In Do your own thing, Fundraising, Fundraising News

A story of friendship

Determined and committed, Greg is taking to the seas in loving memory of Seth Dickenson. Greg met Seth’s parents, Sam and James, during brainstrust’s 2019 Follow the Seagulls trek.

Whilst conquering 50 miles over the challenge weekend, they had the pleasure of connecting. After chatting along the coastline from sunrise to sunset, they formed a close friendship that continues to this day. Sam said:

“We first met Greg on our Dartmouth Follow the Seagulls walk in 2019, just after Seth had successfully completed his first round of treatment. I remember spotting him on the bus to the start, with his long hair, beard and Gandalf style walking pole and thinking “ah he looks like someone we’d get on with!”

50 miles and a few beers later, we’d established that yes, we all shared a sense of humour and what really struck me was that, unlike us, Greg had no other reason to be supporting brainstrust other than sheer generosity of spirit. He wanted to do something local for a good cause and walking 50 brutal miles of the Devon coast path was it.

Now poor unsuspecting Greg was about to find out that he was going to become adopted by the Dickensons! I took the boys to visit him over the summer and a firm friendship sprang up.”

Inspiring a community

A the time, brave little Seth was just five years old and had undergone intensive treatment for his brain tumour. Having been supported by little brainstrust, we were all overjoyed to witness Seth ringing the ‘end of treatment’ bell. Sadly, in early 2020 the family received some devastating news – Seth’s cancer had returned. From that moment on, #TeamSeth gathered around the Dickenson’s to offer their support.

Seth, his parents and his three older brothers inspired so many people to help raise vital funds in support of families affected by a brain tumour diagnosis. From virtual runs to quiz nights, the #TeamSeth community has gone above and beyond to raise thousands of pounds, all whilst making special memories to treasure forevermore. Greg has played a big role in this, and continues to show his support for the family’s chosen charity, brainstrust.

“In May 2021 Seth’s fight sadly ended at the age of seven. He was a fighter and an amazing little human. Inspired by Seth, I’m now taking on another challenge of wild swimming for 365 consecutive days. No wet-suit, all weather’s and conditions. From the total raised over the next year 20% of donations will go to the 365 Legacy fund (funding local Torbay projects) and 80% to brainstrust who help support those affected by brain tumours.”

Remembering Seth

We recently spoke to Seth’s mum, Sam, about Greg’s 365 challenge. Sam shared a special memory, and explained how grateful she is to Greg for his friendship and support:

“I think my favourite story that Greg has told us is that playing catch with Seth down on the beach one afternoon, Seth said “Greg, I’m not very good at this game!”

“Why not Seth?” Greg asked.

“Well I’m blind in one eye aren’t I?” Seth replied matter of factly, properly putting Greg back in his place with a twinkle in his (good) eye!

And that was our boy all over. Despite everything, always laughing, always winning people’s hearts. Which is why when Greg mentioned to us about doing the 365 swim in Seth’s name, we felt not only honoured, that someone would take on this challenge in the name of our brave little warrior but also immensely grateful that through this act, our little boy will be talked about and remembered.”

Sam continued to share some touching words about Greg, and the heartfelt meaning behind his challenge:

“I think one of a parent’s greatest fears over losing a child, aside from the grief, is that their child, their world, will be forgotten or that people will be afraid to mention their name for fear of causing further hurt. But in fact, talking about Seth, sharing his story, his bravery and his absolute determination to live his life to the full helps us to feel that his short life wasn’t for nothing. We hope that his journey will inspire other people to keep going when times are tough and push people to achieve more than they think themselves capable of. Greg’s swim challenge is a part of this, his desire to support brainstrust in Seth’s memory, to keep that spark of determination alive means that other people will benefit indirectly from our son’s short life.

The beach was one of Seth’s favourite places and although health problems meant he wasn’t allowed to go in the sea for the last year of his life, he was never happier than beside the sea, so Greg’s challenge seems incredibly appropriate. After Seth’s funeral, we gathered on the beach and at least 20 people joined Greg in his swim for the day to mark Seth’s passing and celebrate his life. It was an incredibly moving moment as the swimmers joined together in a circle of friendship to remember Seth and his incredible zest for life.

As a family, we all love a swim but the thought of taking on a 365 wetsuit free swim challenge is a really bold one and we hope to support Greg as much as we can through the coming months, as a support to brainstrust but also as a huge thank you to a stranger who became a great friend to us all in our time of need. Thanks Greg, together we are all #teamseth!”

Making every day count

You’ll find Greg near the resting tide or the rugged shores – come rain or shine, he’s pledged to brave the wild waters for 365 days and we’re in awe of his extraordinary fundraising efforts. Greg aims to raise an incredible £3,650 to match his daily commitment to the challenge.

little brain box 2020

This could fund the cost of providing 90 families with a little brain box – our must have support toolkit for children, young people, caregivers and family members affected by a brain tumour diagnosis.

Every brain box is customised, and includes a selection of age appropriate resources, such as our young people’s radiotherapy book and who’s who guide to clinical teams. We also include some small gifts to help everyone practice the importance of self-care. Having raised over £500, Greg is already making an incredible difference and we couldn’t be more grateful for his continued support.

To document his epic adventure, he’ll be posting his progress online through Instagram and Twitter @Greg365Challenge, so be sure to hit follow and join us as we wish him the best of luck all year round!
To sponsor Greg via JustGiving, please click here. If you’d like to read more about the 365 challenge, visit: www.365seaswimchallenge.com 
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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