International Brain Tumour Awareness Week 2019 - Sam's Story

International Brain Tumour Awareness Week 2019 - Sam's Story

27th October, 2019

Some people may think that a brain tumour is all in your head but the reality is it is far from it!

The initial effects of a brain tumour are dealing with the cold, immediate reality of diagnosis, surgery, and in my case, radiotherapy.  During this period, the priority was just dealing with and controlling the tumour. Only after this came the challenge of trying to return to some sort of day-to-day normality.  

The ramifications from the physical origin of the problem have a far-reaching effect on the individual; both physically and psychologically.  As I was told by my neurosurgeon, each tumour is unique; as of course is each person. 

My brain tumour is located on my pituitary gland - the part of the brain that is crucial in controlling all the endocrine glands in the body that secrete hormones (‘chemical messengers’). These hormones are responsible for a wide range of essential bodily functions such as growth and other general changes associated with a person's maturation - science lesson over!  It wasn't until I was 15 years old that my brain tumour was diagnosed, so it had already had a profound and visually evident effect on my adolescent development. Whilst some of my peers were six foot plus, I was probably still slightly shy of five foot. By Year Ten of senior school the gap between my own development and that of the other pupils around me was becoming more and more obvious and something I found [mentally] difficult.

On the day of my admission to hospital, I experienced vomiting, disorientation and acute headaches. Thinking that this was to do with my new glasses, we sought advice from the optician. However, my symptoms got worse whilst at the optician and an ambulance was called. After being rushed by blue lights to my local hospital, my MRI scan results triggered my transfer to Addenbrooke’s Hospital, Cambridge. I was diagnosed with a ‘Giant Craniopharyngioma’- a benign but serious tumour. Surgery would be imminent, in order to dissect as much of the tumour as was safely possible without causing permanent damage.

After surgery, I underwent two courses of radiotherapy, in 2002 and 2015. My initial round of radiotherapy was a post-surgical intervention aimed at reducing the solid tumour further as well as preventing any regrowth. Ten years afterwards, components of the tumour caused further problems affecting my mobility, speech and functioning skills. For the three years that followed, I underwent five further surgical interventions to control the areas causing problems. 

I was only the second person with my condition to be offered further radiotherapy. This only enhanced my fear of the proposed treatment and the idea of being a ‘test subject’. The experience caused me a multitude of emotional and physical reactions. My first round of radiotherapy caused my hair to fall out in patches. This was awkward and embarrassing since I was still at school. I had my hair cut very short and my family took to calling me ‘Dunlop’ as I looked like a tennis ball! The travel to and from Addenbrooke’s Hospital was arduous and interrupted the day. I felt bad for inflicting these burdens on my mum too, as she usually accompanied me. On top of everything, the increased and accumulating fatigue only seemed to get worse. 

The main areas that I feel my brain tumour have affected me are:

·     disruption of preconceived ideas of my future aspirations

·     loss of independence

·     freedom of movement and difficulty with decision making

·     general frustration and anxiety

·     left sided physical weakness and left sided visual impairment

·     reduced memory capacity (I am told!)

Headway Cambridgeshire have not only taught me a lot about the effects of brain injury and strategies to help manage the associated challenges, but enabled me to attend structured sessional groups to help both my physical and cognitive rehabilitation. I have learnt this information not only via the teaching of the sessions by staff leading the group but also from sharing information with other clients.

Despite everyone's differences, I perceive I have a large amount of common ground with other individuals who have brain injuries e.g, poor memory and lack of spatial awareness. Hopefully, by reaching others with brain injury, my experiences will be recognised by them and we can benefit and seek mutual reassurance and empathy. I find it particularly encouraging hearing of others with brain injury succeeding in their rehabilitation back into employment and family life. Understanding and educating the community to iron out myths about brain injury is an objective of mine.

My family have supported me through unpredictable ups and downs and I feel so grateful and privileged to have their continuing love, support, reassurance and encouragement. There is no doubt in my mind that I would not have made anywhere near the progress I have without them. 

I cannot know to what extent the impact of my brain injury will restrict my future i.e., employment and family.  What I am trying to do however, is use the time I have now to make the necessary adjustments to increase the likelihood of a positive, realistic and fulfilling future.

Sam Robinson

You can read more of Sam's account here: My Experience of Brain Injury

Thank you for the support and advice that you have been giving my husband. This has in turn taken a lot of pressure off me and has helped me through his bad days and angry spells.
Christine, wife of Headway client