Benign is not Ok

This summer marks 9 years since I was diagnosed with a brain tumour.

It has been a part of me for almost 1/3 of my life.

Of course over the years a lot of people have had a lot of things to say about my brain invader.

The funniest being my husband’s speech on our wedding day, where he explained how we started dating not long after I had surgery, and that he felt that me having part of my brain removed was the reason I asked him on a date!

The less funny being the times that people would tell me that the tumour was there because “I had upset the lord” or because I was “being punished” for something I did in a previous life.
Then those that would listen to me as I explained that a Vestibular Schwannoma/Acoustic Neuroma is classed as a benign tumour. As soon as I utter the word benign, their faces would change from pity to relief.

“Oh. Benign. That’s ok then. Thank goodness”

No actually. Benign isn’t fine. Benign and “non cancerous” are not the same

A benign tumour is still Life changing. All benign means is it won’t Metastasize to other parts of my body. It won’t bully its way in to other organs (you know, other than the brain it is already invading!)
Despite me being 7 years post op and technically “in remission” I still have a tiny part of tumour in my head. A part that cannot be removed. It could be blasted with Gamma Knife, and potentially chemo, but this would be life extending, not life saving.

Inoperable. Untreatable. Constant.

15 hours in an operating theatre. 7 months off work to recover. 2 years of constant pain. A 5″ scar and a fractured skull that is now held together with pins and plates.  Learning to walk again. Permanent damage to my facial nerves and life lasting Neuralgia, a total loss of hearing on my left side. Learning to adapt to the hearing loss and the changes in balance. All a result of treatment for my benign tumour

But of course Benign is ok.

I am so thankful that the last 7 years my tumour has not grown again. That every year that passes is another year spent with my wonderful husband and children.
But then every twitch. Every attack of facial palsy. Every time I lose my vision in one eye, or have a 3 week long headache, or my scar becomes painful. Every time anything like that happens I watch the panic grow behind my husband’s eyes. I see him deflated and worried. The unspoken question

“Has it grown again”

Hanging over us like a new diagnosis. A terminal diagnosis.

Please tell me again how benign is “fine”

For now we live our lives. Not in fear, but somewhat in hope. The hope that we will grow old together. That we will watch our children become parents and live out our days reading Sunday papers and trawling round antiques fairs. (Ok maybe not quite that sedentary)

For now we live our lives.

Tomorrow I may not have that luxury.

But benign is ok.

17 thoughts on “Benign is not Ok

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  1. Well this was a tough read. I had no idea about this aspect of your life. That’s quite an insensitive thing for people to say to you about a benign tumour. I guess it’s well meant, but understandably comes across badly. The stress you clearly feel comes across in the post.

    Liked by 1 person

    1. Hey! Thank you. Yes there are days where I’m definitely consumed by the what if’s and the is this it moments. The love and support people have shown since writing this post has gone a long way to helping me cope better. Thank you for taking the time to pop over x


  2. I think there is a lot of awareness to be raised about benign tumours, at the end of the day it is where it shouldn’t be, benign or not. This is beautifully written and explains it so well. Oh and to the people who said it was your fault, it’s a good thing they are not in a room with me. Gah! Hugs to you, Briony xx

    Liked by 1 person

    1. Briony, thank you so much for your kind words. Sadly there will always be people who need to find blame/place reason on everything. They never stayed in the room with me for long after spouting such nonsense!

      Yes! You get it! It’s a growth that shouldn’t be there! Regardless of its title/name it is an unwelcome invader.

      Thank you again for popping by and for the hugs. Xxx


  3. Oh Zoe! First of all I had no idea that you’d been through all this? I too thought that benign was the “good one” and really didn’t understand it at all until I read this. Excellent post that will really stick with me! Sending love and hugs xx

    Liked by 1 person

    1. I thought that too once upon a time. It’s strange how some things you never really learn about until it happens to you.

      I’m not amazing. Just human, but thank you xxx


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