Showing Emotion: A Week of Journal Entries for International Brain Tumour Awareness Week

I know that my Mom might get her back up with this post and adamantly argue that she didn’t say these things. Sorry Mom, but you did. However, I will just say, this whole year was incredibly long and difficult, and actually probably worse in many ways for a parent.

Although it hasn’t always been simple and easy and despite the many disagreements we’ve had (god, you would have thought it was her that had brain surgery this summer!!) none of them take away from the fact my Mom has been unspeakably incredible throughout this whole ordeal. From moving to a hotel in London whilst I was in hospital, away from friends and family. From taking time off work to care for me when I was back home and needed someone to wash my hair, cook for me and do my washing. And from checking in on me constantly – I mean, dare I answer on the days I’m actually not okay (just kidding, kind of.)

We have new disagreements about botox and how I should just “get a bit here and some there, and then that would stop the good side from overcompensating.” But that’s parents for you. They mean well but you can rest assured Mother, that I don’t look the way I do by choice and as soon as I can do something about it, I will.

I don’t always say it, because we were taught to be strong and somehow that doesn’t involve random outbursts of affection, but things you do don’t go unnoticed. I am beyond grateful to have had you by my side this year and definitely get my strength from you. 

Tuesday 22nd January 2019:

I met [private surgeon] today. I liked him. I thought he was warm and welcoming but he threw a massive spanner in the works when he told me this really is major surgery and not a decision that should be taken lightly. At first I didn’t want the surgery. But I’ve spent the best part of a month talking myself round the idea. I’ve started planning like I would be having it straight away, in Feb, privately.

After talking to [private surgeon] today, he advised it’s not a decision to take lightly. Knowing that the life of a very well and able 24 year old is in his hands, he doesn’t want to conclude anything until he has had more time to analyse and discuss it at his MDT meeting Friday.

What he did say is that the complications are huge and I really need to weigh up the risks of having it now or postponing and taking an observation approach. Maybe never needing it or maybe needing it more urgently. It’s a horrific decision and one I wish I didn’t have to make. I actually think I’d rather they would have said it’s necessary to do it right away and you have no choice. My Mom has been amazing until this point when, after getting upset with the shock and taking the afternoon off [work], she remarked “you just need to park it and not be negative else you’re going to lose your job.” Like Soph said, maybe she just doesn’t know how to deal with it and her telling me to park it is actually because she feels she needs to park it.

I was fine this afternoon but got upset on the phone to Soph. I felt such a huge relief when she told me I was allowed to be sad about this and I released my tears uncontrollably, all at once, at the realisation that “anyone with a brain between their ears” would be fully supportive of that. I feel such a pressure to be 100% positive all the time and I often feel so alone and scared with it because I cannot, or don’t want, burden anyone else with this. But again, Plims assured me I’m not a burden and to call her whenever I’m sad, telling me she feels sad for me having to go through this.

David was also amazing. I told him last night and he text me hoping it went well today. I met him for lunch at Pret straight after and he instantly made me feel better telling me we will make a list of all the questions I need to ask in order to weigh up the risks and work out the best plan of action.

I’m just so emotionally exhausted. The doctor also said he would advise the surgery to be done on the NHS and preferably in Birmingham as I will need my family. So I contacted Mr Kay asking him to take me back. I know his wait lists are long which also does buy me a bit of time knowing it will probably be a few months before anything happens. I do think I obviously need to just try not to worry about this for the next two weeks as I cannot do anything about it and wait and see what conclusion [private surgeon] comes to.

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