Benign isn’t always fine (Pt 2)

My CT results came back at about 1am and the consultant came into our side room with a worrying sense of urgency.

“You have a bleed in your brain, so we’re blue lighting you to Walton” she announced. I really don’t know what I was expecting her to say, but it certainly wasn’t that.

I couldn’t speak properly as I was still in some pain and nothing seemed to make sense, and so I begged Neil to tell her that I didn’t want to go to Walton as that’s not where I’m being treated.

He was just as exhausted as I was by this point, but tried to make our case to the consultant, who wasn’t budging from her decision. She’d already spoken to Walton, the nearest neuro centre, and as it was life threatening that is where I would be going, just as soon as I’d stabilised.

And so, in the early hours of Sunday morning I was wheeled onto the waiting ambulance and we headed over to Liverpool.

When we arrived, we were taken straight to a ward full of mostly sleeping patients. I remember one elderly lady snoring rather loudly. It’s funny the things that stick with you!

A lovely nurse came over and took my details. I was given the rather fetching white compression stockings and colour coded fall risk socks.

On my way back from the bathroom, one of the patients asked if I would check under her bed as there was someone hiding under there. I think by that point I’d made my mind up that I wasn’t staying.

My team at Salford had reassured me that despite the risks associated with my surgery, they would do everything within their power to preserve my facial nerve function. The consultant I saw at Walton that morning, didn’t fill me with the same confidence. I was given a high dose of steroids to try to control the bleed and any swelling, and told that as it was a matter of life and death, they needed to remove the tumour. Risks would be discussed when I signed my consent form.

Neil, thankfully, was of the same opinion as me, and snuck off to try calling Salford. It was like we were plotting the great escape and I wasn’t going to sign any consent form; I kept the nurse talking as much as I could (I really didn’t feel like talking, I just wanted to sleep) and he made calls and sent emails.

Within about 20 minutes, the consultant returned, and rather abruptly announced that Salford had requested that I be immediately transferred to their care. Result!

Neil once again collected my belongings, and the nurses made sure I was still stable enough to be moved whilst we waited for another ambulance.

I was now under strict instructions that I shouldn’t lift my head any more than 30 degrees from my bed.

Thankfully, it wasn’t long until the transport arrived along with three paramedics. I was slid off my bed, lying completely flat, onto the trolley, and as soon as the paperwork was all signed off, we hit the motorway once again.

When we got to Salford, some 30 minutes later, we were greeted at the door by the on-call neurologist; I’m pretty sure his name was Alex. He said I could thank him for getting me out of Walton; we laughed – it really did sound like the great escape! He reassured me that I would be well looked after there, my pain relief would be managed and I would be admitted for close observation, that I could stay as long as I felt I needed to be there, and that I shouldn’t worry. The relief was palpable.

Whilst I have no complaints about my treatment at Walton, the fact that it was thought ok for me to wait from February until June (despite daily phone calls chasing the referral paperwork which apparently hadn’t been sent/received) just to have an initial appointment with the consultant, didn’t really fill me with confidence. We’d made our decision to move my care to Salford Royal, and I can honestly say it was the best thing we ever did.

The steroids seemed to do the trick. The bleed stopped and after a chaotic weekend, I went home a couple of days later, and advised that the best course of action would be to sit tight for the next two and half weeks to allow things to settle, inflammation to reduce and for me to get some strength back ready for my surgery.

And so began the longest 2 and a half weeks of my life…

I’m currently trying to get more writing projects off the ground, so if you enjoy what you’ve read so far, for just the cost of a coffee, you can support me here.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

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