Navigating Brain Surgery: A Week of Journal Entries for International Brain Tumour Awareness Week

As it’s International Brain Tumour Awareness Week, I want to share a journal entry from January, every day this week. I’ve received messages recently from people who have found my blog and have discovered they need brain surgery themselves. I can tell from their messages that their diagnosis understandably feels all-consuming. One girl even said to me that she wasn’t sure she would be able to do anything or enjoy herself at all whilst waiting for a date. I felt the exact same when I first found out.

Those days of living in limbo and not having a date to plan around made everything far more uncertain and scary. I emailed a lady who’s book I was reading at the time, a previous patient of a private surgeon I was due to see. She wrote on the bottom of her email “I hope that you can find just a few moments each day to take your mind off it.” Even that felt impossible. But I somehow managed it.

I had the best year despite knowing surgery was on the horizon. I did so much and travelled a lot. I won’t lie, a lot of the time it was incredibly hard, but mostly only when I would sit down to write at night and think about it. The other times, I lived my life like I knew a pause was on the horizon. I really hope that if you’re currently waiting for your surgery that you understand that it’s okay to feel petrified a lot of the time, even if you put on a brave face. But you should absolutely carry on, knowing this is only temporary. It will soon be behind you and you are stronger than you think.

Monday 14th January 2019

Booked my consultation with [private surgeon] for 10.40am next Tuesday. Anxious at the thought but also partly relieved that I can soon get some clarity and put an end to the uncertainty. I’ve been dizzy all day and when reading through my [hospital] notes and referrals, I realise I’ve been complaining to doctors that my vertigo has worsened in the past two years. Trying not to worry or overthink but Dr Kay was right – he has turned me from a well person to a worried well person and I’m now jumping at clues – trying to work out whether it’s related. I felt truly sick to my stomach whilst reading Jo’s book (patient who had [surgeon] also). Her surgery chapter is so graphic, my stomach was doing it’s usual somersaults. Intrigued to read on though.

My ‘Brain Box’ arrived from Brainstrust and it’s one of the most thoughtful things you can receive – leaflets of information, books to record appointments and meals, a book written by another patient on ‘living with low grade tumours’, some hand cream, teabags and a brain stress ball. It’s just such a thoughtful thing to send to people to let them know they’re not alone. Need to thank them.

Watched a film with the team tonight in the snug with a bowl of popcorn. [Guy] was texting me about a new brand. I was so close to telling him but resisted – reminding myself he’s no longer part of my life. Same with my Dad. I cried walking home at the realisation he doesn’t know his little girl has a brain tumour and is about to have a major operation. But then I felt guilt because my Mom has been incredible and she’s honestly more than enough, but I still felt a pang of sadness.

I feel like I’m lying to everyone I love by not telling them and I can’t wait for it to be over so I can just be honest with them and go back to normal. I don’t want to think about the fact seeing my Nan on Friday evening might be the last time for a few weeks, maybe months. It will be awful not telling them when I go for the surgery. I know I’m in safe hands and it will be fine but there’s always a chance something could happen. I worry about it growing back and needing further surgery or of developing epilepsy and not being able to drive for a while. But I know worrying is pointless. Need to try to switch off until next Tues.

Whilst you might not currently think it’s possible to have moments where your upcoming surgery doesn’t consume you, you will look back and realise that you did. Each moment is leading us somewhere whether we know it yet or not and most of the time, the reaction to our current situation is decided by our mindset.

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