Benign isn’t always fine (Pt 1)

My surgery had been planned for 12th May 2018, but in the early hours of one Saturday morning, about 3 weeks before my op, I was woken by the most horrendous headache.

In the weeks since I had started my gentamycin injections, I had been feeling progressively worse with each day that passed. My resting pulse, usually around 55bpm, was now a minimum of 108 at rest. My blood pressure was also high. I was completely exhausted. My heart must have thought I was running in a never ending endurance event.

I had also been suffering with sickness. In fact by this point, I was sick from the moment I woke and began to move, until the moment I went to bed. Sleep was my only respite from this nightmare.

I hated how I had deteriorated, and I hated just how much this impacted on everyone else. My husband Neil had to go to work, he was probably glad of the normality it provided. My mum, in her seventies, was my carer during the day as I could barely get out of the bed. My youngest Alex, would hear me being sick every morning when I woke. I hated this. I hated that I couldn’t protect him from seeing me like this. He would come and check on me each day before he left for school and see if I needed anything. He would bin the sick bags and even brought me tea and toast in bed, telling me that eating would help me feel a little better, you know, all those things you tell your children when they’re sick.

It would take every ounce of strength to just get out of bed. Now fortunately for me I have some friends in unusual places, including a bunch of Navy Seal trained special operators who work in combat search and rescue. They know a thing or two about mental strength, and whilst they had never been in my position, their training had taught them a great deal of resilience, and they passed whatever they thought would be useful onto me.

What I drew on at that time was to be patient with myself, and to break those seemingly impossible tasks, into much smaller, manageable ones. Just getting out of bed was one of those seemingly impossible tasks.

So, I would wake up and wait a couple of seconds for that wave of nausea. Then I would shuffle onto my side and grab the sick bag. Then I would be sick. When it settled a little and I had finished emptying what little stomach contents I had into the bag, I would slowly sit myself up. Then I would sit on the edge of the bed. At this point I would usually be sick again. Then I would try to stand and make my way to the bathroom… You get the idea.

To have become this from someone who was relatively active was so frustating and annoying. I hated this inept being that I had become. Totally reliant on others. Unable to work in my studio. There were days I just wanted it to end. I’m ashamed to say it, but there were days that I just didn’t want to wake up.

Andrea and Helen, the Skull Base nurses at Salford Royal were amazing. They liaised with my GP and arranged prescriptions for every anti sickness medication that I could possibly take. I had tablets, sub lingual, patches. You name it I had it. Sadly though, they didn’t seem to work.

Anyway, one particular morning I was woken with an unusually bad headache. I took painkillers and tried to go back to sleep. I woke the following morning feeling far sicker than normal. I don’t remember much about that day, apart from sitting in the house with sunglasses on.

My friend Sahra had popped round later that afternoon to help me complete a claim form for Personal Independence Payments, or PIP. We completed about two thirds of the form when I just felt so unwell. My headache was getting worse and so she left.

No sooner had she gone, and I was being violently and uncontrollably sick. I knew something really wasn’t right, but I didn’t want to go to my local hospital as I was being treated at Salford, Manchester.

I knew, being trained in emergency first aid, that if it was anyone else with my history I would have called an ambulance. As much as I didn’t want to go, Neil took me to the local hospital so he could ask for their advice.

After a 40 minute wait in A&E (yes, despite Neil explaining my condition to them, 40 minutes of sitting in reception with all the Saturday night casualties) with sunglasses on as I was now extremely photosensitive, I was seen by triage, who immediately realised that my left pupil was extremely dilated. I waited another 15-20 minutes whilst a side room with dimmable lighting was prepared for me.

From this point, the A&E staff were amazing. I was immediately given IV anti sickness medication and much needed pain relief. I’d been given oramorph originally, but this didn’t have any effect on it all. To finally be pain free was such a relief. I was then sent for a CT scan…

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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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