Long distance friends


In the weeks that followed my haemorrhage, ‘life’ if you could call it that, had become intolerable.

From waking, it would take me as long as an hour to get out of bed, vommitting innumerable times, and get myself downstairs. That was on the days I could be bothered.

I was sick of being sick. I was sick of being dizzy. I was sick of everything spinning. I was sick of being tired. I was sick of people trying to force me to eat. I had the most awful feeling in my my head. It wasn’t a pain so much, it was a feeling of fullness on my left side. It was that piece of shit constantly reminding me it was there and stripping pieces of me away, day by day. And what’s more I was terrified as the impending day of my surgery got closer and closer.

I could no longer drive. In fact I’d not driven now for a while, since that fateful day I’d gone to meet a friend at the local garden centre for coffee. I had stumbled and wobbled from my car, to the entrance. There was a guy looking at plants blocking my route, so I tried to navigate my way past him and wobbled, almost taking out a plant display. He looked at me in disgust and suggested I “Put more water in it.”

After that I was terrified in case I was ever reported to the police for drink driving, so I didn’t drive again.

Nowadays, whilst I’m not quite as wobbly, I carry a Brain Injury card from the amazing charity Headway.

As I counted down the days, I became more and more convinced that I wasn’t going to survive surgery. I mean, surgery was risky before the haemorrhage, and who knows what they would find once they were in there now.

The risks of surgery were endless:

  • Risk of temporary facial paralysis
  • Risk of permanent facial paralysis
  • Risk to other cranial nerves that could cause problems swallowing and double vision
  • Risk of stroke
  • Risk of haematoma
  • Hearing loss (100% guaranteed)
  • Risk of CSF leak
  • Risk of meningitis
  • Risk of death

This last one terrified me. Actually, it wasn’t that it bothered me so much, as death would have been a relief to how I felt physically at that time. Rather I felt guilty that I had put everyone around me through this ordeal. Neil would be left having to look after 3 teenagers. We were partners in crime… would he find someone else with the same crazy interests? One of my sons had always been very anxious, how would he cope without me being around?

I was aware that I would lose hearing and balance function on the tumour side, but that balance function was likely to compensate well with physio. But what if it didn’t? People have said that things like riding a bike became extremely difficult, if not impossible. I didn’t want to be a burden on everyone. What if I suffered a stroke and became completely unable to look after myself? All of this went through my mind. I was scared and exhausted.

Now I mentioned I have some pretty amazing friends in the military. During this time they contacted me and I offloaded everything onto them. I shouldn’t have, and I still feel bad that I did as their jobs are stressful enough without me adding to it. But I’m kind of glad they did. They are always able to put a different spin on any situation. Always able to find positives.

During my “woe is me” moment, I was angry and upset. Angry because after years of watching what I eat, making sure I exercise regularly and looking after myself, I found myself in this position. It wasn’t fair. Why had I bothered?

These guys told me that I should think again. I would be far worse off if I hadn’t done all of those things. I was in a much stronger position than many others. I couldn’t argue with that. They had a good point.

About surgery, we agreed that the worst part of all of this was the not knowing. Not knowing how I would feel after surgery, how I would be affected afterwards. And they knew I was a bit of a control freak, so the thought of quite literally putting my life in the hands of my surgeons was eating me up. They said I should let them get on with their job, it’s what they do. I should shift my focus to my recovery. This chat we had was a complete game changer for me. I binned the goodbye letters I’d written to my family, because that was not going to be an option. And instead of counting the days I had left to live (yes I even had a countdown timer on my phone to tell me!) I began to countdown the days until I get my life back.

Thankfully they would never see how much I cried that day.

Partly, they were tears of relief as the realisation dawned on me that I was still in control of me. When this shit was done with, it was me who would be in charge of getting the old me back, and not settling for this “new normal” that people spoke of.

These guys, the ‘Bastards’ as they refer to themselves collectively, made me think of my surgery as day 1. I would know exactly what I was dealing with, and being the control freak I am, I could get on working on my recovery.

I was hard pushed to find anything on the internet that gave me hope about recovery; it seemed many of those who recovered physically, had terrible facial palsy. Others suffered from fatigue. At that point it became my own personal mission to show others that it coud be done. I would recover. This piece of shit in my head wouldn’t stop me from doing anything I enjoyed. I would run again, I would cycle again, I would climb again, I would hike up mountains again.

I had been reading a book (well listening to an audio book as at this point I couldn’t see well enough to read) by a former US Navy Seal, David Goggins. I enjoyed his story of overcoming adversity because it reminded me so much of what the “Bastards” had told me. One quote in particular, I fall back on frequently. He said,

“Everybody comes to a point in their life when they want to quit. But it’s what you do at that moment that determines who you are.”

I have never quit anything in my life. And I wasn’t going to start now.

I will forever be thankful to those guys for being there and listening. My family were worried enough without me adding to it. It is far easier to tell your darkest fears to those you don’t have to interact with each day, and as they weren’t living this ordeal day in, day out, it was easier for them to give me straight up, logical advice and keep everything in perspective – often a very different one.

I’m currently working on my next writing project, How We Rise, but I need your support. You can find out more 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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