In Fundraising, Fundraising News

 

We’ve been catching up with Donna, following her Cardiff Half Marathon challenge to hear how it felt to take part.

Donna signed up with Team brainstrust earlier this year, taking inspiration from her friend Areesha who was sadly lost to a brain tumour this year. Donna describes Areesha as someone who, ‘never shied away from a challenge’. Inspired by Areesha, Donna chose to set herself an incredible fundraising target of £1,500.

‘Turns out running a half marathon is pretty damn hard.

Thanks to everyone that donated to my fundraising efforts. Thank you to everyone who has asked about my training, checked in on me and said good luck to me. Thank you to everyone that came out and cheered today. Thank you to everyone that told me I could do it even when I didn’t think it I could. Thank you to everyone who’s asked about why I’m doing it and let me talk to them about Reesh. And a special thanks to Laura for being the best training buddy I could have asked for. I’m so glad you let me tag along with you on this ride.

And lastly to Reesh, I miss you so much but it felt like I had you with me today. And that in itself was worth this entire journey.

This photo is of me and Laura with a sign her husband made to cheer us along. One of the things we talked about after Reesh dying was how we wanted to be more like her, say yes to things and generally just really go for it and enjoy opportunities that arise that we might not have said yes to before. And because of that we started saying “be more Reesh”.

Thank you so much for your support along this journey. I’m so glad I picked brainstrust to fundraise for.’

Donna you’re an inspiration – we can’t thank you enough for your amazing support and for smashing your fundraising target by raising a huge £1630!

Prior to taking part in the Half Marathon Donna shared her thoughts on her upcoming challenge with us;

The Cardiff Half Marathon takes place on 2 October, and although Donna has admitted she’s, ‘most definitely not a natural runner, or an experienced one!’, she’s been training hard and with less than a month to go we invited Donna to share her motivation for running and to reflect on her training so far;

‘I’ve been sitting in front of a blank screen for the last half an hour trying to figure out how to start to write what motivated me to run the Cardiff Half. And with tear-stained cheeks, I reluctantly admit, it was grief. That kind of grief that is all encompassing and physically painful. That kind of grief that just makes you wish there was something, anything you could do to make it go away, but there isn’t. 

On February 19th 2022 I lost my dear friend Areesha to a brain tumour that she was diagnosed with less than a year before. Reesh was not like anyone I’ve met before, she was wildly extroverted, loud, dramatic and absolutely hilarious. And she said yes to everything. Once she flew to New York, then drove to Philadelphia on her own to meet up with our roller derby team and play the last 2 games on our first USA tour. Then flew back home 48 hours later. To say Reesh lived life to the fullest is an understatement; she packed more in 35 short years than most do in a much longer lifetime. And I’m so glad she did. 

I knew I wanted to do something to honour her ‘say yes’ attitude and when my friend Laura said she was running the Cardiff Half in memory of Reesh I asked if she wanted someone to do it with her. And the next thing I know I’m signing up to run 13.1 miles having not run in over 6 months and never having run more than 7 miles in my entire life. But one thing I knew for sure was that if Reesh was still here she’d be our biggest cheerleader.

Training has been full of ups and downs. It started off fairly well and I was following my training plan and it wasn’t too hard to motivate myself to put my trainers on and get some miles in. But unfortunately, after avoiding Covid for 2.5 years my luck finally ran out. It hit me pretty hard and I wasn’t able to run, or exercise at all, for five very long weeks. But patience (not one of my virtues) prevailed and I managed to lace my trainers back up towards the end of August and restart training. It’s been humbling to not see the progression I wanted to. I’ve had to dramatically adjust my goals for the race but it really has brought me back to the bigger picture of why I’m running. I am running for Reesh, for someone that was so incredibly full of life, so ready to take on any challenge and so willing to help her friends when they needed it. And I guess this is what running the Cardiff Half for brainstrust feels like to me, helping a friend.  

I am so incredibly grateful for the generosity people have shown with their donations. Whilst I am nervous about the race, there is no doubt in my mind I can do it. And on the day, when I hit that inevitable wall, I’ll think of Reesh cheering me on and every single person who has supported me along the way.’

We’re delighted to welcome Donna to Team brainstrust and want to send a big thank you to everyone supporting her along the way.

You can catch up with Donna’s training and fundraising by clicking here.

Go team!

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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