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This type of cancer does not make itself felt for a long time, and even if it causes certain symptoms, their significance is sometimes minimized. Fatigue, sleep problems – who would go to an oncologist because of them? This is why glioblastoma is deadly: it is diagnosed too late.
A few days after my 35th birthday, I passed out and fell. One moment I was standing by the kettle in the kitchen waiting for water, and the next I was lying on the floor. I couldn’t remember anything, but the two dark circles under my eyes told me something bad had happened.
Nevertheless, I quietly finished my tea and took the bus to the hospital. After several hours of waiting for the results of the computed tomography, I learned that in my brain, somewhere on the border of the temporal and parietal lobes, there is a large mass. Detailed examination confirmed the worst: it was a glioblastoma.
Behind this inconspicuous name are tumors that originate from the brain’s helper cells. As with all brain tumors, it is not known what causes them, and due to inadequately kept statistics in the UK, no one can say how many new cases of the disease there are in the UK.
Looking back, I notice all the symptoms: I still felt tired, had trouble sleeping. But at the same time, I was in great shape. I have never spent a night in the hospital. I even quit drinking. It didn’t matter. According to my neurooncologist, glioblastoma has probably been in my head for over ten years. It grew slowly until it reached a size that made it unconscious.
From the moment I fainted until I was diagnosed with glioblastoma, I lived as if nothing had happened. The only novelty was visits to specialists in fields that I had never known existed before. The neurophthalmologist confirmed that the tumor was close to the optic nerves. The neuropsychologist concluded that the cancer does not seriously affect the basic functions of the brain.
I worked for nearly two months, although the drugs that were supposed to protect me from another attack made me sleepy and distracted from what was happening around me. I’ve had headaches. It was getting harder and harder for me to focus on anything other than the fact that there was something in my head that could turn out to be a malignant tumor.
Finally the day came to see Andrew McEvoy, a neurosurgeon, who showed me the results of a detailed study. There was a thick white mass about the size of a lemon in the center of my head. I started to feel terrified.
I became a glioblastoma specialist overnight. I scoured the internet for information on the latest discoveries in the diagnosis and treatment of brain tumors. I learned that there are two types of patients: those who will die, that is, the majority, and those who will survive. In addition, brain tumors are slightly more common in men than in women, and the likelihood of developing the disease increases with age. A brain tumor is very difficult to detect without a biopsy or a CT scan. The average family doctor will diagnose one brain tumor during the entire career, which is why this type of tumor is considered rare.
Unlike most cancers, the survival rate for brain tumors has not increased significantly in the past 25 years. Even benign tumors can be fatal. Brain cancer reduces life expectancy by an average of around 20 years, which is much more than most other cancers. These types of tumors kill more people in their forties than any other, and there aren’t many breakthrough drugs on the horizon, says Peter Dickens of Brain Tumour UK.
At this stage, I was already convinced that I could feel my glioma growing in my brain. I was warned that surgical removal of the tumor poses a risk of eye damage. Nevertheless, I decided to have surgery.
To my amazement, it turned out that the brain is not a solid lump, and that it moves during the procedure. That is why Dr. McEvoy performs many operations using only local anesthesia to avoid damage to the brain’s functions. I saw a video of McEvoy talking to a patient while performing an operation on her brain. I felt terrified again.
My operation lasted 12 hours. It made me feel the same as before. The only trace of surgical interference I saw a little later, when the gauze turban and bandages were removed from my head. In addition to the avant-garde haircut (half head bald), I had a crown of small round scars where the clasps were placed to hold my skull in place during the operation. On the bald side of the head, I saw a large, precise C-shaped scar that ran from the temples to the back of the head. The part of the skull that had been removed for surgery was floating loosely in some fluid now.
However, as it turned out, the worst was yet to come. Even though I could count on help from family and friends, I felt hopelessly isolated. I started to get depressed. I had a terrible dislike of myself. When I fell asleep at night, I had terrible dreams about medical experiments. I still felt dirty. My head was so swollen that I didn’t recognize myself in the mirror. For several months, I could barely see and could not stand.
My plans for 2012 have gone wild. I was going to get married and go on a honeymoon. For a year, I have been conducting research in connection with the exhibition that I was curating. I was preparing for the tour promoting my book. Now the realization that the whole year would be subordinate to disease was even more frustrating. The medications I was taking were driving me into a state of relaxation and isolation. Three months passed in a hazy, surreal atmosphere of sleep.
Today, almost five months after surgery, the removed skull fragment has almost returned to its place. It turned out that the tumor was not malignant. I’m going back to work. I no longer have headaches and dizziness, although the right side of my head and face is still numb and I hear less in one ear. Routine examinations have shown that my eyesight has improved, although I do not recommend tumor surgery to anyone as a cure for myopia.
Now, instead of feeling sorry for myself, I feel overwhelming anger. I am not angry because I had to go through it all, but because I talked to many people – terminally ill patients and their relatives – who were not as lucky as I was or who did not get treatment early enough.
The UK lags behind Poland in the average time needed to diagnose a brain tumor from the moment the first symptoms appear. Due to the problems with cataloging and indexing these kinds of cases, it still seems to us to be a rare disease, and that’s not true. Once we realize this, doctors will be able to start guiding diagnosis in the right direction, bridging the gap between surviving patients and those for whom a brain tumor is a death sentence.
Text: Pat Long