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 Margaret’s Run, Row, Ride: LOCKDOWN EDITION diary

I have just signed up for brainstrust latest Run Row Ride Challenge. I really enjoyed the last one in November and I learnt so much about myself and what I am capable of. This time around it will require more effort and determination as I only completed six weeks of stereotactic radiotherapy on 6th April and Fatigue comes to say hello quite frequently. I tell it politely to go away but it does not always listen! Stronger tactics are required, hence the decision to accept the 30 miles in 30 days challenge.

Day One

Awake bright and early, excited to be challenging myself again. I was joined by fellow brainstrust member and friend Jaime. I was touched and encouraged when she messaged me and offered to join me on my first walk.

I am no where near as fit as when I completed the November challenge, having recently completed 6 weeks of stereotactic radiotherapy, but I will get there.

Jaime suggested we walk Tongwell Lake. It is exactly a mile around the lake (and half a mile to get there from my house). A little out of my comfort zone as I haven’t walked or run around the lake for many, many years. It was a stunning morning, the trees and bushes have matured beautifully since I was last here and it was great walk the route with such supportive company!

Happy Monday everyone!

Day Two

I felt really weary this morning. Trying to be sensible and listen to my body, I chose to have a quiet day and to leave my walk ( with a bit of a jog) until early evening when it was a little cooler.

I was a little worried that I might have taken on more than I was capable of at this stage in my BT journey but as soon as I set out in the warm evening sunshine my spirits lifted, energy flooded into my body and off I went, slowly but surely.

I stopped at the bridge to take a photo of the canal boat and then to check on the swans nest. Initially I was concerned as there was not a swan sitting on the nest but imagine my delight when a few hundred yards later I spotted the proud parents gliding around the boat basin with seven cygnets in tow!

So worth the effort. Thankful to have this on my doorstep. I can and I will do this!

It was a tremendous Tuesday!!

Love 💕 to all.

Margaret xx

Day Three

Think the smile says it all.

Having discovered my bike in the shed (if were a betting woman I would have put good money on the fact that this had gone to the tip years ago! ) and having ordered a cycle helmet which arrived this morning (men’s large- I have a massive head) my ever supportive husband encouraged me to go on a flat bike ride with him this morning. I have been practicing getting on and off for a while and pedaling round the driveway .

I felt a little anxious and was wobbling a little at first, rather like a snake slithering along the path but once I got going it was fabulous! Took me back to my former life with spin classes at the gym. I felt free and invincible (until I got to an incline). I will master appropriate gear changes and my legs will get stronger.

One day walking, one day cycling I will manage this challenge. 3.41 km today. Not bad for a 63 year old woman having had a craniotomy 3 years ago and 6 weeks of stereotactic radiotherapy earlier this year.

Never give up on yourself.

Wonderful Wednesday.

Love and strength to all.

Margaret

Day Four

This morning I felt really tired. The euphoria of yesterday and managing to successfully ride my bike again had given way to a feeling of frustration that my energy levels today were virtually non existent.

After a stern talking to myself, I washed, dressed, put makeup on , grabbed my hat and got my mile in.

So pleased to be doing this challenge otherwise I think I might just have stayed in feeling sorry for myself. Family and friends have been so supportive and encouraging which spurred me on.

Once I was out and closed the front door I immediately felt much better. I took pictures of the community garden that has gradually been developed by the owners of one of the bungalows by the playground. They work so hard in all weathers to brighten up the area. As always my mood improved at the sight of the beautiful flowers as I headed towards the canal.

Hoping that Thursday was kind to you.

Margaret x

Day Five

How the weather has changed since the beginning of the week.

Today I decided to grab the opportunity in between showers to get out for my daily mile. The weather definitely affects how I feel and my ability to achieve. I have learnt however that I DO feel better if I get outside in the fresh air.

It was a mixture of walking, jogging and stopping to take in the views and the sounds of nature on my doorstep.

I checked on the swans, sitting on the nest today. I saw ducks, moorhens and many different species of bird.

Stepping out of my comfort zone again I jogged along the towpath and by some miracle I did not fall in!

This week is not about beating last year’s times or even about recording times.

Success is about getting out there every day and doing at least a mile .

It is about proving to myself that the belief of friends and family has been justified and that their donations to my just giving page will enable Brainstrust to carry on offering help and support to those who need it.

Mission accomplished for today!!

It is a fabulous Friday!!

Much love

Margaret x

Day Six

On my bike in this strong wind. Just home and my cheeks are burning, my knees are shaking and my bottom aches!

Bob is a hard task master but I did it, only one incline I had to walk up. Getting stronger and more confident.

That’s me done for soggy Saturday!

Much love

Margaret x

Day Seven

I didn’t think my poor derrière could take another bike ride this morning so along with my lovely friend Wendy we took her dog Rossi for a wonderful brisk walk along the canal. 6km.

We chatted non stop for an hour and a half. She has been a friend for over 30 years and is one of my group of friends known collectively as Maggie’s Maidens.

Throughout my BT journey she has always been there offering support, encouragement, Sunday lunches (before lockdown), walks, lifts, afternoon teas to both Bob and I. She was also one of the team of people who helped with lifts to Oxford during my recent stereotactic radiotherapy.

One of life’s special people. She told me today that she has put brainstrust forward as her company’s charity of the year. She will find out next week if she has been successful. Fingers crossed.

Reflection on week one.

The first couple of days were so hard. Radiotherapy certainly knocks the stuffing out of you, however much you try and pretend it hasn’t. If I hadn’t accepted this challenge I most certainly would not have carried on. However I’m sat here today feeling energised and quite amazed at what have achieved in 7 days.

My energy levels, although still variable, have increased.

I am humbled by the support of family and friends on my just giving page.

I feel more positive about the future.

I am looking forward to getting back on my bike tomorrow!!!

I never thought I would be saying that .

A successful Sunday for me. I hope it is for you too.

Love to all

Margaret x

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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