The tumour story
Dear Alex and Priya,
best of wishes to you both, hope you guys are doing good.
Here’s the full account:
I’ve always been an active girl and joined many activities in uni especially in Year 1 and 2.
However, I noticed that at the start of year 2 I was getting super fatigued and my menses did not come for close to 9 months. I was also feeling so depressed and very unmotivated study-wise. Also, because of a personal conflict that added on to me being so very recluse and I was often afraid of people I barely knew judging me even though I was supposed to be active (and definitely meet new people) when I joined a new residence in school.
My mum and I decided that we head to the private gynaecologist to check what went wrong, but hormone test after hormone test and even an ultrasound, they couldn’t find anything wrong.
That’s when we decided to consult the endocrine specialist at the local public hospital, National University Hospital Singapore (NUH for short). Shortly after, I was also experiencing tinnitus that occurs at night and decided to get to the ENT specialist as well. I realised too that I was also experiencing frequent headaches (migraines even) and vomitting episodes in the car especially.
Fast forwards, the endocrine and ENT both did not find anything wrong with the tests’ results. The endocrine specialist then decided to do a pituitary MRI just to make sure nothing is really wrong with it.
It was a really long MRI session to be honest, I was lying close to >1h in the machine, it was only then when I realised the radiographer was shuffling in and out of the room that something must be wrong. When I came out of the room, the radiographer told me a doctor would explain all the results to me in detail and I would have to go to the A&E to be admitted. The Medical officer (MO) then told me that they found a 5cm mass at the back of the pineal gland and I was to be admitted for emergency purposes as I also had a severe condition of hydrocephalus.
While in the A&E the doctors explained to me that I would have to do a minor surgery to insert an extra ventricular drain (EVD) so that they can divert the flow of the fluid as the tumour was blocking the ventricles. I didn’t fully understand the gravity of this and only realised when I was awake from surgery that the drain was stuck to my head. Wow I think I panicked for a bit and thought the EVD was loosely attached to my head lol!
Then the doctor explained that they would have to biopsy the tumour and if it were resectable they would resect as much of it as possible. To be honest, i was so frightened at the thought of a tumour, I thought it was cancer (but of course then I didn’t know that to having brain cancer is indeed a death penalty to many). The week after they scheduled the surgery, it was my first major surgery and to be very fair, I was the least prepared and definitely wasn’t well briefed by the doctor of the extent of the side effects that the surgery would have. My doctor did do a fair job at explaining the general effects though. However, I woke up with Perinaud’s syndrome (they dug too deep into the tumour and possibly caused it). Furthermore, I couldn’t see half of a person in the left eye and experienced hallucinations or cartoon characters drifting in and out in the right.
The third surgery was to do a Endoscopic Third Ventriculostomy (ETV) which was needed to ensure permanent redirecting of fluid. It was definitely not an easy decision for the doctors given that in this situation they would often choose to do a shunt. However, I was persistent and eventually the Head of Neurosurgery (or NES) decided to go ahead with the ETV.
Of course many funny/scary/crazy anecdotes (even getting a shock of my life when they said the ETV wasn’t working and I had to do a shunt (but I didn’t as the radiographers misinterpreted the scans) then and there — I was literally stunned, I shivered for so long) happened during the entire hospital journey, these 3 surgeries occurred over a period of 1 month. I experienced so much kindness from the nurses who took immaculate care when I couldn’t walk (after being in bed for 10 days) and they helped me with getting back on my feet again.
Of course, given that the tumour was not completely resected and a pineal gland pilocytic astrocytoma was completely surgically resectable, I had to do one final surgery in august (I went back home for while in july and decided to readmit for the surgery). It was crazy, because it was being done by Charlie Teo, a world renowned neurosurgeon specialising in pediatric tumours like mine. I kid you not when I literally went bonkers reading about every single thing that he was involved in, his charity CureBrainCancer and the amazing work that he’s done; doing tumours no other surgeons would touch. When the day came I was literally shaking, but I got his autograph and he agreed to kayak with me when I was better (and I did! 4 hours with an incredible man!!!!!).
Of course, because of some brain swelling there had been some side effects such as diplopia and urinary incontinence. However, nothing as bad as what other brain tumour patients face. I feel that overall, the positives were way more than the negatives.
I literally knew who were the people I could count on and the fact that family and friends can never be replaced. Also, I found a calling to Neurosurgery and decided to pursue medicine because of all the experiences I’ve gone through (I’m taking the MCAT now!). Finally, I decided to take up Christianity too ;). In all things, I look back to that experience with great comfort knowing that you can find a glimmer in even the darkest of times! God bless you all :)
(If yall like me to talk about my shadowing experience with NES please let me know too :D)
Here are the answers to the questions yall asked:
What operation did you have and how old were you when you had it?
- Operations you mean, 4 in fact.
1. Extraventricular drain insertion
2. Tumour biopsy and resection
3. Endoscopic Third Ventriculostomy
4. Tumour Resection
I was 20 and eventually 21 when I had it (I had my 21st in the hospital)
Do you remember how you felt? Were you scared?
Numb at first, then frightened (most of the times), then worried, then felt like my life is so gonna be over (before the biopsy — I thought it was cancer!). I also was in pain and anguished (why did it happen to me and not other people? was one question in my head)
Did any members of staff have a significant impact on you?
For sure, the sisters (senior nurses) were impeccable with their care, you literally knew the difference. My doctors, they were patient and responsible in explaining to every detail and risk (They became much more precise after I complained about how no one told me about the hallucinations and the fact that I could not shut my eyes to sleep and the fact that I was a life science student and I understood what they were talking about)
Do you have any advice or tips for nurses caring for neurosurgical patients after your experience?
Definitely know each condition and the specific care needed for each of the condition because being a specialised nurse, you have to understand the patient’s needs to the dot. Given NES patients are generally severely ill, the least any nurse can have is to be precise in their care.
Do you have any advice or tips for neurosurgeons after your experience?
Listen, understand who your patient is, your patient isn’t just a number, he/she is human too. Quell any doubts, worry and just be there even if you are swamped most of the time (I understand this lol) but ultimately remember that the fact that the reason you became a doctor was because (I hope) you wanted to heal. Be the healer you are and be there for the patients.
Is there anything you or your family would do differently if you needed to have another operation?
Nope. They are 100% there, strong as a rock.
Was your family supported well during the experience?
Yep, though in Singapore there weren’t much advice given and we didnt know there was a brain tumour society here so the only form of support we had were familial and through friends, yet they were enough because of the sheer amounts of support.
Ok I’m done, let me know if you need other stuff and if I can help in any way.