“What’s it like, having a brain tumour?”

Asked everyone, secretly.

I’m willing to bet that’s a question you’d like to ask but there’s no short and easy answer. Just look at the length of this post.

When my brain tumour first showed up on a scan it was almost like it wasn’t a surprise. Human beings have a great capacity for intuition. It’s probably what’s kept us alive for so long and I knew something was wrong, really wrong, before any doctor assessed me.

At first I refused to believe it. Then I wondered what on Earth I was going to do about it. Finally I had to accept it was there and it was happening to me. I don’t know why this particular life challenge was presented to me. I wish I’d been as lucky with the odds when playing the lottery. The chances of getting this type of brain tumour at my age are roughly similar to a six ball match jackpot win.

It’s a strange feeling knowing there’s something inside me that shouldn’t be there. It doesn’t exist in healthy people and it didn’t used to exist in me, so why is it now there, like some alien parasite that my body decided to produce without consulting me first? I think that’s the major feeling I have about living with a brain tumour. It’s an unauthorised invasion of my body.

The physical side effects of having a brain tumour, biopsy, radiotherapy treatment and the subsequent recovery through steroids and painkillers have, at times, left me as a shell merely existing day to day wondering what happened to my life. These side effects are a very difficult intrusion to accept into my life and undermine my mental wellbeing.

Dealing with the physical side effects continues to be a challenge. Fatigue is probably the side effect that causes the most difficulty as it impacts on everything I do. I constantly have to work out where to expend energy and build in recovery periods. I’m writing a post just about fatigue and I’ll put a link here once I’ve published it. In short, as a family we have to plan around my health and at times my wife and I both find this quite irritating.

I’m not ashamed to say I have wondered what the point has been of all the treatment. I’m left wounded with a permanent brain injury which is going to affect the rest of my life. What if I can’t regain my stability? What if I can’t improve my physical condition? What if I can never drive again? What does it mean for my dreams, and those I share with my wife and daughter? After all, one of the most likely outcomes explained to me by the neuro oncologist was that the growth of the tumour might only be arrested. In his own words, “I can’t make you better.”

That’s a hard diagnosis to hear. I sometimes roll it around in my mind like the gentle rumbling of thunder from a distant storm. I can’t make you better. From childhood we learn that illnesses come and go. They make us feel rotten for a short time but then we get better. The self-repairing ability of the human body is so amazing that we simply haven’t been able to invent a comparable machine. I’m immunised against major killer diseases, I live in a country where a lot of illnesses cause zero fear, so I struggle to comprehend that given enough time and rest I won’t just get better on my own.

Each fraction of radiotherapy felt like thirty unique challenges lined up like dominoes. At my initial radiotherapy consultation I was once again made aware that the ultimate goal was stopping the tumour in its tracks; “don’t expect too much” but even in the depths of radiotherapy, photon beam zapping away causing my optical nerve to flash like lightning and a smell of burnt rubber permeating my nostrils, I still thought I’d get better. The posters in the Cancer Centre steadfastly promoted radiotherapy as ‘cutting edge’ and ‘can cure cancer’. I notice it quietly omitted to say what types of cancer could be cured.

So I was in denial about my diagnosis right from the start and sometimes wound up in a miserable downward spiral, slowly imploding as anger and resentment built up. It made me so angry to see that my life, our family life, was really coming together and then this, this… thing appeared and started robbing me of everything we’d worked so hard for. It continues to make me so very angry.

I needed help with my mental wellbeing. Eighteen months of living in the eye of the hurricane had taken its toll. My GP suggested a self-referral to the North Staffordshire Wellbeing Service. My initial consultation happened within a week and was akin to a mental health triage where I was referred to the Cancer Psychology service. The service was appropriately positioned to help someone like me.

My psychologist suggested at our first session that I’d never accepted the diagnosis. She’s right but I’d never thought of it that way. She also recommended a couple of books that I could read before our next session. I’ve got them, I just haven’t read them yet so if they’re any good I’ll update this post with some details. They are centred around ACT: Acceptance and Commitment Therapy. It’s also described as a call to action and is quite different from Cognitive Behavioural Therapy (CBT).

I think I’m on the right track but I can’t be sure until I’ve had further sessions. I know I need help and tools to adjust to the future. Talking to a psychologist removes the worry of the impact I might have when talking to my wife and family. I don’t have to be sensitive about what I’m saying, I can just tell it like it is.

Don’t get me wrong, family and friends are huge sources of support and they’re all willing me to get better. Like me, they don’t have any control over my health and sometimes all they can do is cheer from the sidelines. The end of this post is just for them. I do appreciate the support, I’ll ask for help where I need it (my wife correctly describes me as stubborn) and sometimes it’s helpful knowing that if I fall from the tightrope I insist on walking whilst I try to recover, I won’t fall too far. I need to try to regain my sense of self but I know where my safety net is.

My heartfelt love to you all.