Helpline 07939 046 030

Lucy’s Story

28 March 2017

My husband suffers from Neurofibromatosis Type 2.

As a result, he is profoundly deaf, walks with a cane, had the lens replace in his right eye, and has had brain surgery twice in the space of a fortnight. In the case of the brain surgery, they went in once to remove a tumour, and once to drain the fluid that collected as a result of the first operation!

His legs have been rebuilt and strengthened with steel cables (they work similarly to the E string on a bass guitar) because his knees kept dislocating; and every so often he needs smaller tumours removed from his hands and face which means they steadily lose sensation as more and more nerves are removed.

In the past few months, he has received Botox to treat nerve damage in his face, and surgeries have been discussed to remove tumours and replace tendons in his hands. Sometimes, it feels like he's just in and out of hospital and that it will never end.

He's been through some hard times.

No more martial arts, no more guitar (or at least no more learning new music), no chance of driving…it goes on. When he was first diagnosed at 12 years old, he really went off the rails.

His mum suffered from Nf2 as well, and she sadly passed away about two and a half years ago. He has suffered from depression, anxiety, panic attacks, and seizures, both in the past, as well as much more recently. Sadly, he became addicted to drugs and smoked for over half his life.

"However, he is still one of the kindest, sweetest, most selfless men I have ever known. He's been receiving the amazing treatment Avastin, which is slowly starting to shrink the tumours in his brain and on his acoustic nerves. "

– Lucy

Our relationship can be hard at times, having practically been built on a foundation of him being ill and both of us having to compensate as a result, but I have never even considered walking away.

I love him, and I couldn't be without him, regardless of whether he was sick or healthy.