Q: when is a brain tumour benign? A: never

Angie over at Brain Tumour Warrior wrote a wonderful post about the recent Eastenders story line of Alfie’s brain tumour. I don’t watch TV so I haven’t seen the episode, but as stated on Angie’s post, Ian Beale makes the comment, ‘you could be worrying yourself sick, and it turns out to be benign.’

Oh dear.

Now, Angie’s post says it all and I highly recommend you read it. I just wanted to add my own thoughts.

To be fair, Ian’s comment is typical of the average person. When I was told that Adam’s brain tumour was benign, I sighed with relief. I knew nothing about brain tumours except that cancer is bad and benign isn’t so bad. You just get an operation to whip it out, and away you go. Of course it’s risky – because cutting your head open and exposing your brain to the world generally is. But on the whole, its fine, right?

This is where Ian Beale and I were seriously mistaken

Here’s a few questions: what’s worse? Parkinsons or motor neuron disease? A stroke or dementia? Lung cancer or emphysema? Cancerous brain tumour or a benign brain tumour?

See what I mean? It’s all subjective, there is no comparison. All illnesses are horrible. They all have their own symptoms and side effects, and none is ‘better’ or ‘worse’ than the other.

Cancerous brain tumours grow quickly and invade the brain. Benign brain tumours, on the other hand, grow slowly and do not invade. The downside of this though is that they literally push the brain aside as they grow.

The dictionary definitions of benign are ‘gentle and kind’ or ‘(of a disease) not harmful in effect.’ So in theory benign tumours sound ‘fine’ but as Adam’s neurosurgeon told us, if it hadn’t been diagnosed it would have grown to the point where it killed him. Yes, they kill. Just like cancerous ones do.

It didn’t, which is good obviously. But he has lost his job, his mobility, his driving license, his independence. He has chronic pain and can barely walk 20 metres before having to stop and rest. He has weakness in his right side, and poor spacial awareness. He suffers from fatigue, depression and anxiety attacks. The relationship between him and I, although it grew stronger in the interim, is now permanently damaged. His whole life is completely different to what it was.

Gentle and kind? Not harmful?

It’s time the word ‘benign’ was dropped from tumour references altogether. Benign isn’t ‘fine’. It’s still an invasive mass in your body – when can that ever be ‘fine’?! Especially when its in your head! And this is something that more people need to be aware of. If you, or someone you know has a benign tumour, you need to know that this isn’t a reprieve. Yes, you don’t have cancer and that’s great, but you are facing a battle regardless. Adam and I learned the hard way. Forewarned is forearmed.

Let’s hope that Eastenders makes Alfie’s tumour benign, but that it makes his situation realistic, and that he isn’t dancing around Albert Square in two months time in perfect health. Television shows have the perfect opportunity to raise awareness of medical issues and show people just how illnesses can affect sufferers and the people around them. I suspect, as always, that the point is to create drama not to raise awareness, but it would be good if Ian’s comment could be put into context.

And the more people who know this, the better for us all.

Have you had experience of a benign brain tumour? Any thoughts to add?

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