‘Germinoma of the third ventricle.’
A what…? I was thinking as a doctor pointed at a section of my brain scan. It was a large grey mass. Brain cancer.
I kept repeating it in my head. It was real, but I felt nothing. I was numb.
I knew something was wrong back in 2014 when I started to have severe memory issues.
My manager at work once used to call me an elephant, because I would remember everything – but soon I was forgetting even the simplest tasks.
I also, seemingly out of nowhere, began having hallucinations.
I remember walking down the street, chatting with friends, then I turned around, and the street was empty. My brain had made me see something not there.
This shocked, confused, and scared me – I was only 26 – and eventually led me to book in to see my GP.
They indicated that my hallucinations and forgetfulness was a brain related issue. But the words ‘cancer’ or ‘tumour’ were never mentioned.
Within a week I was sent for an MRI scan of the brain. I was booked in to see a specialist immediately after. That’s where I was confronted with the scan of my brain, which showed the large grey mass.
Simply put, a germinoma is a form of cancer that starts in germ cells (the cells that form sperm or eggs) and can cause tumours in different parts of the body including the ovaries, testicles, brain and spinal cord.
In my case, my tumour was sitting in the third ventricle of the brain and was growing ‘against’ my hypothalamus – the part of the brain responsible for working memory.
As terrifying as this was, I was quickly told this particular tumour is highly receptive to treatment, and that the chances of success are high.
Due to where it was sitting in the brain, it would not be safe to remove the tumour surgically, so I was told the best course of treatment was to shrink it with chemotherapy and radiation.
From then on my life was ‘on hold’ while I endured three rounds of chemo, and one month of radiation therapy. I was officially a cancer patient in my mid-twenties.
‘You’re young, so your body is strong enough to cope,’ nurses told me. Still, it felt surreal.
Throughout my treatment I remember feeling like I was missing out on life.
I missed going to work as I’d been thriving in my role as a client services executive. I’d enjoyed schmoozing clients from across the globe and had always done well as I was able to recall sales at the drop of a hat – but the tumour put a halt to that.
I missed going out with my friends and just the freedom I’d had before cancer.
But I also knew, to have a chance at getting back to all that, I had to keep fighting.
Thankfully, my treatment was successful and after 18 months of chemotherapy and radiation, I was overjoyed to be cancer free.
Yet life after brain cancer has been anything but easy.
To this day, roughly eight years post treatment, I’ve been unsuccessful in re-entering the workforce – though not from lack of trying.
Since 2015 I’ve tried extremely hard to return to work, but failed many times – 14 times to be exact.
I did not tell any of these companies that I had brain cancer during the interview process – I worried that, if I did, I either would not be hired, or my CV dismissed before they even met me.
In four of those workplaces, I was employed for only one day. That’s all it took for them to realise that there was something wrong with my memory.
I don’t really feel like I was ever given a real chance to succeed, which is frustrating.
Not only have my work prospects been impacted though, but my personal relationships have suffered too.
Despite knowing about my damaged memory, I found that, sadly, both my friends and family would still get annoyed at me for repeating myself, asking the same questions and forgetting information.
As such, the excitement I once felt about seeing a group of friends was soon replaced by anxiety and nervousness because of my fear of repeating myself and annoying them.
And because I found it hard to keep up with multiple conversations happening all at once, I tended to shy away from attending large group gatherings in general or I made up excuses not to go altogether.
All this meant my circle of friends drastically diminished. I’ve lost confidence in myself.
When people noticed my forgetfulness, a common and frequent suggestion I would get was to ‘write it down’. But I was already doing this, in fact, I made it a point to always have a pen and notepad with me to do exactly that.
I take notes for everything: I write a to-do list for myself everyday and carry it with me in my handbag, or leave it on my desk if I am at home and I follow it to the T.
And, before I met my now husband, I used to jot down every detail from every date I went on so as not to offend anyone if there was a second.
Find out more about Linda
You can find out more about Linda’s book, Memory Fail, here
All these notes, both past and present, have been transferred to my laptop so I can always refer back later if needed. In total, I have 10 over-arching folders dated between 2015 and 2024, within each year are 12 sub folders for the months and then a separate word document for each day.
So yes I am very organised, but it’s really not possible to write everything down.
All I can do is my best, because it’s not exactly polite to respond to a question with: ‘Wait a moment, let me refer to my notepad’ is it?
It’s taken a long time to do so, but I now accept that I will always have a damaged short term memory. And while that means I can no longer work in any job that is fast paced or that involves multi-tasking, that doesn’t mean I can’t have a good life.
That’s why, this year, I wrote a book.
Memory Fail details my cancer journey, all the way from pre-diagnosis, diagnosis, treatment, and life post cancer. My purpose for publishing it is to show other brain cancer patients that they are not alone in their struggles.
I also hope it provides a deeper level of understanding of the impacts of brain cancer to friends, family and care-givers.
Because though brain cancer is an invisible illness, according to Cancer Research UK, there are roughly 12,700 new cases of brain tumours each year. That’s a shockingly large number and we need more understanding.
If you had a broken leg, no one would tell you to walk faster. So why would you tell a brain cancer patient to stop being so forgetful?
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
Share your views in the comments below.
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