I have a condition called NF2-related schwannomatosis.

NF2 causes tumours to grow on your nerves. (This is the most basic way to describe it)

Most people with NF2 have Bilateral Vestibular Schwannomas.

I have Bilateral VS.

Now I'm lucky in a way, because I've known since my teens I had this condition. So have had 1 or 2 MRI scans every year to keep a close eye on this condition.

In 2020 (with no warning) they told me it was time to have my right side removed. At the time a new (ish) drug Avastin was being used and I instead insisted I be put on this drug. I had to go through egg collection as the drug can cause infertility and then started my Avastin journey.

I have always been fairly sensitive (drug wise) and I personally had endless side effects. The worst being my vocal cords were affected. I started having voice trouble in 2021 and eventually the Dr's believed me that it was the Avastin. Its taken me until last year to feel more confident in my voice and for people to fully understand me again.

I still stand by the fact the drug was the correct choice. Even though my voice will never be the same. And I'll always have that struggle.

In January I started having strange facial pains, first quite mild, and then increased and became unbearable, I would without warning get a horrid electric shock through my face, sometimes bad enough to make me sob. After some back and forth it was thought possibly that I had a condition Trigeminal neuralgia, for those of you that have been suffering for any longer then 1 month my heart goes out to you. It is the most unbearable pain nicknamed (suicide pain) and I can fully see why. But I still had no clue why this was happening.

Now to today, I switched NF2 teams recently (for reasons I won't divulge on here) and met my new Cambridge Team in August. Wow, I was blown away by the organisation and how prepared they were (given it was a last minute appt.

After being fobbed off and fighting for years, I finally felt heard.

If I needed surgery I wanted the surgery I wanted not the surgery being pushed on me.

I met my new surgeon and he asked me to give a summary of what was going on, he went onto explain that likely my larger tumour on my right was pushing on a nerve and causing the facial pain.

He told me we could do the surgery I had wanted and remove some of the tumour to hopefully alleviate the pressure on the nerve and also would mean the tumour was smaller and not as close to the brain stem.

I couldn't believe it, I went in ready to fight, I'd come on my own and knew I'd have to be tough, and here was someone listening and answering all my questions effortlessly.

Although no official date it will likely be November my big brain surgery ,to say I'm terrified is an understatement, but I do feel very positive. I'll be documenting every step and showing the good bad and ugly.