My Brain Tumours Part One

This post is about my brain tumours, the factual part.

The reality is, I find it easier to talk about the cold hard facts as opposed to the variety of colourful emotions I feel about it. I don’t see any point in talking about the feeling part. The truth is there is nothing anyone can say to me that will make me feel better, even though they really try. It’s harsh but true.

I know I am loved and for that I am thankful, but no one knows quite what to say. To be fair what can you say? It becomes awkward and then I worry about the person in front of me. I automatically end up comforting them and I tell them everything will be ok, that I’ll survive which for the record I do believe! I want the people I care about to feel better about the situation. I can see that look of fear in their eyes, the look they’re trying to hide. The look I ignore because if I pay too much attention to it, it makes it real. So I say the right things and change the subject. I definitely don’t talk about how I feel, I just can’t because I find it too hard.

Inevitably my feelings do rise to the surface, usually when I have a MRI scan or when an appointment with my neurosurgeon is on the horizon. Then I am forced to remember. Reality kicks in and emotion takes over, my fantasy bubble where I forget momentarily bursts. Maybe I am in denial, but hey everyone copes in different ways.

So this post, is like the background post…the preamble to my brain tumours with some factual information thrown in.

In the UK, 29 people are diagnosed with brain tumours every day and over 5,000 people lose their lives to brain tumours every year. Less than 2% of cancer research funding in the UK is spent on brain tumours, although brain tumours reduce life expectancy by an average of 20 years, the highest of any cancer. Brain tumours kill more children and adults under 40 than any other cancer.*

It’s sobering, scary stuff and something I had never come across before. Not anywhere. I never had any reason to think about brain tumours and I knew very little about them.

The truth is I was going deaf. I knew I was but I didn’t want to face facts. Eventually I decided to go and get a hearing test. I was partially deaf but my levels of hearing loss varied from ear to ear, so as standard procedure I was booked in for a MRI. A week later, I was booked for another MRI, this time I was injected with dye. MRIs involve lying really still in a cylinder machine with my head in a brace, while the machine makes super loud noises as it swirls around my head. MRIs with dye, involves me being injected with dye half way through. I can always feel the coldness of the dye travelling through and around my veins, leaving me with a metallic taste in my mouth. The weirdest thing about MRIs is the lying still part, as soon as you’re told not to move for 30 mins all you want to do is move. Suddenly your nose is itchy or think you’re going to sneeze. The loudness of the MRI doesn’t let any thoughts into your head, well not literally…you just can’t concentrate because of the loud booming techno sounds pumping through the machine. It is like being at a rave with really bad music, sober.

In November 2011, I was told they found a brain tumour. At the time, all I heard were the words “brain tumour” and was thinking “Fuck, am I going to die?!” The consultant that told me wrote down the name of my tumour and told me not to google it. She wasn’t a brain specialist (she specialised in hearing), so there was not much she could tell me. I had to wait six weeks for my appointment with the neurosurgeon.

Six weeks and no googling later (honest!), on Christmas week I had my first appointment with my neurosurgeon. I was diagnosed with a grade 1 posterior fossa meningioma.

According Cancer Research UK, statistics show that 25-33% of all primary brain tumours in adults is a meningioma.** The majority of meningiomas (over 90%) are grade 1. Grade 1, as graded by the World Health Organisation (1 to 4) refers to how brain tumours behave; how fast they grow and how likely they are to spread to the brain.

So this meant I had a low grade and slow growing tumour. These types of tumours used to be referred to as “benign”, meaning non-cancerous but not so much anymore. Mainly because it implies that low grade tumours are not serious, which isn’t always the case. Posterior fossa refers to the location of the tumour. These lie on the underside of the brain and account for 10% of meningiomas.

My neurosurgeon told me it was likely that I had this tumour for at least 5 years if not more. I was told I would need surgery to remove it. The tumour was located close to nerves and if it was left, there was a chance could become entangled in my nerves and therefore difficult to remove as well as potentially causing other problems. I was lucky it was discovered when it was.

It’s difficult to explain the shock of being diagnosed with a brain tumour and dealing with everything that comes with it, your feelings, the feelings of the people you love. The thoughts of “is this it? Is this the end?” I felt like a fraud. I didn’t look sick and I didn’t feel sick. I didn’t have any symptoms that I was aware of.

In May 2012, I had a pre-op assessment and was booked in for surgery in August at the John Radcliffe Hospital in Oxford. The day before surgery I checked into hospital. I was talked through a giant consent form where all the possible outcomes were written out. The ones I remember most clearly at the time were stroke and death. In total there were 15 listed and explained to me, but I think I only remembered those ones because I understood them. To have the surgery, I signed. I was told I would probably have to go into intensive care afterwards and that I might have to have my brain drained to remove fluid. I then had random patches of hair shaved off and these sucker things placed over the bald patches. After all the commotion of talking to doctors and nurses, filling in paperwork, settling in to my new space and saying goodnight to my family and other half, I was left alone with my own thoughts.

I thought about my life, my loved ones, all things I’ve done, all the things I still wanted to do. What if this really is it? What if this is the grand finale?

The next morning came and I waited for surgery. I asked how long it would take and was told we’ll see once we get in there. I didn’t know what to expect or what would happen next.

When I came around, I returned to the ward. Luckily I didn’t end up in intensive care or need to have a brain drain. The tumour was successfully removed and the biopsy of the tumour confirmed it was non-cancerous.

I was in hospital for a week and although the doctors and nurses were amazing, I hated it. I didn’t want to talk to anyone, I didn’t want to see anyone other than my family and my other half. I spent my time in bed with the curtains drawn as much as I could get away with. The thing about being in hospital, even though you’re lying in bed its bloody exhausting. I was woken up on a regular basis for painkillers, blood pressure checks and basically to see if I was ok. It just meant I didn’t get much sleep. I can’t begin to tell you how happy I was when I was told I could home.

Two weeks later, I was booked to have the giant staples holding my head together removed by a local nurse. It hurt like hell. Soon after, my wound started leaking fluid. After calling the emergency NHS line and seeing a doctor, I was told I had to go back to hospital. We arrived at 6am and although I packed a bag, I naively thought I was going to get my wound cleaned up, stitched back up and that would be it. I was wrong. It turns out I had an infection, and I was to have brain surgery again. This time I was hysterical because I knew what was to come. After what felt like the longest wait ever, I went in for my operation. When I came around, I remember the pain. I remember it being worse than the pain first time around. I also remember waking up with wet hair. Wet because the blood and gore was washed out of my hair. I spent another week in hospital but this time I was slightly more sociable than before. I spent most of my time trying to convince the doctors that I was ok and that I was ready to go home, much to their amusement. I even made a friend, the lovely and positive ray of sunshine Zoe. She lived in the hospital bed opposite me. She made my time bearable and I will never forget her kindness or her friendship towards me.

Eventually I was allowed to go home and recovery was tough. I will talk about this in a future post.

In July 2013, I had a check-up appointment booked with my neurosurgeon.

I’ll be honest I was actually excited about this one. I was even imagining celebrations on being given the all clear.

And I was given the all clear, the tumour had been removed, no residue remained and it hadn’t returned. However…It turns out there was another brain tumour that hadn’t been picked up before in a different part of my brain. Seriously WTF? What are the chances? The thought of having to go through it all again made me sick to my stomach.

This time I was diagnosed with a falcine meningioma in the posterior falx in my brain. The falx is a thin layer of tissue between the two sides of the brain and posterior means that it is towards the back part of my brain.

Apparently it is rare to have multiple concurrent meningiomas occur simultaneously in different locations of the brain.*** In addition, meningiomas are more common between the ages of 40 and 70. Lucky me, not only did I have two brain tumours at the same time, I was also under 40. In short, this meant more tests. The short version of the results is that we don’t know why I had two brain tumours growing simultaneously.

At the moment, I’m undergoing the “wait and watch” approach for brain tumour number two. This means regular MRIs with dye…and well, waiting. I have my next appointment scheduled in the summer so I will keep you posted!

March marks brain tumour awareness in the UK. Both the Brain Tumour Charity and Brain Tumour Research are raising awareness and encouraging fundraising through the #WearItOut (3rd March)***and the #WearAHatDay (31st March)**** campaigns respectively. To find out how you can get involved please click on the links.

* https://www.thebraintumourcharity.org/

** https://meningiomauk.org/meningioma-facts/

***www.skullbaseinstitute.com/meningioma

****https://www.braintumourresearch.org/

Thank you to Craig & Karl for kindly letting me use their image “Brainz”, www.craigandkarl.com

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4 Comments

  1. Nina I had no idea ! What an ordeal you have been and still going through!You are so brave and I send you all the love in the world . I look forward to your next post with serious interest as to how everything goes for you .much love Amanda washbourn xxxx

  2. Thank you for sharing this post, Nina, truly. Beautifully written. so perfectly balanced with facts and your thoughts.
    I’m off to read your other posts and click on those important links you’ve shared here for brain tumour awareness.
    Massive love to you x x

  3. Thanks for this blog Nina. You are shedding light on a very important medical area, that is often not discussed. I remember waking up after an operation, when my neck had been broken – the pain! And the poor nurses, how I swore at them.

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