Rhena Marie Addatu, now 30, from Batangas in the Philippines, was 19-years-old when she first started having symptoms of what would later be diagnosed as a tumour. She was studying Information and Communication Technology Management at a college in Pasay City in Metro Manila at the time when she began experiencing numbness in her leg and she developed a limp. As a child, she had some problems using her right hand but she hadn’t thought much of it at the time. Then, when she was at home visiting her parents, she started experiencing splitting headaches, just one day before she had a check-up appointment with an orthopedic doctor.
Rhena said: “Life was hectic, so I brushed off the idea that the issue with my leg could be connected to my health. But it was bad – I couldn’t walk in high heeled shoes without tripping over in them. Then, I woke up in the middle of the night with a severe headache on the left hand side of my head. The pain kept going and coming back even stronger and soon I couldn’t bear the pain at all.”
Rhena’s parents took her to A&E and she was told that she had a migraine and given some pain relief for it. The orthopedic doctor who she saw a couple of days later referred her for a CT scan due to concerns over nerve damage in her spine. Her dad also sought a second opinion from a relative who worked at the Philippine Orthopedic Center.
Rhena returned to college to take upcoming exams and relied on paracetamol to manage the painful headaches she continued to have. However it wasn’t long before over-the-counter pain relief didn’t work anymore for her. It even became too painful to brush or tie her hair back which was starting to fall out. She was also experiencing numbness in her hands which made it difficult for her to write. The limpness in her leg meant her flip-flop shoes would often come off her feet too.
At the appointment for the CT scan, Rhena and her parents were given the devastating news that she had a brain tumour.
“The consultant finished reading my x-rays and then he said to my parents: "Your daughter has a brain tumour". My head was pounding, I had no clue what they are talking about. All I wanted to do at that moment was to sleep because my head was full of the drilling sensation of a headache.”
Rhena was referred to a neurologist for another appointment and she was then sent for an MRI scan. Such procedures cost a lot of money in the Philippines but fortunately a family friend, who was a pastor, lent them the money so the scan could be carried out. This confirmed the tumour on the back of Rhena’s brain which had grown to around 6cm. It was recommended that she have surgery to remove it but she was reluctant due to the costs and also the risks involved.
She tried to manage her condition in other ways including changing her diet and reducing her reliance on pain killers even through the excruciating headaches continued. Rhena also began regularly vomiting and losing weight. She went back to the neurologist in her province who once again insisted she had the surgery as her condition was not stable and because she had a fluid build-up on her brain which was causing high pressure. Rhena agreed to the operation in February 2012. However, she changed her mind due to the risks involved and continued to change her diet in the hope of it boosting her health.
Her condition continued to worsen until she had her first seizure in April and she was readmitted to hospital. The pain continued to get worse, she had a constant buzzing in her ear and she had to always be in a dimly lit room.
As a Christian, Rhena attended a meeting with her different churches and she was blessed by the congregations. However she continued being sick and was so weak that even getting out of bed became a gargantuan task.
Rhena was also unable to play her beloved violin due to the numbness throughout her body and she needed help from her mum to clean herself. She saw as much of her family as possible and she took lots of photographs with them in the days which led up to the surgery. During that time, she also lost her sight due to the pressure the tumour was placing on the optic nerve.
She was once again admitted to the hospital after attending A&E and the decision was made to have surgery in May 2012 at the Philippine General Hospital. They were warned of the risks including how Rhena could be in a vegetative or comatose state after the surgery.
Rhena said: “The physician looking after me couldn’t say if I would be unwell or not after the operation but there was no time to spare – my life was on the line. On the day of the operation, uncertainty loomed above me – I just had to have peace of mind that no matter what happened to my body that all was well with my soul. Family and friends waited at the hospital and others were praying for me.”
During the nine-hour operation, all of the tumour was removed so Rhena didn’t need any further treatment. Tests confirmed that Rhena’s tumour was a Grade 1 Astrocytoma.
Rhena said: “Because the problem was caused by the tumour, there is still a chance that my eyesight may return but I don’t know when that may be. I also lost the ability to talk for around three weeks and the only words I could utter were ‘nah’ and ‘no’. It was so frustrating. My father came up with an idea to tie a plastic bag with some coins in it to my bed so I could let them know when I needed something. I could put my thumbs up or down for some questions too.
“My physical recovery was so painful. I cried every time I started a new activity with my physiotherapist who pushed me to my limit. But we didn’t stop until I could get out of bed, walk, do basic things on my own or with just a little help. It was worth it. My speech therapist also had to teach me how to swallow again and I realized that I couldn’t smell or taste anything. Thank goodness that came back in the few weeks which followed the surgery. I do consider myself blessed because my memory is still intact.”
Now, nine years later, Rhena’s hearing is still reduced and the right side of her body is weaker than the left side. She is concerned about the ongoing risk of having seizures although one hasn’t taken place since November 2019 and she takes anti-seizure medication to control it. Her most recent scan, which was in June came back clear with no signs of tumour regrowth. Rhena’s eyesight has sadly not returned although she hasn’t lost hope that it may come back in the future. Until then, she uses her powerful imagination to life about what her surroundings may be.
She said: “The first two years after the surgery were so difficult. I cried a lot and it was very hard to accept my situation. As the years went by, I have grown more accustomed to the darkness. I still cry to let my sorrows out but not to the point that I will let it impact on my mental health. I am clinging to my faith that one day my eye sight will return. If I lose my faith then I would be accepting defeat. Miracles do happen.”
Rhena is now spending her days having therapy, listening to audio books and a range of music types from pop, classical and country as well as playing piano with her left hand. She has recently also been able to play her beloved violin again for just five minutes a day to avoid overstretching her brain. Having had a seizure whilst practicing nine years ago, she was too scared to play even one note on the violin until very recently.
It was when she was browsing the internet last year that Rhena found The Brain Tumour Charity’s website and the information about side-effects, many of which she was experiencing. She has also joined the Young Adults closed support group on Facebook and taken part in many online meet-ups with people who are in a similar situation to her.
"The Brain Tumour Charity’s support services have been great – they have accepted me for who I am. At the beginning, I didn’t want to tell people that I couldn’t see as I was afraid of rejection. But that doesn’t matter here. It’s so good to know that I am not alone in my journey. I will be forever grateful to The Brain Tumour Charity because, without them, I wouldn’t have met so many people who have helped me."
Rhena added: “Now, I am sharing my story not to be criticised or to be pitied but to reach out to those who are struggling with this deadly disease. Don't wait until you are in a serious condition before you take action. I just can’t justify the wrong decisions that I made. We didn’t do what the medical team said but I am fortunate enough to have survived.
“Listen to your body and take the time to relax and look after yourself. You never treasure something until you lose it. You may wonder: “why me?” but try not to worry although I have been in your shoes too.
“The emotional support from your family and also from your friends is very important in your time of need. Try not to let your illness make you feel negative about everything – laugh, smile and be optimistic even if struggle surrounds you. Every scar has a story. My story reflects that, with a positive point of view, you can have peace of mind.”