Edward Cox, along with friends Adam Sessions and Jon Silver, is cycling from John O’Groats to Lands’ End (990 miles) over 14 days starting 30th August, 2024. Their aim is to raise awareness and funds for the Brain Tumour Research charity. Having been diagnosed in 2020 with a glioblastoma himself and battled back to health, Ed and his friends decided to fulfil the long held ambition to ride the famous ‘End to End’ as a celebration of life and to raise funds and awareness in the process. He would also like to give others affected by the disease, hope for the future. You can read Ed’s story below.

Brain tumours kill more children and adults under the age of 40 than any other cancer yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.

Glioblastomas are a fast-growing type of brain tumour and are the most common type of cancerous brain tumour in adults. Around 32 out of every 100 primary brain tumours diagnosed in England between 1995 and 2017 were glioblastomas. Furthermore, the standard treatment for this type of grade 4 brain tumour, has remained unchanged in almost 20 years.

Ed’s story

In June 2019 whilst cycling with friends in the Peak District, an innocuous fall off my bicycle started a chain of events which would drastically change my life. In the days that followed my minor fall, I started to have headaches and suffer problems with my vision. Thinking I may have suffered mild concussion, I was advised to get a CT scan and that showed a mass which needed further investigation. The subsequent MRI scan showed what looked like a tumour and I was placed on steroids to help reduce swelling and my other symptoms and surgery was booked for a few weeks later with one of the top Neurosurgeons in London. However, on the day of the planned surgery MRI scans showed the mass had much reduced and surgery was no longer required.

That was a huge relief at the time, although no one really knew what exactly had happened, I was placed on ‘watch and wait’ with regular MRI scans to monitor the situation. 6 months on and my scan in March 2020 showed some changes, but before anything more could be done to investigate further, COVID hit.

As soon as restrictions would allow, I had a biopsy in June 2020 and on 1st July 2020 I received the fateful news via a telephone call that I had Glioblastoma Multiforme (GBM4) a grade 4 brain tumour. The neurosurgeon advised that surgery was not in my best interests due to the position of the tumour, which was close to my optic nerve; instead advising that I should have standard radiotherapy and chemotherapy treatment at my local cancer hospital (Castle Hill near Hull). My likely prognosis was 18 months, possibly 2 years due to my age (48 years old).

To say that it was a shock is somewhat of an understatement. Family and friends rallied round and we looked into all possibilities for alternative treatments. I was not going to give up without a fight and keeping a positive mentality was at the forefront of my mind.

Just as I was expecting to start down the route of radiotherapy a discussion with the inspirational and forward-thinking Neuro-oncologist at Castle Hill lead to an alternative treatment route. The team there thought surgery was an option after all and shortly afterwards my wife Rebekah and I met with the Neurosurgeon at Hull Royal Infirmary. He thought any removal of the tumour was of benefit and hoped to remove 50%. On the 4th August 2020 I went ahead with an awake craniotomy lasting over 6 hours, but amazingly surgery was far more successful than we’d dare hope, with 80% of the tumour removed. I requested that tissue removed was flash frozen in case it could be of use in the future with other possible emerging treatments such as immunotherapy.

My recovery from the surgery went well and a month later, the same day as our daughter Martha started in Year 1 at school, I started my six weeks of radiotherapy and thereafter 6 months of chemotherapy. Since April 2021 I have had regular MRI scans and so far, they have been stable. Luckily, apart from short term memory loss, suffering from fatigue and losing the ability to read, I am on the whole physically fit and well. I am a keen cyclist and since my diagnosis the idea of cycling John O’Groats to Lands’ End has been on my bucket list. So here I am, 4 years on from diagnosis for GBM4, starting my cycle ride on Friday 30th August; albeit with my chaperones Adam and Jon who will ensure I don’t get lost!

Along with raising awareness and much needed funds for the Brain Tumour Research Charity if I can also give hope to others affected by this deadly disease then that will be an achievement too.

All contributions, however small are much appreciated, thank you.