In Past Events, Uncategorized

Returning to the stage

Later this month, Tim Wormley-Healing returns to the stage with his brand new band, 20YardsBehind! Tim was diagnosed with a brain tumour in September 2019, just as the band were getting ready to perform their first ever gig. Tim’s sudden diagnosis left him needing surgery, radiotherapy and chemotherapy – an inspirational story which he shares below.

Determined to do what he loves most, Tim got back behind the mic in December and the band are now preparing for their spectacular charity concert in aid of brainstrust.

Tim and his band, 20YardsBehind! have offered an open invitation to anyone who would like to attend what we’re certain will be an incredible charity concert later this month.

 

A date for your diary

  • Date: Sunday 23rd February 2020
  • Time: 3.30pm onwards
  • Location: Bexhill Rowing Social Club, Bexhill-on-Sea, TN40 1JU
  • Price: FREE *voluntary donation to raise funds for brainstrust 

 

Tim’s Story

I’m 59 (60 in July) and live in Bexhill-on-Sea, East Sussex. I’ve been married to Viv for 38 years and we have 2 grown up daughters, Charlotte and Ella as well as a 5 year old grand daughter Alexa.

On Thursday 5th September 2019 I was at work at my office in Lewes. I had no warning signs such as headaches or dizziness when, without warning, at 4pm I had a massive seizure. This caused me to fall backwards and I struck my head heavily on a cupboard as I fell, knocking myself out. The fantastic people I work with went into action. They made sure I was safe and called and ambulance. They then called Viv to alert her to the problem.

The ambulance arrived quickly and whisked me off to The Royal Sussex County Hospital in Brighton. I had come to by then and was complaining of head and neck pain. I was immediately sent for a CT scan. The scan showed that in falling I had cracked a vertebrae in my neck. It also show a lump in my right temporal lobe and I was referred immediately to a neuro-surgeon.

By this time Viv had arrived at the hospital and was shortly joined by my daughter Charlotte who had hightailed it down from London where she lives and works. The two of them stayed in Brighton for the next few days whilst the story unfolded.

The next thing I remember is [my surgeon] sitting by my bed in ICU and telling us that I had a 3cm tumour in my brain and he needed to operate as soon as possible. We went through the detail and consent forms and he operated on Monday 9th September. It took 5 hours but we were told afterwards that the operation had been very successful and the bulk of the tumour had been removed. The bad news was that the tumour was a Grade 4 Glioblastoma Multiforme and that it was almost certain that some small tendrils would not have been removed by the operation and I would need to go through several months of radio and chemotherapy. I recovered very quickly from the surgery and was deemed fit enough to go home on Thursday 12th September.

A few weeks later Viv and I went to meet my Oncologist who was very stark in her description of the treatment and the probable side effects as well as the fact that despite any treatment the prognosis for this type of tumour was very poor. On average people only last 12 to 24 months! This was not dressed up in any way and knocked us both sideways as there seemed to be very little hope.

However, I am an optimist and refuse to be a statistic or average. I have been through the 6 weeks of radio/chemotherapy and coped very well. I am now on the 4 weekly cycles of home based chemo therapy and continue to do well. My last MRI scan showed no visible signs of regrowth. I have had no more seizures and not one single headache since this all started.

What’s more we have decided that life is for living and we must continue to enjoy doing the things we’ve always done. This isn’t hiding from the reality of potential outcomes, it’s ensuring we get the best out of every day we have. This includes Viv continuing with her tap dancing and me getting back together with the guys in 20YardsBehind!

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Introduction

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: http://cancerdata.nhs.uk/standardoutput

Incidence

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

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

Mortality

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.

Non-malignant

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

Survival

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

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

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

https://www.brainstrust.org.uk/advice-glossary.php