Living with a Brain Tumour – Building Mental Fitness
Living with a Brain Tumour – Building Mental Fitness
Neil Bindemann PhD
My life and interest in the world of neurosciences started back 1988. After graduating from the University of Glasgow with a BSc in Immunology, and a growing interest in an field that was then just beginning to take off – neuroimmunology, I started a PhD in neurobiology. I needed to gain experience in neurology. My PhD subject was perfect. I put my knowledge of immunology to work and started a project that explored how of the immune system becomes involved in the process of nerve injury and regeneration.
While I enjoyed learning the neuroscience and successfully completed my PhD, working in a laboratory with animal models was not for me. During my final few months writing up my thesis, I started exploring my options and discovered the world of medical communications and education. But perhaps more importantly for me and my developing interest in psychology – it meant working with people!
So I moved into that field in 1993 and after gaining several years working with a specialist agency, I branched out to set up my own business, Innervate. The plan was to work in partnership with health professionals and patients to focus on supporting healthcare professional – patient communication and relations. Using my interest and experience in neurology I stimulated the creation of the Primary Care Neurology Society in 2014. Little did I know then that I would be moving across to the patient side of neurology!
It all started in 2015 when, after I came out of the MRI scanner I was told ‘please can you take a seat here, the doctors are just looking over your scan and would like to come and talk to you’!!!!! Well, that was it, I became a shivering wreck and needed a sweet cup of tea (more sugar than I had ever had!) and a blanket. Surrounded by a team of surgeons, I was told ‘there is a growth on your pineal gland and you are suffering from a dangerous level of hydrocephalus…. we can’t allow you home, so we are getting a bed sorted out for you now’. A rather difficult phone call with my wife ensued, who was collecting our 2 wonderful children from school.
The day of my surgery arrives - Friday the 13th of March, plus it’s Comic Relief Day! I’m no longer superstitious and thankfully I have a good sense of humour! My operation goes well and the surgeon deals with the hydrocephalus. Plus, with the aid of an endoscopy, he removes a chunk of the tumour. Thanks to the world-class surgeons I only need a short period of rehab and I am home within a week.
My wife and I are on tender hooks for the next week, waiting for the result of the biopsy, which I get via a telephone call shortly after going out to lunch to celebrate our wedding anniversary! The news is probably the best we could have hoped for – due to the low-grade nature of the tumour, I don’t need to go in for further surgery, and they will just watch with ongoing MRI Scans.
Now, this is where my interest in psychology and mental health starts. For me I believe trauma comes in all shapes and sizes, and it’s a very personal experience, no matter how old you may be. A toddler having an ice-cream snatched out of their hands by their pet dog may seem a minor insignificant incident to you and I, but the screams and tears running down their rather red cheeks should tell you that it certainly isn’t to the poor child. Mind you their ability to handle it and move on is perhaps not to be sniffed at. I believe we can learn a thing or two about building mental fitness from this innate ability of children to just live in the moment. Something that I have certainly applied to my life for many years.
Over the last 3 years, and especially shortly after coming home from hospital, and feeling rather isolated, (that’s another story – and something that I know is not uncommon and which the health service, in my opinion, could and should manage far better than it does) I believe my mental fitness (a term that entered my head as a result of my experience) has helped me through some tough and challenging times (with possibly more to come!).
When I started looking into it, I came across an excellent paper by Robinson, P et al who in 2015 defined mental fitness as “the modifiable capacity to utilise resources and skills to flexibly adapt to challenges or advantages, enabling thriving”.
One aspect of mental fitness, which like physical fitness, you need to work at, is to start thinking differently when challenges enter your life. This applies to health care professionals as well as patients. To illustrate my point, I wish to highlight the wonderful work of Sarah Pullen including her book ‘A Mighty Boy’. This book, in my opinion is quite simply an education; a must read for anyone who wants to be better informed when it comes to patient and parent care! Her experience of how she was told about Silas’, her son's, prognosis, who was diagnosed with an aggressive brain tumour is, very sadly an example of how not to tell parents their child’s life may be cut short. She was literally told, your son will be dead in 12 months’ time. While I certainly appreciate the very difficult challenge to relay difficult news, keeping patients and families hopes alive should be foremost in your mind, while balancing it with setting realistic expectations! It can be done, I can assure you - it just needs the person to think differently.
As some of you may know, March was the annual Brain Tumour Awareness month and I must say that my awareness of my brain tumour this March certainly increased. Virtually on the anniversary of my surgery I received the news that my next scan is to be brought forward by 6 months due to some growth. Thank goodness I’m can apply the thoughts and skills I teach in my mental fitness workshop to myself!
Robinson, P., Oades, L. G., & Caputi, P. (2015). Conceptualising and measuring mental fitness: A Delphi study. International Journal of Wellbeing,
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