Becky’s Story


I started having what I now know were seizures in December 2009. I remember my first one exactly as I was coming back from watching Macbeth!! I thought it was a panic attack as I had been ill in 2008 with a bit of a breakdown. They became more frequent from roughly one a week to one a day. I didn’t really say much except to a few friends as I just thought everyone would be thinking, “oh no, she is getting ill again”! I did tell my mum, as they were getting worse, so I went to the doctors in 2010. We didn’t know what to make of them, they were all down my left side and it was a very strange feeling really, so the doctor gave me a self referral form to see a neurologist. I promptly lost the form and just carried on as normal.

I was getting very tired and didn’t feel right at all. I then went back to doctors in July 2011, as I think I knew things weren’t right. She made the appointment for me to go to see a neurologist in Norfolk and Norwich. He then got me an appointment for an epilepsy test – an EEG – and then I got an MRI appointment through.


It was on Sunday 9th October that I had the MRI done and I carried on as usual during the week. I got home from work on the Thursday and a letter from the hospital was waiting, asking me to come over on the 14th, which was the next day. I must admit it was really only then I thought something wasn’t right. Although I did convince myself that the new coalition government was getting hospital waiting lists down and they wanted me off their books!! 🙂

My mum took me over and I was taken into the doctor’s room accompanied by a nurse, sat down and was asked if I had anyone with me…of course I knew something was very wrong then!! My mum was brought in and I was told I had a brain tumour and saw the scan. My mum went to cuddle me, I nearly punched her, I didn’t mean to but it was very surreal.

Treatment options

The consultant said he had already been in contact with Addenbrooke’s Hospital and I had an MDT already working on my case. That was that I suppose, then I went to Addenbrooke’s for a meeting and was given three choices: have it out under full general anaesthetic, but this was not a good idea as due to the location of the tumour on the right had side of my head, I might come out with no good use of my left side; or have an awake craniotomy (!!!); or not have anything done and basically let nature take its course…so an awake craniotomy was decided on! Eeeek! I had it done on Friday November the 3rd.

The Awake Craniotomy

Mr Price performed my surgery, it was the most amazing afternoon I’ve ever had, and I know that sounds odd but it’s the way I’ve remembered it.

I’ve remembered it with fondness. Everyone was so kind and I can remember the radio was on in the theatre, Andy Williams came on singing Moon River and I’m sure we were all singing it. That song means more to me than anything, it’s hard to listen to but at the same time it’s very comforting. In my head I remember talking to everyone about all sorts of things!! Just general chitchat whilst having brain surgery!

Everything went okay; it wasn’t frightening at all, more so the actual thought of having it done rather than the procedure itself. I was in hospital Friday to Tuesday, and went back two weeks later for results. It was a Grade 2 anaplastic oligodendroglioma, and was a bit bigger than a golf ball. There is still some left; it won’t ever really go away I don’t think. Mine is a ‘watch and wait’ situation, and I’m going back on April 26th for an MRI as I haven’t felt right but I’m sure it will be fine (fingers crossed).


It’s all very daunting and life changing isn’t it? It makes you look at life very differently indeed.
My family have been amazing and my friends have been fabulous, I’m moving back to my house soon as I have been at mum and dads. My wonderful friends gave my house a makeover and it’s just beautiful.

I’m left handed and really struggle now with my left hand, so I’m adapting, which is annoying but you just have to 🙂

I named my tumour! She is called Tulip the Tumour, as my friend calls me flora! Had to laugh otherwise I would cry a lot!!

I’m a mum I have 2 boys, I’m 39 I want to live

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: