The day I got my life back

Apologies for the lack of photos on these next few posts!

The day before my surgery, I had an appointment at my local hospital to discuss the results of previous x-rays and CT scans. They had shown lymphodenopathy (enlarged lymph nodes) in my lungs, and whilst they thought it was unlikely, they informed us that they needed to rule out lymphoma. I’d not even dealt with the brain tumour, and the next battle was already being lined up.

They had already notified my team at Salford of their concerns, and so a week earlier, I was called back to see Joe Sebastian, my anaesthetist, who was concerned as to whether or not I would be fit enough for surgery.

At that appointment, bloods were taken, my bp was high and had my pulse not momentarily dropped below 100 bpm, they would have requested an ECG. Thankfully, I was able to convince Joe that I was as well as I could be, and he was happy to go ahead. I went away worried sick that the slightest change to my overall health could change everything, and I just wanted this ordeal over with.

12th May 2018. The alarm went off at 5am. At no point over the previous few weeks had I struggled to sleep as I was so utterly exhausted.

I woke, went through the whole nausea vomitting routine and got up. I felt surprisingly calm. It was as though I had reached some new level of acceptance that it really was out of my hands, and like you let a pilot fly you to your holiday destination, I had to just trust these guys to do their job and get me to my destination.

I tried to drink some water, as I was now nil by mouth, and could only have fluids until 6am.

A bit like waiting to have a baby, my bags had been packed and ready to go for the last couple of weeks. The outcome of this trip was unknown territory though.

I popped to see my children who were still sleeping before we left; it was at this point the fear kicked in. What would I look like next time I saw them? What would they sound like through one ear? Would I ever see them again? I fought back the tears for Neil’s sake, as his day would be long enough without me giving him more to worry about.

Due to brainstem compression, my usually neat handwriting was now barely legible.

We arrived at the hospital in good time and made our way to the admissions department. There were a couple of others also waiting to have surgery that day. I listened in to see what they were having done. I can’t remember now what their procedures were, but I remember wishing I was in their shoes.

I was given a gown, dressing gown, the oh so sexy compression socks and wait for it, paper knickers.

Blood pressure, pulse and temperature were taken, along with urine tests, pregnancy test (thankfully no surprises there!) , bloods were taken and cross-matched in case I should need a transfusion. The shit just got real. I messaged a few close friends, including my Navy buddies, and thanked them for their support. If I didn’t come out of this, I wanted them to at least know how grateful I was.

It was a comfort when my team, first the anaesthetist, Joe Sebastion and then Scott Rutherford and Simon Lloyd, neuro surgeon and ENT, came to see me.

Joe was happy with my obs, Scott went over the procedure, explaining to Neil that he would call as soon as I was out of theatre, and that he shouldn’t worry if it was 12 hours or more, and Simon began to go over the risks of surgery again, but I think the look on my face was enough for him and he said, “You really don’t want me to read through this again do you?” to which I replied, “Just show me where to sign and don’t mess up my face.”

With my barely legible scribble on the consent form, they went off to finish preparing the theatre.

They assured me I wouldn’t have to wait long, but if felt like a lifetime. My nerves were shot, I just wanted this over with. I gave Neil my phone to look after, along with my wedding and engagement rings.

Suddenly, it was beginning to feel very real and very scary. I desperately tried to calm myself, scared that if my blood pressure went any higher they might cancel. Whilst I sat there waiting, I cried. Little did I know it would be the last time I cried properly…

It wasn’t too much longer before a hospital porter came along with the trolley for me. As I got on and began to be wheeled away to theatre, Neil said “I love you”, and I knew that was the last time I’d hear him through my left ear.

Thankfully, the porter was chatty. It was probably somewhere in the region of a 10 minute ride to the theatre, along quiet corridors that almost looked disused. We talked about hobbies, and holidays. I told him I loved the mountains and I couldn’t wait until I could get up them again. We chatted about climbing, and the Alps and then the lift door opened and it was just a short distance to the theatre.

The theatre door looked more like an industrial fridge door, heavy and substantial. It was like entering an airlock on a submarine, or space shuttle!

As I was hooked up to various heart and blood pressure monitors, it was almost a relief to just be getting on with it. As the monitors began to beep, Jo inserted a canula into the back of my hand, and his assistant, another lovely lady, reassured me and gave me oxygen.

I felt the cold liquid snaking up my arm as the anaesthetic was administered. My eyes felt heavy and within seconds I was asleep…

I woke, and for a split second it felt like I’d gone into fight or flight until I realised where I was. I was almost immediately aware of 3 recovery nurses; one was at my side reassuring me that it was all over. I didn’t know what time it was. Just then, Scott came in to check on me. He told me that the surgery had only taken around 8 hours, which was far quicker than any of them had expected, given the extent of the haemorrhage I’d had. He told me it had gone really well, and they were really pleased they were able to remove 100% of the tumour.

It was only at this point did I feel utter relief. Preserving my facial nerve had been the priority, and I had kind of accepted that I would be left with a sliver of tumour in order to achieve this.

Then he told me, “You have a grade 3 facial palsy, but we’re hopeful it will improve over the coming weeks as your facial nerve was fully functioning when we closed up.” At this point I was still overwhelmed that they had removed it all. I can only describe it as an adrenaline rush. An overwhelming relief that it was finally over.

Little did I realise that this was just the beginning.

I couldn’t see and asked her to pass my glasses. She put them on, but I still couldn’t see. It was like I was looking through thick fog. So, I asked if she could clean them. “They are clean” she replied.

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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