Ashley Janarthanan tells us about her 12-year battle with the condition.
“I was diagnosed with a brain tumour when I was 23. I had been having terrible migraines for years, so when I found out, I actually felt a sense of relief because I finally knew what was wrong.
The type of brain tumour I have is called Craniopharyngioma. It’s when the tumour develops near the pituitary gland at the base of the brain. The pituitary gland controls several hormone glands in the body, so even though my tumour is benign, it caused my hormone levels to plunge.
I was put on hormone replacement pills. Without them, I’d vomit a lot and not have any appetite. And because I was also low on cortisol, the stress hormone, it was difficult to get out of bed in the morning and deal with stressful situations.
From the get-go, my doctors recommended that I undergo surgery to remove the tumour. Back then, the procedure involved [the insertion of a] microscope. I found it too invasive, so I left the growth alone for five years. It was only in 2012 that I went for my first surgery because it started to push on my optic nerve and affect my vision. However, the tumour grew back within a couple of months.
I’m 34 now and I’ve had seven surgeries in all. However, the tumour still hasn’t stopped growing back. The aggressive regrowth wasn’t something my doctors expected and they’ve tried using different methods to make the tumour go away for good, like putting in fats or draining it. But none of them have worked.
Last year was a particularly bad one for me. I underwent two surgeries, but they didn’t really help, so my doctors suggested that I give radiation therapy—which can help shrink the tumour by killing new cells—a go. But radiation therapy takes a huge toll on the body. I lost all the strength in my arms and legs and my brain swelled up.
I was given steroids to control the swelling, but a major side effect was water retention, so I bloated up a lot and expanded and shrunk really quickly. This resulted in stretch marks.
Aside from the hair loss, I suffered from nausea and fatigue. I felt so drained all the time and found it difficult to even walk from room to room, much less up the stairs. There were times when I’d be so exhausted that I would start shivering, and I’d have to take a cab home immediately from wherever I was so I could lie down.
Even though I fell into depression, I had to push through and complete all 28 sessions because the treatment isn’t something that can be repeated. Our optic nerve can only take so much radiation, so if I messed up the sessions, I wouldn’t be able to redo a cycle. Plus, the less consistent I was with the sessions, the lower the overall effectiveness.
My condition made it impossible for me to work long hours, so I had to leave my job in the film industry very early on.
It has also limited my hobbies—during one of the surgeries, they removed my nasal septum, so I could no longer do any high impact sports because if I get hit in the nose, it’s just going to fall apart.
I still get migraines that last up to a month, but they’re not as intense as they used to be. Some people are lucky enough to be able to identify what triggers their pain, but I haven’t been able to identify mine. After nearly 12 years of living with the tumour, I’ve gotten used to always feeling some degree of discomfort and nausea. So when I have good days, I make sure I don’t stay home—I try to go swimming or get stuff done. I also try to travel whenever I can.
The good news is that, when I went for a recent check, it was found that the tumour was shrinking thanks to the radiation therapy. Now I’ll just have to wait and see if it’ll grow again. My surgeon told me that the brain tumour I have is actually really common and that he handles a new case every week.
If you find yourself with a brain tumour, I’d suggest that you find a doctor that specialises in the type of tumour you have. It’s also important that you find someone to talk to. I’ve seen many people internalise their conditions and blame themselves for their illnesses. This only makes them spiral into depression at full tilt.
My condition has certainly changed my approach to life. I now take things one day at a time because I’ve come to see that if something is out of my control, there’s no point worrying about it. I’ve become more carefree in that sense. Life is short enough as it is, so don’t waste it on things that don’t matter.”