In 1980, Roelien slowly became deaf. After a CT scan showed a small abnormality of the balance nerve at some point, she was referred to a specialist. After undergoing another CT scan, she was diagnosed with a bridge angle tumor, a benign tumor. Whereas the primary care doctor maintained it was not really urgent, the neurosurgeon was of a different opinion; surgery was urgently needed and the possible risks of the operation were severe.
On January 19, 1981, Roelien was operated on. The operation went well, but the results of the pathological report indicated that it was not a bridge angle tumor, but a chordoma; a rare, but according to neurosurgeon Dr. Pondaag benign embryonic bone tumor, which can often recur. An annual MRI scan was therefore necessary. At that time, information was scarce and virtually no research was done. Roelien had to rely on the information the doctor could provide because simply Googling on the Internet was not possible then. By persistently asking questions, Roelien obtained the information that was important to her in making decisions regarding her treatment.
After five years, not only did the chordoma return, but it had shifted and grown. The decision was made to operate again and, like last time, the tumor wass approached from behind. Roelien asks about the risks of the operation which turned out to be the same as last time. Similar to the first time, the operation, fortunately, went well and within a week she was back with her husband and four young children.
Unfortunately, six years later the tumor returned. This time it was decided to approach the tumor from the front and this operation went reasonably well. However, the left side of her face became slightly paralyzed (but it’s not very noticeable) and also slightly numb because the trigeminal nerve is slightly damaged. After two years, another operation follows to remove all the screws and plates that were placed during the previous operation. Unfortunately, not everything is removed and another operation must follow.
Roelien has a tremendously positive attitude and is grateful for this gift that enables her to repeatedly deal with recurring chordoma and all that it entails. She also draws much strength from her faith. After the initial diagnosis, Roelien, as the mother of a young family, is very emotional for several days. But a passage from Psalm 27:7 provides her with guidance; "If I had not believed that in this life, My soul would enjoy God's favor and help, My God where was my hope, my courage gone? I had perished in all my grief and mourning". From that moment on, she experienced acceptance and confidence that all will be well. This positive feeling seems to return before each operation.
In 2007, the tumor is back and seems to be growing slowly. This time an operation is too risky because there is already too much scar tissue and damage from the previous operations. The doctor suggests proton radiation but has no clear answers to all of Roelien's questions. She decides to contact the Paul Scherrer Institute (PSI) in Switzerland and arrange the proton therapy herself - 35 radiations follow.
PSI had arranged for her stay. Roelien brought her bicycle so she could leave and run errands. The radiation caused severe fatigue, but soon she felt energized and could drive a car. She had to fight with the insurance company to get everything reimbursed, and she wants to point out that you always have to keep fighting. Roelien has to undergo annual MRI scans for the rest of her life.
In October 2007, Roelien received a letter from PSI addressed to her treating physician in the Netherlands. It states, among other things, that after radiological examination, PSI believes that the tumor is chondrosarcoma (a rare form of cartilage cancer) rather than a chordoma. This is confirmed by pathological examination of the tumor tissue obtained from previous surgery. This is good news, as the prognosis and chances of permanent control of the tumor with proton radiation are now significantly better.
Unfortunately, it doesn't stop here. In 2008, a benign breast tumor had to be removed. She recalls that in early 2009 she hoped that from now on there would be no more recurrences. But, in February of that year, she vomits frequently and has a huge headache. It turns out to be a significant bleed in the bridge angle area and within a week she has a second hemorrhage.
Because of all the radiation, Roelien has become completely deaf in her left ear. Fortunately, Roelien found a solution for this through the hearing center that works very well. Using the CROS system, sounds are transmitted to the right ear. And with the Phonak Compilot around her neck, Roelien can, for example, follow the news on television. She also uses the Belman wake-up and alert system, for the front doorbell, for example. Practical solutions that make life easier and more pleasant for Roelien. Moreover, everything is covered by insurance.
Roelien has been through a lot in the past 42 years. Her husband and children have always supported her and she draws a lot of strength from her faith. She has a very positive and also grateful attitude, but everyone needs an outlet and Roelien finds that in her garden. The garden is her therapist; a place of peace and beauty, but also a place to let out sadness or anger. Roelien is very active and in addition to maintaining her garden, she visits the elderly, is active in the church community, and also runs collections for charities.
