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May – Brain Tumour Awareness Month

I’ve not posted for a long time. In fact, I have only written two posts so far. After having received my diagnosis it was very much a coping mechanism. I’m a talker and therefore telling people really helped me. The reason I’m writing again is because May is brain tumour awareness month and this suddenly inspired me.
So much has happened since my last post. Importantly, I finally got to see a Neurosurgeon in Southampton when I was told I needed surgery. The thought of having brain surgery is a pretty scary thing. But I was glad to have closure. I knew. Knew they are going to break open my skull and try to remove the tumour which happens to sit next to the brain stem so they have to move some stuff around. I asked him what kind of music they were listening to during the eviction. Music has always been important to me so in my opinion this was a valid question. They won’t though, they won’t listen to music. I find this a bit upsetting but guess there are other things to worry about. So far, I have only met one of the Neurosurgeons, the chief I had on the phone. He cracked me up, he was so funny. The reason I couldn’t meet him in person was due to the Covid-19 pandemic. I am so pleased he called though. I have told him, that before he cracked my head open I’d want to meet him face to face. At which point he laughed and told me that was fair enough because what if I didn’t like him. But I did and I guess he liked me too, reflecting in his letter I later received in which he wrote “It was a pleasure talking to Simone on the phone”.
I should have had my surgery at the end of February, but appointments have been cancelled and cancelled and cancelled again. Currently I’m waiting for a new appointment to come through. But who knows when this is going to happen. In the meantime I keep plodding on, try to do my best at being a Mum and concentrate on building my business.

As it’s brain tumour awareness month I would just like to say, the chances of having a brain tumour are extremely small. But if you think something is not right go to the doctors and keep going until you have an answer. Ask for a second opinion if something doesn’t feel right. That’s what I did and I’m glad I did.

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How it all begun

How it all begun is very difficult to say, simply because I don’t know. My GP doesn’t know, the neurologist doesn’t know, no one does. It is very likely that I’ve been living with my tumour for years, possibly since childhood. This is very often the case and many people are not even aware they have a little friend happily living in their brains while they just crack on with life. In my case there is a high chance that my tumour grew during pregnancy. It is suspected that the culprit responsible for the growth were hormones such as progesterone. But yet again, no one knows for certain. My possibly first symptom was when I was 27 weeks into my pregnancy, and I remember it as if it was yesterday.  After I woke up on a Wednesday morning I noticed when brushing my teeth, that the area on the right side of the lower part of my face went numb. It was slightly worrying but all I did was standing in front of the bathroom mirror, sticking out my tongue, smile to make sure both sides of the face looked the same, raised my arms and repeated three times “Fischers Fritz fischt frische Fische, frische Fische fischt Fischers Fritz.” A German tongue twister and after being able to say it quickly, without actually twisting my tongue I happily came to the conclusion that I wasn’t suffering a stroke and off I went to work. Whatever you do, do not diagnose yourself, ever! However, during the day the numbness spread to the whole right side of my face and by the evening even my skull felt numb. The morning after I did something I very rarely did; I went to see a doctor. They’ve diagnosed me with Bels Palsy. But I didn’t tell them the whole truth; that the numbness has spread over my shoulder and down to the arm. But you know what? I knew I wasn’t going to die and left it there. Having one side of the face numb felt alien. I couldn’t feel if there was any food left on the corner of my mouth or if I was dribbling when drinking. But I just cracked on with things as if this was normal and, in the meantime, I have given birth to the most beautiful little girl. Two weeks after this big event, the feeling in my face reappeared. Yay! After a while I started experiencing numbness down my right leg and felt slightly unbalanced. But I used the push chair and could hide it all very well. I kept walking and walking every day, everywhere. It feels I did nothing but walk. Walk here, walk there, walk everywhere. All the time. With the push chair to hold onto. It was fine. I was fine. I kept lying to myself. I knew. I knew something was seriously wrong. But I did not admit. Not to my GP, not to my daughter’s Dad, not to myself. Because, I WAS FINE! Apart from that I wasn’t.

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Not so lazy after all

Lazy brain. That’s how my daughter sometimes calls it when I say something wrong or can’t remember things. But I tell you what, my brain is not lazy. Not even a little bit. In fact, it has been working so hard that it managed to multiply cells. Into a brain tumour. Brain tumour. That’s right. According to my GP out of 40000 patients at the surgery I’m registered with, only one GP per year is being allocated a brain tumour patient. Wonder if he got extra commission. I mean, out of 40000 patients, 1 per year. That’s quite something right?!

This number is not from the national stats, it’s slightly lower but I don’t really want to write down facts otherwise I have to reference them and there’s a very good reason I chose to have a study break. This just sounded like the break is due to the referencing. Even though it can be hard to get this completely right, the actual reason for taking a break is my lazy brain. Taking a break from working towards a bachelor of science in, wait for it… psychology; the scientific study of the human mind and its functions. Somehow funny. But I think because I do like psychology and brains, this is the reason why I am so amazed and in absolute awe to have a picture of my brain. Of my beautiful, symmetrical and wonderful brain. Simply one of the most mesmerising things I have ever laid an eye on. Well, apart from the tumour in it.

Meningioma is the name of the tumour, the type if you want. It took me a while to learn this word. Words are not really my thing anyway, I do prefer numbers. But imagine they would number each illness. Are there even enough numbers on this planet for the amount of all existing illnesses? Diseases partially made up by pharmaceutical companies to make more dollars with likewise made up medication to treat the phantom diseases. You get it. And now back to the subject.