At around 6.30pm on Friday 1st September I was sitting at my mirror when I felt spasms and uncontrollable weakness. I felt as though I couldn’t support my body and fell to the floor. My mum found me mid-seizure and called for an ambulance.
Migraines and stress were the initial diagnosis at A&E, until a young doctor requested a CT scan to be sure before releasing me. After what would turn out to be one of the more memorable nights of my life, I was told by the doctor that I had excessive bleeding on the brain and some irregularity in the imaging from the CT scan.
By 8am on Saturday morning, my life had completely changed …. I had a brain tumour.
From what I remember, things moved fairly frantically from that point. I was rushed into life saving brain surgery on the Tuesday and was back home recovering by the following Friday. We were told that over 90% of the tumour was removed and that we’d have biopsy results in 2 weeks. I was keen to prove that this was just a blip on my medical record and that I was going to be fine. So I pushed myself relentlessly to the point of exhaustion on multiple occasions, fresh air being my main source of happiness.
After a few weeks of tireless overthinking and recovery we were called into the hospital for the conclusive diagnosis.
It was confirmed to be a malignant grade 4 glioblastoma. Basically, the worst case scenario. A fast growing aggressive brain tumour with a poor prognosis. The length of survival is on average 15 months, with fewer than 3-5% of people diagnosed surviving longer than 5 years.
So there I was, 27, deciding on treatment options for a grade 4 brain tumour that would inevitably grow back at some stage; having to choose whether I wanted the chance to have kids in the future or radiotherapy.
Everything happened so fast from falling ill, the operation, results and treatment, it was all such a blur. The diagnosis didn’t hit me until a few weeks later when I was then terrified, going from a healthy 27 year old to a girl living with a terminal illness. Looking at me, you would never know I have a brain tumour. From the beginning I was determined to keep busy, I desperately wanted to carry on like normal. I pushed negative thoughts aside, and met this devastating diagnosis full on. After a year I obtained a new job and managed to move into a new home with my boyfriend. I was determined to be positive and beat this.
Since 2017, I’ve had to have further surgery, I've tried 3 different treatment plans, multiple cancer starving diets and since my last operation at the start of 2020, I’ve been attending regular physio to repair and rebuild my left side motor functions. There have been many lows across the 3 years but it still remains, I am fighting stage 4 cancer and it won't beat me.
At the last meeting with the NHS just before Xmas I received further bad news - there is further tumour progression indicating that the current chemo isn’t working, it’s back in the same place as before the operation last year. As with many cancers, mine has this really annoying characteristic where it grows back in any free space. So by removing it to see how harmful it is, we create an environment for it to grow again. Further invasive brain surgery isn’t really an option as it is likely to cause more deterioration to my movement and potentially be life changing.
So here I am trying to do something about it and turn things round, whilst I still feel well.
I am now 30 & I’m trying to raise funding for innovative treatment in Cologne, Germany. It appears most new GBM treatments are outside the UK and essentially have to be financed privately. The treatment I want to access is at the IOZK clinic in Cologne which is at the forefront for various GBM treatments including immunotherapy, electro hyperthermia and dendritic cell vaccine. This type of treatment has its risks but hopefully benefits too - I feel this is the most realistic option for me to pursue as of now.
Unfortunately as you can imagine, to access the treatment is costly, Covid is also making this process so much harder, with border restrictions and isolation periods when arriving in Germany, elongating how long we would need to stay each time. Anyone that knows me knows that I am proud and never really ask for help, but on this occasion I can’t do this alone. My family and I will be running various types of fundraisers to help raise money for the first stages, so please stay tuned to our page.
I will be taking on my own personal challenge of walking a marathon in January, which is no mean feat saying I have only just regained confidence to go out walking in the last few weeks, after nearly 12 months and ongoing issues with walking and balance.
Any funds raised not used for treatment of my brain tumour will be donated straight back into research via the Brain Tumour Charity to help others suffering from the same.
I would like to say a massive thank you to all for anything you can donate, it really will be a life saver for myself and my family will also be eternally grateful.
Here is the blog I have been writing the last 10 months https://greatbigmonster.wordpress.com
Thanks for reading,
- Jonathan BROWN
- Megan Gay
- Joanne Hughes
- James Boulton
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