Pilocytic Astrocytoma

I always knew I was an Alien

Something that I always used to say to myself recovering from my surgeries is “hey it could be worse? Cheer up!” and I still find myself saying that 4 years on!

At the age of 12, I used to have headaches with the occasional spree of nausea, and despite my numerous appointments with my General practitioner, I was not admitted into hospital (his advice was simply “stop eating tomatoes”). Then I made an optician’s appointment and they saw that in the back of my eye there was swollen tissue and suggested I go to the hospital immediately, and after my MRI scan they diagnosed me with a condition that has been permanently engraved into my brain, “Pilocytic Astrocytoma”.

Now me being a (relatively) positive 13-year-old individual screamed to my mother “I ALWAYS KNEW I WAS AN ALIEN”- She never has understood my bizarre sense of humour. Nevertheless, I was operated on and left with mild ataxia (poor coordination of muscle movements) excluding me from my physical education lessons (which has always been an accomplishment I hold close to my heart!). I thought what was left of this condition would be something I could put in the past and that I could carry on with my life. If only that was the case. 2 years later, September 2012, when I was 15 having missed a considerable amount of physical education lessons, I was diagnosed with a recurrence of the same tumour. And I was given two options: surgery to remove the remaining tumour or no surgery and see what happens. Me being logical and wanting to remove the mass of abnormal cells in my brain was a reasonably good decision looking back on it. All that remained was for me to pick a date for this surgery, at the time my mind was deluded by the fact that Halo 4 (a video game) comes out November 2012 so I was pondering whether to have my surgery a month after that so I can play the game

Although I do have an unhealthy obsession with Halo so unsurprisingly that is exactly the decision I made in regards to the date of my surgery!

The second surgery did not go as smoothly as my first one, and as a consequence there are a good 20 days in-between December 2012 and January 2013 that I have no memory of whatsover. During this surgery the surgeon did not remove all of the tumour as some of the tumour was located near vital regions of my brain stem and It would have caused me more harm to remove than good. Also at this time I had a tracheostomy to help with my ventilation and a tube up my nose as I could not swallow. And what was left of the tumour was treated with radiotherapy.

A few months down the line I started my A levels in Biology, Chemistry and ICT. I loathed ICT very much however I did get a C in it which was admirable. Biology and chemistry were more of my favourites and after attaining A`s in both of them I am now doing a Chemistry degree at Kings college London university and getting a First in my first year has only persuaded me to do as well in second year!
On top of this I occasionally give back to my local school via tutoring in science subjects, and at university I am a student ambassador and help prospective students choose what course they want to study.

Things that have helped me throughout my surgery and dealing with the after effects:

  • Friends, this is without a doubt one of the most important things because even a small gesture of kindness to a person in hospital, whether you visiting them or sending them a card goes a long way to improving the patient’s psychological mindset. Also after they have exited the hospital friends encouraged me to move out my comfort zone and try new things.
  • Positive outlook, no one successful in life would be where they are without taking risks, and with a negative attitude the mentality of taking risks seems like you are just preparing yourself for failure. If I don’t take certain beneficial risks in the present I know I would regret not taking them in the future.
  • Perseverance, determination and motivation. Look at failure as a chance to start over with a better mindset, because at the end of the day what is going to matter is your success and all the failed attempts that you endured are going to be worth it. This is especially true for education and improving my physical coordination, motor coordination and balance in my opinion.
  • Something that really helped during revision periods would be having the right diet, I would like to eat fruits or have smoothies of these fruits, for example strawberries, blueberries, bananas and maybe milk.
  • I employ a strategy that seems to work with me when coping with fatigue, I just never tell anyone “I’m tired”, and I refuse to accept it. It doesn’t sound like anything useful but I would encourage anyone reading this to try to refuse the concept and think about other things when tiredness does arise!
  • The last piece of advice I could offer is strive to exit your comfort zone, for example over the 2016 summer I had tried to ride a bike on a few occasions, something a person with my ataxia and balance I would have never thought possible, and to my avail, fortunately I did not fall on my face but I can still ride a bike 3 years and 8 months later! And I am not going to lie there were a few times where it did feel a bit weird, but I can successfully ride in a clockwise and anticlockwise circle, baby steps.

Moreover, If I had no intention to strive out my comfort zone I would never have rode a bike or done my rehabilitation exercises, eventually gone to gym to stay fit, or go to university to do Chemistry.

At the end of the day I am not going to let a brain injury mark the boundary between the things I can and cannot do. And that mentality I would urge upon anyone with a minor/major disability. You are in charge of your life and you are not defined by your disability.


Watch Amundeep talking at the SUCCESS conference in November 2017