Stories of NF: Simon R.

My name is Simon, I am 27 years old and my NF2 journey started back in 2013, it was one of my darkest times.

It was a normal summer day in July 2013 and I had gone on a bike ride with my Auntie. I love cycling, the freedom of being outdoors in the fresh air. For some reason on this day I was having problems riding my bike, the track was narrow and I was finding it hard to keep the bike upright. I fell off it a couple of times, once landing in a bed of nettles. I started getting hot and sweaty and not feeling too good, I called it a day with the cycling and headed home.

My mum made me an appointment to see my GP. The GP couldn’t find anything in particular wrong, but had concerns about my balance, so asked my mum to take me to A & E to be checked over. While in A & E they took blood and urine samples but could not figure out what was going on; at one stage the doctor told my mum she thought I was taking drugs. My mum dismissed this straight away.

Finally, they said they wanted to do a CT scan, that was the start of my roller coaster ride. Within 20 minutes of having the scan the hospital were arranging for me to be transferred to Salford Royal Hospital and we were told the unbelievable news that I had a brain tumor.

Everything moved really fast, I was so scared. My mum was trying her best not to upset me but I knew things were not good and that I was really sick.

The next day at Salford Royal I had loads of tests, MRI scans, etc. I was really frightened at what was happening to me. In the afternoon we met with Prof King and his team and we were told I had two brain tumors (one on either side) sitting on my balance nerves and that he was almost 100% sure it was a condition called neurofibromatosis type 2. Both tumors were large and he would need to remove one of them as soon as possible or I would be in danger of losing my life. This was a ‪Friday afternoon, I was allowed to go home for the weekend and was told my surgery would take place first thing ‪Monday morning.

The weekend went so quickly, my mum & Auntie took me back early ‪Monday morning ready for the operation that would change my way of life forever.

I told my mum “please don’t let me die.”

I was in surgery for 10 hours. Fortunately, they managed to remove all of my tumor on my right side. The next couple of days were a bit blurry, I was scared to look at myself, my mum took pictures of me to see, and apart from the bandage round my head I looked normal. After a couple of days, I tried to walk up and down the ward a little bit, it was difficult to get my balance and I was stumbling quite a lot, but was determined I would do it so I could go home.

On Friday, just five days after surgery, I was discharged and it was so good to be outside in the fresh air.

While at home I started to get very depressed; I didn’t want to go outside, I didn’t want anyone knowing what was wrong with me, I started keeping myself to myself. I no longer felt safe on my own, found it hard working out where sounds were coming from and found even the simplest of tasks hard to do.

My mum arranged a little holiday for us so we could get away for a little while, on the morning we were supposed to go I woke up and felt strange, there was liquid dripping from my wound. My mum took me straight to A & E, within minutes of arriving there they had us in an ambulance and on-route back to Salford Royal Hospital. I had a CSF leak and needed to go back for more surgery. The wound had become infected, it had to be re-opened and cleaned, I had to have a lumbar drain fitted for over a week and I had to stay in bed and try to keep as still as I possibly could.

I was finally allowed back home but had to have a Mid Line fitted into my arm and over the next two weeks had to have the District Nurse visit twice daily to give me IV anti-biotics.

In 2014 I had to go back to the hospital for another MRI scan, hearing tests, balance tests, etc, it was then I got the devastating news that my remaining brain tumor had grown. It was like we had stepped back again.

I was told I could go onto a drug called Avastin, which is used to inhibit the growth of tumors by blocking their blood supply. At this stage I was willing to try anything because I knew if I had to have the other tumor removed I would become completely deaf and have real problems with my balance.

I started Avastin in May 2014 at The Christie Hospital in Manchester; at first it was every two weeks, then it went to every four weeks. The treatment was via IV and took around one hour to have. The treatment makes me very tired, I would come home and sleep the days away.

The treatments been working well for me, at one stage my tumor started to shrink, then it started growing again, every time I have to go for MRI scans I feel sick waiting to find out what’s happening this time.

After three years on treatment my veins finally gave up and I have had to have an internal port fitted, I was very scared of having the port fitted but when I look now I should have done it a long time ago because it makes my treatment less painful.

Nothing in my life is the same, I don’t ever go out on my own, lost all my confidence, don’t know how I would manage without my mum. My condition makes me so tired, I find it hard to concentrate on anything for more than a few minutes.
I have tried cycling again but it is so hard keeping my balance, I wish I could turn back the clock and have my old life back again.

Fighting all this I have done two charity events for the hospital I go to each month for treatment it’s just our way of giving back all the thanks for the constant care I will be having for the rest of my life as there isn’t a cure for what I have.