7 things I wish people knew about Brain Tumours

Every year on 1st October, we wear grey to raise awareness of the often invisible illness of brain tumours. People from across the UK come together to wear grey and show their support for people who are living with a brain tumour. Raising awareness of the signs and symptoms, how people can cope and also raising awareness of funds for the few brain cancer charities in the country is an issue that is close to my heart, having been diagnosed with a meningioma back in November 2019. This blog post discusses 7 things I wish people knew about brain tumours.

7 things I wish people knew about brain tumours

The rundown is as follows:

1. Benign isn’t fine.

Quite often people use the phrases ‘at least it isn’t cancer’ and ‘benign is fine’ to describe benign tumours. Yes, it is great news that something isn’t fast growing and spreading uncontrollably, however benign when it comes to brain tumours is far from fine. Benign tumours can also cause serious symptoms, blind you, cause speech problems, seizures and can also kill you. Grade 1 and grade 2 tumours can also turn malignant if not treated. It’s all a bit blurry when it comes to categorising brain tumours. I’ve learned quickly to take things very seriously and it’s better to describe benign ones as ‘low grade’ as they can also be as harmful as malignant ones.

I was recommended a really useful book called Brain Tumours – living low grade : The patient guide to living life with a slow growing brain tumour by Gideon Burrows.

2. I may look OK, but inside I’m not!

At risk of grumbling (but hey, it’s a blog, I can only say how I feel), even though I may look OK – give or take a dodgy eyeball, inside I am not. I have had what can be described as a permanent hangover over the last year and live day-to-day with symptoms such as a stabbing pain in my head, blurry vision, dry eyes and a whooshing tinnitus / high pressure feeling. Every night I am scared to go to sleep, because when I lie down, the pressure all goes to my head. Then there’s fatigue and anxiety. Some days are better, some days are worse, but they are a permanent reminder and something I have to deal with.

3. Meningiomas are ‘proper’ brain tumours.

A meningioma is a tumour that arises from the meninges. The meninges are the membranes that surround your brain and spinal cord. Even though they are on the ‘outside’ part of the brain, they are categorised as brain tumours because they can compress and squeeze the adjacent brain nerves and vessels. As meningiomas grow, they invade your brain space. Pesky blighters.

4. Finding support (outside of Dr Internet!) is possible.

When I was first diagnosed, the consultant told me to steer away from looking things up on Google. This as you know is impossible for a lot of people, and a lot of information is available. Some more reliable than others. However, your best bet (in my opinion), is to trust the information from your neurosurgeon – and also the other healthcare professionals on your team. Also brain tumour charities (such as Brainstrust, Brain Tumour Support and The Brain Tumour Charity) provide such an important service helping brain tumour patients and their carers.

5. Scanxiety is real.

I only learned of this word since my diagnosis. Seems as though if you have a tumour, you will most definitely experience scanxiety. As Crowded House would say, it’s only natural! When you have a brain tumour, it is likely that you will have regular scans and quite often for the rest of your life. Each scan brings with it the anxiety of being confined in the MRI scanner. Having your head in the head cage, the added complication of wearing a mask in coronavirus times (I cannot stress how claustrophobic this is!) and worries about having the cannula put in your arm and being injected with a special dye. One that makes you feel rubbish and you have to flush out with water each time.

Then, you often have a long wait until you get to speak with your consultant. Has the tumour grown? What will this mean? How will it affect treatment? It never seems to get any easier either. You can always go with the thought no news is good news, and if it was really bad they wouldn’t let you leave the hospital, but sometimes this isn’t always true. Emergency or no emergency, monitoring scans could produce good or bad results.

6. Brain surgery is petrifying.

I’ve recently been watching the brain surgery on Channel 4. I wondered whether I should at first, but then I realised that I watched every episode of One Born Every Minute before childbirth and I found that beneficial knowing what might happen in labour. So maybe it would make me more confident about going under the knife! However, brain surgery is so complex.

I still don’t know whether I will have to have an operation. Of course, they told me at first they were going to operate but then said it was too risky because of its location (greater risk of blindness, stroke, paralysis and death) so better to wait and monitor the tumour’s growth. My healthcare professionals have told me that early surgery may prevent me from going blind but also may cause me to go blind. Also, imagine preparing yourself for such a life-changing operation.

It’s something that I’ve definitely thought over and thought through but hoping that it won’t happen to me any time soon. The thought is petrifying. Especially as I’ve got a family / young daughter too!

7. Description tags are hard to take.

“Brave”, “warrior”, “inspirational”. These are some words that are used to describe those with a serious condition. Even though I appreciate why people say this, it’s not expected. . We have no choice but to cope with what life throws at us. Is that true bravery or is it just learning how to cope? I don’t see myself as a warrior. I didn’t choose to go into battle and I’m certainly not equipped to fight it.

As someone from one of my support groups put it, the phrase ‘winning the battle’ is misleading. If someone ‘loses the battle’ does that mean they haven’t fought hard enough? Of course not! Inspirational? I hope that my truths in describing life with a brain tumour go to help people suffering from one and also people who want to learn more. Either as a carer of someone else or to learn about how to spot a brain tumour or learn more about them.

Wear Grey. Choose Grey. Change Lives.

Being diagnosed with a brain tumour is a long and winding road. I know mine, even if operated on won’t be able to be completely removed and I know that it won’t shrink or get better by itself. So I just have to hope that symptoms are managed long term, threat of serious problems is spotted promptly and any treatment goes ok. I know that with the support of my family, friends and the wider brain tumour community, it’s about getting on with life and learning to live with it! 

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I hope this has been an interesting read. Do you or anyone you know suffer from a brain tumour? Have you learned anything interesting? Let us know (or just say hi) by commenting below or joining in the conversation on our Facebook, Twitter and Instagram pages.

Disclaimer: This post may contain affiliate links however all views and opinions are my own.

8 thoughts on “7 things I wish people knew about Brain Tumours”

  1. I love how you’ve described feeling of looking fine on the outside, scanxiety, surgery….so tired of the way people act like I shouldn’t feel awful because I look fine on the outside and it’s only an MRI etc…forgetting the fact it’s growing back…Love your blog and will be watching for more in the future 💕

  2. Fabulous read 😃 it’s like everything I wanted to say written down in front of me,my surgery is 3wks time and it’s a mixed bag of feelings to be honest but without surgery I’ll lose my sight 🤷🏻‍♀️ Thankyou and best wishes xx

  3. This was truly insightful. My auntie had a brain tumour, and it’s an area that I realised I was severely lacking understanding and am trying to improve my awareness. I totally get the scanxiety part. I have hydrocephalus, NF1 and Crohn’s. I’m always nervous about getting scan results in case anything has changed!

    Megan | https://meganelizabethlifestyle.com/

  4. “Oh, so you’ve had the all-clear then.” With some cancers, this might be a reasonable assumption for someone who has just successfully completed their treatment. It’s vanishingly unlikely however that initial recovery from a brain tumour means a patient can just forget about it and get on with their life.

    14 years on from diagnosis of a malignant tumour of the cerebellum (the rear, lower part of the brain) and an appallingly tough regime of treatment I still live from one review MRI scan to the next. I’ve learned to live with that; it’s only usually the morning of a scan when looking I start to get anxious.

    There’s so much support out there – I’ve found Brain Tumour Support a great help. Most of us are fellow travellers on the same journey; we’re all carrying the burden of that provisionality – that at any time, things might just change…

  5. I found your post to be really insightful. I’ll be honest and say I don’t know much about brain tumours, but after reading your post, I have so much more awareness of what you and others are going through. Thanks for putting this together for people like me and others. Good luck to you lovely. x

    1. I feel your pain, not only do I have a cluster of mengiomas I also had a brain aneurysm which was coiled back in 2018. My surgeon saved my life.these were all found incidently as my dad had an aneurysm, my gp said my stabbing headaches and double vision was anxiety.. So yeah I had a big fight on my hands. I’m right there with you in this uncertain scarey journey. I just keep going and try not let it consume my life. One thing I’ve noticed is now I have metal in my head is I have to wear an earing on my right ear to balance me out, I set off the security alarms in shops and my party piece is I can stick a magnet to my head…. Only kidding. But seriously though they can see the metal in my head at airport security. I wish you well on your journey I liked this read.

      1. Wow, very well written! I was diagnosed with a stage 1 benign meningioma. I had brain surgery 2 years ago, but the doctor couldn’t remove all of it due to its location. Scanxiety is a REAL thing and brain surgery is absolutely petrifying. I’ve felt really alone in my journey, so I am very thankful to find your website!

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