Brain Fog Blog

I’ve struggled to write this one. I’ve just finished my radiotherapy treatment (which I will write about eventually) and its left me at a bit of a loose end. Trying to write this has forced me to reflect on what was a horrible and uncertain time. It’s still helpful to me, but it’s taken longer than I’d have liked.

So, to pick this up where I left off, kind of…

Finding out I had an “abnormality” in my brain opened a can of worms, woes and worries. But what made it much worse was the journey to getting my next scan and the follow-up checks I needed.

In the weeks following my initial MRI (in the time I thought I was healthy) Lauren and I decided that we weren’t getting the value out of private healthcare.

In all honestly, we’d probably used it 2-3 times for minor things over two years. And since signing up to this service was a taxable benefit, we didn’t feel we were reaping its full value.

We agreed that it wasn’t worth it and since we were both “young and healthy” it wasn’t worth the money… famous last words.

Flashforward some time later to me being told I need to come back as soon as possible to get tests in the private hospital.

So much went through my head at this moment but “f*ck” was the thought when I remembered that we’d cancelled the private healthcare.

Not knowing what could be wrong with you is one thing but being unsure how to get the treatment you need as quickly as possible makes it much worse.

The next day I was told by Bupa that it would take at least one month to get signed back up into the service. This was time I didn’t have. No one in their right mind would want to wait, especially when you’re not sure if what you have could be malignant or benign? Could it be cancerous? What if it’s really bad?

Since private was off the cards, in the short-term at least, going through the NHS route was the only option.

I want to make it clear at this point that my blog is about my journey through this whole thing. With my Dad and my own health I’ve seen the best and the worst parts of the NHS. I will be honest in my writing about what I’ve experienced.

After this I called my GP. Anyone who lives in the UK will know how insanely hard it is to even speak to a GP right now.

I got through to reception and explained my situation and was asked to send the neurologist’s recommendation over.

I was assured that my GP would handle this. I stressed this was time sensitive, and that I’d been told I need to see another neurologist, and get a second MRI, immediately.

A few days later my GP rang me to tell me I had an appointment at nearby hospital in Hemel Hempstead where they will take over my case.

This appointment wasn’t going to be for another two weeks though. I was extremely anxious about what this could be and how I could possibly wait patiently.

Then a few days later my Dad passed away.

All of this went to the back of my mind. I knew I had my appointment date so that gave some assurance, but everything with my own health didn’t really matter to me at that point.

The time spent after my Dad’s passing was with my family – just being there for each other in what was the worst time.

Fast forward to around two weeks later Lauren and I went to the appointment.

I had a tonne of worries about what this could be, particularly in wake of my Dad and his own cancer.

Part of me feared it was cancerous. I worried I might get bad news at the appointment.

I wished I could have told my Mum, but I also didn’t know how to bring this up with everything that was going on. It all felt like some kind of sick joke.

I remember trying to remain calm at the time knowing that “at least today will be progress” and “this is a step in the right direction”.

As soon as we got in to see the Doctor, he read my notes.  Within less than two minutes of getting into his office I was shot down when I was told that my GP had referred me to the wrong hospital and most specifically the wrong department.

I had been sent to Ear, Nose and Throat (ENT) – I was told that I should have been sent straight away to the National Hospital for Neurology and Neurosurgery (NHNN).

To say I was angry is an understatement. I don’t think I’ve ever been so enraged in my entire life. How is it possible that my own Doctor – who was told where I should be referred to – managed to send me to the wrong place.

The ENT Doctor then sent an email to my GP and we were advised to go straight back to Watford.

What followed was laborious call with my GP’s receptionist and being told that they were doing “everything they can”.

After not being allowed again to speak to my GP, I was told that my case had been sent on to the NHNN.

What a joke. I’d lost my patience.  I’d just seen my Dad slip through the cracks of the healthcare system. He was told that he was all clear of cancer in January. That was wrong. He actually had stage 4 melanoma, which they somehow missed! Then he died four months later.

Now here I was not even able to trust a doctor to do his job. To say my faith in the NHS was at an all time low was an understatement.

…

On top of all this I had not yet told my Mum, and most of my family, about any of this. The shit show with the wrong referral made me realise that I had to let them know what was going on.

The same day I went back to Corby and let my Mum know about everything. This was not easy.  Aside from worrying the hell out of my Mum, I promised to not keep something that big from her again.

Days went by and I heard nothing from the hospital. I continued to call my GP and got nothing back.

As a family, we were ready to fork out the money just to get the tests done privately.

Then about a week or so later I heard from the NHNN. A week after that I had my second MRI, with contrast.  This is where they inject some kind of dye/liquid into your body. It allows for the tumour to be seen better in the scan.

Another week after that my results came through and I then had a video call appointment with the lead consultant.

Looking back at this several months later, I think I was honestly at my wits end. I had lost hope and generally didn’t have a good feeling about the outcome of the scan.

The video call was very to the point. The consultant was apologetic to the hoops we’d had to jump through to get there and was very empathetic to my situation.

He confirmed there was something in my brain and that it could be a tumour. But that it could not be confirmed without going in my head to find out.

At the time I don’t remember being too shocked that he said tumour. When I was told there could be something in my brain, this is what I worried it could be.

However, there was no way of knowing how bad it could be without going in.

I was quickly given three options:

1. Do nothing for now. Have regular scans every six months or so to see if it grows or changes.
   
   
2. Go in for a biopsy where they’ll take a small piece of it out to diagnose what it is.
   
   
3. Operate, take as much of it as they can out. Then analyse what is removed and diagnose from there.

Option 1 was a complete no go for me. There was no chance that I’d wait around to see what it could do.

I was torn slightly between 2 and 3 before I was told if I did the biopsy then I could not do the surgery after as it would be too much trauma on my brain.

Within about a minute I had already decided that I was going to do the surgery. I made that clear to the consultant, and that was that. They said they would reach out in the coming days for pre-op information.

Looking back, I don’ t think at the time I was properly able to comprehend what was happening.

What seemed like long-Covid in January had unravelled into me consenting to undergo brain surgery.

When I was wrongfully referred to the ENT I probably should have realised it was the wrong department. My mind, of course, was elsewhere at that time.

That being said, I really do think its appalling that my GP didn’t send me to the right place. Adding on everything with my Dad, and how we were mis-diagnosed.

I believe its the lack of accountability or apology that still frustrates me about both situations. I appreciate that the NHS does work in some ways. My experience so far with my radiotherapy treatment has been extraordinary.

But it’s clear that it is failing so many people. I just wonder how many deaths could have been avoided had they got the care they needed.