So you survived a brain tumour… what next?

When I awoke from my first brain surgery, I was in shock. Not from the pain, the screeching machines or glaring lights, but from waking up at all. 

I had been convinced as I was wheeled off to theatre, giving my mum a grin and thumbs up, that this was the last moment we would see each other. I wanted her to remember me smiling and unafraid. By that point, I was at peace with dying. There are worse ways to go than under anaesthetic. 

I had been warned of the risks of death. Surgery is inherently risky. Brain tumours themselves reduce life expectancy more than any cancer, with only 12 per cent of those diagnosed living beyond five years. They are also the biggest killer of the under 40s of all cancers. My family had been warned I might have significant brain damage or changes in personality. But right now, thrust back into a cacophony of harsh lights, noise, and drug muffled agony, I was feeling less than lucky or grateful. So began a journey of survivorship which continues to this day, and which has led me to Psychology…

A mental transition

The mental transition – from accepting death to suddenly being told you are good to go home – is not achieved in a day. The research into experiences of parents of children with brain tumours highlights significant trauma. Indeed, similar findings have been reported in adult studies, noting not only the physical challenges of treatments but also emotional and socially isolating effects that can last years or often decades. 

Sitting there with tubes in my body, half a head shaved, face a rainbow of yellow, black and blue bruising, I was not ready for my well-meaning family's questions about when I would be going back to work, what degree I wanted to do… I had planned for my funeral not a future. I felt as though we were all on different planets. A friend brought in some biscuits, and my aunt asked 'should you really be eating that?'. I was jolted into my body again, a body that would now have to last, to carry me through what was to come. I wouldn't need that organ donor card just yet. 

I felt as though the universe had got it wrong. I was living on borrowed time, convinced that although I did not die that day, it would happen imminently. I began to have intrusive thoughts of falling downstairs, tripping with a kitchen knife, being in a bus crash, slipping in the shower, electrocution when turning on a light… all ending in my demise. Brain tumours are particularly associated with significant prevalence of Post-Traumatic Stress Disorder (PTSD) in comparison to other cancers.I later realised this was what I was experiencing. 

I saw many neurology specialists, yet I was never offered any psychological support or signposted to any organisations. After all, I had a low-grade brain tumour – 'that's not really cancer, is it?'. The cancer services are there for people with real cancer, not for the 'lucky' people like me. I was repeatedly told I must be feeling amazing. Indeed, I did look lucky. My face healed relatively quickly, the facial nerves on the left side of my face regrew eventually. My hair flipped over and masked the incoming fresh crop. Within a few months I looked like me again, not that I was a good judge of that. My memory was shot, I couldn't concentrate, and insomnia tormented me as my sleep centre was affected. I also was left with prosopagnosia (face blindness). I may have looked lucky, but inside I felt fragmented. 

The 'sick person' lens

In an effort to regain control over my life I decided, against my neurosurgeon's advice to postpone for another year, to begin studying a degree in business management. I was stubborn, and grasping for a purpose other than sitting on the sofa and thinking about my recovery. I struggled through the first three years of the degree, relearning how to learn. My memory was damaged, with a compressed hippocampus and temporal lobe hole the size of an egg. I look back and wonder how on earth I managed it. 

At university they allocated me a student support worker due to my memory and prosopagnosia issues. She had amazing wild curls of hair and she noticed that whenever she wore it up, I would walk right past and not recognise her. She kept that hair down for the entirety of my course. I shall never forget her kindness. 

By the middle of the fourth and final yearmy spelling and speech started to deteriorate. I instinctively knew I had another brain tumour. When I called my neurologist's office, they insisted I didn't need another MRI scan for at least another year as my chance of a recurrence was 1 per cent. After my repeated concerned phone calls, I had an MRI scan. I was right. 

In the lead up to the second surgery I felt almost at home. I had done this before. I knew how to be sick. People saw me through the 'sick person' lens, and that probably included myself.  There is something seductive about being ill… people are nice to you, nurses pat your hand, no one nags you about your grades. 

I shocked myself by surviving again. I returned to university after a year out and completed my degree. Fortunately, this time around, I had a wonderful university therapist who helped me with the flashbacks and intrusive thoughts. Across 18 sessions she helped me find my footing again, challenging the pervasive feeling that I was on borrowed time. Such was the transformative experience of this therapeutic input that I began to consider psychological support as something that should be essential for those like me, the 'lucky ones'. 

Back on my feet, life marched on and years ticked by. I began to understand that I was grieving the simplicity of being ill. That safe cocoon. I felt guilt around those feelings… surely, I should feel more grateful? Everyone around me seemed to think so. Others with brain tumours, people I had grown to know and respect, had died. Why them and not me? 

Emotional whiplash

Then there was the pressure of my elevated, almost saintlike status. I had survived the virtually un-survivable. Surely I should now be able to change the world, be an inspiration to others? Imagine being told, 'You are destined for great things', 'God has plans for you', 'The world is your oyster, nothing can stop you now'. All I wanted was to shrink away from the microscope. The more I protested, the more I was considered both modest and amazing. It felt like emotional whiplash… I would ask the universe when I might be allowed some respite from this exhausting back and forth.

As the years ticked by, punctuated by the annual MRI scan, I got married, worked abroad, and moved house six times. I had a talented therapist who introduced me to mindfulness, and I had a turning point. I changed from feeling I was on borrowed time and that death was inevitable, to embracing the idea of living in the moment… doing the best with what life I had, no matter how long or short it happened to be. 

Working in a hospital as a Project Manager I began to question my career and my life's purpose. I was in my late 20s, an age I never expected to achieve after my initial diagnosis at 20 years old. My thoughts on feeling more comfortable being ill, or fleeting regrets for having survived, seemed so taboo that they should never be uttered and certainly not written down in black and white. I felt I would be saying the unsayable: hardly an inspirational TED Talk, at any rate. But surely I couldn't be the only one who had these thoughts? 

I discussed shared experiences with a friend and fellow survivor, and he told me:

It did make me think about mortality and stuff but I think there is a romanticised idea of people who go through this sort of surgery then living life to the full, and it's great that some people do...but the reality is most people probably don't have the opportunity to live like that. For me that would be like being able to spend more time with the kids but then I don't because I'm busy with work and then you think, that's not living life to the full! 

It was these questions about expectations versus reality, and the mental recovery from critical illness, that led me to recently complete an MSc in Psychology. I wanted to use my circumstances and understanding to benefit others. 

A gap in the research

Learning about brain tumours and epilepsy in the neuroscience modules was terrifying and fascinating in equal measure. I had opened my own personal Pandora's box. As the degree progressed and the more I researched the psychological impact of brain tumour treatment, I noted that previous qualitative studies did not usually include the perspectives of adults post brain tumour treatment – they focused on perspectives from carers or a spouse instead. The body of research also tended to exclude the perspectives of patients with low grade tumours due to their benign non-cancer status, include other brain injury conditions in the research or conduct research from a particular angle such as existential well-being or positivity.

This gap in research and the apparent lack of post-operative psychological support for the increasing number of survivors of brain surgery, led me to focus my MSc dissertation research on adults' post brain tumour treatment by exploring their experiences through a Thematic Analysis of 100 blog posts.  

Whilst working on the blogs for research, I found so many experiences that mirrored my own while also revealing some findings I had not anticipated – a lack of perceived control by survivors in relation to their care, time, decision making, and appearance leading to issues with identity, decreased mental health and reduced quality of life. These finding were supported within the current body of research in relation to chronic illness in general and other cancers. Yet after all of this I was still left with more questions than answers… I suppose that's the essence of the drive towards further research.

One blog post that struck a chord with me was where a blogger was celebrating his 49th birthday, wishing that he might make it to 50. Sadly, he did not reach that milestone and passed away a few months later. While I was reading his blog it was also my birthday week, turning 30. I was reminded how on my first diagnosis I believed 30 was wishful thinking. During the dissertation write up I was also due my annual MRI scan. It would be 10 years from my first brain tumour, and fortunately I was given the 'all clear' for another year. It feels like a game of Russian Roulette. Twice I've received the bullet of phone calls telling me I have a brain tumour, many more times the all clear. The ratio makes no difference – the call confirming that you have a brain tumour is indelible. I was feeling everything afresh in going back to analyse some very similar experiences in the blog posts, but I returned to the dissertation with a renewed sense of purpose. 

What next?

The perceived loss of control over 'time' was a common theme and source of distress for the bloggers in my research. Lost time waiting for treatments, results, reduced lifespan or inability to future plan chimed with previous studies suggesting that longer-than-expected recovery and unmet expectations can leave over a third of critically ill patients experiencing depression over a year after their initial diagnosis.

Having just turned 30 years old and completed the MSc, I began to ask what was next. Is my future guaranteed enough that I might be able to contemplate children? More people are surviving brain tumours for longer periods of time due to scientific advances. I am one of the 10 per cent minority who have survived past five years. However, no general patient guidance is available on the risks of increasing tumour occurrence or mutation due to pregnancy. Trying to make this decision by myself with only limited information I had found during my neuroscience module or scrolling through papers online was proving fruitless and frustrating. The 'unknown' contributing to stress is well supported by studies measuring effects of long-term stress experienced by those with long term illness, and so my frustrations were not unfounded. 

I scheduled a phone call with my neurologist, sending her through a literature review I had conducted for my own interest. The appointment revealed that, yes, there are significant increased risks, but that these risk levels were dependent on the tumour type I had. I was again reminded by my neurologist that I am a minority within a minority – a brain tumour survivor and one considering the possibility of having children. My tumour samples are now going to be tested with the best of modern science, 10 years after the first surgery; a process called Lumina methylation where genetic markers will hopefully accurately determine my brain tumour grades and types. 

What are the ethics of having a child when your own life expectancy is reliant on ever-evolving statistics? It's a question I have asked myself. The more I understand, the less I feel I know. For now, I just plan to lead a productive life. I want to expand my MSc research into a PhD on adult brain tumour experiences, adding to the support and knowledge available for healthcare professionals who work with brain tumour survivors, or for therapists to gain a better understanding of a survivor's personal experiences.

Healing the inner scars

In a recent chat with the same fellow survivor, he also noted that some form of mental health support would have been beneficial during the recovery period. He indicated that he was not offered any formal mental health support or signposting during his recovery and further commented, 

I'm not talking like loads and loads of sessions but maybe like a couple just on that period of recovery would have been nice… I think it probably would have helped to understand fully what I needed to do to make a speedy full recovery and to just get things off your chest a little bit, I mean I didn't really speak to my family about it. 

His comments echoed sentiments found in my research, where bloggers did not indicate that they had received any formal psychological support from their medical teams. This absence of evidence of psychological support builds on existing literature recognising a gap between psychological support provided versus demand for support from individuals living with brain tumours. This is concerning, given that negative mental health outcomes such as depression following critical illness has been associated with poorer health outcomes such as slower recovery and increased mortality risk. 

My outward scars have healed, hair grown back and memory restored. The inner scars have taken much longer to heal and required more work. At times the turmoil and struggles have been unrecognised and even denied by the very people I wish I had support from. With the initial diagnosis of a low-grade brain tumour and the lack of clarity surrounding the second tumour, I consider myself one of many who have fallen though the net in terms of psychological support services. However, it is through the support of some very special people, furthering my education, seeking answers and a talented therapist that I have recovered. Through continuing my journey into psychology research, I hope to channel my experiences into the goal of making it standard practice to offer all brain tumour patients (no matter their grade) mental health support in their recovery.

 - Rachael Simms-Moore recently completed a Psychology MSc from Manchester Metropolitan University.

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