21st August, 2018
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 I found this [mentally] difficult.
My height gap was markedly apparent when I was playing my favourite sport, rugby. It's very hard to disguise the fact that you are not keeping up with others of your age in relation to your physical development when you are by far the shortest of 29 other players who were often very tall for their age. The large open space of a rugby pitch exaggerated the difference in height and the fact I was falling behind. My dad used to coach my team and his encouragement was one reason why I kept going. I was okay once I was there and I enjoyed the post training socialising!
When, at 15, I was given my diagnosis by the doctors at Addenbrooke’s Hospital, Cambridge and it was explained to me why I was considerably shorter and less progressed in terms of my development comparative to others my age, much of the above then made sense. After my surgery, I was told that despite a non-functioning pituitary gland, much of its function could be substituted by appropriate medication. With efficient treatment, the pituitary gland’s role could be compensated for. This medication has enabled me to ‘catch-up’ with people my age, in terms of height and development. Although I am still considerably shorter than most of my good friends (5” 11”), this is less to do with the failings of my endocrine system and more to do with me having friends who are over six feet tall. :-)
As already mentioned in past blogs, being diagnosed with a brain injury is not easy. It is not something that we contemplate when we wake up in the morning, nor is it an event that we would ever prepare for – after all people joke about the significance of ailments in relation to a brain tumour and when I say I have one they are often taken aback. It is often a bit of a conversation stopper! It is a situation one is thrust into and forced to contend with.
Looking back at my diagnosis and how I felt the time, my fears and worries were pretty much exclusively centred on the acute/immediate consequences of brain injury, that is, the risks and post-operative challenges of surgery. A flurry of ‘what if’ questions were playing on my mind. Questions that I imagine most people in the same predicament would want answered. I had a lot of questions for the doctors treating me. I know that when initially diagnosed, I would have welcomed and appreciated the opportunity talk to someone else who had been in my situation at my age. Someone who both understood what it really meant and what helped them come to terms with the initial shock of the situation, as well as what the future would hold. However, this crystal ball of answers of what tomorrow will bring did/does not exist.
There is a lot of lying around in bed waiting for results, news and plans from doctors. During this time, I would often think of a catalogue of new questions, normally related to my ongoing treatment, questions that only doctors can answer. It is very annoying when the doctors come to your bed and you forget the questions you want to ask or ask and then don’t remember their answers! This caused me no end of problems and associated anxiety. Now I am well practised and by trial and (a lot of) error, I find that the best thing to do is keep a small notebook by the bed, write down the questions for doctors as I think of them and get them to write the answers next to the questions. Now when my parents came to visit me and ask me questions, I have everything down in my book and I am able to reassure them.
Despite my initial fears of the impact of a brain tumour on my future, I am grateful to have done well in my GCSEs and A Levels and successfully studied at Newcastle University, where I had great fun. Not all bad!
“ The Hospital Brain Injury Co-ordinator became someone who absolutely understood how I felt, I didn’t need to explain. I could talk about my fears and worries. She was such a great support through the difficult days, but could also celebrate the small step successes, which was important to me. ”