In Fundraising News

 Week two of Margaret’s Run, Row, Ride: LOCKDOWN EDITION diary.

Feeling fatigued is familiar territory to people with a brain tumour, so the lack of energy at the start to Margaret’s week is not surprising. Margaret completed a course of stereotactic radiotherapy in April this year! Still, read on to see her overcome a busy and challenging week, and enjoy another pearl of wisdom from Margaret in Day 14.

Day Eight

One of my challenges this time round has been my energy levels. I never seem to known from one day to the next how I will feel. However the one thing I do know is that I always feel better once I get out the door and into the fresh air.

A cool start to the week and a gentle walk/jog was in order. So important to listen to your body when fatigue decides to visit!

Thinking of everyone who could do with an energy boost on this moody Monday!

Love to all

Margaret x

 

 

 

Day Nine

Another slow day for me today. Just happy to have got out there this morning and to have achieved another mile or two. I was happy to get back indoors, grab a hot chocolate and curl up under a blanket!

If I’m on my own I always keep to the north side of the canal. Never far from the houses should I find myself in trouble. How lovely would it be to live here with a view of the water and wave to the walkers.

I’m missing the sunshine! Hopefully Tuesday was a positive day for everyone!

Love to all

Margaret x

 

 

Day Ten

Back in the game again! Fatigue didn’t come knocking at my door today. WINNER!!!

Managed to get my miles in under cover in the shopping centre. Flat walking and social distancing easily achieved. Have you ever seen such an empty retail space. Really eerie!

The centre is exactly half a mile from one end to the other. We did a food shop in M&S , put shopping in the car and then power walked the centre twice!!

It takes all sorts, but it was raining!

Love to all on a wet and windy Wednesday!

Margaret x

 

Day Eleven

Busy, busy day today. I help care for my mum and dad who are both in their nineties. They moved close to us in April last year. I have devised a route to their house which is exactly half a mile. However, as I do this every day it feels like cheating myself if I count that as part of the challenge. Today, for one reason or another, I was backwards and forwards yo-yo. Please let those 15k steps count!

On one of the trips, I included my beautiful loop along both sides of the canal, checking on the swans and cygnets, marveling at the peace and tranquility of the canal-side walk and enjoying having the place to myself. I was pleased to have dodged the showers, managed to sidestep the puddles and arrived at my parents with a clear head, bags of energy, a smile on my face and plenty of patientce!

I ended the afternoon with a walk to Willen Lake with my wonderful dad.

A challenging day on my challenge but I came out on top!

Fresh air, the beauty of nature and some deep breaths can help so many challenging situations.

Thankful that this Thursday is over. If Thursday has been a challenge for you too I’m sending much love and a giant virtual hug.

Hope the picture lift your spirits.

Margaret x

Day Twelve

What a fantastic ride today!

We managed to miss the rain, call in to see mum and dad, have a coffee at our local cafe and spend some time looking at and marveling at the beautiful swans and cygnets!

Suddenly today my energy levels felt replenished after a weary few days and I wanted to seize the moment. After only three rides my balance is better, my legs feel stronger and my stamina has improved along with my confidence. I am starting to really enjoy getting out on my bike. Why have I not done this before?

Nothing I do is without a bit of drama. My bike 🚲 is old and changing gear can cause me problems. I freewheel as I change gear as I feel the gears stick. Bob took my bike for a test ride whilst I had my breather on the bridge. With his knees nearly hitting the handlebars he rode down the slope, round the block and back up to me. His verdict “operator error” – ignore the creaking and just keep pedalling as you change gear!!

Definitely a fabulous Friday!!

Much love and strength to you all.

Margaret x

Day Fourteen

Today I reached the half-way point in my challenge. Where has the time gone?

Today was a planned cycling day. To be honest my heart was not in it when I woke up this morning. However commitment made, I dragged myself out of bed, got myself sorted and off we went. I still haven’t been out on my bike on my own, I feel safer if Bob is with me.

Getting ready can be a challenge in itself. I take a back-pack with water, a snack, anti-seizure meds, money, phone, sunscreen, tissues… I like to be prepared, not forgetting the puncture repair kit. Fortunately I’ve not needed the latter yet.

Inevitably I leave something upstairs so run up and down a couple of times before we set off. Is it worth the effort I ask myself? YES is the resounding answer to that question!

Friends and family have been very generous in their sponsorship and having been on the receiving end of support from brainstrust the least I can do is get on my bike and pedal so that others can benefit from that same support.

It was a beautiful sunny morning and our original plan was to just ride around Willen Lake. It was incredibly busy so following my leader we turned off into uncharted territory for me. The network of redways in MK are fantastic, no need to cycle on the road at all, however you need to go down into an underpass at a roundabout and UP the other side. At times uphill can get the better of me but I only had to get off and walk once.

I am so happy that my cycling has improved so much in only a couple of weeks. Pushing myself out of my comfort zone on the bike has really helped my confidence in other areas of my life as well.

What once seemed impossible now appears to be achievable.

Success is making small changes that build into something bigger. Eventually you look back and realise how far you have come. Believe in yourself and be the best version of yourself on any given day.

It was a successful Sunday for me. I hope whatever you did today you did yourself proud.

Much love

Margaret x

Margaret’s taking part in Run, Row, Ride: LOCKDOWN EDITION – tackling 30 miles of running, rowing or riding in 30 days. Fancy the challenge? Set up your JustGiving page to get started.

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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