In Do your own thing, Fundraising

In a heartfelt tribute to her late father, Hannah Mayne embarked on a remarkable journey, walking 40 miles across the rugged terrain of the Lyke Wake Walk in North Yorkshire. This challenging endeavor holds a special significance for Hannah as she undertakes it in her 40th year, honoring the memory of the man who inspired her strength and perseverance. The Lyke Wake Walk, a storied path known for its beauty and difficulty, served as the backdrop for Hannah’s personal pilgrimage, a testament to her enduring love and dedication to her father’s memory.

 

Read Hannah’s story below:

In the year of my 40th birthday, I decided to take on a challenge that would make even the hardiest of souls reconsider their life choices: crossing the North Yorkshire Moors.  Following in the legendary footsteps of my dad, who strode these same paths 35 years ago in a mere 20 hours, I set out to prove that the apple doesn’t fall far from the tree. I imagine he’d be proud, though perhaps slightly put out that I dared to challenge his record. He lost all his toenails afterwards! I can report no toenail loss and no blisters. #smug

Pablo and I booked a 2-night stay at the Cleveland Tontine boutique hotel and received exceptional care from Marie and her team. We were warmly welcomed and shown a beautiful superior bedroom. Thanks to my careful planning, the room featured a stunning freestanding bath with Temple Spa products, perfect for unwinding before and after my walk. When I informed Marie about our early arrival the next night, she kindly offered us access to the bar on an honesty-based system, which reminded me that there are still wonderful and trusting people in this world. If you’re reading this and seeking accommodation near the endpoint of the E – W reverse crossing, I wholeheartedly recommend the Cleveland Tontine.

At some ungodly hour, deep in what can only be described as the hour of the dead, our alarm rudely woke us at 3:30 AM. I’m convinced there’s nothing to do at this time except sleep or be dead. But no, for some inexplicable reason, this was the start time for my 40-mile walk. Fondly known as the Lyke Wake or Walk of the Dead. The coffin walk, okay?  After a couple of Nespressos, our journey began at 4:45 AM with a drive over to Ravenscar, where the promise of coastal views and the ominous expanse of the moors lay ahead. The plan: walk 40 miles from east – west, ending in Osmotherley.  Simple, right? Well, not quite.

Accompanying me on this foolhardy adventure were 12 other determined souls, beautifully guided by the dynamic duo, Kathy and Den Johnson. Kathy’s energy and enthusiasm were matched by her grit and sense of direction, while Den’s understanding that he needed to be at the checkpoints or he would likely be in a coffin to be carried off across the moors, never to be seen again! Remember it was the walk of the dead after all!!

Then there was Pablo and Erin the dog (ETD), my mobile pit stop and full-on motivation manager. If there was ever a cheerleader in human form, Pablo is it.  Armed with dry socks, snacks, water, and an endless supply of encouragement, he kept my spirits high and my legs moving. He just knew I would need a full set of dry clothes, a warm cup of tea, and a replenishment of snacks! All made in advance, of course.

The Moors had other ideas. They threw everything at us: mud that could swallow a boot whole, bog that consumed people and walking poles, hills that laughed in the face of gravity, and winds that could strip the feathers off a grouse. But we trudged on, supported by the knowledge that every step brought us closer to our goal and the funds raised for brainstrust, a charity close to our family’s hearts.

The first few miles from Ravenscar to Ellabeck, crossing Jugger Howe Moor, felt like a rain-stained breeze, with stunning views and the soothing sounds of nature lulling us into a false sense of security. But as the hours dragged on, the challenge revealed its true nature. The relentless walking started to take its toll; my back, neck, and shoulders ached, and my legs were shredded by low-lying bracken and gorse. I had chosen to wear a skort (skirt/shorts) because I preferred bare legs to the ‘boil-in-a bag’ feeling of waterproof leggings, as Kathy cleverly described them. By the end of the bog section, I was soaked right down to my underwear! My Solomon GX4D boots, which had been fantastic until then, had let my feet and socks get completely saturated. Despite the excellent combination of Injinji Liner Crew Toesocks and Merino Danish Endurance socks, the saturated peat bog and relentless rain overpowered them.

We continued across Wheeldale Beck and its stepping stones, then under Wheeldale Plantation to meet the Blue Man-i-th-Moss, a boundary stone believed to have been placed in Roman times. Over 2 meters tall and surrounded by other boulders and stones, it has been repainted with a blue stick man. Rosedale Moor is incredibly boggy!! 3 people fell in and one walking pole will never see the light of day again.

We followed the road past the Fat Betty Cross (White Cross) and approached checkpoint 2 at Rosedale Head and Young Ralph’s Cross, I was thrilled to see my motivation manager and mobile pit stop. Every wet layer came off and went straight into a wet bag, and I changed into a full set of dry clothes and boots. Even my trusty brainstrust fundraising t-shirt was replaced with a fresh, dry one.

After this we followed the road onto Farndale Moor and then Round Hill, before following the Cleveland Way to reach checkpoint 3 at Claybank. From there, we continued past Lordstones, descended off Carlton Moor, and managed the last ascent followed by a very slippery descent through Clain Wood, Scarth Wood Moor, and finally reached the endpoint and Lyke Wake marker at Cod Beck Reservoir Car Park.

It took us 17 hours 30 mins, was just under 40 miles, ascent 5156 feet, descent 5449 and roughly 86076 steps. As day turned to night, the moors transformed into a mysterious and somewhat spooky landscape. The shadows played tricks on our minds, and classically the batteries in my head torch decided their time was up, they could go no further. This resulted in a very wet fumble to find and install 3 new AAA batteries. Thank goodness I had added batteries to the provision list the day before.

Despite the trials and tribulations, our camaraderie and determination saw us through. Each short pit stop, expertly managed by Pablo, felt like a mini celebration.  There were different conversations to be had with each member of the team and endless banter kept the mood light, even when our legs felt like lead and my shoulders and upper back were screaming at me.

Finally, after an eternity, we finally reached the finish line in Osmotherley. Exhausted but elated, we collapsed in a heap of mud-splattered joy. We had done it. 40 miles of the North Yorkshire Moors conquered, and all for a fantastic cause.  So here’s to my 40th year, a 40-mile trek, and the incredible team that made it possible. Dad, I hope I’ve done you proud, even if I did finish a bit quicker than you. And to everyone who supported us, thank you  from the bottom of our tired feet.  Now, where’s that pint?

Thank you to everyone who sent online and offline donations! I have raised £2,197.76 for brainstrust!!!

 

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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