The Roller Coaster

January 9, 2020

I survived 2019 but not without a few bumps and scrapes. As it turns out, my brain is still (since 2008) herniated, although not as badly. This is potentially a reason for my excessive heart rate and the seizures which are NOT non-epileptic!

This brings me to the crux of this piece. As I fly to Melbourne for Charles’ 23 + 23 reversed birthday, loaded up with P2 masks to combat the smoke from the fires, I am reminded of a careless comment made by a friend.

At least if it was a brain tumour, they could cut it out and it would be all over!

Except it doesn’t work like that. Brain tumours are like squatters. They live in places that don’t belong to them. They wreck the joint, bring friends, have wild parties and vandalise whatever they can. After they have been evicted, they can return to the scene of the crime or perhaps another place in the same complex. Rinse and repeat. The owners have a lot of damage to take care of and in some cases need to bulldoze and start again.

In my case, I lost memory, I lost some cognitive function, gained left-sided weakness, gained brain herniation, gained hemifacial droop, developed seizures (epileptic and non-epileptic). Lost my sense of reality, lost skills, and even lost my sense of self.

I will be 9 years post-op next month. My medication bill is in the hundreds per month. I have facial and neck scarring as a reaction to the only medication that was keeping me alive for 8 years before surgery. I still have memory issues though that has improved over time with work. I have successfully completed a Bachelor of Psychological Science and gained an academic excellence award during that time. I have also been accepted into a highly competitive Master of Global Public Health.

All is not however rosy or by any means easy. I must budget my time and energy. Travel, while I love it, is exhausting and can have a serious physical toll. Travel insurance companies will not cover me without paying excessive premiums for my pre-existing condition (brain tumour – now removed). i.e. during a recent trip through Europe, our luggage went missing. I had to find a local doctor to write replacement prescriptions and then find an open pharmacy at 11pm to obtain my medication. This all for the princely sum of €400!  Our travel insurance refused the claim. The alternative was NOT replacing my medication and spending an unknown amount of time in a foreign hospital.

International travel means hundreds of dollar worth of medication taking up all my carry-on luggage, letters from doctors, replacement prescriptions, medication and condition lists and of course balancing medication timing across time zones.

There have been years of physiotherapy, years of psychotherapy, years of follow up appointments with a wide range of specialists. Navigating a dysfunctional and confusing health system has been a nightmare.

A brain tumour is not as simple as having a tooth pulled or an appendix out. The implications are life long, and life-limiting. There is nothing simple or easy about it.

I have dedicated Life 2.0 to making this journey (I hate that word), no, rollercoaster, as easy as possible for others living with a brain tumour, their families, their carers, and their clinicians. Brain tumour affects everyone in that person’s life in some way, big or small. It doesn’t matter if it is malignant, low grade or brain metastasis. It destroys lives and has a far-reaching impact.

Before I boarded this flight, I contacted some medical professionals I know in Melbourne to find out my best/safest course of action should my brain decide to misbehave while I am away. I had to check things like ambulance cover. I am only away for four days. 'Well' people don’t have to consider all the 'what ifs'.

I am not writing this to complain about my life. It is more to educate and to illustrate that brain tumour does not stop at treatment. It has a lifelong impact.

For me, part of that has been finding my own two feet (literally and figuratively), finding out who I am and recognising that I have value. I count. I am worthy. I struggle with that some of the time as I have spent so many years feeling like a burden. I have had the privilege of getting to know some other amazing people around the world living with a brain tumour, their families, carers and some incredible specialists who make enormous sacrifices for the people they care for. I have met and sat with those were at the end of their lives. My own mother ultimately died with brain metastasis from small cell lung cancer.

I feel lucky that I have what I consider this time in credit and aim (am) doing what I can to ease the way. I would have been dead by mid 2011 but am still here, determined as ever to change things for the better.