The second MRI didn’t show much more than the previous one. Although they were able to confirm the ONG had no changes since 2014. Despite this, at a slight loss of what to do I think, my GP sent me to meet with a neuro oncologist to discuss a potential treatment plan. 

The potential of radiotherapy was given to me, a 6 week course of daily radiotherapy. 

However, the oncologist wanted me to meet with a specialist team in London who care for people with NF1 before I started any treatment. I was beyond overwhelmed with all of this, so many appointments and meetings with so many doctors. It’s a very emotionally complex, and exhausting experience.  

I was interested to gain the advice from a NF1  specialist, I have to say. I was curious to have a dedicated team to support me.

It wouldn’t be long, and the referral cane through. Me, my partner and my mum all trekked to London to meet with the specialist NF1 team. 

The hospital was so big, the biggest hospital I had ever seen! In the lead up to the appointment I had done research on the team id be meeting with. I roughly knew what to expect butt still felt huge apprehension as we took the lift up and followed the corridor what felt like endlessly until we reached the ward. 

The appointment was just a lot of tests, questions and a detailed background so they could gather all the medical  history they needed. The team rejected the idea of radiotherapy. They felt that for the OPG it would actually bemore problematic because the risk of future malignancy is significantly higher when you have NF1.  I was told the new thing at the back of my brain was likely another small glioma starting to grow and this too would not require any treatment at this stage. The plan at this stage was to just keep an eye on it with regular scans and address any changes as  they appear. 

So, radiotherapy was off the table. What a relive!  When we were ready to leave and id had all my bloods taken. The doctor who had seen me that day said she would be putting in a request for a full head, neck and spine scan. Spinal issues are not uncommon with people with NF1 and as my last scan was in around 2013 I needed an up to date one. Scans would then be done annually with the clinic to ensure there were no issues. I was given contact information for the nurses to make sure that I could directly get in contact should I need to.  I left that appointment feeling so positive and as though, eventually and qith time, if I continued to get care like this, I may be able to rebuild my trust in doctors. 

I had barely even left the hospital when I got a call to say that my MRI would be the following week, the first week of July.  Me, my partner and my mum were so impressed at the speed and efficiency. Who knew that all of this would shake my whole life and pretty soon, everything would change forever.