. I even went to programmers who could recover deleted files, but I couldn’t get any results. Gone are photos from at least the last six or seven years, including videos of my mother. I am so very sorry.
TO MY MOTHER
My dear mother, I miss you so much. Rest in peace. Don’t worry about us. We are fine. Monica and Mia (my cat) are good too. Monica continues her mischief. We will come to visit you when Sevtap comes to Turkiye. You are our everything. We love you very much. You are in our minds and hearts every day. And you will always be there.
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 (please see here)
PART VII – SILENCE OF THE MOTHERS (please see here)
PART II – LIFE WITH CANCER AND TREATMENT
MY SURGERY PHASE
Eight days after the diagnosis, it was time for surgery.
In my surgery, which started in the morning, my entire stomach, my duodenum, a part of my liver (because the 8.5 cm signet ring cell type tumor in my stomach had invaded my liver), and my gallbladder was removed (because it was understood that I had a stone in my gallbladder, so they told us to take it while I was on the operation table). I also had 25 lymph nodes removed. It was a very long surgery. I was first taken to intensive care for a few hours, and then to my room in the evening. I remember wreaking havoc in the intensive care unit because I was in pain.
During this time, my family's wait must have felt like a century. I would like to thank all my friends who came from out of town and from within the city and supported my family for my surgery.
I spent the first night after my surgery very comfortably. It was like I was in a sheltered white tunnel. I had a pump for a morphine-based painkiller connected to my lower back with an epidural. I was told to press if I had pain.
POST-SURGERY COMPLICATIONS
Two days after my surgery, I started having trouble breathing. Chest X-ray film was taken. The pulmonologist said that there was fluid accumulation around my lungs and that he would remove this fluid without hurting me. A lot of bloody fluid was removed from my left side and I started breathing normally again.
Then my kidneys stopped working. I took only serum for 7 days after the surgery. Everywhere was full of cables, pipes, probes, etc. One of these probes was going down from my nose to my surgery site. The amount of serum I received was compared with the amount of fluid in the bladder. There was a difference between the amount of fluid entering and exiting my body.
I saw that doctors attach great importance to this. In fact, after the last medication they gave me, they did not leave my room and waited for the medication to take effect. The treatment worked and my kidneys returned to normal.
I was discharged on a Friday, 11 days after my surgery.
However, on Sunday night I woke up with a high fever and not being able to breathe. I was taken to the hospital again by ambulance. I had pneumonia linked to the anesthesia/surgery. It was a more challenging process than my surgery phase, and I stayed in the hospital for another 14 days. A chest X-ray was taken every morning around five o'clock.
Since I couldn't stand upright on my own, my brother came in with me and held me while the X-ray film was being taken.
OUR EFFORTS WHILE LOOKING FOR A DOCTOR
While I was struggling with pneumonia in the hospital, my sister continued her search for a medical oncologist and radiation oncologist. We decided on a medical oncology professor who specializes in digestive system cancers at Hacettepe University Oncology Hospital. However, we could not make an appointment. My sister made many attempts.
Since we still couldn't make an appointment when I was discharged, I went to a doctor called the "Teacher of Teachers" in order not to be left without an oncologist. However, my meeting with the doctor and his answers to my questions demoralized me and I did not want to go on this treatment journey with him.
The only good thing he said to me was that my body was very strong. And on the same day, miraculously, we received the news that an appointment was made for the afternoon.
(image created by AI)
MY DEAR ONCOLOGIST
We were so happy. Actually, I didn't know anything about this doctor’s approach to patients. While waiting for the examination, I got hungry. My brother bought cookies in a hurry. While waiting with my brother's wife, we started eating cookies. It would be more accurate to call mine a scratch.
At that moment someone passed by and told me to stop eating it. He said to my brother's wife, "You can continue eating." And this person turned out to be my oncologist. 😊
When it was my turn, I went in alone. Because if he said something negative, I didn't want my family to hear it.
He examined all my medical reports asking long questions. I was diagnosed with Stage 2 of Stage 3. But he said, "I'm putting another 30% into his glass and moving his diagnosis to the 1st stage of the 3rd stage." I asked how much was in my glass. He said there was 20% but I made it 50%.
That's when I felt like a bond had formed between me and my doctor. And now I have been a patient of my oncologist for 15.5 years. He is a successful scientist who has risen very quickly in his academic career. I love and trust my doctor very much. It was a great chance to be his patient.
First, he arranged for me to meet with a dietitian who works with cancer patients. I learned about dumping syndrome from this dietician. I'll try to explain this later.
Later, he asked me to take the pathology samples from the hospital where I had the surgery and bring to a professor in the Hacettepe Hospital pathology department for re-examination.
At this stage, I would like to talk a little about our healthcare system so that what I wrote about hospitals and doctors can be more understandable.
OUR HEALTH SYSTEM
I think that the family medicine system in some countries makes it difficult or even almost impossible for the patient to reach a specialist doctor, and causes serious loss of time to the patient on such a vital issue as human health.
There is a family medicine system in our country, but no matter what the disease is, we do not have to get approval or referral from the family doctor to go to specialist doctors.
In the current healthcare system in Turkiye, there are State Hospitals, Private Hospitals, and most importantly, University Hospitals affiliated with Medical Faculties. We have the opportunity to visit specialist doctors of our choice (except State Hospitals) whenever we want, whether they are Associate Professors or Full Professors, for a fee, depending on the doctor's patient density.
Apart from hospitals, there are also private practices belonging to doctors who work with or without an affiliation with a hospital. University Hospitals are always overcrowded as patients come from all over Turkiye.
Since I prioritized and chose a doctor for the first time for myself, these opportunities were very useful to me. I live in the capital Ankara and I was lucky because there are very good hospitals here.
The doctors I chose or referred to by my oncologist during my treatment process, including the doctor I went to for my thyroid nodule and the doctor who diagnosed me with cancer, were doctors who were trained at Hacettepe Faculty of Medicine, the number one medical school in Turkey, and had academic careers. The doctor who performed my surgery also graduated from the same Faculty of Medicine. This not only gave me confidence but also ensured that I did not waste time in my treatment.
In order to avoid any misunderstanding, I should also point out that there are many important and high-quality medical faculties in our country. It is up to the patient's choice which one to go for. You can also receive free treatment from specialist doctors in these hospitals. Chemotherapy and radiotherapy are free regardless of hospital. During my treatment, some fees were charged in private hospitals.
Another important issue is that you do not have to wait months for advanced examinations such as PET CT, MRI and CT scan. In University Hospitals, such examinations are performed at a smaller cost compared to private hospitals and imaging centers. If you are diagnosed with cancer, PET CT is free in all hospitals.
BEING BLAMED FOR HAVING CANCER
While I was waiting for the pathology results, people came to visit me. During one of these visits, a group of people not very close to me blamed me for having cancer. They acted like I deserved cancer. At first I was astonished, then I was very angry. I couldn't let my mother be upset any longer. I asked them to leave. They were very surprised by my attitude.
Why were they surprised? Were they expecting me to say “you are absolutely right”?
DOING RESEARCH ON THE INTERNET
Naturally, we want to know about our diseases.
I gave up when I saw a lot of information pollution on the internet. I started asking my sister what I was wondering about. An expert on the subject could give the most accurate answers. During my treatment, a CT scan noted bone thickening on the side of my left hip. When I looked on the internet it indicated bone cancer.
When I asked my oncologist, he said, "Tell me, on which side do you get the B12 injection?" I said from the left side. "That's why this thickening is happening," he said.
I never looked at the internet again.
MY FIRST CHEMOTHERAPY
After the pathology tests were obtained, my oncologist prepared the chemotherapy protocol. Before starting chemotherapy, we were given training on the issues we should pay attention to during treatment by competent nurses. The drugs given were more bearable with side effects than the heavy chemotherapy given after my radiotherapy (which I will describe later). It was a treatment in which no hair fell out, but that didn't matter to me anyway.
There were many side effects such as nausea (excessive retching since I couldn't vomit because I don't have a stomach), endless abdominal pain and diarrhea, weakness, headache and so on. The thing I had the most difficulty with was eating and drinking. Even if I forced myself to eat a bite, in addition to difficulty swallowing, this caused me to become bloated and I was in a very difficult situation to bear because I could not vomit.
THE FEELING OF ENTERING THE GRAVE
Meanwhile, I had a psychological problem. When I lay down, I felt like I was in the grave. It would be easier for me to deal with this if I just felt it. But, I was also experiencing things like severe depression, tightness and heaviness in my heart. For this reason, I spent the entire treatment period sitting, even though I was in no mood.
This situation still exists for me even after 15 years. I have been someone who has only been able to sleep with sleeping pills for more than ten years and I can never lie down except to sleep. When I lie down to sleep, it starts within a minute or two and all I can do is to wait and say it will pass. It goes away after a while. (I will explain my psychological treatment later).
I HAVE ANOTHER PHOBIA
One month after I started receiving chemotherapy, my first control CT scan was taken. This was the first examination result I received myself, prior to seeing doctors, other than the pathology reports I received (and talked about earlier). In the report, there was a mention of a 3.5 cm long mass in my liver.
After trying for three or four days, it was understood that that part of my liver was the surgery area. But unfortunately, this situation caused me to develop a phobia of receiving test results. For the next 15 years and still while receiving my test results, I am having a hard time even though I seem calm on the outside.
I planned to receive as many medical reports as possible without being alone. A very dear friend of mine came with me and supported me for years.
Medical examination results have been provided online for 3-4 years now. Now I look at the test results while video chatting with my sister, Sevtap. There are also times that I have to look at them on my own.
MY RADIOTHERAPY AND CHANGING CHEMOTHERAPY MEDICATIONS
Meanwhile, I had received the 3rd dose of chemotherapy. However, my oncologist said, "I can't risk you," and made changes to my chemotherapy drugs after radiotherapy. It consisted of the harshest drugs that could be given. Since the new medications affected my veins so much that there would be limited vascular access, a subcutaneous port (a type of catheter) was inserted into the area on my upper right chest.
At this stage, my radiotherapy started. Since the latest system radiotherapy machine was in a private hospital at that time, my treatment was performed there. My doctor who performed my surgery said that a radiation oncologist was very important. The beam program was conducted by Professor at Hacettepe Oncology Hospital, with whom we met before.
I received radiation for 23 days and also continued to receive light-dose chemotherapy with a pump attached to my port. Sevtap came to Turkiye towards the middle of my radiotherapy.
Even if my sister was far away, she always gave me the greatest support, along with my mother. I want to say once again that I am grateful to her. We spent the remainder of my radiotherapy and the three-week break at the end of the treatment together.
I even knitted a beret and scarf for her as seen in the photo below. 😊
I haven't had the opportunity to write so far, but interestingly, I was a very high-spirited and cheerful patient. The joy part couldn't continue due to my new chemotherapy, but it didn't dampen my spirits at all. I don't know if I could have endured that heavy chemotherapy if I had been depressed.
MY NEW CHEMOTHERAPY After my first session with new chemotherapy drugs, I did not see any side effects for 2 days. In the meantime, I shaved my head. But on the 3rd day, it hit me so hard that there is no way to describe it.
Can a person's breath hurt them? Is contact with another person painful enough to tear your flesh apart? Yes.. Imagine that I was taking 14 different medications against side effects. I cannot find words to describe the pain I was experiencing.
Death felt like salvation.
I also had to have an injection in my abdomen for ten days to raise my blood values. All roads ahead of me led to pain. Because of the extreme irritation of my esophagus, the things I ate and drank were literally tearing my esophagus.
As the chemotherapy sessions continued, skin discoloration began to occur, starting from the tips of my fingers and spreading to my entire hand, as well as on my face. It wasn't a big deal, but neuropathy had started in my hands and feet.
The numbness in my hands went away, but the numbness that started from my toes and continued to the top of my ankle did not go away. In fact, because of this numbness, it was 8 years after my treatment, I think I fell down at home and broke my ankle. 6-7 months ago, I fell headlong while getting out of a taxi. While everyone was trying to help, I was looking at the beauty of the sky :-)
MY RITUAL OF EATING (NOT EATING)
In the last days of the three-week break period given after each chemotherapy session, I dragged my feet and went to a restaurant close to my house and ordered food for myself. I would chew a piece of meat, but since I couldn't swallow it, I would put it on a napkin, pay the bill and go back home. This felt good because I could do something about normal life on my own.
MY STRUGGLE WITHDRAWING MONEY FROM MY BANK ACCOUNT
One day, I needed to withdraw money from my bank account.
The clerk at the counter looked at my photo on my ID card and said that I did not look like the person in the photo. I told him that I was being treated for cancer. I showed my professional ID too, but it didn't work. I showed the ID of my workplace, but it didn't work.
He stubbornly did not let me withdraw funds. I was very tired of both staying up and my efforts. As can be seen in my photo, this was way too much. I was only able to withdraw the money after talking to the bank manager.
PEOPLE'S ATTITUDE TOWARDS ME
After this bank incident, I would like to talk about some of the ways people behaved towards me.
Those who cannot look into my eyes because the name cancer is associated with death, those who do not know what to say... And even those who change their ways on the street...
Look, friends, look into our eyes. We don't hesitate to look into your eyes, so you don't hesitate either.
And please do not use the cliché that we too can die at any moment to supposedly console us. Sometimes it is best to remain silent rather than thoughtlessly comparing the abstract risk of death to people with a concrete disease.
Of course, the behavior towards me was not limited to these. I will explain it later when its time comes.
END OF MY TREATMENT
As my chemotherapy sessions increased in number, it became physically unbearable. Until that day, I had done whatever my oncologist had said. I had check-ups every month. Drinking the medicated water for the CT scan was almost torture. During my last CT scan, my stomach was in excruciating pain and it took a lot of effort to stand still during the scan.
When the test results came out, my oncologist said, "I will give you another dose of chemotherapy, then we will evaluate it according to the results." I said I don't think I can take it anymore.
I think I had already exceeded my physical limits and my doctor accepted it. It was like a miracle. My treatment journey, which lasted nearly a year after my diagnosis, had ended. I, who did not cry when I was diagnosed, cried with joy because my chemotherapy was over.
My mother and I showed joy when we left the hospital only. Because I had to think about the patients waiting for their turn for examination around my oncologist’s office. My joy could have been their sadness.
Years later, my oncologist told my brother, who brought a patient to him for treatment, that “we had put Mehtap through a lot”.
Treacherous cat 😊 Just kidding. Thank you very much for being my doctor...
COMMUNICATION WITH OTHER PATIENTS
I think this is very important. We see that we are not alone, and since we are all fighting cancer, we become more sensitive about understanding each other. We can also learn useful things by sharing our experiences.
Last year, while waiting my turn for a CT scan, I was chatting with a lady older than me who had stomach cancer and had just completed her treatment. She said she loved salmon but couldn't swallow it. I told her to chew for a long time and if she still couldn't swallow, she should take it out without swallowing. She liked this idea very much. I still do this even now.
Once, a person who had stomach cancer like me said that coffee was good for digestion. Coffee really feels good when I have bloating.
Generally, patients ask each other how long they have had cancer. In the middle of my treatment, I had a conversation with a patient who had a 4.5-year history of stomach cancer. At that time, this period seemed incredibly distant to me, but it also gave me morale.
However, I have a dilemma when answering people who ask how many years it has been for me,
When I say that I have been living for a long time, this can cause different reactions in patients. Some of them find morale and strength in this.
However, it can cause demoralization, especially in people who are in the treatment phase or have metastases. Of course, I can't read their thoughts, but I can see from their behavior that they are demoralized.
That's why I'm very, very careful about what I say to other patients.
SCIENTIFIC ADVANCES
I received conventional chemotherapy and radiotherapy treatment 15 years ago. Science is advancing so rapidly that there are now new treatment methods. For example, Cyberknife, the world's first and only robotic radiosurgery system.
There are also great developments in radiotherapy machines. While CT scans of the lower and upper abdomen and thorax used to take a long time, now they are completed in 5 minutes. Instead of closed MRI machines, which give patients a difficult time, there have been machines with open sides for a long time.
There are chemotherapies with fewer side effects that are given orally in the form of pills rather than intravenously. Of course, I don't know all of them, but I greatly appreciate all the scientists who work devotedly and I would like to thank them, especially my sister.
MY SISTER'S PLATFORMS
At this stage, I would like to say that the platforms about cancer, led by my sister, are very important.
It fulfills a very important mission for social awareness, together with patients and their families. While informing the society, she does something that has been rarely done before by involving cancer patients and their families in her work. While advocating for cancer patients, she makes them visible to society.
I am proud of her and I sincerely congratulate those who took part in these activities by her side.
This guest blog consists of seven parts – hyperlinks will be added as they are published in order:
PART I – INTRODUCTION
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 (please see here)
PART VII: SILENCE OF THE MOTHERS (please see here)
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PART I – INTRODUCTION
Hello, I am Mehtap Savaş, older sister of Professor Dr. Sevtap Savaş.
I greet you with love and want to share my stomach cancer story and experiences with you (I was diagnosed in 2009).
With this, I hope that people who have not encountered cancer can understand us, at least a little bit.
IS IT A HOSPITAL? MY GOD! NO!
First of all, I would like to tell you about my hospital phobia and how I came to the diagnosis stage despite this phobia. When I was 5-6 years old, I had a tonsillectomy performed under local anesthesia, which made me very afraid. When I was taken to the operating room for the operation as a small child, I struggled so much and caused difficulties for the doctors that my surgery could only be performed on the third attempt, at a different time. After this traumatic experience, I developed a hospital phobia and when I grew up, I almost never went to the hospital unless I had to.
MY DEAR SISTER'S ROLE IN CANCER DIAGNOSIS
I had nodules in my thyroid. My beloved nodules are a big family that has become more and more crowded over the years. My sister was insisting that I go to an endocrinologist for a very long time. Due to my hospital phobia, I was stubborn and did not go.
Finally, as a result of my sister's persistent efforts, I made an appointment.
When my doctor saw my tests indicating extreme anemia, he asked me directly: "Haven't you ever thought about which cancer I have?". I was 41 years old and even though I had stomach pains, I didn't even think about it. Thanks to the gastroenterologist who referred me to the doctor I went to for a completely different illness, it was understood that I had stomach cancer.
If I am alive today, I owe it to my sister, and on this occasion, I once again express my endless gratitude to her. If I had not gone to the doctor (endocrinologist) at her insistence and had not been directed to another doctor thanks to the endocrinologist's attention, I would have passed into a stage from which it is unlikely to return.
(My mischievous sister :-). I took the photo when I was discharged from my second surgery. The one in his hand is the name card that was put on my wrist in the hospital. :-) )
MY DIAGNOSIS PHASE
First, I had a colonoscopy with endoscopy at the university hospital and samples were taken from my stomach for pathological examination. Later, in our healthcare system, patients generally receive their examination results from the relevant unit and show them to their doctors, so I picked up the pathology result in the same way.
BRAIN ENCLOSURE
When I looked at the pathology report, I saw that the result was cancer.
First I took one step to the right, then one step to the left. Then I stopped where I was. I don't remember how long I stayed like that. At this stage I had a brain eclipse. I couldn't think of anything. Then suddenly I came to my senses and started thinking about what I should do. I am a lawyer and therefore I take immediate action and focus on results.
It occurred to me to look for the university room of the doctor whose private practice I went to. Luckily, he was in his room and it was confirmed through his words that I had stomach cancer. While he was trying to explain to me that I had a chance of recovery with treatments such as surgery and chemotherapy, I asked what I should do. He said “let's get an MRI first”.
I went outside and realized at that moment that I didn't want to be alone. I called my office-mate at work, whom I love very much, and told her about the situation and asked if she could come pick me up.
While I was waiting for my friend, I saw that I was standing under a mulberry (a type of fruit) tree and started eating mulberries from the branches I could reach.
I was diagnosed with cancer, which is associated with death, and I was eating mulberries, not knowing what would happen to me.
FIRST STEP TO TREATMENT
While I was thinking about what path I should follow, my friend came and, thanks to my friend, I took the first step I needed to take in my cancer treatment journey.
She said, "If you trust me, let's go to my brother." My friend's brother was a general surgeon who was the clinical chief at a State-owned Training, Research and Oncology Hospital, and he performed my mother's un-critical surgery about 2.5 months ago. He said yes, there was something, and further examinations began the next morning.
HOW WAS I GOING TO TELL MY FAMILY?
This was the issue that challenged me the most at that moment.
How should I say it? First, I called my brother, who lives in another city, and explained the situation to him. Then I went home.. The hardest thing was to tell my mother and I couldn't find the right words.
I finally told my mom that the results were back, and I was diagnosed with cancer.
When I think about my mother's reaction, she never cried, never showed her sadness. And she said to me, "My inner voice tells me that you will get better, don't worry, we will get through this too." My mother was a woman who was strong as a mountain and always supported her children. She always hid the pain inside her and never showed it to me.
The strength of will shown by a mother whose child was diagnosed with cancer was incredible.
Of course, I also had to tell my sister about this result. I sent her a message and wrote that the results were not very good. My sister remained silent for a while. Then when she called, she said she wanted to come, but I told her there was no need to come right away.
My MoM I will tell you about my dear mother, who passed away from cancer 3 years ago, and how she took care of me carefully in a separate article, as I do not want to squeeze in between the lines in this article.
We are excited to share with you our new scholarly (peer reviewed) article just published in Journal of Psychosocial Oncology Research and Practice!
In this manuscript, we worked on understanding public engagement needs and opportunities when it comes to cancer in Newfoundland and Labrador. We also developed recommendations for both our group and external stakeholders.
For example, we collated information about which topics on cancer are relevant, or an interest to public members. We developed plans to diversify our collaborations and improve the public outreach activities in the province. We followed some of these plans as well.
This project was co-led by a public member, John King and a scientist, Sevtap Savas.
We thank our Group members, public members who shared their thoughts with us, our funder (Office of Public Engagement) and supporters (NLSUPPORT) at Memorial University of Newfoundland.
On behalf of the Public Interest Group on Cancer Research, Sevtap Savas, St. John’s.
We were pleased to have two special podcast episodes in September and October with Tracy Slaney and Heather Mulligan.
Tracy Slaney is an amazing advocate and caregiver in Newfoundland and Labrador. Heather Mulligan is from Canadian Cancer Society Advocacy unit in Atlantic Canada.
We have had cozy and very informative chats about what it means to be an advocate, and how organizations like Canadian Cancer Society are helping with advocating/lobbying the governments for change. One recent example is extension of unpaid sick leave and job protection in Nova Scotia.
We hope to see similar changes in other Atlantic Canada provinces, including Newfoundland and Labrador.
You can find our special podcast episodes here:
Episode 15 (special episode) – A heartwarming story of cancer advocacy and caregiving by Tracy Slaney:
In this last episode of our Season I, we talked with Mike Kehoe, a community member and person with a lived experience of prostate cancer. Mike shared not only his experience with us, but also his positive and empowering messages.
We are grateful that he took his time to converse with us.
Take a look:
We hope to be back with Season II next year, pending funding. We really enjoyed this experience, having wonderful guests and co-hosts, and learning from each other. Hope you will find time to listen to our podcast and perhaps be a guest in one of them in the future.
