A Sense of Tumour

I’m still here.

June 4, 2021

A lot has happened since October 2019 when I last published a post. 2020 was a tumultuous year for planet Earth and inevitably my time and effort was spent in every direction apart from my blog.

I recently checked the reader statistics and was surprised to see quite a few visitors and views from across the world over the last few months.

It feels like the right time to pick up where I left off. I’m on routine scans every 12 weeks as the tumour isn’t changing much. I still have over 30 posts in draft status, many of which I can combine and bring out some of trials and tribulations of living with a brain tumour. Every day presents different challenges.

So I hope you’re poised for some new posts over the coming weeks…
All quiet.

October 23, 2019

I’ve been quiet, I know. My writing was always going to be sporadic, providing sparks of illumination on a life less ordinary but lately I’ve been doing a lot more contemplation than writing.

It’s probably tied up with my acceptance and commitment therapy. When seeing a psychologist the hard work is done between appointments. The actual hour in which we catch up on anything and everything takes place every few weeks and simply provides momentum into the next phase of thinking through reflection and asking me the right questions. That’s why it’s important to work with a qualified psychologist and I mean work with in every sense of the word; they’re part of my recovery team but if I’m to improve then the onus is on me to do everything possible to help myself. It’s not easy. Holding your own personality in front of a mirror reveals truths that you’d prefer not to confront. The reflection is immediate and unflinching.

Do you remember as a kid recording yourself on a cassette and then playing it back? You’d squirm and think, “Do I really sound like that?”

Yes, you do sound like that. It’s OK though, it’s how everyone has heard you for most of your life. The only person it’s a shock to is you.

I recently listened to myself on the radio. I was a guest on mid-morning BBC Radio Shropshire, helping Macmillan promote their Living With and Beyond Cancer programme. I was very pleased to be asked and glad to help. My perspective was as a patient who has experienced the programme and received some of the benefits. At the time it was just like having a chat on the phone with the presenter but I was brave enough to listen back a few days later. Listening back to myself I realised that I say ‘erm’ rather more often than I’d like, but my message came across clearly. I didn’t enjoy the sound of my voice as it still isn’t how I imagine I sound. I’m reliably informed approximately 90,000 people heard me and I sounded exactly the same to each and every listener.

“All of us, each and every one, lives a life that is, in its own right, an epic.”
Richard Hammond, On The Edge

The over-enthusiastic ex-presenter of Top Gear isn’t, perhaps, an obvious source for inspirational quotes, but this quote contains hidden depth gleaned from his many years of working in local radio. I’ve listened to various local BBC radio stations since my very brief appearance and his quote rings true. I have a new found respect for everyone working at a community level. Being seriously ill is a humbling experience in itself, and hearing other people’s stories, often invisible to the wider world, gives a real sense of perspective which can sometimes be absent in my bubble.

Meeting with the psychologist is a bit like recording your personality onto cassette and then playing it back. It’s not quite as immediate as a mirror; my brain simply can’t work quickly enough for real-time processing.

Loved ones, and close friends, reassure me that I haven’t changed as a person but they know there are some subtle differences. After all, I’m living with a brain injury. There are parts of me that haven’t changed throughout the last two years, my infamous stubbornness being one of them. Other parts have changed. I don’t always process information as logically as I used to, I can read too much into situations or even the intonation of a voice.

I suspect I’ll never truly accept my diagnosis. I’m still the same person I was, but it’s hard work to be normal. Hard work that requires a bit of quiet.
The end of the beginning.

September 24, 2019
September has always been my favourite month. The sun radiates its final glow before winter’s arrival, the air is that bit crisper and I find my mind selecting a new gear with the slow change in season. Warm days give way to cool nights via supersaturated Technicolor sunsets, the gentle and evocative smell of wood smoke rising through the still evening chill. Leaves drift downwards, creating an organic carpet underfoot that turns damp and mossy. There’s no such thing as a bad weather day, just a bad choice of coat. A walk outdoors can be a friendly and welcome assault on the senses. You can breathe autumn in.

Autumn 2017 feels like a lifetime ago. So much has happened, so much has changed, sometimes I feel like Dorothy in The Wizard of Oz. My life was picked up by a hurricane, tossed around and splintered upon landing with the diagnosis of a brain tumour. It’s had such a tumultuous effect that sometimes I don’t quite know where I’ve landed. I’m sure my wife feels the same. Some days I feel like an explorer visiting an alien world, donning a big heavy spacesuit that occludes the finer details of life. I have to constantly refer to memories of life pre-tumour as a datum to help me process current information. I don’t always come to a logical conclusion.

Autumn 2018 was the height of my illness and I was undergoing radiotherapy. I stopped looking at the outside world; I found no joy in being outside. It was a chore to be outside. My world became sterile and extremely inward looking. Such overt introversion did nothing to improve my mental wellbeing and I started to retreat from the world. I worked hard during radiotherapy to stay active, as all evidence shows increased exercise can improve outcomes, but after treatment finished I struggled to summon any enthusiasm for walks. I became quite reclusive in many ways.

Autumn 2019 is vastly different. It’s nearly twelve months since radiotherapy treatment was completed. I’m back at work part-time, on a phased return. I’ve reapplied for my driving licence. I’ve learnt to walk without my stick. More importantly I’ve got my head up and I’m looking outwards.

The reason for this is my latest MRI scan results and clinical review. Pent up nervousness almost boiled over in the run up to the appointment with the consultant and clinical nurse specialist. The neurosurgeon who performed my biopsy noticed my wife and I waiting for my appointment. She came over, remarked upon how well I was looking and said that she’d kept an eye on my case through the multi-disciplinary team (MDT) meetings.

Then all of a sudden it was my turn. We were ushered into the meeting and greeted with quite a lot of news.
- There is radiation scar tissue which casts a shadow over the tumour – the tumour shows up bright white with contrast dye, the scar tissue is grey.
- The size measurement is now made up of the tumour + scar tissue.
- The size has not increased since the previous scan.
Conclusion: the tumour has been arrested and has maybe even shrunk slightly. The brain can repair radiation scar tissue to a certain extent but takes a very long time. If the tumour is now dormant, I can expect some further improvement in my condition over the years, but I will still require a scan and review every twelve weeks for the next year. Last year we were discussing whether I’d have a life. Now we’re discussing what quality of life I may have.

I’m allowed to fly again. There is no hint of a refusal of my driving licence application, I just have to wait for DVLA to make their decision. I still have side effects to cope with but I am so much better than I was.

I know this is just the end of the beginning. A beginning that’s lasted almost two years. I now have to learn to live my future life and connect with reality. Whilst there are things I can’t do, there are many things I can do and I’m at a stage where I need the positives to outweigh the negatives.

And, after coming to land after my review, I’ve come to the conclusion that there really is no place like home. But there’s also no place like outdoors in September.

Perhaps there’s no place like coming home after being outdoors.
I can’t make you better.

September 3, 2019

“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.