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4 December, 2018

Dealing with cancer in Sweden – Betül’s story

Betül is the most generous, positive and wonderful person that I have ever crossed paths with and I consider myself lucky for having met her. She is a proud scientist at Chalmers and she loves Sweden and her life in Gothenburg. She is also a Newbie like many of us. 

Imagine you just moved to a new country. That shouldn’t be difficult as most of you are – or have been – a Newbie. Remember how hard it is/was sometimes to be alone in a new city, new home, new job, maybe even a new language? It feels like being reborn, requires a lot of effort to just go through the most mundane daily routines. It takes a while to build up your comfort zones again. We have all been there, one way or another, and we know or have at least an idea of how it feels.

 Now imagine that right in the middle of the adaptation process you were diagnosed with cancer. In a foreign country. Far away from home. That is exactly what happened to Betül, and this is her story.

 

Betül during the "interview"

Betül during the interview

Moving to Sweden

Betül moved from Turkey to Gothenburg in February 2017, after having been accepted for a postdoctoral position at Chalmers. “I had no idea how beautiful and peaceful Sweden is, so I consider myself lucky for having ended up here,” said Betül during our nice talk over a cup of tea. A few months later she noticed something on her neck. At first, she didn’t pay too much attention to it, especially because she didn’t have any other symptoms, but when it started growing and became visible, she decided to check it up at the closest vårdcentral.

The diagnosis

The first thing she was asked was if she had other symptoms. When she replied no and saw the doctor’s reaction, she understood for the first time that it could be serious. She did a blood test immediately and was told the results would take 3 days. However, she got a phone call from the doctor the day after. The results had not been conclusive, and she was advised to go to the emergency room at Sahlgrenska. Immediately. She had a second biopsy and once again, the results would take some time: 10 to 15 days. That was a Thursday. The Monday after, Betül got call back again and she understood that it was bad.

She was told she had lymphoma and it was big. It was malignant and spreading on the upper body. It was scary.

“I was in shock and went back to work because I just couldn’t think about it. I needed some time to process what was happening to me.” Later, she talked to her colleagues and friends, and asked one of them, Elin, to be her contact person at the hospital. “It was better to have a contact person that could speak Swedish because even though most people at the hospital speaks English, some of the nurses could have difficulties in explaining some things.” However, when she had a small surgery, she was offered a Turkish translator, in case she didn’t feel comfortable enough speaking English. “I refused, but I thought it was nice that they offered. It made me feel safer.”

The treatment

One of the nodules was close to the heart, therefore Betül was not fit for radiotherapy. She was told she would have chemotherapy for 6 months. Her first chemo day was less than a month after the diagnosis. The hospital provided her with all the necessary information and support. “They told me to never google it and gave me a phone line that I could call at any time with questions or if I got any new symptom. They could also call my doctor if needed. Having that support made me feel comfortable and safe. I never felt like I was bothering them with my silly questions and worries. One does get a lot of thoughts and doubts about everything”.

The treatment was not easy. Each session took five hours, during which five liters of liquids (4L of chemicals + 1L salt water) were administrated on the arm. “That sounds awful, but at that time I was not feeling sick. I could read and do other things.” After a while, the doctors changed the method and used a vessel on her chest, which shortened each session to 3h. “The most difficult was the days after the chemo sessions, but with the medication, which took a few weeks to get right, I could usually work a couple of days later.”

Life and work during the treatment

The most striking memory I have of Betül during this whole period was how calm and positive she was. Constantly! At first, I thought it was a defense mechanism to avoid thinking about her treatments. Soon I realized that it was just who she was. Still, upon her diagnosis, a flow of questions hit Betül. Could she stay in Sweden for the treatment? Would she be able to keep her job? What would her boss say? Her contract had barely started and she could be gone for months.

“It was July and most people were on vacation or attending conferences. I emailed my two closest managers and immediately got a reply full of support. My boss even offered to interrupt his holiday and come here, but I said that was not necessary.”

The doctors advised her to not work during the treatment. According to her medical certificate, Betül was entitled to full sick leave. She had, however, a different opinion. “I really didn’t want to just be at home. I asked them to please, please, let me work. Three doctors discussed this and after a while, two of them approved as long as I took certain precautions.”

Betül ended up applying for flexible sick leave. This meant that she could determine how many hours a day she wanted to work. All she had to do was to count the working hours so that her salary and sick leave remuneration would be correctly adjusted. After the treatment, she went back to working full time and her contract was extended to compensate for the time she was on sick leave.

“Everything worked very smoothly and not only did I not lose my job, but I had the freedom of choosing when to work.”

Light at the end of the tunnel

After three months she did more tests, revealing that the treatment was working. However, she would have to do the three remaining months of chemotherapy. “After the second session, I could actually see that it was working, because the nodule in my neck was much smaller.”

At the end of the treatment, new tests revealed that the nodules had disappeared and Betül was cancer-free. She still does regular checks, but so far everything is alright. “The best thing is that I never have to take care of anything, the doctors or nurses always call me to tell me about my appointments. I never have to worry about anything. I don’t even have to think about it.”

Costs

Betül had medical insurance from Chalmers and ended up never paying much for the treatments. She paid for some medicines and hospital visits but quickly reached the 1100kr and 2000kr top margins. This meant she didn’t have to pay for anything else. “Chemotherapy is really expensive! I remember that three little pills that I had to take before sessions, cost about 3000 SEK. The hospital provided everything. I didn’t even have to go to the pharmacy myself, the nurses just took care of everything.”

Betül and Elin working

Betül and Elin working in their lab at Chalmers

Relationships in Sweden and back home

Betül ended up developing a close relationship with all the doctors and nurses from vårdcentral and at the hospital. “I know them all by name and I felt that they really took care of me, like family.”

When I asked her about her friends, here in Sweden, mentioning how some people have difficulties making Swedish friends. Her answer came fast, as she immediately said no, that it was not difficult at all. Everyone at work, Swedish or not, had always been helpful and supportive. “My closest friend, who also became my contact at the hospital, is Swedish and she did everything she could to make me feel good.” Betül had to change apartments during the treatment. The sessions were on Fridays and she was supposed to move and mount the new Ikea furniture during one of the weekends.

“I felt so much nausea after that session, that my friend Elin booked me a hotel so that I could stay in peace to recover from chemo. In the meantime, she and other friends from work moved my things to my new apartment, built the new furniture and took care of everything. I only had to move in and Elin and her boyfriend even drove me from the hotel to the apartment.”

When asked if it would have been easier to deal with cancer at home, Betül quickly said “No”. She added with confidence: “I’m quite sure that it was better to be treated here. The hospitals have better conditions, are cleaner and much more organized.” She talked a lot with her parents during the diagnosis and treatment, but she always told them to not come and visit her. “My parents are very emotional, and I always felt sad after talking to them. I felt weakened and it was the only time I felt really sick.” She continues by saying that otherwise, and despite nausea and side effects, she never really felt she was a sick person. “I had my friends from work and I felt supported by all nurses and doctors, so it was ok.”

A message from the heart

Betül would also like to leave a message for all of those going through something similar: “I would like to tell them that they don’t need to worry about their diseases and treatment. Sweden’s health care system is the best for taking care of the patients (especially in urgent cases). Swedish doctors have great knowledge and they are always up to date with new improvements in medical science. They recommend the treatments accordingly. Most side effects from chemotherapy are predictable. Doctors can help to minimize them with medication. The most important I would say is to keep the mood up. I found that very easy in Sweden with all the kind and helpful people around”.

Betül has also made herself available to be contacted. If you would like to know more about her experience or simply would like to talk to her, all you have to do is leave a comment below.

I have learned a lot myself while talking with Betül. The biggest lesson might have been that I won’t complain again when I have to wait for my turn at the vårdcentral. Now I know that they are probably taking care of a more important case.

Thank you Betül for sharing your story with us!

Remember that you can learn more about the Swedish health care system here.

 

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Sara Costa
Hej! I’m a Portuguese Newbie in Sweden. I have also lived in Brazil, Poland and the Czech Republic. It’s been fun to be a foreigner in so many different countries and I enjoy learning about other cultures. I’m a fan of sports, some to watch and some to practise, my favourite being running. I also love food, reading and blogging. I hope you enjoy my posts!

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