In Fundraising News

Margaret’s Run, Row, Ride Diary – The Final Instalment !

Day 10 I think..

Here in Sydney it’s Sunday 10th November. Another day, another airport and one scrambled brain (nothing unusual there!!)

What do you do when you have to wait 4 hours for an internal flight to The Gold Coast???

Walk, Run, Walk, that’s what you do. Never doubt my commitment to this challenge.

Wish I could send some of this sunshine to the UK.

Hope you enjoy the sunny airport pics.

Run, Row, Ride

I’ve not had internet access for a few days but I have still been running in the sunshine.

My pace has increased, my energy levels have increased and I’m feeling pretty good having put my recent set back in a box in my head and firmly closed the lid for the next four weeks.

Be prepared for posts of sunshine and beautiful beaches!

Day 17.

I have now had the privilege of being able to run for seven days here in Australia.

I have ventured further afield and enjoyed exploring new places and discovering more great flat boardwalks .

We currently have two nights at Emerald Beach staying in a studio in Surf Street. With the doors open we can relax listening to the ocean, the perfect way to unwind after running the day’s Mile.

I am so pleased that I decided to take on this challenge, my confidence in my ability to complete a mile a day for 30 days has increased immeasurably. I smile constantly, feel six inches taller and my sponsorship over on my just giving page will hopefully mean that many more brain boxes will be available for those who need them.

Please enjoy the photos.

I hope I can transport you temporarily to these beautiful places, lift your spirits and bring you peace and strength.

Thinking of you all.

Day 18.

We have found our little piece of heaven here at Emerald Beach. I could stay forever. I struggle with noise and crowds of people but I could sit and listen to the sound of the waves breaking on the shore forever.

I asked the pacemaker to find a flat walk however on the advice of the owner of the local Mexican restaurant we did the “Look at me now “headland walk. Up down and round and round. Stunning views, close encounters with kangaroos and a tear in my eye as I realised just how fortunate I am to be able to experience this.

I’m off for a cup of tea and some painkillers for my aching knees!! Today was a real challenge but also so rewarding.

It was a truly marvellous Monday for me. I hope you all have a momentous day as well whatever you are doing.

Day 19.

A beautiful FLAT run this morning along Emerald Beach. A run 🏃‍♀️ of reflection as we move on to our friends at Port Macquarie today.

I simply 💕 this place and the little community. I have felt alive and totally uplifted here. The world has become full of possibilities again.

I can run the beach and back with only two breaks.

I am slowly conquering the fear of a raised heart rate triggering a seizure .

I could easily become an ageing beach bum!!!  Love to all

Day 20.

I’m really getting into the swing of this now. The sun is still shining, and I look forward to getting up and out.

Still at our friends who live at Lake Cathie (pronounced Cat eye) just outside Port Macquarie in NSW. This area was badly affected by the recent bushfires. The fires came right up to the back of their property and the estate was evacuated apart from two houses. One being our friends’ home. You can still smell the smoke, embers still smoulder in the blackened bush, everywhere is eerily quiet and still although you can hear the birds again this morning.

On my walk/run I noticed that there was new growth at the base of burnt bushes. Nature is wonderful at healing and recovering after devastating fire.

I plan to do the same with my life.

Sending you all healing strength, love and positivity from this beautiful and remarkable country.

Day 21 – Three weeks done!!!!

A day for reflection.

I cannot emphasise enough how happy I am that I took on this challenge. Not only have I spent an hour a day doing nothing but channel positive energy to you all whilst running in some pretty special places but my outlook for the future has also ramped up a level and I am excited about what the future holds!

My energy levels are up another level to last week. I don’t gasp for air when I get back. In fact, I want to continue most days and have done so on several occasions.

My bubble of happiness was dented briefly at 2.00am this morning when my mobile rang. It was a lady from The Churchill Hospital in Oxford. “I realise this is short notice but an appointment has become available tomorrow to see Dr Hobbs to discuss Steriostatic Radiosurgery. ”There was a silence when I explained I was currently in Australia! She will make a note on my record. I have spoken to and messaged two people about my plans. A little unnerved for a few hours but the lid on the treatment box is now firmly shut again. Only to be opened mid December.

Love as always to you all!

Day 22

We drove a couple of hours down the coast today finally catching up with our daughter and family.,

Today’s 🏃‍♀️ was at Forster NSW when we stopped for lunch. Very hot and muggy!

Day 23

We have a long weekend with our Australian family at a beach resort at Boomerang Beach near Blueys:

This morning I ran five laps of the resort as I am not confident in new places. There is a one way system within the resort. It I follow the arrows I cannot get lost!

I have met two BT warriors in the past two days. My brainstrust tee shirt has prompted conversation and encouraged support.

Happy to be raising awareness! Love to all.

Day 25

Up early to run before we set off for Newcastle, the final destination on my trip. Five laps of the track, following the arrows!

Had a wonderful weekend with my little Aussie family. The boys were so happy to see us. The love and support offered to us by these guys helps us to keep going. So worth the long, long journey!

Day 26

Really hot 🥵 today. 32 degrees first thing this morning!

Too hot for me to “run” so decided to take the dog for a brisk walk just to keep my mileage up, although I have definitely exceeded 2km a day
over the past month. Not sure Charlie was impressed. I told her it was good for her and promised her air con on when we got home! It worked and I was able to tick day 26 as done✅

I have to be careful in these conditions as excessive heat and dehydration can trigger a seizure in spite of my anti-seizure medication. I have drunk plenty of water and now resting with the dog next to the air conditioner!

Happy Tuesday from a very warm Australia!

Run Row Ride Day 27

Big day for me today. Today I ran/ walked from Bar Beach to Merewether and back.

What I hear you ask is so significant about this run?

The walk from Bar Beach to Merewether is one of my “happy places “. It’s where I take myself when I have an MRI. I know and can picture every step of this run . I wondered if I could ever do it again.

The original plan today was to go to Newcastle Ocean Baths and run in the pool as my knees were aching. However when we arrived the pool was closed for the weekly clean! Bob suggested Bar Beach to Merewether as he knew it was one of my favourite run/walks. I was concerned I would not be able to do it but I did and managed lunch before returning.

It was a stunning day, not a cloud in the sky, a strong breeze and amazing waves.

I am constantly in awe of the ocean. I hope the sights and sounds of the ocean lift your spirits as they have lifted mine and help you have a wonderful Wednesday.

Run Row Ride Day 28

Another beautiful day here today and it also happens to be my husband’s 67th birthday. This man has been a tower of strength to me over the past three years, supporting and encouraging me through diagnosis, surgery, recovery and now the prospect of stereotactic radiosurgery after recent regrowth. I could not manage without him.

We celebrated with a trip to Blackbutt Reserve with the boys. Unfortunately it was a stick day for me today , my recent efforts catching up with me. Still managed to walk over a mile but no running, saving my energy for tomorrow! Happy Thursday!

Run Row Ride Day 29 – long post!!

My penultimate day of the challenge and everything is going well. I have almost reached my fundraising target thanks to the generosity of friends and family,

This morning I went to Newcastle Baths and ran in the pool to help keep my knees okay for the mega challenge I have in mind for them tomorrow. More about that in my final post in the morning.

Running in the pool was really hard. It would have been easier to run on the spot. I met a lovely lady in the pool, she was originally from the UK , a nurse and had a friend who had had a benign brain tumour removed over 30 years ago and was still going strong! She wished me well for my final run tomorrow. We chatted and ran widths of the pool for over 40 minutes, I was like a wrinkled prune at the end and really enjoyed my cappuccino and banana bread!

I have met some lovely people as a result of wearing my brainstrust tee shirt and have enjoyed sharing stories and raising awareness.

My own story started on 4th October 2016.

I was away for the weekend in North Norfolk with my husband and some Australian friends. We were 3 weeks into a 12 week building project at home and 3 weeks away from an eagerly awaited trip to Australia to see family . I had a massive seizure at Sheringham Railway Station. I was blue lighted to hospital in Norwich where it was thought I had had a stroke. I came round in resus and gradually regained the power of speech and use of my right side. I was taken for a CT scan. I will always remember the three doctors walking down the room towards me with serious faces. They showed me the scan and announced “you have a large mass on your brain “. I was admitted and kept in hospital for two days, started on anti seizure medication as well as steroids to reduce the considerable swelling on my brain. An MRI the following day confirmed that I had a large left parietal meningioma. I was sent home with care being transferred to The John Radcliffe Hospital in Oxford. A week later I saw Mr Jeyaratna . Surgery was the only option once the swelling had reduced. I did not go to Australia that November. After battling with side effects from both keppra and dexamethasone I eventually had my 7 hour surgery on Friday 13th January 2017 two weeks before my 60th birthday. It was a total resection.

Recovery was steady but slow. I had to surrender my driving licence, I was unable to return to work and fatigue was my regular companion . My tumour had been pressing on the part of my brain that dealt with mathematics and direction. Figures had become like a foreign language. I had been an accountant and therefore returning to my old job was not an option.

I had my first cluster of seizures six months after my surgery. It was a beautiful June day, I felt well, had been at a meeting with our financial advisor and then went to restorative yoga. I ended up having a seizure in the class and was taken by ambulance to MK hospital where I had several more. Unable to speak coherently and then becoming unconscious again it was thought I had had a stroke. I came round, had a CT scan( not a stroke) keppra increased and I was sent home. An appointment was made to see a neurologist at MK hospital.

This pattern continues. I now have a diagnosis of symptomatic epilepsy. My keppra dosage has been increased several times and the time between clusters of seizures has increased and their severity has lessened. The last cluster was in August whilst at Bletchley Park.

My life now revolves around managing fatigue and seizures instead of managing a business and large sums of money.

brainstrust and in particular this support group have played a large part in regaining my confidence, accepting my new life and embracing new challenges. I was fortunate enough to attend the brain tumour symposium in Milton Keynes ( in 2017?). It was both informative and inspirational.

My recent MRI in August 2019 has shown regrowth at the original site. I was discussed at the MDT meeting two days before we came out to Australia. I rang for the outcome of the meeting the day before we flew. The recommendation is stereotactic radiosurgery. As yet I don’t fully understand what this involves , I am just happy there is a plan.

Taking the Run Row Ride Challenge for November is a great diversionary tactic for me as well as a great opportunity to raise some funds for brainstrust. I also want to be in a strong place both physically and mentally to face whatever lies ahead in the immediate future.

I am also considering another challenge next year, Follow the Seagulls.

A step too far? Who knows, but there is nothing wrong with aiming high!

Love to all, may Friday bring you peace, strength and above all joy.

Run Row Ride Day 30 – Final Day

Up bright and early ready to do my last run ( or maybe not??) or at least my last run on this challenge.

I had always planned for my last run to be Nobby’s Breakwall and back and YES I made it, only walking on parts of the way back.

Nobby’s is also a significant place for me. It is one of the iconic views in Newcastle and I just love it! It is a flat walk, as you walk out towards the Breakwall and look to your left you can see the Hunter River and the Port, the coal ships enter and exit 24/7 , small sailing boats also make for interesting viewing. Ahead you see the iconic lighthouse ( open at weekends and when cruise ships are in) and to your right is Nobby’s beach, a glorious golden sandy beach, usually empty.

My soul soars when I am here and today was no exception.

——————–

I did it!!

Run Row Ride challenge completed.

Fundraising target achieved.

It has taken a day to sink in. Who would have thought that when I signed up at the end of October that this challenge was achievable for me?

I have learnt a lot about myself as well as rekindling my love of running and power walking.

Thank you so much for the likes, comments and support over the past month. It has inspired me to keep going.

My running shoes may be resting for the last few days of my trip but I have fabulous memories of the places I have run.

The weather yesterday was not great so I walked (no running) back to Nobby’s today and climbed to the lighthouse to get some shots of this fabulous place.

Love and support to you all.

Margaret x

 

Well Done Margaret!

SIGN UP FOR RUN, ROW, RIDE: LOCKDOWN EDITION

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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 cancerousNon-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