I mean, being told you have a brain tumour is one of the most horrible things that can happen to you. It didn’t help that I was slightly hungover after a celebratory evening, the sun was shining and basically, life seemed glorious right about then.
Friday in the new office with only a couple of people in and I had the good coffee on the go. I mean the freshly ground stuff that smells oh-so-nice and you save for special occasions or when you’re trying to sell your house.
Thanks for reading Claire’s Substack! Subscribe for free to receive new posts and support my work.
The doctor called and she just came out with it “you have a brain tumour”.
What do you do with that information?
“Don’t drive, don’t leave Bristol, stay by your phone.”
Freedom disappeared in nine words. My world shrunk so small with that sentence. It still hasn’t really opened up that much.
Photo by Kelly Sikkema on Unsplas
Photo by Kelly Sikkema on Unsplash
I held it together for the rest of the call as we discussed the next steps. These were her referring me to several different departments and prescribing me sleeping tablets.
Then the call ended. It didn’t take long for the reality to sink in. Dealing with extreme news is tough, I still don’t know what the best way is to cope with this is. But your world fractures, splinters into millions of pieces. Everything that you’ve known changes in the blink of an eye.
Thoughts are slippery and hard to grasp; people talk to you but nothing makes sense. Nothing but fog comes out of their mouth and you need to find your way through it.
Months later, I now know I went into shock. The nausea should’ve been a give away. Here’s a list of emotional shock symptoms and expect to go through most of these in about a minute:
- Denial
- Numbness
- Disassociation
- Panic
- Anger
- Breathlessness
- Headache
- Nausea
- Dizziness
- Lightheadedness
- Muscle tension
- Increased heart rate
- Tightness in the throat or chest
- Inability to speak or move
- Difficulty rationalizing, thinking, or planning
- Loss of interest in surroundings
- Inability to express emotion
It’s amazing how much of a physical impact shock has on you. I couldn’t breathe, I turned dizzy and didn’t recognise where I was for some time. Emotional shock happens when your brain reacts to a threat. When your brain can’t process the situation, it freezes to protect your body and mind. Can confirm this really does happen and there is nothing you can do at this moment but ride it out.
I burst into tears on the stairwell in the new office.
My colleagues were brilliant in sorting me out with tea and hugs. My husband picked me up and we walked across fields with the old dog, watching her enjoy the sun and her paws on the grass as we tried to work out what was going to happen to us.
Photo by Vitolda Klein on Unsplash
We talked and talked and planned together and rang people and talked more. No one knew what to say – what can you say? What’s the right reaction? Some people stepped up and others drifted away. Everyone reacts and copes with the news in their own way, and sometimes that means parting ways.
When you have a potential cancer diagnosis you should see a consultant within two weeks. A ‘two-week wait’ referral is a request from your General Practitioner (GP) to ask the hospital for an urgent appointment for you, because you have symptoms that might indicate that you have cancer.
In theory.
It took me, the GP and the GP’s secretary two weeks of daily calls with the hospital trust to get me an appointment with a neurosurgeon in a further two weeks’ time. A total waiting time of four weeks. The two-week wait seems to be an idea rather than the norm these days.
I found the right person to talk to, his secretary. I asked to be put on the cancellation list, she called me back a couple of hours later with a date and time. Someone had cancelled that day.
I booked it straight away and forwarded the official letter to the family. Things had started, they were now in motion.
Meanwhile, I had gone into crisis. Diazepam was my friend and the only way I could get through the day. I phoned the emergency doctor weekly at one point for help. And discovered a GP who after hearing me breakdown about the mess that had happened the last four weeks, mentioned that that had been an update regarding my scans.
He then refused to tell me what the update was, saying I should speak to the doctor who had ordered them. She wasn’t due in for another few days.
Even people in support and authoritative positions don’t know how to deal with things. I’ve learnt that now. We have nothing in place to help us cope with terrible news. I think we’ve been so exposed to awful things over the last few years that we’ve become desensitized to most things. Personal stuff, friends, family, that’s something else.
This is an old New York Times article but I think a lot of it still resonates today. A constant news cycle of violence and pandemic has taken its toll on the world. Ukraine, shootings, stabbings, and economic downturns are interspersed with cute cat videos and the latest TikTok dance craze as we doomscroll through our social media channels.
This interview with Jeff Hancock of the social media lab at Stanford University for Bazaar magazine provides a useful insight into why and how we react to news.
“We consume media like a river now. The fact is, this is the first time we have been reading the news, talking to friends or playing a game all on the same device, all probably within 10-20 minutes. This is a really new phenomenon for humans, but we also adapt. So, it’s not that there’s no effect. It could be that we’re being desensitised. It could be that we’re becoming more empathetic – it’s too soon to tell. But it certainly has completely changed the way we experience the world.”
And that is impacting our friends and family too. This isn’t making excuses, but learning how people respond to difficult news. Brain tumours are a lot, just the term can mean so much. It signals operations, bald heads, scars, and even death.
Messages with some loved ones have dried up to OK? every so often. This hurts, without a doubt. I guess I’m learning about what my loss will be; I’m not going to come out this the same person. It would be nice to have those relationships back. While others send daily deluges of reels and memes. I love it. They spark joy.
But I’ve trying to make sense of the brain tumour and what it currently means and will mean for me, for my marriage and for others around. There’s no answer, not yet, only existing day-to-day right now. And that’s a win.
Photo by benjamin lehman on Unsplash
Anyhow, after weeks of calls and waiting and diazepam, I got to meet my neurosurgeon for the first time.
And that will be my next post. Let me know what you think of this one.
Claire x