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©2018 Third Ventricle

A brief History of my brain 

Rather a lot seems to have happened to me over the last 3-or-so years. So I thought it would be useful to provide a cranial chronology of the brain bonanzas, hormonal happenings and surgical stuff that’s gone on, as well as some other information that should hopefully give a bit of context to some of what I’ll explore in the blog.

My diagnoses

Brain haemorrhage from a low grade inoperable brain tumour and resultant thyroxine and growth hormone deficiencies. Some of the continuing effects of tumour & hormone deficiencies include: severe fatigue (even with medication), memory difficulties, reduced processing speed and trauma.

 

A Chronology

Prior to my trip to Morocco I had no indication of any medical conditions, aside from a smattering of asthma that was, and probably remains, more of an irritation to those who have to hear my coughing than to me.

On the 4th of July 2015 I set out on a 7-day school trip to Morocco with the goal of summiting Toubkal, the tallest mountain in Northern Africa and the highest peak of the Atlas Mountain range. At this point I was at the end of Y10 and was 14 years old.

After flying from Manchester airport we spent the first night in Marrakech before beginning climbing the next day. I had been violently sick on the first night, so I didn’t walk on the first day.

During the trip, I felt and became very ill. However, determined that I had a particularly virulent case of food poisoning and nothing more, I drastically understated my condition. As a result, nobody thought anything was seriously wrong.

Sometime around 8th July we summited Toubkal. On the day of summiting I initially felt so ill that I didn’t think I’d make it to the top. However, I obstinately carried on climbing!

Over the next day and a half, we descended the mountain and, by 10th July, we were in Marrakech. We spent a day touring the city and, eventually I became so ill I remained in the hotel whilst the rest of my group continued their exploring.

On our way to the airport, I was constantly being sick, and felt panicked but immensely relieved at the thought of being able to go home, see my parents and visit a doctor.

I was told to ‘act well’ on my way through airport security, in case they refused to let me on the plane, and eventually made it to the shopping concourse area of the airport. The last thing I remember is sprinting the public toilet to vomit and then returning to my seat in a café. From what friends have told me, I collapsed about 10 minutes later.

I became unconscious and was taken by ambulance to Clinique Internationale De Marrakech, the nearest hospital. I had entered a coma. My parents were called by the teacher on the trip and made rapid arrangements to fly out to Marrakech from Birmingham.

After scanning my brain, it was discovered I was having a brain haemorrhage from a previously undiagnosed brain tumour.

Still in England, my parents had to give consent over the phone for emergency neurosurgery to be carried out to relieve the pressure on my brain. Without this, I would have died.

My parents, along with my Aunt, flew out to Morocco and were with my 24 hours after the initial phone call about my collapse. I spent my 15th birthday in a coma and on a ventilator machine.

I had a further neurosurgery in Clinique Internationale and was “ventre libre” (breathing free) – after 3 days, I had come out of my coma! I was hugely confused, unable to remember anything from moment to moment, including recognising my parents.

Once it was decided my condition was stable enough, I was flown, in a medical evacuation, to Birmingham Airport, UK. I had what was effectively a second brain haemorrhage on the plane when my shunt (the tube inserted into my head to drain the blood from the haemorrhage) blocked. This was not identified until I had arrived at Birmingham Children’s Hospital (BCH). It was not clear whether I would survive.

BCH performed emergency neurosurgery to relieve the pressure on my brain. Over the course of the next 2 weeks 2 further neurosurgeries were performed, including a 9 hour operation to debulk (take bits out of) the tumour and drain blood from my brain.

I was diagnosed with thyroxine and cortisol deficiencies and was sleeping for around 20 hours each day. By the point of leaving hospital, I was able to walk about 10m before needing a long rest (it was a big achievement!)

I left Ward 10 (the BCH neurosurgery ward) on 29th July 2015.

My Granny and Grandad came to care for me and help around the house in July and August 2015. I remained very confused, with little to no short-term memory, and slept for most of the day. However, I was also ecstatic with confusion and the joy of being alive!

I was determined to return to school for Y11, my GCSE year, and take all of my qualifications, ignoring advice to take a year off or only take a couple of GCSEs.

I returned to school on a part-time basis (1 hour a day for 2-3 days per week) in September 2015. My fatigue and memory difficulties made learning very difficult. As a result, I self-taught several of my GCSEs. Additionally, my processing speed (my like a computer!) was affected, so I was forced to take much longer in exams.

Throughout Y11 I was in school no more than 50% of the time, self-studying for the remainder. I sat all of my GCSEs in summer 2016.

Much to my surprise (still!) I gained 9A*s, 1A and 1B grade in my GCSEs.

I returned to school in September 2016 to begin my A-level studies. A few months later my very supportive head of 6th form suggested I study for A-levels over 3 years. I decided to sit my A-level history in 2018 and my A-levels in biology & English Lit in 2019. This was a brilliant piece of advice and has made my 6th form studies possible.

I continued my 6th form studies and, in September-October 2016, began psychology treatment for trauma at BCH.

 

In December 2016 I was diagnosed with growth hormone (GH) deficiency, which further exacerbates my fatigue. This had been previously undiagnosed, including during my GCSEs, because I had adapted to manage my fatigue so well. Due to medi-faffles (as I like to term them), treatment for this only begun in September 2018, so I sat my history A-level without treatment.

In June 2018 I sat my A-level history exam. Again to my surprise, I gained an A*.

Currently I am studying A-level biology and English lit. I am hoping to study English at uni after taking a gap year to do bugger all for a few months, and then some volunteering with BCH and the Brain Tumour Charity. I am now treated at the Queen Elizabeth Hospital, Birmingham (QE) under neurosurgery, oncology and endocrinology. I have regular MRIs and hormone checks.

I also have a very miserable cat, Hedwig.