It was the last week of July. I had now had all the scans and had almost forgotten about them. Not concerned at all. Now I was not in employment, but also not looking at a six week  course of radiotherapy, I decided to allow myself to have some time, to look for a job but also settle my mind after all. The stress the year had provided me already. Then on the 26^th July I got a phone call. 

It was the doctor from the NF1 clinic, she had looked at my spinal scan and whilst everything was ok with my spine, everything was not ok. There was a mass. A lump. A something. It was by my kidney and spleen. 

I was shocked, confused, scared. Lots of feelings. Lots of thoughts. She couldn’t give me a lot of information, well she couldn’t give me any  information because at that stage that’s all they knew. She had put in an urgent referral to meet with an endocrinologist. I’d never heard of an endocrinologist. It was all just so confusing. Even worse there was no one who seemed able to tell me what if anything was going on. All I was told, was not to exercise or do anything to elevate my heart rate. I was asked if I ever got a very fast heart rate or if I had high blood pressure, or if I ever get dizzy spells. At the time,  I said that I didn’t think so, that I felt finem, although on reflection this was not entirely true.  But at the time, I was just in a bit of shock, confusion and the complete unknown. 

It all felt so weird, I was not sure what that could be about. I had, as I took the call just finidhed a session at the gym. It had been my sanity for the time I was not working, id go several times a week. So this came as  a bit of a blow. 

The week following this though, was my birthday and my partner and I had booked a week away in our caravan to visit my mum by the sea. I tried to push all the fears to the back of my mind and best as I could, enjoy  our little get away. 

Before we got ready to pack up and go however I went straight over to doctor google again!

There was two things it could be and this was based on the rough placement that was indicated to me by the NF1  teamAdrenal Cancer, or what was much more likely, a Pheochromocytoma. From my google detective work, Pheo’sare fairly common in people with NF1, easy to treat and most of the time harmless. Everything online did suggest that tachycardia otherwise known as fast heart rate. Something on reflection I had been dealing with for a while, not constantly but sometimes, for no particular reason my heart would go really fast and hard for short bursts.  Pheo’s occur in around 10% of people with NF1 so there was a fair bit of literature out there to familiarise myself with what this could mean. To be honest at this point I didn’t even look at the information on Adrenal Cancer, just not even considering it a n option. 

But I followed the advice over my birthday week, resting when my heart rate got a little faster and reading up on Pheo’s. The treatment plan for people with a Pheo is always surgery, more often this is keyhole surgery and one is sent home the following day after. A successful surgery. Nerve racking as this idea was I was feeling fairly ok, and was trying to mentally prepare myself for this. I mean, what else could it be? 

Up to this point if I had learned anything it is that NF1 is an unpredictable and sometimes scary condition to live with. Despite (indirectly)  NF1 being responsible for my sight loss age 15 I it hadn’t felt as though it had played much of a role in my life until this year. But that’s not surprising. Hormone fluctuations can impact the speed that the tumour growth happens in NF1. In your early to mid twenties, when a woman is, typically most fertile, those living with NF1 can find that they develop many more of the small bumps so timing wise, this all made sense. 

Anyway, the referral from the endocrine team cane in requesting I had another MRI scan prior to my appointment with the endocrine doctor on 12^th September. 

This MRI scan was unlike any other I have had before. In my other MRI scans, I have always been told to stay as still as possible and the headphones they give you when you are being scanned play barely distinguishable tinny sounding music.

 This was a bit of a strange experience, firstly I had to wear a large belt over my abdomen it was fairly heavy,  but not uncomfortable by any means, my canula was then attached to a machine that was beside the scanner, I was told that halfway through the scan a voice would deliver some breathing instructions through my headphones   and  so, I lay back and was  moved into the scanner.

As the nurse said, halfway through the scan a robot voice came over the headphones 

“please hold your breath.”

Then shortly after the voice spoke again

“continue breathing normally”

This happened several times, and between each breathing exercise, the bed that you lie on in the scanner, moved back and forth. This was weird, as I mentioned normally in scanners im totally still. Then, the radiologist spoke to me over the headphones that she was going to remotely put a contrast dye  through my canula. Once that was put through, she said we would resume th scan that I would have a few more breathing exercises and then I would be done.

Soon after, I was free to go. Despite MRIs being quite traumatic for me, and having had very bad experiences previously, I did it, again, another scan. I just needed to wait for the results now. Another scan, another tense wait. I’ve since encountered the term scanxiety, that worry between scan and results is agonising. I so wish that we could know what we were facing on the day of a scan, but alas that is not often how things work.