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.

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