At the beginning of my final year of high school, I started getting frequent colds accompanied by two swollen lymph nodes at each collarbone. I didn't even know what lymph nodes were back then and only found out when I asked a friend what my lumps could be.
The first time I sought medical attention was by calling 1177 in January and describing my symptoms, which at the time were headache and muscle aches, fever chills, and the swollen lymph nodes. My symptoms were not considered urgent, and I was advised to drink plenty of fluids. In February, I went to the health center's drop-in clinic because of a cough and pain on the left side of my chest. The persistent cough was both an irritative cough and a productive cough. When it was at its worst, it tasted like blood in my mouth and made me gag.
Later, this pain on the left side of my chest started to feel like a swelling. My high CRP (blood infection marker), together with my other symptoms (which were not cold symptoms except for the cough), made the doctor suspicious that I might have lymphoma. I didn't know what lymphoma was back then either and only read about it in my medical records, so I looked it up. “Lymphoma.”
I had never experienced such a strong feeling of fear before
I had never experienced such a strong feeling of fear before because, like many others, I quickly associate the word cancer with death. It is such a loaded word.
After this, there were many visits to the health center to be tested for things like glandular fever and thyroid inflammation, which I did not have. My parents came with me to every medical appointment from then on because we were so worried. Another doctor thought I had acute bronchitis, prescribed antibiotics and cough medicine, which was a reassuring report for all of us. The symptoms became milder during the ten days I took the antibiotics, but then they came back.
In March, we returned to the health center because the pain on the left side of my chest had worsened; it felt like someone was stabbing me with a knife every time I breathed.
I was advised to try a course of Ipren and was sent home because my CRP had gone down, but not completely. At the next health center visit, my CRP had gone up again, so the doctor wrote a referral for a chest X-ray. After the X-ray that same day, I was called by another doctor from the health center who said that they could see an enlarged lymph node between my lungs on the X-ray images and that they recommended urgent further investigation. When I read my medical records, I saw that the referral I had received was called SVF, so I looked it up. “Well-founded suspicion of cancer.” I think I take back what I wrote earlier; this was probably the strongest feeling of fear I have ever felt.
Four days later, the investigation began with blood tests, a doctor's appointment, a PET/CT scan, and surgery on a lymph node, as well as a consultation about freezing eggs—all in about a week at Sahlgrenska University Hospital. A week after the surgery, on the same day we moved, I received the diagnosis of Hodgkin lymphoma. This period was the worst of my entire life; the uncertainty during the investigation and while waiting for answers was brutal.
Once I had received the diagnosis, I had a port surgically implanted to receive the treatment through and could start the egg freezing process. It consisted of examinations, injections, and finally the harvesting, which was the worst pain I have experienced so far. After that, the first treatment could begin, the same week I actually would have gone to Prague with my friends.
My treatment consisted of hospital visits from Monday to Thursday every three weeks, where I received chemotherapy, and the two weeks after treatment consisted of hospital visits three days a week to have blood tests, as well as a final doctor's appointment before the upcoming treatment. I also received medications and injections from the hospital that I was to take myself at home to prevent certain side effects.
Two weeks later, I shaved off my hair and started wearing my wig. I had several people around me who shaved off their hair almost at the same time as me to show their support.
The hardest part was when I found out I would lose my hair
The hardest part was when I found out I would lose my hair and when I started losing it. The time in between and after I didn't experience as difficult. It is only now, after my treatments, that it is starting to feel difficult again. I lost most of my eyebrows and eyelashes despite a little remaining, but that has almost felt harder than losing the hair on my head.
Four days after the second treatment, I had prom, something I almost missed because of the side effects. I had collapsed in the shower the evening before and didn't feel completely recovered after that, but fortunately, I turned the corner just a few hours before the prom.
The week after that, I had another X-ray to determine how many more treatments I would need, and the week after that, I turned 19. Four days after the third treatment, I had my graduation party; I didn't think I would have fun because of my situation, but it was the best day of my life. I am glad I went and could have fun despite not feeling comfortable or completely well.
At the doctor's appointment before the fourth treatment, I found out that it would be my last treatment because the blood tests and X-ray looked good. Some people need 6 treatments and some also need radiation, so I was happy that my treatment was as short as it could be and that I could have a little “summer break” after all. I managed to celebrate Midsummer the day after the fourth treatment was over, but then I got an infection and had to go to the emergency room because you need to do that if you get a fever during chemotherapy.
When I got well, Mölndal Posten contacted me and wanted to interview me, which I agreed to. It was nerve-wracking, but I am proud that I dared to do it. Now I am trying to enjoy the summer and plan to get my driver's license in the fall and then study to become a psychologist.
I have a final X-ray in August, and if everything looks good, my port will be surgically removed. After that, I will go for check-ups for two years. Although this period was tough both physically and mentally, I could somehow breathe a sigh of relief because there was a clear plan to follow, compared to during the investigation period. The brain is also primed to just survive so that you can get through the treatment, so many thoughts and feelings have come only now, after the treatments.
My body has gone through so much during this time
My body has gone through so much during this time, so I try to be kind to it, but I won't lie about not seeing it differently now. It is not easy to lose your hair and get scars on your body against your will as a teenage girl. The side effects have not been easy either because they have been unpredictable and varied between treatments. The brain may want to do something, but the body says no; then you simply have to listen to it even though it feels sad. Some things you could do yourself and other things the hospital could do to alleviate the side effects, but sometimes it didn't go all the way.
The most recurring side effects in my case were dizziness, blisters in the throat, stomach problems, body aches, and nausea, but these vary from person to person.
My hair has also started growing back slowly but surely
Today I feel great some days while other days can consist of fatigue, body aches, difficult thoughts and feelings, but that is completely okay. I am trying to get started with exercise because I haven't moved around as much as I usually do over the past few months. My hair has also started growing back slowly but surely.
I have missed the majority of the final time in high school, everything from school to graduation trips and parties, which feels difficult because I had other expectations for that time. I had plans that I had to cancel and change. I did my best despite the circumstances, which is the only thing you can do in such a situation. I am still grateful for what I actually was able to do, the days I could go to school, that I managed to go to prom and the graduation party because they were my goals, as well as that I received a full diploma.
I have also felt that I don't have the right to complain because my cancer has a short and effective treatment compared to some other types of cancer. That others have it worse than me. But what I have gone through is still something that no one should have to go through. Cancer is cancer and all feelings are okay to feel. My thoughts have been contradictory because sometimes I wonder why this happened to me and other times I wonder why others with longer or no treatments couldn't be in my place instead.
Cancer is cancer and all feelings are okay to feel
I am eternally grateful to my family, relatives, boyfriend, my friends, the school and hospital staff, and everyone else for the enormous support I have received all the way. Those who have accompanied me to and after the hospital. The understanding from the teachers and the help from the nurses. Also everyone I have gotten to know during this time, both at the hospital and remotely.
In the beginning, I was hesitant about joining Ung Cancer because I felt that I wanted to go through this as discreetly as possible and that no one except my closest should know what happened to me. I also didn't want to read or hear about anything to do with cancer because I was so afraid.
Fuck cancer!
On the other hand, I was inspired by others who were involved and shared in Ung Cancer to do it myself, because their openness helped me. I wanted to do the same thing to both help myself process everything that had happened, and others who are in a similar situation. Now I just get happy when others reach out to show their support, share similar experiences, or ask questions about mine, because I am very open about what I have gone through. I have learned a lot and gotten to know wonderful people since then. I think of all of you who have had or have any connection to this terrible disease. Affected as well as loved ones. Fuck cancer!
/Niyaz
