Paul’s Story

Paul on the beachAt the age of sixteen things were pretty much perfect for me. I was good enough at all things school based to be deemed ‘one of the good guys’ by the teachers, but was never so good that the other kids picked me out as someone trying too hard. I was particularly good at all things ‘sporty’, playing football, rugby and cricket to a pretty high standard, which also made me popular with the girls at the school next door. The possibility of one day making a living from kicking a football was certainly there. All was pretty well perfect for sixteen year old me.

However, barely two months into being seventeen something happened that would change this state of ‘near perfection’ forever, and lead my life down a much different path to the one I had been lining up for.

On June 8th of 1993 (rumour has it this was the hottest day of that year) I was playing football at school during the lunch hour as I had frequently done for many years. Something like twenty-a-side with coats for posts and an unlimited sized pitch. The same as so many other days in my years as a school boy.

On this day though, after some ten minutes of playing, I collapsed to the ground and ‘shook about a bit’. With school kids being school kids and knowing that I played football a lot, they all assumed it was a joke. Imitating future footballers maybe, with a modern day dive. I was told afterwards that a close friend actually dribbled the ball around me. Thankfully a girl realised that I was having an epileptic seizure. She leapt in, stopped me from choking on my tongue and, I have always believed, saved my life.

My memories of this experience were sparse. I remember running around in the heat, chasing a football, then a blankness. I recall a coldness on my left cheek that I later realised was the grass I was laying on. I could make out an odd batch of colours, greens, blues and reds that turned out to be the dress worn by our headmistress. There was a buzzing sound that was presumably the hundreds of kids who, just like me, were running around on the field. I could make out the occasional ‘who’ and ‘what’ and ‘why’ amongst the mumbling and I will never forget hearing the words ‘is he dead?’ as I was lifted into the ambulance.

On the way to the hospital I could hear the voice of a friend informing them of my details. The boy speaking was not only a great friend, but also the guy who’d dribbled the ball around me! I don’t know if my memory of the ceiling rushing above me was a real one, or just flashbacks to moments from ‘Casualty‘ or movies with scenes of ‘man on bed being rushed into hospital’. In a strange way there was an element of excitement about it.

Some time later I was sat up in bed, feeling very heavy and incredibly tired. My friend sat on a chair against the wall and spoke of how one minute I was running about, the next I was laying on the ground. It seemed almost comical and I promised him that if I were to die that he could have my SEGA Mega Drive My mum arrived from work with a thousand and one questions for him though he never informed her of his dribbling the ball around me. My dad arrived a short time later with even more questions and it was all a little strange. The non smoking, fit, healthy and some would say good looking lad who’d been running around non stop since day one had collapsed whilst playing football. No six foot four defender kicking me and no ‘edge of the box’ free kick to be won. The seemingly perfect seventeen year old son had a problem. Possibly a serious one.

After brain scans and blood tests and other ‘medical things’ I was bought into a hospital ward and placed in a bed that was in the same section as the nurses’ desk. As I understood it, this was where the patients who were most at risk were based. Those who could need a nurse at any moment. Maybe even those who WOULD need a nurse at any moment. It felt like a case of when and not if.

I lay in the bed and looked at the old gentleman to my right who sat in his seat with what can only be described as metal scaffolding that appeared to be holding his leg together. It looked strangely like a successful attempt at the ‘puzzle’ round of ‘The Krypton Factor‘. ‘Build the leg in the quickest time possible’ perhaps. Opposite was an elderly lady who lay fast asleep in her bed that was in a slightly raised position. A bag next to her bed filled with urine at regular intervals. Both were maybe four times my age and I could understand why they needed the nurses to be twenty feet away. The idea that I was deemed as much as a risk as these two people was hard to contemplate.

I struggled to sleep that night and recall a nurse sitting on the edge of my bed talking to me and helping me to sleep. As a boy desperately in need of his glasses I had no idea who this lady was and most probably saw her the next day and completely blanked her. She was never thanked, and this is something that has happened on so many occasions since. Blurred people helping me out and never receiving a thank because I just don’t know who they are. Or maybe, who YOU are.

After being in the hospital for something close to thirty six hours (I counted every minute) I met a doctor who informed me that I had a brain tumour. He told me I would be taking medication to control the epilepsy that was bought on by the tumour, and that another scan had been arranged for the near future to see if the tumour changed in shape or size over the next few months. He then said something I will never forget. He offered the choice of radiotherapy now, or leaving it for a few years to see how things went. I was out of the hospital like lightning and pretty much went back to my life as normal. I still drank occasionally and continued playing football.

After a holiday in Spain that involved waking up at 2pm, heading out for eight hours at 10pm for far too much drink I returned home and decided that I would no longer be drinking. After a couple of mid game seizures my football days ended on December 5th 1993; my career was over before it began. I managed to play through the whole of my last game but sat in the changing room afterwards breathing like the ever present granddad of the kid who played on the left of midfield. I looked around and realised that I really was going in a different direction to the others around me in that room.

This feeling was echoed on nights out with friends. Though many were very good people, and some still friends to this day, the questions being asked involved where to find free alcohol, cheap drugs, and maybe a good bed for the night, preferably with someone in it. The questions in my head concerned whether I would make it to my twenties and whether I would force my parents to bury their only son.

When my eighteenth birthday came around my parents proved to once again be the best in the world as they replaced the now defunct challenge of ‘produce a perfect free kick’ with ‘perform a perfect guitar riff’. Both of which are of course impossible! The introduction of the guitar into my life was one that certainly helped me out and in many ways kept me in some way sane. Or at least, safely insane.

After moving to a new city and signing on for six months I found myself a little cut off. A nineteen year old who doesn’t drink alcohol or take any kinds of drugs is certainly a rare breed. I certainly pulled on my guitar for some emotional support and spent hours upon hours up in our thankfully large loft space writing songs and poems.

With assistance from the job centre I got a job in a record store and despite this being a great job, I was a little perturbed at how I had got the job. I had applied to the same store for a similar job just six months earlier only to fail without any kind of response. When I applied again, this time with the job centre now pretty much hailing me as ‘a disabled person seeking employment’, it seemed to do the job. This put me in a bizarre position. When I was turned down, I felt it was because of my disability. When I got the job, I felt it was because of my disability.

This proved to be one of many situations I would encounter in my life where at times it almost seemed that my disability wasn’t always a negative thing, or rather, my disability wouldn’t always have to be something that would hold me back.

At the age of twenty one I began a degree. I had been taking my medication for four years at this point and I’d been free of alcohol for the entire time. Despite having a regular job and working with good people, the lack of a cigarette in one hand and a pint in the other made me feel ill at ease in a pub and I was a rather solitary figure. As the summer passed and my degree approached I decided that to get the best experience from my three years at college, it would be worth drinking again. (I felt this way until maybe two months into my second year, when the combination of a lack of funds, an increase in my work load and an increase in my weight led to me very nearly drying up again!)

Rather surprisingly I proceeded through the course without my tumour really coming into play very much at all. I experienced no seizures during lectures or seminars and taking my tablets was second nature. In fact I still believe there were students on my degree who believed that I wore that “Medic Alert” tag as some kind of fashion item.

I continued on to do an MA in September of 2001 and all was moving on very well. I had moved out and after years of shared houses I was finally in my own place in the centre of the city, I could reach everywhere on foot and was thus never reminded that I would never be able to drive.

Unfortunately some months later I began to experience frequent bouts of ‘speech arrest’ and a series of seizures in the summer led to me moving back home and the radiotherapy offered to me way back in 1993 was now a necessity. It began in November 2002 and what I imagined to be an horrific experience over Christmas turned out to be a strangely pleasant one. Returning every weekday for six weeks, including Christmas Eve and New Year’s Eve, the place almost became a club. I would see patients each day and without any words somehow became friends with them. A collection of people of all ages and backgrounds, people you would walk past in the street and, with me being a shaven headed man of some size, maybe even fear. Yet we were all bought together with a common need and hope. I couldn’t help but be in some way inspired by this positive feeling and a general belief that all would be well in the end.

My radiotherapy ended in mid January of 2003 and the lack of memory I was warned of soon kicked in and when I look back to that year I barely remember anything from it. All I do recall is that I felt better after the radiotherapy and it was all worthwhile.

By mid 2004 I had completed my now extended MA and was looking to finally get myself writing and one day have a play on a stage or a movie on a screen. I spent much of 2005 with my head down, sending work here and there, receiving the occasional email, ‘good but not good enough’ being the general view. With friends and family being wonderfully supportive I kept my chin up and persisted, and I entered 2006 thinking that this would be that year I would finally get somewhere. Not only would I enter my thirties, I would also enter a new phase with my writing where directors and actors, not friends and family, would read my words.

However, as the year went on I once again began to experience more seizures and suffer again from more frequent bouts of ‘speech arrest’. As radiotherapy is a ‘one time only’ treatment I was now introduced to chemotherapy and this began on July 18th, 2006. This was a year where the challenge was meant to involve me making it as a writer. The challenge now was to battle away through nine months of feeling tired at the top of a flight of stairs, of being unable to walk the dogs in the New Forest, and of having…….to pause…….when speaking…..because I would…..get out of breath… quickly. A scan after twelve weeks revealed that the chemotherapy was working. In a bizarre way it was now a challenge to enjoy.

It was a battle to keep my weight down, I ate more healthily than I had done for years and bought a new exercise bike in January. It was a struggle to write for an entire evening, but I would constantly scribble down notes and do all I could to keep my creative soul active. As I knew that the chemotherapy was working I was determined to not only benefit from it but also DO something during it.

My chemotherapy was bought to an end on April 16th 2007, just one week ago, and I sit here now thinking of my future. There is a very good chance that part of that future will indeed be another run of chemotherapy. However, I also believe that part of that future could well be actors reading my words. On stage, or on screen. Preferably both. On many occasions.

I have lived with my tumour for fourteen years now and to be brutally honest I do not believe I would rather not have had it. Without it I would not be the person I am today and according to some, I am a pretty decent chap. I am able to put smiles on people’s faces and many have spoken to me of how I have in fact inspired them from time to time. I certainly believe that having my tumour has opened both my eyes and my mind far wider than I ever would have done if I’d not had it. It has made me appreciate life that much more and made me set goals far higher than I ever would have done if life had been easier.

With brainstrust, you are never alone. Click here to get in touch with one of our trained volunteers who has been through the same experiences you are going through.


The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here:


The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.


Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites


The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.


Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.


The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.


More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here: