Me, My Brain & I – a new years update

It’s now been two months since the day I was told I had a brain tumour. It’s been a whirlwind two months to say the least, but I thought I’d write an update of how it’s all going! I’ve had a fair few appointments, and some unpleasant symptoms, but we’re working it out day by day.

An update

At the end of 2019, the ophthalmologist and the neurosurgeon were talking about the complex surgery that I would need to have. However, after further scans and analysis, it looks like I may have been granted a reprieve for a while. It is in a difficult location which means that the risks of surgery far outweigh the benefits right now. They do not know how quick it is growing, as they have nothing to compare it to at the moment. The radiologists plan to scan again in 6 months and go from there.

They will operate as soon as it (1) gets bigger and starts to cause serious issues (e.g. problems with my vision, seizures etc) (2) it compromises my optic nerve or (3) my eye sticks out more. I’ve been fortunate enough to have seen two neurosurgeons on my journey so far, the second of which has offered a greater understanding of the situation in more detail.

What’s going on in there?

I have learned much more about the tumour itself. The type is called a ‘Meningioma’ – these are tumours that start in the layers of tissue (meninges) that cover the brain and spinal cord. Most meningiomas are thankfully benign! It is the most common type of brain tumour to have. However, I have a rare type of meningioma as mine is ‘intraosseous’ which means rather than being a tissue growth, mine is in and on the bone. Also, where it is located is quite tricky and sensitive in terms of removing it. It is on my ‘sphenoid wing’ boney ridge behind my eye.

It is growing one way pushing the ‘lateral rectus muscle’ and making my eye protrude, and it is growing the other way into the area of my brain known as the anterior temporal lobe. If it irritates this, then it may cause seizures and things may change again but thankfully it hasn’t. There is pressure where it is growing, causing unusual headaches and pressure / tinnitus / sensitivity to noise. It is very close to my optic nerve, but thankfully at the moment it hasn’t been compromised. However, the proptosis (where my eye sticks out) does cause a bit of blurry vision and dry eyes at times too.

Making a scary time less daunting

As you can appreciate, it is a touch scary to find out you have something growing inside your head that shouldn’t be! The anxiety about how badly something is wrong, and what could go wrong with your health with it being there takes a while to get your head around (if you pardon the pun). Also the thought that I may well need such a serious operation in future is quite daunting. The charity BrainsTrust have been absolutely amazing from the word go. First of all, they sent me a ‘Brain Box’ through the post.

Being seen on the NHS is fantastic and great, but there is not much practical/emotional support. Sometimes I’m told to go and ‘google’ things, and sometimes I’m told not to. However as a human being, I’m naturally curious to understand everything that is going on, and also what may or may not be ahead.

What’s inside the box?

The Brain Box contained SO many useful bits of information.

Brain tumour patient guide

  • It explains the care you should be getting, as suggested by the latest NICE guidelines. The guide includes booklets for different stages of your journey – e.g. diagnosis, treatment, follow-up care. There are suggestions too of questions you should ask the healthcare professionals.

The Fatigue Toolkit

  • A handy resource to enable patients and caregivers living with a brain tumour to understand what is meant by fatigue and to self-manage brain cancer related fatigue.

How to have a difficult conversation guide

  • This does what it says on the tin. Lots of handy hints on how to have those awkward conversations!

A guide to who’s who in the clinical team

  • Neurosurgeons, Neurologists, Neuro-Oncologists, Ophthalmologists… it’s good to know exactly who’s who in terms of the team looking after you.

BrainsTrust Support Catalogue

  • This contains resources to help you feel more in control , resources to help you feel alone, practical resources you can pick up and resources to keep you informed.

My Brain Book

  • A folder including sheets you can mark down all the important information concerning your tumour in one place. Appointment Dates, Medication, Symptom Monitoring, recording what’s been said at consultations, scan details etc.

Books for children

  •  ‘Toby the Teapot’s Daddy has a Poorly Lid’ and ‘The Snaggle Tooth Splat’. Perfect for explaining to Little C what this funny bone is doing growing inside Mummy’s head.

The wealth of information contained in the Brain Box was amazing and I am so grateful to have received it. What astounded me as well, was the little extras they’d put in there too. A cup of tea each for me and my fiance. Some shower gel and lip balm for a little luxury for me. And for Little C some beautiful hand-knitted cuddly toys. She was so pleased to receive the elephant and teddy bears. What a kind thought.

Even more support

As well as the Brain Box, which to be honest has been a bit like a bible to me, Jodie, the BrainsTrust support worker for the West Midlands region has been a modern day angel. She has kept in contact with me, answering any questions that I have and even very kindly arranged for me to have a 2nd opinion of my case in London. Just knowing that she is there to answer any questions I have, no matter how big or small is brilliant. She answers questions with the perfect mix of professionalism and empathy and I am lucky to have her!

So what next?

The plan of action for me is for further appointments with the ophthalmologist to closely monitor my sight and also further consultations with the neurosurgeon, with plans for more scans within the next 6 months too. Regards the horrible symptoms, it’s down to me visiting my GP and I have also been advised to get a referral to the pain management clinic to see if they can help. Perhaps some more natural remedies may help me too? Who knows? I wish I knew how to get rid of this pressure feeling in my head though, sometimes it feels like I’m on an aeroplane!

I feel a bit more relief now that I know I won’t need surgery straight away, although that may change should symptoms worsen or it grows bigger therefore compromising my sight. It is a scary thing to know something is growing inside you that shouldn’t be, and has the potential to cause real damage. However, now that I’ve seen the scans and learned more about it, it’s less scary right now. Now, if I can just feel a bit more human again in the meantime, then I’ll be winning!

2020 is set to be a busy year, so even though this is part of my life now, it doesn’t define it. There are far more interesting things on the horizon. Our little girl starts school this year so we are ramping up for reception! Also the whole year is a blank page ready to fill with lots of happy memory making with my wonderful family and friends. We have got a wedding to plan and I also want to start writing more on my blog so there’s a lot to be getting on with. Fingers crossed the health behaves itself and the rest will follow.

A big thank you

As a thank you to BrainsTrust for being, well, actually really wonderful people, I have set up a JustGiving Page to help raise funds for them. It’s the least I can do to say a big thank you. BrainsTrust’s vision is that everyone with a brain tumour should feel less afraid, less alone and more in control. They provide invaluable support to patients and their families and are a definite worthy cause. If you can help, please do so where you can.

You can find my fundraising page at: https://www.justgiving.com/fundraising/emma-mosley-brainstrust

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