Learning from my brain tumour experience, by the Neurology Society’s director

The Executive Director of the Primary care & Community Neurology Society discusses his brain tumour experience & why patients should be routinely discharged to specialist community care services.

The mental trauma and shock

It all began when the neuroradiologist walked over to me and uttered the words: ‘Would you mind just taking a seat, the doctors are taking a look at your scans and would like to come and have a chat with you’. I was sent into shock, given a blanket to help my shivering body, and the sweetest cup of tea I’d ever had!

Subsequently, I found myself surrounded by surgeons telling me the MRI scan had shown a mass on my pineal gland and that my brain was under a dangerous level of pressure. So, I had to be admitted immediately.

The physical trauma

Fast forward a week; I was back home (I didn’t know the exact diagnosis or prognosis) recovering from surgery, to debulk a tumour, which couldn’t be removed as major blood vessels were in the way. It wasn’t until later the next day, when my wife and I had returned from celebrating our wedding anniversary, that my surgeon rang with relatively good news – the tumour was a pineocytoma, a low grade, non-malignant brain tumour. I didn’t need any further surgery but would have regular follow up scans to monitor its growth, which remained active until March 2019, when I was given the news that it appeared to have stopped growing. I had put myself on the ketogenic diet in March 2018 – but that’s a separate encouraging story! 

Isolation, short-term memory loss and low mood

No matter what type of brain tumour or diagnosis, the sense of ‘isolation’ once back home, having been in the secure environment of the hospital, was not insignificant.

To make matters worse, my impaired immediate-recall/short-term memory interfered with my attempt to re-engage in everyday activities, causing my stress levels to heighten. For instance, when out of the house I would constantly check for my wallet or my house keys.

Then there is the loss of a driving license and the impact on an adult’s sense of independence. No matter how kind people are in offering to transport you, if you drive, it is completely demoralising not having that freedom.

A plea for all brain tumour patients to be discharged to a community rehab service

When diagnosed with a non-malignant brain tumour, it often feels like our situation isn’t regarded serious enough to require rehab. What the National Health ‘System’ fails to recognise is the significant trauma both physical (to the brain) and mentally (to the mind). It was only because I am fortunate enough to have a neuroscience background and know a bit about the brain, that I created my own mental fitness programme.

So, instead of been discharged home, all patients and spouses or parents (in the case of children) should be referred to a community service for a simple needs’ assessment.

This sort of service could, help explain either to a family member or the person themselves, that it’s not unusual to experience feelings relating to isolation after a stay in hospital. Then there’s memory problems or other forms of cognitive functioning impairment. People need to be better prepared for how this will interfere with their everyday activities and given some simple strategies on how they can help themselves.

This simple step would bring so many benefits, psychologically as well as socioeconomically. Everybody (including family members and partners) would have a better quality of life and be more able to live through their brain tumour experience.